We had our most recent appointment last Wednesday, March 19. I’ll start with the positive news. First, John is growing great and is in the 48th percentile, right where he should be! He is 4 lbs, 12oz of cuteness (see most recent ultrasound pic below 🙂 ). Second, our biggest prayer request for this appointment was answered: nothing has changed with his heart or his diagnosis. His aorta is still looking strong and healthy, which is one thing the doctors keep pointing to as encouraging news.
However, this appointment was very hard for Andrew and me because we learned about some new concerns that we either never heard before or had heard but not processed (the brain can only handle so much information at one time). Since UVA is a teaching hospital, they have different clinics throughout the week. We’re grateful for this because we have many sets of eyes looking at our little boy’s heart but different doctors bring with them different communication styles. For this appointment, we met with a pediatric cardiologist from Richmond. He was nice but very direct.
He explained how very different John’s heart is. I won’t go into too much detail but the Double Outlet Right Ventricle (DORV) diagnosis with his HLHS is rare. I had thought that the two usually go together. Because he has both major arteries (the aorta and the pulmonary) coming off of the right side of his heart, this causes extra stress on the right ventricle. Sadly, God did not design this ventricle to do all the hard work. This means that there is a greater chance of his heart developing a leaky AV valve. I’m not sure what the long term complications of this would be but the doctor said this is something that will always be a possibility and we’ll have to watch it throughout his life.
Another piece of information we learned is that many CHD (Congenital Heart Defect) babies, and especially single ventricle babies, like John, are at a higher risk for developmental and learning delays. We met with the head Neonatologist and he said that the benefits of having so many heart surgeries early in a child’s life now outweigh the risks (because they are usually successful) but there are definite risks. John’s brain may not get the oxygen it needs for a time during surgery and that may have long term effects. This was very hard for Andrew and me to hear.
We also toured the NICU and the PICU. As you can imagine, it was very emotional, especially for a tender-hearted, pregnant momma. We saw many tiny, helpless, sweet babies and machines, wires and monitors. It was a lot to take in and even more when I consider that our baby will soon be one of them.
One of the doctors we’ve been seeing called me the following day and told me that I only need to come back for one more fetal echo in April but no other appointments since John is growing so well! He also said they are now going to induce delivery at 7:30pm on Wednesday, April 30. Hopefully, I will labor overnight and our little boy will be born on May 1. This is great timing (unless he comes on his own, which is always a possibility) because Andrew will only need to miss one day of class. Johnny will have his surgery within 3-10 days after birth.
I’m going to start listing specific prayer requests at the end of my posts in case you would like to pray for some our particular concerns. Hopefully we’ll be able to see how the Lord answers these over time. Thanks for reading and praying. We are grateful for you!
Please pray that:
– John’s AV valve would not leak, now in utero, or ever.
– He would not have any significant mental or learning disabilities and if he does, that we’ll be able to help him and get him all the support he needs.
-I would not go into labor before my scheduled induction. He would be best taken care of if he is born as close to 40 weeks as possible and at UVA where he can be seen immediately by the team who is familiar with his case.
-For patience and flexibility for Katie and Ben. This is going to be a big change in their little lives.
-For peace, rest, and trust in the Lord’s goodness and sovereignty as we get closer to delivery.