Sunday, September 6, 2009

A Really Long One...

So much to tell.

Sorry for the delay in posting but I've been a little preoccupied. I just got home from the hospital not too long ago and the first order of business was a shower followed quickly by dinner. Being in that hospital room brought back vivid memories of my 6 week stay not too long ago and I had to get the hospital smell off of me...but let me get to the reason you all are reading...Gaines.

Friday, Beau and I were all set to spend the weekend with Gaines but late Friday afternoon Beau called me with bad news. He'd just found out that one of his co-workers (in a cozy office) had been in the office the last few days with the flu. Beau felt fine but we didn't think it was the best idea for him to be in such close quarters with Gaines just in case. So...I roomed in by myself.

Gaines did great and so did I. I was nervous for the first couple of hours alone with him but sometime in the middle of the night I started feeling more comfortable and was able to get a little between every three hour feedings.

Saturday I was able to move my bed a little closer to Gaines' bed and concentrator (machine that turns room air into oxygen). He and I got in my bed and snuggled up for an early morning nap. I think we both slept great. I didn't really intend to sleep but it just sort of snuck up on me. We spent most of the day napping, resting, playing, reading etc. Gaines also got to watch his first college football game (roll tide by the way). It was a pretty relaxing day. He is just about the cutest thing I've ever seen and he really is a good baby. He rarely even cried.

Today was more of the same except that our nanny and my mom were able to come visit. The visit with our nanny (I feel ridiculous saying "Our nanny") really reinforced that we'd made a good decision with her. Before we met her, I thought that we'd talk to a couple of people before we decided on one but this situation was just too perfect. Beau and I decided to look at it as God providing for us yet again. It was His way of letting us focus on Gaines and not a nanny search.

As well as everything went this weekend with Gaines, there was a sort of dark cloud that dampened things. In my visit with the doctor on Saturday we talked about how well Gaines was doing with his oxygen situation and all the progress that he's made lately. He also mentioned some concerns that he had about the "tone" in Gaines' legs. Apparently tone means stiffness...I later learned from the occupational therapist that the muscles in the back of his thighs and calves were tight. He was also concerned about Gaines lack of head control. These two things can easily be explained as issues of prematurity and spending the last four months in a hospital but combined with Gaines' rough start, the doctors and therapists believe that he could have some mild cerebral palsy. The doctor told me that the chance was "probably very low" (I had to ask that question about 5 times to get an answer that I deemed acceptable) but not exactly what a mother (who finally feels like her baby is getting better) wants to hear.

This is not a diagnosis, only something that we are watching. If he does have it, he would be a mild case and it wouldn't be diagnosed until he was about 2 years old at the earliest. It could be as mild as walking on tip toes (which I believe can be corrected surgically) or more moderate like needing braces to walk. It could also be nothing and completely eradicated with physical therapy.

Thankfully, if he does have it (and I really need to research CP because I know very little about it), it is not a severe case. We'd already know about it from brain scans if it was severe. Along with all of our other prayer requests, please add this one. Please pray that through therapy we are able to correct the concerns and move forward with our healthy baby. I know that in the great scheme of things this is a relatively small thing, but any mother would want a happy, healthy, "normal" baby and I'm no different. I may not post much about this as its something I don't intend to waste energy worrying about but I will keep you updated as needed or with any progress.

It is interesting to me that many times along this journey, we would get some really good news but shortly after we'd be faced with some sort of possibility of something bad (possible heart surgeries, a rare genetic disorder, possible feeding tubes, etc). Something that would take our focus off of the good that God was doing but in the end turn out to be nothing.

Now, I'm not typically the type of person to go around talking about the devil because until this, I thought people who did were a little crazy...BUT, many times during this journey I have sensed how very real he is. I do not even pretend to understand why God lets the devil have his way with us (I think it might be so that we can glorify God as he get's us through our interpretation anyway) but the very real truth is that we live in a fallen world. We live in a world that God did not intend for us and because of this we have to contend with and constantly battle the devil in our choices, our thoughts and in our actions. I'm not saying that this CP possibility was brought on by the devil or anything like that, I just think its interesting that as we start to get better and better news about a release date, something like this pops up to take our focus off the good stuff that God is doing. I don't know...something to think about.

Moving on to the really great news...I've been saving it for last. If everything continues to go well this week, and as long as this week's doctor (of course we'll have a new one tomorrow) is on board, it looks like we could be bringing Gaines home next in five days. Please pray for this to work out and for comfort, strength and peace for Beau and me. It will be very stressful at our house for a few days as we adjust to taking care of Gaines on our own.

We also ask that you pray that the timing is right on this. The last thing we want is to have to take him back to the hospital once he is released. Please pray that our family stays healthy so that we do not bring any bad germs in our house. Any illness like the cold or flu could be devastating to Gaines. We are extremely nervous about bringing Gaines home in the middle of this flu season. So, if any of you reading this think that you might be thinking about getting sick, or been around someone who sneezed or just looks sick...stay away from us! Please.

One quick thing about Reed before I head to bed. Tonight he ate a really great dinner so we let him have a piece of pound cake that my grandmother sent us (he loves it...and for good reason!). After he got done, Beau pulled the tray off of his highchair and upon seeing all the crumbs said, "" To which Reed replied, "Oh.......My.......Josh". Probably only really funny to his mother but I thought it was pretty cute.

