Recooping

Well it has been 4 days since surgery and Matilda has stayed stable! Which is all we can ask for. I have to give a big shout out to Dr. Ryan Smith who did Matildas anaesthesia. He is my friend Julie's brother and Dr. Kamilya Smith husband(partners with my ob gyn). So it definately was a family affair. He was so sweet and helpful even calling us the night before to go over everything. This made surgery day a little bit more manageable as we knew she was in good hands. Also Dr. Roden who did her surgery......which he jokingly called boring. I said hey we like boring! I also have to think the NICU nurses who are cut from a different cloth. They are beyond amazing and really advocate for our little Matilda and have been so supportive to us. As well the neonatologist are amazing. Calming my nerves as this has been such a rollercoaster............which I never ride rollercoaster........so has been tough.
So a lot of people have asked, "where do we go from here", "how long till she can leave", "when can she come off ventilator?" To which the answer to all of these questions is we don't know. Every CDH baby is different. There is no time line. We are on Matildas time line. As well there are so many other components that could go wrong that we have to watch for. As the docs have said the recoop time can vary from weeks to months. Which I always say "hey we like you all so we are under your direction!"
We tell them that we have prepared ourselves to be here for months. Everyday Paul and I feel so lucky that we found this and had three weeks to prepare. On Wednesday we saw what could have happened if they hadn't found it. A baby came into the NICU and they didn't know what was wrong with baby till they did x-ray to confirm it was in fact CDH. We saw the parents later that afternoon and they looked like how we did almost a Month ago. Paul and I felt for them so much! Later that night they were moving that sweet baby to children's and the dad was just sitting there a bag of nerves. It was really ironic to the left of us is this sweet baby they are trying to get stable to transfer her. And then the doc in front of us saying how pleased they are with Matildas progress. Was a really weird day as we thought that could of been us.
So the docs are pleased with her progress so far. They said she is headed in the right direction. So we will take that, though we literally still take things day by day as we are aware things can change so fast. She is such a little fighter we are so proud of her. Last night Matilda was very awake. She currently is being treated for jaundice so her eyes are covered the whole time. They were doing her vitals and took her eye protector off and Paul started talking and she opened her eyes and looked at us. So think she is already a daddy's girl.
We appreciate everyone's support so much. Please keep those thoughts and prayers coming! I will update next week!
Love to you all!
The Crowes