Wednesday, June 24, 2009

Not The Best Day

Today hasn't been Gaines' best day. His oxygen is back at 40% and he's breathing pretty hard. The doctors feel like it's because he quit getting the Lasix on Monday. That was my immediate thought as well but this step backwards has been disheartening (to say the least). Today he'll be getting a double dose of Lasix and I feel confident that it will help but seeing 40% brought on a rush of disappointment. It makes me wonder when all of this will end. I got upset when I was talking to the doctor and nurse about it today. Its really hard for me to talk about him not getting better without crying.

The doctor told me that its really hard to treat Gaines because they don't know if they are treating him for Chronic Lung Disease or heart failure...she's says probably because its a little bit of both. She also confirmed what we'd been thinking, that transferring him home on a ventilator would be a major set back for him. This is because getting him back off the ventilator would be very tough. It just reminds me how hard it will be to even get him to a hospital back home.

I'm trying to keep in mind that this will end eventually. One day we'll be able to take our baby home. Its just really hard to focus on that when he's having a down day. When I was talking to one of the doctors she told me how hard it was for them because we kept looking to them for answers and they really didn't have any right now. It occurred to me that she's many times we look to them for answers and I think maybe we haven't been looking high enough. Of course we are faithfully praying for Gaines but maybe we aren't relying on God for our answers. Maybe our mission here (whatever that is) isn't over yet.

I know that all of this is happening for a reason but stepping back and letting God run my life is one of the hardest things I've ever had to do. You wouldn't think that would be too hard of a task but if you really think about it, it is...for me anyway. It is so easy to get angry with God when things aren't going just like I'd like. Its in those times that I really have to focus myself on how good He's been to us through this. I'd love to list all the ways he's taken care of us but there are just too many to list. He has brought Gaines so far and I know that He'll see us through this storm. Beau reminds me all the time that the doctors are only reacting to Gaines and that its only because of God that Gaines is with us. The doctors here are wonderful but we know that they are only God's pawns.

Gaines' heart echo is still scheduled for tomorrow. They also did a chest x-ray on him today. Please pray that something positive will come out of these two things. If they don't show that things are getting better, I pray that they at least point to something that we can fix.

Please keep Gaines and our family in your prayers. Please pray that God will give us direction as we try and decide what is best for Gaines.

Love to all,



The Elletts said...

Hugs and prayers for y'all.

Melody said...

I haven't commented lately but I still read everyday and wanted you to know I'm thinking of you. We faithfully pray every single day for Gaines (I so wish I could get a video of my daughter praying for "Baby Gaines", it's so stinking cute!), and I am praying for you as well. I can't imagine all that you and Beau are going through. When you said "so many times we look to them for answers and I think maybe we haven't been looking high enough" you are absolutely right. Try to find peace in knowing that God knows every single hair on Gaines' head, and every breath he takes. God KNOWS what is going to happen from here and what your every step will be. I know it's sooo hard keeping your eyes on Him when your precious baby is going through this. So that's why God gave you people like all of your readers that will pray for you. :) ((Hugs))

Stephanie T said...

I'm sorry Gaines is having a tough day (and you too). Hang in there! In my opinion (which isn't a doctors) I just think he's just growing slowly. Remember, he isn't even at his due date yet and look how far he has come. I bet you in a few more weeks his lungs and heart will be so much stronger! He's one tough little baby :)

morgan823 said...

This might be my first comment but I want you to know your family is still in my prayers. I've been reading for a while, I found you from Kelly's Korner.

Amanda said...

It's really hard to step back and let God run your life even in the best of circumstances. But as a Mom when your precious baby needs help, man, that's even harder. And it's really frustrating to hear doctors say they don't have the answers either. Sorry Gaines is having a hard day. I know, sure you can look at the big picture and how far he's come, but bad days sometimes just make all those cliche's really not fun. Praying for answers and faith. Your little boy is so loved and held up in prayer- and so are you and Beau and Reed.

Anonymous said...

