Our new normal is difficult to get used to! All of Lucy’s life has been focused on getting her to eat more and now we are trying to take the focus off of eating orally. In some ways her lack of appetite has been a blessing, she is not interested in eating a variety of foods, in fact she is only really interested in nursing or eating Cheerios. It amazes us how she has no interest in eating the foods we eat. When we sit down as a family for meal time we always put Lucy in her highchair and offer her Cheerios. She used to eat them by the fist full, but now she eats one at a time very often using her binky to suck them down. At first she was mad at us for only giving her one at a time, she wanted to shove them in her mouth the way she was used to, but she quickly learned that she could not swallow even two at a time. We are not sure why she has so suddenly declined, regression is something that we have seen in Lucy at times when she was dealing with some sort of illness, but she always seemed to come back to “baseline” soon after feeling better. In many ways she is back to the Lucy we know and love so much, but there are several things that we have noticed that are not better; her swallowing issues are one, and her balance is another. She has been tipping over a lot recently, she has also been spending a lot more time laying on her back, I think that these two go hand in hand.
We had an appointment last Friday with her GI doctor and nutritionist. It was difficult hearing the new plan for Lucy, I just haven’t accepted the fact that she is now 100% tube fed. Lucy’s nutritionist understands how difficult this change is on us, she sat and cried with me while we witnessed Lucy have a total meltdown because she wanted to nurse so badly. Not being able to nurse her when she seeks it out for comfort is the most heart breaking, it goes against my mothering instinct. We are experiencing several obstacles in regards to feeding her. Lucy’s rate at which she is fed needs to increase in order to meet her calorie needs, we are having a he** of a time getting her to tolerate an increase in her feeding rate. We are moving very slowly with this, even so we are noticing that she is burping, gagging, and even throwing up. These are all things we do not want her to do, throwing up is very bad because of her aspiration issues. Her GI doctor believes that Lucy suffers from acid reflux, and now that her upper GI has ruled out any sort of food allergy issues he has prescribed meds for her reflux. All of us are hoping that if we can control her reflux then maybe this might help her rate issues, although her delayed gastric emptying is still a major issue. There is talk of converting her G tube to a GJ tube. This means that instead of her tube going into her stomach we would instead place the tube into the opening of the intestine. Doing this might allow us to increase the rate at which she is fed and decreasing the risk of her vomiting and aspirating. I think we all feel that we need to give Lucy some time to adjust to her new hardware and than reevaluate in a few weeks to see how she is doing. I am not ready to make a decision about this just yet, but knowing we have these options is strangely comforting.
As for repeating a swallow study we are still waiting to schedule this. I spoke with a speech pathologist at DuPont on Thursday about Lucy. She was kind and compassionate but not quite as optimistic as I was hoping she would be.
P.S. The last photo is of Lucy signing “MORE”! We are so proud of her!