Monday, May 25, 2009

Home Sick

I wouldn't say that Gaines is having a bad day today but I certainly don't think it's one of his best. This oxygen business is still really weighing on my heart. I feel silly for being a little down about Gaines' lack of progress after my last two posts about how far he has come. He has come a long way and I am SO thankful for that but he still has a long way to go. His oxygen requirement has crept back up again and is around 40%. It looks like the nose piece issue that his nurse told me about isn't the problem as they found a way to fix it and it didn't really help. Also, he got a blood transfusion yesterday that we hoped would help with the oxygen and it hasn't so I'm a little discouraged. I just want my baby to be well. I want to take him home and be a family with him. My heart aches for this as I am just so tired.

I'm tired of walking in that hospital every day...several times a day. I'm tired of sitting in a hospital by my baby's bed and watching numbers and hoping they get better. I'm tired of walking to his bed so hopeful that they will be improving just to be let down. I want so badly to be in my home with Beau, my two boys and Jack. I want to cook dinner for my family, give my babies baths and just be normal. I'm sorry...I've just been homesick for several days now but I've been trying to focus on the positive and honestly I'm just tired of that too. I know that I have so much to be thankful for...I mean I really do...Like I said, I just want my baby to be well.

I had a long talk with the doctor last night about several things. I asked what would be done next if his oxygen requirement kept going up. He said that they'd probably repeat the heart echo at some point to see if that would give them any insight. They aren't doing it right now because he and the attending doctors all believe that Gaines just has bad lungs (my words not theirs...I have to sort of summarize and repeat back to them what I think they've told me to be sure I understand). By that I mean that he not only has the problems associated with being born at 29 weeks, but he also has underdeveloped lungs because of my water breaking so early. I pray that there are no outlying issues and that his lungs start improving these next two weeks.

If you remember, if he still needs oxygen at 36 weeks, he will be diagnosed with Chronic Lung Disease. This is something that he will eventually grow out of but will leave him with decreased lung capacity. I just really want to avoid this if at all possible. PLEASE, pray with me for Gaines' lungs and everything else.

He's still growing...he gained 65 grams last night and is now officially 4 lbs. Such a big gain is probably due to him getting blood yesterday but I think part of it is actual weight.

I guess that's about it for now. Please continue to keep Gaines and our family in your prayers.

Love to all,

Brittany

12 comments:

Billy Irvin said...

Beau & Brittany... We continue to pray for you and pray for complete healing for Gaines and perseverance for you guys. Hang onto the promises of God... this one of great comfort.. from Jeremiah 29:11-13 "I have good plans for you, not plans to hurt you. I will give you hope and a good future. Then you will call my name. You will come to me and pray to me, and I will listen to you. You will search for me. And when you search for me with all your heart, you will find me!"

We pray you feel His hand of comfort..as you long to be home soon.

Billy & Camilla Irvin
Montgomery, AL

Christy said...

I can only imagine how your "Mother" heart is breaking for you to just be home and be together. Thank you for allowing us to lift you up in prayer during the times that you feel low. Praying for all of you in Arizona!

little kit said...

praying for your family

our family said...

Praying for Gaines lungs to show major improvement in the next twoo weeks. Praying for peace and patience as you are far away from home for a little longer still.
Hugs and Prayers
Rachel in PA

Monica @ Writer Chic said...

Brittany,

I have been following your story from the beginning, and wanted to let you know that I am praying in a new and profound way for you and your family this week.

Last Tuesday night, I delivered my son, Duncan Thomas, at 24.5w. He was born directly into heaven.

While I miss him terribly, I have had moments of selfish thankfulness that I'm being spared the heartache that you are feeling right now -- willing a preemie to get better, just wanting to be home with two healthy sons.

As I prepared lunch for our 17 month old Seth today, I thought to myslef, yes, I miss Duncan, but I'm so glad that I'm not pacing a NICU right now, longing to hold either one of my two boys.

I know that our journeys and our griefs are the two sides of the same coin...I just wanted to know that I'm praying for your peace and for Gaines' complete healing.

Monica

Beth said...

We are praying for your strength through this very hard time right now. It sounds like Gaines is a little fighter, and we are definitely praying that he keeps it up!!

Cary said...

Brittany, I am so excited that Gaines has reached the 4 pound point! That is wonderful. I will continue to pray for Gaines well-being and the entire Daniels family.

Cary in Birmingham

Until Journey's End said...

You are doing a wonderful job!

Tiffany Lockette said...

I will be praying for Gaines today, tomorrow and always and your family. Try and remain positive and focus on the positive things rather than the negative things. Keep the faith that God prevails over us all and he will keep Gaines safe. You've got my prayer all the way from Atlanta Georgia.

jensoup said...

I totally understand your feelings-I had them all. Our 27 weeker was diagnosed with chronic lung disease-he came home on low flow oxygen at 36 weeks and was on it till his due date.He is now 4 and has NEVER had a lung related illness of any kind!!(knock on wood) It is amazing what those preemies can do-he'll suprise you his whole life-believe me!
If you ever have a question stop by my blog and leave a comment. I have a few pics of him up from when he was a baby in a post from last week.

Stephanie said...

Praying for his lungs!!!!

Bubeaner said...

Unfortunately your road is not easy. It is so hard to remain positive every day. It is hard to be strong for your baby as things go bad or don't improve like they should.

Our Bubeaner (30 week preemie) spent 8 weeks in the NICU and did not follow "the other preemies" progress. I can't even begin to imagine the additional heartache and hardship of another baby to care for and being so far away from home.

I know people say to focus on the future and imagine when things will be better, but that sometimes made it harder because I would see it so, so far away. It is easier to just live in the present, in the here and now. When panic or heartache would start to set in, I would think about what I could do NOW, what was happening NOW and not add the burden of tomorrow and the unknown. Sometimes it would be as simple as just focusing on placing one foot in front of the other and focusing on sitting by his bassinet and doing our routine. You can feel His presence when you focus in the HERE and NOW.

I do hope that this may help you. I pray that you receive the strength you need and that little Gaines continues to improve. And I pray that you may all be home soon safe and sound.