June 04, 2016

A Whole New Baby

Nothing much has changed since my last update - and that's actually a really good thing!

As we officially enter the month of June, I'm swelling with pride for my little man. I keep thinking back to a month ago when we didn't know what was going to happen with him. He was in such an unstable state. The slightest movement would send him into an emotional frenzy. Every 3 hours they had to give him extra sedatives on top of his scheduled medicine just to keep him comfortable and happy. And he was rescued on that high frequency ventilator on very high pressures.

He had become known as a highly unstable child around the NICU and nurses were nervous to take him. At this point is when we had our last care conference and told doctors to do everything needed to keep him going until the end of May.

The first part of the month I was feeling so discouraged and helpless. I had nightmares of Aiden's funeral and was desperate for some hope. At times I truly felt like I was going to lose him and my faith was dwindling. I prayed nonstop for some signs and answers that we were doing the right thing. As May continued, and as you can see from my previous posts, my prayers were answered. And my big, strong boy has made strides in the past month.

We told the doctors to give him the month of May to see what he does, and look at us now! We are starting off June with a completely different baby!

Time to be weighed! They only weigh Aiden when I am there because I'm one of the few people that
know how to put on his c-collar properly. But the benefit to that is they will always bring him
off the scale and right into my arms for some cuddle time!

We haven't necessarily made any leaps and bounds medically, and honestly I wouldn't expect that. But he is in a very stable place ever since we switched his ventilator to conventional air. His needed pressures are relatively low. His CO2 levels have been in a very good range and oxygen needs in the low 30's. This tells us his lungs are working well with pushing the oxygen in and CO2 out, and that his pulmonary hypertension is starting to heal. They have been continually weaning him off of his sedation, and he hasn't even seemed to notice. He is able to tolerate being handled much better, and can be soothed when he gets upset. And it even seems like we got his food intake under control. He's growing at a good pace, starting to make his own curve on the growth charts, and he's not getting overloaded with extra fluid. (In fact after some pushing on our end, they started using the growth chart for achondroplasia (most common type of dwarfism) for him. He's in the 1st percentile on that chart, but it has given them a base line for a curve to start to form for him.) And he's learned that his c-collar is a good thing as well, and only gives us some raised eyebrows as we put it on him.

That's a lot of big steps for him to make in one month. I feel like I finally have a happy, normal, functioning baby - as much as he can be.

The next steps for him will be a tracheostomy. And, of course, there has been a debate in the NICU as to when we should do that. Some people think we should wait a few weeks and see if he needs to be trached after all. Other people argue that we all know traching will need to happen, so what are we really waiting around for? His medical team has decided to give him a few more weeks and then reassess. Those wanting to trach has pointed out that he will need higher amounts of support as he recovers from surgery, so they want him to grow a little more so that he has the room to go up as recovery happens.

After those few weeks, I am going to do my best to push for a trach to happen. It's been interesting, as I've told people about his pending tracheostomy, I've received a resounding "Awe, that's too bad...". I know everyone means well, a trach isn't necessarily the best news, but I actually think of it as some of the best news I've received! A month ago we were talking about letting him go, now we are talking about a procedure that is going to get him home. And until he gets home, he can be a normal baby. He can be picked up, moved around, put into bouncers, and put on the floor with toys. He can finally be held by his sisters and other family members. He can thrive and flourish! I feel so anxious for his trach to be placed. I want to walk in there and say, "Just do it already!".

So at this point we need to keep praying that he will continue to grow, thrive, and get those lungs stronger. He needs to get to lower pressures and support on the ventilator so that he can be trached and get home. I envision we will be at the hospital for six more months. But at least there seems to be a positive end in sight!

Rocked to sleep in mommy's arms - the best place to be!

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