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 sleep...in 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 storms...my 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 weekend...like 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, "Oh...my...gosh." 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,