Weight & Feeding:
A Preemie Parent’s Struggle
We all know, to the gram, what our preemies weighed at birth. Many were so tiny they could be compared to a block of butter or the size of our own hands. And while in the NICU, our friends and family would ask "What does he weigh now?" regardless of the medical condition of the baby. If they were growing, then they must be doing well.
Ask any mother about their baby or toddler and they’ll surely know what "percentile" their baby falls into on the "growth chart". Ask any mother of a preemie, and most likely, their baby hasn’t even hit a chart yet. According to my own informal survey of 71 preemies (22-36 weeks gestation at birth), 17 which we had information for at 24 months, the average weight of a 2 year old preemie is about 21 pounds 10 ounces. According to the weight chart in "What to Expect The Toddler Years" the average weight of a 2 year old, if born full term, is about 28 pounds for a boy and 26.4 pounds for a girl. 21 pounds 10 oz is under the weight chart for a 2 year old boy and hits the 5% mark for a girl. 21 pounds 10 oz is in approximately 50% for a 13 month old girl or a 10 month old boy.
We’re constantly told that they’ll catch up by the time they are 2 years old, yet our 2 year old preemies are about the average size of a 1 year old! My own FT daughter weighed 2 pounds more at 17 months than her preemie brother did at the age of 3 .
With all this concern about weight, how can we help but obsess about how much our kids eat! I hear stories about typical toddler eating problems all the time. No, for the most part, toddlers do not like to eat. Yes, for the most part, toddlers can be picky to the point of eating only a few kinds of food or following peculiar eating rituals. However, the standard advice of "Present a variety of choices and your baby will, over the course of time, eat a healthy diet." or "She’ll eat when she’s hungry -- she won’t starve herself" simply do not apply to all kids.
It seems like so many preemies are facing severe feeding disorders. These disorders include children with oral aversions, poor oro-motor skills and medical problems that include reflux and dysphagia. Many times these feeding disorders lead to the need for g-tubes or fundoplication. Other times the children live on an oral liquid diet. It’s hard enough to have a healthy toddler who won’t eat. The added stress of a toddler who was a preemie or has medical or health problems added to normal toddler issues is enough to
send a parent over the edge.
Our Story
Conor’s Feeding Problems
Conor was only 1lb 3oz at birth. He had quite a bit of trouble tolerating feeds while in the NICU and after 6 weeks had only gained 7 oz. We’d call the NICU every night right after the weigh in to check on his progress. Each time they’d increase his feeds we’d hold our breath, cross our fingers and say a little prayer that he’d do ok. Invariably he didn’t.
Conor had to stay in the NICU an extra two weeks (a total of 20 weeks) because he was constantly vomitting and still tube feeding. It was our decision to take him home with the Ng tube. We convinced the pediatrician we could handle it. Of course we could --we had been handling just about everything thrown our way for the last five months.
Upon coming home, Conor immediately increased his intake from 25% oral feeding to 75% oral feedings. Within 2 months he was off the tube all together. His reflux stopped as well. At about 8 months, 4 months adjusted, we started on rice cereal and stage 1 vegetables and fruits. It was nothing short of miraculous how well Conor did with this. He immediately started packing in the food -- 8-12 oz per meal, and putting on weight. We had no problem switching to formula from breastmilk and to cow’s milk from formula at 12 months.
At about 14 months, 10 adjusted, we started in on stage 3 and finger foods. This is when our problems resurfaced. Conor suddenly went on a hunger strike. He would cry and scream at feedings and was also gagging and vomitting quite a bit. Of the course of two months we’d have to give him the hiemlich maneuver 5 times.
At his next office visit we told the doctor of his lost desire to eat. His weight had levelled out a bit. It was suggested we give him Pediasure to help get calories into him. Once we started the Pediasure his appetite waned even more so, and the vomitting had increased to 4-6 times per day. He was taking in and keeping down about 16-20 ounces total and stopped eating all solid food. That was only 500-600 calories a day!
Conor ended up in the hospital with dehydration on the one year anniversary of his due date. He had lost 2-1/2 pounds in one week and at
We went through months of doctor’s visits, specialists and procedures to attempt to determine the cause of his problems. All the while, Conor continued
Friends, family and aquaintances started giving us all sorts of suggestions on how to get him to eat. What no one realized, was that we had tried everything! Every different food imagineable, force feeding, singing, dancing, punishment, rewards, distraction ... Nothing worked. At one point, we gave up trying to feed Conor in public because it was too disruptive. So, people just assumed we were neglectful and simply not feeding him. Many would offer to feed him for us, "Don’t bother," I would say, knowing the futility of the task. Yet they would try. Occassionally they would succeed in getting a bite or two into him. Success! "See," they would say or think, "She’s just doing it wrong."
Finally, to save my sanity and Conor’s mental health, I quit trying to feed him altogether. The food was always made available, but I just stopped trying to force it into him. Conor turned 2 and was still on his Pediasure-only diet.
At this point, we went to a feeding therapist who evaluated Conor and found he had extremely poor oro-motor skills. He simply could not bite, chew or swallow properly. After months of pushing for one, Conor then had a modified barium swallow test, which revealed that he had dysphagia. A condition that causes liquids to be aspirated into the lungs when swallowed. An earlier endoscopy and pH probe revealed severe reflux and esophogitis. We also felt that Propulsid (Cisipride), a motility dug Conor was taking, was contributing to his vomiting. These things together were what were causing Conor’s feeding difficulites. However, we had taken almost a full year to make these discoveries. Conor now had a full fledged oral aversion to add to the problems.
Conor Learns To Eat
After a year of searching for solutions, we finally had a plan of action. Conor had just begun speech therapy to work on strengthening and developing his oro-motor skills. We worked with an Occupational Therapist to help desensitize him to eating. The feeding therapist recommended a behavioral psychologist who was experienced in feeding disorders in children. We went to a homeopathic doctor who gave Conor a constitutional remedy. Conor was switched back to Zantac for the reflux and discontinued his Propulsid. We started using a product called Thick-It to thicken his liquids to make them easier for him to swallow.
To this end, I am offering tips to help parents of preemies deal with feeding disorders.
I am not a medical professional, so my knowledge is limited to that of what I have personally experienced with Conor. Please consult you physician before proceeding with any of the tips on the following pages.
16 months weighed only 15-1/2 pounds.
his hunger strike and vomitting.
More on Feeding
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