Tuesday, June 16, 2009

Long Sigh...

So today does not seem to be Gaines' best day. When I visited this morning Gaines' oxygen was up to 39% and of course I was devastated. Through the night he was between 33-35% but he went up this morning before I arrived. It kills me that he can make huge progress like he did last week and undo it all in the matter of a few hours. While I was there his nurse suctioned him (they do this with his cares about every 4 hours) and was able to clear out his nose so when I left he was back down to 37%. I hope that's all he needed and he'll keep coming back down.

The doctors think that part of his increased oxygen is because they reduced the amount of diuretic he's getting. They were causing his electrolytes to go crazy so they cut back. The doctor this morning told me that they were going to supplement his milk so that he could get more calories with less fluid. He feels that will help offset the reduced diuretic. I guess we'll see.

One of the two attending doctors leaves Friday for 4 weeks so he wants to meet with Beau, me and another doctor on Thursday to make sure we are all on the same page and I think to sort of figure out a game plan. I don't know that Gaines could be transferred or even if we'd want him to be (we just feel he's getting great care here) but we are waiting to hear back from our insurance company to see if they'd cover a medical transfer back home.

Until recently (and he may not be now) he hasn't been healthy enough to transfer. I'm afraid insurance isn't going to want to do this but these doctors think they might. They think a hospital back home would be less expensive than this one and insurance might be willing to pay on the front end to save on the back. Like I said, I don't know that its even what we'd want to do but we want to know if it is at least an option. I hope to know a lot more about what the doctors think long term on Thursday.

I got really discouraged this morning when I saw the increased oxygen. I felt the tears stinging in my eyes and tried to fight them back until I could get out of the NICU but I couldn't. They spilled over and I desperately tried to hide it from all the doctors (they were all near because they do rounds near Gaines bed) but they saw me. Gaines' main attending doctor came over to try and reassure me. I told him that I was just so discouraged because he seemed to be going in the right direction. He told me that he was going in the right direction and not to let one day of increased oxygen get me upset. He said it could be many things that just messed him up for a little while. I pray that he's right and that when I call back, he's back to what I consider his "normal" range. I'll keep you updated.

I just want to take a second and thank you all for joining Beau and me on this journey. Your prayers and kind words via this blog, email, facebook, cards etc keep us going. Especially on days like today when its hard to stay positive. Please keep Gaines and our family in your prayers. Specifically for Gaines lungs to mature and get better.

Love to all,



Carrie said...

I'm so sorry to hear that it was a frustrating day for you and a bad oxygen day for Gaines. I can't imagine how frustrated you must be. You're doing so well and staying so strong through SO much. It's okay if you need to cry a little sometimes. We all (and I'm sure the doctors and nurses too) understand that you're going through a lot.

Know we're praying for you and your whole family.

Lynsey said...

Hey Brittany and Family,
We are thinking of you and keeping you in our prayers. Stay positive and everything will fall into place as needed. You've got another mom in your corner in the fight against lung disease!! Love yall!

Rachel E. said...

I'm praying for you all right now. I'm so glad to hear that Gaines is getting such awesome care where he is now.

Heather Marie said...

So sorry to hear you are discouraged. Praying faithfully in Ohio!

Devon said...

((hugs)) i dont know you but i know what its like to be a preemie mom and watch your baby take two steps forward only to take one back....

and the closer going home is the further away it seems. hang in there....i know the days are long but i'm praying and thinking of you.

and i promise, one day you'll look back and this will all seem like a distant memory. hard to believe right now, i know....


Tiffany Lockette said...

Thinking of you guys and sending you great, great big hugs. Hang in there. My prayers continue for Mr. Gaines. Come on little man, you can do it. Keep the faith.

Jill said...


As a former NICU mom, I remember that feeling all too well of wanting them to just get well. I felt that if I could just crawl into that isolet with my son that it would make it all better (for both of us). My son was born @ 28 wks, but weighed only 1 lb 7 oz. He spent 6 weeks on the vent, so I know the frustration and fear you feel. It truly is a rollercoaster of emotions and progress/setbacks. He spent 13 wks in the NICU and is now a happy and active almost 3 year-old.

I check in on your blog every day to see how Gaines is doing and to pray for him. I wish I would have had an outlet like this 3 years ago. I will continue to pray for strength for you and your family in the coming weeks, particulary with some of the decisions you must make. Remember that the Lord is with you always.

Jill Stewart
Columbia, SC

Jen said...

I normally just lurk everyday to check on Gaines but thought I would ask if you had looked into Angel Flights if your insurance will not cover transporting him back to a hospital closer to home. Here is the website for the DC region.... http://www.angelflightmidatlantic.org/

Jennifer in WV

Footprints Ministry said...

"Come to me, all of you who are weary and carry heavy burdens, and I will give you rest." Matthew 11:28

Praying the Lord will give you comfort and peace.

All of your friends from the Footprints Ministry

Chris & AnnMarie said...

Hang in there, Brittany!

You are doing an amazing job trying to juggle all that's on your plate right now. There were many, many days where I sobbed in the NICU (although I tried so hard to keep it in). Let it out and know that the emotions you're feeling are completely normal.

I am praying for Gaines to improve daily and for your peace & strength. Gaines has defied the odds from day 1 and he will continue to do so.

In Him,
Ann Marie Kolkhorst
(my son is a former 23 weeker, now 18 months old)

Andrew and Lauren Hess said...

Daniel Family,

Just know that there are so many of of NICU moms and dads out there who are checking in on you and praying for Gaines every day. My sons were on this roller coaster 2 years ago. We did loose Carson's brother due to other major complications after 40 days but Carson took his strength and has amazed us all ever since. However, we had several little "setbacks" along the way. I remember feeling so deflated when I would see the oxygen levels creeping back up. When all you want is a specific reason why, the nurses and doctors have to play a guessing game of what could be wrong. It is a very frustrating time that only someone who has been there can realize just how trying it is on your emotions. Gaines is a fighter. He just needs a few days to catch his breath from working so hard. We will pray for the right solution to moving him from one hospital to another. Hang in there and stay strong!

NICU mom,

Lauren Hess