Kendall Update

This past week was another episode of hospital stays and doctor visits. Kendall had a G-Tube inserted on Thursday afternoon and was released from the hospital on Saturday morning. I stayed with her as she recovered from the surgery. The G-Tube is a tube that is used to feed her directly to her stomach. This replaced the NG tube that went down her nose.

After the surgery, she was in a lot of pain and needed some morphine to calm her down. She slept well through the night and woke up in some pain but in a good mood over all. Friday was spent getting her on a pattern that allowed her to take fluids regularly through the tube and adjust to the new way of eating. She moved along well according to the doctors requirements and she was able to leave Saturday morning. She was 10 lbs, 5oz when we were discharged.

So, now the plan is to find a pattern that allows her to maximize her food intake without throwing anything up. The first day back, she did throw up a few ounces, but has been good ever since. It is tough on us as only 2 months ago, she was eating on her own at a level that is more than what she is taking right now. We are baffled at why this is the case and still have some questions to be answered. Every test so far has come back negative. We thought that maybe it was that her system wasn't absorbing the way it should, but the biopsy came back normal. We thought maybe her stomach was too small and the doctor said that the stomach expands according to the amount of food she eats and that it is unlikely that this is a problem. We have a number of follow ups and additional consultations with therapists and specialists and will continue to search for answers. In the mean time, our focus is on providing a positive experience for her at every feeding. The times in the past that were traumatic for her may have given her an aversion to eating and we have to do our best to reverse that negative experience she associates with eating.

On a positive note, she continues to develop and seems to be more active as she takes in more food. She is very alert and engages with us quite a bit more than she has in the past. Her strength has increased and her motor skills are developing by the day. She knows that her hands can grab stuff and loves putting her feet up straight in the air.

She is so amazing and we love the great things she brings to our life. Outside of not wanting to eat, she is the best baby we've ever been around. We still can't get enough of her....

Update

What a crazy few months it has been. Kendall continues to be this amazing child that brings us so much joy. She has progressed with her motor skills and is developing strength in her legs, arms and core. She recently found her hands and watches them for hours on end wondering how she makes those little fingers move. It is very cool.

The down side to the last few months has been her lack of growth. She isn't growing nearly at the rate she is supposed to. At 6 months, she weighed in at 9 lbs, 2 oz. And just last week, 6 weeks later, tipped the scales at a whopping 9 lbs, 12 oz. Only a 10 oz gain in 6 weeks. We were surprised at such a small weight gain because we have been force-feeding her every day, including solids and larger portions. It was so disheartening to see such little progress. We decided that we needed to do something drastic to get to the bottom of this puzzle.

Currently I am writing this from a hospital room at Lutheran General. It all started about 2 weeks ago when Kendall got an upper GI, which came back normal. Cathy then arranged for early intervention, which means that a bunch of people come out to assess Kendall and determine whether she qualifies for help in certain therapeutic areas. The meeting took place 1 week ago today with 7 people coming to the house for about 2 hours. They all agreed (within their respective specialty) that she would need therapy of many kinds to help her catch up to other kids her age. We haven't ruled out some of the more severe issues that she may end up being diagnosed with, but we are certain that most of these potential issues are not part of her problem. It is all stemming from her lack of food intake.

The day after early intervention gave their assessment, Kendall decided that she didn't want to eat and only took in a few ounces over most of the day. Cathy brought her in to the pediatrician and the pediatrician said that we should start performing some tests to start ruling out certain things. From the doctors office, we took her to the hospital and she got a CT Scan of her brain. That came back normal. Cathy then pulled as many strings as possible to get Kendall in to see a neurologist and a GI specialist. Both of those visits happened this past Tuesday. The GI doc said that we need to get a feeding tube put into her and put the order in for this surgery.

So, we brought her to the hospital today believing that she will get an endoscopy and a feeding tube inserted. When we got here, only the endoscopy was scheduled. Our hearts sank and disappointment set in. It's been such a stressful thing trying to get her to eat; even more stressful force feeding a crying baby.

So, I am here at the hospital staying over night with her as they let her recover from the endoscopy, which came out normal. We are told that she will get a tube inserted that will go straight to her stomach from a location right by her belly button. Good chances that she will have this in for over a year, or until she starts eating at the level she is supposed to. This will happen next week hopefully. In the meanwhile, we will continue to feed her what she wants and try to be patient.

Hopefully, the next posting will bring bear great news on her progress and fattening up...