Losing Weight

Juliana has been losing weight over the last couple of months. In April we had such a huge jump in weight and we were all very excited. We dropped down to 6 nights of PN and one night of hydration. Went back to clinic in June and she had lost 500 grams which is about a pound. So the plan going forward was to adjust her PN for increased calories and still continue with 6 nights per week.



We were due for a weight check and labs at the end of the week but unfortunatley needed a line repair so we ended up in the ER. They weighed her and much to my surprise she was down another 300 grams (about 10oz). I called in to the CAIR clinic to let them know and see if they wanted to add on the 7th night of PN and they don't. I am not sure what the reason is but they want to wait and see how she looks on Friday which is probably not going to be any better. She missed a whole night of PN and Omegaven due to the line break and was looking very dehdrated as a result. We put her back on as soon as we could but at half rate because of the repair. Until the line is completely dry we can't infuse too fast. We infused over 24 hours instead of 12 to ensure the she got the full amount of her PN. Tonight she will be back on her regular schedule but I don't think her weight is going to be back up and I am not liking the "wait and see" idea at all. I do trust that they will make the right decision for Juliana but I am on the edge of my seat for now.



I understand that these are the ups and downs of having short gut but having never dealt with a weight loss issue I am at a real loss. I cannot give her anymore than she is already getting enterally (through the feeding tube) because of her short gut but maybe we could find some way to increase her calories. I am hoping that we can turn this around real soon and get back on the growth charts.

Bath Time!

We are back from Oley and had a wonderful time in Saratoga Springs. The best part was being able to connect with so many families. Even though we may not share the exact same diagnosis alot of what we deal with day to day is the same. It was also nice to see our care team in Boston in attendance as well. I did miss most of the main sessions but they were recorded so I can catch up on what I missed. The breakout afternoon sessions were the most valuable to me.



Overall the most exciting thing we discovered is that Juliana's bags will hold up in the bath. We were always told not to get them wet or they will fall right off. For the last two years Juliana has been sponged bathed on a waterproof pad on the floor with multiple containers of water for washing and rinsing. It's not the easiest way to clean a baby but it worked for us. She would occassionally get a bath when the bags had leaked and she was due for a dressing change. That has probably happened only a few times and she would get so upset it seemed not worth it. Now that we know we will be living in ostomy world for at least another year, it seems appropriate for Juliana to experience bath time on a regular basis. After talking with a fellow ostomate we found that the bags could get wet without the risk of losing a perfectly good bag. I still expected to need to change her bags following the bath so I had all the materials ready to go. Well the bags didn't leak for two days which is a record for us.



We bought her some new bath toys in celebration and are now on a schedule that revolves around dressing and cap changes rather than dressing, cap and ostomy bag changes. Much easier to plan this way and is wonderful for Juliana's development. She is at the age where bath time is fun and she does really enjoy it.