Please keep us all in your prayers and thanks for putting up with all my parenthesis and ...s.

Love to all,



Giggles said...

Praying for good things on Friday!

Trisha said...

He's getting so close to coming home! I am so happy for you guys! I can't find your email on your blog, but if you have a minute, could you send me your email address? Gaines sounds so much like our Caleb (who's now 3)and I'd like to email you privately if you're open to it. (We also got the "CP talk" due to his stiff legs before we left the NICU....)
Take care,

Rachel E. said...

I'm so glad to hear your weekend at the hospital went well! I pray that Beau will not come down with the flu and that you'll all stay healthy for Gaines' sake. What AWESOME news that you may all be together under one roof this week! I can't wait!

SarahMerritt said...

I got chills thinking about Gaines comming home Friday! Oh this NICU journey may be over soon! I will pray for you all to stay healthy and for Gaines to have a wonderful week and that you will be a happy family in your home by this time next week!

Kelli said...

Keep us posted and we're rooting for that little boy! So wonderful to hear that he's almost ready to go home!!! :)


Kelli in Grand Bay

Linda said...

Thinking of you and praying that your boy is home soon!

Diana said...

Praying that all your prayers are answered and that Gaines is sleeping in his own house this weekend!

Michelle Cearley said...

We'll be praying for your family as you transition to hopefully getting Gaines home. I know it will be good to care for him yourself, but don't put too much pressure on yourself because it will be a lot to learn at first. It took several months with my preemie at home before I felt like it was comfortable and routine. You will get used to it just like you have all the other challenges so far. Just take it one day at a time.

Hopefully, Gaines can have Synagis injections to protect him against RSV this flu season, as most preemies get those monthly for five months or so. My preemie didn't get sick at all the first winter! It will be some adjustment to have to take turns going to the store or church, so that Gaines basically never leaves the house. However, that is still much better for bonding than being in the hospital.

I'm praying that CP isn't an issue, and that his muscle tone develops. Your perspective is good not to worry about the unknown at this point. God has it all in His hand.

kim_brough said...

Here's praying that Gaines does get to come home this week. I would be strict about who all comes to see him; everybody will understand why you don't want your sweet little guy exposed to germs. Especially as long as you keep them updated with pictures, say, like on this blog. :-) Then when the weather gets warm you can have lots of people over for a "Gaines is at home and it's not flu season" party.

Lesley said...

I just wanted to say that it is wonderful that your sweetie is doing so well! I also wanted to reassure you that in the smallest of chances that he has CP, it is not necessarily a 'bad' thing. That is probably hard for you to believe, but it's true!
My youngest child has severe disabilities and she is truly a gift to our family. Her disabilities are a gift. It is a positive, beautiful, wonderful thing. She is our teacher. My older children and I are much more empathetic, sensitive, multilayered people because of her and her 'CP'. Sure, we have been challenged, but not her! She is delightful, happy and endearing. She is learning and growing. She is the BEST thing that could have ever happened to our family. We are so blessed. I often wonder how I got so lucky to have been given this special child.

You might be in for a wonderful surprise :)

The Ellis Family said...

Beau and Brit,

We'll get you hooked up with the wonderful folks at Alabama's Early Intervention program for physical therapy (and occupational and eventually speech if he needs them). Kat had poor muscle tone too and concerns of mild CP, but through physical therapy that little monster is ALL over the place!! We'll pray that he overcomes this obstacle too.

And you let us know if we can put in a good word for you with the pulmonologist - we are a little familiar with them!! I'll see Dr. Lozano tomorrow.

Hugs and kisses!!

Proud Aunt Kelly, Uncle Greg, and cousins Maddie and Kat

Coach's Wife said...

Praying for Gaines and your entire family! I am so happy to hear of the amazing progree Gaines has had recently, I know you guys needed some encouragement. I can't imagine the fear associated with bringing him home though! :) Not that you have time right now, or any time for that matter with 2 children, but I would like to recommend a book that I am reading . It's called The Shack. You may have heard of it. It's difficult to read at points, being a mother, but I feel that it really explains a lot of the way God is and how he handles situations. I think I may go back and reread it because as I'm going through it, some seems to go over my head! LOL I think I just need to have quiet time to myself to read the book slowly and pray over it. Just a suggestion, but in your post you made some comments that really made me think of this book. I hope you guys have a great week!

Karen said...

I'm still praying hard here in Virginia (even though ya'll beat my Hokies..haha). I'm so anxious and praying that Gaines is able to go home very soon!

And about that possible CP...we just got that "possible CP" talk about Ryan because Ryan has stiffness in his leg (and has since he was in the NICU). He got PT from 6mo until he started walking at 13 months and has been fine since. He started toe walking recently, which most all kids do at some point before age 3. For various other reasons which are too long to get into here, he is getting some test done but I have my doubts about CP. CP can be so very mild, so does that mean every child who has stiffness or toe walks has it? I don't know but it should be the furthest thing from your mind right now..JMO. Take it one day at a time!
Karen in Virginia