I know exactly how you feel and my son was only 1 1/2 hours away in the NICU in Northern VA...It was so hard traveling every day to see him and he was only there for a week. But, the feeling of excitement on good days and disappointment on not-so-good days is all the same.

I had to learn to let go and let God and am grateful today for the not-so-good days we had because it makes me appreciate the good days even more.

This will all pass and soon you will be home, in even hotter weather, with your little one! You will certaintly be stonger in the end and I am sure you will appreciate this experience as I did mine.

Praying for your family in VA!

allipmc said...

Praise You in This Storm
words by Mark Hall/music by Mark Hall and Bernie Herms

I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away


I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth

Brittany and Beau,
I am constantly praying for you and your family and hope you will all be home soon.

Allison Pyron McVay

dylonhoustonlaetonreid said...

Amen to what you said about letting God in control of everything...noone understands until you go through something like this. It is so hard, b/c we still think that we have some control of our lives, but we don't. You guys are doing awesome and y'all amaze me everyday with your strength and passion for God. We are still praying for y'all. If I can do anything please don't hesitate!

Daxton's Personal Assistant said...

Hi guys,
I haven't commented in a while but still keep up with you everyday. "Letting go and letting God" is never easy when it's your child, and even harder when you have doctors playing the middle man. I think you're both doing a great job keeping your chins up and remembering the big picture, so don't kick yourselves for getting down sometimes. NICU life is very very taxing.

Jut wanted to let you know my son is over a year and has ASDs, not VSDs, but he takes Lasix every other day and is doing well with it. We still have to supplement his potassium, but they're hoping to get him off it soon. Long story short, babies can get regulated on their Lasix and go home. He's also still on a nasal cannula, but again, he's home, and doing fantastic. Gaines will too. Praying for it to be sooner rather than later :)

We'll keep on praying.

Jayce Tohline said...

I check in to see how you are doing daily, though i have not commented. I did send you scripture cards, did you ever get them? One thing i have learned (the hard way) is the closer we monitor the daily changes the more rocky our ride becomes. If we can keep the end result/ the end picture in mind it make riding the waves a bit easier. You know how when you get the sea sick feeling on a boat you are suppose to look at the horizon and not the waves? same principle. the up and down rocking of the daily reports can keep your eyes off of where you are going...the end result. Stay strong, keep your eyes on the finish line. Believing God for Gaines total healing and your strength. Diane

Andrew and Lauren Hess said...

Thinking and praying for you and baby Gaines. Hang in there and stay strong!

Jennifer said...

Praying for all of you....Beau is right - God is truly controlling every day, every improvement and what looks like a setback - and the doctors just react to that! Praying God gives you peace (and patience :) )

Karen said...

I'm sorry to read that Gaines had a slight setback. A NICU journey is never easy and it IS disheartening when for a couple days he seems to be getting better then all the sudden he has a setback..BUT you have GOD, many many people in your corner praying and the best doctors doing everything they can do. I'm curious though-did they wean him off the lasix or just stop it all the sudden and if so, would that be the reason he reacted with needing more oxygen?

I'm still praying for you all every day and I will pray that tomorrow brings better news.

Karen in Virginia
(glad you enjoyed using the GC

kim_brough said...

I was telling someone just a few weeks ago how silly it was that I was mad at God. I KNOW that I can't win an argument with the Creator of the entire universe, but sometimes I have to do that to feel better. If I'm going to have a personal relationship with God, then he gets the negative aspect of that, too. Yes, He won the argument but I think it made us stronger.

So I do know what you mean about having to remind yourself of all the good God has done for you and the circumstances of life aren't a punishment. (I feel this way for completely different reasons, but the feelings are still the same). Just remember like the staff told you to take Gaines progress one week at a time, not one day. No telling how low his 02 might be next week!
Praying for you!

Billy Irvin said...

Praying you guys feel the strength from this great promise: The Lord is my strength and my shield; my heart trusted in Him, and I am helped; therefore my heart greatly rejoices, and with my song I will praise Him. - Psalm 28:7

and the words to this great song:

Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim
In the light of His glory and grace!