Monday, June 1, 2009

June

So its June...and...we...are...still...here. This all started in March. Big sigh.

The changing of the month means that our doctors get changed around again. The bad news is that we lose a great doctor that's been seeing Gaines from the start (although he'll be around some because he has a research project going on at GWUH). The good news is that the fellow that was around for Gaines' rough few days is back. We really love both of the fellows and the attendings that have been taking care of Gaines. I talked to the new fellow this morning and she said that she was going to try and get him out of here this month. She followed it up with what we've known all along..."its up to him though". I know that she meant Gaines but I think the "him" that's its up to is the one with the capital H.

This month also brings several things that I had hoped to celebrate at home. Beau and I will have been married for five years on Friday, my birthday is the next Friday and Fathers Day is the next weekend. I'm afraid we'll have to celebrate each of these things in D.C. I'm sure Beau will try and get away with saying he took me to D.C. for our anniversary.

I'd gotten kind of down the last couple of days because I'm so ready to get my family back home. I'd cry and ask Beau when is this going to end and how are we going to handle it once we did get back home. I'd want to know how much more do I have to take before God will fix Gaines. He responded with something that to me was so profound. He said, "This is not a punishment, Brittany". Most days I know that, but I'd never really realized that some days, that's the way I look at it. Like a punishment that I've been trying so hard to get out of.

Beau also reminded me that we could have been home a long time ago...without Gaines. To me that just sort of put things in perspective. Gaines may have days that he doesn't do well and he may have days of no progress but at least he has days. I realize now how very blessed we are to still be here.

Speaking of when we get back home, I'm pretty sure Gaines is not going to be up for daycare right away. We'll probably try and keep him at home through this winter and early spring next year. So, if any of you out there have any suggestions as to where we could find a nanny (can't believe we'll have a nanny...that sounds ridiculous to me) that's willing to work out of the goodness of her heart (kidding obviously) let me know. I have no idea when we'd need them but I figure we better start slowly looking around. I'm only putting this out there because you never know when someone will know someone looking to do something just like this.

Enough of my rambling...I think Gaines is doing pretty well today. His oxygen stayed in the 40s all night and when I left after my visit this morning he was at 44 and doing well. Hopefully they've been able to bump him down some. I told him I wanted him to be in the 30s by tomorrow. Maybe he'll finally start listening to me.

He's gained more weight and is now up to 4 lbs 8 oz. Beau and I agree that he's starting to fill out some. His cheeks looked a little chubbier to me. They've increased his feedings again so he's now up to 40 ccs every three hours (30 ccs is 1 ounce...just for reference).

Last night at church the closing song was I'll Fly Away. It kind of suprised me because this church didn't seem to me like the old hymn singing kind of church but I loved it. The last verse is:

Just a few more weary days and then, I'll fly away.
To a land where joy shall never end, I'll fly away.

Now I know that I'm taking some major liberties with this but it made me think about our situation here. Just a few more weary days and we'll fly away home, a place where joy shall never end. Cheesy I know but it just kind of stuck with me. Ok...now I'm really done with the rambling.

I can't believe some of the stuff I put out here for complete strangers to read...and worse, people I actually know. Oh well...I guess you'll all really know me now...the good, bad, ugly and random.

I guess that's about all for now. Beau is helping some of our new friends move today so its been just me and Reed this morning. He's napping now so I think I'll try and rest a bit.

Please keep us in your prayers. Pray that Gaines' lungs improve and that we don't have to celebrate the fourth of July here.

Love to all,

Brittany

10 comments:

Rachel E. said...

Hi Brittany,
Thank you for continuing to be so honest about this journey to bringing Gaines home. None of us is immune to the ups and downs of life and it helps me to pray for you when you share what you're struggling with. Continuing to pray for Gaines to gain strength in his lungs and for strength for you and Beau.

Footprints Ministry said...

Hey Brittany!
Here's a verse that made me think of you today
"When I am overwhelmed, You alone know the way I should turn" Psalm 142:3
The Lord knows when this NICU journey will be over. We long for that day! Praying for your family everyday!

Tiffany Dawn said...

Thanks for sharing. Still praying for you guys! My bday is next Tues... its amazing how when there's so much going on, bdays dont seem as big of a deal... Keep sharing! We're reading! We're listening. WE're praying for you. And we're being encouraged by your openness and vulnerability.

