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.

Wednesday, May 19, 2010

Leaky Valve : (

Well, the cardiologist appointment last week had good news and bad news. But for me, it was more like bad news and more bad news. The “good” news is that she gained weight. She now weighs 17 pounds 2 ounces. According to the cardiologist office, she gained 1 lb 3oz since her last visit. She is still in the zero percentile for growth, so I was still disappointed. The cardiologist said she was pleased with her weight gain, because at least she is gaining.
She tried to make me feel better by saying Scarlett went from the negative 5th percentile to the negative 3rd percentile. I just wish she was on the growth chart again. I was not happy about her weight gain, because when I took her for her 1 year check up, she weighed 17 pounds. So, to me she only gained 2 ounces in 2 months. But maybe I’m mistaken. : (

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

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

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

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

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

Wednesday, May 12, 2010

Growing Up

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

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

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

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