Please pardon the overtly flowery title of this post. It's just what I'm feeling today.
I know most moms feel this way about their babies. I certainly feel this way about my older child too.
But you know, sometimes you have one of those perfect moments and the clarity of your love sharpens and comes into focus.
Last night Sproggy and I were laying in my bed, I was scrolling through some Facebook postings, keeping an eye on the Super Bowl highlights while she laid next to me took turns babbling and taking some sips from her bottle. It was clear she really wanted my attention, to play and have fun, but knowing it was way past her bedtime, I pretty much ignored all her attempts to engage with me.
Then, slowly, the babbling slowed and her eyes started closing slowly. I purposefully avoided eye contact with her, propped on a pillow right next to mine.
After a few minutes of quiet, with just her lullabyes playing softly on my phone, I turned to check if she was asleep. Her eyelids were nearly closed but her eyes were shifted, fixed on my face, staring at me, almost as if using The Force to get my attention on her. I couldn't help but start to laugh. Then she slowly started to smile. I laughed more. She smiled more. Repeat. I said "My God, you have my heart forever."
Now, that language is NOT typical of me. I'm not poetic, I'm not flowery in my language at all. These words just came from a place in me that only my kids can tap into. They just sometimes bubble up without warning.
I'm finally coming around to the understanding that, even if she's not typical, she's still somehow perfect. I'm like that scene in Love Actually, where Rick Grimes holds up the cue cards to Keira Knightly which say "To me, you are perfect." That's how I feel about her. I mean, maybe these people who have intellectual disabilities have a much better understanding of how life is SUPPOSED to be lived. Sproglet only knows how to love. Even when her big brother is crushing her with one of his monster hugs, or shrieking in her face, she looks back at him with the most adoring smile.
And she does the same with everyone else too. No one is safe from one of her gushing squeals, which her older cousin told me make her sound like a velociraptor. She lives to connect with and make others smile. What a noble gift to be given. It's like looking at a totally pure soul, innocent, sweet and, I don't know... Close to God, I guess? She may make me believe that people are brought into our lives for a reason.
Monday, February 6, 2017
Thursday, February 2, 2017
MRI = "Miserably Ravenous Infant"
Well alright! We're finally on the other side of Sproglet's first major test- I say "major" because it's the first we've done that has required sedation under general anesthetic. We've done neuro studies that required sleep deprivation, and feeding studies that required her to skip some meals, but this MRI was the first one we'd need to accept the risks associated with sedation.
To that end, Children's Hospital is (rightfully) quite strict about the safety of babies undergoing sedation. They would not sedate Sproglet if she showed even a hint of a respiratory infection- which is why we had to reschedule the test five times. Every time we arrived at the scheduled MRI date, she would develop a fever or a head cold or a cough. Pretty difficult to avoid germs during a Boston winter, after all, and keeping her in a bubble was not an option. Plus, her pulmonologist believed that she was aspirating her formula, which was exacerbating all those chest infections, so getting her feeding under control was imperitive before the MRI.
Which brings me to the morning of the MRI. We'd followed the strict feeding schedule that Children's had given us (no formula after 4am, and only water until 8am), but what no one had taken into account was the fact that Sproggy's liquids are now thickened. The product that we use to thicken her formula has a food additive which, turns out, alters her digestion. Long story short, once the anesthesiologist found out I'd added the thickener to her water that morning, he refused to anesthetize her.
So, 5 months, 6 scheduled MRIs that had been rescheduled due to illness, only 2-3 more months until the issue that the MRI may or may not diagnose can no longer be treated surgically...we finally get to the Big Day and they tell us to go home.
The poor nurse who had to deliver that news to us. I'm not sure if it was the flaring, raging nostrils on my husband or the tears that were welling up in my eyes, but God Bless Her, she someone worked some magic in the tight MRI schedule, and pushed our appointment back 7 hours just so it could be done that day.
Yup, seven hours of a food deprived infant. That was a hoot. But honestly, the nurses were wonderful, so were the doctors. They took turns coming in to the room to play with Sproglet to help pass the time and distract her from the hunger pains. They even brought in 4 extra nurses who sang "All About that Bass" to her while one of them inserted her IV (she loves Meghan Trainor) to distract her from the pain of the needle.
And the best part for me was that, since I was focused on keeping Sproggy calm as possible, I didn't have time to ruminate on anything that could possibly go wrong. Not that I thought anything would go wrong, but that fun anxiety disorder that I have doesn't really care about reality.
