So I mentioned a few weeks ago that Tyler was having some difficulty drinking from a cup/bottle. This crazy adventure began back in August when that mothers instinct kicked in…the one when you know something is wrong, but you’re not sure what. I felt like he wasn’t getting enough breastmilk from our nursing sessions because they were extremely short and he was very fussy and unhappy after each session. He would try to get more, but couldn’t, which led to further frustration on his part. (And mine.)
We made the decision to start supplementing him, and in doing so discovered a greater and deeper problem. His suck-swallow-breathe pattern was all out of whack, and he didn’t have the strength and muscle tone in his cheek and lip muscles to suck the liquid from the fast flow bottle.
The muscle tone and strength issue are relatively easy to manage and overcome. The suck-swallow-breathe dis-coordination is caused by an underlying neurological problem and little can be done to help it. I accidentally discovered that if I walk with him while he drinks from the bottle, that helps him with the suck-swallow-breathe rhythm…but it’s still not enough. It makes sense, as his sensory system is all out of whack and I’m flashing back to 3 years ago when we faced similar sensory issues with Ryan. The difference being that Ryan had little difficulty drinking from a cup.
It is a struggle every day to get Tyler the liquid and calories that he needs to gain weight. We have been on a whirlwind of a tour visiting different doctors, specialists and therapists trying to figure out what is going on… and trying to come up with a plan to get him the calories and fat he needs to grow and gain weight. Because Tyler is only getting about 2-3 ounces of breastmilk or formula at a time (as opposed to the 6-8 that is age appropriate), we were referred to a dietitian by his occupational therapist and by our pediatrician.
We had his appointment with the dietitian yesterday and the verdict is…we need to fatten this kid up. And quick! He has dropped from the 75th percentile in weight at his 4 month old checkup to 10th percentile in weight, as of yesterday. This is a concerning drop in percentiles.
So we are putting him on a high fat, high calorie table food diet to make up for the calories and fat that he is not getting from breastmilk/formula. I’m very pleased with the plan, even though it means giving him foods that I might not normally give because of their sugar content. (Sugar = calories. And calories are what he needs most right now.) We are sticking to higher calorie, higher fat foods like soy yogurt, soy cheese, soy nut butter, avocados, organic dairy free cereal bars, and Soy Bright Beginnings (a 30 calorie/ounce nutritional supplement…the dairy free version of Ensure.) mixed in with a higher-calorie formula measurement.
Our goal is for him to get 1,000 calories per day to help him start gaining weight and catching up on the weight he needs to make up. We also have an appointment with “the feeding team” (which is a group of about 8 specialists who will evaluate him) next week…and from what I hear, he will likely get the full workup, as they try to figure out what is causing the neurological/mechanical issues he seems to be having, and if he is having any other stomach or intestinal issues going on as well.
I have been so preoccupied and overly worried about Tyler that much of my energy has been spent on him and working with him, doing therapy with him, and sitting with him while he eats, logging what and how much he eats, and walking with him as he drinks from (or refuses) the bottle.
I am not a crier. At all. But I have been reduced to tears a number of times in the past week, out of sheer frustration and exhaustion with the whole situation. I am not a napper. But I took two 2 hour naps over the weekend…thanks to my gracious husband for allowing me to do so (even giving up his Sunday afternoon siesta.)
I know that I have to take care of myself, so I can take care of Tyler and get his nutritional and caloric needs met. I’m grateful for the help from my husband over the weekends and during the evenings…and for the help from my dad this week too.
So as you will see, budget shopping was not high on my priority list this week.
Here’s our cart from this week’s trip.
I took my dad along. Because he wanted to grill us some steaks for dinner, which we had last night. (Mmmm!) And while in the store, quite a few items that I don’t normally purchase…like paper towels, Coke, corn chips, cookies, double the salsa, …magically appeared in the cart. For my dad.
He is a bit of a paper towel fiend. After just the afternoon and evening, most of the first roll is gone. I’m really not sure how we are related because we don’t even use paper towels. Ever.
No. I kid.
We bought some of his comfort items for while he’s here…paper towels and “Laddie Juice,” aka Coke. (The paper towel thing is very much a running joke in the family. We kid about it all the time!)
And when it came time to check out, my dad was overly gracious and generous and paid for our groceries for the week. I’m especially grateful, because I had a number of expensive new items in the cart that I’ll be offering Tyler in the coming days…as I try to figure out which of these new high calorie foods he will like, and which he won’t like.
I imagine that our grocery budget will go back up some because of Operation Fatten Up Tyler…I’m not sure how much, but I’m hoping not more than$75/week (up from $60/week). I’ll have a better sense in a few weeks.
But for now, I’m taking care of Tyler, his nutritional and caloric needs, and doing my best to get him back into the 50th percentile for his weight!
Thanks to Andrea at Mommy Snacks and Marcy at Stretching a Buck for posting the best deals and coupon matchups at my stores each week! Find the coupon match-ups for your grocery store at The Frugal Map!