Hello. Sorry about the radio silence.
I figured I would give a little update but I don’t know where to begin. Everything is in contrast. I feel like I’ve lived a million lives since July 4th and yet also like it’s been one long day. My world has shrunken down into a tiny NICU room and at the same time has expanded beyond what I could have previously imagined. The NICU is so much harder than I thought it would be but only because Colette is so much more to me than I thought she could be. This explosion has left me wordless and incapable of processing at the speed in which I'm experiencing things.
But I'll do my best to give a update. The short version is that we had a scheduled C-section for July 6th. In between a pool party and a BBQ on July 4th Trever and I went home to take a nap which lead to a quick check-up at the hospital where I suddenly started contracting. They planned to monitor me overnight and sent Trever home to get our things and in the 30 minutes he was gone I had progressed so far that we were being wheeled into the O.R. just minutes after he returned. At 11:45 on July 4th Colette arrived.
I don’t know how to say what it felt like to hear her cry or see her perfect face. Nobody tells you how utterly terrifying it is to love someone that much. Nobody tells you what it’s like to watch your spouse love someone the same fierce way that you do. Nobody tells you that all your other silly dreams pale to colorless when she arrives. Or maybe they do and I just didn’t have a way to hear it.
As far as a medical update we’re still in the NICU. For the first couple of days they were just monitoring her heart. By the end of the first week she was scheduled for heart surgery. I was at home comatose with grief when the cardiologist called to say surgery was cancelled. They decided to re-evaluate her scans with 6 other cardiologists and when they did the majority of cardiologists thought she would be fine without surgery. So they took her off the medication that would reveal if her heart would be ok and as it turns out, it was. We were also told her pulmonary veins were in the wrong place and a scan revealed they weren’t. Oh and her lungs work great which can be a really big problem with baby’s who have Omphalocele. I would like to say this in a more dramatic way so you can understand the relief it was to have such a miraculous turn of events but I don’t have the words.
Then about a week ago she started getting sick with a fever. They couldn't identify the infection and they had her on antibiotics but nothing was working. They started getting concerned that antibiotics weren't reaching the infection which meant blood wasn't reaching the infection which meant she likely had dead bowel. I was sat down in a conference room with the surgeon who told me he was very worried about Colette. He said he was stuck in a bad place between not operating and having her get more sick from infection which would ultimately claim her life, or to open her up and potentially not be able to close her up because the majority of her bowels are only covered with a thin membrane which is hard to sew up. We opted for surgery and she was in the O.R. within an hour.
Rock bottom is when an anthesthesiologist tells you to kiss your daughter goodbye and you walk out of the pre-op room with nothing to do but wait. One big blur and a few hours later the surgeon came and told us she made it through the surgery and all her bowels were healthy. He was able to re-position her bowels to help with food tolerance and the found the infection which was the omphalocele covering itself and then he was able to close her back up. We walked out the waiting room to find our families waiting for us and we all sobbed and breathed a huge sigh of relief. They started her on new antiobiotics and all of her levels are finally dropping showing the infection is finally going away.
The grace of God has been so apparent that my underserving soul can hardly understand it. And yet I’m asking for more. Our big hurdles are to keep her infection numbers dropping, to get her to drain the fluid she is retaining from surgery, then re-starting feeds which we're hoping we have better luck with post-surgery. Once we're in the clear and she's eating she can come home and we won’t have surgery on her abdomen for quite a while. Prayers welcomed.
We get little updates from friends every once in a while about the amount of people praying for us and just about every day baskets of food, warm meals, tiny dresses and stuffed animals show up at our door. When I get my head above water I'll thank you all individually. But know that every prayer and every act of love and support means so much more to us than we could express. Thank you.