It's been a while since I last updated this blog. To be honest, not very much has happened that I felt warranted a post- which is a good thing. Not that it's been boring, by any stretch. Our days have been very full- with new developments, doctors appointments, daycare challenges. Well, let me back up and begin at the beginning.
My last posting, Sproglet was 5 months. She's now 9- almost 10- months old. It actually hurts to acknowledge that, because I love love LOVE having a baby in the house. She's just so damned adorable with all her babyness and whatnot, I just feel so bittersweet that she's getting older. But that's such a stupid thing to complain about so I'll stop that now.
When Sproglet was about a month old, a neurosurgeon at Children's Hospital decided that she would need to undergo an MRI at around six months of age. The reason? He was concerned that she may possess what's known as a "tethered spinal cord" which, for the sake of brevity, means that as she grows, she could have a lot of difficulty with movement, bladder control- important things like that. IF she does have a tethered cord, they would recommend surgery to correct it and hopefully head off those issues. However, the surgery would need to take place before the age of 12-13 months, as her growth would then start to impede any surgical intervention.
So it was good that we had the plan. MRI at 6-7 months, followed by possible surgery to correct the problem. Yeah, not so easy.
Babies need to be sedated for an MRI. It's a long test, probably 45 minutes, and the patient has to lie still the entire time. So Sproglet has to undergo anesthesia, which they made sure to inform me, can be quite risky for an infant. Not my favorite sentence in the world, but hey, it's a world renowned Children's Hospital, they know what they're doing and will do it safely.
They won't sedate an infant who has been ill during the three weeks prior to an MRI. So, luckily, we had the one infant in the world who could live through a cold New England weather, attend day care with other babies, have a brother who attends a public school, and never once get sick!
No wait, the opposite of that. Sproglet caught EVERY KNOWN BUG in the Boston area from September to January. Literally- if she wasn't sniffling,she was hacking up a lung, unable to sleep, miserable. And this lasted literally 5 months. Sick. For 5 months. In her pediatrician's office 2 times per week, concerned about pneumonia. Antibiotics, steroids.. Nothing would clear this stuff up. SO the MRI was rescheduled. And rescheduled again. And again.
We had been referred to a pulmonologist who suggested that Sproglet might be aspirating (choking on) her formula- the theory being that lungs that are constantly taking in bits of liquid are going to have a harder time clearing out a respiratory bug. After several feeding studies, including a barium x-ray, where they fed her radioactive fluids while watching on a screen to see whether liquid was in fact entering her lungs (spoiler, yup, it sure was!) we finally got a plan going to try thickened formula to see if that would improve things.
So we started adding oatmeal to her formula. Gross. I mean, it was like sludge. Imagine having to drink a smoothy made out of lukewarm oatmeal with expired milk (that's what her special Allergy formula smells like- oh yeah I forgot to mention someone, I forget who, but it was a doctor, changed her formula to a special non-dairy formula for some reason. Well, the reason was that they suspect she has a milk protein allergy. Anyway, that's all good now... Skin has cleared up a lot, less gas, all good things. Oh and insurance covers the cost which is good because this stuff is $50 per can) whenever you get hungry. Oh and the nipples on your bottles don't let any food through, so you're working your butt off but getting very little food, and meals take FOEVER.
So, predictably, she went on a mini hunger strike. Then, another feeding specialist recommended stopping the oatmeal and switching to a product called "Simply Thick", which is a gel that is added to formula, which is tasteless and gives a much more uniform "smoothie-like" texture. This was much more palatable and Sproglet ended her hunger strike.
Naively assuming we'd found the magic formula to a healthy baby who can actually eat her meals and not choke on them, we went online to purchase some of this stuff. We googled "Simply Thick" and were greeted with top hits saying things like "FDA warning about Simply Thick" and "Not for infants!" Ever so slightly alarmed, we read more about these warnings to learn that several babies had developed a condition called NEC (Necrotizing Enterocolitis) and died after having Simply Thick added to their diets- and the FDA had strong warnings against giving the stuff to infants under 12 months of age. Oh and the website for the actual product has the same warnings right on their page. A tad disconcerting.
Luckily, a quick call to her pediatrician reassured us that it was probably OK to continue giving her the product- that the babies who had gotten ill had been suffering from other ailments and had immature digestive systems that Sproglet didn't have. Still- there was a risk here that we had to assume was less than the risk of her choking on her formula.
We decided to continue with the Simply Thick and just keep a super close eye on her for any digestive weirdness. I would be lying though, if I said I didn't think of those parents who lost their babies every time I mix a bottle for her. There's risk associated with everything, I guess. I felt better knowing that her doctor, who'd known her from birth, was comfortable with the addition. (I love her doctor- she's brilliant and warm and amazing and totally puts up with me when I'm freaking out, answers all my questions and researches stuff she's not 100% familiar with.)
Onto the good news: since starting Simply Thick, Sproglet has developed a cold but was able to clear it out of her system relatively quickly, suggesting that the aspiration was the culprit for the constant respiratory infections. She's able to eat without choking, has good poops, less gas and acid, her excema has improved. It's overall a good decision.
So that brings us to today. And yes, the above paragraphs are 4.5 months worth of stuff condensed down. We are scheduled for our fifth MRI appointment (because she'd been sick for every other MRI we'd had scheduled) tomorrow morning. She can't eat after midnight tonight (which will be great because she likes to snack overnight, just like I do). I'm hoping and praying that we can finally get the test over and done with so we can see if there's surgery on our horizon.
Of course, I'm really nervous about her undergoing anesthesia tomorrow but again, she's at the top hospital for children in the world, they know how to take care of her. Still. She's so small and relies on me so much, and I won't be able to stay with her during the procedure. I hate the idea of leaving her. But we'll all be ok.
Next time, hopefully, I'll be able to report a normal spinal cord, no surgery in sight and a healthy, happily developing baby.
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