Anyways here is where we are...
Jasiu is still quite cranky.. though we see a smile here and there, he still doesn't babble and coo quite as he did before. He's mostly either quiet and sleeping or way on the opposite side crying hysterically with very little in between. The last few days I felt like the colic is back, however now it's every two hours instead of the 7-11 time frame. We thought it was pain, however that doesn't work, not Tylenol, not Motrin or even Lortab! The only thing that calms him down is wearing himself down to sleep. I also thought it was the headaches, but I think that the pain meds would take care of it. Mostly the screaming doesn't look like a pain cry, but a cranky and whiny cry and he's just so used to it from the hospital that he can't stop himself... I'm beside myself and don't know what is really causing it just speculating. Even a diaper change which before was no big deal is a scream fest. It's quite frustrating especially because of the crying he does poorly with his feeds. Ohh how far we came from the first time he ate after the Glenn (the whole bottle for the first time ever!) to almost completely nothing.. we get an ounce here and there, but the bottle is interfering with his crying so he refuses to eat. The positive note here is that until this morning he has not thrown up in a week as well and has a large appetite but it's for the tube ( I think he threw up only because he was crying so much while I was feeding him through the tube)... He wakes up for food every 3 hours when he used to eat every 4 so we increased to 4.5 ounces per feed. That seemed to work but because we have a 2oz tube it takes a few sips from the bottle to the tube to finish. Since we are tube feeding him and the 4.5 oz, he seemed to pick up on he scale I am pretty sure I just hope my arm muscles will show it. We go the the pediatrician this week so we will see. He still was not in the swing yet because he screams in it, I have not been able to sit down when he's awake because the person holding him can not sit and must stand and rock him. He has not been on his play mat yet, again because at the second we put him down he screams and wants to be on someones hands.
It's been a tough week and I am still recuperating mentally and physically and I'm not even the one that had the surgery. I know he will come around it just seems like it was faster from before because we spent 3 weeks in the hospital post surgery and here we were back in 3 days. I know it has to be worse before it can get better and I know everyone keeps telling me he will eat... but WHEN !!! I want my Jasiu's pre Glenn attitude back.. He came along so far from the Norwood and I feel like we are right back where we started. I really hope it doesn't take 3 months to get there, by then the summer will be over and RSV season upon us and we'll be stuck at home again... :( Here I thought that Jasiu's first outing will be to my cousin's baby girl's Baptism since it's over two weeks post Glenn, but I'm not so sure that we can make such a large comeback in a week... but secretly hoping that he will.. So yet again, one more party we will probably attend separately. ..
All that said though... compared to the alternative I will take this any minute. After every melt down, I keep telling myself he is here with us, thriving (by means of NG, but thriving) and generally moving in the right direction health wise so we are BLESSED to be here post Glenn no matter how rough the road to recovery will be. One thing for sure, it's a relief to be here and not to have a planned surgery hanging over our heads for at least a year. That in itself is a good feeling as for the rest we will take it day by day, hour by hour.. what else can we do?
We are also blessed that we had a holiday with Jasiu at HOME. Way too many parents and childeren have to spend it in the confinds of a hospital room so I am done complaining for now. Here are a few pictures of the kids. Jasiu is sleeping because that's the only good picture I could take where he wasn't crying...
Please say a prayer for Jasiu and for his speedy recovery, especially that he begins to like his bottle and then solid foods. I know God had a plan for him, I just have a really tough time seeing why he can't just eat and be healthy now.
|Happy 4th Jasiu !|
|Cousins enjoying ice cream on a HOT 4th of July (Emily's in the middle)|
|Can't get one to stop the bottle and one to take it.. *sigh*|