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 community care nurse, Stoma nurse, Health visitor and physio 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, he has been diagnosed with CLD and has had ROP with 2 bouts of laser surgery s to correct this he has had NEC resulting in an emergency operation and now he has a stoma bag (ileostomy) 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, we also stayed in a Ronald Mcdonald house with other families in similar situations 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 and any preemie 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....

I feel there is such a pressure for my son to hit milestones as no doctor believes he can come out of this unharmed developmentally. Infact several doctors have even said they never believed i was going to take him home, once he caught meningitis its like they believed that was the end for him. I understand from a doctors perspective but they need to look through the eyes of a parent for once which is why im posting here today.


Im so sorry to go on its nice to finally let it out and lift a weight from my shoulders...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.

 

[AP]

Steph, you are very welcome here!

What's nice about this part if the forum is it's small but we all tend to stick by each other. There's a few older preemies stories here too, a few 2 and three year olds mums still around (me too)

Alex wasnt deemed micro (she was a chubby 27wkr) but she's had a few issues you describe- CLD, laser for ROP, and a grade 4 ivh. She's 2 now. I find it sad to hear your doctors keep throwing potential 'what ifs' at you. Right now you should be enjoying your little one.

I know you'll be worrying what the future holds. I spent Alexs whole first year every day winding myself up. Right now she's blowing my mind, doing so so much more than the docs ever prepared me for. I'll never forget the day they sat and told me the "what ifs". From that day I'd never have dreamt how well she would do!

The grade4 ivh worries me all the time, but never to the extent it did before. But a member on here, Lottie86, told me a line someone told her - don't be so quick to blame prematurity, when it could be just personality.

Docs cant define Logan, only time will tell, the docs are medically trained but they aren't fortune tellers.

You keep the faith Hun and you'll all do just fine

Xxx

 

[Olivias_mum]

Hi hun,I have a chubby 28 weeker and a micro 28 weeker.Olivias lungs were crap,she was oscillated for a long time,almost trached but finally extubated with nitric and steroids.She caught menincoccal septicemia when she was 5 months old and was reintubated,oscillated and needed dialysis. She is now a very happy,thriving little girl (albeit with awful CLD and some swallowing problems)

Grace did quite well to begin with but she had seriously small veins and they just ccouldnt get a line for her TPN,they tried for hours and hours for days on end and instead of transferring her across town to childrens for a broviac they pushed her feeds really fast (like jumping from 1mil an hour to 5 mil an hour) we got a 4am phone call saying she was being transferred to the childrens hospital. She had developed NEC,ended up reintubated. She has/had CLD,e coli sepsis, staph sepsis, a fungal infection,2 emergancy NEC surgerys,bilateral grade 3 bleeds, 3 broviac surgerys,a fundo, cardio-respiratory arrested 10 days after nicu discharge,intubated again on PICU, 4 arrests ( we lived at ronald macdonald house whilst she was at alder hey,its a fantastic place) she's finally home on an apnea monitor,still apneas but doing well With over 14 months on NICU/PICU between them in the last 2 years I know how horrible it is as do all the ladies on here and your more than welcome xx

 

[Agiboma]

Congrats on your brave little fighter. welcome and congrats, you will definetly find moms that understand you all to well in this section. I know the appointments can seem overwhelming @ first but you will get into a schedule and after some time in my expereince they just seemed routine and as my son got older the appointments became less. He is now 15 months actual and we have about 1 appointment a month. Where all here to help and support so post away.

 

[25weeker]

Congratulations on your little boy he sounds like a real fighter.

I had twin micro preemies at 25 + 2. Rebecca (twin2) was 640g but her lungs were not developed enough and she passed away after 1 day. Holly was 659g and she turned 21 months on Monday (17 1/2 corrected). She has CLD but didn't come home on oxygen and she had a grade IV IVH. Like you we were told the worst case scenario's which wasn't a pretty picture due to her being born before 26 weeks and having such a large bleed. While some people don't like that I actually preferred being prepared for the worst as anything better is a blessing.