Anyway, they finally took her back at 3:30... She took a big liking to the handsome anesthesiologist, went right into his arms and gave him her best big smile. No complaints from her, no sir, not in biceps like those. She's just like her mommy.
And then, suddenly, she was all done. We were brought back to recovery where she was still asleep but starting to wake up. Once she was fully awake she downed a bottle of formula quicker than I'd ever seen, came home and slept like a log. She really did great.
So now we wait for results. We managed to bump the appointment with the neurosurgeon up by a couple of weeks, so we'll find out if surgery is needed. My fingers are crossed that the answer will be "no" to that. But if she does have a tethered spinal cord, it could mean the difference between her walking or not. Kind of a big deal.
Whatever the outcome, I do know she'll face any challenge gracefully... and she will help me do so gracefully as well. She's proving herself to be a fierce little girl and I'm in awe of her ability to stare down a challenge.
To that end, Children's Hospital is (rightfully) quite strict about the safety of babies undergoing sedation. They would not sedate Sproglet if she showed even a hint of a respiratory infection- which is why we had to reschedule the test five times. Every time we arrived at the scheduled MRI date, she would develop a fever or a head cold or a cough. Pretty difficult to avoid germs during a Boston winter, after all, and keeping her in a bubble was not an option. Plus, her pulmonologist believed that she was aspirating her formula, which was exacerbating all those chest infections, so getting her feeding under control was imperitive before the MRI.
Which brings me to the morning of the MRI. We'd followed the strict feeding schedule that Children's had given us (no formula after 4am, and only water until 8am), but what no one had taken into account was the fact that Sproggy's liquids are now thickened. The product that we use to thicken her formula has a food additive which, turns out, alters her digestion. Long story short, once the anesthesiologist found out I'd added the thickener to her water that morning, he refused to anesthetize her.
So, 5 months, 6 scheduled MRIs that had been rescheduled due to illness, only 2-3 more months until the issue that the MRI may or may not diagnose can no longer be treated surgically...we finally get to the Big Day and they tell us to go home.
The poor nurse who had to deliver that news to us. I'm not sure if it was the flaring, raging nostrils on my husband or the tears that were welling up in my eyes, but God Bless Her, she someone worked some magic in the tight MRI schedule, and pushed our appointment back 7 hours just so it could be done that day.
 |
| "You are, LIT'RALLY, the worst mother on the planet." |
Yup, seven hours of a food deprived infant. That was a hoot. But honestly, the nurses were wonderful, so were the doctors. They took turns coming in to the room to play with Sproglet to help pass the time and distract her from the hunger pains. They even brought in 4 extra nurses who sang "All About that Bass" to her while one of them inserted her IV (she loves Meghan Trainor) to distract her from the pain of the needle.
And the best part for me was that, since I was focused on keeping Sproggy calm as possible, I didn't have time to ruminate on anything that could possibly go wrong. Not that I thought anything would go wrong, but that fun anxiety disorder that I have doesn't really care about reality.
Anyway, they finally took her back at 3:30... She took a big liking to the handsome anesthesiologist, went right into his arms and gave him her best big smile. No complaints from her, no sir, not in biceps like those. She's just like her mommy.
And then, suddenly, she was all done. We were brought back to recovery where she was still asleep but starting to wake up. Once she was fully awake she downed a bottle of formula quicker than I'd ever seen, came home and slept like a log. She really did great.
So now we wait for results. We managed to bump the appointment with the neurosurgeon up by a couple of weeks, so we'll find out if surgery is needed. My fingers are crossed that the answer will be "no" to that. But if she does have a tethered spinal cord, it could mean the difference between her walking or not. Kind of a big deal.
Whatever the outcome, I do know she'll face any challenge gracefully... and she will help me do so gracefully as well. She's proving herself to be a fierce little girl and I'm in awe of her ability to stare down a challenge.
Monday, January 30, 2017
Early Intervention is the Best Thing Ever/Insurance is the Worst Thing Ever
Sproglet's pediatrician, being the all knowing, wonderful person that she is, referred us for Early Intervention very early in Sproglet's life. I believe it was her three-month check up. We didn't have a diagnosis yet, but were in the early stages of testing for a genetic abnormality. Dr. R asked how I'd feel about starting her in Occupational Therapy- not that she was worried per se, but just based on the belief that it couldn't hurt. If it turned out she needed it, then great, we were ahead of the curve.
