Sunday, September 20, 2009

Sept. 18-20, 2009

Another day just zoomed by and I can't even recall exactly what happened. It's scary when I can't even remember what I made Kayla and I for breakfast, lunch is about as far as I can remember. In fact I actually had to write a shopping list for 4 things at the grocery store, that's pretty bad. I think that Shannon and I are just on auto-pilot to get through the day. It seems that no amount of sleep actually makes you feel any better, its a feeling I have never felt before. I feel bad that so many people call to talk and see how we are doing and I just don't even have the energy to talk. It's a horrible feeling.
Gabe has been doing fairly well considering what he has gone through in the past months. He has not been getting as many PRN dosages of pain meds as he has in the past, which is great. They have even been bringing his pain meds down slowly. Gabe has been resting comfortably and even having long durations of awake time. It is so great to see his little eyes open, taking in the world, or I should say the world above his head. Which is why we put a mobile on his bed, to give a little something to look at. He also enjoys listening to his iPod which has about 14 hours of relaxing spa music for him to listen to. I even modified a set of ear muffs to hold his iPod ear buds. Eat your heart out Apple! He will literally listen to them all day long.
We are now able to touch Gabe and move him without causing too much pain to the little guy. So we are taking advantage of this time to massage his arms to get them down from his side. I know the muscle man pose is sexy but we don't want him to look like that forever. It takes me about an hour of massaging to get his arms down by his side. Then I put his hand braces and believe it or not he actually falls asleep when I do it.
Gabe also got to lie on his tummy for the first time the other day. He loved it!!! He actually fell asleep right after they turned him over. Thank you nurse "L"! Gabe has since been turning over on his tummy on a daily basis. This also opens up parts of his lungs that have never even been oxygenated before, so this is very good for him. It was so cute to see his little back. We have RARELY gotten to see his back so this has been a real treat. Its so weird to say you haven't seen your sons back in almost 3 months. Crazy.
Shannon and I had a conversation the other night about how we haven't gotten to experience any of the normal baby things you get to do when you bring your child home from the hospital. All the little things that we all take for granted. We miss those things that most parents can't stand. I would give anything to wake up in the middle of the night to feed my son, change his diaper and put him back to sleep. All the normal things parents get to enjoy with their newborn, we have missed. This hurts.
The other GREAT news I forgot to mention is that we found out a couple of days ago that Gabe DOES NOT have Glycogen Storage Disease!!! This is incredible news, since this would be a road that would not lead to good things. Way to go Gabe!!!
I Love You my son!

Thank you all for being patient while we take a little longer than usual to get things done. Keep us in your prayers and thoughts.

1 comment:

dollyponcato said...

Way to go Gabe! It is so great to be able to see how well you are doing. What great news about the Glycogen Storage Disease! Gabe, you seize to amaze us all each and every time we log on to check on you! :) It was so sweet to see your adorable little face when your Daddy was massaging your arms. You look like you really enjoy that time with him.
Jesse and Shannon, you two are doing such a wonderful job! Jesse, you should totally sell your modified ear buds to Apple. They should make then, and sell them in NICU's soley for thie purpose.
We love you all and we think about you each and every day.