Surgery scheduled

Sorry it has been so sparatic lately with my updating. With Lucas being in the hospital, Kade in there, Jason (my other brother) wife 24 weeks pregnant and having contractions, my 4 year old keeping me quite busy and everything else in general in life, I am quite beat by the end of the day. Not as bad as my poor parents who are the TRUE definition of a rubberband...I can't imagine having three kids, all hurting, and not being able to fix anything. I know they must be feeling so helpless. They, like the rest of our families, have been so so so helpful and supportive during all this! From what I understand, you love your kids, but you REALLY REALLY REALLY LOVE YOUR GRANDKIDS!! I just feel so bad that all three grandsons just born or being born soon are having issues am to have one 2,000 miles always certainly doesn't help things at all... :(

Kade has done ok this week. His head control has gotten better over the last couple weeks. I have to give credit to the nurses who have really been working with him when I am not there. He has really started liking playing on the mat and bouncy/swing. He is definitely a 5mth old in his readiness to get out of the bed. I had a few heated sessions with a couple doctors lately because I do not feel like he is getting the 100% best attention anymore. It feels like we are being forgotten on OT/PT at times and it doesn't seem like the doctors know what to do with him. This hospital is a great hospital for a micro premie or premature babies, however, for a baby like Kade who has a stomach problem and is truly over 5 mths old and not a premie, I am really beginning to think this is not the place we need to be. If it wouldn't be for Kenli, we would have high tailed it to Texas, Nebraska, or Pittsburg 3 mths ago. They are better for his condition, but if we moved him, someone would have to be with him 24/7 and I challenge someone to figure out a way how that is possible with a full time 4 year old that already missed her parents terribly. I just can't do that to her, but feel like I am slighting the other child in the course of this. It is such a hard hard spot to be in. I hate it.

I've had a lot harder time lately with something so simple as washing his clothes and bringing them back and forth to the hospital...I am SICK of bringing him clean laundry. I want him home, I don't want to bring him clothes. Something so small as cleaning his laundry and putting it in his drawer is something I can only dream of. The thought of him actually being home just doesn't even seem possible. Overall, he has not done badly, but he gains, he loses. He is on TPN, he is off TPN. He dumps, he tolerates. At what point does this madness stop?!? Sorry, I am going to stop ranting. I am just sooooo done lately! Done!

He now weighs 11.11. He has gone up and down back and forth this week. They put him back on the flagyl medicine that is helping his dumping and supposed to help him to gain weight. HIS LIP SURGERY IS SCHEDULED FOR THIS WEDNESDAY. Dr. Dean is doing it from BR. He will only be doing his lip. They will do his palate in New Orleans around a year...God willing. I am actually hoping they bump up his TPN over the next week, be he is not going to be able to eat his baby food by mouth and will, of course, lose weight, so I wanted him to not lose too much, but they make the calls, not me. the hardest part for Kade during this surgery will be that he cannot have his hands in his mouth or a pacifier. That is going to break his little heart!! Poor Angela (his nurse Wednesday and Thursday)... He is going to be horrible. I am going to be there 24/7 trying to help him through...I may wear my pajamas up there, because I have a rule that I don't leave him crying...I may never leave. They may have to restrain his little hands so he can't put his hands in his mouth... :(((( that is going to make me/him so sad!!

Well, I will try to keep everyone posted. Lucas will be going home tomorrow, God willing so please pray for him that he does all his breathing right so he can get out of this hospital!!!

Thanks for the thoughts and prayers!

Xoxo
G