Saturday, December 3, 2022

The Trouble with Swallowing

Roman has been tasting baby foods and some of our dinner in the silicone feeders.  He was still thrusting his tongue out and most of the food would come with it so he hasn't actually been swallowing much of it.  He had really been rocking the bottle though since September, drinking four 8oz bottles (in less than 10 minutes!) a day.  There was a little dip in this during his illnesses, but not a bad one considering how much he went through.  He had a swallow study scheduled out for the day of Halloween and he seemed to be mostly back to normal so I kep the appointment, but kind of had a bad feeling about it.  It was supposed to be just a formality to confirm that he was not aspirating his milk or food into his lungs.  I tried to figure out where the bad feeling was coming from, and all I came up with was that he'd had such a major respiratory illness fairly recently and I was dreading getting to the appointment and him refusing to eat or drink and wasting my time.  I was not worried that he was aspirating. ever.  at.  all.


However, what was supposed to go smoothly and check off another box for him ended up going south.  After he has been drinking his bottle for a minute formula has been collecting near his epiglottis and then begins trickling into his trachea.  It was such a small amount.  He's never had pneumonia which would be expected from someone having this problem.  I was in shock as the Speech and Language Pathologist started giving me instructions on thickening his formula again.  No, this is not the worst news ever, but it was quite the blow to me.  It felt very much like a giant step backwards.  He had been on thickener before and weaned off it in June.  Even back then though he was never thickened to this level.  The first bottle I thickened after going home that day took him half an hour to finished.  And just like that I saw more than an hour of my day, every day, disappear for the foreseeable future.  That was the difference in total bottle time per day with the thickened formula.  He won't hold his bottle, and he has in the past been a little particular about who gives him his bottle.  He's in the second percentile so I can't just say, "Tough luck, Buddy," and make him accept a bottle from someone else because he has to gain weight and grow.  

I also had to wonder, "Was this an accurate test? Were the results skewed by his residual illness?"  I won't get answers to those questions because this test can only be done every six months because of x-ray exposure.  We have no choice, but to thicken and carry on.  It was a hard pill to swallow.  (Pun intended.)


I pretty much held in my tears until I got out of the hospital and then cried.  I cried a half a dozen times that day, and a lot in the days following.  I knew it was dumb and that we'd been through worse things, but it just hit me hard.  I talked to a local friend about ways to manage my time homeschooling better, I talked to my mom, and I decided that I was going to force myself to employ my tiny Army that I co-created and get some help.  I started having someone else put him to bed every night.  This is something that I love to do, but it does take up time and I do get to put him down for most of his naps.  I decided to make other people giving him bottles a goal and try it more often.  


 Things definitely improved when I implemented those small changes.  And like I suspected he did get faster at drinking the thickened bottle.  He since had to be switched to another formula and another kind of thickener, both for toddlers instead of babies, and we have once again slowed back down on drinking the bottles because this thickener made it even thicker.  Picture trying to suck a gel out of a bottle nipple.  It's ridiculous.  However, I know it will get better.  "This too shall pass," has always been my baby mantra.  I use it to encourage a new mama who thinks she will never sleep again or never again take a shower without interruptions.  These phases, though they may seem never ending, are so quickly passing.  Looks like I need to listen to my own advice now.