Another Rollercoaster Week

October 05, 2023

The past week for Toñio has been slightly less hectic than the week before, but it was still constant highs and lows. He finally stopped having such drastic increases in oxygen requirement every night, and had a couple of pretty stable days Friday and Saturday. We had him down to 49% at one time. We thought maybe he was turning a corner, but Sunday proved us wrong. He was very drifty and ended up on more oxygen and was just having much more difficulty breathing. Sometimes the steroid course can cause them to be really upset all the time, so we went up on the amount of pain medication he's getting. I hate that because it's really not good for his neuro development, but I also hate seeing him so upset. Monday was similar. Tuesday and Wednesday were more positive days. He was finally in a good spot sedation wise and his swelling was nearly gone. He looks like our baby again which is really nice! I've read studies on massage therapy in NICU babies and the results are amazing for weight gain and bone density improvement, so I've been trying to do that with him as often as I can. He doesn't usually tolerate it for very long, but for those couple of days he was awake and tolerating it. It's so wonderful when we get to see glimpses of what it would be like to have him comfortable and interactive if he were at home.

Today we did a bronchoscopy to look at his airway. The neonatologist this week was worried that maybe some of his problems were due to scarring or "floppiness." Thankfully it didn't look near as bad as the doctor was afraid that it would. That's great because it could be much harder to manage him if he did have some of those problems. I was almost hoping to see something that would give us a reason for him not improving though, there was a chance that it would be fixable and help him a lot if that was the case. Now that we've ruled out the PDA and his airway, all that is left to do is wait. We have to see if his lungs will continue to develop and grow along with his body. Time and nutrition are his only options really.

I really started to lose hope when he didn't respond to the steroids like they had hoped over the weekend, and I was worried that we were running out of things to try. He'll be 35 weeks gestation tomorrow, and turned 9 weeks old this Tuesday. If I had stayed pregnant I would've been induced last Friday, which is wild to think about being on bedrest this entire time! I asked a lot of questions about possible outcomes for him, 2 months with hardly any improvement in his respiratory function is really hard to swallow. The consensus seems to be that this is an important month for Antonio. His due date was supposed to be November 10th, so if we reach that week with no improvement they will be much more concerned. I've asked about when they start talking about doing a tracheostomy. They tell me that they don't start that conversation until they are at least 40 weeks. His lung function would have to improve in order for us to even have that option, his pressure settings are still too high. Most babies that are able to go home with a trach have it removed by age 2, but it's still a very difficult road. The neonatologist told me it would be like running an ICU in our home 24/7. It is SO hard to be patient, especially when we truly don't know what his outcome will be. Sometimes it feels like everyone knows something that we don't, and I don't ever want that to be the case. After talking with multiple providers I don't think that's true, they really don't know what he's going to do in the next 7 weeks.

We're hoping and praying that he'll grow like crazy this month, and that his lungs will follow suit. And that he'll stop being so angry after his steroid course is done so that we can take our time doing his cares more often.

There is a lot to be thankful for in the meantime. He is still tolerating his feeds wonderfully, which is super important for his growth. He's not spitting up and he's still where they want him on the growth chart, even after losing a lot of water weight this week. The lowest weight that we saw was 5lb 4oz. The highest that he reached last week was 5lb 12oz. Last night he was 5lb 8oz with very little swelling. His constipation issues have resolved for the most part, so he's much less uncomfortable in that way. His eye exam this week showed that his eye disease had not worsened, if anything it maybe improved a tiny bit. I was so pleasantly surprised because they wanted him satting 97-99% for a week to try to correct it and he's only had about 24 hours where he did that at all. He's had his eyes open a lot more the past couple of days and he seems to be looking around and occasionally making eye contact appropriately. And because his airways didn't look as bad as they expected they were able to go down on his pressure settings just a little bit and he seems to be tolerating it well so far. Also I got little receiving blankets to use as sheets on his bed, makes it feel a little less like a hospital!

Only time will tell how he's going to do. We'll just keep showing up and loving him while we wait.