Great, I thought. So we started intake with an Early Intervention company near us. I had no idea what to expect, but I can tell you that I never dreamed so much GOOD would come from this one little referral.
Sproglet underwent an evaluation, and was accepted into Early Intervention. In our state, every child who qualifies for EI receives it free of charge until the age of three. She was scheduled for Occupational Therapy, and after a month or so, we got to meet her therapist and Sproglet got to work.
I have to laugh when I look back on those early days. Especially when they'd ask me what goals I had in mind for Sproglet. I didn't have a clue what to tell them! She was undiagnosed, so I couldn't point to typical delays that 9p kids experience, nor did I really know what OT was until her therapist explained it to me.
Basically OTs work with people (infants to adults) to identify ways to improve their conditions. Sproglet, we know, had a lot of motor and muscle delays that needed to be attended to, and her therapist would work one on one with her to develop a treatment plan. For example, at 9.5 months, Sproglet should be getting close to sitting up on her own, or crawling. In reality, she's nowhere near these points. She can sit up for short periods of time with support, but tires quickly, and she doesn't have the core strength to hold herself up on her knees in order to crawl. So the OT works with her to strengthen those muscle groups- and shows us, her parents, as well as her Day Care teachers, how to help her build those foundations. This woman, who can't be more than a few years out of college, is excellent. Always trying different things to see what works best for Sproggy, giving us pointers. Oh and she's an incredible cheerleader, genuinely thrilled whenever Sproglet develops a new skill. It's just awesome to watch.
Now that we have a diagnosis of T9p, and we know that many people with the condition struggle with communication, we have also added a Speech Therapist to the team. While of course a 9.5 month old isn't going to be speaking words, she works with Sproglet on communication- baby sign language and the like. She is also a great support for both Sproggy and myself. I get texts from her and the OT all the time, asking how things are going and if we need anything. They're great.
Now, for US. We have also been invited to take part in a Parents' Group that meets monthly- for parents of kids with special needs who are involved in EI. Let me tell you, the feeling of being in a room full of parents who, while they all have totally different experiences, just simply understand the issues that Special Needs families face- man, it's incredible. I've cried with these people, fumed with them, laughed and celebrated. I mean, you try to explain what it's like to have your life revolve around a child who needs constant supervision and medical care to someone who's never had to deal with it.... it can be really frustrating. Not that I'm looking for sympathy, but the fact is that everything- everything- in my life now has to take a back seat to ensuring her care. And as such, other important matters, such as work, need to be reorganized.
I had a coworker complain that I was on the phone on non-work related issues a few weeks ago. What I couldn't explain to him was that Sproglet's medicaid had been cancelled (for reasons still unknown), and we were therefore receiving medical bills to the tune of $12,000 . And those bills would be growing! Yes, we have really good primary insurance, but apparently when so many bills get submitted to your insurance company, they just say "nope" and the bills get redirected to you. Oh and we were receiving calls from Collections Agencies threatening lawsuits if the bills weren't paid.
Sproglet has a Disability Supplement, which means that, in Massachusetts anyway, she will always, always have insurance through the state (we hope, anyway). She has so many complex needs that Medicaid supplements a huge amount of her insurance. I am eternally grateful for this, and until now, I'd never understood how a family with insurance could go broke due to medical bills. And there are people who have much more difficult medical issues than we do...Its amazing how quickly it all adds up.
Anyway, due to a paperwork misfiling, Sproglet's Medicaid had been cancelled. That meant we were on the hook for: every co pay for every doctor we were scheduled to see ($30 a pop, and when you see four doctors a week, that adds up), her formula ($50 per can, at 2-3 cans per week), her medical equipment (a ventilator to treat her respiratory infections), AND her Early Intervention.
So, yes, unfortunately the Insurance Office has the same working hours as I do. I would be placed on hold waiting for the next available agent and do my work- but basically be tied to my desk. I couldn't really schedule meetings or interviews until I was able to get a hold of someone who could get the policy reinstated. In all, this took roughly 5 full days to get sorted out. That's a lot of time for a working professional.
The good news is that the policy was fixed and reinstated... but we'd already paid a LOT of money up front for the Co-Pays (hospital policy requires payment upon service) and we will not see that money reimbursed.
