Summer has been doing well. A couple weeks ago, they took her off the Lipids and it has been great with one less wire to trip over! Here she is modeling her attachments...
Before: With two IV pumps, the Enternal (feeding tube) pump, and oxygen tank we have quite a load to carry
After: One pump gone, sure lightens the load :)
As of last week she weighed in at 8 pounds, 14 ounces. Though she has been gaining weight each week, it is only about half as much as they would like to see her gain. She has been gaining about 10-11 grams a day...they want her to gain about 25-30...that's one ounce per day! We discussed maybe changing her food recipe and/or TPN. The nutritionist has changed the "recipe" for her TPN each week trying to get her to a place she needs to be. At this point, her lab work has been great, but she is lacking enough calories to gain. The new recipe has double the calories than the previous week and we have stayed at 27 ML's of breast milk per hour through her NG tube. We discussed the possibility of having to introduce formula to help with the digestion, but for now we are waiting to see what the increased IV calories will do for her...
The not so portable version of our baby....complete with her own R2D2 in the corner of her room
As far as lab work goes, Summer's bilirubin has gone down to 6! It was as high as 12 a few weeks ago, went to 9.6, 8, 7.7, now 6. She is looking a little less yellow, but still not pink enough to match her room :) I think I might ask Santa for a pink baby :) Ok, no replacement, just make the one we have pink :) We have to be careful what we ask for!!
This Tues. is our regular clinic visit day...in addition to the GI clinic, we are meeting with the Ocupational therapist and having a swallow study done. I have been giving Summer a bottle with her 1/2 of an ounce 4 times a day instead of a binky trainer. I have also nursed her a few times. It is nice to have a somewhat "real" baby :)
Little Tom likes to help keep Summer happy...an ingenious way to keep the binky in. My hubby says he would have used duct tape, ha ha!
