Friday, May 22, 2009

Update.

We have been at Children's for 5 days now. It seems like an eternity. Libby is such a sweet happy baby, she is a joy to be with and loves to smile at everyone, especially the doctors, and little boys. I think she really misses her brothers and sisters.
I feel so very blessed with the generosity that is being poured on our family right now. I know it is especially hard on Sean. Today when I was trying to give him an update on the phone I could hardly get an word in edge wise. I heard, "Whose helmet is in the bathroom? Go put it away." "I know I did not brush some body's teeth, whose are not brushed?" "Don't touch that" "Pick it up." "Clear the table." "Clear the table." "Clear the table."
I won't tell you whose job is table this week but I bet you could guess.
I was exasperated today because we decided to try fortifying the breast milk with a high calorie formula. That is so that she won't have to consume as much fluid ounces to get the calories that she needs. But after rounds and discussion with the OT/PT and the Dietitian it literally took 9 hours to get the orders written so that I could get the fortification! That is 3 feedings that could have occurred with the supplement. That is 9 hours sooner I could have possibly been sent home. UGH
Liberty's intake was averaging 60ml per feeding when we were admitted and today they were up to an average of 110ml per feed. The goal is 160ml each time. I am fervently praying that they will let us go home and continue what we are doing and slowly increasing her intake.
The doctor's are really wanting to put a NG tube (Nasal-Gastric) which goes in her nose and to her stomach. I am desperately trying to avoid that. I feel like it would not teach her to eat, and she would get even lazier as far as recognizing her hunger cues (there would not be any) and it would be harder to maintain at home. Not to mention long term effects on her desire to eat. She enjoys nursing (a lot) but she just is not very effective at it, and she is too polite to complain when she does not get enough.
I have been pumping and taking Fenugreek and Blessed Thistle so my milk production and supply is definitely not the issue.
Again, we do not have definite answers and do not even have a projection of when we get to go home. Fortunately, I have learned my way around the hospital and discovered the beautiful path to walk on when I can.

2 comments:

Stacy said...

I completely get your desire to just want to be AT HOME, and do all of this AT HOME!

Praying you'll get there soon! That the doctors will release you just as soon as they possibly can so that you can be home.

Love to you and your sweet girl,
~Stacy

schmittfamily4 said...

Praying for you and your family!