Two Steps Forward One Step Back

Well there has been a lot going on with our little sweet pea these past few weeks. Lots of positives and one set back which the doctors are still trying to figure out. Last Wednesday Nora started having blood in her poop. 🙁 We took her to the doc right away and they did stool cultures and blood work, all the tests came back normal. Nora was still on her heavy duty antibiotics when the blood first appeared so the biggest speculation is that they were so harsh on her system that she developed colitis. Another speculation is that she has developed an allergy to her formula so since last Friday her feedings have been cut in half mixed with Pedialyte and some feedings have been all Pedialyte. The change in her diet hasn’t seemed to effect the blood in her stool so an allergy to the formula has pretty much been ruled out. There is still blood in her stool so her local doc ran more stool cultures and blood work on Monday, all of which came back normal again. Then yesterday we took her to Shands to see what they’re thoughts were. They pretty much ran the same stool and blood tests that had been done here and again, all came back normal. Since nothing showed up in the tests and she looks so good they decided not to admit her and want us to follow up with the Pediatric GI specialist at Shands in the next few days. Seeing blood in our sweet Nora’s poop doesn’t give us an easy feeling but at least she is happy and doesn’t appear to be having any discomfort. She’s been her usual content self and hasn’t ran any fever.

There have been a lot of positives though even with the mystery of her bloody stool. First and foremost Nora has continued to gain weight even though she’s only been getting half strength formula for almost a week now. She’s now in the double digits – she was 10 pounds even on Monday! We were expecting her to lose a little weight with the feeding change so we were very happy to see the weight gain. 🙂

Another good note is that her new IV port is working beautifully. She gets a new needle every week and doesn’t even have to feel the stick thanks to numbing cream. Having the port in her chest makes dressing her much easier and much more sterile from when it was in her arm. When the PICC line was in her arm we would have to disconnect the line every time we took her arm in and out of a sleeve which gave an opportunity for contamination. Here is a picture of Nora’s port.

The needle is under the little purple plastic device. The needle, tubing and plastic are all one piece. The plastic piece connects the needle to the IV tubing and the needle goes through her skin connecting to the port. Montana was brave enough to remove and insert the new needle on Monday with the home nurses supervision. (No, Montana hasn’t lost it and referring to himself in the third person, this is Sarah here). 🙂 I’m still a little nervous of sticking Nora’s chest with a needle even though she can’t feel it but I’ll work up the nerve soon. We both want to be as self-sufficient as possible so we don’t have to rely on other people for the daily care of Nora and will know what to do in an emergency situation.

One more bit of good news is that Nora got her G-tube replaced with a gastrostomy button this week. So now instead of Nora always having a long tube hanging out of her tummy she has a little button that we attach a feeding tube to only when she’s on continuous feedings. A button is a much more secure devise and will not pop out and need to be replaced as often as a G-tube. The button should last her about a year and will only need changing when she has out grown it. Below is a picture of her gastrostomy button and the G-tube so you can see a before and after.

And I saved the best for last, Nora has resumed bottle feedings again! She had her first bottle on Thursday, June 28 which was given to her by her sweet Aunt Jenn who came down from Kentucky to help out the week Nora was discharged from the hospital with the blood infection. It was her first bottle in over three weeks and she loved every drop. She’s only getting one bottle a day in replace of one G-tube feeding but she seems to be tolerating it very well. If it wasn’t for the blood in her poop we would have already bumped her up to two bottles a day but we don’t want change anything while she’s having this issue. Hopefully the blood will clear up soon and our little sweetie can have her feedings increased to catch up with her growing appetite and nutritional needs.

Thanks again to everyone for all of your love and support and for all of your sweet comments that have been posted on the blog. We love reading them and sharing news and pictures of our sweet little angel with all of you.