Weekend Update

Today has been a very emotional day already. Everything is still in line with the treatment we’re expecting, but that doesn’t make it any easier when things seem to go backwards. Yesterday and into last night, Auggie was having a little too much trouble breathing, so the doctors decided to give him more help than they had been. He was on a CPAP, which doesn’t help the frequency of breaths, just the strength of them. He was struggling with that, so they switched to a NIPPV, which provides the strength of breaths as well as actually providing breaths when he forgets. It is still just a non-invasive nose tube, so that’s good, but we have been cautioned that there is still the chance he may need the breathing tube into his chest (through his windpipe, no incisions).

The reason he is struggling isn’t just his lack of strength and development, but because he is learning to do so many things at once. He is still receiving breastmilk and he is tolerating that. It takes him a lot of strength and energy to digest his food, so we don’t want him expending all of his energy learning how to breath as well. As he gets better at these two things together, they will step him down again and give it another try with the CPAP.
There was also a concern that the line in his stomach through the umbilical cord may be getting irritated. The doctors have been keeping an eye on it, but decided this morning to remove that. They replaced it with an IV in his leg. One thing I learned is that IV’s have a relatively short time period that they can be in. The hope is that Auggie will be taking his full dose of food within the next day or two. Once that happens, they no longer need the IV and the medicine can be administered with his food.
He is still under the photo therapy because of his bilirubin count, but hopefully that will be over with soon.
In the meantime, things are moving forward. He is getting stronger and so are we. Meg is providing him all the food he needs and we will continue to watch him grow.



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