Parents of older preemies - how did it turn out? - Mothering Forums

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#1 of 81 Old 08-18-2009, 01:00 AM - Thread Starter
 
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I have in the last year quietly left several preemie parenting forums and mailing lists because I was getting tired of wading through all of the negativity. I understand that many parents are struggling with severe issues and need places to vent and discuss where other parents will understand, I really do. I've just finally learned that those aren't the best places for me.

Some background: My DS is now 19 months old, and was born at 29w 3d due to severe pre-e. He was just under 2 pounds at birth, but breathed on his own from the start and had no setbacks in his 53-day NICU stay. He just had to grow and learn to eat, and so he did. He's been happy and healthy ever since, and is almost caught up to his actual age developmentally. After 6 months of hard work we were able to transition to exclusive nursing, and he's still nursing. With the exception of some extra doctor's appts for mild (now resolved) ROP, he has had a very normal infancy, with no marks left by his prematurity at all.

Yet. I know it's not over, but I try not to think that way because I just want to be in the moment and enjoy this wonderful time with him. It took us almost 6 years to have him, and then the pregnancy was cut short, and I am so, so grateful for every moment. I don't want to think that some major issue could be lurking around the corner, but if it happens, it happens. I just don't want to waste precious time worrying about it now.

And this is the issue that I've been having with preemie communities I've been in. It seems like every time I get in a conversation with someone about how my son is doing, I get a stern reminder that we're not out of the woods yet; that many preemie problems don't pop up until 2, or 3, or 5 -- it's always some age that's just out of reach. It doesn't matter how many of those "milestone" ages we pass; there's always someone waiting to tell me how everything seemed fine until their child turned 3, and now that child has Asberger's, or just got a feeding tube, or still can't speak. Et cetera.

I really want to hear stories about preemies who didn't struggle, whose infancies and toddlerhoods were uneventful, and whose childhoods continued on in that fashion. I hope it isn't insensitive of me to ask for that here, but I'm starting to wonder if it's possible that we will escape this relatively unscathed, or if I am being hopelessly naive to think that my son's prematurity was just an extra-difficult way to come into the world. I tell myself that the parents whose children aren't still struggling with preemie-related issues are not represented in the preemie parenting forums, have moved on to other things, but I have no idea if that is true.

Anyone?
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#2 of 81 Old 08-18-2009, 11:59 AM
 
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I have a 4 year old who was born at 30 weeks. As far as we go, it is so far so good. Now, we are having issues with his teeth and some minor speech stuff related to his prematurity, but my mantra has been "if that's the worst we get out of 10 weeks early, we'll take it!"

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#3 of 81 Old 08-18-2009, 12:21 PM
 
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I have 3 preemies- 5 year old twins born at 32w3d and a 2.5 year old girl born at 29w3d.

We really don't have any ongoing issues here. My 5 year olds will start homeschool K this year. My dd is ready but my ds we might hold off on. He has quite a time concentrating for more than a couple minutes. I worry they might want him on medication in a school setting but he should have been born in August which just barely meets the cut off for K here so if we were sending to school I think I'd hold him back. Dd is ready though so that would be a tough decision to make.

My 2.5 year old talks up a storm. She can say sentences that are up to about 5 words in length and has hundreds of words she says. My 5 year old ds I thought may need speech (still kind of do I may get an eval for him) but I don't know if it is just because of prematurity.

The main thing I worry about at this point is my dds ability to have children of their own. And we won't know about that until they are much older.

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#4 of 81 Old 08-18-2009, 12:31 PM
 
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I have a 5-year-old 31-weeker and we've had zero problems. Zilch. Nada. You'd never know the kid was a preemie. No eyesight problems, no speech problems, no motor problems. He also had a very straightforward NICU stay, just on the vent for a little bit then had to learn how to eat.

