We have been on quite a rollar coaster ride with my 24 week micro preemie daughter
She was born early for no apparent reason? She was normal, for her age. I was as well. (Infection maybe they don't know?)
She has done fairly well, but has had some trouble with chronic lung disease and getting off the vent. Finally in desperation, she was given a considerable amount of steriods and that did seem to help. Last week (she would be 37 weeks) she came off the vent.
She has no other issues other than the vent. All of her other bodily systems and even the eyes seem okay.
But I am scared.
What chances does my daughter have of a "normal" life ????
No one really will answer me. :(
I am a laid back parent of two older girls. We do homeopathy and yes (shhhhh! don't tell!) drink raw milk and naturual things like that. Will this child be destined to depend on medicine and vax shots and all that ???
I know you can't really TELL me any of this, but thanks for listening. . .
Me + DH And E makes three! 3.2.13
I would just take it one day at a time and make those decisions as they come up. Vaxing isn't the end of the world and modern medicine has saved many a life, including that of your sweet babe. Hopefully when she's a little older and out in the world you'll have a better idea of how susceptible she'll be to various kinds of infections and so on and you'll be able to make decisions on a case-by-case basis. Our DDC had a little one born at 30 weeks (not quite the same, but still) and he's developing really well for his adjusted age and his mother is quite crunchy. Obviously, a lot of "crunchy" kinds of things like BFing will be really really important for your little one, so it's not an all or nothing issue. Some "crunchy" things might just pose too much of a threat while others, like probiotics and BFing, might be really important for proper development of gut bacteria and immune system growth.
On a similar note, I would push back a little if you're comfortable on the doctors not telling you anything. Obviously, they can't predict the future, but they should be able to give you rough outcomes for how other babies with vents, for example, have done over time. They need to communicate with you, especially in such a stressful situation. I hope you and your family are doing well under the circumstances. I can't imagine how stressful and scary having a tiny one in the hospital would be.
Beautiful baby girl born 8/13/2012. Little star baby lost at 10 weeks pregnant, 12/18/2013. Currently due 12/13/2014 with a rainbow.
So will your child be normal? Well, just as much as any of us who hope fora normal child. But your preemie-specific issues will end within the year, then you will have a child who may or may not have all the issuesall parents worry about or have to deal with, asthma, learning differences, developmental issues, whatever. And I think attachment parenting in its usual form is great for those issues.
I am a NICU researcher and so while I don't know your specific case I will say that the reason your doctors aren't giving you a concrete answer is likely because they don't know. With micro-preemies there's still a lot we don't know about why some do really well and others end up severely impaired. I would also second what Lily Tiger said and emphasize that vaccinating isn't necessarily an evil, especially not for immune compromised preemies and to remember that without "unnatural" modern medicine your daughter would never have stood a chance.
Strawberry lover, dog-person, New Yorker. (Who doesn't love a jump-roping sheep?)
It's been a month since you posted--how are you feeling? How is life?
There's no way to know where life will take any child, but it's really hard to know with micropreemies. One day at a time is all you can do.
You'll probably feel rather isolated this winter. Staying a bit reclusive is a must during flu and RSV season. It's worth it, though. And yeah, you may find that your stance on vaccines and preventative medicine has changed or is more flexible--that's okay. And maybe being aggressive with breathing treatments early on means that there's lowered risk for problems 30 years from now.
My 28w preemie wasn't able to nurse. So I've been pumping for 20+ months because I'm not willing to forcibly nightwean her. So yeah, she's bottle-fed, but it's on her terms. ;) We co-sleep, though it took me several weeks to wean her off the bassinet and into the family bed.
She's healthy and meeting most milestones. Time will tell whether she has developmental delays that persist. Right now, she's mostly on target, which is all I can ask for. Well, and I'd also really like it if people would stay home when they have crusty noses, but hey, you can't always get what you want.
Chasing DS since April 2007 and pumping for DD March 2013.
Actually I am pretty sure Vax schedules are vastly different for a baby in her situation. You never know she could be fine, maybe have some digestion issues and reflux.
For the not knowing why i would get tested for blood clotting factors. Even with previous pregnancies going well its doesn;t hurt to rule them out. Mine cause preterm labor with no apparent signs of why.
So sorry that I didn't see your post earlier. My twin sons (now 18) were born at 24 weeks. Statistically, micro-premie girls fare better than boys; white babies better than blacks (sadly and mysteriously, from what I witnessed in the NICU, that's not solely a socio-economic thing); and single-births fare better than multiples (presumably due to birth weight). From your post and photo, I assume your micro-premie has the best possible scenario: a white, female single birth, with up-to-the-minute neonatal technology available.
