On Friday, Christopher and I had an appointment with a Perinatologist (an ob specialist caring for the mother and fetus of a high risk pregnancy) through Hutzel Women's Hospital and Wayne State University. When we had our 20 week ultrasound for Isabell, the technologist saw something on her left lung that made the doctors concerned so they wanted a specialist to look closer at her. It was decided that they "believe" she has a CCAM (congenital cystic adenomation malformation) which in human terms is a non cancerous mass on her lung causing the lung tissue to not work like it should. Our new doctor did another ultrasound and she was a dancing machine for him and wanted him to work hard yesterday but he did get some really good shots of her lungs so he could explain to us what they were seeing. It just appeared to us that one side of her lung is bigger than the other and it's pushing her very strong heart out of place, but barely he said. The game plan now is to have yet another ultrasound on Thursday of next week at the hospital but this one will be more in depth and they may also do a MRI to get an even closer look at things and the ultrasounds will continue every week to two weeks from here on out. Our goal is for one of two things: #1 that this will just go away because sometimes it does and they don't know how or why or #2 that it won't grow any bigger so we can just deal with it after she is born. We aren't doing much research on the internet because the stress level and emotions are almost too much to handle at this point so if you are going to ask a millions questions, you will probably get the "we don't know" answer from us. We ARE asking for your prayers for this situation as that is all we can do at this point.
Here are a few questions we have already been able to answer:
- no, it is not genetic, it just happens and they don't know why
- there are different types of CCAM's and we don't know what type this is, yet.
- her lungs ARE working great right now and everything else on her scan's are working properly.
- will she have to have surgery? As long as there is no hydrops (accumulation of fluid in the skin, chest or abdomen) then we will be able to wait until after birth if it grows. If hydrops is detected then we will be sent to either Cincinnati or Children's Hospital of Pennsylvania where they will perform fetal surgery where she will be removed, surgery performed and she will be put back in but that is only if she gets really sick first.
- does this effect Kim? emotionally and mentally . . . without a doubt but the only way this may effect her physically is if hydrops is detected because she will start to show signs of what is known to be preeclampsia.
- will this effect her life, long term? Our Dr. said that as long as they keep an eye on things and they do end up removing it now or after birth, she should live a very normal life.
- how big will they let the mass get? It may grow with Isabell and appear quite large but not cause trouble because she is growing rapidly and there remains enough room for the normal part of the lung to grow. The mass may remain the same size but because she is growing rapidly, the abnormal piece of lung becomes relatively small. It may also shrink in size or even disappear before she is born.
- where will you give birth? If this "thing" goes away then I may be able to deliver at Henry Ford as planned but if there is no change or gets bigger then we will be at Children's Hospital of Michigan which in downtown Detroit due to the massive amount of NICU professionals they have in case they are needed for Isabell.
We are just taking this day by day, week by week and preparing ahead for whatever we may face. I laid on the couch last night and pulled up my shirt and just watched her kick away and couldn't help but laugh, it was amazing! We will try our best to keep everyone posted on what is going on but we never know what tomorrow may bring so please be patient with us as we are learning all over again what patience is.
PLEASE PRAY FOR HEALING AND STRENGTH!