His full-term 1-year-old brother, though, is currently in PT for a gross motor delay

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#5 of 81 Old 08-18-2009, 02:40 PM
 
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We have two preemies, Micah who was born a 35 weeks and Zephan who was born at 31. Micah is now 2 1/2 and is developing normally. The main thing we've noticed with him is that he still get sick more easily than other kids He learned how to crawl and walk several months later than his full-term older brother. He is also small for his age. But overall he is a healthy, delightful little boy who is very normal!

Zephan is just 9 months old, but he is doing very well too. Breastfeeding, growing, etc. He's catching up quickly on his developmental milestones and I'm not worried that we'll be very far behind by his first birthday. I'm guessing that through the winter, he will have more trouble with colds and things.

I was a 34 weeker and other than having very sensitive feet as a child, I don't think there have been any ongoing issues!
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#6 of 81 Old 08-18-2009, 11:25 PM
 
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Originally Posted by liberal_chick View Post
I have a 4 year old who was born at 30 weeks. As far as we go, it is so far so good. Now, we are having issues with his teeth and some minor speech stuff related to his prematurity, but my mantra has been "if that's the worst we get out of 10 weeks early, we'll take it!"
This - with our 4 year old 31 weeker. She has enamel hypoplasia, was slightly speech delayed and did have gross motor skill delays which required physiotherapy but in general she's doing very well.
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#7 of 81 Old 08-19-2009, 02:39 AM
 
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We have preemie teeth.

I can imagine which forums you are referring to. My disappointment with other preemie forums is what lead me to MDC, as I wanted a "normal" attached relationship with my DD (born at 28 weeks) and this NICU forum was bent toward that. We have followed up with different services pretty regularly and consistently (we just had our last eye appointment for ROP- she was never treated but everyone wanted to see her "just one more time"). We followed up with the developmental pedi and early intervention in our city until she turned three.

I try to remember than many things can contribute to any difficulty at any time. How will you know something is related to being a preemie? If my DD was "destined" to have a certain IQ, and because she was born nearly an entire trimester early, she takes a hit of 5 points, seriously, is that all there is to worry about? For the record, DD is amazingly physical and coordinated, although she decided not to ever crawl. She didn't really talk until 15 months actual age, and she still struggles with pottying. Are any of these realted to prematurity? Who knows? Am I grateful for her every day? Yep. Do I rail NICU moms for being grateful their kids are healthy? No- people who do have some problems to work out of their own... One of my online NICU mom friends (who incidently left a certain preemie website for the reasons you're unhappy about) has a former 23 weeker who is 5 years. She is a little short and wears glasses. Otherwise normal. Another mom I know of had a "healthy" 32 weeker who died at 15 months because of Reactive airway disease.

In addition, I think htere is a yahoo group for parents of healthy preemies, but no one tends to write on it. Another popular preemie group has hundreds of entries a day, and it's really heavy on the doom and gloom. I got something out of both of them at different times in our journey.

Boy this is long- what was your question?

Hope that helps.
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#8 of 81 Old 08-19-2009, 04:36 PM
 
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Well my now 4 year old daughter was in the NICU for several issues although techincally she was not a preemie since they induced me at 37 weeks.

She doesn't get sick any more often than her peers. She mastered her physical milestones within time. She is taller than average. She eats a variety of foods. She can run, climb, ride a tricycle, etc. She has some learning differences especially with focus and distractability but we got help through Early Intervention and now through the school system. She's making steady gains and doing well. She speaks in full sentences. She likes to have books read to her. She likes exploring and going to preschool. On a recent standardized test, she scored academically and cognitively ahead of her actual age.
I think DD will be fine when all is said and done.

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#9 of 81 Old 08-19-2009, 04:50 PM
 
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I have a 33 weeker who will turn 10 next month. She had a fairly short NICU course and other than being slow to grow for awhile, she did well as an infant. She walked and talked within normal times, and had no speech issues. She is bright - we started homeschooling her when she was 4, and she is now a year ahead.

The only thing that people (doctors) still comment on is that she is very small for her age. Not off the chart small, but small. Her 8 year old brother is bigger than she is. However, I don't think this has a darn thing to do with being premature, she was just meant to be a small person!

