Scarlett's Heart Blog

Appreciating Life

2011-05-03T00:27:00.000-07:00

Tonight I am appreciating life a little more. I am a little more thankful. I am a little more mindful of the blessings in my life. Especially my children. My healthy children. Scarlett included.

Last week, a heartmom friend of mine named Abby had to say goodbye to her son, William aka "Will" succumbed to Congenital Heart Disease. He was one month older than Scarlett. He had numerous health challenges, among them a CHD and Down Syndrome. He struggled through battle after battle, and would come out succeeding time after time over the last two years. Will was a fighter. Will was a miracle.

Last Monday I received news that William had "earned his angel's wings", as we say in the CHD world. He had passed on. He was now an angel. His struggle was over. His fight on earth was done. He was no longer suffering, no longer on a ventilator, no longer connected to tubes and wires. No longer fighting for his life.

Does that mean he lost?

He fought for so hard, so long. and now he is pain free, wire free, tube free. He is free. He is an angel.

I cried when I heard that he had died. I didn't think it would affect me as much as it did, but I'm not ashamed to say that I cried for close to 6 hours that day. I couldn't stop myself. I was heartbroken. I kept thinking about his mom, Abby. I kept thinking about Scarlett. I kept thinking about how fragile life is, and how precious every child is. To cherish those moments because you never know when it will be your last.

Today was William's funeral. It was very painful. There was a large turnout. A lot of heartmoms were there, and a lot of medical professionals from St. Joseph's Hospital were there. Beth was there. and I could count at least 10 other heartmoms, they even mentioned us during the service. I remember at Ethan's funeral, Heidi saying that she was introduced to this sub-culture of the heartworld (CHD community)

Many people don't know about us. Heartmoms. Heartdads. Heartkids.

How I wish I wasn't part of this community, but I am so blessed to be a part of it, and to have met and know the peole I have met and known as part of being a CHD mom.

It is not for me to question why somethings happen. I will never know why God choses for some children to be born with life-threatening illnesses. But all I know is that parents aren't supposed to outlive their children. So, tonight I pray for Abby and the Olsen family who are suffering. They're missing their baby boy, their baby brother, their cousin, nephew, grandson.

Scarlett lost a heart friend, and we paid our respects today as he was laid to rest. God Bless you, William Christian Olsen. May you live happy in paradise where your body is made whole again. Until we meet again.

Look Who's 2!

2011-02-24T19:00:00.000-08:00

Well, it's hard to believe that Scarlett celebrated her 2nd Birthday a week ago. Yes, my little heartbaby is officially in the "terrific" two's (I don't like to say terrible twos, because then you set yourself up for a temper tandrum throwing toddler).

We celebrated her ~actual~ birthday by taking her to Chic-Fil-A to play on the indoor playground. She was like a little monkey and for the first time, I saw her actually hanging from the little gym like they were monkey bars. . . Here's a pic:

Ever since her stent 2 weeks ago, she's had so much energy. It's very noticable to me and Todd. She's like the energizer bunny now.... she just keeps going and going and going. Even when she's sick with a booger nose and a lingering cough (like for the last 5 days), she still runs and runs and plays and plays. It's like now that she has more blood flow to her left lung (via the stent in her LPA), she's just a little ball of energy now. Even more than before, because she was always a toddler "on the go".

We took her to the cardiologist today and we got great news! The echocardiogram looks fantastic and the bloodflow through the LPA looks great. In fact, she's doing so well, we can wait THREE whole MONTHS until her next appointment! So, for the first time ever.... I don't have to take her to the cardiologist's office for 3 months. Seeing as I've been taking her every month for the last 10 months, this is quite a big deal. I'm elated. and Scarlett is happy too. Look at her go:

This was her at the cardiologist's office today running all around the office. It's an action shot because she wouldn't sit still long enough for me to get a pic of her. Okay, actually, she did sit still long enough for me to take this one:

Strangely, she had a major crying fit when Asia tried to do an EKG on her. It was strange. One minute she was smiles and happy, then on the turn of a dime (whatever that means), she was terrified and screaming and saying OWIE! OWIE!.. (when EKGs don't even hurt??!). My poor little daughter is definitely traumatized by the doctor's office. But overall she did fantastic today. The echo went well, the "vitals" went well (blood pressure, pulse-ox, temperature, height and weight).

Speaking of weight... I never posted before but at her pediatrician's appointment for synagist (the vaccine against RSV), Scarlett weighed in at 20pounds 0 ounces. I was so excited! We were able to put her in a forward facing carseat for the first time in 23 months. (2 weeks shy of her 2nd birthday). Well, today at her cardiologist's appointment (3 weeks since she weighed 20 pounds flat, she weighed 20 pounds 13 ounces!!! I'm beside myself with excitement and happiness for my baby.

She's still getting over a double ear infection and is a little fussy tonight (compared to her uber energy at Dr. Pophal's office this afternoon), but overall, she's doing grrrrreat! : ) Thank you for everyone's prayers for my little fighter.

Ethan's Run 2011!

2011-02-19T05:19:00.000-08:00

One week ago today was "Ethan's Run - Hope for Heart Defects". It was a huge success!

A few nights before the event, one of my fellow heartmom friends (who helped Heidi with organizing Ethan's Run) emailed me asking for a picture of Scarlett to use on the mile markers which were to be at each mile marker for the 1/2 marathon. I emailed her the picture on the right side of this blog. The one that says "I'm a heart surgery survivor" that was taken at the zoo last month.

She also asked for name, birthday and CHD diagnosis. Here was the final product:

They put Scarlett's info at Mile Marker #1, so all of those participants who walked the 1-mile Fun Run were able to see her. It was great!! We stopped to take our picture near her mile marker as a group photo.

I had an AWESOME turn out for Team Scarlett! There were over 27 of us! it was like a sea of red t-shirts all there supporting my little heartbaby. I was so touched by the outpouring of support. Friends drove all the way from Tuba City, AZ (which is about 5 hours north of Phoenix), and Tucson (2 hours south of Phoenix) just to join us.

We had walkers, 10K runners, and even one 1/2 marathon runner all on Team Scarlett!

This is Scarlett with my friend Mickey. This picture was taken within minutes of Mickey finishing the 10K with three of her friends. Go Mickey!!

This is Scarlett. I pulled her in a wagon. We walked the 1-Mile Fun Run (Walk).

This is us walking. We were a little late, so we were basically walking alone since the crowd had already taken off before us. But it didn't matter, because we still walked and were still there spreading awareness for CHDs. I even bought 12 heart shaped balloons and taped "Team Scarlett' logos to them!

This is my 27-member Team Scarlett!! What an improvement from last year, when there was only 3 of us (me, Violet and Scarlett). I hope we can get at least a 30-member team every year from now on. And that we get there on time next year too ; )

Team Scarlett

2011-02-11T05:45:00.000-08:00

Team Scarlett's logo for Ethan's Run taking place on 2/12/11

It is CHD Awareness Week Day 5. Tomorrow is Ethan's Run - Hope for Heart Defects. It is a 1/2 marathon, or 10K, or 1-mile Fun Run. This is the second year that Heidi and Greg Skidmore have presented this event which benefits the Congenital Heart Foundation and families of the Scott and Laura Eller Congenital Heart Center. Tomorrow a team of 25 of us will be walking in support of Scarlett and CHDs. Yes, you read that right! 25 people! From as far north as Tuba City, AZ and as far south as Tucson, AZ. Last year for Ethan's Run, I didn't have any support. I walked alone with just Violet and Scarlett.

So this year, I decided to at least ASK my friends, family and co-workers to walk with me. I said we could walk as "Team Scarlett" and I'd even get t-shirts made and everything. To my astonishment, I got takers. 25 takers to be correct. I can hardly wait! I am so excited to have so many people care about Scarlett and CHDs to come out to far, far, far east Mesa, AZ in the early, early morning and in the cold weather to walk with me and Scarlett. : )

I will post all about it tomorrow after the walk.

This is the Ethan's Run logo.

Ethan Greg Skidmore 2/18/09 - 8/21/09 was born one day after Scarlett. Ethan and Scarlett were hospital neighbors during their first open heart surgeries. That is when I met his mom Heidi. Heidi told me that Ethan was born with Hypoplastic Left Heart Syndrome (HLHS), which is the worst of the worst when it comes to CHDs. Not only is HLHS one of the worst CHDs, but Ethan's diagnosis was "very severe". HLHS means that you are born with half a heart. One pumping chamber. It means the left side of your heart is so small that it is rendered useless. Children with HLHS have to endure a series of 3 open-heart surgeries before age 5 to re-route the tubes in the heart to be able to funtion effectively.

Ethan spent the majority of his short life in the intensive care unit of St. Joseph's Hospital and lost his battle to CHD at only 6 months of age. I remember the day I found out that Ethan had passed. I believe I cried for 5 hours straight. I can't believe that mother's like Heidi have to lose their children to CHD. I can't believe with medical technology that there wasn't enough they could do for him. I felt so sorry for her and for him. For the tremendous battle he fought. And I couldn't help but think of Scarlett's fate as well. How much more time do I have with her?... : ( [I know I shouldn't think about things like that, but I do].

In Ethan's memory, his mother Heidi decided to leave a legacy and hold an annual 10K (and 1-mile Fun Run) called Ethan's Run. Last year, Heidi was able to donate $10,000 to the Congenital Heart Foundation raised from Ethan's Run. She's an amazing heartmom.

There are sill 3 days left in Congenital Heart Defect Awareness Week 2011. Have you done your part to spread the word about CHDs?? Here are some facts to help you educate others:

* Congenital heart defects are America's #1 birth defect. Nearly one of every 100 babies is born with a CHD.

* Congenital heart defects are the #1 cause of birth defect related deaths.

* This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.

* 91,000 life years are lost each year in this country due to congenital heart defects.

* The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

* Congenital heart defects occur frequently and is often life threatening, yet research into them is grossly under funded.

* Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.

* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

* The Children's Heart Foundation is the only organization strictly created to fund congenital heart defect research.

* In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

* The Children's Heart Foundation has directed almost $2 million to 24 different congenital heart defect research projects.

* More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

* There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.

* In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Learn the facts! Spread the word! Thanks!

5 1/2 Hour Heart Cath

2011-02-09T17:31:00.000-08:00

We are home now. Thank God it was only an overnight hospital stay. I anticipate it to be a 24 hour stay, but you never now, so I also plan for a more than 2 day stay.

Well, the cath itself took a lot longer than I thought. A LOT longer than I thought. I was anticipating 4 hours. But secretly I was thinking it would take 3 or 3 1/2. So when it took 5 1/2 hours, I was starting to worry that something was wrong. The hospital kept calling me every hour to update me. But mostly it was an "Everything is okay, we're just checking her pressures".... then "Everything's okay, we're just sizing the stent".... then "Everything's okay, we're just running some tests".... So hour after hour after hour, I was thinking, ~everything's okay~, because that's what they kept assuring me.

Well.... little did I know that what *actually* happened was that the camera (that is permanently affixed to the floor in the room) that they use in the cath lab BROKE!.... and they had to call the repair man... and then they immediately called another hospital unit that has a mobile (portable) camera that does nearly the same thing as the "real" camera. It is a high-tech camera that they were able to use to complete Scarlett's cath. THANK GOD!

Because Dr. Pophal did not want to have her come out of anesthesia and cancel the procedure all together. So, (thank goodness), instead, he kept her sedated, with the camera/tube in her groin artery, and waited for the portable camera to arrive. Which took about an hour. I am actually G L A D they didn't tell me this, because I would have been flipping out with worry that my baby was under anesthesia for nothing!

In the end, Dr. P was able to do what he needed to do, and he had awesome results. Sometimes, it's almost child-like (in a good way), how Dr. P gets when he gets giddy/excited about great news in the cath lab. Well, this was one of those moments. When Dr. P saw the results of the echo that they did this morning, he was all but jumping up and down and said "This is exactly what I wanted to see!".

She looks miserable in this pic, but she was actually IV free and doing great.

So, before the cath, the pressure on her right ventricle was at 80%...this is bad. It should be around 20-25%. So, this was considered moderate to severe. After the cath it is now at 40% (HALF!!). Also, the left pulmonary artery was at about 2.5mm before the stent, and after the stent it is now at 7mm. Which means that the bloodflow to the left lung (which was at 28% before) has gone up too. We can't quantify/measure it yet, because that would require a lung perfusion study (which means more anesthesia)..., so that might be next on the horizon. But for right now, she's doing great and thank God we're home.

Thank you everyone for your well wishes, support and prayers. Especially Lou, Susan, Linda, Morrine, Mindy, Jolene, and Cherie. Thank you cousin Luke for watching Violet, auntie Melissa for taking Violet to school, and grandma Elva and Elsa for lighting candles and saying rosarys for my baby Scarlett.

Cardiac Catheterization No. 3

2011-02-08T12:10:00.000-08:00

I write this post from the PCTICU of St. Joseph's Hospital and Medical Center in Phoenix Arizona. My not-quite-2-year-old daughter has been in the 'cath lab' for the past 3 1/2 hours. We held her hand while they put her under anesthesia around 9:20am this morning. I was right there with her this time. Ususally it is just Todd, but this morning, I was there too.

This is the second time I've held her hand while they put her under and it never gets easier. Watching your baby struggle then slowly (or quickly) watching them fade away into a sleepy dreamland. Todd and I both walked away choking back tears.

She is in the cath lab today because at her last cardiologist appointment, Dr. Pophal and Beth said that the blood flow to her left pulmonary artery was at 30% and the bloodflow to her right pulmonary artery is 70% (when it should be 50% and 50%).

Last June Dr. Pophal took her to the cath lab to balloon angioplastly her LPA to help this exact same problem, and it temporarily helped, but over time it has shrunk right back down to where it was before the procedure. So, today, Dr. Popal is going to implant a stent into her LPA to keep it open. She's been in there for four hours now. I hope that everything is okay. I will post more when I know more.

CHD Awareness Week 2011

2011-02-07T20:56:00.000-08:00

Today is February 7th, and that means it is the first day of "Congenital Heart Defect Awareness Week". Which means that I will be doing my part to help spread awareness and be an advocate for my daughter, a CHD survivor. (more than I ordinarily do, of course!)

This past summer I bought some t-shirts online from cafepress.com, One says: "I'm a heart surgery survivor" and the other says: "My sister is a survivor". Scarlett also has another onesie that says "I'm beating Congenital Heart Disease". They were kinda pricey, but they worth every penny, because I love putting them in their CHD Awareness t-shirts. Last Saturday I took them to the zoo and they proudly wore their t-shirts.

These pictures were taken by zoo photographers that are available to snap a shot as soon as you enter the zoo.

Several weeks ago, I wrote (emailed) Arizona's governor Jan Brewer and asked her to proclaim February 7-14 as CONGENITAL HEART DEFECT AWARENESS WEEK in the great state of Arizona. There is a proclamation form that you can fill out online. I did this at the suggestion of the Congenital Heart Information Network. and to my delight, it (the proclamation) was received and approved. Not only that, but I also heard that I am not the only heartmom to make such a request. I was told by the governor's staff that I was one of at least 6 other people who submitted this request. I believe that it's been done for at least the last 4 years. Awesome!

Don't now if you watched the Superbowl yesterday, but if you did, then maybe you saw the commercial with the little kid Darth Vader. In case you missed it, here it is:

Well, I just learned today that the little boy that portrays Darth Vader was born with Tetralogy of Fallot and also has a pacemaker! He is 6-years-old and lives in California. His name is Max Page. Here is a news story they did about him on the Today show this morning:

How awesome is that to kick off CHD Awareness Week?? : )

Well, tomorrow is Scarlett's cardiac catheterization. I'll be blogging from the pediatric cardiothorascic Intensive Care Unit of St. Joseph's Hospital (during CHD Awareness Week). I will post more about CHDs, and more about how Scarlett's heart cath goes tomorrow. Until then, please do you part and help me spread awareness about America's #1 birth defect. Thanks!

Jakey's Blankies

2011-01-22T09:14:00.000-08:00

This is a picture of a "girl" version of Jakey's Blankies.

This is Scarlett holding her ultra soft minky "Jakey Blankie".

This is another picture of the blaket. One side has soft animal print, and the other side has plush pink flowers.

Jake Alan Dennison 1/21/2009 - 2/9/2011

Born with Hypoplastic Left Heart Syndrome [HLHS]

(the most severe Congenital Heart Defect)

Yesterday was the 2 year anniversary of my heartmom friend Liz's son Jake's birthday. He was born January 21, 2009 (one month before Scarlett). He was also born with a severe congenital heart defect (just like Scarlett). Jake fought for his life for 19 days and lost his battle with HLHS on February 9, 2009 [eight days before Scarlett was born].

In Jake's honor and memory, Liz and her family started a heartfelt campaign to leave a legacy for Jake. She and her legion of supporters began to create and sew soft blankets to donate to the babies in the PCTICU of St. Joseph's Hospital in Phoenix suffering from congenital heart defects and undergoing open heart surgery (sometimes multiple heart surgeries).

Click on Jakey's Blankies link

Please, if you have a few extra dollars to donate to Liz in honor of Jake for Jakey's Blankies, you can connect to Liz's blog here: http://tylerelizabethdennison.blogspot.com/ you can also click on "Angel Jake" on the right side of this blog under Heart Friends. Or click on Jake's link under his picture above this paragraph. The campaign only for 19 days.... The 19 days of Jake's life (January 21 - February 9).

Also if you are another heartmom whose CHD baby was the recipient of a Jakey Blankey, please post a picture of your heartbaby with the blanket and post it on your blog and also on facebook. just like I did. Thank you. : )

CT Scan Results

2011-01-18T12:09:00.000-08:00

Scarlett had a CT scan performed on January 5th. They did a cardiac CT scan that included a lung perfusion study to determine the bloodflow from each pulmonary artery to the lungs. She did extremely well. No vomiting, no oxygen, no adverse reaction, no emergency room visits that night. I say that because of the horrible experience we had with her MRI back in August 2010. And her last CT scan had her discharged on supplemental oxygen. But this time she was a champ. That's my girl!

She had a follow-up cardiologist appointment a week later with Beth and Dr. Pophal on January 13th, where we got the results from the CT scan. I was sitting at my desk at work that morning reading over a piece of paper I had scribbled some notes on back in August the day of her botched MRI. The paper said that the cardiologists will be checking her weight for steady (though gradual) growth, monthly echos, likely a CT scan in the next 6 months with lung perfusion study, and possible cath if no improvement.

It was kind of a coincidence that I found and read that note on that particular morning. Because when I re-read it, I realized that that team of docs really knows what they're talking about... meaning, so far everything they've told me has basically come to pass. So when we took Scarlett in for the echo and clinic appt last Thursday I was sort of expecting them to say that she needs another cardiac catheterization.... and my expectations were met.

The CT scan revealed that the bloodflow to the LPA (left pulmonary artery) was at 27%, and anything below 30% is considered problematic (concerning). So what they want to do is take her to the "cath lab" and balloon angioplasty her LPA, just like they did 8 months ago, except this time they will also insert a stent to keep that artery open.

Normally, I probably would've started crying my little eyeballs off, but since I had just read that note I jotted down in August, I was anticipating this news. So instead of getting depressed and scared, I was very stoic and asked when they had to do this? Beth and Dr. Pophal said in the next month. And I said: as long as she's not in there for her birthday, I'm fine!

So, right now I'm waiting to hear back from Juanita (the surgery scheduler) to schedule her cath. I still haven't cried yet, but it will probably hit me later and I'll probably fall to pieces just like I always do whenever we have to put Scarlett under anesthesia.

Relief

2010-12-09T20:33:00.000-08:00

19 pounds, 7 ounces, and no foreseeable surgeries for ~maybe~ up to a year!

I took Scarlett to the cardiologist today for an echocardiogram and a clinic appointment. It was such a great visit! I feel like the weight of the world has been lifted from my shoulders. For the last 7 months, I've been stressed, tearful off-and-on and practically in a depression regarding Scarlett's leaky heart valve (that Dr. Pophal told me was regurgitating after a mere 7 months after her last major open-heart surgery).

As you all know, I was told all along that Scarlett will need multiple open heart surgeries throughout her life to replace the pulmonary artery/valve that never formed in utero. I was also told that the way that they know that its time for her next surgery is that her valve will “spring a leak”. BUT TODAY I was told differently.

But allow me to digress about the constant fear, heartache, and stress I’ve been in ever since May this year. Ever since May, I've gone to bed with tears in my eyes thinking about Scarlett's future. I freak out at the slightest signs of illness thinking to myself "is she in heart failure??". We've gone through a heart cath (June) and a botched MRI (August) and at least 8 echos/clinic appointments just to keep a mindful watch on her Left Pulmonary Artery (LPA) and the pressure on her right ventricle (RV). So basically once a month, I have to take her in for echos and doc appts.

And let me tell you…. ECHOS SUCK!! Scarlett H A T E S them.

She cries, and cries, and cries. She struggles, and whimpers and just plain hates being prodded with the ultrasound probe. Plus, some ultrasound techs are better than others. I happen to LOVE Gary, and I won’t say anything *bad* about the other u/s techs, but let’s just say I make it a point to ask specifically for Gary.

Well, guess what-- Gary wasn’t there today… or the last time. Which makes my clinic appointments that much more stressful. Luckily today “Christopher” did a good job. And Scarlett did a great job as well. She was mostly accommodating and calm throughout the 40 minute procedure (ultrasound of her heart). [thank God!] She only got upset for the last 10 minutes or so.

I of course just have to look at the ultrasound screen of her tiny beating heart, and I get tears in my eyes. I hope and pray that it hasn’t gotten worse. I look at the red and blue blotches of bloodflow on the ultrasound monitor and I swallow the huge lump in my throat and wipe away the tears streaming down my cheeks as I wish that she didn’t have to go through this every single month. I just hope and hope that the leak hasn’t gotten worse and that she has more time before they cut her open again.

Well, my prayers worked. Everyone’s positive energy and thoughtful prayers worked. Beth (Scarlett’s cardiologist/nurse practitioner) said that the leak looks the same. Meaning: status quo. WOO HOO!. Yes! Thank God! Thank you, thank you, thank you!

Beth said that the leak is still moderate or even mild at this point and that the pressure on her right ventricle is the same. No change. (yessss!) This is so nice to hear. But she also said she wants to do a CT scan/lung perfusion study next month to get a better idea about the LPA regurgitation and the RV pressure. So we’re gonna schedule that procedure soon. Then came the best news of all…. (even though it is nothing “new”… it’s just new to me).

So Beth was patiently explaining Scarlett’s anatomy to Todd and me. She was showing us on the little plastic model of the human heart that they have in all their exam rooms. She was explaining what was happening (even tho we’ve heard it all before, it’s nice to hear again when our heads are clear), and what needs to be done about her leak, and what causes her leak and her pressure on her RV. Then she said it. “people with her defect will *always* have leaks and if anyone tells you differently they’re full of it”.

Whoa…

Repeat that last part. Yes, people with TOF/PA will ~always~ have a leak… it just depends on how bad of a leak it is.

Really?

