As there will definitely be highs and lows with having a child with special needs, today was definitely a low point. This afternoon Cohen had a speech follow-up appointment to see how he is doing with feedings by mouth. Since about two weeks ago when we did a swallow study that determined he was aspirating some of the formula from his bottle feeds, Cohen was no longer safe to be fed by mouth for awhile. When the bronchotomy ruled out any hidden clefts or narrow airways, we were relieved to hear that he would be able to eventually eat by mouth. We were told that the good news was that he would just need to improve his breathing and hopefully get control of his acid reflux. So with everything on the up and up, while driving to the appointment today I was convinced that she would tell me he would be safe enough to begin taking small quantities by mouth. But that was far from the truth.
We talked about his breathing and how it has been improving since our discharge, but still is rather spastic and has a mind of its own. There are some times in the day where he seems to breathe like a normal baby, sometimes breathing very quickly but quietly, sometimes very slowly but loudly. He can have a variety of breathing patterns without even moving or eating. The speech therapist was nervous about this because we don't want to set him up for failure or risk of aspiration. She watched him take some "tastes" on his pacifier of formula, where he was given a few drops of formula and then she would watch his sucking patterns and breathing patterns simultaneously. What she noticed was that he was sucking a few times to get the formula, then would tire and need to catch his breath so then he would stop sucking and hold his breath for a short time. It seems he is still working on learning how to swallow and coordinate all of the moving pieces to make it comfortable and safe for him to eat. Based on what she saw, she didn't feel comfortable letting him eat by mouth quite yet.
Of course I was disappointed but also comfortable with her decision because I also saw how hard he was having to work to just take a few drops off of his pacifier. So her plan was to see him in a few more weeks and hopefully with his weight gain and improvement of his meds for his reflux, he will be set-up for success!
In the back of my mind is always the question as to whether this child will ever eat by mouth! I'm not sure why this is such a big worry of mine when we have much bigger things to worry about, like open heart surgery. I think it's because it is such a challenge for him, yet is something that for most people we take for granted. Being able to coordinate swallowing and breathing to eat and drink is something that is second nature to everyone. Being hooked up to a machine pumping formula into his belly is something that seems almost alien-like to me and unnatural. The doctors even said that once his g-tube was surgically implanted there may be a chance that his stomach creates this tissue trying to push it out because it's a foreign object that is not meant to be there. That's how I feel about my little guy. Thoughts continuously race through my mind: When will he be able to eat? Will he be able to eat? How many more times do I need to prep his iv pole, even though we've only been doing this for about a week now. I asked her these questions. She said that she was confident he would be able to take some food by mouth but that she couldn't guarantee that he would ever be successful with taking ALL amounts by mouth. These words were devastating to me.
Rushes of emotion came over me as I walked out of the doctor's appointment and headed to the cafeteria. I brought his pump and bag filled with formula in a travel backpack so that I could feed him before leaving the hospital. I grabbed my lunch and figured I would feed him and hook-him up to the feed while I ate my lunch. As I was organizing all of the supplies and trying to set up this crazy contraption in the cafeteria I began to feel that people were watching me, judging me, judging him, and judging the situation. Not that they were looking at us as if we were weird but curious as to what was going on. Where was his bottle? Why was this baby having a tube hooked up to his stomach? They were questioning the unknown, what they weren't generally accustomed to and I couldn't blame them. I was that person before. I have subconsciously and honestly sometimes consciously judged people for looking different or acting differently. I would often find myself staring at them because I was curious about why and the unknown, rather than thinking that they were different and it was wrong. But I found myself noticing their eyes on us and it made me very uncomfortable. I think I was uncomfortable for a variety of reasons, but one being that I almost felt ashamed. That thought was only in my mind for a couple of hours after coming home from the hospital till I realized I should not and will not be ashamed of him because there is no reason to be. He doesn't know any better and this is just what he needs right now to survive and grow. He didn't choose this for himself but this is "the hand that was dealt to us and to him" as Ryan told me trying to comfort me. Those are tough words to hear but realistic words. There is nothing that we can change about the situation but we can only hope that he will improve on his own time. He just needs the time to do it!
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