Lack of interest or enjoyment in food
Slow feeding and feeding endurance
Reflux and gagging
Day care and respite care
Parental concerns about growth were consistent in all the focus groups. Some infants seemed to be growing well while others were not. Almost all were very interested in expectations for growth and catch-up growth. For the most part, the concern about growth monitoring that begins in the NICU continues for the first years.
"My little one still isn't on the curve, he's below the zero percentile, but he's proportionate."
"At about four months, they weren't gaining weight, they hadn't made the curves yet, so I (everybody told me not to do this) started putting cereal in those little bottles."
"I tried to convince myself that my daughter's small weight was, you know . . . . . . a lot of people are small and she'd be fine, and I tried to let it go, but my baby-sitter said to me, 'last week I thought she was too skinny, this week she's way too skinny,' and she's the one who made me panic all over again. I try not to worry about it."
"Or with the issues for me that came up around feeding came up later when she started solids and kind of the way, the rate, you know, I thought she'd keep growing at this great rate and keep growing and when she stayed thin and stayed thin it was kind of like, now what?"
Shared pleasure in eating and feeding enhances the relationship between most infants and those who care for them. For some VLBW infants, there seems to be little pleasure in feeding. This can impact the caregiver-infant relationship, and usually makes the caregiver's job very challenging.
"She has never enjoyed eating, she doesn't like to eat now. She's still on the bottle simply because I'm such a nervous wreck I don't know what to do about how to give her nutritional needs because if I take the bottle away she is still not hungry. She still does not eat food; food is not important to her and she never or rarely requests to eat. She was 2 in May, and it's still a big issue at our house. That whole feeding issue is a major, big deal at our house. And we try not to make it a big deal, but it's a big nasty word."
"He is now 16 1/2 months old. He's still very uninterested in eating. He showed that from the very beginning."
"His biggest problem in the hospital and still is, is eating. He didn't want to eat. He's 14 months right now and he weighs 15 lb."
VLBW infants are at risk for developing aversions to feeding and other situations that involve the mouth and face. This was not a universal finding in the focus groups, but it came up several times.
"But if he's gagging and refluxing because he's touching it, that's what we're talking. It's one thing not to want to touch it, but it's another thing when you touch it and you're trying to vomit."
"He won't let strangers there, even my mom. It's just kind of like a trust issue around the mouth. He's not comfortable around the situation. It's like so much trauma has been done to his mouth that everything, especially with his mouth is a problem."
This appeared to be a problem for many parents, especially in the first weeks after hospital discharge.
"Feeding went very slow for him, it took him a long time to learn how to eat. And when he came home it was still taking like an hour or better for him to take a couple of ounces."
"So, it was very tiring, we were setting an alarm clock all through the night and taking turns getting up and trying to feed him and he would take an ounce and asleep he would be."
Reflux was a common theme for the focus groups. Several families spoke of experiences with reflux that remained undiagnosed for considerable periods of time. Families felt that untreated reflux resulted in pain for the infant and significant family stress. Other feeding related GI and respiratory problems continued past early infancy.
"She stops breathing and pukes, even though she's a year old, she still had that apnea when she was a year."
"She still has the tremendous projectile puke reflex." (at 2 years)
"They still gag on solid food."
"After discharge and several months later, almost a year later, he was finally diagnosed with reflux disease. So most of my nutrition and feeding issues came after discharge."
"He's always been hard to feed. He has a real sensitive gag reflex. So, anytime he coughs, sneezes, cries too hard, anything... if he's eaten..... It's really hard to explain to a doctor. It's not spit-up. It's projectile. You pretty much do not want to move him while he's throwing-up otherwise you'll have a bigger mess. He is 13 months now, and he weighs 16 lbs. He doesn't eat more than, usually, a 5 oz. bottle. Anything more than that, he'll get sick. He's starting to eat some solid foods, but it's mostly I think play, not really interested in eating it. Just interested in putting it in his mouth and playing with it."
"When we first brought him home he would have reflux, where he would stop breathing and that was scary. I don't think we ever slept. What happens if you are sleeping, he does reflux and bring up the formula and then he gets stuck, and he can't breathe. So you are sleeping with one eye open when he's sleeping with us. He's on medication for that."
"And he kept sending us home saying that we were just inexperienced and she was premature and premature babies are uncontrollable and all these things. And so, we took her into a different doctor who put her on Cisapride and she hasn't cried since. So, it was a horrible, horrible experience and we don't go to that pediatrician anymore."
There are several additional costs associated with having a VLBW infant. Many essential products and equipment are not covered by insurance policies. These may include special formulas, feeding equipment for tube feeding, vitamin and mineral supplements, breast pumps and supplies for milk storage, and special positioning equipment.
"I'd also like to see insurance cover some of these things like breast pumps and like reflux, the wedges and stuff. All that stuff adds up so quickly especially when your baby is early and you're having all these extra expenses you weren't counting on."
Many families were surprised to find that feeding issues continued, or even surfaced for the first time, when they began to add foods to the diet.
"I have given him more baby food than I did my other kids. Most of my other kids just went straight to table food--mashed with a fork, you know, and give it to them. He was a little more gaggy, couldn't take any texture to it. It had to be real smooth."
"I've tried some cereal, he's not ready, and I'll let him make that decision. Knowing that he's eating so much formula, thinking, well he's got to want cereal. There's got to be something I can give him because he watches us eat and he seems to be interested in it. But I gave it to him and he gagged doesn't seem like he could get his little tongue to work on the inward motion so I'll give him a month or so."
"It didn't go smoothly. It was stressful. I really worried about the fact that he wouldn't eat solid food and yet he was obviously hungry because he was eating all that formula. I even tried feeding him cereal out of a bottle which I swore I'd never do because they said don't do that, but I tried. I enlarged the hole in the nipple, and I tried. He wouldn't do it that way either. I was ready to try everything anybody suggested, just to get him to eat some solid food. And nothing worked. I'd wait for a week and try it again and I'd wait for a week and try it again and you know... and finally, I just gave up on it until he started grabbing food off my plate."
"Feeding wasn't a real big problem until we started solids and then we started having problems."
The early pattern of feeding small frequent meals in conjunction with ongoing concerns over dietary intake and growth makes the transition to regularly scheduled meals difficult for some families.
"So I feel like I've had her on that grazing thing, which I don't know if I've created a lot of her things. I don't know if I've exacerbated the problem."
Infants and children who have significant feeding problems can limit options of parents who need day care or respite care.
"We have yet to find someone, especially in the beginning that would handle his feeding issues. I mean, he took over an hour to eat just a couple of ounces when he first came home, and he was very slow because he would tire. We would be putting the bottle down and playing with him, waking him up, changing his diaper, or just letting him rest five, ten minutes and then trying to awaken him and getting him to eat the rest. So, finding someone that was comfortable and knowledgeable to deal with his nutritional issues wasn't, it wasn't available to us. And yes, you have respite care and things like that, but they're only available certain times. So, making this information available and finding some way to educate other child care providers about those feeding issues to allow the other parent to work part-time, you know, takes a lot of stress off financially. Even my best of friends, you know, won't even try to feed him. I mean, they were like, 'I was there, that monitor went off, his heart slowed.'"