I said “Why the hell didn’t someone tell me that TWO YEARS AGO!?~!” I said 2 years ago (November 18, 2010) when Dr. Alboliras and Dr. Nigro told me about her heart defect, they said that her homograft will start to leak and that’s how we know when it’s time (or near time) for her next surgery. So for the last 24 months, that’s what I’ve understood. That’s why I’ve been so upset/depressed/stressed/anxious, etc…

When she said that “she will always have a leak”, I felt a huge sigh of RELIEF. I thought She’s gonna be okay, stop stressing. Then Todd said “So, looks like she won’t be having surgery in February?”, and Beth says “Who told you that?!”, and we both say in unison: “Dr. Pophal”.. and she says “When did he tell you that?”, and we say “in August, he said: ‘she has at least another 6 months before we consider surgery’” So it’s been burned in our brains that she will have her next surgery in the first quarter of 2011.

NOT ANYMORE!!

The angioplasty that Dr. Pophal performed in June is helping! The Digoxin is helping! The leak is still there, the pressure is still there, but it is manageable. She is not in immediate danger. Beth said that the CT scan in January will give them a better idea of what the echocardiograms can’t. She said the way she is going now, she doesn’t see surgery in Scarlett’s future for at least another year (up to a year).

Todd and I were sooooooo relieved. You should literally feel the stress lifting from our shoulders as we were finally able to relax and breathe for the first time since we heard the word “leak” in May of this year.

So, I am happy to report that Scarlett is doing fantastic.

She is gradually gaining weight, still on her growth curve of negative 3rd percentile (not quite on the growth charts yet). She’s comfortably wearing size 12 months clothes and size 5 shoe. She nibbles on everything, but isn’t a huge eater, but neither is her sister. Still in a backwards facing carseat, but she doesn't seem to mind it since she has this adorable pink doggie mirror she can look into, thanks to one of my co-workers (Thanks Roxanne!)

She is a happy, -healthy-, toddler who is learning new words everyday. She can now say “Thank”, for “thank you”, and “shoe”, and ‘I-don’t-want-it”, but it sounds like “I-doh-wanna!!” Her new favorite word is “NO!”, and of course “MINE!” But through it all, she is still the calmest, quietest, nicest, happy little baby that there ever was. Even tho her older sister is rubbing off on her and sometimes she gets a little attitude, she is still for the most part, just happy to be alive.

Today was a good day. I am going to bed thankful and happy.

2 Years Ago Today

2010-11-18T22:05:00.000-08:00

I was sitting at my desk at work this morning, when I glanced over at the calendar and saw the date. November 18. It doesn't matter that it is November 18, 2010, because November 18th is all that matters. November 18th. A day that will live in infamy. A date forever scarred in my heart, mind, memory and the day that changed my life forever. November 18, I get a lump in my throat and tears in my eyes just thinking about that horrible awful day.

What happened on November 18th?

It was a chilly autumn morning in Phoenix Arizona. Those days are usually hard to come by even by November 18th. I woke up, got dressed and headed for a fetal echocardiogram appointment that unfortunately for me, did not end how I thought it would. I was so unsuspecting. I was so oblivious. I was so vulnerable. and I was so confident that nothing was going to go wrong. So sure of myself, that I went to the appointment all alone.

I thought to myself, everything is gonna be fine, they're finally gonna tell me once and for all that I'm just a worry-wart and my baby is fine. They're gonna tell me to stop worrying and stressing that something's wrong with my baby. They're gonna put all my suspicions to rest and everything is gonna be fine.

Boy was I wrong.

I arrived at the Scott and Laura Eller Congenital Heart Center in Phoenix Arizona at about 8:00 in the morning. First appointment of the day. I was bright eyes and busy tailed not knowing what the future held. I was 6 months pregnant and I had been diagnosed with a single umbilical artery. I had been told for approximately 2 months that everything looked fine. I was having the fetal echocardiogram done just so they could "shut me up". They were willing to do the echo based solely on the Single Umbilical Artery.

I should have known something was wrong when 4 differnt techs/docs/students came to assess the monitor on the ultrasound machine. Yet, I was still convinced that everything was okay with my baby. That I just needed to get this over with. I was told the ultrasound would take an hour and a half. So I wasn't the least bit concerned when they popped in the DVD "Pirate's of the Carribbean". I watched 3/4ths of the movie before Dr. Alboliras walked in to complete the ultrasound.

I thought it was all routine. I thought nothing of the doctor being in the room. He asked me if anyone had told me that there was something wrong with my baby, and I answered him...no. He said "then why are you here today?", and I answered, "because I want to make doubly, triply sure that my baby's heart is okay because I have a single unbilical artery". He than asked "Are you alone today?", and I thought ~why the heck is he asking that question?~... and I answered "yes". I even breifly thought "WHY?... DO YOU HAVE BAD NEWS TO GIVE ME?", but I didn't voice that concern. I just said "Yeah", when he said "so there's no one waiting for you in the lobby?"...so knowing I was all by myself, he just said "okay, we're done here, let's go into another room to go over the results"

I wiped the ultrasound goo off my pregnant belly. I grabbed my purse and coat, and walked into a consultation room around the corner. Then began the absolute worst experience ever. and I tear up just thinking about it and reliving it in my memory.

I took a seat. Dr. Alboliras told me "It's a good thing you came in today... because your baby has a complex congenital heart defect and will probably be born blue and will require surgery to allow blood to flow from her heart to her lungs". I just sat there dumbfounded. Complete disbelief. Huh? What did you just say?

Then he says how far along are you? and I say 26 weeks, and he says "yes, that's a little bit to far long to consider terminating the pregnancy"... and I'm a complete trainwreck. I was bawling my eyes out. Then I asked him to explain again what was wrong. I heard "big hole in her heart"... (in between Pulmonary Atresia, Tetralogy of Fallot, unoxygenated blood, blah, blah, blah...)... and I just fixated on "hole in the heart"... so between my tears, I said "This is common, right? This happens all the time?". and that's when my world came crashing down around me. He says "No"...

"This is extremely rare..."

and the rest is a black cloud blur of heartache, headache, and uncontrollable sobbing. All. Day. Long.

I couldn't even talk on the phone to tell Todd that something was wrong. I couldn't even get the words out I was crying so hard. I was absolutely devastated. I didn't even know that my nightmare was just beginning, and that it actually gets worse from here. I was just absolutely blown away by the news.... and I was all alone. No husband, no sister, no mother there to hug or console me. I was crazed with greif. I was hyperventilating. I was just so taken off guard. I never expected this to happen. I was unprepared.

Yes, November 18 is not a good day for me. It is a day that I look back on with sorrow. It was the day that mourned the loss of a healthy child. It was the day that I fantasized about a little baby, a little toddler, a little girl, a little teenager lying helpless in a hospital bed connected to tubes and wires fighting for her life. Alone and scared. Without her mommy. In pain. Suffering. Praying for survival. Praying for her heart.

I don't even know how I drove home that day. I cried for hours and hours. I don't think I ever stopped crying that day. It was just a complete blubber-fest. I remember my best friend Kristy came over that night and hugged me and tried to make me feel better. I remember showing her the pictures that Dr. Alboliras drew for me. The picture of a normal heart, then the picture of Scarlett's heart. I still have those pictures.

November 18. The day I guess I un-officially became a heartmom. A label I never thought I would embrace 2 years later. Yes, this is a day I will never forget as long as I live. I can't even go into that echocardiogram room without getting teary eyed. That's where my world came apart at the seams. That's where a team of 4 cardiologists diagnosed my baby in utero with a severe CHD. The sickest of the sick. The "high risk" CHDs.

I can't belive how fast the time has flown. It's been two years already. But the pain associated with THAT DAY are still fresh in my mind as if it happened last week. I'm sure all heartmoms have similar stories and they may they also know the exact day that they found out about their child's heart defect. and the feeling of complete helplessness and hopelessness they felt at that precise moment. It is awful. You never forget. Never.

So today I'm remembering 2 years ago. and I am thankful and grateful that I found out that day. I'm glad I knew what to expect. I'm glad I knew what I was in for. I'm glad that there was a team of doctors ready to care for Scarlett the moment she was born. I am humbled that modern medicine has allowed me to have that knowledge on November 18, 2008. Even tho I still consider it the worst day of my life. I am still grateful that I knew before she was born.

"Off Road"

2010-10-20T20:41:00.000-07:00

Todd took the girls to the zoo on Monday. Some of the paths are paved, and some aren't. When he took the stroller off the paved path, he would say "Off Road!", to which Scarlett would reply "Ahhf Roh", which sounded extremely smilar to Off Road.

Last week, I was taking her picture and I was saying "Cheese!" as I pointed the camera at her, and she said "Cheese!". Also last week, my mom was at my house and kept telling her "say grandma, say grandma", and Scarlett said "Grah-mah...grah-mah" She's definitely repeating words and sounding more and more like a talking little toddler everyday. She can also say please, or her version of please which sounds like "peez".

It is absolutely precious how she wants to mimic and repeat everything she hears. I had to post about it. Todd said when they were at the zoo, he was acting like a monkey and making monkey noises, and Scarlett was right there making monkey noises with him and Violet. (I was at work and didn't get to go to the zoo with them).

I swear if you didn't know better, one would never know that she has a complex congenital heart defect. She is just a happy little carefree 1 1/2 year old. Her next cardiologist appointment is scheduled for early December, which means she gets a 6 week break from echocardiograms. She does however still have to go the pediatrician for synagist shots because RSV season starts next month and she is still vulnerable to dire consequences if she contracts this disease (because of her leaky valve and the pressure on her right ventricle), so she has to go in for monthly RSV vaccination shots starting in November.

We have started her on Digoxin too. So far she gets .4ml twice a day. I don't know how much it's helping, but I'm hoping for some good weight gain in December... maybe we'll be having that 20lb pizza party?? Here's to wishful thinking!

One Year Ago Today

2010-10-12T19:07:00.000-07:00

Today is the one-year anniversary of Scarlett’s second surgery.

One year ago today I handed my 7-month old daughter over to the surgical team at St. Joseph’s Hospital for a grueling, complicated, risky, complex and difficult 8 hour open-heart surgery.

I can hardly believe it’s been one year already. For someone who has a complex Congenital Heart Defect, and who’s endured 2 open-heart surgeries before age 1, Scarlett is doing fantastic. She is a happy, thriving, affectionate toddler who is closer and closer to talking everyday. I think she learns new words all the time, but I don’t understand her well enough to recognize that she’s saying “car” or “cat” or “ball”. She definitely has “baby” and “momma” down crystal clear.

Everything about Scarlett is petite. Her weight, her height, her smile, her giggle, even her temper. As any mom does, I am constantly comparing my daughters to each other. By the time Violet (my first born) was Scarlett’s age, she was the same size [evidentially I make small babies, heart condition or not], but she was 100% different…personality wise. At 18 months old, Violet was hyperactive, not only was she ultra energetic, but she was also exceptionally volatile: hitting, pinching, biting, kicking, throwing toys, slamming doors, and at a moments notice would pitch completely unpredictable temper tantrums that would make anyone want to reach for Jim Beam.

At the other end of the spectrum there’s Scarlett. Scarlett is calm. Happy. Affectionate. She is just the most quiet, tranquil, introverted, and peaceful little toddler’s you would ever meet. She has a normal/average amount of energy for a 19 month old especially when compared to her sister who runs around the kitchen island and jumps on furniture like she’s on speed.

Don’t get me wrong, Scarlett is enormously clingy and screams her little head off if anyone other than mommy or daddy try to hold her. She's been that way ever since the events of one year ago today.

One year ago today she was ripped from her safe and comfortable home to be thrown into an environment that was scary, awful, foreign and life altering. She was hurt. She was poked, proded, cut open and scarred for life literally and figuratively. She was never the same.

Before surgery (10-12-09), Scarlett didn't like binkys. After surgery she is a pacifer junkie. Everytime gets fussy, I pop a binky in her mouth and she's happy as a clam. She can't fall asleep without her binky. Everyone in my house knows that Scarlett loves her binkys.

She is also a cuddle bug. She loves hugging stuffed animals. Teddy Bears, kitty cats, even dolls she loves hugging and giving love to her dolls, she's super affectionate.

Before surgery, she was rather independent. As far as a 7 month old baby goes, but after surgery she suffered from separation anxiety...big time. She would fall to pieces if she wasn't in arms reach of Todd or me. and it is unheard of for anyone else to hold her. She wants her mommy and daddy. Only. It's ben one year already, and she is still shy of strangers (unlike her social butterfly 3 yr old sister). She has finally [after one year], let certain special people hold her like grandma or uncle Kevin, but for the most part, she only wants mommy, daddy or Aimee [her babysitter].

Yes, today is a milestone in Scarlett's book. She is doing well and thriving one year later. Notwithstanding the fact that she still has a moderate leak (regurgitation) in her homograft and now moderate pressure in her RV, she is alive and doing well. And one year later, I am grateful to the hospital staff at St. Joseph's for saving my baby's life. It saddens me to think that we have to do it all over again in less than a year, but when I think of today (one year post-surgery), it gives me hope that she's gonna be okay. I believe in the power of positive thinking. She still has a long road ahead of her, but she has come all this way already and she's gonna make it out on top. I love you Scarlett. You are and will always be my hero.

Apology

2010-10-11T11:40:00.001-07:00

I have to apologize for my last post. I was venting on a public forum, and I did not mean to offend any other heartmoms or other mothers of sick/ill children. I was merely trying to express my dislike concerning mother’s of healthy children who complain and grumble about trivial things such as household chores for the baby (cleaning high chairs, doing laundry, changing diapers etc), planning birthday parties, or taking your child to the doctor for regular checkups/vaccinations.

If these mothers only knew what they had [if they appreciated the gift they had] they wouldn’t complain so much. Because there are mothers out there who wish their child was alive to change their diapers, or to fold their laundry, or take them for their shots. It infuriates me that they could gripe about something so pointless and petty when they don’t realize how happy and thankful they should be that they have a healthy child (colds, infections and normal childhood illnesses aside).

I, in no way, meant that any heartmom’s journey is easy. And if I implied that, then I apologize profusely. No heartmom’s journey is easy by any stretch of the imagination. CHD is a lifelong process. And requires lifelong follow-up and care with a cardiologist for something they (the child) had no control over.

As a heartmom, yes, I do get jealous of other heartmoms whose children are fully repaired, but my jealousy is immediately quashed when I think what that baby had to endure to become fully repaired. I only say that I’m jealous, because I wish I had what they have (the meaning of jealousy)… a quasi-sense of normalcy. In other words, I wish my child only had to go in for echocardiograms/cardiologist check-ups quarterly instead of monthly.

But I don’t think anyone has it better or easier than I do.

Going in for cardiologist check-ups and not knowing if they will require another surgery is agonizing. Being a heartmom is extremely difficult. The day they tell you that your child has a CHD is one of the worst days in your entire life. We all know the feeling, of helplessness, hopelessness, confusion, fear, guilt, and sorrow.

And I try to live with an attitude of gratitude.

I am happy and thankful for each and every minute I get to spend with Scarlett. I know that every day with her is a gift... so even when the pressures of everyday life get to me, I remember that it could be so much worse… she could be taken away from me… she could be a CHD angel.

So again, if I made anyone upset or mad with my last post please accept my sincere apology. I didn’t mean to be negative, and I certainly didn’t mean to disrespect, insult, affront or slight in any way any heartmoms, or mothers of children with true medical afflictions.

Heartmom Snob

2010-10-11T00:20:00.000-07:00

I think I'm a snob. Because when I meet new parents who have healthly children who ~complain~ about the trials and tribulations of parenthood, I think to myself... you weakling. I look down my nose at them condescendingly as if to say: You have no right whatsoever to complain about your child. You have no idea what it is like to watch your child be poked countlessly for IV placement, You have no idea what a real 'sleepless night' is because your child is in the ICU, You have no idea what it's like to feed your child through a tube, You have no idea what it's like to have a heartbaby. Stop complaining about your healthy baby.

Sometimes it makes me so angry to hear other moms complain. HOW DARE YOU complain about what a pain your child is? Do you have any idea what a miracle you have? Do you have any idea that there are mother's out there who will never get to celebrate their child's birthday because their child died as a result of complications from their heart defect? Do you have any clue whatsoever?

How can you sit there and complain about changing diapers, or losing sleep because of a newborn, or that breastfeeding is 'too much work'. Try walking one day in my shoes. Try pumping exclusively for 13 months. Try inserting a nasal-gastric tube down your baby's nose, Try lugging around an oxygen tank, and a pulse-ox machine with you everywhere you take your baby. Try not being able to hold your baby for 12 hours after she's born because she's whisked away to the NICU.

Yes, I most definitely would have to say I'm a snob. Because I am. I do think I'm better than those mothers. I do think I have more patience. I do think I treasure life a lot more. I do think I count my blessings more than my prbblems. I do think I am grateful for the little things. More than the 'normal' parent.

They say the grass is always greener on the other side. Well, my grass is green. To someone else, I have the perfect life. I especially think this with my other heartmom friends. To some heartmoms, my grass is greener. My child is not on any medications. My child is developmentally on track. My child is not on a feeding tube or oxygen. And most importantly, my child is alive.

But to other heartmoms, their grass is greener. I talk to some heartmoms and ask "Is your child considered totally repaired?", which means, "Does your child have to have any more surgeries?", and when they answer yes... meaning, no more surgeries, just annual or semi-annual cardiologist visits... I get a little jealous... (I think.. god, you're lucky)... and I get a little snobby (I think...p'sh, that's it? you're done?..no more worries?), but mostly I get a little sad that it's not fair that Scarlett is not done, and her journey has only begun.

So to me, Heartmoms of babies with CHDs who are repaired early in life (TGA, TOF, VSD etc.) they have the lawn with the beautiful, plush, green and perfectly mowed grass that I envy, because my lawn has weeds, crab grass and ants.... But to moms of other more critical babies (HLHS, DORV, PA, etc), especially moms whose children also have chromosome abnormalities such as DiGeorge Syndrome, Smith Magenis Syndrome, Shone's Syndrome, or Down Syndrome... I have the perfect green lawn that is to be envied.

My daughter is walking, running, climbing, eating on her own, sleeping on her own, babbling and acting "normal". What they wouldn't give for some normalcy. A life for their toddler free from g-tubes, oxygen, vomiting, infections, and hospitalization. What about those mothers of children who need[ed] whole new hearts? Imagine the torture, pain and anxiety of knowing your child is in heart failure and nothing will save them except a new heart? Just imagine that stress.

Makes you want to count your blessings. and stop bemoaning the small stuff. Which brings me to the title of my post. Snob. Yes, I'm a snob. I know it's probably not right, but Yes, I do think a little less of people who can whine about the stresses of being a mother... when they have no idea what real stress is. Last week, I heard someone say something about being stressed (caused by their baby)... and I said "Why, are they in the hospital? to which they replied "no", and I said "Is everything okay? Do they have to have surgery?" again I heard "no"... so I said "Then what the h*ll is so stressful?", because to me, everything else is trivial. Having your 8-day-old's chest cut open to save their life... THAT's stressful. Handing your 7 month old baby over to the surgical team for a 7-hour, complicated second open-heart surgery...THAT's stressful.

Measuring out syringes and feeding your baby through a tube and worrying about them pulling out their feeding tube? THAT'S stressful. Worrying that your child might pull out their oxygen nasal cannula overnight and their oxygen saturation levels will take a dip and jumping everytime the pulse-ox alarm goes off? THAT's stressful.

So compared to THAT, What do these people consider stressful? Because to me, it's not. It's just spoiled, selfish people complaining that they didn't get enought beauty rest. It's just ungrateful people [who probably shouldn't have had children in the first place] acting immature. Do I think I'm better than these people? You bet your sweet patotie I do. I treasure my children. I don't sweat the small stuff. I don't allow minor things to stress me out. and I always count my blessings not my problems. Life is to fragile, precious and SHORT to be negative and complain and to be jealous that the grass is always greener. Live for today. Live in the now, and always have an attitude of gratitude.

Crystal Ball

2010-09-26T22:03:00.000-07:00

Sometimes I wish I had a crystal ball. Not because I'm selfish I want to forsee the winning lottery numbers (although that would be nice too),... Not because I want a fortune teller to tell me what happens in the future as far as riches, wealth, career, or to see my fortune.. but because, I wish I knew that Scarlett was going to be okay for the next 6 months.

It has been 4 months since Dr. Pophal told me that she has a leaky heart valve. I wish I had known 4 months ago that she will be okay and not to stress or worry or freak out about small things like sweating or blue fingers and lips.

Speaking of blue fingers and lips... The other day my mom and the babysitter fed Scarlett a blue popscicle. Which consequently turned Scarlett's lips and fingers blue. I came home from work and noticed that her hands were blue but I dismissed it because it was her palms and I figured she got ahold of a blue marker. But then when I was changing her diaper I noticed a slight blue hue around her lips. A blue moustache haze. and I immediately freaked out and started panicking. Because I know that blue moustache means not nough oxygen to her blood.. which means something's wrong. So I grabbed her blue hands and flipped them over and analyzed her fingernail beds in fear and panic. They were pink...and normal.

My stress was alleviated. I rolled my eyes and deduced that SOMEONE gave her a blue popscicle or something like a blue popscicle. Sure enouch my mom fessed up. I posted on facebook that night "The fastest way to give this heartmom a panic attack is to feed my baby a blue popscicle and not tell me!" I hereby decree that blue popscicles are banned from my home!! ; )

But seriously... I wish I had a crystal ball that I could look into and know that she will be okay until February 2011. Or even April or May 2011..., so that I wouldn't freak out about every little thing that I think is a sign of heart failure. I guess that is still kind of selfish. It's not necessarily knowing the lottery numbers, but it is giving me peace of mind that she is going to be okay for the next 6 months, so that I can rest easy. That's all I ask. Just to know when her next surgery will be so I can relax a little. Then again, of course I wish that she never had to have another surgery ever again.

To dream the impossible dream. That she will be okay. That she'll never have to be cut open again, that her heart will repair itself, that she won't need another surgery, CT scan, Heart Cath or MRI..To imagine and wish, and hope and pray and dream that she could be a healthy normal child. That she didn't have wires holding her chest shut. That she didn't have regular monthly cardiologist visits, regular echocardiograms. That she'll live to a ripe old age and never have to worry about her limitations and never have to worry, and wonder and fear "when is the next surgery?", "How long will this one last?"

So, yes, I truly wish I had a crystal ball that could tell me how long she has 'until the next one'. Because living in constant fear of the unknown is not a place for anyone to be. I don't wish this anxiety and fear on my worst enemy... okay... maybe my WORST enemy, but even then, why would I want anyone to live like this? Even now, peole ask me "How's the baby doing" [obviously these people don't read my blog!], and I say, "Well, she's doing okay, but she has a leaky heart valve and might have to have surgery in the next 6-8 months", then my voice gets shaky, and tears well up in my eyes, and I say "I'm sorry, I get emotional when I start talking about it"... then sure enough I start crying. I'm such a pansy.

Well, of course, I don't have crystal ball, and last time I checked, they're not for sale on Craigslist. So, I'm left to just take each day as it comes and just treasure the time I have with Scarlett because she is my little miracle baby and heart warrior. She is a survivor, and she is my hero.

