Long Day at Sacred Heart 12/22/10

Our first stop was to see a counselor in the genetics department. We were unsure exactly what would happen here but we showed up, filled in the paperwork, and waited to be called back. My parents came with us to help with the driving and act as a second pair of ears when we needed them. They called all four of us back to a room with a big round table and appropriate seating. A few minutes later the counselor came in. We were still somewhat unsure about what we were doing here. The session was simply for her to break the bad news to us again, though she had a much grimmer tone to her conversation. "We looked over your case and we don't have high hopes for your little girl. Are you certain you want to continue this pregnancy? You should consider allowing her for autopsy after birth." This session upset me very much! I was angry that they scheduled this appointment first...or even at all. The specialists had not even taken a look and this lady did not seem to know much about Alli's condition. I felt like I knew more then she did from simply looking at things online in the short time between appointments.

We moved on to our next appointment and I sobbed through the hallways to get there. First up was another ultrasound. This time with a higher-tech machine. They took even more pictures this time that seemed much more detailed. The sonographer was very friendly, and used to dealing with pregnancies that involve complications being that she works in the perinatology department. Alli wanted to stay tucked away from the poking and prodding of the ultrasound wand so they had to tilt my seat way back to bring her higher up in the uterus. Although it was super fun to get to see her again, and in such detail, it was hard to enjoy this one as much as the first.

The doctor came in to introduce himself and ask me what I already knew about Alli's case. I explained the parts that I understood. He offered for us to come back into his office to further discuss the ultrasounds. Immediately he started discussing our options for treatment. This is the information we were truly looking to receive. He talked about ECMO, a lung bypass often used in CDH cases. He discussed the requirement for immediate surgery to repair the hole and replace organs. He even looked into an experimental inutero surgery that is being preformed at a university in San Francisco. Finally receiving more information that would prepare us for our situation really helped put the crying to a halt. He sent us to the NICU (neonatal intensive care unit) where we could discuss our case with the neonatal doctor. She told us about a case of CDH that she witnessed recently there and how well that little girl did. She also told us that depending on our learnings about the severity of our case we may want to be at a hospital that can provide ECMO support and that SH is not one of those. She suggested that we may want to look into some hospitals in the Seattle area.

We returned to the perinatologists office where he offered us the chance to run an amniocentesis test since there is a chance that this complication comes along with some other detectable defects. We decided it would be a good idea to learn as much as we could about Alli's condition and went ahead with the test. They stabbed a big scary needle down through my abdomen into her amniotic fluid to take samples. The sonographer was there to keep an eye on where baby was at to be sure she was not affected. After insertion the needle is removed to leave only a little straw that pulls the fluid out so if baby moves she is not poked. Alli somehow discovered the little straw and attempted to play with it while they were extracting fluid. It was the cutest thing we had ever seen! If I was not in pain from the stabbing, this site would have excited more, but it was still amazing. They gave us a list of directions to follow that involved a day of bed-rest after this procedure. We made our appointments to come back in two weeks and finally headed home.

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