busy day.

Today was a very full day! We have been waiting for our pulmonary doctor to come back on and find out what we have to do to get cracking at this home vent situation. I was really bummed to find out we have to wait until he is 4kilos before he can even try the home vent on pressure support. He is 3kilos now and his average weight gain has been 30 grams a day.. That is going to take us a month before he can even try the vent, then he has to adjust to it, and then we have to switch over to the step down unit, finish trach classes, finish training, and set up everything for home, then we can look at going home. So we will be here for Easter for sure, and who knows how much longer after that. Our second Easter in the hospital.
But to throw us a bone here, our doctor did give the go ahead to try trach collar trials. We get 30 mins to start of him getting off the vent, so he does all the breathing on his own with just humidified air to keep him from getting dry. Today we got to do the first trial, and he did great. They didn't want him sleeping during it because they want to give him the best outcome possible, and he stayed awake for most of it but we had to struggle to keep him awake! The last 5 mins he went to sleep. I had them do it right after physical therapy because yesterday he was so wide awake for so long, and I thought he would do the same. But he got too comfy to a point all my picking on him just wasn't going to work. He looked great and tolerated it like a rock star. The neonatologist was really impressed and said if he does well the next few days they will give him more time off of it.

I also asked if we could give him a bath in a tub and they said yes that would be fine. So we did that today.... The tub was waaay to small for him and he pretty much hated the experience, poor thing... But we will get him a bigger tub next time!

During pt/ot they sat him completely upright and he tolerated it very well until he was tired of it. But he didn't drop his heart rate or oxygen, his color in his face looked good.. He did really well, a very strong little boy! Strong for his condition I mean. For healthy babies this probably doesn't sound all that impressive but any goal he completes is worth noting and praising, because doctors were certain he wouldn't even survive birth. Sol definitely has his own ideas and timing down, no one can plan things for him!
He also worked really hard with swallowing during speech. She must have gotten him to swallow 10 times.. The little guy worked really hard all day today! I heard this morning that they came in and talked about the plan for today next to sol and sol must have liked what he heard because he gave them all a bunch of smiles.
I think he also heard the weight gain scare too because he gained 96grams yesterday. Hoping he gained something tonight! Need to work towards that 4 kilo mark!

It has been hard having our family divided. Thiago has to go back to work, especially since it looks like we will be here for so long now. This part is hard to have our lives so separated. My mom is staying with me this week. It gets really lonely being at the hospital by your self and having to listen to allll the doctors with no second set if ears to help you remember every thing. I am grateful for her staying. I wish we didn't have to do this though. Yet I am trying not to get to hung up on it because I missed these days in the nicu with lua. As hard as they are I would go back and do them again to be with her. I dont want to take any day with sol for granted because no one knows when it will be the last day. I dont mean just him and because he has a medical condition, because all of us will one day expire....but each day I love him more and more. He is such a sweet little baby, I really dont want to lose him.