Mamas of Babies born at or before 28 weeks

I am interested in hearing from mothers of babies born at or before 28 weeks. Whilst I know all prems have issues - those born before 28 weeks have significantly more challenges (usually) than their later sisters & brothers.

My Imogen was born at 27+5 weeks and weighed a tiny 815grams. She was very slow to progress and came home at 2 weeks past her due date.

Anyway Immy has remained slow to progress. She put on weight poorly, she reached milestones very slowly. She now has limited speech - only about 6 words. She doesn't use them in context... She walks with a robotic gait and falls often. she uses her tip toes a lot. She finds it hard to follow instructions. She however is an absolute little card. She laughs and keeps us in stitches most of the time. She sleeps poorly.

She is being investigated for CP - I don't know that she has CP but the speech delay and mobility issues are hard to dispute.

She looks more like a 10 month old that has just started walking.

So, anyone else with a bubby around this gestation - what were your experiences.

Thankyou in advance. :hug:

How old is she now??

Whilst I dont have a 28 weeker (nearly was though) Brendan has a lot of issues related to being born so early (30+1) I can hopefully offer you some hope/support :)

Hi Innana,

I haven't had a prem bub myself but a good friend of mine had twin boys born at only 25+4 wks. Sadly twin 2 passed away (renal failure) after battling for 6 long weeks. My friends surviving twin will be 2 in february and he has progressed in leaps and bounds and he is walking but still not really talking very much at all, and he still likes his solids mashed like a younger bubba etc. He is still quite small for age and probably looks like a 12 month old at the moment. He has been through Sooo much - several eye operations and hernia op's and he still has to have oxygen while sleeping.
He is the most precious little man and gives his mum so much joy. And I think in time he'll catch up.
I'm sure your little princess will catch up too. Best of luck with the CP tests etc.

My little one is only 11 weeks (39weeks corrected), so dont have any advice, but Im happy to see others here to share experiences with :). Connor was born at 28 weeks.

Our Charlie was born at 28 weeks and has moved ahead in leaps and bounds. Once he got home, he never looked back, other than a very loooong winter with him catching every single chesty virus going around and him being in a hospital a couple of times.
We have been extremely lucky with him, other kids in our 'premmie mum's group' are still having issues regarding weight gain, possible cerebral palsy etc but we are all soo very grateful that our kids came home.
Being so small at birth, she will take a lot longer to catch up, but what a miracle little girl to come home and be walking around at all! How old is she now?

Also, how exciting MrsMc to have an exit date!!! We spent 11 weeks in hospital and the day we FINALLY strapped him into the car seat to bring him home, we spent nearly half an hour in the car park just gazing at him and taking pictures :lol:

Thankyou for your replies. I am sorry it's taken me time to respond. Some have been confronting to me given recent events...

Last week at Immy's Paed appointment he broached that he is suspicious that Imogen may have Williams Syndrome. Williams Syndrome is a random genetic mutation deletion of a small piece of chromosome 7.

I have believed from birth that Immy had a chromosomal issue. This was brushed aside really in the fight it was to keep her alive. I guess that became not important. Immy had a skin tag on her left ear. (for those medical people skin tags often come along with chromosomal issues) Given my experience in this area when I saw it I just knew...

However, maybe he is wrong. I pray so! Williams kids usually have mild to moderate mental challenges (I detest the word retardation). They are low birthweight (Immy was 815g - with an expected weight at that gestation to be at least 1200g) - though due to my health issues and a very poor placenta the weight was more likely due to that.

Immy was slow to gain weight. Despite feeding frequently and being fully breastfed. She just didn't gain. To the point where I stopped weighs as it was too stressful for me and thus her. She has had frequent ear infections, they have a ****tail party personality - which is difficult to miss with Immy. She loves everyone and laughs and smiles at all. She will go to complete strangers with out a thought. This James tells me is true of all Williams kids. She is short stature with a typical elfin face. She has the epicanthic fold that is a feature of many "syndromes"...
The high calcium levels she had at birth we put down to the stain on her cardiovascular system due to her prematurity and thus breathing issues. However these are also a hallmark of Williams...

