Way before Eric and I even begun our journey to parenthood, his doctors told us when we did became pregnant we would need to have a heart echo on the baby to check for any congenital heart defects due to Eric’s condition.
In November, we went to a cardiologist that basically performed a normal ultrasound, just zoomed in really far into their hearts. When the doctor started the ultrasound, we saw Parker first (he was really good at showing off his boy parts during visits LOL) and thought that we were looking at his heart… but the handheld thing they use during ultrasounds (I have no idea what that things is called) was really low… which Hannah was always the bottom baby… so instead of being concerned about their hearts, I was freaking out for about 10 minutes that our ultrasound a few weeks back was wrong and we were actually have two boys!! HAHA, all I could think about was telling everyone the next day at our baby shower that anything they bought for a girl was going to have to be returned. Come to find out, we were really looking at Hannah, but the babies had moved the same time the doctor moved so we all got confused who was who for a little bit!
When I was able to go back to focusing on the real reason why we were there, the cardiologist said he couldn’t see Hannah’s heart very well due to her position, so he couldn’t confirm or deny that there could be a tiny hole between two of the ventricles. To be on the safe side, he asked that we come back in a month to take another look since they would be bigger and would hopefully be able to see more.
During our appointment in December, Hannah still wasn’t in a great position (go figure), but he was able to confirm she did have two tiny, tiny holes. He explained that she has what’s called Atrioventricular Canal Defect (aka A/V Canal or A/V Septal Defect).
A / V Canal Defect
A / V Canal Repair
A/V Canal is a hole in the center of the heart. It exists where the wall between the upper chambers join the wall between the lower chambers. Also, the tricuspid and mitral valves that normally separate the heart’s upper and lower chambers aren’t formed as individual valves. Instead, a single valve forms that crosses the defect.
Normally with this condition, blood would be able to pass into either side of the valves, which would cause extra blood to be sent back to the lungs, making the lungs work harder to pump the extra blood out, thus causing high blood pressure and damage to the blood vessels. In Hannah’s case, the holes are small and it doesn’t appear right now that there is any blood crossing between the valves – yay!! We’re very lucky to have this information ahead of time since she hasn’t shown any signs of this condition and it could very easily go undetected. BTW – the pictures above show a complete A/V canal defect and Hannah’s is not this severe.
Immediately after Hannah was born, doctors in the NICU did an ultrasound on her heart now that they could get a better view. They confirmed that she had two small holes (and really, they act like they’re smaller than what they categorize as “small”) and that it’s not any worse than we suspected. Unfortunately, due to the location of the holes, while the heart might still try to close them on its own, it’s not possible for it to heal itself and will require surgery. Thankfully she’s doing well and they’ll wait until she is at least 11lbs. before trying to do any repairs… which could be 6-8 months down the road. Granted, it is infant heart surgery, but it’s very fixable. That’s not to say I won’t be a nervous wreck the day of the surgery!! There is a possibility that she could require surgery before she reaches 11lbs if her condition were to get worse to allow her time to grow.
One other thing the cardiologist warned us about before she was born was the possibility of having Down Syndrome. Of course Eric and I knew that could be possibility anyways, even for Parker, but they see about 50% of those with Down Syndrome have this condition. Once Hannah made her debut, just by appearance alone, we knew she didn’t, but due to her gestational age, doctors wanted to check her chromosomes since signs of Down Syndrome could still appear later. Tests came back on Tuesday, the 10th, and everything was normal!
Today, at just a week and a half old, she’s doing fantastic! I’ve talked before about how feedings can be a challenge for preemies, let along preemies with a congenital heart defect. I guess since Parker stole all of her food for the last couple of weeks in-utero, she’s taking all the food she can get!! So far, she’s tolerated all of her feedings. For her, she’s worked up to a full feedings (all of 24mL, just under 1 ounce) since doctors are limiting her fluids to make sure it doesn’t get into her lungs, which is why she’s also on high-calorie formula to help her bulk up. It’s amazing that she hasn’t lost any weight since birth!
Babies also start showing signs high blood pressure in the lungs at about 2 weeks old. While she was doing well with her breathing, when we tried to take her off of her nose tubes for a couple of days, Hannah was having to work harder to breathe. This could mean she has fluid in her lungs (causing the high blood pressure) or that her body is not mature enough yet, so back on the nose tubes for a few more days. Within minutes of putting them back on, her breathing rate came down, so hopefully it just means she’s not mature enough yet to moderate her breathing. Again, the nose tubes aren’t breathing for her, they’re just supplying air flow to help keep her lungs inflated… that’s if she can keep them in her nose! She’s really good putting them in her mouth, which makes her look like she has fangs!! If her breathing rate be because she has fluid in her lungs, they would do an x-ray to double check and possibly give her a water pill to help her flush out everything.
We’ll certainly keep everyone posted as she gets bigger – hopefully there’s nothing to report for a couple of months!
hpgreen 