Since Scarlette has been home from the NICU I can think of exactly three times when I’ve shed tears over her delays. Once was when I was struggling to put down a feeding tube and drew back blood. Once was when she was trying so hard to grab for a toy during a physical therapy session and it broke my heart that her body just couldn’t do it. And the other was the day my best friend gave her little boy a peanut butter and jelly sandwich.
Four little triangles in chubby fingers did me in.
“There’s something wrong with Scarlette, Nat. And I have no idea what it is.”
Around the time Scarlette turned 15 months old I started to notice she was having difficulty eating. I was also noticing a few quirky things about her personality, like the fact that she refused to touch stuffed animals or wouldn’t wear denim.
(Some of y’all asked for an update on her diet/development and this is it- but it got really long! Please click continue if you want to read all about medical/sensory stuff. If not, come back tomorrow when I tell you a funny story about my neighbors 😉 )
Eating has never looked “normal” for Scarlette. She spent almost four months of her life on total parenteral nutrition (TPN) which is when nutrients and vitamins are delivered intravenously because a person can’t have any other from of nutrition such as breastmilk or formula. She moved from there to a feeding tube and an amino-acid based formula because of a milk protein intolerance (MPI) which meant she couldn’t have breastmilk or regular formula.
Because she didn’t learn to suck/swallow/breathe and digest like most babies, it took a long time for her to learn to drink from a bottle. And since her milestones are measured by her adjusted age plus the fact that she was delayed by her feeding tube, it took a very long time to introduce solids and she was about thirteen months old before we started trying things other than purees.
At 15 months we got the okay to try and introduce dairy slowly over the period of a month to see if she had outgrown her MPI. And y’all, she had. I can’t tell you how much we were rejoicing, not only because I didn’t want her to have to deal with a dairy allergy but also because her prescription formula cost about $50 per can. PER CAN. And we live in a state where it wasn’t covered by our insurance *faint*
But along with the good news is when I started noticing that she wasn’t tolerating any foods other than purees. It took six solid weeks to convince her to put a Puff in her mouth and then she choked and gagged on it. Which took me aback because Puffs? They dissolve. I tried making her purees a little chunkier. She gagged and made herself vomit. Then I thought maybe i wasn’t doing a good job of making her food so I went to the store and bought one of each type of baby food in stage 2 and 2.5 and she gagged her way through all of them. I bought yogurt melts and she gagged. And so on.
I also noticed that she wouldn’t touch any of her food. She didn’t stick her hands in her food and get messy. She wouldn’t pick up anything and put it in her mouth. She wouldn’t let me put anything in her mouth with my fingers. FORGET about brushing that baby’s teeth unless you had a death wish.
After talking to her doctors and her early intervention team, we had another evaluation done and found out that Scarlette’s eating problems are twofold. One: she didn’t know how to chew. She was just sucking her food the way you drink from a bottle and thus, gagging. Two: she has some sensory issues, especially as it relates to oral aversion.
At one point in her little life she had three different tubes going down her throat (vent, feeding, replogle) so she has a bad association with things being put in her mouth. In addition to that, she had deep grooves in her gums and the roof of her mouth, cut in by the tubes. Food gets caught in those grooves and causes her to gag. Which in turn scares her so that she doesn’t want to eat.
On top of all of THAT, her doctors were worried about her weight gain, or lack thereof. She is measured against a growth curve for 25-week preemies and still falling short. Which I think has more to do with the fact that she is my offspring and I am a grown woman with the body of a seventh grader. (Fine, a fifth grader. Whatever.)
We’ve been doing 2x a week therapy for a few months now. She has regular feeding/speech therapy on Tuesdays where we work on her chewing. We’ve come a long, long way and she’s now able to eat Cheerios and things like french toast and peas. At 18 months old she successfully ate her first biter biscuit.
On Thursdays we have sensory therapy. I’ll be honest when I tell you that the sensory diagnosis upset me. Frightened me is probably a more apt description of my feelings. I didn’t want her to have a hard time navigating the world. I’ve always known that cerebral palsy and autism were two of the things her team were watching for and I’d love her no less if we’re handed a diagnosis but you still hope you won’t get one. We’re no longer worried about CP and her team says they think her sensory issues are all we are going to see.
After testing we discovered that she doesn’t like the feeling of anything overly soft like blankets or stuffed animals. She’s a hard plastic girl. She doesn’t like dirty hands. If you happen upon us playing in the backyard, you’ll hear a lot of “It’s okay for our hands to be messy. It’s okay that there is dirt on our hands. We’re playing outside.” as you see her frantically waving her hands at me and signing “hurt” in hopes that I’ll wipe the dirt off.
Finger painting is a ton of fun around here, as it involves her sticking her hands in the paint, looking at them and then frantically trying to wipe it off in her hair. (Actually, it is kind of fun for me because c’mon. That’s just cute.)
She also doesn’t like to touch any food that is messy. I count it HUGE progress that she will now put things like peas and cheerios and bread in her mouth. Last week she touched a banana and I practically threw a party. This week she started eating some breaded salmon bites and I’m all PRAISE THE LORD AND PASS THE AMMUNITION! She refuses to feed herself with a spoon still because she has such an aversion to putting things in her mouth.
It’s frustrating. It’s frustrating because feeding therapy isn’t just a twice a week thing, it’s an every meal sort of thing.
It’s frustrating because her therapy involves five meals a day for her and that is that many times a day that I’m trying to convince her to do something that she doesn’t want to do. Scarlette is stubborn and I love that about her. I think that and the good Lord saved her life.
It’s frustrating because her weight gain is so important and yet she doesn’t always want to eat. So my day is spent sneaking purees into her french toast and blending up smoothies full of avocados and holding my breath each time we go for weight check.
But it’s also okay. Okay because we’re making really great progress.
And okay because of all of the possible outcomes we have faced, this is small. This is do-able. This is hard right now but this won’t be hard forever.
So she is 19 months old and her feeding skills scored at the level of a ten month old.
BUT.
Her language skills? Y’all, they were so good. They measure her against her adjusted age of 15.5 months but she surpassed even her actual age when they assessed her verbal development. She can say words and point out letters and when she’s tired she brings me her pacifier, lays her head against my leg and says “Ni Ni Mama”
She graduated from physical therapy and now she’s running through the yard or climbing up her play set or trying to do a somersault. (Note: I TOLD Jeff she wanted to be a gymnast rather than a tennis player)
She weighs eighteen and a half pounds and while on the phone with my best friend this week we discovered that is the exact same weight as her six month old.
She is small but she is totally unstoppable.
(p.s. I hope my happiness with where we are shows through the fact that I am a bit overwhelmed. I attend a micro-preemie support group and I know how lucky we are! I count all things we encounter with Scarlette a blessing, because she is here)
