I have read here before (although I can’t find the thread now) and have also heard from my SIL (their son was born at 34 weeks) that the NICU nurses told her to hold the baby at arm’s length when bottle-feeding (not snuggled into the crook of her arm). This seems so counter-intuitive, especially with such tiny babies who need warmth and human contact.
WhyNot, did you encounter this? And can anyone explain why the nurses would recommend this?
Mom of a 34-weeker here (Moon Unit)- barely a preemie by some counts though she did go through the respiratory issues, and also feeding issues. I had pre-eclampsia and was hospitalized for 2 days; they were all set to send me home based on my bloodwork on admitting day and also my BP showing good control on bedrest, but then they ran blood work which showed it was turning into full-blown HELLP syndrome. So I went from “going home in an hour” to “having the baby in an hour” in, quite literally, one minute. :eek:
She had more respiratory issues than they expected - in hindsight, I should have insisted on steroids the minute I got into the hospital - so wound up on a ventilator. We were in a Level III NICU (not sure which sub-classification; probably 1 or 2; they did have some micropreemies and Moon Unit looked enormous next to them) so they had the staff and equipment to take care of her. Interesting that you were able to kangaroo Caileigh while she was still on the vent - I was not able to hold my daughter until she was 6 days old and extubated herself (a sign of things to come - she’s got a mind of her own!). This was 10 years ago so things clearly have changed.
Most of the NICU staff was wonderful. One nurse I wanted to deck - she was fairly snotty. One doctor spent 15 minutes lecturing/scolding me for daring to express an opinion regarding possible alternate feeding mechanisms to promote Moon Unit’s ability to breastfeed. Similar “deck” urges there. They paid lip service to promoting breastfeeding but didn’t do much to support it, though they were very good about only feeding her my milk vs. formula. Like you, I was giving “hi-test” stuff with lots of cream, though unlike Caileigh, Moon Unit porked up quite nicely. I think my milk quality was because we were dealing with other stresses (Dweezil’s autism diagnosis) and so we were self-medicating with high doses of Breyer’s ice cream 
Possibly my biggest beef was when they discharged her. I was told she was being discharged, on a Sunday afternoon, by a nurse I’d never met before. The next day, when they sent her home, I was given a generic 1-page instruction sheet with no further info than that. I was terrified! In hindsight, I guess they felt she really needed no further special care at that point (she never had apnea/bradycardia issues and was, with encouragement, eating enough) but it was still pretty frightening to have this kid who, 10 days before, had been critically ill, send home with barely a farewell wave!
As you’ve noted - asthma is indeed an issue here. Not a surprise, really; between her prematurity, the fact that she had RSV at 9 months, and the family history, it was pretty much a given. We’re lucky so far that she’s never had a serious flareup and in fact has only this summer started using a maintenance inhaler (inhaled steroid) routinely. Prior to that we kept one around and started her on it the minute she developed a cold.
She suffers from no intellectual impairment (has tested out as gifted) and is no more physically impaired than I am (well, that means major klutziness, oh well 
) but does have anxiety issues and some degree of ADHD-like behavior. So all in all we count ourselves fortunate.
And now that I’ve written a novel, some questions:
What sort of followup do they do nowadays for Caleigh, above and beyond routine toddler well-child visits? Routine developmental assessments or anything?
Do they recommend any sort of modified vaccine schedule for former-preemies?
How is your daughter’s eyesight these days?
Did she ever learn to breastfeed? Moon Unit did, finally, at 4 weeks old and through no fault of the hospital staff or the three lactation consultants I met with; ultimately what worked was finger-feeding, which I stumbled across on the internet while on bedrest before she was born. And holy cow (sorry!) what a relief that was! The previous 2 weeks were a blur of “attempt to breastfeed. Give a bottle. Pump. Try to sleep for a half hour. Attempt to breastfeed. Lather. Rinse. Repeat”.
Any particular cluelessness on the part of family / friends? Any support you wish they’d given that they did not? My in-laws could not come to help when we needed it, but the minute they heard she was coming home from the hospital they announced “We’re coming to see her THIS WEEKEND”. I’m still, 10 years later, PISSED about that.
Uh-oh. So you’re saying she might be a Doper? 
Yep, it does seem counter-intuitive, but we were taught the same thing. And a little experience proved them right. The thing with preemies is that even when they learn to suck, they still have to coordinate sucking, swallowing and breathing, like **Mame **says: “The suckle ability is a developmental stage - the baby needs to be able to suck, swallow and breathe, and do it in the correct order. I still remember the look on my daughter’s face after she would latch - you could almost see the thoughts “suck, suck, suck…what’s next?, YES!! swallow…what’s not right? what’s not right? what is it? what is it? Oh yes! (enourmous gasping breath) BREATHE” and repeat.” (That made me laugh so hard 'cause it’s a perfect description of events!) So you don’t want them all cozy and half-asleep. You want them alert and at attention so they don’t drown themselves in milk. Also, preemies are more prone to reflux than full-term infants, and feeding them in a near- or fully upright position means things stay down better. Also, holding them on your lap and holding the back of their heads in a C-clamp with your forefinger and thumb means you have better control of both the bottle and the baby’s head, so you can adjust angles and thrust better. Here’s a picture of Caileigh’s first bottle. BREATHE" and repeat.) A nurse is giving it to her, showing me how it’s done. We refined the technique over time to be what Caileigh needed - eventually we found a fully upright position even better for her. That picture was taken on April 18, so she was 2 months and 9 days old for her first bottle.