Cardiologist Update

2010-09-04T04:09:00.000-07:00

I took Scarlett to the cardiologist Thursday and had good news for a change. Either that, or I'm just looking on the bright side that it wasn't *bad* news again. Dr. Pophal said that her overall heart function is the same. Meaning, it is not better, but it is not worse either. Status quo. She still has the leak, and there is still pressure on her right ventricle, but for now, she is still gaining weight (although VERY GRADUALLY), and she is not in any immediate danger or threat of surgery in the near future. Dr. P said that she probably has at least 6 months..... Which believe it or not was a huge relief.

Because after that botched MRI, I wasn't sure if we were looking at surgery for Christmas or right after New Year's. Seeing as her heart went from no leak to 'moderate' leak in 5 months, I guess I figured it would go from moderate to severe in another 5 months. But as it looks, six months from now is end of February/beginning of March which means it would be at least 10 months from the day I heard "she has a leak".

At the same time, even though she probably won't need another surgery between now and March, they still want to see her every month for weight checks, and echos to check on the leak and pressure. I can handle that. Dr. Pophal said that we need to get her to gain some weight before her next surgery. Which brings me to my next topic.

Scarlett weighed approximately 18 pounds 4 ounces. She only gained 4 ounces in a month, which is still progress, but very minimal progress. We talked about her nutritian, and about changing game plans to try to get her to eat. Dr. Pophal is going to put her on a heart medication called Degoxin, which will help strengthen her heart and make her feel better (& hopefully increase her appetite).

I barely gave her her first dose on Friday night, so we'll see how it goes.

Eye Twitching

2010-08-23T22:52:00.000-07:00

Needless to say, I've been under a little bit of stress lately. And by lately, I mean ever since Dr. Pophal told me that Scarlett has a moderately leaky heart valve. I was flipping out the day he told me, but I tried to play it cool, But within a week, I was losing focus at work, unable to concentrate, flaking on things I normally don't flake on... and according to my co-workers, I wasn't acting like myself.

Which lead me to write the email to Dr. Pophal and Beth. The email basically said that I'm uber stressed out about her leaky heart valve and I'm literally losing sleep over it. That's when Dr. P said that he wanted to see her back in a month to check for an echocardiogram. If the echo was the same or worse, he wanted to do balloon angioplasty to try to help her LPA increase bloodflow and decrease the regurgitation (leak).

But as we all know, despite the heart cath (balloon angioplasty), the leak remains. So, then it was stress wondering how much it's leaking, and how much pressure is on her right ventricle, which we were told we'd know after an MRI. Well, if you've been following me, you know that her MRI did not give us the answers we had hoped. (Then of course to add insult to injury, she ended up in the Emergency Room as a result!).

Well, now, we have to rely on echo's and weight checks to determine when Scarlett is in heart failure. WHICH TOTALLY SUCKS! I was so hoping that the MRI would give us some sort of time frame. A time frame as to how much time she has until her next surgery. 3 months? 6 months? 9 months? one year?... But now, we have to take her to the cardiologist every 6 weeks for weight checks. Because when she starts to plateau (no weight gain at all), that means her heart is in distress. And we also have to take her for echocardiograms (which Scarlett hates!), to see the leak and the pressure. An echo can tell us whether the leak is mild, moderate or severe, but an MRI would have been so much better. An MRI would have told us HOW MUCH it's leaking and HOW MUCH pressure its causing on the right ventricle.

So, for the last month off-and-on, my left eye has been twitching. It's basically unnoticeable to anyone other than me, but it's there. I googled "eye twitching", and it said it's caused by severe fatigue, or STRESS. Hmmm...really? I can't imagine why I'd be tired, or under stress? Can you?

This is Scarlett doing Itsy Bitsy Spider. It's her favorite song. : )

She loves Doritos.

The hospital gave her this shirt last November at the C.H.I.E.F. graduation. It says "St. Joseph's Fixed My Heart". It fits her kind of small, but it still fits her because she is kind of small... underweight that is. But she's still growing and still gaining, so I just have to pray that she continues to grow and gain, because when she stops gaining weight, then it's time for surgery number 3. : (

Better Today

2010-08-18T09:48:00.000-07:00

I'm happy to report that she's feeling much better today than she was yesterday and last night. I was very worried about her last night. When her fever spiked to the point where even after I put her in the tub, she was still burning up I knew I had to take her to the ER. Then after her bath, while she was wrapped in a towel, she started dry heaving again, but this time rust colored bile/mucus came out. You guessed it... blood.

I didn't know it until last night, but yes, she had gotten so to the point of puking blood, that's when I almost called 911, but I paged the cardiologist, an hour earlier and she said if she didn't improve in an hour, that she'd call St. Joe's and tell them that we were on our way. Laura said we didn't have to call 911, but that's how scared I was.

My sister rushed me and Scarlett to the hospital and Todd met us there because he was at work. They made us wait in the lobby for a few minutes then took her back to peds ER. They said that the blood was probably from her throat from being intubated (breathing tube).

I took her to the ER for 3 reasons. 1.) she needed a Tylenol suppository 2.) She needed IV fluids to rehydrate her 3.) she needed anti-nausea medicine. By the time we got to the ER, around 8:00pm last night, she was so dehydrated that the nurses couldn't find a vein to put the IV in. They had to poke her 3 times and use a special vein finding light to find a vein. She was screaming her poor little head off everytime they poked her with the needle and searched for a vein, but NO TEARS WERE COMING OUT. They said that when you're dehydrated it makes your veins shrink and hide.... grrrrreat. Poor little baby.

After they finally got an IV in and got the Tylenol in her, she immediately started doing better. She was so lethargic and listless, but after a little fluids and when the fever finally broke, she had a little bit more life in her. She looked absolutely pathetic and pitiful.

The ER doc called the cardiologist and the on-call cardiologist said because of her fever and her dehyration, he wanted her to stay the night for observation. We're up in room 17. It was close to midnight by the time we got up here. She slept pretty well through the night, only woke up a few times, but settled down pretty good.

This morning they gave her 2oz of Pedialyte around 5am, and she's kept it down so far. Then around 7:30, she drank one more ounce of Pedialyte. and at 8 she took 1 ounce of whole milk. Keeping it all down so far. They said that if she can keep the milk down, they'll let her go home today. But, boy what a rough 24 hours it has been for my poor little baby.

Worthless MRI

2010-08-17T22:42:00.001-07:00

As I write this post, Scarlett sits on a Emergency Room hospital room bed connected to an IV which is rehydrating her from the miserable morning, afternoon and evening she's had barfing all day. Then to make matters worse, if you read my previous post you know that Scarlett's MRI was completely worthless.

Right after the MRI nurse released her (even after she puked), we immediately walked over to the Scott and Laura Eller Congenital Heart Center to talk to Dr. Pophal. I was actually very upset that no one warned me that this might happen. I was mad because Dr. Pophal didn't say "we may or may not get the answers we need depending on whether or not they are able to take the pictures they need"... I'll be honest, I was livid. So I wanted to know what the heck we were gonna do now that we don't have the answers to the questions we went in for the MRI to begin with.

Dr. Pophal was very professional and talked to us and explained everything to us. What happened was like the movie "The Perfect Storm". Meaning, the reason they weren't able to finish the MRI and that all the pictures came out black (full of shadows) was because the wires holding her sternum shut combined with the clips on her ribs and the coils in her heart are just enough to cause the MRI machine to be unable to take quality pictures.

So basically there was absolutely to way for Dr. Pophal to know that an MRI would be completely worthless. Not only that, but it almost makes no sense. Dr. P said that they have MRI'd kids with more metal in them than Scarlett just fine...no problems. So it makes no sense why it wouldn't work for her. But like the movie The Perfect Storm, all the factors had to be aligned to cause a storm like that, well that's just like Scarlett's chest.

Unfortunately, an MRI isn't possible. So, the whole purpose of the MRI was to quantify how much is leaking and how much pressure on her right ventricle. Now, to get these answers, we have to rely on echocardiograms and CT scans. I talked to Laura (Beth's replacement while she on maternity leave) said they have a game plan. Which includes weight checks every 6 weeks and an echo every 3 months. Plus we need to be aware of heart failure symptoms.

It just really sucks that she's now super sick from a worthless MRI. They're admitting her because she's been barfing all day and now has a fever of 102.5 not only that, but she's so dehydrated she's not even producing real tears when she cries. The ER doc is going to admit her for observation. We'll be up on the 7th floor PCTICU. BTW: I'm typing all of this from my hand held Blackberry. Wish I had my laptop here!

Worst MRI Ever

2010-08-17T15:06:00.001-07:00

So, we get to the MRI lab, check-in, wait, they take her back, we go out to the lobby to wait the one and a half to two hours it'll take them to get all the pictures they need. After about 15 minutes we leave and go get something to eat. We're back in 30 minutes from the hospital cafeteria. When we get back Todd asks the receptionist how she's doing. They tell us she's in recovery and we can go back in 15-20 minutes.

So, about 15 mins later they call us back. She's in a metal hospital crib waking up from the anesthesia. We're right there to greet her when she comes to. She has an IV in her right hand and a pulse-ox on her right foot. She immediately starts fussing. Todd picks her up. She continues to cry. She's clearly miserable and upset. This goes on for another 5 minutes, then the nurse gives her some clear Pedialyte. She drinks about an ounce of it. She's too upset to eat and she just continues to cry inconsolably. I get to hold her. She just continues to cry. She's upset and nothing is making her happu.

Todd takes her back and tries again to comfort her. Then she BARFS all over Todd's work uniform. (He was supposed to go straight to work right after the MRI....not anymore). Then we're all frantically trying to help her and clean up her vomit which is mostly pedialyte. We are barely able to calm her down when the nurse drops the bomb.

"We weren't able to take all the pictures we wanted to because of all the metal in her chest"... Astonished, we're both thinking outloud: WHAT?! She repeats: "the pictures we took were very shadowy and we couldn't even complete the scan". She goes on to say that the magnets were just refracting off the coils and the staples/clips in her heart so all the pictures they took were coming out black. She said they couldn't even see her heart because of all the shadows.

Which means all that crying, sore throat pain, barfing, intubation, poking for an IV and starving my baby since 3:15 this morning was for NOTHING! I will post more when I get home but this was definitely NOT the news we were expecting today. : (

MRI Today

2010-08-17T08:36:00.001-07:00

The hospital called me on Sunday to go over her admitting instructions for Scarlett's MRI today. I didn't know that they had their own parking lot and their own admitting desk. The lady who caled me told me Scarlett couldn't hve anything to eat after 4:30am. But she could have clear liquids until 8:30am.

She said that she could wear her normal clothes during the procedure as long as it doesn't have metal (snaps in onesies), because metal would interfere with the scan. She said that they will put a anesthesia mask over her mouth/nose, she'll take 10-15 breaths then fall asleep. For some reason when she said this I started to cry softly to myself. Probably because I'm remembering the same senario from her last CAT scan and heart cath. Then the lady said that they will probably insert a breathing tube down her throat because they will have to take some "still shots".

She said that Scarlett will probably have a sore throat when they take the tube out. I had tears rolling down my cheeks. I feel so sorry for my baby. Its not fair. I don't know why it upset me so much to know that she'll be intubated, but it did. So with a lump in my throat I wrote down everything she said. And I answered all her questions. No, she doesn't have a pacemaker. No, she's not allergic to anything. Yes, she has metal in her body (wires holding her sternum closed). No, she doesn't have diabetes or high blood pressure. Yes, she's had surgery before. No, she's never had an adverse side effect from the anesthesia. And on and on and on.

You would think after 2 open heart surgeries, 2 cardiac catheterizations, and 2 CAT scans, this would be easy for me. But it's not. I'm still scared. I'm still worried. I'm still sad. I couldn't sleep last night. I woke up to feed Scarlett at 3:10 this morning and I couldn't fall back asleep until almost 5:00am. But I'm not even tired believevit or not.

Grandma spent the night last night so she can watch Violet today while we're at the hospital with Scarlett. So last night Scarlett was singing "Itsy Bitsy Spider" with mommy and grandma. Well, she doesn't sing of course, but she does the hand gestures during the song and she claps when its over. Then she immediaty starts the spider hand gesture again to signal to us to sing it again. It was precious.

Well, one more hour to go before we head out for the hospital. I'll post more when I'm there.

New MRI Date (sort of)

2010-08-15T20:05:00.000-07:00

I was driving home from work yesterday when I got a call from St. Joseph’s Hospital. They were calling to confirm Scarlett’s MRI for Tuesday, August 17th at 11:30am. I immediately said “You mean Monday, the 16th at 11:00am, right?”, and the lady on the other end said “No, it’s Tuesday the 17th at 11:30am, check-in is at 10:30.

I was perplexed because I was sitting at my computer when the nurse called me to schedule it. I put it on my calendar, I wrote it on my leave slip for work, I even posted it on my blog. August 16. Don’t know why I was so certain it was that day…

Because this morning I looked at a notebook where I write everything down work/personal related and it says “August 17, 11:30am check in @ admitting”. Clear as the nose on my face. I guess I have a lot on my mind, because I pushed it up by 24 whole hours. What a ding dong I am!

Well, my precious little Scarlett is doing very well. She was teething last week and was waking up intermittently with terrible screams of pain. But she’s calm down when I took her out of her crib and her run around the living room. Then she’d scream again when I tried to put her to bed again. But yesterday evening, she was giggling and smiling and I saw a tooth breaking through on the bottom. She has almost all of her teeth now, but is still missing 2 on the bottom and 2 on the top.

Oh, and her new favorite thing to do is climb up her Little Tykes slide and slide down all by herself. It is adorable. Sometimes she even says “weee!” when she’s going down the slide. Mommy taught her how to use the slide, and now she’s an old pro. I’ll try to post some pictures later.

Emotional Wreck

2010-08-09T19:33:00.000-07:00

Today one of my heartmom friends posted on Facebook that she was nervous about taking her baby to the cardiologist office. She was apprehensive about something being potentially wrong with her daughter, who also has Tetralogy of Fallot (just like Scarlett). Fortunately for her, the cardiologist (Scarlett's cardiologist, Dr. Pophal) said that her baby looked and sounded great and that she doesn't have to go back until November.

Her post brought tears to my eyes. I was so happy to hear that her daughter is doing so well. Truly I was. But I can't help but think that I was also emotional that I wish Scarlett's cardiologist appointment back in May had the same outcome. I wished that Dr. Pophal was able to give me the same news about Scarlett. Instead, I was told she has a leaky valve. Not only that... but that it was leaking "a good amount". Ever since that day, I've been an emotional wreck. Crying at the drop of a hat. Living in fear that her heart is working overtime. Worried about every abnormal behavior. Praying for more time. Holding my breath during echos that the leak hasn't gotten worse.

All it takes is some unsuspecting person to say "How is the baby doing?" and I break into tears. But not always. Usually I'm okay. Usually, I can talk about Scarlett's heart condition with a poker face. I can fake it pretty well. I can pretend that I don't live with the thought that each day with my youngest daughter could be her last.

I read stories about heart parents who lose their children unexpectedly do to complications from their child's heart defect. Here one day, and gone the next day. It is every parent's greatest fear to lose their child, but for normal parents it is an unjustified fear. The risk of something happening to their healthy child is about 1%. But for a heart parent, especially for the parents of the babies with complex congenital heart disease who's children are never truly "fixed", that fear is more prevalent, justified and REAL.

I'm one of those parents. I was reminded again in May that Scarlett will *always* have something wrong with her heart. Scarlett will always be waiting for the next surgery. Waiting... not knowing... wondering.... how long will this one last me?...when will the next one be? How much time do I have?.... It makes me very, very sad when I think about it. Sometimes life isn't fair.

Geez, I didn't mean for this post to be such a downer, but I guess I'm just praying to God that next week's MRI tells us that she has at least another year before her next surgery. Hasn't she been through enough in this last year? Can't we just let her rest and be a "normal" happy kid for a little bit?

Sweating -- Imagining The Worst

2010-08-04T14:24:00.001-07:00

There are certain things that “normal” babies do that cause little, mild or no concern in parents. Such as: sleeping too much, not eating enough, acting tired, acting irritable, fever, vomiting/spitting up, restless nights, or sweating. But to a heart parent, any one of these symptoms could be a sign of heart failure…

Heart babies are different. Much different. Worrying is second nature to any mother. However, when your child’s seemingly minor cold/flu/infection could mean the difference between life and death… you take every fever, every decrease in appetite, every vomiting and every lethargic episode as serious. There is no such thing as “we’ll just wait it out and see if it clears up on its own”. Why? Because, 24 hours could mean the difference between mild vomiting caused by tummy upset and heart failure.

And this is for a “normal” heartbaby. Now, add another stress factor to the mix…. LEAKY HEART VALVE AND PRESSURE ON THE RIGHT VENTRICLE. Do you think any parent would take vomiting, racing heart, decreased appetite, or sweating mildly???

So, the other day Scarlett was sweating. Indoors. Under the fan. With the air conditioning on. Todd was home, Violet was home, heck, even my mom was there visiting. Yet, three other people were comfortable with the room temperature… and none of them were sweating. Only my little heartbaby was. My little moderately-leaky-valve-and-mild-pressure-on-the-RV precious little Scarlett. Why was she sweating and no one else was?

Immediately, your mind imagines the worst. Oh my god, she’s in heart failure. Because sweating, along with labored breathing, vomiting and racing heartbeat are all signs of cardiac distress. So we page Beth (Scarlett’s cardiologist)…. Even tho she’s on maternity leave and technically not supposed to be answering pages, she calls back right away.

She said that sweating is actually normal for heart kids. Not quite sure why, but it is normal/expected. As long as she’s not vomiting, breathing hard, or excessively tired, then she’s probably just fine, and the house is a little warm for her. WHEW! What a relief. But how were we supposed to know? It’s like we’re constantly on-edge and worried that at any moment she could go into heart failure. But since Scarlett was happy, playing, climbing, laughing, and acting like herself… then the sweating was probably because she was just warm.

So, at last week’s cardiologist appointment she weighed 18 pounds! Yee Haw! She finally reached the 18 pound mark. Only two more pounds and she can go in a forward facing carseat and see something other than the backseat. We are still fortifying her milk with formula, calorie enhancers, and thickening it with oatmeal.She’s not a very good eater anymore. She likes to pick at her food, but leaves most of it on her high chair tray. But somehow someway, we’ll fatten her up. Her MRI is still scheduled for August 16, we’ll have more answers about when the next surgical intervention might take place. Until then, we just watch her closely and pray that the homograft lasts her at least another year.

MRI Is Scheduled

2010-07-28T14:23:00.000-07:00

Had a quick moment to post some pics.

Scarlett has a cardiologist appointment this Thursday, but the MRI is scheduled for August 16. Have to run, but will post more later.

Not Out Of The Woods

2010-07-03T09:34:00.001-07:00

Well, the echocardiogram results came back normal and she was released on Wednesday afternoon. But that doesn't mean she's out of the woods yet.

Beth (Sacrlett's other cardiologist) said the echo looked good but that the leak was still there. Because the leak is still there, the pressure on her right ventrivle (RV) is still there. Mind you, the overall heart function is better and the tightness in her left pulmonary artery (LPA) is not as bad, but it is not completely gone.

So the question now is HOW MUCH PRESSURE? And HOW MUCH LEAKING? In order to quantify "how much" and "how fast"? Beth wants to see her back on Tuesday for a follow-up appointment. They'll check her weight, listen to her heart and just assess her. Then in a month, they want to do an MRI to determine exactly how much blood is regurgitating back to the RV.

An MRI will give Dr. Cleveland the answers he needs to determine how much Scarlett's heart will be able to handle. But since the leak and the pressure are still there, then it is inevitable that her next open heart surgery to replace the homograft will be soner than the 2-4 years an originally estimated. : ( The MRI will give us a lot of answers.

Echocardiogram

2010-06-30T09:11:00.000-07:00

Day 2 at St. Joseph's Hospital. Scarlett had a pretty restful night. She woke up a few times crying, but settled back down within minutes. Much better than I expected. This morning she woke up in such good spirits. She is such a tough little girl. She was standing up, playing with toys and wanting to he held by mommy and daddy (which we were obviously happy to oblige).

They removed her IV last night/this morning around 2:30am. Her chest x-ray at 5am came back normal, so we're just waiting on the echo results (which is being done at this very moment). If the echo yields good results, then we'll be able to go home today! yay!

She hasn't thrown up at all from the anesthesia, and as a matter of fact she had a ravenous appetite when she got up to her room. She drank 8 ounces of Pedialyte! (she usually only drinks 3-5 ounces at a time). Then last night she drank her milk bottles like a champ and seemed much hungrier than usual. Probably because she had nothing to eat or drink from 2:30am Tuesday morning until 3:30pm Tuesday afternoon.

After her echo, we're gonna let her have a little breakfast. I ordered her some scrambled eggs and toast. The nurse just brought in a high chair for her. We're just waiting for the ultrasound tech to finish up the echo. And believe it or not, she's not screaming right now (shocking!). She usually *hates* echo's. and fusses and fusses and cries through the entire thing. But right now, she's being a little saint. Good girl Scarlett! Ooooo, the echo guy just finished... anxious to know the results.

Well, I don't have internet access at home, but I will try my best to figure out a way to update the blog, maybe via my cellphone or perhaps going to a friends house to use their internet. :)

Successful Heart Cath

2010-06-29T19:53:00.000-07:00

Little Scarlett is resting peacefully after a very busy day! We had to check into the hospital at 9:00am this morning for her 11:00am heart cath. I packed our bags last night and finished packing this morning. We actually got a late start but ended up being perfectly on-time. We did the usual...registration, walk up to Peds pre-op, hang out there, get weighed and measured, fill out more paperwork, sign consent forms, change into her tiger hospital gown, get blood drawn, etc. Then it was off to the cath lab.

Daddy got to push Scarlett in this toy car that the hospital has (this pic was taken before she changed into her tiger gown).

We got to meet with Dr. Pophal (like I mentioned in my last post) right before handing her off to the nurse, and he let us know what he was going to do in the cath lab. Balloon angioplasty of her left pulmonary artery (LPA) and stent it if he had to (which he didn't want to). He had mentioned that her homograft was leaking moderately (as opposed to mild or severe). He said that he was hoping that the leaking was because of a narrowed LPA, and that if it wasn't then we might have to consider that it's just time for a new homograft [which is a major 7-10 hour open-heart surgery]. We were hoping and praying for good results, needless to say.

We handed Scarlett off to the nurse around 11:20am. She started screaming her head off when I handed her to the cath nurse. It broke my heart. The nurse said that one of us could go in there with her while they administer anesthesia and she falls asleep. I volunteered Todd. and I'm glad I did. He came back very teary eyed because he said Scarlett went out fighting, but that she was out within a minute of struggling.

Then we headed up to the 7th floor PCTICU, to wait the 3 to 4 hours during her heart cath. Scarlett's auntie Dawn came to wait with us, and uncle Marc also came for a while too. Finally around 3:15pm we got the call that they were done and they were bringing her up to her room [where we were waiting]. We had to leave her room so they could get her settled in when she arrived. We went to the waiting room for about 10-15 minutes.

Finally we were able to see Scarlett. She was groggy and resting, because the nurse said she had woken up and became upset, so they gave her something to calm her down. So, when we walked in she was quasi-sedated. But that didn't last very long. because she woke up (again) and oh my golly! what a harrowing experience it was. She was super duper upset! Turning over, crying, fussing, kicking etc..

I kept asking: is she in pain?, is she hungry?, is she scared?, she was just so increibly upset and irritated.

