Unreal

Let’s reassess where Jackson is, as we close out Day 24 in the NICU.

When he was admitted, we knew he had:

One non-functioning kidney
— A large VSD in his heart
— A small hand
— An abdominal hernia

At the time, he was breathing fast, much too fast for a normal newborn. Between 70-100s. His oxygen was low.

Now, 24 days later, he is still breathing too fast, between 40-90s. His oxygen is up. We know that he now has:

— A partial or immature 7th nerve
— VACTERL
— Some sort of immaturity in his swallow

That last bullet is new, so let me fill everyone in. After I argued with yet ANOTHER cardiologist about why we couldn’t book him for surgery, I was told that kids with VSD’s, even large ones, don’t show signs this early; that there has to be another reason for his breathing.

Um, what?!

We have been here for three weeks, and all we have heard the whole time is how this massive hole in his tiny heart is causing all the problems, and as soon as we close it up, his breathing will get better. Now, all of a sudden, patching the hole is not going to help?!

His neonatologist suggests doing a swallow study to see if perhaps he is silently aspirating his food. If he is, that could be accumulating in his lungs, causing inflammation, infection, AND fast breathing.

It’s like a friggin’ asteroid just hit earth out of nowhere. Why didn’t we check this out three weeks ago?!

So, they put a rush on him, and take him to do a swallow study, which consists of him sucking on a bottle full of Barium, with contrast dye, and a radiologist taking moving X-ray’s of his swallow, where you can CLEARLY see him inhale some of the liquid into his lungs, as well as force some of it up his nose. The flaps that are supposed to protect those airways are not working correctly.

I am silently screaming, while he silently aspirates. So many profanities are dying to leave my mouth.

Is it because of his nerve paralysis? Possibly. Is it because his swallow function just needs to mature? Possibly. At any rate, right now it is inherently dangerous for him to feed by mouth.

His doctor thinks that this determination could possibly be the answer. Now that he is strictly being fed through the tube in his nose that goes to his stomach, we are giving him a few days for the lung inflammation to die down, and, hopefully, for his respiratory rate to come down.

IF, and that’s a big “if”, all of that happens, and they see him breathing normally, gaining weight and growing, all while staying off the oxygen, they will send us home… after he has surgery to have a feeding tube inserted into his stomach, with a pop top implanted on his belly for us to tube feed him at home.

Don’t ask me how I feel about this, because, honestly, even typing the words makes me want to break down.

I have to focus on the good, though, that my baby might get to come home and grow stronger before heart surgery, instead of dwelling on the fact that he is adding one more thing to his list of special needs.

I just want to see him roll and play and interact, like a normal baby, in a normal environment. Whatever equipment he needs to do that, we’ll deal with. I just want him home.

But, seriously, damn. I swear, every time we say, “Well, it could be worse,” it actually gets worse. I’m done tempting fate, I will never say those words again. Please don’t let things get worse.

Let’s get better.

5 thoughts on “Unreal

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