Another premie developement post?

(30 Posts)
Solero Tue 24-Dec-13 20:47:01

Hi Ladies, didn't want to hijack 34PinkLadyApple's post but have been having the some question running thru my head for weeks. So the background of the story is: DD was born at 34 weeks by crash section as her heart rate had dropped to below 90bpm. She was delivered within minutes but wasn't breathing and had no heartbeat and it took them 16 mins to bring her back. She was rushed to NICU and we were told she prob wouldn't make the night. However she pulled thru. She spent 24 hours on a ventilator and had significant blood pressure and blood sugar issues which took 3 days to stabilise. She had to be fed thru a tube. She did however make great progress and was moved into SCBU after 4 days. She was allowed out of hospital after 11 days and altho an MRI scan showed no damage to her brain from the time she was without oxygen we have been told the there is the chance of developmental problems.

And so to my point. I have several friends who all had babies within 8 weeks of me and I am struggling like hell not to compare DD's development to their (full term and no problems) babies. DD is 20 weeks corrected she does some of the things she is supposed to. She had good head control, 'mouths' everything, can sit with support, will reach for the toys on the arch on her play mat and can pull them off, she smiles and laughs and and is vocalising but she can not sit unaided or roll over at all and she still seems a bit jerky or flappy in her movements. I get upset when I see posts of their DCs rolling over and the like and I worry about my DD. I know she had such a terrible start and is doing so well to even be where she is and I appreciate everything little thing, knowing that we could have lost her. She is being monitored by the hospital and they are very happy with her progress but I need to know she is ok and on the right track. What experiences have others had?

PS Merry Christmas x

biryani Tue 24-Dec-13 20:59:01

Mine was born at 29 weeks, by emergency c-section. She was in hospital for 6 weeks and discharged at 5lb. She was very little, but developed fine. Apart from getting lots of colds and bronchiolitis in her first year, she's been a most energetic, healthy child. She walked quite late, at 18 months, but reached her milestones on time. In fact, she was never even considered premature if you see what I mean. I think premature babies develop an inner toughness to compensate for being born early or something (my opinion, not science)!

All babies are different, and come along in spurts. It sounds to me that your littlie is doing great. Have a word with your hv if you're concerned.

Comparing her to other babies is counterproductive!

Solero Tue 24-Dec-13 21:14:16

I know its counterproductive and that's why I feel so terrible. She really is doing great and the worry is all in my head but it is very persistent anxiety for her not to have problems because of her start in life. I guess its a guilt thing, could I have prevented anything or done something different.

In terms of HV we have just moved house and were told our new HV would be in contact but apart from a quick weigh in at our new doctors we haven't seen anyone yet.

I should stop worrying and just enjoy having her, in the knowledge that we very nearly didn't.

Ilanthe Tue 24-Dec-13 21:35:48

My DS1 was born at 33 weeks and was then in SCBU for 27 days, though his birth was fairly uneventful other than the fact he was early.

Nevertheless, he was massively behind all through his first year, way more than his adjusted age would suggest. He didn't reach out for anything till over 6 months, sit till 9 months, crawl till 12 months, walk till 20 months. No babbling or other sounds.

I was so worried. All the other babies I knew, even ones born after his due date were miles ahead of him. I cried when all his cohort moved up to the next room in nursery and he didn't. Then suddenly, as he approached 2, he caught up.

He's now just turned 4 and completely indiscernable from his peers. In fact his speech and numeracy is a little bit ahead, according to nursery.

So basically, she will catch up, I promise. After my DS had done his catching up I read somewhere a lot of preemies catch up in their second, rather than their first year. A rocky start takes some getting over and your DD had just that. Please don't worry.

And please don't feel guilty. I know its easier said than done, I feel guilty almost every day. Lots of what ifs. But she's here and she will be beautiful and you must enjoy her.

plentyofsoap Tue 24-Dec-13 23:01:07

Its so hard not to compare but it sounds like fantastic development! My ds was 33 weeks and was behind for a while. He struggled with his weight and sitting.
He is five now and you would never know. Alot of my friends had children around the same time who were all term. Ds is the only one without any on going issues like language or toliet issues.
You have had a difficult start, I wish I had not worried so much with him. Currently holding my new 33 week dd and the anxiety is not there this time.
Merry xmas smile

biryani Tue 24-Dec-13 23:02:13

Agree with above. Now go away, get an extremely large tipple and just enjoy your beautiful little dd!