To date my daughters only problem is she is little. At her last weigh in she was 17lb 9oz and she is in 6-9 month clothes but only ones with adjustable waists as they are needed for her height. She started walking at 18 months (15 corrected) and she currently can put 3-4 words together. I did spent the first year worrying a lot and I still do to an extent although nowhere near as much as I did at the beginning and I am still aware that until she starts school we may not have a true picture if her prematurity / bleed has affected her.

I also stayed in a Ronald McDonald house for the first 7 weeks and like you it was definitely helpful having people in the same situation you could talk too. Once Holly was out of hospital about a month or so I found out about a Bliss meeting in my area which I found a great help. Particularly seeing older prem babies and speaking to people who had been through similar experiences. If you haven't already done so check the bliss website to see if there is one near you.

I see from your profile you are in Somerset. Was your little boy in St Michaels in Bristol?

We are all here to support and help each other so come and chat anytime

xx

 

[XxStephxX]

Thank you everyone for your replies, its so nice to be able to talk about my experience and not have to explain every medical term to everyone

Did any of you have a baby discharged on oxygen due to CLD? Every time we try to wean him its like he collapses and we go back 3 steps its a bit like a little reminder of being on the unit but with the bonus of being home if you know what i mean!

Its nice to hear that these prem babies exceed doctors expectations i think once i get the hang of it all it wont be so daunting for me but because being home is still quite new to me im still trying to find my feet as such. But reading all of your posts has put a smile on my face all of our children are so special and so strong- A preemies will to live is absoloutly amazing!! My main problem is i need to stop panicking if Logan has not hit a milestone as i only have my previous son (full term) to compare to it s nice to hear how these prems develop.

25 weeker- Yes we were in St Michaels in Bristol for 5 months were you there to?

Thank you for being so welcoming everybody it is really appreciated!

 

[Agiboma]

We did not come home on oxygen but i know a few moms from teh NICU did take their little ones home on oxygen and they came off in a few months. In regards to teh milestones i think its something every premie mommy goes through, but what has helped me is to keep in mind that comparing my baby to a full term baby is unfair to him. I keep telling myself that term babies had the luxery of baking for 40 weeks whereas my brave little fighter only had 25 weeks. I also try to focus on all the things my son "is doing" rather than what he is "not doing" and that has helped me alot

 

[25weeker]

25 weeker- Yes we were in St Michaels in Bristol for 5 months were you there to?

Yes I was in St Michael's for 7 weeks before we got transferred. I went to Bristol for work at 21 weeks for what was supposed to be a day trip and came home 3 months later! I also stayed in the Ronald McDonald house once the girls were born. I loved that you could walk out the door of the house and be at St Michaels in 2 mins so it was easy to pop across at night if you couldn't sleep etc. As you can imagine Holly's transferring hospital of Edinburgh used to raise a few eyebrows when people were reading the board!

There are a few mum's on these boards who's babies have went home on oxygen. As he grows his lungs will too and the damaged area's become less significant. Preemies do tend to do things a little bit later so try not to panic.

I was extremely overwhelmed when I first brought Holly home. Firstly because I never allowed myself to believe she would actually come home and secondly I think when they are in hospital you are focusing on them getting better once you come home it really hits you everything you have just been through and you have lost out on all the normal things of pregnancy / giving birth. I know its a cliché but time does help.

xx

 

[Marleysgirl]

Hi Steph - I'm the Mum from MSE who told you to head over here (different username, same person). I won't repeat what I said there about Andrew's prematurity and subsequent problems as this is YOUR thread, suffice to say that I've got a thread around here somewhere that I started when he was born and that I've been updating since

Told you we are nice over here!

My pal Sherryberry's little girl Millie came home on O2, I seem to remember. She's the same age and was born similar size to Andrew (Millie, not Sherry!). We found each other on B&B when both babes were in NICU, and now we meet up for playdates.

 

[EmSmith1980]

Congratulations on your beautiful boy. The girlies here are amazing and will help out with anything. I have a lot of friends with kids, but nobody understood no matter how hard I tried to explain things to them, and to be honest, I pushed a lot of friends away.

I had my wee girl, Anya at 23+6, she was a micro preemie, and weighed 1lb 7oz (655g). Anya had a grade 4 IVH, umpteen infections and blood transfusions, laser for ROP, CLD and came home on o2 after 5months in hospital. Her o2 needs were quite low and set at 0.1, she was weaned off quite quickly and came off daytime o2 after around 6 weeks and night time o2 after about 3.5 months.

