That day!

February 9th was the day that changed everything. What we thought was a little Cyst around the abdomen, turned out to be Congenital Diphragmatic Hernia. The Hernia that baby has consist of the bowels and colon in the left chest cavity, obstructing the left lung from growing. When the words came out of the fetal cares specialist mouth "Im sorry this is not good" all I could do was cry. Though when we saw the cardiologist luckily the heart looked great was just moved over. That was a relief. The rest of the week would consist of an MRI scan where the radiologist went over the findings with us. One of those findings was this was a very chubby baby. I felt bad as my diet did consist of anything from betty crocker bakery - but hey guess thats good baby will already have a good fat content. The fetal care specialist saw us at the end of the week to go over the MRI Findings which weren't horrible but not great either. There are two zones the fatal and stable. We are in the more stable zone. We were so happy with this we asked what the sex of the baby was as Paul and I decided it would be so stressful on the delivery date we wanted to celebrate this baby now. Dr. Magee was excited to tell us it was a girl I was so excted. Paul was shocked in a good way! I bet he was wondering how the heck am I suppose to do girls hair! We both thought surely this was a boy. Dr. Magee said what is her name and I said Matilda. And that is the day that this became Matilda's Fight. I saw my obstatrician the following monday and she was shocked as the hernia did not present itself at the 20 wk scan. They think the hole in the diaphragm was just a little pin prick at that time. As she said I wish I could give you some guarantee we just can't, so little known. But she felt postive we could get through this. We met with the surgeon on Wednesday I was dreading this a little, as we met with a neonatologist last friday who hadnt looked at our MRI and consulted us on general CDH cases. We had gotten great news from Dr. Magee that morning but by the time I saw this neonatologist it was very doom and gloom. Which I do understand as they see so many things in the NICU everyone wants to prepare you. So when we met with the surgeon I was nervous but he was the nicest man - so positive, and really explained why CDH is so difficult on babies. He said they haven't come up with a "rule" on how to treat these babies and you just kind of go with latest techniques as they have all changed throughout the years. He said from the MRI the things he has to repair for Matilda are easy - she has to do the hard part of stabalizing and breathing with help from the nitric oxide they will give her. Some babies do very well and some just never get it. But he was very positive that he can take care of her surgically. He said sometimes just becuase they cant identify the left lung on MRI, he said they pull the bowel down and you see the shiny pink thing that is the lung. Then he started telling us stories from previous experience and I thanked him and he said hey Im always positive its the only way to be. So wednesday was a good day. I met with the fetal care specialist on thursday again it was the other doctor in that practice. When Dr. Magee explained things last week I think I was overwhelmed and didnt really hear him. But she explained again that Matilda since her lung mass avg (right and left lung) was 32.3 cc she had a 75% chance of survival as long as there isnt anything else going on. If the lung is 40cc and over then the baby has a 90% survival rate. Then she looked at everything again and she was pleased that nothing had changed and Matilda looked good. Then she told me that they diagnosed 3 other cases of CDH in patients last week - which she said never happens and is scary! She said two of them were third trimester like mine and the other was late second trimester. The ob gyn dept had a teaching conference on wendnesday and our case was presented as were the other 3. I got some satisfaction as the neonatlogist who was there said that he consulted with one of the mothers "Me" last friday and he wished he had my MRI report and he could have consulted better. The conference was basically teaching the GYN residents how to consult patients with different defects where the outcome of baby is so unknown. So I take a tour of the NICU today which I didn't really want to as it makes me nervous and can't bear to see those sweet poorly babies. But the coordinator from the fetal care center said I really need to go. So we are just getting prepared, I feel so lucky that they found this 3 weeks before Matilda will be here so we are prepared. The Surgeon Dr. Roden said this is great that they found this he said some babies come out and you never know and they cant breath and it delays everything. He said could you imagine meeting me from your hospital bed trying to process this whole thing. We will have my OB deliver Matilda then the Neonatologist team will intubate her right away. And poor girl has to literally fight for her life. We got the name Matilda about 2 months into pregnancy, I looked up her name the other day and it means "strength in battle". And February 26th is game day and we are all ready to see our little girl fight. I will be updating this blog if you want to subscribe. We want to thank everyone for their love and support! Megan, Paul & Freddie