I get the guilt thing, too, though. I don't think there's any research yet to determine why some babies decide to put in an early appearance. Maybe that's why we feel guilty: there's no apparent reason, so it must be our fault.

MiaowTheCat Wed 25-Dec-13 12:56:46

DD1 was behind quite a bit until about 18 months when she suddenly just figured out walking, started gaining words at a jawdropping rate (she came out with "binoculars" in the correct context randomly at one point) and became obsessed with learning to count. Now, if anything at 20 months, I'd put her well ahead of her chronological peers - as I mentioned on another thread - the HVs point her out to other women with prem babies in baby clinic worrying about the future for their kids.

This time last year she was 9 months old and not even rolling over, let alone sitting unaided - I remember vividly she was at my mum's last Christmas and frustratingly near figuring out rolling over but not there yet.

Madlizzy Wed 25-Dec-13 13:05:12

Relax and think of her at her corrected age rather than actual with regard to development. By the time she's 18 months, you won't know that she was early. My triplets took their time, but at age 14 are definitely at the same level as their peers.

Madlizzy Wed 25-Dec-13 13:05:56

Oh, and she's not behind at all, she's where she needs to be for her age. Those 6 weeks do make a big difference at this age.

DS was born at 31+5 with no ongoing health problems bar being small (4lb11.5oz), but gained weight well and by 1 year was quite happily in the right range for his peers.

He did do everything late - he couldn't sit until 9m, crawl until 13m, walk until 17m. I used to get quite upset that even babies younger than his actual age (i.e. born considerably after his due date) were way ahead of him - hell, even his friend from SCBU, born 9 days earlier at a gestation of only 24+5 did everything before DS did! But he is now 20m and you honestly couldn't tell he was premature. As he has got older I've realised there is a huge range of "normal" for everything babies/toddlers do, and after only a few years you would never know (or care - at least, one shouldn't!) who did what when!

Have a lovely Christmas with your wonderful DD and take comfort that she is doing well - these prem babies are amazing little things smile

bonzo77 Wed 25-Dec-13 13:12:38

Ds2 was born at 35+5 due to placental insufficiency. He also had help with breathing, and was on IV glucose initially, then via ngt, progressing to milk then oral feeds. 8 days in NiCU and SCBU. He only sat at 9 months, though did manage rolling quite early (about 5 months). At 12.5 months he still is not crawling, cannot get himself to a sitting position, cannot really feed himself and has no words. He is months behind DS1 at this age IFYKWIM. He was discharged from paeds at 6 months, and there are no 12 month checks or HV visits round here. I'm fairly certain he's within normal limits, as I know I didn't crawl til 23 months. I'm giving him till then, I just think they're the slow end of normal, then when you factor in their prematurity, that's where they're at.

Guaparesaca Wed 25-Dec-13 13:27:18

I want to share with you my story which I think is pretty amazing and prematurity and development is something I think about regularly as I myself was a prem baby. I was born at 26 weeks in the early 1970's weighing just over 2lbs. My mum didn't want to see me for a week when I was first born, so scared was she that I would not survive. I was in an incubator for 3 months, had countless invasive procedures and blood transfusions. I'm sure right at the start I had to be airlifted to a bigger hospital as there was not even an incubator in the hospital in which I was born.

Fast forward to now....

Having gone through mainstream education, both primary and secondary, I have achieved two degrees, worked for years in a professional job, have lived independently, got married, given birth to two healthy happy children. Without wanting to sound arrogant, I consider myself a miracle!

What I want to illustrate is that 40 years ago the odds were stacked very much against me, the care of premature babies was fairly rudimentary, my parents had no idea of my prospects, beyond the early weeks, not let alone whether I'd develop unhindered by additional needs. The way I have grown up really belies those very shaky early days.

I wish all of you and your babies and children the very best.

Merry Christmas.

