I was there the day they were born. They weighed the same. They were the same length. They had roughly the same APGAR score. Their growth was very similar in the early days of the NICU. Unfortunately Cole suffered from Wimpy White Boy syndrome and ended up spending many more days on the vent than Paige and overall had a much rougher NICU course than his sister. One thing we heard over and over again in the NICU was “they’ll catch up when they are 2” and “I know it looks bad but they’ll never remember any of this“. I call shenanigans.
Cole’s eating is getting worse. I’m afraid we are going to end up like so many other preemie families where we are dealing with feeding issues many years down the road. Cole and Paige couldn’t be more dissimilar in this department. I’m being totally serious when I said Paige had more to eat today than me. Cheerios, check. 6 crackers, check. Baby food, check, 1 full grilled cheese sandwich, check. Macaroni & Cheese, check. 3 fish sticks, check. An utter full of milk, check. Cole on the other hand had a cracker and maybe 10 ounces of formula (with a huge puke thrown in for good measure). In all honesty, it’s not so much the low intake, but the fighting, kicking, scratching, screaming, and hair pulling he is doing. Remember when the occupational therapist in the NICU said he was strong spirited? I hope this isn’t what she meant!
It’s hard not to focus on his eating. Everyday it consumes so much of our energy (re: Tobie’s energy). Do we just have it that lucky with Paige that we put food on her tray, she eats it all with no help, when we put a bottle in front of her, she’s able to drink it on her own? Everyday we see Paige grow a little bigger. There is now almost 5 inches and 5 pounds separating the two. Tobie and I have pretty big frames. I’m 6 foot and about 220 230 250 pounds with a mesomorph ectomorph body. Tobie’s 5′ 6″ and about 170 125 pounds with a mesomorph ectomorph body. Our families are big, we are big. Cole doesn’t seem to be heading down that path. Did I mention I was like 30 pounds at 1 year old?
I look at pictures from last November and Cole looks a little older now, but still is roughly the same size. Honestly, if Cole was just a little better in the eating department, so much stress would just be gone from our lives. It’s not his fault, it’s just who he is now. Would he have been this way if he wasn’t a micropreemie? Cole sticks his tongue out constantly, doesn’t like to be touched on the face, screams when he hears loud noises. I say he remembers his early days in the NICU and we’ll be dealing with his feeding issues well past his 2nd birthday.
See doesn’t that feel better? Just let it all out. Ahhhh. Onto other topics that require your feedback:
- I think during one of Paige’s surgeries she was transplanted with a cow’s stomach. When I say baby girl can eat, baby girl can eat. So this begs the question from two rookie parents, how do you handle a kid who’ll keep on eating as long as there is food in front of her? Should we limit the amount of food we give her? She’s doing fine on the growth charts. She just loves to eat! It’s actually quite funny watching her stuff food in her mouth, not finish swallowing and grab her bottle and start drinking. So gluttonous! That is until she inevitably chokes from trying to drink with a full mouth. Funny to the last drop?
- Anyone out there have kids with texture feeding issues and used those z-vibe spoons? Any luck with it?
Lastly, have I told all of you cyberspace people lately how much I admire Tobie’s strength and conviction with raising these two incredible “strong spirited” children while being 28 1/2 weeks pregnant with almost no help? She’s truly an amazing wife and an even more amazing mother (and I’m totally not saying this so I can go out and have a few beers with the boys this weekend, really I’m not).
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Hi-
I hope it’s okay that I post- I don’t know you or anything, but Cole is so much like my son (1 lb 15 oz 27 weeker) and I know the stress of the feeding issues.
Does Cole have an OT or SLP working with him? Ethan was DX’d with Sensory Processing Disorder, in addition to the Gastroparesis. The SPD caused (and causes still) his eating issues, and when you mentioned his dislike of loud noises and face touching, it was another thing our boys have in common.
Ethan just turned 4 and still doesn’t eat solid food. Sorry to scare you. He lives on pediasure (from a bottle, no less. He can’t stand the texture of the stuff and gags when we try a cup) and after much work with his SLP and OT he will eat spagetti and rice in small amounts, but we struggle still with moving beyond pediasure. Once he got tolerant of the pediasure he really started growing and is now ‘normal’ size for a 4 year old.
I don’t know if SPD has been suggested but thought I’d throw it out there for you in case it hadn’t been. The SLP who used to work with my son before he aged out of EI spent her entire workweek doing feeding therapy. And there was a waitlist to get in. You’re not alone with a kid who just won’t eat. I just want to strangle people who tell me “he’ll eat when he’s hungry”. They don’t know that lots of kids just Won’t.
Anyway, I hope Cole gives you a break today and eats. I have no idea on the Paige question, had to laugh at the image of her stuffing her mouth and grabbing her bottle.
