Nutritive Sucks and Torticollis

Grandma Kenski came over on Friday afternoon. She helped Jeff give Henry a bath. Then, we had a visit from Judith from the Blake Foundation. She came over to assess Henry's development. Henry was referred to AZeip (Arizona Early Intervention Program) by the NICU. I think that any baby born under 2 lbs 10 ozs is automatically referred by the hospitals. There was a glitch in AZeip's online referral system in June. All referrals were lost. After we'd been home a month, I began wondering why we were never called for a consultation. Found out about their glitch, so I got the ball rolling myself. I guess AZeip contracted the development assessment out to the Blake Foundation. Judith visited a couple weeks ago. This time, she asked an Occupational Therapist (OT) to come out with her. I had explained during my first telephone discussion with Judith that one of our biggest problems at the moment was Henry's eating habits (sometimes taking over an hour to finish a bottle, then it is time for the next one). Yes, Henry's reflux has made it wise for him to eat in small amounts, but eating constantly at a lazy pace is very frustrating because: (a) we have to have a bottle in his mouth all of the time, and (b) this contributes to his sleeping problems.

I know that several parents of full-term babies have said "Eating all the time is normal for newborns" or "Poor sleep comes with the territory." Having talked with the neonatalogist about this, I have felt vindicated that there's nothing normal about how we've been living the past few months. I guess you'd just have to see how we've been living to truly understand the problems we've been facing (that is, if we could let people into our house, which we can't).

The OT's name is Cuyler. And, she was fantastic. She said that just about all preemies have poor sucking abilities (some worse than others, but all generally poor) because of poor muscle strength in the jaw. The jaw of the preemie should be supported while eating in order to obtain the right type of sucking pattern. There are two types of sucks when it comes to bottle-feeding: nutritive and non-nutritive. The nutritive suck is long and hard. The non-nutritive is weak. Long story short, she showed us some techniques on holding the bottle and jaw, and we had Henry eating well in no time. He's been able to polish off 70 mls in less than 14 minutes. This is a God send for us.

Cuyler said that poor sucking leads to poor cheek development, which leads to many problems down the road. When preemies get older and have to take in more food, the non-nutritive suck can end up meaning that they actually burn more calories sucking than they do taking in food, which then leads to weight plateaus and/or weight losses. Obviously, Henry is gaining weight now, but not without lack of sleep and much frustration. And, we don't want to put in him in a situation where he could end up being a failure to thrive case.

In terms of his physical development, we've noticed that Henry uses his right side much, much more than his left side. His pediatrician had said that Henry had some stiffness in his neck on the left. The OT picked up on this and did an examination, which suggested that he has torticollis (tight neck) on his left side. If untreated, it can lead to TMJ and muscle development problems. He is definitely right side dominant (doesn't use the left hand much). The good news is that Cuyler thinks that it is fixable through some stretches that will help loosen up Henry's muscles.

Apparently, doctors and OTs are seeing more and more cases of torticollis in infants. The increase may be an unintended side effect of the "Back to Sleep" campaign. Infants are spending very little time on their tummies. Consequently, their necks are getting stiff from being on their backs all of the time.

Judith and Cuyler are going to call us next week. It appears that Henry will qualify for occupational therapy once every other week. I think that he is being classified as "developmentally delayed" as opposed to having a "disability" at the moment.

After Judith and Cuyler left, we went on our evening walk. Henry was awake for the walk. When we got back, we fed him a bottle using Cuyler's techniques, and again, Henry took down a lot of milk quickly. He then passed out. He began stirring around 9PM. I went and fixed him a bottle. By the time that I got the bottled fixed, Henry had already fallen asleep again. He and Jeff sacked out on the couch. A bit later, I got on the couch and fell asleep too. Henry began to stir a little before 1AM. Jeff and I were a bit surprised at how long Henry had slept. Henry had basically slept in Jeff's arms from 8PM to 1AM straight (except for his brief wake up around 9). That's the longest, by far, that Henry has ever slept in one session. There was one time where he slept almost three hours straight (that's been the exception, not the rule). When Henry awoke, he was really upset. His stomach had never been that empty before. We got him a bottle (he downed it quickly). I took the night shift. He ate several times, but all went down smoothly, which was really nice. He did sleep/lay in his crib for 40 minutes at one point during the night (again, this is an improvement).

I can't help but wonder why the NICU doesn't have an OT on staff, considering that these feeding problems are so common amongst preemies and relatively easy to treat. Jeff and I feel that Cuyler is worth her weight in gold!

Jeff and I switched shifts at 6AM. I pumped before going to bed. Slept until 10AM. We went on our dog walk, which was nice. Jeff weighed Henry at 10 lbs 13.5 ozs when we got back.

Grandpa came around noon. Then, Grandma came around 2:30PM. Both grandparents fed Henry with the new techniques. Grandma had Henry do some tummy time. Henry lasted around 15 minutes straight, which is also a new record. Then, she rolled him onto his back. We learned yesterday that when a baby cries during tummy time, you should roll him on his back before picking him up (so that he doesn't associate crying during tummy time as an automatic way to get picked up and out of it). Marley laid down next to Henry. She wasn't thrilled when Henry reached over and grabbed her fur. She looked a bit started but tolerated it.



Our evening walk was pleasant. Tried to breast feed Henry when we got back from the walk. That lasted just a couple minutes. Then he zonked out. He spent on hour on our bed sleeping, while I watched him. I had a lovely CD of lullabies that Michelle Leonhart gave us playing in the background. I transferred him over to his crib. He fussed at first, but then passed out. He's still sleeping there now.