Guaparesaca Wed 25-Dec-13 13:38:40

Solero I feel for you and your clear awareness of your anxiety about what has happened to your DD, that you are somehow responsible. I can only speak from personal experience but throughout my life and up until fairly recently I have felt overwhelmed by my DM's overprotective ness towards me. I honestly think my DM has always acted out of love and a massive urge to protect me, given how I came into the world and our experiences in the early days. It's only now as a parent of two DCs and a fair amount of counselling that I have realised she has been absolutely compelled to treat me like this and my beef with it has been that I am not considered to be capable of managing things for myself.

I have no doubt that she knows she is loved and cherished, however when the time is right, allow her to spread her wings, make discoveries for herself, make mistakes but learn to grow up in her own way.

I hope I have not overstepped the mark but I wanted to explain from a premmie's perspective how life can be later on in life.

plentyofsoap Wed 25-Dec-13 14:02:21

Thank you for that its good to hear feedback from another perspective. I know a lady and her ds came early over twenty years ago. She has done alot of damage by being over protective towards him. When you are faced with the possibility of losing your baby its hard not to be and I'm sure your dm did it out of love. Glad to hear you have done well.

MiaowTheCat Thu 26-Dec-13 08:13:16

One thing you'll also find is lots and lots of utterly normal adults (especially little old ladies) who when they find out your baby was premature - will turn around and tell you that they were born at some utterly jaw dropping gestation and honestly, unless they'd told you, you would never tell!

The one that sticks in my mind was this little dear old lady (both DDs attract them with shameless eyelash fluttering and grins) on the bus telling me how she'd been born at 28 weeks or something and considering the technological changes since then and now - that one amazed me slightly!

NoForkNKnife Thu 26-Dec-13 09:22:40

Agree with Miaow. My aunt will be 90 in a couple of months and was born '3 months early' (thats all she knows).

My dd is a 29 weeker and now 9 months. She is roughly in line with the other babies that I know born in the same month of her corrected age, maybe slightly behind. She can roll well from her tummy to her back but has only just mastered the other way (and gets in a right stop of you try and encourage her). She can sit unaided for just a few seconds but has been like this for at least 6 weeks with no improvement. She sees a physio very regularly as she was referred for hypotonia (apparently much better now). The physio says her core muscles are very week which kind of fits as she was delivered early due to placenta failing with severe IUGR.
She is saying mamma and dadda which I'm very proud about, but physically she is very lazy (probably wrong word) and gets angry if we try and encourage her to do things she doesn't want to do.

Her biggest issue is her size. She is only jist 11lbs (and actually close to 10mths!) and is gaining weight painfully slow. All the test they have done have showed nothing, but she is a nightmare to feed. But thats another thread. This is my main concern and I'm sure is what is keeping her back physically.

It's encouraging to read so many positive stories. Especially the catching up in 2nd year! She has a lot of catching up to do!

plentyofsoap Thu 26-Dec-13 12:46:18

Nofork ds was a nightmare to feed so I feel your pain. He actually improved when he went to nursery just before he was two. He is fine now but be aware that they catch up between 2-5 years but they get there eventually.

minipie Fri 27-Dec-13 14:03:15

DD was born at 34+0 and is now 14 months/12.5 months corrected. She also was not breathing at birth (for about 4 minutes I believe), we never had an MRI.

Like you I spent ages worrying about her development. Every time I saw a baby of her corrected age I would compare, and if the other baby seemed ahead I would worry.

Over time I have relaxed about it. I think there are several things that have helped me relax. First, I took DD to a private children's physiotherapist, who specialises in assessing for CP and other physiological issues. After a couple of sessions DD was described as "completely average" which I was delighted to hear smile Is this something you could do?

Second, I came to realise there is such a wide spectrum in terms of when babies - full term babies - achieve certain milestones. So for every full term baby that is sitting by 20 weeks (very rare!), there is another who won't sit till 9 or 10 months.

Third, as DD has got older and has hit various milestones, I have realised that she will get there in the end, even if she doesn't do it at the "average" time. And getting there in the end is all that really matters.