Take care, Becky
It is so wonderful that Paige at least is eating well. As a NICU nurse I frequently hear back from parents of preemies about feeding issues. I have never heard of the z-vibe spoon, but it sounds perfect for Cole since he loves the electric toothbrush so much! As for Paige, as long as the food is nutritious I don’t see any reason to stop her from eating. If it seems like she’s eating wayyy more than necessary you could always just cut the caloric content by giving more fruits and veggies. Cole’s eating issues don’t seem to be as severe as the above poster’s son. I hope you will find something that works for you and Cole. Please update with word of the z-vibe, I’d love to hear how it works!
ps Tobie you are kicking so much butt at the pregnancy bit! 28.5 weeks is awesome!!!
I have never posted on your blog before, but wanted to say my daughter is just like Paige. She is a 30 weeker born 7/14/05 and doesn’t seem to know when she is full. She eats as much as I do and whenever she even glimpses food she starts yelling for it even if she just finished eating. Everyone has told me this can be normal for a preemie (as well as the other extreme) and she will outgrow it. I let her eat quite a bit, but do limit to some extent because I think she would never stop eating and it aggrevates her reflux. Good luck with Paige and sorry to to hear about Cole’s lack of eating. That is something I don’t have advice for!
http://www.haileyelizabeth.blogspot.com
Our children seem to be mirror images of one another. Our surviving triplets, Shyann and Caden are very similar to Paige and Cole.
Shyann (like Paige) loves to eat. In fact, I can remember a conversation with our pediatrician about her “overeating”. He said that as long as she is staying consistent on the growth charts, she was fine. Her eating definitely began slowing at around the age of 18 months… or at about the time she wanted to be completely independent in her eating.
Caden also looked like Shyann’s little brother for quite some time. We had many of the same issues as you describe with Cole. Caden hated things in and around his mouth and just didn’t seem that interested in food. We did have a speech therapist that worked with oral sensory issues, but he received little benefit from the therapy. She did suggest using frozen teething rings or vibrating toys, which seemed to help some of the sensory issues.
For Caden (and for his mommy and daddy) his 2nd birthday was a definite turning point in regards to his eating. At 2 1/2, he now eats nearly as much as his sister! We still have problems with most meats and other thicker texture foods, but overall he has made dramatic improvements. Find a food that he loves and stick with it. For Caden, that food was frozen french toast sticks with LOTS of syrup. He could go through a package of these in 2 days.
Good luck! I know it is challenging, but you will get through it. BTW, Congrats on the 28 week milestone. It’s all downhill from here! :o)
Tracy
Paige is so much like me!:)
Anyway, no expert advice here, just wanted to suggest that if you are concerned that Paige eats too many calories, try giving her foods that don’t have as many (fruits, vegetables, etc.) i’m sorry you are having so many issues w/ Cole. He doesn’t sound malnourished b/c he is so active and is meeting all these milestones
pretty early, but, then again, what do I know?? Anyway, from what you guys have described, it sounds like baby brother is getting pretty big too!! Any update on his weight?
- Anna (veryexcitd on TC)
Yay for 28.5 weeks. You are doing so great!
I wouldn’t worry that Paige is eating too much, as long and she is eating healthy food. If you are worried about it, I would have her eat less carbs and more veggies. Or more things high in protein. Babies need lots of protein. If you have started meats yet, give her more of that. If not, try beans. Lower in calories than cheese but high in protein. If you just want to fill her up, try things like brocolli florets or steamed carrots. Both really great for you and low cal. My son really likes both spinach and kale, but it ends up to be a pretty big mess.
I am so sorry about your struggles with Cole’s eating. I wish that I had any advice for that.
Some of the things you described in Cole’s behavior sound like sensory issues. (Tactile defensiveness and auditory processing) All 3 of my guys have sensory issues with food, but my Jackson is pretty consistantly 4-5lbs behind his brothers. He used to have Speech Therapy at Cole’s age for Oral Motor Feeding issues, and has since grduated to OT for Sensory Integration Disfunction.
Hi, I too don’t know you, but I wanted to say I don’t know how you do it…I have one son who is just a little younger then your 2. We have had a turbuliant year and a very difficult time feeding him! I EMPATHIZE with you completely… it is SOOOO stressful when you have a young child or infant that can’t/won’t eat…..I don’t know what I would do if I had another toddler and was pregnant! Your wife must be AMAZING!
God bless you!
Paige reminds me SO MUCH of our littlest triplet Kristin. She’s now 2 years old, still fits in size 9-12 month clothes, and eats like her father - by handfuls! I just keep putting the food in front of her as long as she eats it. I figure, she needs to find out when she’s full and when she is hungry, and she can’t do that very well if I’m regulating her food. Plus, I swear she has tapeworm, because she doesn’t gain an ounce!!! Erghhhh! When they were born (at 28 weeks) they didn’t tell me that the girls might be caught up developmentally at 2 years but would lag in the size department FOREVER
Good luck, and best wishes for your family!