Honestly, I don't think that anyone who didn't know she was a preemie would ever guess she was.
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#10 of 81 Old 08-19-2009, 06:27 PM
 
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I have a 32 weeker that had IUGR. So she was 2lbs 6 oz, 15 in.
Scored a 1 on her apgar, was blue and listless.

She will be 4 on Sept 12th. She has hypertonia(mild) which she has had since birth and mild ASD ( This has nothing to do with being a preemie, its genetic at our house)

Other then that it has been uneventful. Oh! She does have "weak teeth" so needed some crowns at her appt. I guess this is common with preemies.

I also have a 34 weeker that was 4lbs 6 oz. He will be 16 in Jan. Other then the girls driving me crazy looking for him, he is a "normal" teenager. It did take for him to catch up on his milestones til he was almost 2, but after that nada problems.

Dont let other peoples stories or "predictions" worry you, we are all on our own journey

My cousin had boy/girl twins that were born at 1lb and 1.5 lbs. Her DD is almost 9 and ZERO problems. Her brother wasnt as "lucky" but all his problems were evident at birth or shortly thereafter.

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#11 of 81 Old 08-19-2009, 06:37 PM
 
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It's really interesting that several people mentioned the weak teeth. My daughter has weak enamel and we go to the pediatric dentist pretty regularly to get a coating. I never connected the condition of her teeth to her early birth.

Normal is just a setting on your dryer.
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#12 of 81 Old 08-19-2009, 06:46 PM
 
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It's really interesting that several people mentioned the weak teeth. My daughter has weak enamel and we go to the pediatric dentist pretty regularly to get a coating. I never connected the condition of her teeth to her early birth.
I had never heard of it, until her ped dentist told me he see's it all the time in preemies. So I came home and googled it. LOL

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#13 of 81 Old 08-20-2009, 10:47 AM
 
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My DD was born at 32 weeks, and she will be 4 yo in two weeks. She was in the NICU for 4 weeks - we were fortunate enough to get the steroid shots for her lungs before she was born. I had PRoM, so we had advance warning. She was tiny for the longest time, but her growth really took off between the ages of 2 and 3. Until then, she was in smaller sizes for her age, now she's perfect in a 4T. She has had two eye surgeries for strabismus and wears glasses, but she may be able to stop wearing glasses soon. We have an appt. this afternoon to see how her eyes are doing. Other than that, and we really can't tie that to prematurity, she's a healthy, thriving child. She seems to be very physically adept and agile, and her greatest goal in life is to keep up with her big brother! I've been blessed by every day I've had with her, and I'm kind of thankful for those extra 8 weeks.

Leslie, Mommy to DS(8) and DD(almost 6) :

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#14 of 81 Old 08-20-2009, 01:48 PM
 
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DS was born @ 33 weeks due to severe pre-e. (21 days inthe NICU, breastfeeding apnea for nearly 2 months, seizures, etc.)

He's now two years old and things are going GREAT! He's a bit small and has preemie teeth, but he's absolutely fine in all the other areas. He has the speech patterns of a much older child and an amazing sense of humor. He rarely gets sick (knock on wood). The whole experience left a lasting impression on us, but it made us the family we are today.

"In the depth of winter, I finally learned that within me there lay an invincible summer"
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#15 of 81 Old 08-20-2009, 06:46 PM
 
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My 34weeker(5lbs 3oz) is now 4 1/2 and 38lbs and was doing amazingly well in preschool last year and is above average in her verbal skills and after the first year did everything right on time developmentally. She had a rough first year with illness but she's slightly above average for height and perfectly average for weight now and besides some lingering sensory issues, she's perfect. Someone outside the loop would never know she was born early. Her nicu stay was short but complicated with sepsis, however no breathing issues and only minor feeding issues.
My 33weeker(4lbs 12oz) is 19months and a ginormous 26lbs of chubbiness and walking and talking in 2 and 3 word phrases. She also has been plagued by illness since birth and we struggle with colds going to her lungs constantly and very high fevers whenever she's sick(ie, 104.5 axillary on average) despite breathing on her own from day 1. But developmentally she's right on target and above average in height and weight. We will see what the next few years bring but other than struggling to keep her healthy and free of fevers and breathing treatments, she's perfect. Given her size, you would never know this kid was almost 2 months premature.

