The last 2 days have been spent in such a blur, it feels at times like it MUST be a dream, a bad joke, a walk in someone elses shoes for a moment. Certainly this is not OUR life now. But it's not any of that, it is our life, it is our journey it IS our daughter. Our sweet girl we never expected but wanted and loved so much from the day we found out we were expecting her in July 2010.
In November 2010 we found out at our 20 week ultrasound that we were expecting a beautiful healthy little girl. Our sweet girl after our 3 awesome boys. We looked forward to March 27th when she was due. After some very hard months we were finally going to meet her soon. Grace Fenella was born at 12:07 am March 27th 2011 after a very quick, easy delivery. Right away though, I knew she was not ok. She was very purple and they thought it was just because she needed a minute to catch her breath. She came out very very quicklly and sometimes that is a surprise to baby. Our last two boys were like that, but she looked different than they did and I knew she was not ok. They took her from me and to the warmer. She was not improving, though she did start to cry a bit. They whisked her off to the nursery and called the NICU dr from a nearby hospital to come and take a look. I was so scared but never expected it would turn out like it has. I thought maybe she'd need a little oxygen or something but that they'd bring her back to me in a few hours which would suck and be hard but wow not this.
After Grace was there for about an hour Adam came back and said they thought she might not have developed properly and might need a "small surgery". A little while later, I was told she was being transported to a bigger hosptial with a NICU. Within 5 hours of her birth, she was taken from Flower hospital to Toledo Childrens Hospital by ambulance and then to University of Michigan, by Life flight. They told me she had a diaphragmatic hernia. IT sounded bad but I still was not grasping how sick she is.
I was able to leave just after breakfast time and we headed up to Ann Arbor to be with her. We got here and found her and it was just shocking.
Grace has CDH,Congenital Diaphragmatic Hernia. Her Diaphram did not close all the way in utero, which allowed parts of her intestine and liver to sneak through and develop in her chest, where her lungs should be. They came over on the left side, so her left lung is then severely underdeveloped and small.She does have one though which is a good thing. Her right lung is also smaller than that of a healthy baby but not as small as the left.
Grace was placed on a ventilator but was not doing what they had wanted, so the decision was made to place her on ECMO. ECMO is when they take the blood from her body through her carotid artery in her neck, siphon it through a machine to clean it out and back into her body through the jugular. (or vice versa, I cannot remember right now) It is a heart/lung bypass so that she is being kept alive but her heart and lungs are given a rest so she is not working so very hard to pump blood.
She has been responding well to the ECMO and was taken for her first surgery around 12 pm on March 28th. Just 36 hours old and going off to the OR. It was very scary.
The surgery was to close the hole and move the intestines and liver back down where they belong. Grace did WONDERFULLY. She tolerated it well. We were worried because the ECMO thins your blood and surgery with your blood thinned is risky. No bleeding and no complications. Her hole was able to be closed with itself, meanig they did not need to patch it like they thought htye might with Goretex. Her liver was fit bak in place and her intestines though they thought they might be able to get them completely in, they didnt want to risk having to open her up again. So part of her intestines are outside of her body, in a clear plastic bag. They will start to slowly put them back in her body in a few days and then close her belly back up.
It is wonderful that she came through the surgery well, but has such a long long road to recovery ahead of her. There are many many many more hurdles to jump, but we are praying, praying, praying and half the world must be too! I will try to have this updated often so everyone can know. Im hoping to because it is hard to keep up with the texts and phone calls and keep track of who knows what. We have faith that our little girl will be ok, she is in the Lord's hands and has the best in the country working on her for this. She is in great hands on this earth and is being held by the amazing hands of God.