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October 11, 2016

My Boy Is Back



It has taken quite a bit of time, but my little monster man is finally back to me. Fully, and completely.

I don't know if I adequately described how scary this bought of sickness was, or the miracles we have once again received. Even my mind has a hard time wrapping around it. His medical team told us he was more sick than when he was first born during that week. And medically speaking, when you look at all the numbers, he shouldn't have survived it. And if he did survive it, he certainly shouldn't have come back completely as himself.

I remember them telling us to be prepared for brain damage of some kind. Explained to us that an infection that bad could have affected any number of areas of his brain. They did his MRI expecting to tell us what areas were affected and what that could mean for him. When his MRI came back normal - they were flabbergasted. NP's and Neonatologists still come by and tell us they can't believe it. Medically and logically thinking, that shouldn't have happened.

I saw in the news the other day a story about a 5 year old girl that contracted an infection very similar to Aiden, and passed away from it. When I saw that story, it hit me pretty hard. I felt a deep sorrow for her family, knowing a large glimpse of what they went through and the terror they experienced. It broke my heart, and further drove home the unwavering stream of miracles and blessings we've been receiving. It's a very humbling place to be in.

We were so lucky Aiden was already in the hospital when it happened. His amazing nurses that acted quickly to help him is a large part as to why he came out of this. If something like this happened at home, I'd be posting a very different blog post right now. But on the flip side to that, the biggest reason this happened is because he is in the hospital. It's very much a double-edged sword you don't want to be close to. And I'm so tired of being close to it.

I'm so done with the NICU, done driving there and back each day, done seeing my baby for only a few hours. And he's done with it too. It's time for him to come home. I just know in my heart that if he were here, he would be doing so much better. Not that he isn't well taken care of there - but he wants and needs his family. And we need him. Nearly 7 months in the NICU is way too long. I'd give anything to have my baby with me all the time. Anything. And I've reached a breaking point of not having him with me. He has started to get upset each day as we leave. He'll even reach his arms out to me and start to cry as I put him back in bed and say goodbye. To make him experience that isn't fair. And I don't know how much longer I can handle that each day myself.

We have another care conference later this week to hash out a respiratory plan to get him on the home vent. And I'm nervous for that. I'm realistic enough to realize we have a ways to go still. But there are a lot of uncertainties and things the hospital is trying to push on us that David and I don't want to happen. It's going to be a doozy of a care conference. I know we've received many miracles already, but we are going to need our biggest miracle yet to get out of the hospital.

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