Anyway James has thought this for a while and was cautious about broaching it... However, there was a sense of relief as well. That finally there was a reason...

However, having said all of that I can say that I don't believe it is possible to love another human as I do her. I am in awe of her strength, courage and happiness. She is still my little Immy - she has come with challenges - however whatever they are I will walk them with her. So will her sisters and brother.

Tomorrow she has the bloods taken for the FISH and karotyping. A test I have taken and done on so many people. Tomorrow it's on my baby girl...

This time next week we will know. Say some prayers for her. :hug:

hey there
i dont know if my advice is relevant as my twins were born at 30 weeks- but twin 1 had stopped growing and developing at 28 weeks due to placenta failure and low chord flow
my twins are now nealy 7 years old and man its been a tough journey. Twin 1 was 1402grams and twin 2 was 1800grams- quite good sizes for their gestation, but born with a 10% and 20 % chance of survival at the time!

I reckon it took twin 1 until he was 2 years old to catch up size wise to his peers. Now he is a giant and heaps taller than his peers! Twin 2 has always been ms average size wise and continues that way

health wise has been a toughie. Twin 1 has CLD and asthma- his normal o2 stats sits around 94% on a good day- it doesnt bother him- just annoying - it worries me of course some times. He has also had to have 5 operations to finish off and fix things that mother nature didnt as he was born too early for them to happen. Also lots of pnumonia until he was around 3 years old and then the pnumoinococcial vaccine made a huge difference! Only around once a year now!
Physically its has taken alot of hard work to ensure that muscle tone was there- i really credit gymastics to helping with this area! Twin 2 acheived milesstones ahead of time where as twin 1 lagged a bit- but got there in the nic of time lol

at school twin 1 has struggled- no short term memory- a real bugger when you are trying to read etc. heaps of intervention and school support has made a huge difference!! He is still 12 months behind his peers at the moment, but getting there. Twin 2 is 12 months in front of her peers - go figure

they both now wear glasses
so all in all- time has made living with prem reprecussions, more doable, but there are still things that will always be reminders of their early birth

one thing i believe has impacted on them the most- is their determination and dogmatic traits that they had to exhib to survive are now hard work to deal with as children !!
but hey- we wouldnt have it any other way!!!!

:hug::hug::hug:
Deb, I don't have a premmie bub, but I just wanted to give you a big hug. You have been through soo much. I don't have any wise words either. BIG BIG hugs. I will pray for you and your little girl.

Thankyou Lilias :hug:

Thankyou Det... Wow they were good sizes. Immy now is not 10kgs and she isn't on the growth chart. She hasn't caught up at all. She has very little vocab, she walks only just with a funny little gait... She is th light of my life. She too has CLD - but no cardiac issues at present. She was a slow slow starter even in hospy. We were in hospital for 14.5 weeks...

She too has had constant chest infections...

It sure is a different road hey..

:hug: :comfort: Deb will be thinking of you and Miss Immy tomorrow and in the weeks to come, I cannot imagine how you must be feeling, sending you the warmest of hugs and will be keeping you both in my thoughts and prayers. I PM'd you the other day about this thread. :hug: :comfort:

All the best, I hope you get some answers soon. As hard as it is to accept the answers at least the journey looking for them will end :hug:

Hello.

My daughter was born at 28weeks and weighed 100 grams more than your little one.
She didnt need ventilation and was on cpap for 4 days.
Very uneventful 9 weeks at KEMH. She just needed to learn to feed (desat was frequent and thankfully zero bradys) and get fat.

She crawled at 11 months, walked at 21 months and is bout to start kindy in February 2010.

She has a stutter and that's about it.
We are very lucky that she has no issues from being so early.

Apart from being petite .. she is fit and healthy.

I cant offer you any more advice sorry but I wish you all the best.

How's things Deb, have you gotten any news?

Hope things are well Deb :hugs:

Kerri, welcome to BB :) Brendan and Tristan are both KEMH graduates :)

Deb just thinking of you and wondered if you got any answers?