Mine were in a much worse scenario (though not the worst): white, twin males with technology as it was, nearly two decades ago. They suffered retinopathy (detached retinas, from too much oxygen, too early); necrotizing enterocolitis (flesh-eating intestinal infection, from having to digest food before their guts were ready); heart murmurs; kidney failure; a brain bleed; and countless pneumothoraces (holes in the lung, due to stress from the ventilator). In fact, for a while they had to be put into medically-induced comas, so they could use oscillating respirators, which create less stress on the lungs, by forcing babies to take rapid but shallow breaths (like hyperventilating 24 hours a day).
They have been competitive long-distance runners since grade school. They're almost never sick. They wear glasses and are on the milder end of the Autism spectrum. It's possible that their birth experience contributed to that, but it's just as likely that these things are genetic. There's quite a bit of Autism spectrum disorders on their dad's side of the family, and everyone on that side wears glasses. They were both identified with abnormal brain-waves (a risk of seizures), in the NICU. However, each of them has only had one grand mal seizure - both during grade school, a few years apart. They don't even take medication, because arguably one seizure every ten years or so is not worth preventing with daily drugs. I don't know whether the abnormal brain waves are related to the birth trauma, or the Autism.
I was told that if the twins survived and left the hospital, it wouldn't happen before they were 6 months old. But they were ready to go home on their due date. (It sounds like your baby is close, too?) I was strictly admonished to move within a mile of the hospital where they were born, because they were guaranteed to need emergency rehospitalization at least once in the first year. That never happened. Some of their medical team advised that I keep them inside for the first year and strictly limit their exposure to other people. Instead, I listened to their pediatrician, who said get them out in the fresh air every day. Go on walks. Let them be around people and get exposed to germs, build up some immunity. Compared to my next baby (now 5), the twins caught more colds and had worse respiratory symptoms, when they did. But never anything bad enough to consider hospitalizing them. And the older they got, the more rare it became for them to ever get sick.
They were late, with every developmental milestone. I have no way to know how much of that was the prematurity and how much, the Autism. But they did reach each milestone, eventually. They're in regular classes at school, but have a math tutor and resource teacher available and get extra time on tests, etc. When they were younger, they received physical, occupational (fine motor) and speech therapy through First Steps (a federally-funded program associated with the Americans with Disabilities Act) and later, through the public schools. They are in a private (Catholic) high school now, and the resources available to them are as good as, or better than, what they had in public school. Many colleges now offer the equivalent of resource teachers and special ed accommodations (like tutors, large-print tests, or extra time to take tests). Both boys plan to go to college.
Again, neonatology has advanced significantly since my sons were born - and they're Autistic. Your daughter may have no lasting developmental or academic issues, at all. But - especially in those early years - take advantage of any services that are offered to her. She will almost certainly have some developmental delays, simply because at 9 months after conception all babies - regardless when they were born - are at a more-or-less newborn stage of development...yet technically your daughter is also nearly 4 months old, so she'll be compared with babies who already have head control and may be rolling over and sleeping through the night. Such unreasonable comparisons may continue to be an issue, until she's preschool aged. The advantage is that "delays" may qualify her for therapies... which can only help! Even developmentally "normal" babies can benefit from (and enjoy) the type of exercises and activities PTs, OTs and speech therapists do. And it will be an excellent support for you, to have a professional checking in with you about her progress and teaching you good activities to do with her, at home.
When my twins were young, I learned to tune out statistics. They can terrify you. But in the end it doesn't matter what happens to 75% of babies in your baby's circumstance. It only matters what happens to your, one baby - who may follow the statistics, or may be one of the 25% who defy them. There is a lot more peace in accepting that you can't predict her future, and believing that you will have the strength to deal with whatever you must, as it comes.
God gave you this baby. He didn't give her to any other mother. Just you. You are equipped to raise her. Convenient as it would be, you don't need (and can't have) a road map for the process. And really, we never get one with any baby. We can plan to wear them in slings, but get a baby who doesn't like them. We can plan a certain type of education, but it may prove not to suit our child's learning style. We may have beautiful theories about how to raise a healthy, gentle, self-directed child, yet still wind up having to learn how to parent a child who's more aggressive than we'd like; or less motivated to learn...or having to deal with an unexpected disease. You're just getting your surprises early. It will be OK. You will see that sooner, the sooner you let go of your expectations and plans and let yourself learn this, unique child.
One woman in a house full of men: my soul mate: or... twin sons:(HS seniors) ... step-son: (a sophomore) ... our little man: (a first grader) ... and there is another female in the house, after all: our.