Establish frequent and easy contact and communications
Offer developmental and behavioral guidance
Demonstrate trust in parents
See high risk infants as a source of joy
Offer referrals for nutritional care
Provide reading materials about premature infants--especially feeding
Be knowledgeable about issues of VLBW infants
Communicate with others who are providing care and services for the family
Parents who participated in the focus groups expressed strong appreciation for health professionals who acknowledged their needs for ongoing access to health professionals after discharge. It was clear that these families felt that their needs were different from families who take home full-term healthy infants, and health professionals who did not appear to accommodate their special needs were seen as unhelpful.
"I was blessed with having a home health care nurse who came to my house once a week for three or four weeks. There was some comfort in that because my baby was being weighed every week, so I knew that he was gaining weight."
"He's been a doctor to my family forever. Unfortunately when I asked, 'When I call with a question, how long until a nurse or you can get back to me?' He told me it could take up to two days, and I thought, you're out of your mind if you think I'm going to stay at home waiting two days for you to get back to me whether it be a serious question or not."
"I know why they do that--that they try to screen reasons for doctors to talk to patients, but on a baby that's so small and a baby that's coming home like that. I just feel like it would sure by nice to have a physician you can talk to one-on-one when you needed to whether it was an important question or it wasn't--someone who is willing to do that."
"There isn't really any way to call and say I don't really need to come in but I just want to talk about this and tell me if I need to worry."
"I had a couple of phone calls where people call me just to see how I'm doing and I might not think to call them, but they call me and it sparks something and, 'Oh well, since I have you, what about _____?'"
"When we were put in the waiting, or in the room, the exam room and the doctor walked in, he immediately said, 'Oh hi, I met you in the NICU and I remember ______ and you've gotten so big. Do you remember me?' And I mean, it was just like, okay, this guy knows she's a preemie. He's going to listen to me. And then he drew pictures, and he had curves. Everything was visual. He was drawing pictures of how much medicine to give, and giving me these things to take with and he took me out to the receptionist, the nurses, introduced me to them all, about _____. Introduced her. I mean just unbelievable, and that kind of experience is really, really nice. Just where I felt like he cared, like he had time, like I wasn't just there as another person, but that he really cared."
Families valued guidance that was reassuring and developmentally appropriate. Health professionals who understood the issues made the transition from closely monitored dietary intake to a more relaxed feeding situation easier.
"I know that I had a psychologist tell me one time that at first there has to be a bit of good judgment involved in there, but if you let a child eat, they will eat what they need. You can't let them just eat sugar all day long, but if you offer them a plate with protein and fruit and vegetables and all they eat of that meal is carrots, obviously their body needs something like that and then the next time you feed them they need nothing but the protein. By the end of the day, they actually have eaten everything that they need."
"Our home health nurse is very good about reassuring us that we are doing well and that we are doing okay. And I remember the first time that he only gained like, you know, 20 grams in a week. I was scared to death. I thought what am I doing wrong? I kept telling her, he's eating, he's eating, you know. But, then she explained, well, he's doing more developmentally. He's trying more to roll over, he's babbling more. And so when they're doing those kinds of things, sometimes they don't grow as much, you know, it's okay. I think, the way I see it, as a whole, especially when they're born at 26 weeks, that's what they concentrate on is growing and that weighing every day, making sure they are gaining. That's like the biggest goal, you know, that's what gets them off the ventilator. So once he came home, you know, she explained, you know, emphasized a few times with us that if one week he doesn't grow as much that's okay, you know."
Parents truly appreciated the health professionals who acknowledged the importance of the parents' day-to-day understandings of their child, and demonstrated a belief in the parents' ability to meet the challenges of living at home with a VLBW infant.
"One of the best things that she could ever have said to me that probably would make me go 10,000 miles for the woman was, 'until I had kids, I would never had said to this to you. What is your gut feeling and what do you want me to do about it? You live with him day in and day out. Who am I to sit on the other side of this table and tell you what to do? If you want me to run tests on him, I'll run tests on him.'"
"I had one (pediatrician) who was wonderful and told me, 'You were worried enough to call me. It was not stupid.'"
"So I felt just the most important thing for me was just the encouragement to do it yourself. It came down to the point where like, 'you can do it, we know you can do it,' so you need to do it. You know, first-time parents especially and probably even, you know, parents who already have a child . . . it's very scary that it's very tiny and you're always afraid you're going to hurt him."
Despite the fact that they may be challenging to families, VLBW infants are family members with the right to be loved and enjoyed.
"Well, _____'s (a child with significant consequences of diseases of prematurity) pediatrician is absolutely wonderful, and he thinks that she isn't ill and that she's happy and we do a lot of things. We have a lot of fun and that's the best thing to be doing, which I love about him."
Families expressed an interest in talking to nutrition specialists about the nutritional care of their infants.
"I also felt like I had a lot of questions that I could have asked a nutritionist for my babies. I have positive things to say about the NICU but I don't ever remember anyone coming and talking to me about nutrition."
"If a nutritionist could meet with you before discharge and just say you may have feeding problems--here's my number--some kind of a letter or something, because I think that's kind of an overlooked thing. I don't think the nurses up here overlook the nutrition, they're doing NG (naso-gastric tube feedings) and everything, but as a mother you're just so worried about them breathing and living that you're not really thinking about that until you get home and then you find out."
The time of discharge is usually a busy time, and families did not necessarily feel a need for long-term information at that time. However, eventually, most parents found that they needed more information about long-term issues for VLBW infants.
"I went to one of those premature baby support groups and they said well, most premature babies don't catch up in weight gain until they are school age. I have never heard that before and, if that's common knowledge, I should have seen that information somewhere. My doctor didn't know it and books, I've looked for books and they're all about premature babies when they're first born and what you're going to go through in the hospital. Nothing tells me what's going to happen later on. And it's not like I haven't looked for that information. So, I don't know, I think when the baby is first born, there's lots of stuff, the medical community is doing the right thing there, but I think they need to think about the longer term more."
VLBW infants are different from full-term infants and even from premature infants who have higher birth weights. By the time their infants are discharged from the NICU, most parents have become very well informed about the treatment of VLBW infants. It is disconcerting when they feel that they know more than the health professionals they work with do. It is also problematic when health professionals have inappropriate expectations for growth and feeding.
"And that sometimes it's a little disconcerting if you walk into a doctor's office and you know more about your kid's condition and your kid's medication than they do, right, it makes you feel like you need a confidence check, it's a little shaky there."
"Yeah, and my doctor didn't seem to know that she shouldn't have caught up and she kept saying she's not on the growth charts yet, which is a problem. But according to that reading, she shouldn't be on the growth chart. She tripled her weight and that's a lot of weight for any baby, you know, so that should be acceptable. That's what the premature people say."
"Yeah, but even if I was just told not to expect it (catch-up growth) to happen for the next couple of years, that would take a whole lot of worry off of me."
"Mine didn't know about preemies very much, I mean she made an effort to try and find out and talked to people who did work with preemies and stuff. But it would have been helpful to have one who did work with preemies, who knew, you know, not necessarily have to know the technical stuff, but some general stuff to be helpful."
Some VLBW infants receive services from several clinics and programs. Care coordination is often an issue for these families.
"Something else I just thought of that would be helpful in the whole system is to have a way to get WIC, to get occupational therapy, to get the doctors and the nurses, and everybody dealing with your child together."
"I think there are feeding issues and nutritional issues that definitely would be . . . the parents would feel more comfortable. There would be more a focused goal, rather than scattered ideas and issues (from MD, OT, PT, RN input)."