Appreciating Life

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!

 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!

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

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

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

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

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

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

I

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



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

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

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"

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

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

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

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

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

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

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

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.