Premature Babies

Ronan H

Hello...

I was just wondering if there are any people here who have had premature babies?

Our son was born on October 4th last year, over 3 months premature and spent almost 3 months in the NICU in the Rotunda before coming home on December 28th. Thankfully though, we have got through it all in one piece and things are settling down now so i thought i would initiate a thread on the topic to see if there is anyone out there who would like to share their experience, ask some questions etc...

Between myself and my wife at this stage we have a wealth of knowledge on the subject as im sure other parents have, so this thread might help serve as a resource that might be helpful for others both now and down the line...

I would be particularly interested in hearing from some of the Dads, they tend to be a bit quiet when it comes to this topic on websites .

Ronan H

littlebug

Hi Ronan,

My first was born 6 weeks early (nearly 5 years ago) and spent just 3 weeks in pbu before coming home. She had no problems at all, didn't even need oxygen but just needed to grow a bit and work on her feeding before she came home. So my experiences are minor compared to yours. I can't even begin to imagine what you went through (although I spent most of my second pregnancy worrying about it ).
However I do know what it's like to only be able to hold your little one for a couple of minutes before she's whisked off to pbu, what it's like to go home from hospital without her (lots of tears there), the feeding tube and the frustration of trying to get her to feed with the nurses looming over me with the dreaded syringe.

What weight was your little one? Any problems since? My little girl had terrible reflux for her first year, also recurring chest infections and asthma. She was sick an awful lot til she was over two (in comparison to her brother who was full term), but never sick enough for hospitalisation thankfully. She just seemed to pick up every bug going and more. She's great now though.. On the smaller and skinnier side of the growth curve but rarely sick at all.

One thing I think that all preemie parents worry about is "will it happen again?". Well my second one got to 38 weeks. I also have a friend who's first was born at 29 weeks at 2lbs 12oz but her second and third had to be induced 2 weeks overdue and were over 9lbs!

I'm sure you'll a great help and reassurance to any new preemie parents who come across this and I'm pretty sure there are some others who post on this forum (dads too!).

Hellrazer

Our first daughter was born at 28 weeks @ 2 pounds back in 1998 due to PROM.
Back then the docs gave her a 25% chance of survival.
She spent 3 months in the NICU and today shes perfect.Speaking from a dads point of view it has to be one of the hardest things Ive ever went through.Seeing them in that incubator with tubes and machines connected to her tiny limbs that were the width of my little finger was so scary.
Then the alarms go off and you jump at the sound of them.The nurses showing you how to tell that theyre not breathing,showing you how to "shake/jolt" them in such a way to get them going again,showing you how to reset the machines when the alarm does go off.
We couldnt hold her for nearly 3 weeks which was the hardest part.

While we were there 2 babies born later then her died due to complications and that was hard since most of the parents there had a "bond" and became friends through the whole thing.

Then there was the whole thing of the "if theyre getting better they get colser to the door".To explain--In the coombe you started in the really intensive care room and as the babies got better they were moved down the corridor closer to the door-when you arrived to see them and they had moved to the next room was just great but if they were moved back it was a huge disappointment.

The relief when she did come home was amazing.

Richie.

Ronan H

@ littlebug: Thanks for your reply! I clearly remember all those feeding tube days alright, its certainly a not way that you ever thought you would be feeding your baby is it? It feels somewhat detached holding a 5ml syringe full of milk up the air while it flows down the tube directly into your baby's stomach. You are technically feeding your baby but yet you aren't touching them of holding them in the normal way you would when you feed your baby. In some cases they are even asleep and don't even wake up when you do it .

We didn't even get to hold Harry when he was born, my wife barely even saw him before he was whisked off to the ICU. I got to touch his chin for a millisecond and then he was gone, that was terribly hard, although i was in total shock at the time. I was so scared even to touch him.


Harry was under 2lbs when he was born (26 weeks + 4 days). He was very sick when he was in the ICU and about 4 weeks after he came home he had to go back into hospital again for a week. That was a total killer, knocked us for 6 after thinking he was over the worst.

Since then (the beginning of February) he has been fine and hasn't been sick at all. He is attending the physio every few weeks to help him develop physically, not for any reason other than the fact that he was so sick and born so early and might need a helping hand in that area.

Harry has reflux but it has improved a lot over the past couple of months. He sleeps on his stomach all the time because he regurges when he lies on his back, even a couple of hours after his feed. He is on medication for it too but its not a big deal at the minute...

@ Hellrazer: Thanks for your reply too Dad! Good to see the lads on board with this...

I definitely agree with you when you say it was one of the hardest things you have been through, there is no doubt about that at all, a huge trauma to have to experienced and sometimes i cant believe that now i am one of those parents who has had a premature baby, one of those parents i never thought i would be...

Its amazing how you get used to the alarms and what to do when they go off. The first time it happens you think that your whole world is falling down and then after a couple of months you are ignoring most of them because they are false alarms or the sensor has come loose etc... You become a nurse in your own right almost, reassuring new parents when they come into the room for the first time...