Mind you, she's not supposed to move her leg for 6 hours [heart cath means they inserted a catheter into the artery in her groin/leg area], but she was kicking/screaming/crying/writhing and throwing a fit for the better part of 45 minutes. She would relax and settle down, but that would only last a minute or two before the crying and fussiness started again. They upped her pain meds, that didn't work... then they gave her some Morphine, and that helped for 10 minutes but after that she was right back to being very, very upset. Finally a new nurse came in and gave her some more Morphine and she calmed down and has been sleeping ever since.

So now onto Dr. Pophal's cath report....

Dr. P said that he was able to balloon angioplasty Scarlett's LPA, and that should help with regurgitating bloodflow. Because remember, her right ventricle (RV) pumps blood up the homograft, to the pulmonary arteries to the lungs. But because her LPA is so narrow, the blood can't pass so it regurgitates it back down the homograft (called "leaking"), and over time this leads to right-sided heart failure because her RV is working overtime to try to pump twice the amount of blood through the homograft.

Now that her LPA is widened [post-cath], he is going to give her RV a chance to release some of the pressure that is building up from working overtime these past few months. HOW MUCH TIME? we don't know. He is going to discuss Scarlett's case with Dr. Cleveland (the surgeon). Depending on what Dr. Cleveland says, well.... we might have to replace the homograft sooner than the 2-4 years that I originally thought in October.

Meaning:
1.) Blood is supposed to flow in a forward direction in your heart (with no backward "leakage")
2.) Because Scarlett's LPA is narrow, blood was regurgitating ["leaking"] back to her RV
3.) The leaking in her homograft is moderate or moderate-to-severe. This is bad.
4.) The leaking [backward bloodflow/regurgitation] is causing her RV to work overtime to pump it back to where it belongs
5.) Because her RV is working harder than it has to, it's causing pressure in her RV.
6.) The pressure in her RV is mild-to-moderate.

After today's heart catheterization, I am hoping and praying that the ballooned LPA will allow blood to flow through the homograft (one-way) and lessen the pressure in her RV. Because, if the pressure in her RV maintains or gets worse, she will need a new homograft [which I mentioned earlier is a 7 to 10 hour open-heart surgery!]. Unfortunately, I don't know how much time Dr. Cleveland is going to want to give Scarlett to allow her RV pressure to come down. 2 months? 4 months? 6 months?

The good news is that we did buy her some more time. Because if Dr. Pophal wasn't able to balloon angioplasty, then it would have meant immediate homograft replacement. So, at the very least, we have bought her some more time [how much time, I don't know yet]. Oh, and I almost forgot...most importantly, she is not on any supplemental oxygen after this heart cath! Woo Hoo! :)

Thanks for everyone's thoughts, well wishes and prayers today. I will post more when I know more.

Heart Cath

2010-06-29T13:13:00.000-07:00

As I'm writing this Scarlett is in the 'cath lab'. Just as I expected, it was extremely difficult to hand her over to the nurse. She started bawling immediately, so Todd had to go into the cath room with her to hold her while they 'put her under'. Talk about a grown-man crying...

I meant to blog several times since my last post, but I don't have internet access at home anymore, so it's been tough. Since my last post, I had a quasi-nervous breakdown because of Scarlett's leaky valve. The second I heard Dr. Pophal utter the words I was immediately panic stricken. WHAT? NO!, Not yet!

I know that the words "leaky heart valve" means that she's that much closer to her next open heart surgery...and at the time (May 13) it had only been 7 months since her last major open heart surgery. I was anticipating that her homograft would last her at least 2 to 4 years as they had originally hoped.

But, Dr. Pophal was pretty calm about it when he told me. He said that she wasn't in immediate danger, and that if the leak got the same or worse at her next echocardiogram (a month later), he would just schedule her for the cath lab where he could balloon open her pulmonary arteries.

So, I was prepared at her next cardiologist visit that it was a very real possibility that she could be going in for a cardiac catheterization this summer. As expected, at the next visit (June 10), Dr. Pophal said that the leak was the same. so they scheduled her cath for today June 29.

Dr. P said that he planned to go in and stretch her pulmonary arteries so that the blood that is going in there and regurgitating back to her right ventricle will stop regurgitating. But this morning, he said that IF he's not able to stretch (balloon) her arteries, or IF that isn't the reason why the regurgitating is happening [which is a possibility], then it means that it's possibly time to replace the homograft. Which is a fear of mine. I hope and pray that this isn't the case, but I will blog more after she comes out of the cath lab.

Leaky Valve : (

2010-05-19T21:35:00.000-07:00

Well, the cardiologist appointment last week had good news and bad news. But for me, it was more like bad news and more bad news. The “good” news is that she gained weight. She now weighs 17 pounds 2 ounces. According to the cardiologist office, she gained 1 lb 3oz since her last visit. She is still in the zero percentile for growth, so I was still disappointed. The cardiologist said she was pleased with her weight gain, because at least she is gaining.

She tried to make me feel better by saying Scarlett went from the negative 5th percentile to the negative 3rd percentile. I just wish she was on the growth chart again. I was not happy about her weight gain, because when I took her for her 1 year check up, she weighed 17 pounds. So, to me she only gained 2 ounces in 2 months. But maybe I’m mistaken. : (

The other bad news is that her echocardiogram showed she has a leaky valve. The homograft, (pulmonary valve from a cadaver that they implanted in October) is showing some regurgitation backward into the right ventricle. Thereby making her right ventricle work overtime to try to pump that blood back up the homograft.

Because this excess (leaky) blood makes the right ventricle work harder than normal, over time it adds extra pressure on the right ventricle, reducing its ability to pump blood (a condition called right-sided heart failure). Mind you, this is over time. But what we don't now is HOW MUCH TIME. Are we talking weeks? or are we talking months? I was thinking since her surgery was in October, that I had at least 2-4 years before I heard the words 'leaky valve'. So, yes, I was a little surprised to hear those words this soon after surgery, it's only been 6 months.

I know leaky valves are normal and expected for someone with her heart condition, but it really threw me for a loop. : ( I'm not ready to send her back to the hospital yet. Dr. Pophal said that he may be able to treat the leaky valve with medicine...but in the end, he did an EKG (in addition to the echocardiogram), and they want to see her back in another month for another echo.
I tried to act calm and cool about it when they told me. I asked if this was a new finding, or if it was leaky at her last echo. Unfortunately, they couldn’t find her last echocardiogram to compare it to, so I was secretly FREAKING OUT inside.

I'm not gonna lie. I'm very worried about it. I know I probably shouldn't be, but when you live with a child that skirts the fine line between life and death, it is very hard not to be worried. The fact that I'm a complete worry wart doesn't help the situation either. Today Scarlett wouldn't eat and she was unordinarily sleepy. I immediately got worried that it's her heart. It could be nothing, but now that I know she has a leaky valve, it's on my mind that any unusual behavior can be heart related.

I will feel better after our next cardiologist appointment. For now, Scarlett is still doing well. She's acting "normal", and she seems happy. Her appetite has decreased, but maybe it's just because she's teething. I still need to buy a new digital camera, and when I do, I'll post more current pics. Thanks for reading.

Growing Up

2010-05-12T02:26:00.000-07:00

I can hardly believe that my little baby is already going to be 15 months old. She is doing so awesome. She's practically running now. She is drinking from a sippy cup, wearing size 9-months clothes, eating big people food, dancing when she hears music, and trying desperately to talk.

It's been almost two months since her last cardiologist visit. She is going for a routine echocardiogram and clinic appointment tomorrow. This will be our first 'official' visit with Dr. Pophal. Beth will be there too, but it will probably be the last time she sees Beth, because she has officially transitioned from the "high risk" category to "normal" category, and only needs to be monitored every 2 months. Maybe at tomorrow's visit they'll say that she can go longer in between visits?? Like 3 or 4 months? She seems to be doing so fantastic. Such a blessing.

I broke my camera somehow on Easter Sunday. These are some of the last pictures I took. As soon as funds are available, I'll buy a new one, so that I can start snapping and posting new pics of my little princess.

Other exciting news to date: We moved!! If you've been reading my posts since July of last year, you'll know that I was house hunting for 8 months. I finally found our dream home in Glendale, AZ very close to Cardinal Stadium also known as Westgate. We moved in April 5th and I love it! The neighborhood is pristine and beautiful. Very family friendly. Beautifully landscaped and maintained front yards, nearby parks, and best of all, Scarlett's aunt and cousins are within walking distance (6 houses down the sidewalk!). I will post more pictures later this week, and definitely more when I get a new camera.

Look Who's Walking!

2010-03-09T19:33:00.000-08:00

Well, I'd have to say it's official. Scarlett is walking! The babysitter said that all day today, she's been walking from the couch to the playhouse, from the chair to the table, and all over the house in little 6-7 step spurts. She immediately falls to her little bum after 6-7 steps, but she gets right back up and trys again. She's doing great walking along the walls, couches, tables. My little trooper. I can't believe after all she's been through, she can still pull herself up and let go and walk.

She's such a big girl. She now has 5 teeth on the top and 4 teeth on the bottom. I'm introducing new foods everyday. Last week, she tried spaghetti for the first time.

Scarlett is a "big girl" now. She's eating big girl food. Her first time eating spaghetti, she mostly played with her food, but I think she got one or two bites in after all was said and done. She eats taquitos, crackers, yogurt, grilled cheese, chicken nuggets, french fries, green beans, peas, Cheez-Its, Nutragrain bars, and of course mommy's potatoes. I gave her apple for the first time last week too. She's still underweight, and needs extra calories, but she's a GREAT eater (unlike her sister). My little Scarlett will try anything. Soft, crunchy, wet, dry,...finger foods... or being spoon fed... she loves to eat. : ) Such a blessing. Now if only I could get her to gain some weight!

Beth (Scarlett's cardiologist) sent us some BeneCalorie and Kids Essentials. I need to introduce these supplements to her diet. I guess we'll see how it works. So far, she's taking pretty nicely to the whole milk (from breastmill). It's been about 2 weeks already. She has a pediatrician appointment next week for her 1-year check-up and monthly synagist shot. I'm keeping my fingers crossed that she gains some weight. I'll keep you posted!

Mommy's Paranoid and No More Pumping!

2010-03-02T19:44:00.000-08:00

Today I took Scarlett to the cardiologist for her routine follow-up appointment. I also took Violet for an echocardiogram. Yes, you read right, Violet. Ever since Dr. Alboliras told me that my baby (Scarlett) would be born with a complex congenital heart defect, I've been paranoid that Violet (my 3 year old) might have an undiagnosed CHD too. So for the past year, it's always worried me.

At Violet's 3 year check up last month, I told the pediatrician to listen extra carefully to her heart for any murmurs. Which got us talking about why, which lead to the pediatrician referring Violet for an echo based on family history. On the car ride to the clinic today I taught Violet a new word "paranoid". I told her mommy's paranoid. Because the truth is, mommy IS paranoid that something might be wrong with her heart, and I'd rather be safe than sorry.

I already had an appointment scheduled for Scarlett today (can you believe it's been 8 weeks since her last appointment?), to check her heart [and weight], but since I was going to be there anyway, I had them schedule an echocardiogram on Violet too. So while daddy and Scarlett were in one exam room, mommy and Violet were in another getting the echo (ultrasound of her heart) done.

And I'm happy to say that it came back 100% normal. Yay! :) Violet's heart is great.

Scarlett's cardiologist said that her heart looks great too! We don't have to go back for another 2 months! Which is so great because last year we were at the cardiologist's office every 2 weeks, so to be able to wait 2 months is fantastic.

As for Scarlett's weight, she's still small for her age. She weighs 16 pounds, but she's still holding steady on her own growth curve which is slightly under the 0 (zero) percentile. So although she's not on a "normal" growth curve, she is still growing which is a good sign. I have to continue to add butter to her diet and add carbohydrate powder to her milk, but she's doing great.

Speaking of milk.... I'm happy to announce that I have officially STOPPED PUMPING! Yee Haw! Any mother can breastfeed (no biggie), but it takes an extra dedicated (a.k.a. ~crazy~) mom to exclusively pump for 365 days. (or 372 days in my case). Yes, because of Scarlett's heart condition, she was unable to nurse. She was on a feeding tube for the first 6-8 weeks of her life, I also had to fortify my milk to increase her calorie intake, and in addition to all of that, she aspirated her food and I have to thicken it with a thickening packet. So to this day, Scarlett has never actually 'breastfed' (nursed).

But since it was so important to me to feed Scarlett breastmilk, I'd been pumping, pumping, pumping since day one. Never being able to feel the bond that accompanied nursing her. Instead, I had a special relationship with my breastpump. It's no wonder... since I pumped day and night round the clock... At work, at home, in the car, at my mom's house, my sister's house, my aunt's house, my cousin's house, my friend's house, at baby showers, at bridal showers, in parking lots, in bathrooms, in offices, at the hospital, on the toilet, on the bed, on the couch, on the floor, on the chair, in a moving vehicle (while someone else was driving of course!), in the front seat, in the back seat, in a parking garage, ...yes, I was a regular "Dr. Seuss" (Green Eggs and Ham reference). I even pumped and dumped when I ate spicy foods or during the 2 times that I consumed an alcoholic beverage in the last year.

At any point in time for the last year you could ask me "What are you doing", and I'd answer "Pumping"... or sometimes I'd just say "What do you think I'm doing?"... Or I'd be talking on the phone while pumping and friends would say "What's that noise", and I'd say "I'm pumping"....or people at work would ask "Where are you going".. and I'd pat my breastpump bag and say "Where do you think I'm going?". Even my Violet knew what mommy was doing. I'd ask her "What's mommy doing?" and she'd say "You're pumping your boobies!".. and I'd say that's right..I'm making milk for Scarlett!!

You may ask..'Aren't you going to miss it?', and I will quickly answer "NO!". Oh, and a note to all my breastfeeding/pumping mom friends out there... Don't Stop Cold Turkey!! Evidentially, you're supposed to stop g r a d u a l l y. Uh... duh... why didn't I think of that? In fact, my body is still sending messages to my boobs to make more milk. Apparently they still haven't gotten the hint that I stopped pumping a week and a half ago! Hello boobs, this is your brains talking... you can stop now.. thanks.

So, my little Scarlett is officially on whole milk, and mommy is officially done pumping (or pumping and dumping)! Yay! Plus, her heart looks and sounds great, Violet's heart is great and there is lots to celebrate.

Cardiologist Appt Today

2010-03-02T01:13:00.000-08:00

Today I take Scarlett to the cardiologist's office for a routine follow-up appointment. Can you believe it's been 8 weeks since her last appointment? I can't. Last year I was in the office every 2-3 weeks...pretty much the entire year. When Beth (Scarlett's cardiologist) told me in January that she'd see me in 8 weeks I was in disbelief. Wow... I can really go two months in between appointments? That's awesome.

That means that Scarlett is doing great (heart-wise) and only needs to be monitored 6 times a year. That's great. Scarlett is still trying her best to walk unassisted. She took about 6 steps on her own on her birthday, but she's still slow to take off. That's okay, I like watching her crawl around anyway. It reminds me she's still a baby.

**NEWS FLASH** Exciting news for heart parents!!! St. Joseph's Hospital is working toward opening the first pediatric heart transplant program in Phoenix, Arizona. Up until now when a local baby/child was in congestive heart failure (requiring a transplant), they had to literally move out of state and go to Boston or Los Angeles for several months while their child awaited a heart transplant. But I just read tonight that this program will soon be available in Phoenix!! To be performed by Scarlett's team of pediatric cardiac surgeons. This is awesome. Of course I pray that this will never be an issue for my baby, but I am relieved that if it did ever come to that, we won't be further burdened with moving out-of-state. Here is an article about it:

http://www.stjosephs-phx.org/Medical_Services/Congenital_Heart_Center/203531

I will post how her cardiologist visit went tomorrow. I'm hoping for more weight gain! Let's keep our fingers crossed.

Ethan's Run Today

2010-02-20T13:23:00.000-08:00

This morning Violet, Scarlett and I woke up and drove 40 miles to east Mesa to attend "Ethan's Run Hope For Heart Defects". There was quite a good turn out. I was happy to see so many people there braving the brisk weather to support my friend Heidi and the cause in general.

I was suprised that Heidi actually ran in the 10K! (amazing woman...). Many of the heartmoms walked the 1-mile "fun run". Me and two other heartmoms just walked the 1 mile fun-run.... and truthfully we kinda cheated a little and probably only walked half a mile (shhh! don't tell). It was a lot of fun though. and thank God the weather was agreeable [meaning it didn't rain until the event was almost over!]

ABC 15 [local news channel] interviewed Heidi on Thursday {Ethan's would-be 1st birthday}, and it aired on Friday. Here is a link to the video and the story:

http://www.abc15.com/news/local/story/Mom-creates-Ethan-s-Run-to-help-families-with/mTMOVcX0GUaicWvYRVRgpg.cspx

Here are some pics I took this morning after the race before the weather took a turn for the worse.

It was great to see so many familiar faces and see the heartbabies. Next week we get to do it all over again for the American Heart Association's annual "Heart Walk" which will take place next Saturday at Tempe Town Lake.

Baby's First Birthday

2010-02-17T01:19:00.000-08:00

Today is Scarlett's Birthday. She did it! She survived her first year of life which actually says a lot. Last week was "Congenital Heart Defect Awareness Week". On my facebook page I posted facts about CHD all week. One of the facts that I listed was that each year 40,000 babies are born in the U.S.A. with a CHD. Of those 4,000 will not live to see their first birthday. Scarlett has defied the odds. She is a fighter. She is a survivor.

Two open heart surgeries, 2 cat scans, 1 angiogram, 4 blood transfusions, countless chest xrays, echocardiograms, EKGs, needle pricks (for blood draws and shots), heart medications, feeding tubes, & cardiologist visits, she is alive and doing fantastic. If you saw her, you would never know the harrowing year she's been through. She just looks like a happy, healthy little baby.

I wish it were true. I wish she didn't have to have any more surgeries. I wish she didn't have to suffer anymore, but at the same time.... I am just to thankful and happy that I have her in my life. Sometimes I hear or read on other heartmom blogs "I wouldn't have it any other way"...[meaning that they are pround to be a heartmom, or they're proud of their heartbaby], but I guess I'm a little more selfish.

I wish that Scarlett was healthy. If I had my choice... I would chose for her NOT to have a heart defect. I hate to see my baby suffer. Yes, I am proud to be a heartmom, and yes I am a very strong advocate for heartbabies and CHD Awareness, but if I had the choice...I think I wish that CHDs didn't exist. But God chose me. God chose Scarlett. and there is a reason for everything under heaven.

There are tears in my eyes right now thinking about the first year of Scarlett's life. She's been through so much, and yet she is so calm and happy and perfect. My poor little daughter has endured more in her first year of life than most of us will ever have to suffer in a lifetime. She is so brave. She is my inspiration and my hero. Sometimes I just look at her and I start crying. She is such a tough little girl.

Happy Birthday Baby Scarlett. God Bless you and keep you healthy for many more birthdays to come. I love you baby bear.

CHD Awareness Day, February 14th

2010-02-15T01:46:00.000-08:00

Yesterday was February 14th, Valentine's Day. Also known in the heart world as "CHD Awareness Day: A Day for Hearts". I chose this very special day to celebrate Scarlett's 1st Birthday (3 days early). I had a HUGE party for her and invited half of the city of Phoenix. A ton of people came to celebrate and honor my little heart baby. What a heroic year she's been through. I still get choked up whenever I think about it. (including now).

Recently I had a couple of people comment that I hadn't updated my blog in a while. I told those people that I didn't think anyone was reading it, so I stopped updating it. The only way I know that people are still reading it is if they leave a comment...or if they tell me (in person) that they're reading it. So, I promised these people that I would start updating on a regular basis once again.

Afterall, just because she's had her second surgery [and heart-wise is considered stable for now], doesn't mean that people don't still inquire how she's doing. Speaking of how she's doing... she's doing great! She's eating, she's gaining weight, she's almost walking, she's talking/babbling more, she takes baths in the regular bathtub [instead of the baby bathtub]. Her favorite activity is watching her big sister Violet (who recently celebrated her 3rd birthday). My babysitter said that last week Scarlett said "Violet" twice when she saw Violet. So, now she knows "ma-ma", "da-da" and "bi-let". Absolutely adorable.

I will post pics from the party on my next post. But for now, I just wanted to say "I'm baaaack". So, look forward to more posts from me on a regular basis. : )

Ethan's Run 2010

2010-01-16T12:40:00.000-08:00

It is coming up on one year. On February 17, 2009, my CHD baby Scarlett was born at St. Joseph's Hospital in Phoenix, Arizona. Well, on February 18 (one day later), her little friend Ethan was born at the same hospital. Ethan was also born with a CHD called Hypoplastic Left Heart Syndrome [or HLHS as it's commonly known in the heart world]. Ethan and Scarlett were hospital neighbors. I met Ethan's mom Heidi in the hallways of the hospital when Ethan was recovering from his first open-heart surgery, and Scarlett was recovering from her first open-heart surgery. They were coincidentally in rooms 17 & 18 (their birthdays).

Unlike Scarlett, Ethan wasn't released from the hospital after 3 weeks. In fact, Ethan became a permanent resident of the 7th Floor PCTICU for practically the entire duration of his short life. He was only released to be home with his family for a very brief period before being re-admitted again. After a 6-month long and painful struggle, Ethan earned his angel's wings on August 21, 2009. I don't think I have ever cried so much in my entire life. I'm getting tears in my eyes right now just thinking about it. It was the single-most hardest funeral I have ever attended.

Ethan's headstone:

In his honor, Ethan's mom Heidi has established the first ever "Ethan's Run" A 10K or 2 mile fun run/walk. Proceeds will benefit the Scott and Laura Eller Congenital Heart Center [Scarlett's cardiologist office]. Heidi scheduled the Run for the weekend on what should have been Ethan's First Birthday.

The Run will take place on Saturday, February 20, 2009 in the East Valley in the Community of Las Sendas (northeast Mesa). In addition to the Run/Walk, there will be a fun zone at the park with bounce houses and snacks/treats. Children do not need to be registered.

To register, click here. There are interactive maps to see the 10K route and get directions. Mail-in forms can also be downloaded through http://www.arizonaroadracers.com/Calendar/ethans-run.pdf.

If you live in the Phoenix Metropolitan area and are free on February 20, please consider joining us. Thank you for your support of Congenital Heart Defects and for keeping Ethan's spirit alive.

More Weight Gain

2010-01-14T01:11:00.000-08:00

I took Scarlett to the pediatrician's office today for a Synagist shot. This is a vaccination against RSV, which is a respiratory virus that infants and children can contract that is pretty serious (she'd have to be hospitalized). During the months of October - April, I have to take her to every month for a shot to try to prevent her from getting this virus. All of my heartmom friends have to to the same thing with their CHD babies.

So, this morning I took her for her shot and they weighed her on the pediatrician scale...and low and behold, she had gained another 5 oz in a week!! Last week at the cardiologist office she weighed 15 lbs 3 oz, and yesterday she weighed 15 lbs 8 oz!! Woo Hoo!! I know they're two different scales, but I was happy that she is continuing to put on weight. The butter is helping and the carbohydrate powder is helping! :)

I think she's pretty close to taking her first unassisted steps. She'll let go of the couch, coffee table, or other toy/object that she's holding herself up on, then stand unassisted for about 7 seconds, then think about walking, then fall right on her little bum. My friend came over tonight with her daughter and Scarlett was acting like 'one of the girls'.

