So I am new to this blogging bit, but thought it would be a good way to keep everyone posted in one place. I know that as the weeks progress, and after Jonathan is born, keeping this updated for everyone will be enough of a challenge.
When we were 12 weeks pregnant, our son, Jonathan Louis Moehl was diagnosed with CDH. (Congenital Diaphragmatic Hernia). This can be a life threatening birth defect where the diaghragm does not form properly; a hole is present and in Jonathan's case the left hand side. Therefore, his heart is in the right side of his chest, stomach next, bowl, gallbladder and liver are all present according to the MRI. The ECHO of his heart looks good, but the rest is not good. The best LHR (lung-to-head ratio) that he has had has been around .9. Again, not a good indication.
5 weeks from Wednesday is the tentative date for our baby boy to be born through the procedure of EXIT to ECMO. This is like a c-section, a bit more invasive, and the doctors seem to be optomistic that this will give Jonathan the best chance at a "jump start" to get his little lungs working. The ECMO is like a lung/heart bypass machine that will give his lungs a break from the start. Pulminary hypertension is the real problem with CDH babies.
I am scared for our son, as well as for my family. My husband and daughter are my world, and I am scared as to what this will mean for all of us, but I am trying to stay hopeful and in the understanding that God will lead us. We have prayed like crazy for the last 21 weeks, and I am trying to keep my chin up. The last 5 weeks will be very trying physically (due to the fact that I feel huge ;) ) and emotionally. There is so much that can not be answered until Jonathan is here, and I keep reminding myself that no matter what happens, Jonathan is a gift. The not knowing is very difficult, and because of the prognosis, it is hard to plan. My son does not have much in the fashion of a normal birth. When we were pregnant with our daughter, she had everything one could think of. My son has maybe 5 outfits but I have been unable to do much more. I almost feel that it is better to wait, and when he needs things, it will be like a victory then. I have tried to take the victories that we have had through this journey and celebrate them when they are here and not take anything for granted, but be humbled and thankful for what I am given at that moment; i.e. normal amnio, normal ECHO after ECHO... I am exhausted most of the time. I am so tired of going to the doctor, but I try and remain a trooper. I have an amazing support system, family, husband and daughter, and I know that I could not be more blessed in that aspect. I have read several other families blogs of children born with CDH, and I always walk away feeling better in the fact that I know that I am not alone. I hope this blog can help others in the same manner. I want my family to stay posted, but I also want other parents to know that what they are going through is "normal" and it is hard, and some days are just better than others. We all just have to keep fighting for our babies.