Luckily we got to hold Harry a couple of days after he was born. We couldn't believe it, we really didnt expect it but they said he was doing so well that we could. His lungs were pretty good from the start actually, he was only on the ventilator for a few hours and then onto CPAP. He did develop signs of Chronic Lung Disease at one point but he recovered from that really well. He never had any bleeds on his brain either which was absolutely brilliant. Between that and his lungs being good that was two of the major stumbling blocks out of the way...

The Rotunda has a similar setup to the Coombe with less intensive rooms as your baby improves, but yeah the setbacks are terrible. Its one step forward, two steps back and it breaks your heart when that happens, you think you are on your way out the door and then your as far away as ever. Harry was due to come home on December 23rd last and early that morning he got really sick again and was on for another week! We were gutted, we nearly had him home for Xmas!

I set up a website for Harry with photographs from the day he was born up to the current day. At the time it was a great way for our family and friends to watch him grow as none of them could visit when he was in ICU. Feel free to have a look, its http://www.harryhalpenny.com .

Thanks again for the replies, looking forward to hearing more from people...

Ro

metrovelvet

Did you guys have any signs that they would be premature?

Ronan H

@ metrovelvet: In our case my wife went into hospital with a bleed and they diagnosed that the neck of her womb had opened slightly and the bag / sac that Harry was in was protruding from it a little bit. From that point on they put her on indefinite bed rest with her legs elevated, which could have been until term had Harry not been born 3 days later. During that 3 days her cervix opened a bit more and she had a heavy bleed on the third day and after an examination the doctor said he could feel Harrys foot, so that was that, off to the delivery room for an emergency section and 45 minutes later Harry was born. Without doubt the scariest hour of my whole life, similarly for my wife Lisa im sure...

Anyway thats our story. There arent really any telltale signs apart from this very obvious situation above. There are a number of things that contribute towards premature birth but no definitive answer as to what causes it if you get what i mean? I believe my wifes situation was a case of incompetent cervix, which is a horrible term, but it refers to the premature opening of the cervix. On our next pregnancy my wife will get a stitch in the neck of her womb to hopefully bring the pregnancy to term and strengthen the womb so it can hold the weight of the bag / sac.

I hope that is helpful.

Ronan

Ickle Magoo

My son was born by emergency section at 34wks because I developed pre-eclampsia. I was in hospital at the time but was given only 15mins notice that I was to be sectioned immediately. It was a hugely frightening experience even tho he was a good 4lbs & needed no help with his breathing, my heart goes out to parents with earlier, smaller babies. It was gut wrenching seeing my wee man in an incubator but at least it was only for a few weeks. Good thread!

RainyDay

Our little girl was born 6 weeks early and spent 3.5 weeks in NICU in Holles St, Unit 8. We had a number of scares during the pregnancy, and to be honest, getting all the way to 34 weeks was something of a relief. She is still a bit smaller than her peers (3.5 years old now), and she was a little slower to walk & talk than other kids around, but she was and is amazingly healthy. She has never had any perscription drugs, and has never been to a doctor, except for vaccinations and checkups.

littlebug

Gosh there's a lot of 34 weekers here. In fact I myself was born 6 weeks early! It's a difficult one because on one hand you're relieved that they're not so premature that they're sick or that there's anything really serious to worry about yet you still have to go through the whole incubator/ tube feeding thing and go home without your baby. One friend kept saying "ah sure she was just ready to be born"..eh no! I even had people say "wasn't it great to go so early" and "sure it's great the nurses will get her into a routine for you"..eh no and no again!"

Metrovelvet I had no warning signs at all. In fact I had a great pregnancy (physically) up until I had pPROM at 34 weeks. In restrospect the only difference between my 2 pregnancies was the stress levels. Right from the start of my first pregnancy there was an awful lot going on in life in general. There were 3 deaths in the family, a cancer diagnosis, a cancer scare, threat of redundancy, difficulties in buying a house and lots of other stuff! In comparison in my second pregnancy the only stressor was the pregnancy itself and the worry that I might have another preemie. I also found out that when my mother was pregnant with me she may have taken a drug to prevent miscarriage which can cause subsequent obstetric/ gynaecological problems in the unborn daughter later in life (see www.desaction.ie) so I was a bit panicked about that.
( Unrelated to this thread but it's something all women born anytime earlier up to the early 70s should know about). Anyway all turned out ok... second pregnancy was fine and both my kiddies are perfectly healthy and well

Ronan H

The day Lisa was discharged from hospital was a horrific day too, walking out of the hospital (actually shuffling as she was in a lot of pain after the operation) in tears and having to drive home without your baby in the back seat...thats just wrong. Something i hope i never have to do ever again .

Isnt it amazing the stupid stuff people say to you when stuff like this is going on? We havent had all of the examples you mentioned but we had a nurse at one stage telling us on a friday evening after a full day at the hospital that "if i was you guys i would be going out for a few drinks and enjoying myself tonight...". As you said littlebug: EH NOOOOOOOOOOO! Somehow i dont think she has had a premature baby in hopital for 3 months... Stuff like that really pissed me off!

