Up to 24ml/hr, 20ml bottle 3 times a day and still 3 TPN

Today was a good day. We ate lunch at my moms, then FINALLY opened presents with Hunter, Ruth & Aunt Jamie.  Hunter and Kenli rode their 4-wheelers for a while and had a blast.  Today was a true reminder of just how much they are like brother and sister.  And, Kenli being the older "sister" bossed him around all day! It was quite funny to see him react, and even one time telling her he was gonna take his shoe off and whip her with it! LOL!!!!

Josh and I finally made it to the hospital around 4:30.  Kade was wide awake.  His nurse today was Desiree, who is so sweet.  His bag had done really well all day and right when we decided to give him his tummy time on his mat, it gave way.  Bag broke, made a mess everywhere and he had to get a bath....he was NOT happy.  One funny thing was, (and this is the second time he did it, but I thought it was a fluke the first time) he rolled over when he was on his mat.  HE ROLLED OVER!! And he is supposed to have such low muscle tone with Downs. This child is proving people wrong left and right! Also, we Dr. Lindsey called me today for my update, she said twice how proud she was of his progress.  The other doctor said the same this yesterday.  He is making good progress for sure!

We never did see the surgeon about his reconnection surgery.  I HOPE we will see her tomorrow...I would like to know the plan of action.  As it is, today, the nurse told me that one of the doctors said we might get home by the end of the month...I just acted like I didn't here her. There is NO WAY! He has to have three surgeries at least before he goes home (reconnection, broviac removal, & G-tube). And each time that happens, he has to stop and restart feeds...ugh.  I say the BEST case is end of February.  That is my prediction, but then again, I am not a doctor....but I think they were jumping the gun with the "H" word.

Tomorrow, we do his Monday TPN blood work. Last week his crit was low (22.8) and his liver levels were elevated, but nothing too too bad to be alarmed about. I am worried about these, because he still looks pale, but with a yellow tint.  I am just praying they come out ok.  Kade has been on TPN for 6 weeks straight. They warned us that around 6-8 weeks, we may start seeing liver issues.  I am trying to remain positive, but poor baby has horrible luck!!

Today also, he lost weight. He is back to 8.15.  I guess he will flucuate. I just wish he would gain gain gain! He needs to be as chunky as we can get him (SUCH a different story than with Child #1).  Tolerating feeds and gaining weight is detrimental to his growth, hydration, and health.

Please continue to pray pray pray. I will update as soon as the blood work comes in.  There are so many decisions we have to make right now. Please pray Josh and I make the right ones. I don't think we have ever been this stressed before in our lives.  Big decisions to make and I refuse to sacrifice certain things...Kenli's school and Kenli's normal activities being one...ugh....so tough...

Thanks so much!

xoxo
G