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#16 of 81 Old 08-24-2009, 01:13 AM
 
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My daughter will be 4 in Dec. She was born at 26 weeks (1lb 10.5oz). She spent 3 mos in the NICU and she was seen by therapists through early intervention. In her first yr her pt swore she had spastic quadriplegia and that she would not walk.

She was behind in milestones for her first yr. She couldn't roll over very well or sit up but at about 11 mos she suddenly snapped into motion! She HAD to see what her siblings were doing and nothing was going to stop her At 13 mos she was walking and she hasn't stopped since! She is as bright as a button, happy and always in motion. I haven't taken her to a Dr (touch wood) since she was 2 and she hasn't been sick at all. She is social, eats well and is of a good size....good height but slim. I don't think there's any sign (besides scars on her wrists and arms) to indicate that she came into this world so early or tiny!

I think there are quite a few stories like ours but maybe you don't hear about them as much because those aren't the families who need support/advice w/preemie issues?

mum to 3, 8 yo dd: 6yo ds and 4yo dd
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#17 of 81 Old 08-24-2009, 03:55 PM
 
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My 32 weeker (4lbs 9oz) spent 19 days in the NICU: vent for 10 days, then nasal air for a week; no other major issues besides preemie lungs. He's now almost 3 and in perfect health. He gets the colds that go around, we all got Norovirus last year, but he's very healthy. He hit all his milestones on time. He's the most verbal and articulate 3 year old I know. He's a bit small, but who knows if that's a preemie thing or not. He also has preemie teeth. Oh, and eczema - but again, could be a preemie thing, but maybe not.
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#18 of 81 Old 08-28-2009, 08:02 PM
 
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My 32-weeker (also due to severe pre-e) spent 6 weeks in the NICU but was a really good grower. He transitioned to exclusively breastfeeding from EBM at about 4 months. He has gross motor delays and didn't walk until a week and a half before his 2nd birthday despite being in physical therapy since 11 months, but while he is still slightly delayed, it's not as obvious anymore.

He started talking early and hasn't stopped! He is in preschool and loves it. His vision is excellent and he's very observant. He has a crazy good memory that kind of freaks me out sometimes, LOL. At 4 years old, he's at the 25th percentile for height and weight. People can't believe he was a preemie. He's had his share of colds and a couple of stomach viruses, but overall he's extremely healthy.

He wouldn't potty-train until this summer (!), but he's a strong-willed child, so it wasn't surprising.

I don't think even full-term healthy babies are "out of the woods" at any certain age moreso than preemies.

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#19 of 81 Old 08-28-2009, 08:08 PM
 
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my half sister was born 7 weeks early and has had no major complications she does have asthma but then so does my dad, shes now nearly 6 and a mouthy little madam.

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#20 of 81 Old 08-29-2009, 10:54 PM
 
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My oldest was just barely early, at 36 weeks, and is totally normal and healthy now. She didn't have a NICU stay, came right home but was jaundiced and sleepy and had some nursing issues at first. She's nearly 8 and doing very well in school and is a terrific kid.

My younger daughter was a 33 weeker and spent just over 3 weeks in the NICU, mostly as a feeder/grower. She'll be 5 in December and although small for her age (but my family is mostly small, and I'm 5' tall and around 100 pounds) she is doing great.

