Any micro preemie mums out there?

XxStephxX

Hi all i had my second child prematurely he was born at 24 weeks we ve been home around 9 weeks now and im just literally starting to get overwhelmed by all the doctors appointment and nurses to my house ( i cant even cut it down due to him being oxygen dependant)

He has had such a troubled stay in the NICU we were there for 6 1/2 months. We went through several infections, brain haemorrhage L2, meningitis, sepsis you name it we went through it. During our stay it was a bit easier as we had other parents surrounding us who were going through similar problems now we are home i feel so isolated because no mum who has not been through it will truly understand how it felt/feels.

The hardest bit with the micro preemies is the constant reminders from consultants about disabilities-which is not an issue but not something anyone would want to think about until confirmed. I was hoping someone on here would have some experience of their prem babies and their outcomes and most importantly someone who understands....

Im so sorry to go on its nice to finally let it out...all i ever get from my HV and the doctors is 'i understand' when they dont! I want someone that truly does just for a chat.:)

Plans_all_plans

Hi sorry to hear about the stress you're under. I was just wondering if your consultants/health visitor/local doctors surgery would have any info on support groups relating to premature babies?

I've just done a search and have you tried Bliss?

XxStephxX

Plans_all_plans wrote: »

Hi sorry to hear about the stress you're under. I was just wondering if your consultants/health visitor/local doctors surgery would have any info on support groups relating to premature babies?

I've just done a search and have you tried Bliss?

Hi yes i regularly use bliss with the leaflets etc to be honest they are a godsend! I will ask the consultants at the next appointment-iv not heard of any groups but hopefully my consultant may know of one nearby!

Plans_all_plans

It would be a shame if there isn't one local to you. These days there are support groups for everything and for something as important as this, it would be really useful. You could also ask Bliss if they know of any/or online forums you could use. Best of luck with it all. Hopefully someone on here will be able to help you, as sometimes all that you need is a good chat with someone who's been there. Hope you find some support soon.

Felicity

Sorry I have no experience but congratulations on finally making it home and I wish you all the best for the future. I nearly gave birth at 27 weeks and so did a lot of research at the time, I can't imagine what you have been through x

osian

Sorry to hear of everything you and your son have been through. Do you go on https://www.mumsnet.com, or perhaps netmums? Was just wondering if you'd have a bigger 'audience' of new mums there, some of which may have gone through the same thing? Wishing you and your little boy all the best.

Tigsteroonie

What would you like to know?

Our boy Andrew was born at 29 weeks (okay, so not stupidly early but still pretty early) and weighed just 1lb 6oz, so I think he qualifies as "micro preemie" He spent 11 weeks in NICU and was discharged just two days after his original due date. He had a cranial bleed before birth, and developed (and fortunately overcame) infantile spasms when 9 months old. He's now two years old but the size of a one year old, has developmental delay, feeding issues, and hearing problems. He's gorgeous

The only medics I found who understood the stress were the Neonatal Nurses who did our home visits for the first two months; my HV was very good but just didn't seem to understand how overwhelming it can be when you are trying to balance the current health situation (including, in your case, managing O2) with the uncertainty of any future health issues. I was REALLY lucky to have fantastic emotional and practical support from my partner.

No offence to MSE but this may not be the best environment for emotional & practical advice on such a narrow subject - can I perhaps point you towards the Premature Babies area on the Baby & Bump forum? We are a really friendly bunch :whistle: many of whom have had micro-preemies and understand exactly what you are going through.

Micro Preemies Rule :T :T :T

mrs_marty

Hi I dont personally however my friend does, she writes a blog called not even a bag of sugar, I will see if I can post you the www so you can read it she has a huge following, Im sure she will be able to help.

You must be exhausted with it all, hope you all keep well x

Cant get it to work but if you are on facebook and type it in it hopefully should come straight up x

XxStephxX

Tigsteroonie wrote: »

What would you like to know?

Our boy Andrew was born at 29 weeks (okay, so not stupidly early but still pretty early) and weighed just 1lb 6oz, so I think he qualifies as "micro preemie" He spent 11 weeks in NICU and was discharged just two days after his original due date. He had a cranial bleed before birth, and developed (and fortunately overcame) infantile spasms when 9 months old. He's now two years old but the size of a one year old, has developmental delay, feeding issues, and hearing problems. He's gorgeous

The only medics I found who understood the stress were the Neonatal Nurses who did our home visits for the first two months; my HV was very good but just didn't seem to understand how overwhelming it can be when you are trying to balance the current health situation (including, in your case, managing O2) with the uncertainty of any future health issues. I was REALLY lucky to have fantastic emotional and practical support from my partner.

No offence to MSE but this may not be the best environment for emotional & practical advice on such a narrow subject - can I perhaps point you towards the Premature Babies area on the Baby & Bump forum? We are a really friendly bunch :whistle: many of whom have had micro-preemies and understand exactly what you are going through.

Micro Preemies Rule :T :T :T

Thank you!! I will pop over to baby & bump now and see what response i can get on there. I was a bit lost as to where to post this but i knew some one like you could point me in the right direction!

Ill repost this on there and maybe get to hear more responses like yours! Thank you so much, and im so glad to hear your little man is doing well when i hear how babies have come through similar problems as my son it really gives me some hope as all you hear about preemies seems to be scare stories these days!:beer::)

Tigsteroonie

Excuse the horrendous layout and slow speed on Baby & Bump - it looks like they've had a major redesign today, and it's going donkey slow.

webitha

hey i had one too
thing 1 was born at 32 weeks, stopped growing at 27 week and weighed in at 2lb 13oz, he has had about 8 ops and maybe needs more in the future,

i was told that due to his complications they doubted that he would reach his 10th birthday and that he will always be behind his peers...

well today he is a normal gormless 12yr old boy, hitting puberty with a vengence :rotfl:
he is in mainstream education and doing very well, group 3 out of 6 for main subjects so average
yes sometimes he is slightly behind emotionally and he has ADHD with autistic tendencies, but he has confounded his peadatrician who is very very pleased with him, who now says that there is no reason that he cannot live a full and happy life.

there was no support when he was a baby, they just showed me once how to work his apnea monitor and cpap and his injections and basically left me to it...there is so much more info out there espesh on tinternet, (which i didnt have nor could afford)

if you want a chat me and tigs have a wealth of info between us :D