This post is taking the last bit of energy that I have today. I'm worn out and so is poor Beau. I at least got about 2 hours of sleep last night...I think he got about 25 minutes on the plane. Today has been a really good day but we've been super busy. We have so much stuff to unpack, organize, laundry, etc. My goal today was to get Reed's new room finished and organized. It's close...I just need to find a big basket for his toys. I might tackle putting away my clothes tomorrow.
We also met one of Gaines' new doctors, several nurses and got acquainted with a new NICU today. So many things are similar but so many are different too. Just things like the way you wash your hands etc. Beau said today that it feels like we are starting over. I know what he means...we just have to adapt to our new surroundings, policies etc. Reed won't be able to visit Gaines here. He's not old enough. Good thing Reed was never super excited to visit him. I'm sure that he's going to get his fill of Gaines very soon.
Gaines is doing great today. They transported him on nasal cannula last night and since he did so well on it, the doctor here wants to see how long he can tolerate it. As of right now, he's on 35% oxygen with a flow of 2 liters. I don't exactly know how that compares to CPAP but I'm pretty sure he's not getting the same pressure that he was. We discussed keeping Gaines on CPAP with our doctor this morning and his reason for not using it is just about as strong as our old doctors reasons for using it. I'm too tired to go into all the specifics but it made sense to Beau and me at the time. Right now we feel like we'll give this new team a chance and see what happens the next few days. If things don't get better we'll press to get him back on CPAP. We'll see what happens. Keep in mind that if the cannula doesn't take, he'll be back on CPAP regardless.
There are only three other changes to his care right now. 1. He'll now be getting vitamin D to counteract some of the damage that the lasix can do to his bones. 2. They are trying his by mouth feedings without his feeding tube in. This morning he took 40 of his 60 ccs by mouth. That's a huge improvement. Tonight he only did about 20 but that's still great. I think he may have only done 20 one other time. 3. He is back in an isolet for now. He is still holding his temp fine but the doctor explained that it takes a lot of energy for a baby to do that and by keeping him from working so hard on that, his body can work on re-creating lung tissue.
I mentioned earlier how much stuff we have to do but there is also so much that we don't have to do. We have wonderful friends back home that took care of so many items on my to do list before I ever got back. The flowers in my front pots were replaced, my house was clean with linens washed, cars washed and vacuumed, grass cut, furniture moved, Gaines (hand me down...poor Gaines) clothes washed and in his closet...and so, so much more. There was even a thermostat replaced...I haven't figured out exactly why yet but how nice not to have to worry about fixing something right away. Also, our Sunday School class stocked our kitchen with tons of food. Our fridge, freezer and pantry are overflowing with food. I won't have to grocery shop for a while. They even re-stocked the basics in my fridge that had to be thrown away. We are so incredibly blessed to have such a wonderful support system here. Thank you all...from the bottom of our hearts.
A few notes about Reed. He slept in his big boy bed last night and did great. However, he was not super impressed with going back to school. He cried and it broke my heart. He really does love school. Right now Jack is in Reed's bed curled up. I won't let him stay there all night but I thought it was cute.
I better run for now. This was much longer than I anticipated. My grandparents are coming to visit tomorrow, Beau's family on Saturday and more of my family on Sunday so we are going to have a busy couple of days. Its so nice for Gaines to meet is big family in Alabama!
Thank you all so much for continuing to keep up with and pray for us. We are truly, truly humbled by you support.
Love to all,