I was either stupid enough or brave enough to visit Target on a Saturday a few weeks ago. We needed baby food. And they have the widest variety. (Read: they have throw pillows and cute earrings). My mind was tired by the time I got to the checkout. Mentally trying to add up the contents of my cart in my head is hard work, yo. The checkout cashier was chatty, in the friendly man-she-really-likes-her-job kinda way. I liked her. It was refreshing.
Until this:
Chatty: “Wow, you have a lot of baby food!”
Me: “Yeah, I try and get enough for two weeks”
Chatty: “I’m sooo glad I don’t have to buy these jars anymore. My son went almost straight to animal crackers. He stopped eating baby food when he was 6 months old, thank goodness.”
Me: (please don’t ask me how old my kid is). “Oh, you know what? I forgot gum.”
Tucker is 19 months old. He still mostly eats pureed baby food. We’ve been buying pureed food for close to 10 months now. He, like so many preemies (particularly micros) struggles with feeding. I was hoping Chatty wouldn’t ask me his age, not because I’m ashamed of his struggle, but because I didn’t have the energy or time to explain. Explain that his feeding issues are a result of his extremely early arrival. To explain that I actually feel thankful that this is one of the few areas that Tucker is delayed because I know the list could be much more extensive. I didn’t have time to explain to Chatty the multitude of reasons that preemies struggle with feeding. To explain that no, it isn’t just that “he’s a picky eater”.
Feeding and preemies? Arch enemies. I’m not being dramatic. Ask any micro preemie parent-they’ll tell you that feeding troubles are among the absolute hardest. Period.
Digestion is one of the last functions to develop in the third trimester, under normal circumstances. But the micro preemie feeding fairy doesn’t care one bit about what “should” be happening inside that isolette. She’s cranky and fickle. She’ll make you think your little guy or girl is making strides with feeding and then? She’ll sock it to you. Infection, reflux, aspirating, scarring from being intubated, low facial muscle tone, allergies, paralyzed tissues, surgeries. It all impacts feeding development. Sometimes the issue manifests immediately, many a preemie goes home with a feeding tube. Sometimes it takes a while for the issue to show up-most often when you transition from one feeding stage to the next (ie bottle to puree, or puree to solids etc). But it is rare for a micro preemie to sail smoothly through the waters of feeding.
There are a myriad of troubles preemies can have related to eating and the severity varies widely. The reasons behind disconnects with feeding for preemies are many. Every single case is different. Some are sensory related (read about Jack). Some are related to an infection from the NICU (read about Luke). And some are just, well…whew (read about Owen).
For Tucker, we’re not sure. We’re just starting the feeding woes. On the spectrum of severity, Tucker lands in the mild category on this hurdle. He has always been a great eater and it’s one of the reasons I believe he escaped some pretty detrimental NICU blows. We have though, reached the point at which we cannot go it alone. Tucker cannot tolerate solid foods. We’ve had him assessed three different times. He doesn’t move food to the sides of his mouth to chew. His adorable dimpled cheeks have tight muscle tone. Even though he has a mouthful of teeth, he doesn’t use them to chew (only to bite my fingers when I’m brushing his teeth). He has an ultra sensitive gag reflex (as most preemies do) that may be related to texture/sensory issue, may not. Any textured food that he doesn’t recognize, he immediately throws up as soon as it hits the back of his mouth. He does not sip from a straw. He does not eat any solid foods that require chewing.
So. We are starting feeding therapy. An OT (occupational therapist) will come to the house weekly to work specifically on feeding. We’ll set goals and work towards them both during therapy sessions and independently at home.
I have no idea what to expect. Based on fellow preemie posts about feeding therapy, I am prepared for patience. It seems to be measured in small steps. Either way, we are (and will be) proud of our boy. This is part of his preemie story. We would love your prayers during this season. I am hopeful for what’s to come. I’m hopeful that one day soon, he can enjoy food like his momma. I’m hopeful for the day that I can scold him for eating half the bag of Doritos. I’m hopeful for the day he can eat the piece of birthday cake that’s in the freezer. The one we’ve been saving since his 1st birthday. He’ll get there.
And when he does, I’ll buy him 5 boxes of animal crackers with icing. And sprinkles. Take that, Chatty.
“Every moving thing that lives shall be food for you. And as I gave you the green plants, I give you everything.” Genesis 9:3
Here’s some pics from our pre-isolation visit to the pumpkin patch.