Am I complaining? Well, yes, I am. Sometimes I have to vent a little.
Great, I thought. So we started intake with an Early Intervention company near us. I had no idea what to expect, but I can tell you that I never dreamed so much GOOD would come from this one little referral.
Sproglet underwent an evaluation, and was accepted into Early Intervention. In our state, every child who qualifies for EI receives it free of charge until the age of three. She was scheduled for Occupational Therapy, and after a month or so, we got to meet her therapist and Sproglet got to work.
I have to laugh when I look back on those early days. Especially when they'd ask me what goals I had in mind for Sproglet. I didn't have a clue what to tell them! She was undiagnosed, so I couldn't point to typical delays that 9p kids experience, nor did I really know what OT was until her therapist explained it to me.
Basically OTs work with people (infants to adults) to identify ways to improve their conditions. Sproglet, we know, had a lot of motor and muscle delays that needed to be attended to, and her therapist would work one on one with her to develop a treatment plan. For example, at 9.5 months, Sproglet should be getting close to sitting up on her own, or crawling. In reality, she's nowhere near these points. She can sit up for short periods of time with support, but tires quickly, and she doesn't have the core strength to hold herself up on her knees in order to crawl. So the OT works with her to strengthen those muscle groups- and shows us, her parents, as well as her Day Care teachers, how to help her build those foundations. This woman, who can't be more than a few years out of college, is excellent. Always trying different things to see what works best for Sproggy, giving us pointers. Oh and she's an incredible cheerleader, genuinely thrilled whenever Sproglet develops a new skill. It's just awesome to watch.
Now that we have a diagnosis of T9p, and we know that many people with the condition struggle with communication, we have also added a Speech Therapist to the team. While of course a 9.5 month old isn't going to be speaking words, she works with Sproglet on communication- baby sign language and the like. She is also a great support for both Sproggy and myself. I get texts from her and the OT all the time, asking how things are going and if we need anything. They're great.
Now, for US. We have also been invited to take part in a Parents' Group that meets monthly- for parents of kids with special needs who are involved in EI. Let me tell you, the feeling of being in a room full of parents who, while they all have totally different experiences, just simply understand the issues that Special Needs families face- man, it's incredible. I've cried with these people, fumed with them, laughed and celebrated. I mean, you try to explain what it's like to have your life revolve around a child who needs constant supervision and medical care to someone who's never had to deal with it.... it can be really frustrating. Not that I'm looking for sympathy, but the fact is that everything- everything- in my life now has to take a back seat to ensuring her care. And as such, other important matters, such as work, need to be reorganized.
I had a coworker complain that I was on the phone on non-work related issues a few weeks ago. What I couldn't explain to him was that Sproglet's medicaid had been cancelled (for reasons still unknown), and we were therefore receiving medical bills to the tune of $12,000 . And those bills would be growing! Yes, we have really good primary insurance, but apparently when so many bills get submitted to your insurance company, they just say "nope" and the bills get redirected to you. Oh and we were receiving calls from Collections Agencies threatening lawsuits if the bills weren't paid.
Sproglet has a Disability Supplement, which means that, in Massachusetts anyway, she will always, always have insurance through the state (we hope, anyway). She has so many complex needs that Medicaid supplements a huge amount of her insurance. I am eternally grateful for this, and until now, I'd never understood how a family with insurance could go broke due to medical bills. And there are people who have much more difficult medical issues than we do...Its amazing how quickly it all adds up.
Anyway, due to a paperwork misfiling, Sproglet's Medicaid had been cancelled. That meant we were on the hook for: every co pay for every doctor we were scheduled to see ($30 a pop, and when you see four doctors a week, that adds up), her formula ($50 per can, at 2-3 cans per week), her medical equipment (a ventilator to treat her respiratory infections), AND her Early Intervention.
So, yes, unfortunately the Insurance Office has the same working hours as I do. I would be placed on hold waiting for the next available agent and do my work- but basically be tied to my desk. I couldn't really schedule meetings or interviews until I was able to get a hold of someone who could get the policy reinstated. In all, this took roughly 5 full days to get sorted out. That's a lot of time for a working professional.
The good news is that the policy was fixed and reinstated... but we'd already paid a LOT of money up front for the Co-Pays (hospital policy requires payment upon service) and we will not see that money reimbursed.
Am I complaining? Well, yes, I am. Sometimes I have to vent a little.
The long road to MRI
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.
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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