Scarlett was like: hey, let me play too guys! Violet was being her bossy self. Violet says: "share!... take turns!!", and yet she doesn't follow her own advice...it's kinda funny, really.

My favorite smile.

Next week the home health care nurse is coming over for a visit/check-up. She's gonna weigh Scarlett again and I'm hoping she continues to gain weight. So far it seems like she's on the right path! Thank you everyone for all your prayers for Scarlett to gain weight....once again they worked!! The power of prayer never ceases to amaze me. and I love being amazed. :)

First Steps!!

2010-01-07T22:03:00.000-08:00

I came home from work today and through the door I could hear excessive giggling. I just stood there listening. I hesitated and stalled to open the door just so I could listen to Violet laughing and laughing and laughing, and every now and then I'd hear a little laugh from Scarlett too. I wondered what could be so funny to tickle her that much.

I opened the door and saw Scarlett standing up pushing a little toy (that assists with walking) and walking all over my living room. Then Violet would do the same thing (but she'd run circles around Scarlett), and giggle and giggle like it was the funniest thing on the planet.

I said "Oh My God! She's walking!", and Aimee (my babysitter) said "Yeah, she's been doing it all day!", and I said "Did Todd see her do this?", and Aimee said "No, I don't think so", so when daddy gets home, what a treat he'll get tomorrow morning!! (he works nights now).

I watched and watched and grabbed my camera and my camcorder to video tape and capture these absolutely precious moments on film. Scarlett looked so adorable. I haven't seen her walk before. She's very good at standing, but she hadn't quite taken one step in front of the other, but tonight I saw her push that little toy like she was pushing a shopping cart. With such ease... like she was an old pro.

Then on top of that my girls were TAKING TURNS!! My heart was filled with so much love. I have never been prouder to be a mother. I will post pics later, but I wanted to proudly annouce that my Scarlett is one step (literally) closer to walking. Way to go baby Scarlett! : )

Great News!

2010-01-06T00:04:00.000-08:00

No pics today, just some fantastic news... Scarlett gained weight! Yeeeee-haw! I was literally jumping up and down with joy when I saw what the scale read: 15 lbs 3 oz. She gained a 1/2 pound in 2 weeks! I am so happy, I was doing a happy dance. The butter helped! the carbohydrate powder worked! the less table food, more milk worked! I know it's only 8 ounces in 14 days, but it's a major improvement from her last visit and she FINALLY crossed the 15 pound mark!!!

Beth (Scarlett's cardiologist) said to keep up the good work and to continue to do whatever we're doing. She was pleased with what she saw and we don't have to go back to the cardiologist for 2 months!!! Well, she wanted to see her back in 2 weeks, but I said "really?", and she said if I can get her weighed (like at her pediatrician, or elsewhere) and keep track of her weight gain, then I won't have to go back to the cardiolgist for 8 weeks (for the first time ever!). This is a HUGE deal. I have taken Scarlett to the Scott & Laura Eller Congenital Heart Center every 2-4 weeks ever since she was born. Sometimes I feel like I spend more time there than I do at work! (not true, obviously).

So, to be able to go 8 weeks between visits is a very big deal, and I'm absolutely elated! :) Way to go baby girl!!

Experimenting With Hair-do's

2010-01-05T00:41:00.000-08:00

This is what I call the "Pebbles Flinstone" look. In general, I don't particularly care for the little tuff of hair sticking straight up in the middle of the head on any baby. As my friend described it, it looks like a little tree on the top of their head. But when you add a bow in the middle, the hairdo is instantly transformed to Pebbles Flinstone. This is the first (and probably last) time I've tried this hairdo on Scarlett.

I should add that it took an act of God to get her to sit still long enough for me to capture these pictures. She is definitely a baby on the go and hates sitting still for anything, let alone pictures!

She is becoming an expert at standing up. She's on her tippy toes in this pic. She's also becoming a little daring at letting go and standing unsupported for up to 5 seconds at a time. I think she'll be walking in no time!

She is also starting to make the most adorable little noises when she babbles to herself. To my knowledge she still only knows one word: momma.

This is her other new hairdo. Unfortunately this was the best picture I had of her two teeny tiny little ponytails. She really does look darling with them, but her hair is so thin it's hard to get the little rubber band thingys to stay in her hair!

She's got two little ponies in this pic too, but you can't really see them...and as you see from her facial expression she was in no mood to be photographed.

She has a cardiologist appt today. I am really hoping and praying that she has gained weight from her previous visit (2 weeks ago). We've been feeding her butter with her Gerber food and I've been adding a carbohydrate powder to her milk for Pete's sake! But, I will try my best not to break down in tears is she is still in the 14lb category. I will post again tonight with the outcome. Wish us luck!

Best Christmas Ever.

2009-12-29T01:24:00.000-08:00

Well, I couldn't have asked for a more perfect Christmas for my girls. Christmas Eve (Dec. 26) we read them "Twas The Night Before Christmas", and we laid out cookies and milk for Santa.

We tucked the girls in bed.... and I took pictures of 'visions of sugarplums dancing in their heads'. : )

Then Santa came!! He left a ton of presents for all 4 of us under the tree (which was previously completely void of presents).

He ate the cookies and drank the milk too!!

Christmas morning (Dec 27), Scarlett was the first to wake up... after daddy of course. I absolutely love this picture below, because when Scarlett woke up, she was sitting up in her crib with one binky in her mouth and 3 (count them, three!) more binky's in her hands. I always keep extra binky's in her crib so at night when she's crying and I can't see, I can just feel around for one and pop it right in. She loves her binkys, but this picture makes her look like a binky junky. ; ) [btw: her pjs say "Baby's First Christmas"]

Then finally, Violet woke up and the present opening began!

Violet asked Santa for only 1 thing this year. A flower. A red flower, "so she could smell it". Santa brought her a beautiful long-stemmed rose (which you can see her holding in this picture and Scarlett is staring at it too).

Then they took turns opening presents.

Scarlett was so adorable opening up presents. She is such a little perfect little doll.

Violet was super excited to open every present each with the same amount of enthusiasm as the previous. After each present Violet unwrapped, she exclaimed "OPEN IT!! Open it!!" to daddy, because she immediately wanted to play with each and every one of her toys. Daddy induldged her, of course (it's Christmas!)

Scarlett was just happy to be with her family.

Behold!! Crayons!!!

Scarlett was a lot more tame at present opening, but then again, Scarlett is a lot more tame at EVERYTHING compared to my little spitfire, Violet.

They got such cool and neat toys from their auntie Susan. Scarlett got this super cool Tinkerbell chair that converts to a sleepingbag and pillow!

And Auntie Susan gave Violet this super cool Tinkerbell table and chairs!! Violet loves it!

A very special shout out goes to auntie Susan. She is such an amazing lady who adores Scarlett. She checks my blog regularly, prays for Scarlett regularly, brings special presents to Violet (who may feel left out at times) regularly, lights candles regularly, posts pictures of Scarlett on a "Scarlett wall" at work regularly, and is a total advocate and champion for my CHD baby. I am so thankful that God brought her in my life via Todd's work. Susan brought us bags (yes, bags) of presents for Violet, Scarlett and ME(!) for Christmas. She is a very generous and thoughtful person. Susan, thank you from the bottom of my heart. You are such a warm, caring, and special person. Thank you so much for making our Christmas extra special this year. Thank you for everything you've done for my family.

Okay, back to the Christmas blog, well, later that day/night Uncle Kevin and Aunt Kerri came over and brought the girls this really cool Art Easel. Todd and Kevin put it together that night.

Here is the finished product:

I couldn't have hoped for a more joyous and perfect Christmas for the girls. They had a blast opening up presents, eating breakfast that daddy made them (chorizo and eggs), playing with their new toys, and then hanging out with family later that day. It was a great day and I feel truly blessed. Thank you God, for all the blessings of the day. : )

Baby's First Christmas...sort of.

2009-12-25T21:36:00.000-08:00

Merry Christmas! Although today is December 25th and technically Christmas, we didn't actually celebrate Christmas today. Todd had to work today and he has to work tomorrow too, therefore we're gonna celebrate (as a family) Christmas on Sunday, the 27th.

So, tomorrow night (the 26th), we're gonna put out cookies for Santa, read "Twas the Night Before Christmas" and do all the pre-Christmas traditional stuff for Violet and Scarlett. Then Sunday morning, we'll open presents like it was Christmas.

Today however, I took Scarlett and Violet to church for Christmas mass at St. Mary's Bascilica. It was such a lovely and beautiful celebration. Violet and Scarlett were able to join several other children in the processional, it was such an honor. They were each handed carnations to give to baby Jesus (in the manger scene they had on display in the church). All the children were dressed in their Christmas best (including S and V), and it was simply darling. I wish I had taken photos! : (

Then we got to sing Christmas carols with the choir and pipe organ (my absolute favorite!). Then the homily included the children again. We got to go up and sit at the alter while father Vincent told the children a story about candy canes, then he handed each child a candy cane. The whole mass was practically magical. A perfect xmas mass, I'm so glad I got to take Scarlett to mass for her first Christmas. We'll probably go again on Sunday after we open up presents.

After mass, we went to visit my uncle Ron where Scarlett tasted her first tamale. She loved it! (she is 1/2 Mexican, you know). I need to make some of my own, because she really seemed to enjoy it.

I took this picture of Scarlett standing on her own tonight. She pulled herself up on Violet's table, and proceeded to steal a wedge of grilled cheese (which she's eating in the top picture) which she nibbled on. I can't believe she'll probably be walking before her 1st birthday. She is doing so well. I am so grateful that I get tears in my eyes whenever I think about everything she's been through and how thankful I am to have her in my life. I will post more pics of our "real" Christmas on Sunday. But for all intents and purposes MERRY CHRISTMAS!

Poor Weight Gain

2009-12-22T20:24:00.000-08:00

I took Scarlett to the cardiologist today because of her poor weight gain. We were just there 2 weeks ago, and Beth said she wanted to see her in 2 weeks to see if she gained any weight. At our last visit, she weighed 14lbs 9oz. I was really hoping she passed the 15lb mark... but no such luck. :(

Today she weighed 14lbs 11oz. A measly 2 ounces is all she gained in 2 weeks. I immediately started crying. I have been trying to get her to gain weight. I've been fortifying my breastmilk with powder formula. I've been 'sneaking in' midnight feedings. I've been trying new foods (bananas, potatoes, rice, etc) on her, and it's not working. She's simply not drinking enough milk. :...(

Beth said that we need to give her less table food and more milk. She gave us some supplemental powder to add to her bottles to try to increase her carbohydrates. I really hope it works. If I go back in 2 weeks and she's only gained 2 ounces, I don't know what I'm going to do. Beth mentioned that if it gets bad enough we might have to consider putting the ng tube back in. :( UGH!

BUT on the positive side, her heart looks and sounds great and she's not sick. Other than her weight gain, she's doing terrific health-wise and developmentally, she's right on track! Tonight she grabbed one of Violet's dolls (Cinderella), and was playing with it.

I hope our efforts at trying to increase her calories and carbs works. If you're reading this, say a little prayer that my skinny little baby gains some weight soon. Thanks!

Baby On The Go

2009-12-21T00:24:00.000-08:00

Scarlett is really enjoying her new found talent of crawling all over the house. Once you put her down, she's off! She likes crawling over to the refrigerator and pulling off the magnets and eating them. I posted pics of that earlier (last month).

I hardly ever put her in her walker, but I did today just for her to get a feel of what it's like to stand on he feet and be mobile. This was a cute pic I got.

I try to cook breakfast every Sunday for the girls. It is almost always eggs and potatoes. Last week, I made potatoes and gave some to Scarlett and she loved them! I didn't take pics last week, so I made up for it today. She is very good at picking up finger foods with her fingers and then putting the food straight in her mouth. She likes Cheerios, Gerber Puffs, Cinnamon Life cereal, Nutragrain bars, banana, spanish rice, and mommy's breakfast potatoes.

She has a cardiologist appointment on Tuesday to check on her weight. I am really hoping and praying she's at the 15 pound mark. I've been trying to fatten her up for 2 weeks, because 2 weeks ago she was still 14lbs 9 oz.

Home update: I've been looking for the last 6 months and it's exhausting. I have 3 or 4 outstanding/pending offers. The latest one is off of 75th Ave & Glendale. I really hope I get this one. It's a bank-owned home right down the street from the elementary school, and I will already know one of my neighbors because she is my best friend's friend who lives 5 houses away from the house I put a bid on. There are 3 other bids on this house, but if I'm the highest bidder, then I get it. I'll find out this week hopefully and I will definitely post pics and updates if I get it. Keeping fingers tightly crossed!

Standing Up!

2009-12-15T19:02:00.000-08:00

I saw Scarlett crawl over to the coffee table, then pull herself up to a standing position and stand there for a little while before she fell on ber little bottom. I was soooo impressed and happy. Up until tonight she's just been pulling herself to her knees, but tonight she entered a whole new phase in her development and I'm very very happy. : )

Regenerative Research

2009-12-14T02:09:00.000-08:00

I wanted to share this awesome story that was on 60 minutes tonight.
http://www.cbsnews.com/video/watch/?id=5975132n

It is about regenerative research and it gives me hope that someday scientists will be able to grow heart valves from stem cells. When Scarlett was born, I banked her cord blood which is rich in stem cells. This story really gives me hope for my daughter. Please support stem cell research.

Scarlett is doing so well. Her separation anxiety is lessening more and more each day. She's becoming more independent and showing an interest in playing with toys. Here is a pic of her playing with her piano.

She's also doing better at eating solid foods. On Saturday I made some breakfast potatoes and I put some on her high chair tray and she went to town and ate all of them! I really hope that she puts on some weight at her next doctor visit. Both the pediatrician and the cardiologist want to see her in two weeks because she only weighs 14 lbs 9 oz... which is pretty much what she weighed in August. Her stay in the ICU really took it's toll on her growth and weight gain. : (

But hopefully she's getting back on track. Beth (Scarlett's cardiologist) changed her formula from Nutramigen to Gentlease. Of course she's still being fed expressed breastmilk, but I have to fortify my milk with formula in an effort to get her to gain weight. [that means I add a few scoops of formula to my milk]. I am determined to breastfeed for 1 year. Only for me, it's not literally breastfeeding, it's pumping and fortifying..and thickening. But Beth also wants to start to wean Scarlett off of the Simply Thick. So for the last few days I've been making my thickened bottles a little thinner. Which thereby will also increase her calorie intake (because the thickener takes away calories). I'm really really hoping she gains some weight for her next appointment. I will probably bust out in tears if she's still at the 14 pound mark. : ( It's been five months already!

2010 Heart Baby Calendar

2009-12-10T04:28:00.000-08:00

It's been a while since I wrote that Scarlett had a photo shoot for a calendar of heart babies from Scarlett's cardiologist office (The Eller Congenital Heart Center at St. Joseph's Hospital). The calendars are supposed to be available next week. If you would like one, please send a check for $12.95 [per calendar] to: Eller Congenital Heart Center 500 W. Thomas Road, Suite 500. Phoenix, AZ 85013. Include your name, email and telephone number with your check.

At this time, all calendar orders must be picked up at the Eller Congenital Heart Center (at the above address). If you live out of town, or if you are otherwise unable to go to the clinic to pick up your calendar... please send a note with your check that says "Melodie Mendivil will pick up". Then send me an email (melodiemendivil@hotmail.com) [with your shipping info] and let me know that I need to mail you your calendar.

Scarlett is featured in the month of June 2010. June was designated as "Tetralogy of Fallot" month. Tetralogy of Fallot is the most common congenital heart defect. The month of June had a beach theme and all the babies had on swimwear (as you can see from Scarlett's picture).

All proceeds from the calendar go to the Eller Congenital Heart Center to help support funding for research for congenital heart defects. Thank you for your support!

Goodbye Pulse-Ox and Oxygen Tank(s)!

2009-12-04T19:39:00.000-08:00

Today while I was out APRIA stopped by my house (while my babysitter was home) and picked up the godforsaken pulse-oximeter machine as well as the huge oxygen tank and the portable oxygen tank (and some "spares" that were in the closet).

I wish I could have been there to take a picture, because it is a happy day in Scarlett's life! She's been off of oxygen for weeks and I haven't used the pulse-ox in just as long, but they've been sitting around my house staring at me and reminding me of everything my poor little baby had to go through.

I remember one of my heartmom friends said that she wish they didn't cost so much so we can BURN the pulse-ox machine when we're done using them... like it should be a rite of passage for all heart babies. I couldn't agree more. I am so happy not to have to "plug her in" at night and call APRIA to order the foot probes and to play guessing games when the O2 levels go up and down from minute to minute or from second to second. What torture that was (for both of us!).

So, I am happy to say that Scarlett is OFFICIALLY oxygen free (meaning, it's not even in the house anymore) Woo Hoo! She is doing fantastic post-surgery.

Playing with her toys, crying at the top of her lungs, giggling when tickled, whining when necessary (well, is it ever really necessary to whine?), crawling all over the house, pulling herself up on her knees, eating solid foods (including finger foods), and believe me, she has mommy and daddy wrapped around her little finger (and she knows it).

We've even been able to take her out in public for the first time in 9 months! She went to lunch at Sweet Tomatoes, she went to church for grandpa's funeral, she's going to a park tomorrow for her cousin's birthday party...it makes me want to cry to think that she's *finally* getting to live life like a normal baby. I never thought this day would come. I couldn't be happier for her.

She still has some major separation anxiety issues, and for the most part only wants to be held by mommy and daddy (meaning my sister, his sister, the babysitter, my mom, etc.. won't do at all when Todd or I am around... she only wants ~us~ to hold her), but that is such a small price to pay for a *healthy* and happy baby. It's hard to tell how much of it is us spoiling her, and how much of it is post-traumatic-stress-disorder related to her hospital stay in the ICU... either way, we hug her a little more, we kiss her a little more, we cuddle a little more and we definitely hold her a lot more than we probably would have if she was a little more independant (as a 'normal' 9-month-old).

Pulse-Ox is gone. Oxygen Tank(s) is gone. This is a momentous day for our family and it is a happy day for Scarlett. : )

Grandpa's Funeral

2009-12-02T23:43:00.000-08:00

Today we say goodbye to Grandpa Fred. I wasn't planning on taking Scarlett and Violet, but I'm told that grandpa would have wanted them there. So we're taking both of them. Grandpa Fred lost his battle with ALS ("Lou Gerhig's Disease") after a 6 year fight.

I really feel like Scarlett and her grandpa were a kindred spirit since they both have medical ailments requiring a lot of the same equipment (feeding tubes, oxygen, ventilator, etc..). I am sad for my husband and his siblings for their loss, and I am sad for my girls. That they will never know him except for in pictures. Today is a sad day.

More Stressful Days

2009-11-30T22:58:00.000-08:00

Scarlett's grandpa (my father-in-law) lost his battle with ALS [aka Lou Gehrig's disease] this past Saturday leaving both of my girls grandpa-less. It's been a hectic and stressful week. Todd spend the last 5 days at his father's deathbed and for all intents and purposes I was a single mother for those days. Watching my cardiac baby and my temperamental 2-year-old 24 hours a day all by myself... and wouldn't you know it BOTH of them were *starving* for attention.

Scarlett would scream her little lungs off if I put her down, so I constantly had to hold her, then Violet was extra super clingy and had several meltdowns during those 5 days. I could feel myself going gray by the minute and can understand why some people drink. I love love love my girls, but it was very difficult being a single mother. I don't know how those women do it. I suppose when you add in the exclusive pumping, and the fact that during those 5 days Scarlett woke up 5-6 times during the night (thereby surviving on sleep consisting of 45 minute spurts).

We (me and the girls) went over to my sister's house for Thanksgiving and spent the night on Wednesday and Thursday night. You would think I'd have help from my sister, but alas... my girls wanted one person and one person only... Mommy. (and daddy of course, but he was unavailable). It was a very trying time.

I am very sad for Todd. He is taking his father's passing very hard. I admit I am overwhelmed with feelings of guilt and depression that I didn't think I'd experience since he wasn't my biological father, but it is sad that he is gone, and that he had to suffer as much as he did. :(

Now that Todd is back home, Scarlett is very happy. She's a crawling expert. She crawls all over the place. She's teething (big time) and likes to bite her pacifier and her frozen chew toys. I can't believe that it's been 7 weeks since her heart surgery. She is doing so much better.

Today I called Apria and waited on hold for forever, that I finally hung up. I needed to call them to come and pick up the oxygen tank and the pulse-ox machine!! (woo hoo) because no longer needs them! Yay!

I took the girls to get their picture taken for Christmas, but at the same time I also wanted to get Scarlett's pics taken showing her most recent scar. I think they came out pretty good.

I wanted her to have professional photographs for her so that when she's older, she can know what she went through and I can remember what I went through watching her. The came out really good.

You can see her 2 bottom teeth in this one

This one is my favorite :)

Picture With The President

2009-11-25T23:09:00.000-08:00

I received a phone call from the Eller Congenital Heart Center yesterday saying that the marketing people from St. Joseph's Hospital wanted them to pick a family to take their picture with the President of St. Joseph's named Laura Hall, and they chose me! I felt really honored, how could I say no?

So this morning, I took Scarlett in her "Sunday Best" to go take a picture with the President. She was photographed with two other patients. One was a woman who had recently had a lung transplant, and the other was a man who had a valve replacement heart surgery. Scarlett was representing the Eller Congenital Heart Center. I am so proud.

The picture(s) will likely be used in hospital pamphlets and definitely in a magazine called "Ranking Arizona"... which chose St. Joseph's Hospital as #1 Hospital... or "Best" hospital. = )

So my 9-month old baby is already:
1.) A model for Snuggin Go
2.) In the 2010 Eller Congenital Heart Center calendar
3.) On the news for the CHIEF Graduation
4.) In a picture with the President of St. Joseph's Hospital

Oh, and of course has quite a following on her blog ; ) She's really making a name for herself! :)

Grandpa

2009-11-24T21:17:00.000-08:00

Tonight I took Violet and Scarlett to see their paternal grandpa. He is not doing so well. In fact, he is very very sick, and his doctors/caregivers do not think he will survive much longer. Todd took them (V&S)yesterday to visit him, but I was at work and I didn't get to see him, so tonight I took the girls to see him.

Todd put Scarlett in grandpa's arms (maybe for the last time) and I'm sure that grandpa could feel her and I hope that he was happy holding her [he is very weak and unresponsive]. My heart was breaking. My dad died when I was young, so my father-in-law is the only grandpa my girls ever knew and will ever know. It makes me very sad for my girls that they will grow up without their grandpa. Especially Scarlett. She'll never know how much he loved her. She'll never know what a sacrifice he made to be there for her during her surgery last month. She'll never know him. She'll only know stories I tell her.

I can tell her that I was so touched that he came down to St. Joseph's Hospital to show his love and support for her during her surgery last month. I can tell her what it meant to me and what a sacrifice it was for him to be there for her. It showed how much he loves his son and granddaughter.

