Thursday, July 9, 2009


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,



tricia said...

Brittany...just wanted to let you know we saw Reed today at school and he was doing great!! He was running around on the playground and even stopped to "talk" to me for a second! Jane and Eloise were glad he is back!! I'm sure he will love water play tomorrow!!

dylonhoustonlaetonreid said...

Daniel Family!
Im so glad that ya'll made back to Sweet home Alabama, there is truly no place like home. I know how grateful it is to have the community come together for ya' is a humbling experience.
Heart Hugs!

Sarah said...

So happy you made it back it safely and are starting to get settled in.

By the way, Alexandru gets SO excited when your blog is up on my computer, he starts yelling "puppy! puppy!" and makes me scroll down so he can see the picture of Jack. :)

Debra Davis said...

Your Alfa family is so glad to have yall back in Alabama! I was disappointed that Gaines won't be at Baptist South across the street but hey across town is SO MUCH better than across the country! You are a blessed and amazing family and an inspiration to us all! May god cpontinue to bless you!

Karen said...

Thanks for taking the time and energy to post the update last night. SOOOOOO glad you're back on your home turf; sounds like you've got a great support system - LET THESE PEOPLE HELP YOU. We'll just keep on praying!

Karen in Oneonta

Stephanie said...

What wonderful friends you guys have and how great it was to go home to things that had been taken care of that you didn't have to worry about!

Glad Gaines is doing well...praying for steady improvements!

Reed will adjust soon again to will take some time as that just hasn't been his schedule in a while but it will happen.

Hope you guys get some rest soon!

Anonymous said...

Glad that Gaines is doing so well! I had to laugh at the hand-me-downs comment since my second son has suffered the same fate. Once in a while when he gets something new we marvel and say, oh look something that hasn't been worn by his brother!

So happy that you are all home!