Some good, Some bad

Originally posted January 17, 2009

David and I had our latest visit with the fetal cardiac specialist, Dr. Kao, yesterday. This was the first doctor's appointment in a month where I haven't cried afterword for one reason or another.
First the good news: Dr. Kao was very encouraged to see that the baby is doing so well. Yes, his heart is enlarged, but the fluid level around his heart is not increasing. The baby is growing and tracking well and reaching his fetal milestones in every other area. He is currently showing no signs of distress due to his heart problems, and I am feeling him move multiple times daily. Sometimes I think I have a kick boxer living in my tummy. Also, we had several tests done to check for chromosomal abnormalities in my system to see if I'm a carrier for things like Down's syndrome, Cystic fibrosis, and a rarer abnormality called DiGeorge syndrome that causes it's carriers to be more likely to have congenital heart defects (I had one, and now my son has one). The good news is that 3 of the 5 tests they have run have come back with negative results (not a carrier), so there is a minuscule chance that our baby will be born with these chromosomal defects. Praise God! Still waiting for results on the last 2.
So the bad news: Dr. Kao said she can understand why Dr. Wallace gave us such a pessimistic prognosis last Monday. She said the baby's heart is very, very enlarged. So much so, that his heart may start hampering the development of his lungs, if it hasn't already. So we eagerly await Feb. 3 when I meet with the maternal fetal specialist (NOT Dr. Wallace this time) to see how his lungs are doing. Dr. Kao says that even a healthy baby has a slim chance of living if delivered between 20 and 26 weeks or so. She told us that the baby really has no chance of living unless he is delivered after 28 weeks. I was 22 yesterday, so we have at least 6 to go. The bad news about this is that if the little one does fall into distress between now and 28 weeks, there is pretty much nothing that can be done - he doesn't have a chance either way. So we really need to pray that he makes it to 28 weeks. 30, 31, 32 would definitely be better. As far as our options after he is born, we are looking at 3 of them, all depending on how his lungs are functioning. First, if his lungs are doing well, they may decide to wait and see if medication will fix the problem. They can use medication to keep one of the pipes open to receive oxygen for his blood. If his lungs are not doing well, depending on the severity of his condition they may decide either to do the series of three surgeries we discussed earlier, or they may decide to do a total heart transplant. If the three surgeries are the option we choose, the first one will take place within 24 hours after he is born. All good information to have. Dr. Kao told me that the more I can rest, the better. She didn't go so far as to prescribe bed rest, but I got the point. I'm actually a little relieved to have SOMETHING that I can actively do to try and help my baby survive. So I'll be taking it easy from now on.
So the things David and I are praying for include: that God reduces the swelling in his heart, and continues to disallow fluid to build up around his heart, to keep his heart beating for another 6 weeks, to allow his lungs to develop normally, and for God to prepare and send us a new OB doc to deliver this special child because the phenomenal OB that I love won't be able to deliver me at the hospital where he can receive the best care, and that God will prepare a special surgeon at Medical City hospital just for this baby so that I can deliver him at the same hospital where he will be treated for his heart condition.
Thank you for your continued prayers. THEY ARE WORKING. Also pray that David and I continue to have the strength and the patience to wait out the next 6 weeks. Blessings to all of you.
Thanks again,

Rachael and David