Scarlett will always know that her grandpa loves her. I know that we will all be reunited someday, but for now, I am sad that he is suffering and he is fading. : (

Appearances Can Be Deceiving

2009-11-23T04:15:00.000-08:00

People always tell me: “You can’t even tell she’s had surgery”… or “She looks so great, you can’t even tell”…. Or “She looks just like a ‘normal’ baby”. I get comments like this all the time.

I have pictures of Scarlett posted all over my cube at work, so basically anyone who passes by my desk can see her. Also, by now, everyone at my work (300+ employees) knows about Scarlett’s heart condition because I mentioned it in an open forum during 'employee recognition'…(well, I had someone read what I wrote the day of Scarlett’s surgery). So, it often happens that people stop by my cube look at her picture(s) and say: “She looks great/normal/healthy, etc.”

I never really know how to take this. How should a CHD baby look? Obviously CHD babies on oxygen or feeding tubes physically look different, but what are these people expecting? Blue babies? Pale, sickly looking babies? It makes me wonder…Would I say something like that to a heartmom if I wasn’t a heartmom myself?? Then I think, yeah, I probably would. I don’t take offense, but I don’t know what to say… so I just say “yeah, she’s doing amazing, I’m really lucky”.

I always make sure to say “I’m one of the lucky ones”, because I think of the moms of babies who are no longer with us [all the Heart Friends labeled “Angel” on the right side of my blog]. But despite Scarlett ~looking~ fantastic…she’s been through hell and back, and all I can say is looks can be deceiving.

Along those aspects, let’s talk about the façade that I put up on a daily basis. Everyday, I get up, I get dressed, I go to work, I seemingly function and get my job done, I come home, take care of my babies, I pump, I Facebook, I blog, I email… just like a “normal” mother. But looks can be deceiving. . . I am not okay. I am not strong. I am an emotional wreck inside.

This past Friday at Scarlett’s 9-month pediatrician appointment, the doctor walked in to the exam room and said “Hi mom!”, and I said “Hi”, and she said “So, miss Scarlet just had her surgery, how is she doing?”, and I said “Great”, and she said “How are u holding up, mom?..how are you balancing work, home, hospital and everything?”….then from out of nowhere, I got a huge lump in my throat and I was choking back tears. I said “I don’t know… I’m sorry, I think I’m gonna cry”…and the doctor said “Oh no!, why?”, and I said (with tears streaming down my cheeks): “Because I honestly don’t know how I do it… it’s very stressful… and it’s HARD”. I may appear to be strong, but I'm a weak, fragile, sensitive little sissy.

I am definitely not as strong as people think I am. I fall to pieces at the drop of a hat (whatever that means). Inside, I am an emotional wreck. Outside, I can keep it together pretty well. I can crack jokes, I can smile, I can cook, clean, work, and schedule all of Scarlett’s appointments. I can refill her prescriptions, pump my breastmilk, make her fortified/thickened bottles, update my blog, attend Eller Heart Family Council meetings…but when it comes to my emotional health, I’m a walking time-bomb. Ready to detonate at simple questions like “How are you holding up?”. For this reason, I’ve made the decision to get myself into some therapy. I don’t need ‘happy pills’ as my sister calls them, but I could probably benefit from talking to a professional about my emotional instability. Or maybe this is all a normal part of being a heartmom? I guess I’ll find out.

For now, I'll just say that when you look at Scarlett, or when you look at me.... appearances can be deceiving.

Circle Of Life

2009-11-22T21:25:00.000-08:00

I had posted back in September that Scarlett's only living grandpa (Todd's dad) was in the ICU for complications from his condition Amyotrophic Lateral Schlerosis [ALS]. At that time, he was able to make a recovery and was discharged home. A few weeks later, he was even able to make it to St. Joseph's Hospital waiting room during Scarlett's surgery (which I also posted about).

I was deeply humbled that Scarlett's grandpa asked to come to the waiting room during Scarlett's surgery especially because he wasn't even able to see her, he just wanted to be there to support his granddaughter and his son. I should mention that it is a major effort for him to be loaded into the car (he is on a ventilator, trache, a fairly large and cumbersome motorized wheelchair), and taken anywhere.

Well, he was doing stable the month of October (as stable as can be expected in the late stages of ALS), but unfortunately he recently took a major turn for the worse. He developed an infection and was hospitalized earlier this month. The doctors were unable to treat his infection. He spent a few weeks in the ICU, and very recently he was discharged on Hospice care. : (

So, while his granddaughter Scarlett is thriving and beating the odds of survival for her medical condition, he is slowly deteriorating and in the final days of his life because of his medical condition. It's the circle of life. Very sad. I lost my own father 21 years ago, so when Todd's father passes, it will mean that Scarlett will grow up without a grandpa. : ( As anyone would imagine, Todd is extremely upset, and has been spending a lot of time at his dad's bedside. If you're reading this please say a prayer for Todd and his siblings who are suffering right now watching their dad fade before their very eyes. : (

Arizona Republic Article

2009-11-22T04:30:00.000-08:00

I was contacted last week by a reporter from the Arizona Republic (the local Phoenix Metropolitan area newspaper). She had written a article about a local 4-year-old girl [Gabriella Vega] who needs a heart transplant. During the reporter's research, she happened upon my blog.

The mother of Gabriella keeps a blog and the reporter was reading it and clicking around. So, through a link of a link of a link came across Scarlett's blog (totally amazing!). The reporter sent me an email asking if she could interview me for an article that she's writing about blogs that moms of ill children keep/write/maintain.

We spoke on the phone on Thursday and asked me questions like: why do I blog, who reads my blogs, do I like to write, when/why did I start my blog, what's wrong with Scarlett, how long have I known about Scarlett's CHD, and other things like that. I was kind of nervous (I know...me, the total HAM, nervous?)..because this article is going to published in the paper and I just felt like I was going to sound like an idiot.

Anyway, she asked me if there were any other heartmoms that I think would be interested in contributing to her article. I forwarded her the names of a few of my fellow Arizona heartmom bloggers. Especially Lily's mom Jenna (who is the reason why I started a blog) and Ethan's mom Heidi (who is the reason I continue to post to my blog).

I will definitely be posting a link to the article once it's published and I'm going to buy the newspaper and frame the article too. For the record... yes, I *love* to write and I also love blogging. :)

Okay, quick Scarlett update: She's crawling, crawling, crawling all over the place. : ) I think she loves that she can kinda chase/follow her big sister Violet around. ....and Violet?... not loving it so much. She's gonna have to get used to the fact that Scarlett can crawl over to her and play with her toys. It was hilarious the other day because Violet was playing with puzzles and here comes Scarlett. so Violet says "no Scarlett! no!", then she says "mommy, help me!", so we moved the puzzles about 5 feet in opposite direction...well within seconds, here comes Scarlett to the new location.. and Violet says "no Scarlett!", so we move the puzzles again... and the same thing happens again. It was kind of like a Scarlett 'keep-away' game. It was fun and cute especially since Scarlett ultimately won. Violet gave up and Scarlett got to play with the puzzles. : )

Pediatrician 9-Mo Check-Up

2009-11-21T00:50:00.000-08:00

Scarlett had her 9-month check up on Friday and she got a clean bill of health. woo hoo! She's small for her age (very small), but other than that, she's doing great! Dr. Gonzalez said that she wants to see her in a month because of her weight, but that's just to make sure that she gains some weight.

I don't know if I mentioned it or not, but Scarlett lost a whole pound in barely one week when she was still on the feeding tube and oxygen about a week after she was released from the hospital, because she was consistently vomiting her feeds. We were able to get the vomiting to stop, but in that week that we were trying to figure out why she was puking, she lost a pound. This was significant because it's more than 10% of her body weight!

Beth (Scarlett's cardiologist) said to increase her calorie intake to 26 calories per ounce. So basically for every 6 ounces of breastmilk I pump, I will put 3 teaspoons of baby formula to help bulk Scarlett up. It is working so far, because she weighed 14lbs 6oz at the ped office yesterday. However, overall she's still 'off-the-charts' for her weight (severely underweight). But like I said,... I'm told that's "normal" considering she's only 5-weeks post surgery. So Dr. Gonzales will check her weight again in a month.

Scarlett loves eating her socks.

She's becoming more and more active and spends time on the floor playing independently with mommy or daddy close-by. She still has significant separation anxiety issues (and now her sister Violet has them too), which makes her *love* being held and hate being put down, but little by little she's getting there.

Her new favorite thing to do is play with the refrigerator magnets

I mention that Violet also has separation anxiety issues, because she sees me holding Scarlett and she says "Pick me up mommy! Pick me up!", then if I don't she has a total meltdown (as only a 2-year old can). It's not unusual for me to have Scarlett in one hand and Violet in the other. I feel really sorry for Violet, because I confess I ignore her a lot of the time because I have to attend to Scarlett's needs first. Poor little Violet. :(

So, needless to say, I love it when Scarlett is occupied with playing independently, because then I can squeeze in a little attention to my neglected 2 year old. Who, by the way is a 'challenging' child to begin with. Some people say Violet is "high spirited", and others would say "she's spoiled", but I just say she's a feisty little firecracker (gee.. I wonder where she gets that from?). My girls definitely have distinctly different personalities. But one thing is certain. They are loved to pieces by their mommy and daddy. : )

(Violet, Todd, Scarlettt)

Putting on Weight

2009-11-19T03:09:00.000-08:00

(Scarlett with her favorite blankie)

Scarlett had a cardiologist appointment on Tuesday and she gained a pound in the last 2 weeks. I was very happy to see she weighed 14lbs 3oz. Mind you, she hasn't gained anything since August (when she weighed 14lbs 4 oz), but her cardiologist said that this is 'normal' for cardiac kids post surgery.

Her oxygen level at the cardiologist was 99%! They said she's doing great. : ) Her appetite is back. No barfing. She is definitely thriving. Playing, crawling, talking, giggling. and her voice is stronger than ever. She's doing absolutely fantastic. The separation anxiety is still there, but it is a lot better now. Getting her to go to bed is a struggle. She cries and screams and fights it big time. But after a little more mommy love, she finally settles down for the night.

She still wears size 6 months pretty comfortably, but on Sunday I put her in a size 3-month dress and it fit her perfect ..not too big, not too small. I put her in her walker and she scoots around the kitchen. But normally she doesn't like being in it. I think she was only enjoying being in it because Violet was in the kitchen too.

(Scarlett with her big sister Violet)

Violet loves her little sister. She's always saying "I love her... she's so cute and tiny". I don't know who taught her "cute and tiny" but she says it all the time. Whenever she see's Scarlett's scar she says: "Scarlett has a boo-boo." and I say "Yes she does"... and she says: "She has a boo-boo on her heart... owie". and I say "yes". Scarlett wants to play with Violet more and more everyday. And of course Violet being an average 2-yr-old is insanely jealous and stingy with her toys. She is constantly saying MINE!, and grabbing toys out of Scarlett's hands. Poor baby. So, right now I'm trying to teach Violet that sharing is caring. After awhile, Violet calms down and plays nice, and brings her toys to Scarlett like a good sister. I love them sooooo much. I am so happy I have 2 little girls. Girls Rule! :)

First Word

2009-11-17T06:09:00.000-08:00

(She can sit up on her knees!)

Haven't had time to write recently (because when I get home I get scolded by Todd for playing on the computer), but I wanted to post a few new pics and to say that my little sweetheart has "officially" said her first word.

It's been a few weeks now (2 or 3?), but she very clearly, distinctly says "Ma-Ma" when she sees me. I am soooooooo proud and excited. I've been telling her "ma-ma...ma-ma....ma-ma" for months now, and it finally paid off. When I get home from work, the second she sees me, she starts crying and saying "Ma-Ma!... Ma-Ma!!"... I LOVE IT!!!

Scarlett turns 9 months old today, and she's doing so great. She sits up and plays quietly by herself for up to 15 minutes at a time! (terrific break for ma-ma, who otherwise is holding her constantly) She is crawling and sitting up on her knees. (see above pic). She is so happy, and I'm happy for her.

(Violet 2 1/2 years, Scarlett 9 months)

I was finally able to get a pic of my girls together. I love them so much and I am so thankful that I have them in my life. :)

The Kindness Of Strangers

2009-11-16T01:01:00.000-08:00

There is a quote from the Tennessee Williams's play 'A Streetcar Named Desire' in which the main character says "I have always depended on the kindness of strangers". I'm not saying that I have *always* depended on the kindness of strangers, however, it never ceases to amaze me. . . the kindness of others.

My work has a program in which those in need of 'leave' time can solicit others who have an abundance of 'leave' time. Those with several hours of accumulated vacation/leave time {who are willing and able}, may selflessly volunteer to donate some of their time to another who would otherwise be on unpaid leave...see where this is headed?

Back in February/March/April when I was on maternity leave caring for Scarlett post-surgery, I only had 6 weeks of my own vacation/sick leave. A call went out to my co-workers that I was going to be on unpaid leave (starting week 7), and the generosity came pouring in. I was able to be paid for at least 3 more weeks of my time which I otherwise would not have been.

Unfortunately, I am not able to properly thank these people because it is a policy that 'donors' are not revealed to the recipient for privacy purposes. Even if the donor says it is okay to tell the person that they donated, our personnel will not divulge who the kind strangers are. It's a shame, really. But it doesn't make me any less appreciative.

I guess it shouldn't surprise me because I believe in karma. A while back (2 years ago) I had a co-worker who experienced an unexpected medical emergency which required her to be off work to care for a very sick family member who had had a stroke. Although I had very little accumulated vacation time (only 2 days), I donated one day to her (which, at the time was quite a sacrifice!), because she needed it more than me. A year later, I donated again because it's the right thing to do. If you have...give. Be selfless. Be generous. Do unto others as you'd have them do unto you.

Well, once again, my co-workers stepped up to the plate to help me for Scarlett's most recent surgery (5-weeks ago today). I had obviously exhausted most of my sick/vacation leave (from being out for 3 months on maternity leave), and once again I would have been on unpaid time off. However, I was able to take 3 weeks off without any interruption in my pay. It is amazing...the caring acts of others. But it doesn't end there...

Last week, I received a phone call from a former co-worker (same company, different department). I hadn't worked with this person in 3 years and had only kept in touch through casual phone calls and in coincidental bumpings-into. She is retiring from our company this week after nearly 30 years of service. Needless to say that she has quite a few unused vacation hours that she has accumulated over the years. She had asked around my former office if anyone knew of anyone who was in need of 'time'. My name came up (she had no idea about Scarlett's heart condition).

She called me and said: I have time and I heard you need time... we got talking about Scarlett about her surgeries, about her recovery. This person said she would immediately send our Personnel division some 'time' for me (that is the only way I know who to thank... if they tell me themselves that they donated leave time to me).

I told her: "I'm going to write about this in my blog". I was so touched that she thought of (remembered) me and furthermore that she took the time to donate some of her leave time to me. Thank you Theresa.

I wish I could thank each and every one of of the people who donated their vacation time to me. I am truly humbled and grateful. My entire family (Todd, Violet, Scarlett and me) thanks you, whoever you are. God Bless You All : )

Clapping, Crawling, and Eating Peas

2009-11-11T19:48:00.000-08:00

This morning, I put Scarlett in the middle of the living room to play with some toys and I walked over to the kitchen sink to start a bucket of hot water to mop, and about 30 seconds later, there was Scarlett on the floor in the kitchen 12 feet from where I originally set her!

She's been scooting around lately doing the 'army crawl', but not really crawling up on all fours. But this morning, I saw it with my own eyes...she was up on all fours and making her best attempt to crawl. It was adorable because she looked kinda like a frog. She's move her front two 'feet', then sorta hop with her back two feet. But she was doing it pretty fast so she appeared to be actually be crawling/hopping like a frog. It'll be no time at all that she'll be really crawling on all 4's and then pulling herself up on the coffee table and couch. I'd say that her separation anxiety is now 75%, as opposed to 50% yesterday and last week. I think she's liking her new found ability.

Speaking of new abilities, Todd said today that she also went from a crawling position to a sitting position all on her own which she hadn't done up until now. I haven't seen her do it yet, but I can easily believe it given her new independence. :)

But wait, there's more!....she has a super exciting new ability: she clapped for the first time today! I wasn't clapping, and she wasn't watching anyone else clap, but there she was with both of her little hands clapping them together! :) Go baby girl!! Now, if I start clapping and say: "clap! clap!", she'll start clapping too. Totally precious. When I showed Todd today, we both almost started crying. She's so smart and so adorable.

Ever since she's been eating Gerber Puffs, I've wanted to start giving her finger foods. First Cheerios, and today I threw a couple peas on her high chair.

I don't know if she actually ate any of them, but she definitely went for it. She made a couple of funny faces... like what the heck are these? But she still tried them, which is great!

I can't believe it's only been 4 weeks/2 days since her 7-hour open heart surgery. She's doing so fantastic! Thank You God!

Heartmom Friends

2009-11-11T02:40:00.000-08:00

(Brenda with Diego [HLHS], me and Scarlett [TOF], Shelley with Ellery [TOF])

I had mentioned in a previous post that up until Scarlett was 2 months old, I only knew 1 other Heartmom. When I was pregnant, I asked (more like insisted) the cardiologist to be connected with another mom of a baby with a heart condition...preferrably one with Scarlett's same defect. Beth (Scarlett's cardiologist) gave me the phone number of Molly C and I called and left her a voicemail...something along the lines of "hi, u don't know me, but Beth gave me your number...and my daughter is going to be born with the same thing your son/daughter has and I was hoping we can talk..etc..". Then when she called back we had a very nice, long talk about how, when, where we found out about our baby's defects.

Then of course I had a million questions about what to expect during my hospital stay, surgery, post-surgery, etc...I am so thankful that I was able to meet Molly and her son in person last January (a month before Scarlett was born). Then, the day Scarlett was born, she was there to offer support and encouragement and we have kept in contact ever since, and for that I am thankful.

Well, in that same previous post "Heartmom", I also mentioned how I became acquainted with *several* other heartmoms back in April this year...and I wanted to take the time to mention again how utterly proud and happy I am that I know these other supportive and caring women.

(Molly W with Mark [HLHS], me and Scarlett [TOF] )

Last month, when I was in the hospital with Scarlett I had 9 (count them, nine) heartmom visitors. In order: Heidi A, Molly W, Jenna M, Kimberly V, Molly C, Radhika R, Heidi S, Brooke P and Rosemarie T. Allow me to back up a second... I adamantly told my friends and family that I was not allowing any visitors during Scarlett's recovery. In fact, my aunt who works for St. Joe's came up to the 7th floor and tried to see Scarlett (albeit the day of her surgery), and was turned away by the front desk (check-in station). They told my aunt that Scarlett was not allowed any visitors. So the entire time Scarlett was in there, I didn't have any visitors...except heartmoms.

When my first visitor arrived at the door (day 2 after surgery) to my hospital room, I joked with her ..."how did u make it past the guards?", then I joked: "I guess heartmom's are exempt from the 'no visitor' rule'" ; ) because heartmoms know all the staff on the 7th floor PCTICU, and usually don't have to stop to check-in. I'm so glad she came, I *love* seeing and talking to other heartmoms.

I said it before and I'll say it again.. no one understands you like another heartmom. No one understands the PCTICU environment, the medicines, the doctors, the IV lines, the nurses, the monitors, the alarms, the 'rounds', the feeding tube, the pulse-ox, the oxygen, the surgery, the recovery, the sleepless nights, the worry, the fear, and the successes like a fellow heartmom.

The clinic where I take Scarlett for her biweekly cardiologist visits is also on the St. Joseph's campus. So, when heartmoms (including myself) take their baby for their routine check-ups, and we know someone who is on the 7th floor, it's very easy and convenient to pop up there just to say "hi" to fellow heartmoms and heartbabies.

I think that can account for at least 5 of the 9 visitors I had (they were there anyway, and made the decision to stop on by since they were in the 'hood). But on the opposite realm, some of these heartmoms not only took the time to come visit me, they purposefully drove down to the hospital for the sole purpose of stopping by to see me and Scarlett. These heartmoms even brought me lunch, brought Scarlett toys, blankets and stuffed animals. They are so nice. I love my community of heartmom friends.

(Heartmoms: Heidi S (mom to Ethan[HLHS], me, Radhika R (mom to Rish [HLHS])

I am on Facebook and I am friends with 38 heartparents (wow! that even shocked me typing it!) I love reading their posts and seeing pictures of their heartbabies. It is so great! Facebook and this blog are such a godsend to me. I am thankful for modern technology, and most of all I am thankful for Heartmom friends. :)

By the way Scarlett is still doing really great. She's trying to crawl and still has moderate separation anxiety. She is 4 weeks post-surgery and she's doing better and better with each passing day. Thank you God for all my blessings today.

Exclusive Pumping Sucks...Literally

2009-11-10T00:49:00.000-08:00

Two nights in a row Scarlett has woken up crying a new cry. Actually, it's more like screaming that she's hungry. It's not her normal.."mommy I'm hungry, feed me please" pitiful little cry like before....it's more like a "mommy, I'M STARVING HOW DARE YOU IGNORE ME AND LET ME SUFFER?? WHERE'S MY FOOD?!!!" kind of cry. It's very demanding sounding, and it doesn't stop until she'd fed.

So, each night (same as the night before for the last 8 months) I get up, I microwave a cup of water, while that's cooking, I open the fridge, take out my pre-pared thickened, fortified breastmilk, take out a clean empty 4-5ounce bottle, pour out 3-4-5 ounces into the bottle...search for clean nipple and caps...wait for the water to finish warming up in the microwave (for 1 minute, 20 seconds), then I put the bottle of cold fortified, thickened BM into the hot water and I wait...and I wait...and I shake the bottle, put it back in the water....and I wait...and I shake some more...and I wait some more...

Then I test the temperature of the milk on the inside of my wrist...if it's still too cold, I put it back in the water, wait some more....and wait some more...and shake the bottle again and put it back in the water....then after about 5 minutes it's FINALLY done/ready to feed Scarlett. Total elapsed time: 6-7 minutes [From the time she wakes me up screaming, to the time that she's actually eating]. Did I mention that the screaming doesn't stop until she starts eating? Because it doesn't......and did I mention that it's not a casual: "I'm hungry-it's time to eat" cry...it's more like a: "I'm starving when-the-heck-are-u-gonna-feed-me-how-much-longer-is-it-gonna-take-you-bad-mommy" cry. Because yeah... for the ENTIRE 6-7 minutes she screams her head off inconsolabaly. My poor baby.

So it just makes me ponder...is this worth it? Is making her wait and get upset worth the value ane benefit of breastmilk? It would be completely different if I could at least nurse her, but I can't. I have to pump. And I hate it. : (

More than once in the last 8 months I've gone on several breastfeeding websites to remind myself the benefits of breastfeeding and I just roll my eyes when I read information such as this:

· When you breastfeed, there are no bottles and nipples to sterilize. Unlike human milk straight from the breast, infant formula has a chance of being contaminated. (Obviously *not* true if you have to exclusively pump and feed your baby expressed breastmilk)

· Breastfeeding makes your life easier. You do not have to purchase, measure, and mix formula. There are no bottles to warm in the middle of the night! (HA! I wish! again, not true if you're forced to exclusively pump AND fortify your expressed milk)

· Breastfeeding can save you between $1,160 and $3,915 per year, depending on the brand of formula. (yeah, cut that number maybe in half if you have to fortify your breastmilk depending on the calorie recipe 22-24-26-28 calorie..the greater the calorie, the more formula u use and before Scarlett's surgery she was at 28!...so definitely not "saving" on formula!)

