Juliana's Journey: A Holiday at Home and a Little Clarification

Finally Juliana will be spending a holiday away from the hospital. Every holiday since she was born has been spent in the hospital, so when we went to clinic yesterday I was almost positive that she would be admitted again. Juliana didn't sleep the whole way up to Boston so I knew she would be so cranky and she was up until the moment that her one of her doctors came down to the cafeteria to tell us that her labs came back normal and we could go home. I put her down in the stroller so that I could eat and she was just grinning from ear to ear. It was like night and day. I know she really doesn't understand what is going on but I think the stress that was lifted off my shoulders must have signalled something to her. She went to bed last night and woke up this morning with that same happy smiling face.

It will still be a couple of months till she is ready for surgery. She really needs to get over her respiratory illness and hopefully off oxygen before she will be ready for surgery. She is continuing to grow but at her own pace of course. The doctors would really like to see a boost in her weight gain. We really don't want to get her too far behind so once again we are going to increase the calories on the formula and the concentration on the TPN. I hope this works. It's really hard to tell people how old Juliana really is when she wears newborn clothes. For her actual age she should be almost twice her size in weight and for her adjusted age she is about 5 pounds shy of the average. Regardless of what the charts say though we are just happy she is growing. I am very positive that after her surgery she will start packing on the pounds.

For those of you who may not really understand, Juliana lost quite a bit of her intestines (about 22cm) 7 months ago. She had a disease where some of the tissues in her intestine had become necrotized (or dead). These tissues had to be removed and she was left with about 20-30 cm of intestines. When we eat we use the whole intestinal system to process foods and absorb the nutrients we need to live and grow. Juliana's intestine we left in three pieces. She uses a very small portion of her intestines to process her formula and the rest is unused at this time. She receives a very elemental formula which is what they call predigested. It is amino acid based so the stomach doesn't have to work as hard to break it down. Even with this predigested formula she is still only able to take a tiny amount at a time.

She has two ostomies, a jejunostomy and an ileostomy. Each ostomy is a part of the intestine where and opening was created and brought to the surface of the skin. We use an ostomy bag to collect waste from these openings. She doesn't poop from her rectum. When she has her surgery the ostomies will be reversed (reanostomsis). Everything will be put back together and she will have one continuous digestive tract. She will also get a G tube for feeding which is a tube that is placed into the stomach through an incision in the abdomen. We are very happy about that because she won't need her NG tube anymore. The NG tube is the yellow tube you see going up her nose. This tube goes up her nose and then down into her stomach. She loves to pull this tube out which means I get to fight with her to get it back in and make sure it's actually in her stomach. With the g tube we can avoid those battles and see her pretty face without all the tape.

I took some pictures so you can really see what she has going on. When she first had her surgery it was all very overwhelming but now it's pretty normal for us. I have to remember though that it's not normal to everyone else. I hope this makes things a little clearer.

We put protective barrier shields around the stomas and then stick the bags on. The one on the right is prolapsed and looks larger but the one on the left puts out the most stool. I ocassionally take pictures to monitor the conditions of her stomas and the skin around it. She has a little bit of skin breakdown on the right side of her left stoma which you can see above.