This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Thursday, December 9, 2010


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”.


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.


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.


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.