Sunday, January 25, 2009

The baby who never stops

We really enjoyed the 3D ultrasound. It was amazing to see the baby's face and his feet and hands. The pictures aren't as clear as we'd hoped, but then again, we already knew we had an extremely squirmy child. His arms and legs were moving constantly. I wonder what our life is going to be like in 9 more weeks? 

Wednesday, January 21, 2009

Week 30 updates

Things are going well with us. We've officially moved all of our care to the specialists, so we'll no longer be seeing the regular OBs who have been like our therapists these past few months. Both the specialists and our regular OBs had suggested we do this since we first found out something was wrong, but I kept saying no. We needed to stay positive, and our regular doctors were sensitive and understanding. They let us talk and worry and cry. 

At our last appointment with the cardiologist and the specialist, it was clear to CJay and me that it was time to make the transition; we know now that we have no choice where we'll deliver. We need to be at the University of Virginia hospital. Fortunately, we had the opportunity to meet with a neonatologist who answered all our questions as we walked the floors of the PICU, NICU, and labor and delivery. He mapped out possible scenarios and loaded us with information. It was just what we needed. In November, we left the hospital with little knowledge of what would happen after the baby was born - who would take him? would we see him? could we hold him? We still don't like some of the answers, but at least we have a better idea of what we'll be facing. CJay and I can handle it (with God's grace, of course).  

In more "normal" baby news, we've registered at Target and Babies R Us. Our nursery furniture will be delivered tomorrow - boxed up in a million tiny pieces, just for CJay's enjoyment. We haven't painted the room yet, but it's on the ever-growing to-do list. (The clock is ticking and it's getting louder.) AND we have an appointment this Friday for a 3D ultrasound! We're hoping the baby cooperates so we can have some clear pictures of his face. I can't wait to see how much more hair he's grown in the past couple weeks. I think we counted 6 or 7 little sprigs at the last ultrasound. Very cute. I'll post the 3D pictures as soon as possible. 

* For those of you who don't know, we have picked a name for Baby Roberts, but we're not telling. :)

Thursday, January 8, 2009

What we know now

We have a squirmy child. The people in the cardiology department remembered us from our last visit 2 months ago. We're the ones who have one of the most active babies they've ever seen. I'm not sure if we're supposed to be proud or embarrassed. Even though Baby Roberts was still extremely active this visit (including a bout of the hiccups), the cardiologist was able to identify his heart defect. It's called an atrioventricular canal defect. The doctor said it can be a complex defect, but fortunately, we're looking at something less complicated. In November, the cardiologist thought the baby had a chamber that was too small. That would mean he would need surgery to make his heart work with 3 chambers rather than 4. That was bad and complicated. He mentioned that it's rare to see a chamber get bigger over time. Once it's small, it stays small. But here we are 2 months later, and all 4 chambers are the right size. What will need to be repaired is the wall between the chambers. The wall isn't complete and that creates a large hole in the heart. This wall keeps oxygen-rich blood from mixing with the oxygen-poor blood. This type of defect must be repaired in the first year of life - usually before 6 months. 

Right now the doctors can't tell us exactly when the baby will need surgery. The timing will depend on how well the baby eats and if he gains weight after he's born. (It's hard for babies with heart problems to eat because eating is a workout and it puts a strain on their hearts.) We still can't rule out a chromosomal abnormality, but the prenatal specialist didn't see any other problems during the ultrasound. Even though the AV canal defect is common in babies with Downs Syndrome, the doctors haven't identified any other markers that could indicate Downs. 

We know now that the baby will be taken to the NICU right after he's born. From there, the doctors will monitor him and determine when he'll need surgery. The longer he can wait, the better. 

We have another ultrasound scheduled for February 4. We'll also be having another echo sometime in February. The cardiologist said that things can change. I'm not sure how much can change or if anything will, but we're still praying for a perfectly formed little heart come March 30.  

Monday, January 5, 2009

If you don't mind...

We're going back to the specialist on Wednesday. We're having an ultrasound at 9:30 followed by another echocardiogram at 11:30. The cardiologist should be able to tell us more about what exactly is wrong with the baby's heart and what type of surgery he'll need. And we should be able to see if there are other "markers" for any genetic conditions. 

CJay and I have really enjoyed these past 2 months without the visits to the specialist. It's been so nice to have what feels like a "normal" pregnancy - baby kicks, a growing belly, talks of cribs and diapers. I'm trying not to focus on what Wednesday will bring, but I have to prepare emotionally. It's like padding up for a football game. It's too risky not to be ready for that physical and emotional blow. 

So if you don't mind... please pray for us and baby Roberts. We're gonna need it.