We were given worst case scenarios with EVERYTHING. And that started from the moment I was admitted to hospital at 23+3 with pprom due to a undetected urine infection. At the time hearing the worst that could happen was horrendous, completely and utterly heartbreaking, but now, 1 year on, I'm actually quite glad, as Anya has never been that bad, she was a fighter and a battler and she won every fight thrown at her. Every day she excels the expectations of the doctors, consultants and physio. They are delighted with her progress. I'm not denying it was a long hard road (and we still have a long way to go), but I am ever so proud of my perfect little miracle. xx

 

[bob2331]

Hey,

First off congratulations on the birth of baby Logan and welcome :0) the ladies on here are fab and god knows have helped me so much in the last year.

My son Harry was also born at 24 weeks weighing in a 600grams (his twin brother Connor was born 3 weeks before hand and was with us for a few hours)

Harry, compared to most 24weekers had a easy NICU journey.

He spent 102 days in hospital and suffered with bad reflux, RDS, he did deveolp ROP but it sorted itseldf out and he was discahrged on the day he left the hospital. His PDA closed up without the op or drugs. He came home on a litre of oxygen and had problems with hernia's. He was slowly reduced and after 3 months at being home, he came off the oxygen. Harry has problems with his lungs and we are awaiting for results to see if has another lung condition. He also has a small form of CP. He has CLD like most but he is here and we are so lucky and thnakful for that.

It takes time but he will be off it and ignore what ever the doctors say. I was told Harry would never walk, he has been walking for about 3 weeks now, was told he would spend at least a year on oxygen at home, he didnt. Prem babies are not like most, they are special and they will do things in their own way, i know its hard and upsetting but he will get there.

This forrum is a god send for us mummies who dont have other families around xx

 

[XxStephxX]

Thank you everyone for your replies its so nice to hear all these stories, and your all so welcoming too


We have just had the news today that due to the ROP when Logan was younger he is now going to need glasses due to his eyes not being as good as they expected. We are going back in 4 months to have him measured up but iv never heard of a baby so young having glasses? By the time we take him in to be measured up he will be 1year exactly but 8 months corrected. Have any of your prems needed glasses when they got a bit older?


Sorry for all the questions! Its really nice talking to people who understand

 

[Olivias_mum]

Hi hun, i dont have much experience of ROP but im pretty sure Sandis little girl Alex wears glasses so im sure she will be along soon xx

 

[Marleysgirl]

Yep, AtomicPink's little girl Alex wears glasses, and also I think Lottie's boy Findlay has started wearing glasses too. (Not that Lottie is around as often on here, as her little girl Iona is still on NICU)

 

[vermeil]

Hello and welcome Steph! ooooh Logan is sooo cute! Congratulations

Your post is so familiar - I know exactly what you mean, it`s soooo nice and comforting to talk with other moms who know the lingo and UNDERSTAND what it`s like. Like others here we have no family close by so this forum was a godsend.

Your son has certainly been through a lot! What a strong little guy! I know it isn`t a competition but I rarely got to talk to other parents to micropreemies; everyone else`s babies always seemed to be doing better than ours, stronger, bigger, healthier, etc etc. My son has been home a year and I STILL feel strong resentment of many parents I saw at preemie meetings... crying their hearts out because their baby had to stay in the nicu for 2-3 days due to jaundice. My son was struggling just to stay alive.

Our guy was a 27 weeker but at 1lb4oz (570g) he had the weight of 23 weeks. He was so small and weak the doctors gave him 25% survival odds and said if he did survive he would certainly be severely handicapped. He had all of the same typical complications, minus the meningitis and IVH. His lungs ruptured a few hours after the birth, which caused major hemorrage and he went into cardiac/pulmonary arrest countless times. It took days to stabilise him.

It's crazy how months in the nicu all eventually blur together. The news just sloooooowly gets a bit more positive over time until you realize OMG he is actually coming home some day!!! I basically cried and worried and prayed for months. When he came home it was the same story - countless appointments, specialists, therapies, etc. We were running around everywhere.

