Well it is hard to know where to begin this post (warning it is a long one). A lot has happened in the last two weeks. Josie has been struggling to eat and started losing weight a couple of weeks ago. She finally progressed to eating just a few ounces of formula a day and drinking mainly pedialyte. We visited the pediatrician on Monday and he was kind of at a loss as to what the next step would be so he suggested we visit the feeding clinic at Children's Mercy. Tuesday morning bright and early we headed to KC for the feeding clinic visit and went ahead and packed for a few days in case we ended up staying. Of course, that turned out to be a good idea. At the feeding clinic we saw an occupational therapist and a nutritionist. They visited with us for a long time about Josie's history and eating situation, then watched her attempt to drink from a bottle. We felt a little better after they said we had been doing exactly what we needed to, but were very concerned about Josie's weight loss and the fact that she wasn't eating enough formula to even keep herself hydrated. Their suggestion was to thicken her formula and give it another few days mainly to see if thickening it would slow down her reflux or admit her into the hospital for a feeding tube. Chad and I decided we couldn't see her getting any better without some assistance with her nutrition so we all agreed that admitting her was the best option. It was a very good decision. Josie was in the hospital from Tuesday to Friday evening and we were able to learn a lot about what is causing her eating issues. When we checked in on Tuesday they inserted a feeding tube allowing Josie to have her first full meal of formula in over a week. We then met with the doctor and developed a game plan for the next steps. On Wednesday they conducted a swallow test where Josie drank barium with different levels of thickness to see how she sucks and swallows. The test showed that she was aspirating formula at its normal consistency. This was a very important finding telling us that she is actually getting formula in her lungs. The good news was when they gave her barium that was thickened she did not aspirate. So on Thursday several ear, nose and throat (ENT) doctors saw Josie and put a camera down her nose to see if there was damage from reflux and examined her voice box. The ENT doctors diagnosed her with moderate to severe laryngomalacia which is basically a flimsy voice box. This is allowing the aspirations to occur and also causing Josie's odd breathing sounds. They also noticed that there was a lot of swelling around the vocal cords which lead them to believe that she has fairly significant reflux. These were all good findings in that we now know what is causing her to not want to eat and these things should get better as she gets older without surgery. There is a surgery they can do to trim some of the swelling and allow the vocal cords to close more efficiently but it is not good to do when active reflux is occurring. The acid from the reflux can cause scar tissue to form. Once ENT arrived at their conclusion the doctors requested a gastrointestinal specialist to look at her. He thought that she wasn't in need of surgery to address the reflux but our best course of action was to put her on a high dose of medication to reduce the acid in her stomach. This would allow her esophagus to heal and hopefully make eating more comfortable. He estimated that she would need to feeding tube for about 3 months.
While we were in the hospital we also saw a physical therapist because we have been concerned with her head control. The PT diagnosed her with a common muscle issue where the muscles on one side of the neck are stronger than the other. This prevents her from developing good head control and causes her to often lean her head to one side. The good news is that it wasn't a developmental delay and can be fixed with physical therapy.
Today we are home and Josie has a feeding tube through her nose that allows us to feed her when she doesn't want to drink from a bottle. Every four hours we try to feed her from the bottle and whatever she doesn't take we run through the tube. We basically hook her up to a pump that pumps the formula over a period of time. It has made feeding sessions a little more complicated but Chad and I are so relieved that we can make sure she is getting the nutrients she needs everyday. The main goal right now is for her to gain weight. With the recent struggles Josie has fallen into the 0%tile.
Sooooooo we are on the road to recovery and have now added an occupational therapist, physical therapist, nutritionist, ear, nose, and throat doctor, and GI specialist to Josie's list of physicians. I'm thinking I made need an assistant part time to manage all the appointments:) We are so fortunate to have access to a place like Children's Mercy. The doctors and nurses are really unbelievable. They are not only good at their jobs but very caring and compassionate people.
My mom always teases me about my writing style on the blog saying it sounds a lot like my dissertation:) I tend to write just the facts mainly to document Josie's first year for her to go back and read someday. I do want to say that through all of the struggles we could not have done it without the help from our family and well wishes. Chad and I did not realize the journey we were beginning in those first few days in the NICU, but this experience has only brought us closer. I can't imagine doing this without him by my side. As Chad has said, "when we are our old and Josie is grown you sure can't look back and say we didn't do a little parenting".
