September 25, 2014 ~
We spent the entire morning in the hospital again.
We met with doctors to have another ultrasound done and to discuss our test results from this last week. On Monday we had our fetal echo done.... it was then that we started to admit to ourselves that things are not looking great for our tiny baby.
The echo took forever. It was in an older part of the hospital that was quiet and isolated. It made me feel very alone and extremely sad for some reason and all I wanted was to get out of there. When I laid on the table and the doctor began to look at the baby's heart I could see it flash up on the screen. A tiny flickering multi colored sign of life. Echo machines use multiple colors to show the flow of blood within the heart and it's vessels and arteries. It truly is a beautiful thing. For some reason seeing this tiny rainbow heart on the screen made me feel a little bit lighter. It gave me hope.
When the fetal echo specialist came in to discuss the results of the echo I knew it wasn't good. The left pulmonary artery that supplies blood flow to the left lung is half of the size it is supposed to be. This indicates that the lung is at least half the size it is supposed to be....
See, the idea behind the CDH surgery is that they move all of the belly organs back down to where they are supposed to be, re-build the diaphragm and hopefully give the lungs room to re-inflate. Unfortunately, the success of the surgery depends on the baby having a full set of lungs to re-inflate.... Our baby does not have this.
We knew right then and there that we would more than likely be saying goodbye to our baby at some point. To say that we are devastated is the understatement of the century. Any hope that we had of our child surviving the massive amount of surgery and intervention it would have to endure went out the window and reality started to set in.
This morning we walked into the clinic knowing that they would tell us not to have our hopes up. We waited an hour and a half before being brought into an ultrasound room. The TV that is used for the parents to watch the ultrasound was broken and I was thankful for that. I can't see it anymore. I can't take seeing how hurt our baby is. I closed my eyes while they looked at the screen carefully. David sat quietly. When the doctor came in he gave us no further answers and insisted we wait to discuss his findings until after we met with the post surgical baby doctor.
We were led to the same room we waited in for hours that first day in the clinic. It's a sad, windowless consult room that makes me anxious. The post surgical doctor came in and awkwardly asked us what questions we had. The first thing I thought was "Aren't you supposed to be giving us information and running us through what to expect? Why do I have to lead this conversation?" She let us know that the prognosis for CDH kids is never really positive and that we had a particularily difficult case. I managed to keep my tears from overcoming me until she started to discuss at what point they would stop with medical intervention and do their best to make our baby comfortable until he or she passes away. That's when everything hit me. This is actually happening.
She left and our doctor came in to discuss further options. He ran us through several scenarios including what will happen if we choose to end this pregnancy early. This is where I started to really lose my composure. We finished our conversation and I told David to take me home. I was tired... I am tired.
Tomorrow is our last meeting. After that we must make a decision. This is the most difficult decision we have ever made.
Mrs. E
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