[QUOTE=Shryn King]
There is a baby that may come into Foster Care that was born at 24 weeks. I don’t have all of the details right now; but, I think the baby is up to 4 lbs now while in the hospital; but, is on oxygen, dialysis, a feeding tube and they don’t know for sure, but suspect she’s blind.
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Oh, the poor little lamb! How old is she now? Sometimes high levels of supplemental oxygen can lead to blindness, unfortunately. Or it could be totally unrelated. The good news, I guess, is that blindness doesn’t usually lead to behavioral or cognitive problems later on the way deafness or other common preemie disabilities can.
Not knowing how old she is, it’s hard for me to guess if that’s worrisome or not. Most of them don’t know how to suck for a surprisingly long time - I think Caileigh was near 37 “gestational” weeks before she figured it out. As she gets closer to discharge time, they’ll figure out how best to feed her. Some people finger feed - tape a small plastic tube to their finger and sort of tease it into the baby’s mouth. Sometimes this can elicit a sucking response when a bottle or breast won’t.
3.5 months. She came home 2 weeks before her due date. Once she finally got off the oxygen and stopped with the apnea nonsense, she was discharged. Her greatest struggle was breathing, and that’s still her greatest weakness - every little cold virus seems to turn into bronchiolitis and require a rescue inhaler. When she’s older, it’s very likely that she’ll be diagnosed with asthma, but so far we’re avoiding maintenance therapy. For all the horrible things that could have happened, we were very, very lucky that few did.
She had a very common preemie disease called retinopathy of prematurity (ROP), along with something called Plus Disease. Basically, the blood vessels that nourish the retina grew wonky, and threatened to tear the retina off the back of her eye, which of course would lead to blindness. During the week of her due date, after she’d already come home, we had to bring her back to the hospital for laser surgery to correct the ROP. She had one eye exam a year later and her vision tested as normal. We’re just about due for another check up, so cross your fingers for us.
[QUOTE=Septima]
What advice would you give someone suddely faced with a preemie? What do you wish someone had told you?
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Rest as much as you can and don’t feel guilty if you can’t be at the hospital every day. It took us a while to get that, and we got a bit snarky and dramatic before we realized we were playing the martyr game. Basically, we couldn’t have asked for better, more qualified “babysitters”, so it made sense to spend time with each other, as well as her. Going out to dinner with your husband while you’re suddenly no longer pregnant but you don’t have your baby next to you is really weird. But it really helped the two of us to reconnect and make sure we were on the same page.
Not really, no. It was an emergency c-section due to an infected placenta. We spent a few hours in the hospital trying to figure out what was wrong, but once they identified the problem, we were given about 10 minutes to decide whether to try a c-section or lose the baby.
Aw…my step-uncle was born prematurely, in a cabin in the middle of the woods in Vermont during a snow storm. His midwife sauteed a huge cast iron skillet full of sliced onions and used that to keep him warm until morning came and the snow stopped! Hey, when it’s that desperate, you do whatever comes into your head, right? (Did the puppies make it?)
[QUOTE=Kythereia]
How much contact were you allowed with your baby? How often were you allowed to hold her, sing to her, talk to her?
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Most hospitals have nearly unlimited visiting hours for parents. The only exceptions are during rounds - when doctors are in the room discussing cases, privacy laws mean no one else can be in there - and during the shift change for nurses - again, because they have to tell one another what’s been happening, so because of privacy laws, no one can be in the room. So in a 24 hour period, there were 4 hours I wasn’t allowed in. Other people (grandparents, friends) were allowed in during regular visiting hours, but a maximum of two people at her bedside, and one of them had to be me or my husband. The nurses were pretty flexible about the “visiting hours” though.
Most NICU’s have rooms with many babies in them. Only the very sickest babies have their own nurse, most of the time one nurse will be looking after three or four babies at once. Our room had 8 beds, although they weren’t always full, and 2 or 3 nurses. Since most of the time preemies sleep and grow, this isn’t usually a problem. Once in a while they all decide to act up at once, and occasionally the nurse has to page for help. Since I was there so much and got to know the nurses well, I was trusted to do more than most moms - I was allowed to take her out of her isolette on my own, to start her feedings (although the nurses always placed the tube), to weigh and change her and to “pink her up” when she stopped breathing by slapping the bottoms of her feet or rubbing her back. There were only a few times when I couldn’t rouse her and had to ask the nurse to step in.
With micropreemies, they’re often born with skin so thin that you can see right through it. It looks red because you can see all the capillaries underneath. It’s also very fragile and tears easily. For the first week or two, we weren’t allowed to hold her or stroke her - we could lay a finger on her head or hand and not move it. The nurses put a salve called Aquafor all over her to keep her skin moist and flexible, because she didn’t have working sebaceous glands yet.
Even when I couldn’t touch her, I was there, sitting next to her. Sometimes I’d talk at her, sometimes sing, and sometimes just sit and will her to grow. I was lucky in that I didn’t have a job at that point, so I’d get my son off to school in the morning and spend the whole day at the hospital, get a ride home (I wasn’t allowed to drive for a couple of weeks after the c-section) and meet him coming home from school, help him with homework and make dinner. Then after dinner my husband and I, and sometimes my son, would go back to the hospital for a few hours. The hospital had rooms for breast pumping I could use.
Many of the parents couldn’t make it everyday, or could only stay for an hour or so. I felt sorry for them, so busy trying to run the rest of their lives and having to trust the nurses and the hospital without really knowing what was going on. There was one young couple from out of state - they’d come in from Ohio for a Northwestern football game and she went into preterm labor. So not only did they have to deal with everything I was dealing with, but they both had jobs and a home in Ohio to handle. Their baby was in our NICU for about three weeks before he was stable enough to helicopter to Ohio. It was totally against the rules, but I used to go over to his isolette and coo at him and tell him how much his folks loved him. You’re only supposed to even *look *at your own baby, but I couldn’t stand the thought of him being all alone all week. The nurses very kindly looked the other way, for my sake as much as his, I’m sure.
[QUOTE=OtakuLoki]
What I’d like to ask is what are the general long-term health problems a micropremie will be likely to face later in life, compared to a simple premie?
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Much the same, only the risks are greater. Micropreemies have a much higher risk of cranial bleeds, or bleeding in the brain. These can be harmless, or cause brain damage. Cerebral palsy, deafness and blindess are the most common severe long term disabilities, along with learning disabilities, just like for preemies. And, of course, micropreemies are more prone to various lung problems, since they’re born with undeveloped lungs. Lungs don’t develop in air like they do in the liquid uterine environment, even with surfactant drugs to make them slick. Scars in the lungs and bronchial tubes are fairly common, and can compromise lung function for years, or a whole lifetime. Asthma, as common as it is for all kids today, is nearly ubiquitous in micropreemies.
Not a sheepskin per se, but everyone at our hospital had a very nice, and tiny, fleece blanket, double sided, sewn by volunteers. Soft as can be. They also have these bendable 18 inch wires, padded with cotton fluff and in a cotton casing, which can be bent into a U shape and snugged up around the baby. Preemies like to feel snug, and these (no one knew what to call them!) really helped calm the babies down.
Thanks, by the way. One of my favorite people to see was the guy who did the maintenance on the respiratory lines. He was so cheerful, and so positive. He just brightened my night whenever I saw him. I wanted to tell him that he was just as important as the most well-paid doctor there, but I didn’t want to sound condescending. But it just amazed me how many support roles there are in a hospital, and people who never touch a patient still touch a patient’s life.
nipplesup, thank you for all that you did. I can understand why you chose another path, but thank you so much for doing it as long as you could.
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