· A mother can satisfy her baby's hunger right away with breastfeeding. (I'm coughing from gagging on the sarcasm...see above story in this post!)

· Breastfeeding requires a mother to take some quiet relaxed time for herself and her baby, helping them bond. Physical contact is important to newborns and can help them feel more secure, warm, and comforted. Breastfeeding mothers may have increased self-confidence and feelings of closeness and bonding with their infants. (I wasn't even able to SEE Scarlett for 12 hours after she was born...and I wasn't able to hold her for 48 hours! Bonding??? I don't think so.)

So back to the title of this post...sorry to burst any heartmom's pipedreams of breastfeeding/nursing, but exclusive pumping (if you are forced to do so) really is the pits. It sucks...literally and metaphorically. Other websites say a benefit of breastfeeding is convenience. Like, you don't have to worry about packing formula, bottles, nipples, water, etc, when 'on the go'. NOT TRUE if you're exclusively pumping. It's waaaaay more work.

Whenever I take Scarlett to the cardiologist, or to the pediatrician, I have to pack way more than if I was simply nursing. I have to pack a mini-cooler with an ice pack and prepared bottles of fortified/thickened breastmilk. THEN on top of that I have to pack a coffee mug to warm water in...THEN on top of that I have to pack my breastpump and ALL the accessories. Two bottles, two caps (or breastmilk storage bags), the flanges, the connectors, the membranes, the powercord, the tubes, and a cover-up if I have to pump in public. It's far from "convenient".

Here is a pic of a pump (similar to mine) and the accessories I have to clean and remember to bring with me:

Please don't misunderstand me... I am a pumping queen. I'm an "exclusive pumping" champion and I wouldn't change it for the world (okay maybe I would change it for actualy nursing!)... but after 8 months, I'm tired, Scarlett's more demanding, and I start to lack the confidence and forget the true benefits of breastmilk. Reading passages like I mentioned above do nothing to boost my willpower, and I find myself thinking what am I doing this for? But something inside me tells me only 4 more months.

Subconsiously I give myself a guilt-trip thinking..look at what your baby went through!, the least you can do is pump some milk for her... quit complaining you whiner! Then that usually peps me up for the next pumping session.

Other 'exclusively pumping' heartmoms are a major source of encouragement for me. I think: if they can do it, so can I! But when I hear about moms that give up... I'm tempted. I think... Wow, it would be so nice to be able to not be in pain, to not clean my pump parts... etc.. But then the little voice inside me says: Knock it off Melodie! suck it up and do it for Scarlett! So, I motivate again to another day with me and my pump.

Okay that's enough therapeutic venting for today. If you're still reading this, thanks for letting me use my blog to pour my heart out about the woes of exclusively pumping. I appreciate your time. :) back to pump now... mooooo!

Chowin' Down On Gerber Puffs

2009-11-08T20:58:00.000-08:00

Scarlett had a really good day today. She was very happy. She had a good night too. I sat her in her high chair and gave her some Gerber Puffs and she chowed down. It was great!

(see the puff on her right arm?)

Before surgery I introduced Gerber Puffs to her and she choked the first couple of times, but was beginning to get the hang of it. I've been afraid to give them to her post-surgery, but today she seemed ready. I put a few on her tray and watched as she spread them everywhere and carefully picked them up one by one and put them in her mouth. It was so precious. She just went for it immediately. Of course, she didn't eat them all, and they were all over the place... the floor, her cheek, her arm, inside her onesie, in between her and the high chair etc. But I would say that she did eat a fair amount of puffs.

She was doing so well with the puffs that I threw in some Cheerios too, and she crunched and munched those too! I'm so happy for her. But on a weird note, she was fine with HER putting them in her mouth, but everytime I tried to put on in her mouth she turned her head and gave me a dirty look like ...how dare you try to feed me?!...but then went back to grabbing them with her little fingers and stuffing them in her mouth. I tried at least 3 or 4 times to put a Cheerio or Puff in her mouth and each time she firmly closed her lips and turned her head away from me (the little stinker!). I don't care though. She was very happy and content eating her little finger foods.

This morning I also let her gnaw on a Gerber Biter Biscuit. I watched her diligently the entire time to make sure she didn't choke, and she did very well. I took a few pics:

P.S. Yes, she's a U of A Wildcat's fan, because her mom is a U of A alumni! Go Cats!

100% Voice Back

2009-11-07T11:07:00.000-08:00

This morning me and Scarlett were hanging out on the bed, when it dawned on me that she has 100% of her voice back. That's great news. I can hear her crying from across the house. Before she still sounded real faint when she cried, but now, she's back to her old sweet adorable voice. :)

Yesterday I was able to put her in her exersaucer and she was very happy to be in it.

Everyday she is more and more like her 'old' self. The only difference I notice (other than the obvious pinker color) from her old self to her new self is that before surgery she was completely disinterested in pacifiers. She hated them. We had them, but hardly ever used them, because she preferred to suck on her pointer finger rather than suck on a pacifier. Well, surgery changed all that...

She LOVES her pacifier now. It calms her down and definitely soothes her. We always have to have them around for when she gets fussy. I was already thankful that Scarlett wasn't going to be like her big sister Violet (a binky junky), who is totally addicted to her pacifier which she calls a binky. But no such luck...maybe since Scarlett still likes sucking on her finger she'll outgrow the pacifier faster than Violet, but I'm obviously not going to take anything away from her right now.

She's been a lot more 'less fussy' lately which is a Godsend because Todd and I are exahusted from having two extremely clingy and needy children. Violet has been uber clingy lately probably because of being ignored frequently, and Scarlett had TWO teeth coming in on the top! So she was extra super fussy because she was teething big time. She'll have her two front teeth for Christmas, so she doesn't have to ask Santa for them (get it? the song..? oh never mind..)

So, now Scarlett has 3 teeth on top and 2 teeth on bottom. But the 2 new teeth on top are barely breaking through and one of them is pretty big!

Overall, she's been a lot happier lately. I'd have to say her status has changed from "High Maintenance" to "Medium Maintenance". ; ) and probably by next week, she'll be all the way back to her old self of "Low Maintenance", or Zen Baby as we used to call her.

Shameless Plug for Snuggin'Go

2009-11-05T21:50:00.000-08:00

When Scarlett was around 3 months old, I attended a small meeting with other heart moms when I noticed that all of them (well, those who brought their heart babies) had a contraption in their stroller/carseat called a "Snuggin Go". It is an infant positioner and support system that promotes oxygen circulation and and head support. Scarlett is pictured here with hers:

Back in June (after that meeting), a fellow heartmom told me that Beth (Scarlett's cardiologist) could get me one at a discount. So the next time I was at clinic (a biweekly cardiologist appt for Scarlett) I asked Beth about the Snuggin Go and told her that another heart mom said that I could get one at a discount.

Let me back up for a second... Beth is actually a nurse practitioner... not a cardiologist, but I always call her 'My baby's cardiologist' because she is the one I page at all hours of the night, and she's the one I've seen every 2-3 weeks since Scarlett was born, she's the one who calls to check on Scarlett, she's the one who was there the day Scarlett was born, etc... I love Beth, I cannot say enough positive things about her. She is an amazing person and I have the highest respect for her. I've been working with Beth since November last year [2008] when I found out about Scarlett's heart defect in utero (when I was 25 weeks pregnant).

Okay back to Snuggin'Go...so I was at clinic back in June when I asked her about her product (she created/invented it), and she tells me... "I'm doing a photo shoot this Sunday at my house for the 'Snuggin'Go Too', do u want to bring Scarlett by to be in the photo shoot?"...and of course being the proud momma I am, I said "OF COURSE!". So, back in June I took my unassuming little 4-month-old sleeping baby to Beth's house for a photo shoot to launch her new product.

The photographer took pictures of Scarlett sleeping in her carseat (because she was asleep when we arrived), then we woke her up and took pictures of her with the Snuggin'Go. There were other babies at the photo shoot of varying ages and taking pictures in high chairs, jogging strollers, swing, bouncy seat, etc.

Well, Scarlett fell asleep towards the end of the photo shoot and Beth said she wanted a few additional photos for a true 'before and after' comparison (since all the other before pics Scarlett was sleeping and all the after pics she was awake). So the photographer took some more 'after' pics and we left not knowing the true specialness of those last few photos.

Well....it turns out that the before and after pictures came out so good that Beth used them on the Snuggin'Go website! check it out! My baby is a model! : ) Totally exciting! And that's not even where the excitement ends... Scarlett's picture is going to be featured on the actual product!!!...Meaning, very soon when you purchase a Sunggin Go, Scarlett's before/after images will be in the paper insert! on the packaging AND furthermore... the actual product will be sold at major retail stores like Target and Babies 'R' Us as soon as 2010 (next year)!

I've known about this for a long time (well for at least 4 months)... but wanted to post this on my blog because I am so proud of my baby. : ) If I had known her pics were going to be on the product and sold nationally, I woulda at least put a bow on her or something... ; ) ...but it doesn't matter. She's still a model (albeit a sleeping one) nonetheless.

Now for my shameless plug on the Snuggin Go... because, believe it or not the first 8 paragraphs weren't promoting the product itself. I've been using it since late June and I absolutely love it. You can really see a difference in Scarlett's posture when she's using it. I wish I had several of them...one for the high chair, her crib, and definitely for her hospital bed. It really helps them keep their chin off of their chest and their head from slouching over when they fall asleep in their carseat. I do support/promote this product 100%. Every mom should have one, especially heartmoms!

The advertisement for the Snuggin'Go will be featured in a couple of upcoming magazine issues (but I can't for the life of me remember which ones..) I'll post which ones in a later post. It was already featured in "Raising Arizona Kids" magazine. It's pretty exciting. When I figure out which national magazines it'll be featured in, I'll post it and I'll also post the pics of the insert with Scarlett as the Before/After model.

In the meantime, if you're a heartmom, I highly recommend purchasing and using one, they're worth it! :)

My New License Plate!

2009-11-05T02:34:00.000-08:00

I had posted back in September that I ordered a new license plate from the AZ Dept of Motor Vehicles (http://www.servicearizona.com/) to signify my new title of "HeartMom". I checked the mail everyday [which is *not* like me] for it to come. Todd even asked me: "Are you expecting something, why do you keep checking the mail everyday?" You see, we are notorious for only checking our mailbox once a month...if that... because it is kinda far from our house, and evidentally we're both extremely lazy.

I mean, when I was growing up, the mailbox was RIGHT IN FRONT of my house. It was simply a matter of walking to the end of my driveway to check the mail. Plus, you knew when the mailman was coming because you could hear their vehicle approaching from a few houses down. Sometimes when the mailman (okay, mail'person') had an oversized package (bigger than our rather smallish mailbox), he would actually walk up to our front door, ring our doorbell and HAND DELIVER our mail to us [imagine that!].

But nowadays, in new home communities in Phoenix, you have to walk 4 houses down and one block over to the 'common mailbox area' and remember to take your key just to check your mail. It's a pain in the booty and I therefore hate checking my mail (and only do it once a month). Only a couple of times has my lackadaisical mail retreiving efforts backfired (i.e. my Target 10% off coupon expires in 30 days, and I'd wait 32 days to check my mail, therefore missing out on my limited time discount). But usually 9 times out of 10, I never missing anything important, so no harm, no foul in only checking the mail once a month.

However, after I ordered my new license plate online, I checked the mail every single day up until Scarlett's surgery. When it hadn't arrived before October 12, I knew it would be waiting for me when we came home and sure enough... I was right.

Sorry for not posting my new license plate pics sooner, but that certainly doesn't diminish the fact that I'm utterly proud of my new plate. :) Todd was even kind of jealous...he said "I want one too" with a pouty face. So I said "really?... I can order you a HeartDad one if you want", and he said yes. So, that's next on the agenda.

I also have my new bumper sticker on my Jeep to go with my new license plate:

I'm pretty gosh darn proud to display both. :)

Human Pin Cushion

2009-11-04T19:17:00.000-08:00

It's been three weeks and 2 days since Scarlett's 2nd open-heart surgery and every time I change her diaper, I'm reminded that she was a human pin cushion throughout the duration of her hospital stay. The site where her groin arterial IV line was located is still very obvious to see when I'm changing her diaper. Don’t know if I mentioned it or not, but they actually SEW those IV lines in! So she has holes from the arterial IV needle and holes from the multiple stitches to keep it in. (same with the arterial IV line in her neck).

In addition to her left groin, she still has needle prick marks on both hands, both feet, both wrists, right neck, and the insides of both of her elbows (I don't know what that area is called, but its where most lab phlebotomists take blood from and where United Blood Services draws blood from.)

Speaking of United Blood Services, I have an appointment on Monday to donate. This will be my third time donating blood (I’ve attempted before, but I usually don’t pass the iron test). I told our blood donation coordinator, Kathy, that I will ALWAYS be a blood donor because of Scarlett. She had to get blood for both her first and second surgeries.

Well, I’m happy to announce that Scarlett is doing fantastic. Every day is a little better than the previous. She’s getting less and less fussy and more and more independent. Slowly she’s returning to her previous (pre-surgery) self.

At yesterday’s cardiologist appointment she only weighed 13lbs, 4 ounces. I was very sad because last week, she weighed 14lbs 4oz, so she lost a whole pound in a week! [not good] :( But Beth (Scarlett’s cardiologist) wasn’t too too concerned. She said it was because Scarlett was throwing up so much and we had to do 1/2 milk and 1/2 Pedialyte (not enough calories to gain weight successfully) for a few days.

So yesterday Beth said to increase my breastmilk calories from 22 to 24. That means I add 2 teaspoons of Nutramigen baby formula to every 6 ounces of my breastmilk. (No biggie). Hopefully she’ll beef up a little bit. She’s definitely getting her appetite back which is just marvelous. :) We don’t have to go back to the cardiologist for 2 weeks. And maybe this next time it’ll be for 1 month, then 3 months!! I can’t believe or imagine a day when we only have to go once every 3 months! Hello normalcy… here I come!

Oh, and I was a little worried about her coming off the oxygen prematurely, but at yesterday’s cardiologist visit she was 100%!!! Yeeeeeee haw! Fellow heartmom Julie was teasing me yesterday at the CHIEF graduation saying that Scarlett was just ‘showing off’ that she was tube free… like Scarlett was saying ‘look at me, no oxygen ha ha, look at me no feeding tube, ha ha!’, because Julie’s poor baby Eva still has both. : ( poor lil darling. Julie was carrying around Eva in the front with two backpacks in the back. One for the feeding pump and one for the portable oxygen tank. I feel very bad for her, and I count my blessings that Scarlett is doing so well.

Things are getting better and better everyday and I’m so happy. I feel really lucky and truly blessed. :)

CHIEF Graduation

2009-11-04T00:17:00.000-08:00

Today Scarlett graduated from the CHIEF Program! ABC news was there in the morning and interviewed fellow heartmom Shelly (London's mom) and Scarlett's cardiologist Beth. You can see their interview here.

Every year, St. Joseph's Hospital performs close to 300 pediatric open-heart surgeries. Of those patients, some children will never need another surgery again. Some children will need at least two, and some children will need 3,4,5 or more, or a lifetime of surgeries and visits to the cardiologist. Of those 300, the top 20 highest risk patients are automatically enrolled in the CHIEF Program. Highest Risk means they are most vulnerable to die a sudden death caused by their heart condition.

The CHIEF (Complex Congenital Heart Infant Evaluation and Follow-up) Program is a home surveillance plan, adapted from the home monitoring program developed by the Children's Hospital of Wisconsin. Scarlett was sent home back in March (after her first open heart surgery on Feb. 25) on a feeding tube, and a pulse-oximeter machine. The hospital gave us a red notebook "the CHIEF notebook" with information on Scarlett's heart condition, her medications, her doctors, her feeding(s), and the CHIEF program.

To quote from the red notebook "While many children with complex congenital heart disease are stable enough to go home from the hospital after their first operations, they are still at high risk for complications due to the nature of their heart disease. Because these children have to maintain a very sensitive balance in their oxygen flow and their hydration, even a small change can lead to a critical or life-threatening situation. Many of the children enrolled in this program have only a small (3-4mm) tube that brings blood to the lungs to get oxygen, and this is their only supply of blood to the lungs. If the child becomes dehydrated, that shunt can develop clots and close off. For this reason, even a minor illness in these children needs to be taken very seriously and parents are instructed to call the nurse-on-call to expedite triage with the cardiology team."

"The CHIEF program involves frequent office visits and phone contact with the caregivers of these patients, in order to closely monitor their oxygen saturations and weight gain. Each CHIEF infant has an individualized care plan and will be seen weekly, biweekly and/or monthly depending on the infant's status"

"Use of pulse oximetry and weight trends in this group of high-risk patients has also been found to be helpful in determining timing for the next stage of surgical intervention. At approximately 4-5 months of age, or when the pulse-oximetry trends are consistently in the 70% range or the child begins to fall off their individual growth curve, the next stage of repair is usually indicated. (meaning time for surgery #2 or #3). The patient's circulation (after second or third surgery) is deemed more stable and the child will graduate from the CHIEF Program."

Me, nurse Asia and Scarlett

Dr. Lane, Beth and Scarlett

Today was a big day for Scarlett. She and 17 other babies graduated from the CHIEF program. It was a beautiful ceremony in the Healing Garden of St. Joseph’s Hospital (in Phoenix). They served a really nice brunch and had a celebratory cake (it was beautiful!). This was the 2nd CHIEF Graduation ever held, and I took tons of pictures.

All the heartmoms and heartbabies honored today

the cake

us with Dr. Pophal (her cardiologist from now on)

Todd, Scarlett and "the God" Dr. Cleveland. (he saved her life!)

It was nice to socialize with other heartmoms, and to see ‘former graduates’ in attendance. I had no idea that Scarlett was in the top 20 “high-risk” category. I knew she was CHIEF, but I guess I didn’t realize how dire her condition really was.

What a wonderful program for St. Joe’s to offer and what an extremely thoughtful idea to honor and recognize all the heart babies and heart parents of these extra special and fragile babies in a graduation ceremony.

Baby's First Halloween

2009-11-02T01:46:00.000-08:00

I bought Scarlett a Tinkerbell costume at Babies R Us the day that they put out the costumes (back in August). I've been looking forward to her wearing it all month. I was so sad when I thought there was a chance that she may still be hospitalized on Halloween, and I still feel so lucky that she's doing fantastic considering all she's been through.

We had planned all along that I would stay home and hand out candy and Todd would take Violet Trick-or-Treating. But the morning of Halloween, my friend invited us to her sister's house for a Halloween party for kids. She said it would have 'the works'. Costume contest, bobbing for apples, games, halloween treats (popcorn balls, pretzel broomsticks, carrot fingers, white chocolate covered donut hole eyeballs, rat cupcakes etc). I told Todd that we couldn't let Scarlett be around all those kids especially it being RSV season. I told Todd "If u can get Beth's blessing to go, then we'll go, otherwise we stay".

So Todd called Beth and asked her if we could go (I still never verified, but I'm taking his word for it), and according to Todd, Beth said that it would probably be good to get Scarlett out of the house and for her to see other kids and it might actually help with her separation anxiety. So, around 5pm, we loaded the kids and headed over my friend's sister's house. The place was totally decked out for Halloween and everyone was in really cool costumes.

Violet was dressed as Supergirl, she was the smallest kid (next to Scarlett).

I was a hippy, Todd was a scary monster, Scarlett was Tinkerbell and Violet was Supergirl.

We took Scarlett Trick-or-Treating with Violet (well, I held her and just followed the kids, we didn't walk up to the door, we stayed on the sidewalk) and Scarlett had such a good time being amazed at the outside world. I'm sure the fresh air did her good. She's never really been outside before except on the walk from the garage to the doctor's office.

Violet ate more candy on Halloween than she's ever eaten in her entire life. (I don't give her candy...ever). I'm surprised she didn't puke!

Scarlett wasn't scared of Todd's costume (notice her little magic wand?). She wasn't scared of anything. She just stared in wonder and awe at everything. We didn't stay long. We left around 8pm and were home by 8:30.

About an hour after we got home around 9:30pm, our doorbell rang! It was tardy Trick-or-Treaters!! I had bought 7 bags of candy because my neighborhood is loaded with kids and we were hit hard last year, I had an entire witch's cauldron FULL of candy leftover since we ended up going out and since I CAN'T EAT IT because of my lactose-free diet. So, I told the group of 5 kids..."take as much as you want". So they weren't modest, they scooped, and scooped, and scooped candy into their no-longer-empty loot bags. I'm pretty sure I made their day/night/year. :)

Todd took Scarlett inside of a garage-turned-Haunted-House. Violet was super scared and Todd had to carry her but he said Scarlett giggled the entire time. My fearless little heart baby. Overall, a good time was had by all. I coudn't have hoped for a more memorable Baby's First Halloween. :)

Thriving!

2009-10-30T11:52:00.000-07:00

As I mentioned in my last post, I knew Scarlett was really really close to coming off the feeding tube and the oxygen nasal cannula. This morning Beth (Scarlett's cardiologist) called to check on Scarlett. I told her that last night I had downed Scarlett's oxygen to 1/32 liter for the next 24 hours. I also said that I had started to bottle feed her and she hadn't thrown up yet. She even took a Motrin/Lasix bottle barf-free. So Beth said to go ahead and turn off the oxygen and pull out the tube and see how she does. and I said "you mean right now", and she said "pull it all out!".

Sooooo.... I'm happy to introduce for the first time since she's been home, my tube free happy baby:

After about 10-15 minutes I checked her on the pulse oximeter machine and and she was still above 95!! yahoo!

I went to take another picture of her on the bed and she was on all fours trying to crawl away!

Well, she's still not crawling yet, so I wasn't really worried about her actually crawling away, but she was still on all fours (first time ever) and rocking back and forth like she wanted to crawl. I am sooooo happy.

My baby is happy too. She's at least 50% better than she was yesterday (high maintenance wise). Probably because she's so happy being tube free. I'm going to continue to spot check her throughout the day to make sure her oxygen levels are above 95, but for now, we're just celebrating that she's happy, she's home and she's tube free. : )

Don't get me wrong, she still can't bear to be separated from us even for a second... but she's so much happier today than she was for the last 3 days. : ) and I'm super happy she can go anywhere in my house instead of in the 6 foot radius in my living room. Yippee! It's a beautiful day!

High Maintenance

2009-10-30T01:26:00.000-07:00

According to the dictionary and Wikipedia, high-maintenance is defined/described as 'one who requires a lot of attention'. Boy is that an understatement! I can only surmise that it is related to separation anxiety, but these last 3 days have been the most trying of my motherhood. Scarlett is only happy if she is in my arms or I'm in her immediate vision. If I step away even for a second, she screams bloody murder (probably learned that from her 'terrible twos' sister Violet).

It's funny actually... tonight Todd was holding her and singing to her to calm her down, and she relaxed and was actually falling asleep. The very moment he stopped singing to her..within seconds, she was crying again arching her back and kicking and screaming. Then he'd start his little tune again...and she was instantly soothed again. Then when he'd think she was asleep, he'd stop singing, and on cue she'd start crying, screaming, and having a temper tantrum/fit as only an 8-month-old can. It was amazing to witness...(I wouldn't have believed it if I hadn't seen it with my own 2 eyes!)

