Made of Gray

Christmas came a little early.....

Holly D Gray7 Comments

Last night Caleigh accomplished a huge milestone. It was our first night OFF TPN! That's right, as long as Caleigh stays hydrated... we are done with TPN. We have been waiting for this day since she was born, almost 15 months ago. I can honestly say that there were many days that we thought Caleigh would need TPN forever. It's been 5 months and a few days since Caleigh had the STEP procedure and she is a great statistic for the surgery. When we decided to do the STEP our hope was for increased enteral feeds and less TPN. Since it is a fairly new surgery the statistics out there were few and far between. We only had hopes and dreams of today. TPN does horrible things to a persons body. We were amazed by Caleigh's sudden 'healing' from her liver damage. It bought her the time she needed to learn how to take more food in after doing the STEP surgery. We are so thankful that we have had IV nutrition, but it is such a blessing to let it go of the necessary evil.

Yesterday, we went to see our GI and once again Caleigh had gained quite a bit of weight. He said 'that's it, we are stopping it.' There was a few 'fluffy' comments and then we sat down to make plans.

We are going to keep Caleigh's central line for awhile just as a precaution, but when it is clear that she won't need it, we will schedule surgery to have it removed. It happens often that TPN kids need fluid to stay hydrated because they are so used to constantly having a fluid balance. So we are waiting to see if that's the case. Right now we are giving plenty of pedialyte in between feedings to try to avoid that scenario.

Caleigh did really well with the change last night. She woke up right before her 4am feeding and was hungry. As soon as the pump came on she fell back asleep. I'm hoping that losing the TPN every night will help her sleep better. She won't be filling her diapers near as much as before. This morning she woke up a bit early, but she was in a great mood. Usually she screams till I put her on the couch, help her find her hand to chew on and turn on Little Einsteins. This morning Caleigh was all smiles as soon as I picked her up.

We cut Caleigh's formula back to 20 calorie and we are anticipating her to lose a few pounds due to the decrease in calories and discontinuing TPN. Right now she is about 24 lbs and if she gets down to about 22 and stays there for awhile that would be ideal. Caleigh has gained so much weight that we had a to buy a new car seat, she outgrew the weight limit on her old one. I never thought we would be trying to make Caleigh lose weight. A little irony, I guess.

Time will only tell, but we are praying for this new trend to stick. If this wasn't RSV/FLU season we would throw a big party for the occasion....maybe in the spring.

At this point I am going to enjoy more parent time with Caleigh. Another, super, wonderful revelation is that we will have our dinning room back to normal very soon!

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