Thursday, August 20, 2009

An Answered Prayer

So remember two nights ago when I asked for you all to please pray for him to start taking his bottles better? Well guess what. Gaines took a whole bottle today at his two o'clock feeding! Beau and I (and all the nurses) are so excited. I pray that he's able to do it again tonight and that it wasn't just a fluke. Right now he is supposed to be trying the bottle twice a day...every 12 hours. Hopefully he'll do well tonight and tomorrow be able to pick up the bottle a little more often.

Today's doctor changed several things, including his milk concoction, so that could be what got him going today. His food might taste better without all the extra additives in it. His milk was being supplemented with one kind of formula and MCT oil (and maybe a few other things) to make it more caloric. They are now only supplementing with a preemie formula. I'm hoping that this change will get the little guy excited about eating.

The doctor also took Gaines off of his Reglan and Zantac (both were for his reflux) and his Lasix. A lot of big changes. I'm curious to see if he can handle it. We've known all along that Gaines is on a LOT of medicines and I think now that the doctor (this one anyway) wants to try and get rid of some. I'm ok with trying...they can always add them back.

Also, his oxygen is back down to 50% which is just about where is was on Monday when they changed his parameters and we had to bump him to 70%. I am so thankful for that because even with the new parameters and the loss of one dose of Lasix (the no Lasix deal started today but he lost one dose on Monday) he's able to bring his oxygen requirement down. I am loving this progress and PRAY that it keeps up.

Today has been a much needed good day. I've had a pretty rough week with all the doctor craziness and everything. I know that doctor changes may seem silly to some of you but in this situation, all we can do is trust the doctors...I don't know how to make Gaines better. Its just when their plans/ideas conflict with each other you lose some of that ability to trust them and it adds a lot of stress to an already stressful situation.

Several times this week I have just been in tears because I am so emotionally tired of this. It has been a long 5 months (PS...Gaines will be 4 months on Monday). I'm so tired of being strong and there are many days that I just want to curl up in bed and pretend this never happened. The good news is that Gaines isn't giving up and I'm sure not either. If that little baby can keep fighting, so can I. Even when I think I can't take another day.

Please continue to keep Gaines in your prayers. Keep praying for his lungs and for those bottle feedings. Today was huge but he still has a long way to go. Also, please keep all of the NICU babies and their families in your prayers. For many parents their NICU journey is just beginning.

Love to all,



Amanda said...

5 months is a long time to have this kind of a dramatic roller coaster! Add to it that most of this journey took place away from home. And now you are back home, but things are still not back to the old normal nor are they "right" just yet. I'd want to curl up and just have a good cry too. I remember many days when I just wanted to be able to go to sleep and wake up on discharge day. I don't think your frustration over the changing doctors is silly at all. that's a big deal. they are the ones (here on this earth) that you are turning to for wisdom and guidance on caring for your son. The inconsistencies between them all would drive me crazy. You are doing awesome being strong. But it's okay to just let it all fade for a good cry every now and then and to admit you are tired of all this. HE has it all. Great news on the dc'd meds and the full feed with the bottle. Way to go little guy! and so sweet of you to remind everyone to pray for the other families in the NICU who are starting their journey. Very compasionate of you.

King J's Queen said...

Yay for all the great improvements today! My daughter was on Reglan for a short time. The difference in her after she was done was incredible. I hope you see the same with Gaines.

The Williamson's said...

I'm very happy to hear that Gaines is doing so well and that he took his first whole bottle. That's great! I'm continuing to pray for him everyday, that he will continue to make progress and tolerate all the changes well.
Hang in there!

regina said...

Gaines is growing bigger and stronger every day - he'll be home before you know it! I know you're ready for some sense of normalcy, but things are going on His timeline. Gaines will be home soon, and you'll be able to kiss that sweet face all day long!

Jill said...

I'm so glad that Gaines is doing better. I will pray that this is the start down that last hill towards home. I know the time is creeping by now but you will look back in 3 years and wonder where the time went. For Mason's 3rd birthday we had friends and family bring preemie clothes to donate to the NICU. Yesterday, we took them over and got to see his primary doctor, nurse practicioner, and 4 of his nurses.

Lori said...

I can imagine that emotional rollercoaster. Who knows, maybe it's good having so many different opinions. They're all doing what they beleive is best for Gaines. It'll work out in the end and when you feel like letting all those crazy emotions out, just do it and you'll feel so much better.