He was most fond of the little pumpkins 🙂
Crystal says
Hello I’m a aunt of triplets…. 2 boys and 1 girl micro premises they were born 24 weeks they are now 14 months… it’s a battle but they bring so much joy I help my brother take care of them and let’s just say it’s not easy emotionally it’s draining but I wouldn’t trade them for anything in the world… the girl has no trouble eating but the boys on the other hand are very picky and they hold their food in their mouths… I was a bit worried but after reading your stories I see it’s normal also the boys haven’t started crawling yet just please keep us in your prayer
Annemarie says
My daughter Juliana is three in two weeks, she was born at 2 1/2 pounds. She also came home on a feeding tube. She got off it at maybe 6 months and drank formula thankfully from a bottle. She has had a hard time with solids. We have recently within the last three months gone from pureed baby food to toddler mini meals like soft pastas, mac and cheese, but still no meat. She gags easily spits food out and is a difficult eater. Thank goodness for pediasure. She still drinks bottles too. It’s nice to hear this is kind of normal for preemies, thank you all for sharing.
Heather says
Annmarie, happy birthday to sweet Juliana! I have read (and know) so many stories of preemies and feeding issues. It seems to be one of the longer roads for preemies post discharge. Tucker did a fair amount of gagging, especially with meat or textured items. He finally did get to a place where it doesn’t bother him and he eats just about anything now. Hang in there! Thanks for following our story!
Pamela says
My best friend had twins slightly premature, and they only just started to eat food other than formula when they were like 11 months old, after months of therapy. They couldn’t do anything but formula before that. And they weren’t even micros. Actually I’m glad to read this because I had wondered how normal that was, but I see it’s not that bad.
Holden's Mom says
This post definitely hits home for me. Holden is finally home with us after 184 days in the NICU and getting the g-tube and nissen surgery was the thing that let us finally get discharged. We are struggling with /adjusting to feeding through the tube. Definitely not looking forward to the long road of feeding ahead, but incredibly grateful to have him home and doing well. I started a tumblr after finally saying goodbye to caringbridge. Here’s the link if you are interested (only a few posts up now): http://hccq.tumblr.com. Thanks and keep up the good work!
Heather says
Just checked your blog on HCCQ-so cute. I’m so glad you’re home and you’re not alone, I know of many parents who decided to go with the nissen and g tube so they could get discharged. Hoping and praying for the road ahead in the world of feeding-will pray that Holden does well. Hang in there! Let me know if you’d like to connect with some other tubie moms, I know of several 🙂
Dan Paquette says
Our Leah just turned 3 and is still primarily bottle fed. From time to time she will devour some table food, but then go back to being picky. What she liked to gnaw on one day, a week later she won’t touch. Even cookies… She nibbles, but won’t actually finish one. Patience? Yes indeed. * she was 27 weeker at 1 pound 4.2 ounces
Heather says
Dan, thanks for sharing. It can be so frustrating, I’m sure. Will keep Leah in our prayers, hoping with you that she and Tucker will get over this hump!
Victoria says
Your post sent me way back in time. My micropreemie is now 24 and has definite and limited ideas about what he eats but he eats and I am very grateful. He also works, lives in his own home, and has a passion for music. However, I remember battling with his intake and the nutritionist who wanted me to document what he did eat. If we allowed him to feed himself, he and the high chair were covered in food. The nutritionist wanted to know how much he actually ate. What?! If we fed him he would gag and regurgitate but she wanted to know how much stayed down. Impossible. We bought prepared toddler meals for years. I hated explaining but I loved every gained ounce and knew we ALL had earned that tiny weight gain. Hang in there. My son was 9 pounds on his first birthday and is 135 pounds today. You can do it and so can Tucker.
Heather says
Victoria, thank you so much for sharing. What an inspiration your former 24 weeker is! Congrats to you (and him) on his amazing journey. Your story gives me encouragement, thank you!
BB says
I smiled reading your post. Ella is coming up on 19 months and still primarily eats purees. That’s okay. She does have a g-tube and SBS, so I’m happy she eats at all! We have had ST for quite some time. ST has great inputs about things to try but where I stand my ground is not to force things (ST agrees). I do NOT want to turn her off of what she likes. If the only thing she will eat this week is her favorite Squash & Peas, that’s okay. I will continue to offer other things but not at the expense of her enjoyment of a meal. She doest tend to try more things when she watches me eat the same thing (at the same time). Best of luck to you!
Heather says
BB-thank you for sharing Ella’s story. We went back and forth between deciding to go with an OT or ST. They seem to use some of the same techniques. Good luck to mighty Ella! Thanks for commenting.
Heather Lesoine says
Some of my favorite photos of Jack are him eating something…pizza, donuts, nuggets…and even Doritos! At 3, he eats like a typical toddler, but it was slow going, that’s for sure. Discharged with an NG tube until about 8 months old, I wondered if he’d ever eat normally. He was still taking bottles & purees at almost 2 yrs old. It wasn’t until he hit two that things started changing. I can’t wait to see Tucker’s foodie photos some day!!
Heather says
Heather, oh I can’t wait to get a pic of Tucker eating a big cupcake! Thanks for the encouragement…and yay Jack! That’s great to hear.