Amniocentesis Results 12/30/10

We finally got the call today. Everything came back normal on the amniocentesis test results. This is great because if she has no other complications besides her CDH, her chances for survival are increased greatly. Woo hoo! The other part of the call was to let us know that our care is being transferred to the hospitalist OB's at Sacred Heart since they specialize in transfer of care and we will soon be needing referrals to the hospitals with level IV NICU departments.

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.

Diagnosis 12/21/10

On December 20th we had our mid-pregnancy ultrasound. It was very exciting to get to see our baby so well developed and squirming around on that big screen. The sonographer lead us through most of the measurements and angles that she was looking over. She told us that we had a little girl. I noticed that she was taking extra care to photograph parts of her chest, but thought nothing too much of it since this was my first pregnancy. I figured that the anatomy in there always needed a close look since it is so vital. She asked when we would be visiting again with the doctor. Our monthly check-up followed the ultrasound the following day. She printed us some pictures and we went out for a celebratory/early anniversary lunch and called everyone to tell them the news of our little girl. My mom picked me up and we did a little early shopping for some little girlie outfits. Everyone was so excited through to the following morning.

My doctors appointment was at 10 am. Steve decided not to attend this appointment since we figured they would simply be checking my weight and blood pressure and asking how I was feeling. This is the first appointment Steve had missed which is great considering his rough grave-yard freight throwing job. The appointment the day before was the one he did not want to miss and of course he didn't. I went in and it seemed like any other appointment. They checked my weight, took my blood pressure, and the doctor came in to chat. She asked how I have been feeling just as usual. She then pulled out the ultrasound information for us to go over. "We found an anomaly on your ultrasound." At this point I was not too scared, but mildly concerned. "It is very serious." Here is where I lost it. The tears started flowing. "Your little girl has a hole in her diaphragm that has allowed her stomach to move up and prevent her from having normal lung development." I asked as many questions as I could between bouts of sobbing. "I can no longer be your doctor. We are referring you to a specialist at Sacred Heart for a closer look." She was as caring and positive with her heartbreaking information as she could possibly be.

I raced home to tell Steve the news and we laid in bed distraught waiting for the phone call from Sacred Heart. They called and had me scheduled for the entire following day to see counselors, the perinatologist ( high-risk OB), and a neonatal doctor. My mom came over to comfort me and we picked up some Noodles Express for dinner to try and keep depression away. I did not sleep at all that night and a long day was to begin at 8am.

About CDH

Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births. The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth. Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual as they arrive in this world.

Welcome Friends and Family

We have created this blog to keep everyone updated on Allison as we battle our way through the journey of her pregnancy, birth, and first days.