She was on a vent for a full month, and extubated (pulled out her own ventilator tube) herself twice. March 9 was when she was first put on a CPAP after the first self-extubation (CPAP = Continuous Positive Airway Pressure - it’s a machine that forcibly blows air into the nose or mouth, but there’s not tube down into the bronchus like with a ventilator. It’s considered less invasive and a positive step when the baby is ready for a CPAP.), although she did have to go back on the vent a few days later. I don’t remember when she came of the CPAP for good, although I don’t see it again in pictures after March 14, so it must have been somewhere in there.
So, anyway, yeah, a full month on the vent, but she got strong enough to be handled very slowly and gently. The first Kangarooing was on Feb 19, so she was 10 days old, and we were only allowed 1 hour every other day. They just had one person hold her breathing stuff while another moved the baby so that nothing wiggled out of place, and then taped her tubes to my shoulder.
Ooh, there was one agency nurse (agency nurses are “substitute nurses”, they don’t work for the hospital full-time, but come in when they’re needed, and often work at several places.) who didn’t know what the hell she was doing. She just stood there as Caileigh went apneac and d-stated (the oxygen level in her blood got too low because she stopped breathing) and turned blue, until I bodily pushed her away to rub Caileigh’s back. Then she said, “Oh, here’s the problem, there’s water in her CPAP line!” and PULLED THE EFFIN’ LINE OUT OF THE MACHINE!
As the respiratory therapist (emergency call) pointed out, there’s supposed to be a few drops of water in the line. There’s water in the air mix, and the drops in the line are the excess water kept safely down in the u-bend of the line, not shooting up into my daughter’s lungs.
Jackass. She was the only nurse I complained about, and told the charge nurse I never wanted her near my daughter again. And I never did see her again.
She’s on a regular routine for well-child visits, and she’s part of our state’s Early Intervention program, which provides developmental assessments and therapy for low or no cost. She sees a physical therapist once a week and a speech therapist twice a month. They have to do biannual reports, so that’s when she’s formally evaluated. Early Intervention will end when she turns 3, so we’re in the process of transitioning her to the local school district with an IEP which may entitle her to therapy services through the school.
The hospital also has a developmental psychologist who does an annual assessment, both for my peace of mind and for their own follow-up studies. She’s a bit of a star there, and that’s when we go to visit the NICU and remind the staff why they’re doing what they’re doing.
We have, at this point, annual exams with her opthamologist for vision screening. If she needs glasses, he might recommend more frequent visits, I don’t know. In fact, I need to call and schedule that appointment…
No, none at all. I was not happy with this, and found a doctor who would look at her adjusted age (from her due date) instead of her actual age for figuring out her vaccination schedule.
So far so good. Behaviorally, she seems to see fine, although she’s not catching onto colors like I hoped, so next time we see Dr. Rabiah, I’m going to ask him if there’s anyway to test her color vision. The only color she can identify is red, and calls everything else orange or green. I don’t know if this is a vision thing or a language thing.
Well, we thought so. We finally got a latch and what looked like a good feed for one month, when she was about 6 months old. We were ecstatic, and I packed away the breast pump (but I was traveling and camping at the time, so I didn’t return it to the hospital). It turned out, though, that she lost 2 ounces and gained 2 inches in length, which was a red flag that she wasn’t getting enough milk. When I took out the pump again, I was only able to pump less than one ounce at a time. So we went back to bottles and pumping. With lots of Domperidone, I got up to about 2 or 3 ounces at a time. This was when we supplemented about half and half with preemie formula. I may be the only mother on the planet to bring a bottle into a La Leche League meeting and survive to tell the tale! 
The only thing that really pissed me off was my brother-in-law telling someone else (maybe his mother?) that if I had gone to “a real doctor”, instead of a certified nurse midwife, that none of this would have happened. He knew this, you see, because his wife’s infertility specialist (who I’ve never met, much less shared my medical file with) told them so. It was a burr under my saddle, I admit, mostly because I’m constantly defending my use of alternative medicine to the family - until, of course, they call me to find out what herbs to use for their illness du jour. But what really bothered me was that he had my husband, his brother, blaming himself for “letting” me choose a midwife - who was, in fact, as Western trained and certified and qualified as any of the doctors we saw in the hospital. The only reason she wasn’t part of the final medical team was that she didn’t have admitting privileges at the closer, safer, more advanced hospital she sent me to. (They did do a phone consult with her, but she wasn’t in the building.)
Thanks for the response WhyNot. My daughter spent a couple of weeks in hospital (2 days in PICU) shortly after she was born, due to a brain haemorrhage which caused seizures and apnoeas (she is 6 months old now and is ahead of the curve developmentally, although she will be on epilepsy meds for a while yet). Here is a pic of her in the humidicrib, waiting for ambulance transport to the PICU. I know the heartache I felt in those few weeks must be multiplied many times for parents whose babies are so tiny and fragile.
Congratulations on doing such a great job with your daughter, and thanks for starting such an interesting and enlightening thread.
Oh, look at her, the little dear! My goodness she looks, for all the drama she caused you, just healthy and pink and gorgeous!
I think, with the exception of Dunawake, that my preemie is the oldest accounted for here. My daughter, Doe – who was 20 years old in June – was a 27-weeker, weighing 2 lb. 9 oz.
She did end up with some permanent problems (Cerebral Palsy to be specific), but is healthy otherwise.
I’m happy to answer any questions about ‘grownup’ preemies.