James 1 is one of my fav's. "Consider it PURE JOY when you face trials". Joy. Pure joy. I think about that like the kind of joy that a small child has when they play with their favorite toy or get their favorite food or see their mommies after being away from them for a week, a day, an hour! He continues saying that He wants us to be COMPLETE... lacking NOTHING. Sometimes I wish he'd just let me be incomplete bc maybe it wouldn't be so hard or hurt so bad... but I have to believe His ways are best. And to even be thankful that he cares enough to make me complete.

I know he's with you guys and I'm so glad you are plugging into a community there. I pray it will continue to minister to you as you form relationships you would have never had the opportunity to form!

Tiffany

bamagrits84 said...

I read your blod and then saw this on facebook and thought they went well together. "God never ends anything on a negative; God always ends on a positive. -- Edwin Louis Cole --" Thank you for the encouragement you provide others by hanging onto your faith in these hard times. For some people it's hard to trust God for the seemingly petty things in life yet your are during such a hard times. But hang in there because the positive is on the way! Thanks, prayers, and love from Bama!

Tiffany Lockette said...

Brittany,
You can't always be the hero. There are going to be days like today when you are just down, tired and feel alone, these type of days are when you really need to lean on our lord, your family and friends to lift you back up. Don't ever feel bad about not being super positive 24 hours a day, even the lord frowns sometimes but he always picks himself back up. Big hugs for Gaines and I will keep the prayers coming. Your friend in Atlanta GA.

Diana said...

Brittany-

Just wanted you to know that I am praying for you. I can't even begin to imagine how hard it must be to be away from home for this long and have so much uncertainty in your life. I am so glad that you have Reed there now. I am sure that helps quite a bit. I am praying that God would continue to help Gaines to progress enough to get home soon. Remember to just lean on God.

p.s. my five year anniversary is Saturday too!

Jeff Helms said...

Beau and Brittany--

Great post. We need to get you on our writing staff. Both of you do a wonderful job of painting a picture of your life in D.C., for those of us praying for you here. I'll take heartfelt and random any day over organized and superficial.

I understand your feeling that what you are going through is a trial or test, but I think the Spirit's comforting thought and Beau's advice are both right on target. Remember in John 9:1-3 the disciples wanted to know who sinned that a man was born blind. Jesus responded, "Neither this man nor his parents sinned, but this happened so that the work of God might be displayed in his life."

I don't know why God allowed Gaines to come early or to have the physical challenges he has, but I do know that He's using your situation to bless lives. Just think, almost 237,000 people have read your blog as of today. Each has read of your faith and your confidence in the one and only Holy God. That's powerful! God's work is definitely being displayed in the life of your family.

Blessings,

JEFF

Chris & AnnMarie said...

Hi Brittany,
I came across your blog I don't remember how!) and wanted you to know I am praying and thinking of you, Beau, Reed, & Gaines.

My son, Coy, was born at 23 weeks in December 2007. He spent 14 weeks in the NICU, 8 weeks on a ventilator. I know exactly how you are feeling right now. I remember getting so upset/discouraged when Coy's oxygen requirements would go up.

My son is now a healthy, happy 18 month old. God does heal these little guys and they do thrive in life!

Hang in there. Before you know it, this hard time will be behind you, and you will have that sweet baby back home in Alabama. It's not an easy road, but a rewarding one for sure! Remember all things are possible with God!

I will continue to pray for y'all and check on Gaines everyday.

Sincerely,
Ann Marie Kolkhorst
www.prayforcoy.blogspot.com

Kate said...

Just wanted to let you know that i still read every day, even though I don't comment often. I'm praying for Gaines!

Candice said...

Hi Daniel Family,
I came across your story from our fellow preemie friend, Coy. I unexpectedly delivered my twin boys at 23w5d. Bentley had an infection that prompted labor, and was unable to be stabilized. Big brother, Rhys, came along for the ride and what a ride it has been.

Rhys is doing amazing. He will be 1 in July. I have not read your entire story, but what I have read brings back the memories. Rhys was on the oscillator for 6 long weeks before he started making progress. He was always in need of high oxygen, and there were many days he was maxed out at 100%. He is actually still on O2, though we're close to getting rid of it.

As Ann Marie said, hang in there. The day will come when you look back on everything you've gone through and you'll be proud of how you handled your journey. You won't be able to imagine how you did it, nor imagine your life without it. Try to look at the big picture and take it one day at a time. These little guys don't get enough credit.

Sincerely,
Candice (Rhys's mom)
www.ok-corral.blogspot.com