Saturday, February 8, 2014

well, we are still here

Of course, just as every mother in the NICU, I wanted my son to go home by week 36.....well it didn't happen, obviously. We are still here working on Loxxley taking all of his feeds by mouth. Last week he was up to about 55% of his feeds, then he had the dreaded 2 week
EYE EXAM. 
Now he is taking about 30%......

That damn eye exam is crushing all my hope and making me more depressed than I already was. The docs all say it's necessary and they can perform surgery if the eyes are severely immature. Well, if he can't even tolerate the eye exam, how could he tolerate surgery?????
Seriously, Chris and I were done with the eye exams after the last two when he needed large measures of interventions and 100% oxygen for 3 minutes, not to mentioned he turned blue and stopped breathing, hence the oxygen and suctioning. 
Enough already. 
The docs told me the procedure is necessary and it could prevent him from being blind,
Well my thoughts are,
If he dies from the aftermath of the procedure, then the eye exam was all for not and I would have no child to worry about.
Yes, the docs and the team have saved his life thus far, but I am done. 
I won't to take my baby home. 
We have almost been here 3 long and intense months.
Why isn't Loxxley eating? 
It seems like every time the eye exam is done, it sets him way back. He's so sensitive. 
He isn't even interested in food, he never roots and he just sits there with his cute little mouth open.
I think he has been filled full every day, all day long. 
He also is constipated quite often. So, of course he isn't hungry.
Why would he be?
He was taking over half of his feeds, but it was with much stimulation and agitation and still he was very very sleepy and uninterested.

...I AM TIRED...

When we are at our breaking point and can't take anymore, what do we do?
How do we keep fighting, how do we continue?
What is the driving force behind this?
How do we obtain the drive, the desire, the determination to hang on?

My only solace has come from having hope in God and His plan.
Hope in the future, that things will get easier and that there is a brighter tomorrow. 
(But I doubt, Oh how I doubt His timing big time)

<<I also know, things could always be worse>>

Matthew 11:2 "Come all ye who labour and are heavy laden and I will give you rest."
(when can I rest? I think it means at death...sounds grueling) 
  Psalms 30:5 "For his anger endureth but a moment; in his favour is life: weeping may endure for a night, but joy cometh in the morning.
( I am very angry and uncertain at times)


On a lighter note....
I feel like this, I am barely hanging on, but I am hangin'
This is too funny


<<<<Oh and thank you for all your comments and sincere love. much needed. i barley have time to write a quick few thoughts on here, but I do read EVERY comment>>>>