When he was 7 months (4 corrected) the neonatalogist noticed his right side was stiffer. She diagnosed cerebral palsy and put us on a waiting list for a specialized center. I was devastated. Just when I was FINALLY getting over the whole experience a bit, and starting to have semi-normal, happy days. My son had brain damage and would probably need a walker at best. Fast forward 7 months of worrying myself sick, we finally meet the team of specialists. They examine him and say... well we have no idea why you're here, he's perfectly normal! It had completely gone away on its own! The neurologist said it wasn't uncommon for micro-preemies to have stiffness or even light paralysis the first few months, but the brain is amazing and just corrects itself naturally over time. Dang I wish the first doctor had mentionned that grrrrrrr

He's now 14 months corrected and doing great, he jabbers all the time, is curious and lively, and of course is the cutest baby around You can see pictures in my sig below.

I really don't know why neonat doctors give such gloomy odds. I saw it time and again, parents who 'beat the odds', had miracle babies. So many 'what ifs' piled onto scared, exhausted parents, pushing them down even more. Are they afraid of getting sued? Just trying to prepare us for the worst? I don't know but I've often wondered.


If I had ONE advice to tell you... ignore the milestone crap! Your son has already surpassed much, much more than most other babies. Who cares really when he says a word or takes his first step after all that! He's home with you, surrounded by a loving mom, that's all that matters! I had a mom at a park who asked my son's age. She immediately said '14 months, and he isn't walking yet?? he's way behind!' I just shrugged and smiled, told her 'lady, this baby has surpassed milestones much, MUCH bigger than a measly few steps, saying gaga or any such nonesense'. I just casually listed all the conditions he survived (I admit I was feeling mean =p ). The look on her face was priceless. Just enjoy your time together, the rest will fall in place on its own. And ignore the doctors' doom and gloom! Pff what do they know!

Well I've blabbed on long enough, it IS nice to chat with other parents of micros. Please feel free to ask anything, the moms here really are the nicest, warmest bunch you can find. And congratulations again!! 6+ months, you are very brave

 

[kelly6407]

Congrats on ur new arrival, my little girl was a micro preemie born @28+6 but due to iugr weighed 1lb 8.5oz.
We were one of the lucky ones because even though she was so small, her gestation helped her I think. She sailed through nicu without any major probs, she progressed slow through the unit compared to other babies like coming of oxygen and getting out the incubator etc but that's all we had to deal with plus a few blood transfusions. She's had no problems which I find amazing, apart from being smaller than average weighing 9lb at 5 months(2.5corrected). I really feel for all u preemie mums that have alot to deal with, of course at the time of our nicu stay I didn't know we were gonna have a fairly smooth ride. Good luck to u and ur baby

 

[PrincessPea]

Hey Mrs

Congratulations on your wee bundle of joy! He is gorgeous.

You are certainly not alone, there are plenty of mums on here who will help you through and answer your questions, I know I couldnt have got through the last year without them!

My baby girl, Jessica, was born at 24+4 due to severe pre-e, weighing 600g (1lb 5oz). I had no idea it was coming and for the first week at least I felt like they had ripped out my heart and put it in an incubator. The Saturday after she was born we were told she had had a grade IV/V bleed and probably wouldnt make it through the night but she did and after being reviewed in the morning they told us it was barely a grade I!! After that we had a relatively 'easy' NICU journey, Jessica came home after 91 days. You are right at first you have nothing but appointments but like the NICU it does get easier and they do get less. Jessica has been back in the hospital to have 2 hernias removed, had a mucus cyst removed from her throat, was thought to be lactose intolerance which we now know is not the case, and has a pulmonary stenosis in her heart which it is still looking like will have to be operated on but they are letting her get as big as possible first. But to be honest given the odds we were given just before and just after she was born, i will take that thank you very much!
As for milestones, just exactly what the other ladies have said, you cant compare preemies with a term or even another preemie of the same gestation. Preemies just break the mould! Your wee cherub will do all these things when he is ready and the best thing you can do is forget all about 'milestones'. He will show all these docs exactly how it is done as preemies tend to do!!!!

Best thing you can do, relax and enjoy your baby boy, the time passes just as quickly with a preemie.

G xx