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.