As most everyone knows, our unborn son was diagnosed on 08/27/07 with Congenital Diaphragmatic Hernia (CDH). We have decided to use this blog to keep everyone updated and informed on his prognosis. You will also find links to further information about CDH and the potential complications since it is a widely unknown birth defect.
As we have already been given a very grim prognosis by the medical community, we intend to use this site to glorify God by sharing the goodness that he shows us during this very dark valley. In some way, sharing gives me a sense of purpose in this and also serves as a reminder to me when things look really bleak how big God is and how faithful he has been to answer my prayers and meet my needs in the past.
Just for some background info- we met with a doctor in Charlotte after finding out about the baby's condition. The diagnosis and prognosis we received there was extremely grim and barely informative. So far, those were our darkest times (I'll share more from my prayer journal regarding this a bit later). Then we went to Philadelphia to the Children's Hospital (CHOP). While the dianosis wasn't much better, it was some better and we felt really assured about the information they were giving us. The test results seemed really conclusive.
Because the baby's condition was so severe and our potential hospital stay is likely to be lengthy, they refered us to Chapel Hill to meet with a ped. surgeon there who had been at CHOP for 10 years (Dr. Daniel Von Allmen- please keep him in your prayers). We met with him and felt really comfortable with him and the hospital team and their practices. So, in January (assuming I'll make it to full term- another prayer)I'll be delivering in Chapel Hill.
We have been back to Chapel Hill one other time and are scheduled for another visit on 12/05/07 with high risk OB. The last visit wasn't our best day. The radiologist really pushed the amnio test again which I have refused to have. I just have a really bad feeling about the risks associated with the amnio? The tests would show any chromosome abnormalities that may exists. In the event that the baby has both the CDH and a chromosome problem, his chances for survival will be very slim to put it mildly- I believe the doctor's termed it "incompatible with life". They said it would be better to know ahead of time and we could meet with the Neonatal Hospice....that didn't seem like such an added benefit to us so we're just trusting in the Lord and allowing Him to carry us through this. I just feel like we have made the best medical decisions possible considering the situation and at this point I am willing to surrender and hand this whole thing over into the hands of the Almighty.
When I was first diagnosed in Shelby, I was by myself since we weren't going to find out the baby's sex. I told Travis just to stay at work because it would be completely uneventful....seems almost comical now. Anyway, when they gave me the diagnosis, I knew immediately that God was asking me to trust Him with that which most valued..my children. All through this process so far, when I come to places where I feel completely overwhelmed and without hope, God comes to me again and again saying, "are you going to trust me". When it comes right down to it and you know that the Lord of the universe is speaking to you, you have to trust Him....I mean completely lay it all in His hands.
I know this entry has been really scattered. There is much more I can share and intend to. It was just a bit difficult to cram the two busiest and most spiritually enriching months of my life into a single blog entry. I'll get everyone caught up and answer any questions I receive as I muddle my way through this. I do want to thank everyone for their thoughts, prayers, cards and concern. It has meant so much to us! We are really hoping to settle on a name in the very near future so you can pray for him by name?
Betsy, Trav & Jack