As promised, I'm ready to share some exciting (to put it mildly) test results for Avery that, honestly, I had NOT been anticipating.
First, let me give you some history and a little biology...
Avery was born with syndromic craniosynostosis (blah, blah, blah, you know already, right??). The premature fusion of her skull bones set off a chain reaction of structural havoc in all nearby areas, including, but not limited to, her nasal passages. Her passages are so tiny that the tiniest medical scope cannot visual what the base of her nose, the choana, looks like. We theorize that her choana is mostly blocked by bone - a condition known as choanal stenosis (or "atresia" if the passages are blocked completely).
Because of this condition, Avery was given a feeding tube, since a baby needs to be able to breathe easily through their nose in order to peacefully eat (Avery was unequivocally unable to do so, though we hoped that she might learn).
There are many neurological or environmental reasons for what occurred next, so I can't say for sure what triggered it, but Avery developed a severe oral aversion. Despite all my efforts, she militantly denied any attention to her face, gagging and wrecking if I even brushed her cheek. I practice every therapy and technique to desensitize her, but nothing worked and she vomited so routinely that I backed off the oral therapy to give her tummy a rest (This did not change how much she vomited, however, which was upwards of 10 times per day - I can only liken it to having a child with norovirus, every day, for 2+ years).
All of this had left Avery with significant muscle weakness in her face and mouth and her burgeoning speaking abilities were being hampered by poor tongue awareness/placement. After our cranial vault remodeling surgery in April 2017, Avery began to make serious strides. First, her vomiting ceased almost overnight (likely due to her brain finally having all the room it needed and unofficially decompressing her Chiari malformation as a result). She began to show interest in foods and would even accept small tastes, or licks, of food. I began to give her a few bites of yogurt each day, though very sparingly. We had never conducted a proper swallow study on her, so I couldn't be sure of where the food could be TRAVELING after each bite.
Aspiration is very common in children with tracheostomies and almost every neurological condition, so swallowing safely is of the upmost importance. Aspiration, food or drink traveling into the lungs, can lead to a whole host of serious problems.
Because of Avery's need interest, we finally had a swallow study (child drinks barium while a series of x-rays follow the path of the food to see where it goes, in very layman's terms LOL). Her study showed trace aspiration after every other bite, with every texture or thickness of food or drink.
I wasn't surprised or terribly upset, since Avery hadn't had much experience with food and likely hadn't built up the stamina to consistently swallow well. (We were not able to try liquids through a straw because Avery was still averse to straws). I was advised to still feed her once or twice a day, but to limit the volume of food. I was to use food as therapy and not so much for nutrition.
Fast forward to Tuesday of this week, we repeated Avery's swallow study. She had been begging for food and eating multiple times a day, so I was anxious to see if I could begin increasing volume and frequency in order to limit how often we were feeding her through her feeding tube. I was also interested in how she would handle liquids, since a month before, she had asked for "cup", "water" and proceeded to drink from a straw all on her own. Thin liquids are most likely to be aspirated, so I had only been letting her try sips of water, believing that the swallow study would tell us that if we thickened her liquids, she would be fine to drink.
I was blown away by what we found.
Avery showed NO signs of aspiration with any texture or consistency. Even thin, straight juice flowed seamlessly from her mouth to her stomach - not even residue slipped into her trachea. She is able to protect her airway! We were given full clearance to let her eat as much or as often as she would like (supplementing with tube feeds for whatever nutrition she's missing at the end of the day) and even allow her to drink whatever she would like in her cup.
I could cry. Like, the happiest tears.
I had assumed I would be thickening and measuring and all that jazz for years to come, but Avery decided she was ready to experience a bit of normalcy and now scoots around my house with a mixture of apple juice and water in a straw sippy cup all day long (not even a special cup - she decided she liked the cups I use for Lolly! 😂)
We are now in the stage of weaning Avery from her g-tube. I can't believe I even get to type those words. I'm so grateful and surprised by the progress she's made after making ABSOLUTELY NO PROGRESS (in the feeding department) for 2 whole years.
This is also good news regarding Avery's brain. A brain or, more specifically, brain stem under great stress would not allow a child to coordinate suck and safe swallow, or bite and safe swallow, so this means that Avery's BRAIN is doing well also - which is, of course, the best news I could ask for. A brain that's improving is a brain that may outgrow its central apnea and may, one day, outgrow its need for a ventilator.
Holding onto to hope about that last one. ☝🏽
So often, I've gauged my future on how things were going in my present. For all my laboring, my hands were still coming up empty. I questioned the process. Blamed myself that Avery wasn't making strides. Felt defeated when the progress was so slow that change was completely invisible to me.
I wasted so much mental energy feverishly researching where I had gone so wrong that she still didn't want to eat at 2 years old... all for nothing. Avery wasn't ready because Avery knew she couldn't proceed safely! Her survival instincts told her that food was danger and liquids could pollute her lungs. She was completely right.
I could have relaxed a little and followed her lead a little less anxiously. The right thing will unfold at the right time. No amount of effort or worry was going to change what God had slowly, masterfully been orchestrating in her little life since the moment He released her into this crazy world.
So, if you're feeling defeated by too little return from so much effort, don't give up. Often the most powerful victories in our life unfold painfully slowly. So slowly that we believe they may not unfold at all. We believe God is holding out on us, punishing us, telling us, by default, that we're not good enough, smart enough, fast enough. But, all of that just isn't true. What's true is that His plan defies all earthly logic. His plans seem like zigzags and twisted turns to us, but His plans always, ALWAYS turn out as GOOD for those who love Him.
He has not forgotten you and He is not holding out on you.