Developmentally I think she is amazing. She's learning to read right now and is extremely verbal. She doesn't have any physical or other delays that we can see, although it took her a really long time to learn to walk and her handwriting is really messy so I sometimes wonder about her fine motor skills. She's very cheerful and social, and a really fun kid to be around.
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#21 of 81 Old 09-01-2009, 09:47 AM
 
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My 29-week twins were in the hospital for 9 weeks, moderate and severe RDS, and the one with severe came home on O2 for another 3 months. They are 3.5 years old now and are doing wonderfully. No developmental delays, no sensory issues, and healthwise they are very strong. They both sometimes wheeze with a cold, which is really the only physical artifact of their prematurity that we're aware of (other than all those little scars...) We thank our lucky stars every day.

Betsy, mama to beautiful, strong MZ twins Lillian and Kate, born 11 weeks early on January 10, 2006.
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#22 of 81 Old 09-04-2009, 10:22 PM
 
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My beautiful DD was born at 31 weeks with IUGR (2.5 pounds) owing to severe pre-e. She spent 48 days in the NICU, with the usual rollercoaster of ups and downs.

When she was discharged, we were told she had a 75% chance of eventually (by school age) developing developmental delays, learning disabilities, or low IQ, owing to her intrauterine environment. I admit I spent several years hyperanalyzing everything she did, waiting for the other shoe to drop.

By the time she was about 4, I relaxed.

She is now almost 8 years old. She is the tallest child in her 2nd-grade class. She is in the gifted program at school. She is almost enever sick. She is healthy, happy, outgoing, and wonderful. I almost never think about her being a preemie anymore, rather than it being constantly in the back of my mind. I wish every day that I could have seen how she would turn out back when I was on hospital bedrest. I would have saved myself a great deal of anguish .
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#23 of 81 Old 09-05-2009, 11:18 AM
 
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My twins were born at 29w5d. (now are 6) They had an extremely long NICU stay for their gestational age. They REFUSED to eat from the bottle or the breast, so the were in the NICU for 11 weeks.

Anyway, DS had a moderate expressive speech delay which with the help of speech therapy was resolved just before age 5. He is still in speech therapy for articulation issues, but my full term neice is in speech therapy for the same reasons. So is his articulation related to his prematurity?? No so sure when I see the same thing with my neice.

DD has had a few more on going issues. She had low muscle tone for awhile, therapy took care of that. She was "late" to walk, but could climb mountains (I swear if given a chance) at 13 months. She has feeding issues and was in feeding therapy for a year (undiagnosed reflux, and swallow issues that were related to having the og/ng tube for 11 weeks) Therapy was a great sucess and she is now eating whatever you give her. Her favorites now include sashimi, squid salad, mussels, mushrooms, shrimp, and cavier. She supposedly was speech delayed.. wow she caught up 6+ months of being behind in less then a month... Don't think she was as delayed as they said she was.
She is small (around 10% for height and weight).. well guess what she was small when I was pregnant with her and she is small now. I think had she been full term she would have been small.
The worse thing that we are dealing with is awful preemie teeth. She has had 7 baby root canals, 7 silver caps, 1 with a procelin crown, and about a dozen fillings.

We are still dealing (and most likely always will be dealing) with reflux. But if these are the only issues that we are dealing with I am so lucky compared to what could have happened to them.

Yes I still worry about them, and I am worried about learning disabilities, but I no longer let things like that control my life with them.
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#24 of 81 Old 09-06-2009, 11:52 AM
 
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Lilly was born at 29 weeks weighing 1 lb 13 oz(IUGR). She is almost four and other then being really tiny, she is healthy. She was in PT and OT for the first couple of years, but now she is developmentally fine.

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#25 of 81 Old 09-06-2009, 12:06 PM
 
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Sorry, not a preemie mom, but just thought I'd mention that when it comes to community groups, you will get a higher concentration of people who's kids have more problems because they need the support. A parent who's child has little or no problems rarely needs support like that so doesn't join the groups. If that makes any sense. My DD has a brain injury and I found that the yahoo groups were filled with the most severe cases....the kids with mild cases who didn't have all the problems were out there...just not on the groups.

