Attention is placed on other more immediate needs than feeding at the time of discharge
Parents liked rooming-in arrangements before hospital discharge
Families may go home before feeding is adequately established
Gavage feedings may be a problem for families
Parents want more information about feeding and about what to expect in the first months
Coordination with the pediatrician who would be providing care was key
Having supports in place was important
There was strong interest in support groups or lay counselors
Some parents were surprised at the feeding issues that arose immediately after discharge because their attention had been directed at issues such as safety and breathing when they thought about taking their child home. Families perceived that this was true for hospital staff as well. One family reported that they arrived home without knowing when their child had last eaten.
"I was more concerned with the breathing instead of the feeding, and all the monitors and such, there isn't any monitor that says "Feeding." You know, that's what you're worried about. That's what you're thinking about, and then all of a sudden, you get home and you think, "I gotta feed him." and all you've been thinking about is are they breathing, and so that's kind of a big shift."
"When my son was discharged from neonatal, the only thing that I can really recall that was important to them was that I knew how to do CPR, and when I arrived there, I was a little bit late because I had things to do at home before I came to get him, and I walked into the room and he was wrapped up and all ready to go--things and all, and I felt just like I was choked out the door."
Parents who had the opportunity to stay in the hospital with their child for a day or two before discharge and take responsibility for feeding during that time had very positive things to say about the experience. In the focus groups, parents who had not had rooming-in experiences often stated that they wished they had been able to prepare for discharge in this way.
"We moved in two nights with him because he had the oxygen, and he did have the feeding issues. Still, he was still very slow to eat. But that was the only reason he was in the hospital, so if I could get him to eat and still grow, they would allow him to go home. So, we moved in two nights and that was very helpful. We had the NICU staff there twenty-four hours a day if I needed help with the oxygen or feeding. He did quite well, he came home after two nights and mom was, you know, I was still nervous (group laughs). We made it through it, once we got used to being at home, in a new environment, he did quite well."
Some families reported that they felt pressured to take their infants home before they were confident that their infants could maintain adequate nutritional intake.
"Yeah, I distinctly remember that when we got released from the hospital, they had just taken the gavage away, and then they send you home and the baby's been doing this gavage thing. Endurance is an issue."
"Someone from the main insurance was calling and saying, 'What's going on?' I don't know, but it really felt like there was this pressure, and they said that in the past they would have had us stay, you know, four more weeks. We got to the point, 'Let's send her home gavage.' Because they were gavaging some of the time. She couldn't nipple every feed either breast or bottle. And you know, I didn't want to do that. And then when my husband agreed to, he would gavage her at home. We were going to do that because we were so sick of the pressure about it."
Sometimes when the only reason for an infant to be in the hospital is an inability to nipple well enough to ensure adequate intake, families are sent home with equipment and teaching to "gavage" feed, or feed their infant through a naso-gastric tube. These feedings and/or the contemplation of gavage feedings were stressful to families.
"...because I didn't know honestly if I could put gavage tube back down. That scared me cause I didn't know if I might puncture a lung or not."
Families expressed a desire to have more information or sources of information and anticipatory guidance about feeding their infants in the first year at home.
"I wasn't afraid to bring home a baby that weighed only three pounds, but I was afraid to bring home a baby that wouldn't eat. And no one sat down and said to me, this is what you can expect when you bring your baby home, these are some things you can do to make it better, this is a number to call if you have any questions, different techniques you can use. None of that was discussed when we were released."
In light of the fact that initial hospital discharge is a very busy and challenging time for families, parents expressed a desire for material and resources that they could use later if they needed to. Many feeding problems developed after hospital discharge, and the nature of concerns about growth, nutrition, and feeding changed as infants got older.
"(I'd like to have) all this stuff on paper, so when we walk out of here, out of the hospital, we can be handed something that would say, 'These are the things you may come across, things you can expect.' And in view, you have a baby that has a bad gag reflex, you have a contact who can say, 'these are the things that seem to work or seem to help best.'"
"Some information I got that would be nice on discharge too would be a little more information on what to expect as far as weight gain in a preemie--even though the pediatrician would say she's doing great, it would have been nice. How great is great? And can we expect her to be a few months behind, according to her adjusted age? and all that. It would have been nice to have some information to follow to gauge it on your own."
Families almost universally appreciated the sharing of information with both families and other health professionals. This applied to nutrition and feeding information as well as the full spectrum of other health and development information. Discharge summaries for community providers were seen as helpful. Families appreciated community pediatricians and other health providers who made the effort to come and see them and their child in the hospital before discharge.
"They gave a really nice discharge summary and all my records. And then they were really helpful when he (the community based pediatrician) came to the hospital too, because he reviewed the curve. And then when I go to _____ with her for her check-up, they sent a report. And so, kind of coordinating the care, I think is really important."
"That was nice because they gave like a three-page summary, everything that had happened to _____. The nurse said, make a copy of this and if you have to go to an ER, take this with you, which was nice."
"And I think having the pediatricians come to the hospital if at all possible would be . . . although he was in contact with the nurse and I felt comfortable with that, it would have been nice for me to have seen him in the hospital. And also helping with the decision of bringing the child home on oxygen or on a feeding tube that would then be the person who takes over the care."
Families appreciated having supports in place at the time of discharge. They were comforted to know that they could call the NICU staff 24 hours a day, but as the time from discharge grew, many families felt that this was no longer appropriate. One issue that emerged was that potential connections with long-term support might be helpful for some families even though they were not perceived as needed at the time of discharge. Parents could not always know what they might want or need by way of referrals over time.
"I remember too that there was so much intervention when I was in the hospital--like, social workers, lactation consultants, nurses and doctors, so many different kinds of people that I was like, enough. I don't want you anymore. Then when I came home, they sent a visiting nurse to my house. The visiting nurse was like, 'Do you want me to come next week?' And I was like, 'No, I've had enough,' but months later, suddenly I really wanted support and there wasn't any."
In some communities, focus group members had not interacted with other parents of premature infants since hospital discharge many months ago. Focus group participants frequently commented on the value of being able to talk about their experiences with other parents who understood VLBW infants. Although the focus groups were scheduled to meet for 90 minutes, parents often wanted to continue talking, and in some groups made arrangements to stay in touch after the focus group.
In some communities there are parent-to-parent programs in place. Families were contacted by other families with VLBW infants while their infants were still very young and in the hospital. Other communities have organizations that meet the needs of parents of VLBW infants for support and education.
"I had a family with a 26 week gestation baby that was already home to see. Yes, they do get bigger. They do grow up. They do go home. Eventually, there is a light at the end of the tunnel. Your child is not going to live in an isolette the rest of his life. You know, it was very reassuring. And they also helped my husband and I with the transition home. Yes. Helped us get on home, helped us with getting some better idea what to expect, the reality--more of it. A lot of the nurses know of the reality in the NICU. Home, unless they've had a premature baby themselves, it's harder for them to explain to the family what that's like. So I felt that was a huge help in the transition home, knowing another family who had already been through, and their daughter was, I think, 13 or 14 months at the time, so they had already been through those first months at home that first year."
"It should be somebody nice with whom you've already established a relationship with while you were in the hospital who knows you."
"And it needs to be a lay person--someone who has gone through it."
"I think the other thing I'd say to medical people is to refer people to Parents of Prematures."