Sunday, July 12, 2009

Sunday Evening Post

We have had a great couple of days here in the Daniel household. We've been able to get unpacked and mostly organized, visit with lots of family, go to church, spend a good bit of time with Gaines and we were even able to fit in a swim with Reed. It is SO nice to be back.

This morning at church we sang the Doxology at the end of the service and I almost cried. For some reason I've always loved that song and singing it each is one of the things I love about our church. I'd been wanting to sing it for a while as our church in DC didn't really sing a good hymn like I like (I need a church with hymns and pews) but today the words also had a special meaning to me. God is the source of ALL our blessings and I have so many.

Praise God from whom all blessings flow
Praise Him all creatures here below
Praise Him above ye heavenly hosts
Praise Father, Son and Holy Ghost
Amen

Gaines is still doing well on the nasal cannula. He's still at 2 liters and about 40% oxygen. I wish I knew exactly how this compared to CPAP but I don't. I talked to the doctor about it yesterday and he seems to think that nasal cannula on 50-60% oxygen would still be a step in the right direction so I guess we are happy with where he's at. The doctor also told me that if he handled it for about 72 hours, you could pretty much assume he is "on" nasal cannula. This morning Gaines hit 72 hours. I'm so proud of him for maintaining this.

Honestly, I intended to really push the CPAP with the doctors here (I even brought some of the old doctor's research with me) but the doctor here seems to have just as good of a reason not to use it. It's so hard to know what to think...which option is the best? Right now we've decided to just go with these doctors and see if a new treatment shakes things up a bit. I'm hoping to start to see some oxygen weaning about Tuesday or Wednesday this week.

Gaines is still doing really well at taking his bottles. He took 35 ccs for me yesterday and did it again today...only 18 for Beau. The last few days they've been bumping his oxygen up during feedings but they didn't need to today. I guess he was showing out for all of his family that came to see him. My mom, grandmama, granddaddy, aunt, sister and three cousins came to see him today. I'm afraid the hospital is going to start charging us for the soap scrubbies that we've used. Seriously, we are so blessed to have the family that we have. They've been so supportive through this whole thing.

In other news, Reed is back in the crib tonight. He'd been in his big boy bed for a few nights but the last two have not gone so well so we are trying to get him back on a good routine before we try it again. Waking up the last two mornings at 5 and having the freedom to roam around pretty much sealed his fate for a few weeks.

I'm looking forward to getting back to work tomorrow and getting into some sort of routine. I think it will be good for all of us. Reed has not had the best time going back to school and Sunday school this morning was rough on him as well. I hate it because he used to be great about just walking in and telling us "Bye". Maybe some normalcy will do him some good.

Please continue to keep our little Gaines in your prayers. A huge prayer request was answered when we all made it to Montgomery safely but Gaines still has a ways to go. Please pray for his little lungs. Looking back it is amazing to me how far he has come. God is good.

Love to all,

Brittany

11 comments:

Cary said...

Yes Brittany, God is Good! Welcome back to Alabama! That is so awesome! And yes, the prayers will definitely continue!

Karen said...

Soooo glad to hear you're getting settled back at home and that Gaines is still doing well. We'll just keep on praying that improvement continues and that your return to work goes smoothly.

Still praying in Oneonta

Diana said...

Praying that tomorrow goes well for you. Reed has had so many changes over the last few months. I am sure that he will settle in to his new routine fairly soon. Praying for more progress.

Giggles said...

I am so glad that things are going well for you all. I printed out your blog from the "move" to Alabama and took it to my mom. I think it lifted her spirits! I had been keeping her up to date on your family. She was diagnosed with leukemia on Wednesday and your good news really came at a good time! Have a good first day back at work!

Erica said...

So glad you guys are all home together. Praying that a good sense of "normalcy" sets in for you, or at least as much as possible with your little one still in NICU (hopefully not for long, though!!!).

Also, on the oxygen thing, my son was never put on CPAP- he went straight from the vent to oxygen via canula. He even came home on it. Our doctors firmly believed that this was best- that if a baby can do well on the canula there was no reason to use a CPAP. Apparently all doctors differ in their opinions on this, but I just wanted to let you know that my little guy was on the cannula for almost 4 months and he never had a problem. Gaines will be the same!

Prayers from Texas.

Kiley Spears said...

I said down tonight to look at some friends blogs and came across your blog...I had not heard about Gaines yet...I sat down at my computer at a 11:30 pm and it is now 1:50 am...I have been glued to your blog reading it. You and your family have been through so much. I am so proud that you have made it back home safely. I can not imagine being away from family and home that long going through what you when through. I hope Gaines continues to improve and I will keep him in my prayers.

Daxton's Personal Assistant said...

So glad you guys are back to some normalcy! (If being in the NICU, no matter where it is, can be considered normalcy?)

Just wanted to share that, after 8 months in the NICU, one of the biggest lessons I learned with my son is you can take the research and throw it out the window. These babies write their own research, and the docs have to follow the babies' leads sometimes. We were also at two different hospitals, one who preferred CPAP and one who preferred cannula, and our son did better on cannula. CPAP irritated him, especially as he got older, whereas he was able to relax and sleep and interact with the cannula. And a cannula on high flow has a small CPAP effect, anyways.

So good luck as you figure out the new place and they figure out you :)Praying God continues to bless!

Sara said...

We are thrilled that you're back in AL, and little Gaines continues to take steps in the right direction! God is so good! We continue to pray for you. I hope your transition back to work goes smoothly and Gaines will be home-home with you in no time!! Wishing you a blessed day!!
Sara Blakeney

Penni said...

Still praying for you even though you're home! So glad you're all back!!! Jackson, Penni, & the boys

Heather Alison said...

Hi Brittany, Beau, Reed and Gaines-
Wow much has happened in the last week or so. Congratulations on being able to take your little guy home. I will continue to pray that the Great Physician and Miracle Maker blesses you abundantly and strengthens Gaines. You've given the Lord great glory in this trial. I'm sure tons of folks at GW are missing all of you but we celebrate this next step in your journey. It was a pleasure to meet your beautiful family.
blessings,
Heather (from GW :)

Heather Alison said...

Hi Brittany, Beau, Reed and Gaines-
Wow much has happened in the last week or so. Congratulations on being able to take your little guy home. I will continue to pray that the Great Physician and Miracle Maker blesses you abundantly and strengthens Gaines. You've given the Lord great glory in this trial. I'm sure tons of folks at GW are missing all of you but we celebrate this next step in your journey. It was a pleasure to meet your beautiful family.
blessings,
Heather (from GW :)