Hope that makes sense. I'm sure there are TONS of preemies that do just fine. You just may not necessarily see them in the support groups.
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#26 of 81 Old 09-08-2009, 11:35 PM
 
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My boy was born at 35 weeks, even though I kept trying to insist he was about 36 weeks, the dr's still called him 35. He spent 2 weeks in the nicu. A week on oxygen and a week feeding and growing. He is 16 months now and has perfect, sometimes scary, gross motor skills. He won't speak besides saying mama and dada, but he is a boy and likes to grunt and point like most men I know. He understands language perfectly and can follow directions. The kid has an amazing immune system and has only had 2 fevers since he has been born with 2 touches of the sniffles.
My best friend had a 32 week daughter who spent 4 weeks in the NICU. She is sooooo healthy and bright. Unlike her full term brother who has tubes in his ears, rsv and pneumona already by 12 months old.
You just never know.
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#27 of 81 Old 09-11-2009, 06:40 PM
 
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My son just turned one last month, although he will be adjusted one next month. He was born at 29w 6d. He was off the charts at 4 lbs. He stayed in the hospital for 58 days (although I think that babies in Canada may stay longer due to our Universal Health Care). His major issues were Jaundice and an umbilical hernia. He had feeding issues. But so far I have not seen any cause for concern. Not that I do not worry. I worry all the time and look for problems when they do not exist. Every possible problem I equate to his prematurity. Every child is an individual and statistics are just that.
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#28 of 81 Old 09-11-2009, 06:57 PM
 
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My baby sister was born at 35 weeks and came home the day she was born. She had some jaundice and was a bit sleepy for a few weeks but was otherwise healthy and grew fine.

She had some slight gross motor delays growing up (walked at 18 mos.) and had some vision therapy for a while but they did not affect her life much and she had a very normal, happy childhood, did well in school and just got married this summer.

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#29 of 81 Old 09-12-2009, 07:04 PM
 
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I completely see where you are coming from! We had it up until recently, in the back of our mind to really watch our former preemie. That is until we got for the uptenth time= "YOUR DD WAS A PREEMIE???" or "She was under 2 lbs????". My Maggie was 810 grams or 1 lb 12oz at birth. She was right under 25 weeks so technically a 24 weeker but really a 25 weeker.

Maggie is 3 1/2 and is one of the taller girls in her class. She also is taller than some 4 yr olds. The only help she has needed was speech for about a year. But the Speech people to credit it not to being early, they say it could be anything from being a 2nd child to just needing a boost. Now she talks nonstop. Really.

I stopped writing on sign up forms etc that her medical needs include premature birth because most people do not know she was early so we stopped putting it or talking about it.

Another thing, we kept up with a lot of nicu parents and MAggie started doing great right after her due date hit. She reached most of her actual milestones by 18 mos and was pretty corrected with exception to speech.
We found it extremely stressful to see other nicu graduates not doing as well and pretty much kept the preemie thing on the DL. We knew families where their preemie was not as early not as small etc and this child would have all sorts of issues. One time picking up dd1 at camp, another Mom I didnt know remarked that her son was behind and he was a preemie. I just nodded politely but it was obvious the boy had a struggle. Another mom remarks- "WOW Maggie was a preemie too!!" so the mom asked how early she was and I had to say "15 1/2 weeks". Her son was only 10 weeks so I felt like a real jerk. Thus the reason we dont talk about it anymore!

We bring her back every year on her birthday to the nicu and the nurse always remark they love when the grads come back because they get to see the finished product.
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#30 of 81 Old 09-12-2009, 07:46 PM
 
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My twins were born at 32 weeks (okay, 31 wks, 6 days according to U/S). My daughter had IUGR and absent end diastolic flow of her umbilical chord, son had no issues. Son spent 20 days in NICU, DD 30. Despite bottle feedings in NICU, the both learned to breastfeed, grew normally, in fact DS is the tallest kid in his class, DD is tall, just "scrawny" LOL!
They're six now, both absolutely fine, no issues whatsoever. I keep a sharp eye out for learning disabilities, but so far, they are both doing fantastic in school, love to read, love math (must get that from dad!)
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