DD is now cruising, taking her first wobbly steps, chattering away, has a couple of sort-of words. I wish I could have known this would be the case when she was only a few months and I was so worried. I can't tell you for sure that your DD will be totally fine but I can tell you that it's very very likely she will be, so if you can manage to stop worrying, do!

Best of luck x

MiaowTheCat Thu 02-Jan-14 08:59:55

Second, I came to realise there is such a wide spectrum in terms of when babies - full term babies - achieve certain milestones. So for every full term baby that is sitting by 20 weeks (very rare!), there is another who won't sit till 9 or 10 months.

Definitely this. DD2 (technically prem but she was a whopping 7lb 36 weeker so I don't really tend to think of her as such) has only just begun to sit with any degree of consistency in the last week - and she's nearly 10 months! I haven't been worried about it - she's been working on rolling, crawling, starting to try to pull to stand - and her reflux has meant she's gone bonkers on the leg straightening front so sitting was always going to be a bit later. I think you just drive yourself nuts if you sit and count milestones even with full-term babies... which I know gets me a few raised eyebrows at baby groups but I think in that regard having DD1 as a preemie didn't half help move me out of the competitive milestoning aspect of things that you can fall into far too easily.

Incidentally - DD1 - sat at "normal" for adjusted age... late as hell rolling, crawling, pretty average pulling to stand, bloody late as hell walking.

DD2 - rolled early, crawled early, sat bloody late! Driving me insane wanting to stand up at the moment.

minipie Thu 02-Jan-14 13:28:41

Totally agree Miaow that having a preemie has the silver lining of avoiding competitive milestoning!

I confess I could easily have been sucked into wanting DD to be "early" at everything (like I was and like her DH was), had she not been prem and with various other worries very early on. As it is, I'm just delighted that she gets to each milestone at all.

MiaowTheCat Sat 04-Jan-14 20:51:14

DD1 is also now incredibly frighteningly bright (and I'm speaking with my Early Years hat on there, not my hideously biased mum one) - can count with some degree of consistency, 1-to-1 correspondence etc, massive vocabulary and problem solving skills that are giving me a splendid quantity of grey hairs (things like using a candy cane off the tree to unhook a just out of reach enticing bauble)! Physically she could easily pass for a child going into a reception class size wise... people look at me like I'm nuts when I say how small she originally was!

lotsofcheese Sat 04-Jan-14 21:23:32

I've had 2 prems: DS is an ex-29 weeker, with severe IUGR, reflux, came home on oxygen, was resuscitated at birth & on NICU. Was 95 days in NICU.

I was paranoid about his development, always googling & looking for signs of CP, developmental delay.

He sat at 9 months corrected, crawled at 10 months & walked at 14 months. Pretty normal.

But in other ways he has not caught up eg size (but getting there) & we have kept him back a year at school.

DD was a 36 weeker (almost) & in good health (apart from low glucose & jaundice, with feeding issues) only 8 days in SCBU. She has just started rolling over within the last month (7 months corrected) but is not sitting/crawling. I'm not stressing.....

What I'm trying to say is: please don't worry, or spend too much time obsessing, just try to enjoy your baby.

minipie Thu 09-Jan-14 12:09:16

cheese that's interesting about keeping your DS back a year. Do you mean he will start reception at 5 rather than 4? Was it difficult to get that agreed?

lotsofcheese Sun 12-Jan-14 17:14:46

Sorry Minipie for the late reply.

I'm in Scotland where we have a very different system. The oldest children in school here have March birthdays & the youngest February - school starts in August. So the eldest will be 5.5 & youngest 4.5.

Children with January/February birthdays have the automatic right to defer, or equally to go to school.

Children with August-December birthdays can apply for a discretionary referral, which is difficult to get. However I had the support of DS's GP, all the professionals involved in his care, his nursery & school, so I was able to present a strong case.

minipie Mon 13-Jan-14 10:31:30

Ah ok thanks. We don't have this issue with DD (she was due in Dec and born in Oct so still the "right" school year on the English Sep-Sep school year basis) but just thinking ahead to DC2 if they should be prem as well, wondering if I need to try to avoid Sep/Oct due dates in case being prem pushes them into the wrong year... (I'm a bit of an overplanner grin). I'll have a look into the English rules.

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