I literally cannot put her down or she has a royal cow. I don't mind holding her all day (walking, sitting, standing with her), but it is very hard to make her medicine/food syringes, check for ng tube placement, open bottles of Pedialyte, and do other things one-handed. [because she's in my other arm]. Here is a pic of the tools I use when I'm tube feeding her that need to be washed (one-handedly) after each tube feed...which is every 3 hours:

It wouldn't be that big a deal either if she wasn't tethered to the oxygen tank and I didn't only have about 6 feet of clearance. But that would be nothing if she wasn't a holy screaming terror for 18 hours a day. It is taxing on your nerves. I love her more than words can say, but sometimes even when I'm holding her...and she's changed, she's fed, she's warm, SHE'S STILL CRYING!...so I think to myself "Calgon Take Me Away!!". What happened to my adorable, calm, happy baby?? She was never like this before surgery. :(

Violet, on the other hand (her tyrannt two-yr-old sister), was a screaming terror from the second she was born and has never stopped. I'm already used to Violet being high maintenance, but my sweet little precious little, soft spoken little Scarlett..the one I refer to as my little Zen baby?... No, this is a first, we're talkin' major unchartered territory.

On a side-note...she barfed again at 3 am yesterday (24 hrs ago) when I had gotten her back to 100% breastmilk. So we backtracked a little and put her back on the 50/50 concoction. and she seems to be doing okay. Also tonight I offered her a bottle by mouth and she sucked it down like nothing (she drank it all up and very fast too). An hour or two later, we gave her another bottle and she drank that too. So far so good. No barfing yet. (knock on wood).

I even gave her Motrin and Lasix in a bottle and she drank it just fine. If she keeps up with this and continues to be barf-free, I have no problem pulling the feeding tube fairly soon! :) yay!

Also, I had lowered her oxygen to 1/16 from 1/8 yesterday. Then today when I was walking around the house with her, I had to unplug her from the tank..(like to go to the kitchen to make a bottle). She was unplugged and on 'room air' for at least 10 minutes. I spot-checked her on the pulse-oximeter and she was right around 95-96 which is great (they want her over 95). So,...in addition to probably being able to wean her off the the feeding tube, we're very close to weaning her off the oxygen too! yay! yay! yay! I turned down the oxygen a few hours ago to 1/32. Maybe by tomorrow night she'll be fully weaned?! You can see the tank in this pic:

I know there are other reasons why Scarlett has been so needy lately other than separation anxiety. She is also teething, and she could have tummy (gastro-intestinal) problems related to acid reflux. I'm still on a lactose-free diet to help with her tummy problems and let me tell you... it S U C K S!!! I have a huge bowl of Halloween candy (Snickers, Kit Kat, Butterfinger etc..) that I can't eat. It's torture!

In the morning, I can't have a bowl of cereal, I can't have yogart, I can't butter my toast...for lunch, I can't make a grilled cheese, chese crisp, NO PIZZA!! Man, I guess I don't realize how much dairy I eat until it's taken away from me! But I think the most important lactose-free sacrifice I'm making is NO CHEEZ-ITS!! It's no secret that I'm totally addicted to Cheez-Its. I joke with my sister that I keep a box at work, box at home, and a box in my car!!! ; ) I love Cheez-Its! I miss them already and it's only been 3 days! But I will do anything for my Scarlett and if it means giving up Cheez-Its, then so be it. :)

Sorry this post is so long. It's kind of like 3-blogs-in-one, I really haven't had time to write since she's been so high-maintenance lately. But she's asleep right now and I'm up pumping and blogging. :)

Separation Anxiety

2009-10-28T02:24:00.000-07:00

I had to call Beth (Scarlett's cardiologist) tonight to ask if it was okay to feed her 1 ounce every hour versus 3 ounces every 3 hours. Just to get something in Scarlett's gut in the short term, instead of making her wait 3 hours to get something in her tummy. She said it was not preferred, but okay for now. Eventually we want Scarlett's tummy to expand/contract for a 'full' feeding (3-4 ounces) rather than just 1 ounce per feeding. Makes sense, but I still wanted to start small for now.

So from 6-9pm, I gave her one ounce (50% Pedialyte / 50% lactose-free breastmilk) on the hour. She tolerated her feeds rather well. She spit up only once, but it was exactly that...spit up. Not barf. Thank God. Then around midnight I tube-fed her 3 ounces (of my 50/50 concoction) and so far she's keeping it down. yay!

While I was talking to Beth, she mentioned to me that it's quite possible that Scarlett is suffering from separation anxiety. She said it's common in this age group. Evidentally between the ages of 8 months and 1 year, is when separation anxiety is first likely to appear. Beth (unbeknownst to her) practically had me in tears talking about how Scarlett was nice and comfortable with her mommy and daddy pre-surgery... in her own house, her own crib, nice and happy and secure....then October 12, we completely turned her perfect world upside down and broke her trust.

Everything that was sacred to her... her home, her caregivers, her life...was taken away from her, then to add insult to injury she had horrible things done to her...poking, proding, needle pricks..bandage tape removal, tubes shoved down her throat, a different nurse (caregiver) every day/night. Now that she's home again, she's getting used to having mommy and daddy back, but the second we put her down she screams and cries until we pick her back up again. It's almost like we can't put her down. Even if she's sleeping we can't put her down because she'll wake up the second she leaves our arms. Poor, poor little baby. :( In her 8-month-old brain, she thinks that if we leave her, we're never coming back. :(

Separation anxiety never even occured to me. It may or may not explain the barfing, but it totally explains her behavior in the past 3 days. Uncontrollable crying for no apparent reason..screaming when we put her down...calming when we pick her up, etc.

Tonight was a much, much, much better night than last night or the night before. Maybe it's a combination of slowly introducing milk back into her diet, or the extra TLC (tender loving care) we're giving her (like not putting her down even when she's calm)...but something has helped and she is sound asleep tonight (on the living room floor sleeping right next to daddy) and doing much better. We've also been able to turn down her oxygen to 1/8 liter from 1/4 liter. We're going to try to wean her slowly off that which will be nice since she's tethered to her oxygen tank (hence sleeping on the living room floor next to the big oxygen tank). Everything in baby steps. But she's slowly on her way to becoming a 'normal' baby.

It's been so long I'm almost starting to forget what it is like to have a 'normal' baby. One without a feeding tube, one without pulse-ox, oxygen, weekly doctor appointments, etc. I will be happy when I can finally be able to take her to the store or to church. Allbeit months from now since it's cold/flu season... I'm just looking forward to some sort of normalcy in our future.

Good News

2009-10-27T17:35:00.000-07:00

All the lab work (blood work) came back 100% okay. Meaning, she does not have any sort of infection currently or brewing. That's great news. Her ears, lungs and throat look clear. That's a good sign.

So, her screaming episodes are probably from hunger. and she's probably hungry because she's only surviving off of minimal amounts of Pedialyte. But starting tonight (after 24 hours on Pedialyte barf-free), I can start giving her half breastmilk and half pedialyte. So that's what we're gonna do.

I've also been ordered to cut out all lactose from my diet in case her tummy isn't able to handle it. So I've been milk/cheese/butter/yogart free since yesterday (24 hours). In her next bottle, we're gonna do the 50/50 to see how she handles it... well, I mean in her next 'tube feed', not bottle. Nothing by mouth quite yet...for fear of barfing.

Up All Night

2009-10-27T07:27:00.000-07:00

Todd & I are surviving off of 3 or 4 hours of sleep (not in a row, either). Scarlett was up the entire night crying, fussing, screaming, whimpering and just plain suffering in some shape or form. Then just when you think she's settled down for a little nap, she starts all over again. : (
We're afraid to feed her because she barfed again last night around 8:00pm. I waited three hours and gave her 1 ounce of Pedialyte. Then an hour later, another ounce of Pedialyte, and an hour later another ounce. She finally fell asleep 'for the night' at 2:30am (therefore I was up that entire time), and she woke up at 5:00am. I have her another ounce of Pedialyte (all through the tube), and she cried herself to sleep again.

Then I had the alarm clock set tor 6:30am to get up for the doctor's appointment at 8am. She was peacefully sleeping and I had to wake her up when I got up (she was sleeping right next to me, that's the only way she would fall asleep at 5 this morning.)

So, now she's up again and screaming her head off and very unhappy. : ( She did have a slight fever last night 100.2, but the hospital said they don't consider it a fever until it's 101. I really hope the doctor's can figure out what's going on with her today. Well, I mean it doesn't take a genius to figure out she's starving, but since she keeps barfing, we can't really feed her. So I hope they can figure out why she keeps barfing. : (

Vomiting And Feeding Tube Woes

2009-10-26T19:10:00.000-07:00

We had to put in a new feeding tube on Saturday night. But in doing so, we had to put in two because we put one down, checked for placement, and didn't hear anything so we thought it was in her lung instead of her stomach, so we pulled it out, and put another one in. It turned out that these weird new feeding tubes we have (the orange ones not the blue ones) have two openings on the end and one of the openings was not plugged. D'oh!

Well, then Saturday night she pulled it out (as I previously mentioned), so we put it back in (the same tube) again. Then on Sunday she pulled it out again and I put it back in. Sunday night when we checked for placement, we heard strange noises coming from her nose so we pulled the tube and put the last new tube we had in.

That makes 5 times we had to put a new feeding ng tube down her nose in a 24 hour period. : (

I don't know if it's related or not, but Scarlett threw up on Saturday night after Todd put the tube back in then tried to feed her. Yesterday, she threw up again. A couple of times. We called Beth [her cardiologist]and she said to monitor her and start giving her Motrin round the clock because helps with inflamation around her heart post-surgery.

Last night she was really super fussy. She went to bed pretty late (almost midnight), but then woke up practically every hour screaming (as best as she could with 85% of her voice). She was not happy the entire night. She would wake up crying and she hardly ate anything at all the entire evening. I mostly tube fed her because she wasn't drinking by mouth. This morning we called Beth again, we have an appointment tomorrow but we were so worried about Scarlett's restless night. Beth of course asked what her oxygen levels were and they were normal. We were just gonna wait and see what happens today since her sats are good.

Well, this afternoon, she threw up again. Then Todd waited a few hours and tried to feed her again and she threw up yet again, but this time it was dry heaves. Todd said it was horrible (to sit and watch her throw up), and it looked painful. Todd called Beth and she said to stop giving her breastmilk and start giving her Pedialyte until tomorrow. She's scheduled to have a chest x-ray, echocardiogram and exam tomorrow. I hope they're able to figure out why she's not eating and why she keeps throwing up. : (

Pulse Ox Before/After

2009-10-25T02:27:00.000-07:00

It still amazes me to see her pulse-oximeter machine with her new numbers when compared to her old numbers.

Before surgery it was reading 74% oxygen:

After surgery it is reading 98% oxygen:

What a difference 2 weeks makes....

Today Scarlett pulled out her feeding tube. Todd & I had to struggle to put a new tube in. Scarlett was not happy, but now she has a new tube and a new oxygen cannula (and obviously new cheek stickers too). I had spoken too soon in my last email (that she was being such a good girl and not pulling at her tubes). So we had to put newborn mittens on her as as seen in this photo:

But wouldn't you know it, she knows how to pull those off too. I can't wait until she's off of both (feeding tube and oxygen).

Poop!

2009-10-24T02:14:00.000-07:00

Most mothers would think I'm crazy to be so excited about a poop, but hopefully other heartmoms will completely understand why I was doing the happy dance yesterday. Scarlett *finally* made a poop! A good poop, none of the small stuff like in the hospital...as forced to by the glycerine suppository.

She made a genuine, "old school" Scarlett poop. I was soooooo happy. Finally her bowels are functioning again like they should be. I felt so great for her. It had been almost 12 days without a 'real' poop... so I was so relieved and happy that she was finally 'making room for more'. Okay that's enough of that.

Now on to more decent updates. She seems to be returning to her normal (pre-surgery) self. Trying to scoot around the house...or at least trying to scoot around the 6 foot radius that the oxygen tank cord will let her. Rolling over, playing with her toys, teething, biting on her freezer toys, sitting in her high chair etc. The only thing she can't do yet that she could do pre-surgery is sit up unsupported. But that's okay, I saved her bumbo seat. I've put her in there a couple of times, but it's really hard to get her out of it since we can't pick her up by her underarms.

The hospital (and Beth) told us that for 6 weeks following surgery, we are not allowed to pick her up using her underarms. We must pick her up by supporting her head and her butt (simultaneously). I guess it puts too much strain on their chest to pick them up by placing each hand under each underam and lifting.

She had been such a good girl about not pulling out her feeding tube, but just in case, I had her in newborn mittens to sleep at night. Tonight, though I didn't put them on. So she has no "No-No's", and no mittens, and no socks on her hands and she's keeping the oxygen and feeding tubes in. Such a good little baby. Yesterday morning I put her on the bed to watch "Yo Gabba Gabba" with big sister Violet:

She is still getting her voice back. I'd say she's 50% there. Sometimes it is very hard to hear her crying, but you know she's upset because she has tears in her eyes. She was smiling playing on the floor yesterday and making the most adorable little noises. I got a few smiles out of her.

Todd said he caught her smiling in her sleep too. She is definitely happy to be home, and so am I. : ) I'm looking forward to spending the next week with her...and hopefully weaning her off the feeding tube. I don't want to go back to work with her still on a feeding tube, that would suck. Right now when I woke up to feed her, she did take 4 ounces, so to me she's back to pre-surgery eating. But we still need the tube for her medications... so she won't puke them up. But she'll be weaned off of two meds by tomorrow, and we'll just be down to Lasix, Colace and Tylenol... and she won't need the tube for that, so we're right on track. I'm not worried about that. I would love for her to also be off oxygen before I go back, but I doubt that will happen. Dr. Lane said it will take a couple weeks to wean her off of that... but maybe on Tuesday Beth will have a different opinion. Heres's keeping my fingers crossed. : )

20-question Melodie

2009-10-23T02:36:00.000-07:00

Sometimes I feel so sorry for Beth (Scarlett's cardiologist). I call her ALL THE TIME. I text message her. I email her. I page her...and every cardiologist visit is usually (at least) an hour long because I take my little black notebook with me full of questions that I've written down in the previous 3 weeks. After Scarlett was born and before her 2nd surgery, I saw Beth *at least* every three weeks. But most of the time I saw her practically every week or every other week, because I am a worry wart...or it was for a Eller Congenital Heart Center Family Council meeting.

Yesterday, I was changing Scarlett's diaper and I started to get worried that she hadn't pooped in 48 hours. So I breifly pause...should I page Beth?... and of course without hesitation I think... Duh... what kind of question is that? of course I'm gonna page her why wouldn't I page her?... So I start writing down my list of questions:
1. Should I be concerned that Scarlett hasn't had a bowel movement in 2 days?
2. She keeps rolling over on her tummy, is that safe?
3. How many days should I wait until I can sponge bathe her? (I know I can't submerse her in water for 6 weeks after surgery, but how long should I wait to sponge bathe her?)
4. Before surgery she was drinking 1-2 ounces per feed, 3 tops, and now she's drinking 1-2 ounces, 3 tops, so it's really nothing different...when can we pull the feeding tube?
5. I've been giving her Colace every 8 hours because she hasn't pooped and she still seems backed up...is that okay even though she's taking all her other medications?

Okay, this time I really only had 5 questions, but just ask Beth... sometimes my little black notebook has no less than 20-25 questions. Hey, I always read that you're supposed to write down your questions and bring them with you do your doctor's appointments so you don't forget. I took those words to heart. I write everything down. ...and I am a naturally inquisitive person. I just want to know.

Last night I gave Scarlett a quasi-bath with some soapy wipes that the hospital sent home with me. My poor little baby had 3 dreadlocks! She was lying on her poor little back for so long that she managed to mat the hair on the back of her head pretty good. I had to take a baby comb and slowly and carefully detangle her matted hair. It's deceivingly long in the back (she has a major comb-over thing going on...). When I took her onesie off to wash/wipe her off, I noticed her chest looks really dry and cracked (red and irritated). So again I page Beth...Is that okay? Can I put Aquaphor on it? So like I said... I feel sorry for Beth.

Bolus Feeding

2009-10-22T04:23:00.000-07:00

Scarlett was sent home on a feeding tube and on oxygen. Her right nostril has two little tubes coming out of it (or going into it?). One is the nasal-gastric [ng] feeding tube and the other is her oxygen nasal cannula.

After her first surgery, she was also sent home on a feeding tube. We had to tube feed her for about 6-7 weeks post-op back in February, March, April. So we (Todd & I) are very familiar with the insertion of ng tubes, and using stethescopes for checking placement. There are two ways you can feed a baby on an ng tube. Bolus feeding or Continuous feedings.

Bolus feeding means that you (the parent) hold a 2 ounce oral syringe and 'hand-pump' the milk into the ng tube at a rate that you think a baby would normally drink a bottle. Continuous feeding means that the child is tethered to a machine (ours was called a kangaroo Joey) that you can electronically program to pump (dispense) milk at a rate you determine ...i.e. 30mls per hour, 35mls per hour, 60mls per hour, etc..

The first time we were sent home on a feeding tube we used the kangaroo Joey (aka 'the pump') to feed Scarlett what she didn't drink by mouth. Meaning, if she was supposed to eat 3 ounces during a feed and she only drank 1 ounce, then we put he other 2 ounces in a bag connected to the pump and turned the pump on., etc. It was kind of pain. We found that Bolus feeds were waaaaaay easier, faster, cleaner and more convenient.

So this time around, we didn't even order the feeding pump from Apria. We're just going to do 100% bolus feeds. We're old pros now, ya know...

I just woke up to pump (hence my 3am-4am blog post time) and to give Scarlett her 3am dose of Avitan (they're weaning her off of it slowly in a 4 day program). I got out my handy dandy yellow stethescope, checked for placement [shoot a puff of air through the ng tube and listen to her tummy for the woosh of air], and then down the tube, I put her meds and 3 ounces of the milk I just pumped. I did offer her a 2 ounce bottle at the same time, but she only drank 1 ounce. Her strength and endurance to eat/drink isn't quite there yet, but I'm not worried, it'll come around eventually.

I just think to myself... this too shall pass. The feeding tube isn't half as bad as the oxygen cannula & tank, because with the feeding tube, I can still move her around wherever I want, but being connected to that gosh darn oxygen tank is a major nuisance. In fact, when we were leaving the hospital, I just pushed Scarlett away in her stroller and completely forgot about the O2 tank and it totally fell over and made a pretty loud noise.... and I was like "D'oh!", I forgot she was tethered to that thing!

I'll end this post by saying that heartmoms whose kiddos are on long-term feeding tubes or oxygen (u know who u are)... Heaven Bless you.

Discharged!

2009-10-21T19:55:00.000-07:00

We *finally* left the hospital 2 hours after my last post....drama with the prescriptions, insurance company, pharmacy...waiting, waiting, waiting...questions about feeds on feeding tube...questions about her oxygen tank..But finally at a quarter to 3, we finally loaded the Jeep and headed home. Well, not really, we headed straight for the pharmacy, and waited for her prescriptions to be filled first... then headed home.

I almost didn't recognize my house. I've been gone for 10 days, seems like forever. Scarlett is adjusting to being home. She's tethered to the oxygen tank... which is a major drag, so we can only take her in the living room where the "big" tank is, or our bedroom where the portable tank is.

I'll post more pics tomorrow, but I am so happy she is home again. We have a follow up appointment with Beth (her cardiologist) on Tuesday. I get to spend the next week at home with her. I return to work on November 2.

Thank you so much to everyone for your countless prayers before, during and after her surgery. :)

Heading Home

2009-10-21T12:30:00.000-07:00

They are getting her discharge papers. We've already been kicked out of our room, and we're in a holding room. Waiting for the pharmacy to fill the prescription which was already faxed. We'll be hitting the road any minute!! :)

Best Day Yet.

2009-10-21T03:38:00.000-07:00

Scarlett had such a great day on Tuesday. : ) As noted in my previous post, we stopped tube feeds at 11:00am and she was able to tolerate her bottle at 2:30pm, then again at 6:00pm. No vomiting! Yaaaaaahoo!

At around 8 or 8:30pm I tried to feed Scarlett again and she didn't seem interested in her bottle at all. I was holding her and she kept wiggling, and arching her back and didn't seem to want to be held...but I didn't want to put her back in her crib either (cabin fever, ya know). She seemed agitated, so me and nurse Rhonda put her in a high chair and let her play for 20 minutes with toys I brought from home.

She kept putting her toys in her mouth and eating her hands (like she was hungry)...

...so I took a chance and opened a jar of baby food (sweet potatoes stage 1) that Todd brought on Saturday. And my adorable little baby shocked me and ate the whole thing!! It took me almost a half hour to get her to eat little bit by little bit, but she polished off the whole jar! : ) again reason to celebrate!! woot woot woot!!!

Wow. What a difference 48 hours makes.... I was even able to dress her for the first time in a week. I put a onesie on her and she looks like a "normal" baby again. (well, normal with oxygen, ng tube and an IV)

I asked nurse Rhonda when she thinks they're gonna let her go home. She's doing so much better now, and can easily be sent home on oxygen, pulse-ox and feeding tube. (which is all she has right now. Her IV drip was turned off last night when she was tolerating her continuous NG tube feeds.). Rhonda said probably in the next day or two... of course this was just her opinion tho.

My little baby had a rough time getting to sleep. She was fighting it and fighting it. She was kind of grunting like she was in pain or straining to make a poopy..(or both?). So we gave her some Tylenol and stool softner and after about 15 more minutes of whimpering, she finally settled down for the night.

I, too, had just laid down to go to sleep right after her... when Rhonda came by and tapped me on the shoulder.. (I had barely fallen asleep minutes before). She said "They're going to let her go home tomorrow... I thought that was worth waking you up" :) and I whispered: "yay!", and I went to sleep with the biggest smile on my face and the happiest I've been in a long time. : )...next post...Discharge! Thank you God for taking care of my precious little baby.

Sock Puppets

2009-10-20T16:13:00.000-07:00

Well, she's had another barf-free morning so far. Around 11am, we turned off the continuous feeds through the feeding tube. She was up to 30ml's per hour and was still barf-free (woo hoo!). So, around 2:30pm, I fed her a bottle and she drank 2 1/2 ounces. She didn't barf, didn't gag, and took her time. It's been almost 2 hours and she seems to be doing fine.We're just waiting to see if she's gonna keep it down for more than 4 hours. That seems to be the record...

I held her for a little while after I fed her, but she got ansy and wiggly so I put her back in her crib and sang songs to her. She rested for a little bit, but now she's gnawing on her right hand. I took off the "No-No" off her right arm and put a sock on her right hand (to stop her from pulling out her oxygen or feeding tube.). Now she has socks on both hands. When she starts moving her arms it looks like she's playing with sock puppets. She's having a good 'ol time eating the sock on her right hand.

Right now she's happy. I actually got a smlie out of her yesterday and today. Her voice is starting to come back little by little, too. It is sooo nice to hear her adorable little coos again. : )

Oh, one last thing, she did make a small poop after they gave her another glycerin suppository this morning, so hopefully that means her bowels are gonna start moving again. All in all, she's having a good day. Way to go baby girl!