Head

metrovelvet

littlebug wrote:

Gosh there's a lot of 34 weekers here. In fact I myself was born 6 weeks early! It's a difficult one because on one hand you're relieved that they're not so premature that they're sick or that there's anything really serious to worry about yet you still have to go through the whole incubator/ tube feeding thing and go home without your baby. One friend kept saying "ah sure she was just ready to be born"..eh no! I even had people say "wasn't it great to go so early" and "sure it's great the nurses will get her into a routine for you"..eh no and no again!"

)

I cant fathom what people are thinking! How can they say something like that?

I did read that some studies have shown that stress can produce hormones that cause uterine contractions.

How did you feel your post natal care was in terms of helping you nourish and take care of a pre-mee?

Head - they let your wife WALK out? They didnt give her a wheelchair?

Hellrazer

I actually dont think that people realise how serious prematurity is.
Even my parents took the usual line of "ah sure when we had premmies we kept them in a sock drawer--never did them any harm" I mean ffs--my daughter has a 25 % chance of living and you get this.

My wife also got PROM at 23 weeks and they expected our baby to be born a few days later but she did manage to hold on to that vital 28 weeks which seems to be when they consider a baby "viable" although there was a 22 weeker there(800 grams or something like that if I recall) when we were there who did extremely well aswell.I always remember seeing the 22 weeker with its mothers wedding ring around her wrist.Scary stuff.

Another thing I didnt realise is that different hospitals will not resucitate at different stages.For example there is one hospital in Dublin who will not resusicate until after 28 weeks even if there is a chance of survival--this may be changed now but 9 years ago this was their policy.All the others will do everything they can to save the baby.

Ickle Magoo

metrovelvet wrote:

How did you feel your post natal care was in terms of helping you nourish and take care of a pre-mee?

Our hospital was fab - provided an electric pump so I could feed the wee fella (actually, I was feeding several of the wee ones as I had so much milk, lol) & they kept us in the loop with daily meetings & were lovely, I still get stopped in the street by the nurses who looked after our son asking after him - but it's still absolutely terrifying.

I remember walking in to the SCBU one day & my son's incubator was empty - on another table there were lots of Dr's & nurses working on a baby, I had to leave the room & I collapsed in tears. A nurse followed me out & let me know they were changing his naso-gastric tube & the IV lines but my heart nearly stopped & my eyes well up even recalling it now.

I had a few wierd comments too - I think people just don't know what to say & come out with nonsense.

Ronan H

Our post natal care in the Rotunda was second to none, in fact all aspects of the care, before and after, was pretty cexemplary in my opinion, from the janitorial staff to the Master of the hospital, everyone took pride in their jobs and worked their socks off to make sure that anyone who crossed the doorjam was treated with complete respect and in a very professional manner. It was tough to leave our son each night but it was a great reassurance that you knew there were good nurses and doctors looking after him and that there wouldnt be anything to worry about, handovers were seamless, which for me was a potential sticking point as i work in a job where handover is fairly crucial, but there never was an issue with that, everyone knew what was going on, all of the time. Everyone was singing from the same hymn sheet, so to speak!

You form such a bond with the staff that are looking after your baby and numerous days we just sat and chatted with the nurses about various things, most of them were from the Phillipines so we chatted a lot about culture, exchanged recipes etc... It was nice to know that the people you would be looking at all day actually cared to give you the light of day and werent so engrossed in their jobs that to even say "Hello" was a chore. It was like being among friends and that helped.

Another thing i found helpful was to keep a diary from the very start. Each day i would write a summary of what had happened and what weight Harry was, who was looking after him etc... When there were complications, which there were many, i always found it useful after being verbally briefed by staff, to write down what i had just been told. I found that it helped me process it in my own way and helped me understand what was going on a lot better. That is definitely something i would recommend that all parents in this situation do.

My wife was unable to breastfeed so the hospital had a steady supply of screened donor milk from Northern Ireland so that our son was getting the next best thing after my wifes milk, that was a great service. As it turns out, feeding was a major issue for Harry and it took him a long long time to get established on decent feeds as he wasnt tolerating anything really, breast milk, formula nothing really, hence why he spent 55 days on TPN overall! Now he is on a pre-digested formula with a thickener in it for reflux and that seems to be working fine. We have started weaning him onto solids also, which is going OK for now too.

The dietician from Temple Street has been absolutely brilliant over the past couple of months too, on the phone to us a couple of times a week
making sure everything was OK and things were on track, shes a legend really!

So overall i would say our post natal care was excellent, no doubt about it at all. It will be going on for quite a while more too im sure but i have no worries about it based on what we have experienced so far!

Head

Ickle Magoo

Oh Head, our son had reflux too - it's awful isn't it. Everyone is counting the grammes they gain & they can't keep down a feed for love nor money...:(

Ronan H

Yeah tis a pain alright, although its not half as bad as it used to be. He has been on medication called Losec and a food thickener since the end of January and that seems to be doing the job, however, after a feed we have to hold him up straight because if he lies back at all it will start coming back up. Also he sleeps on his belly, again because he cant tolerate much time on his back, but its working out fine. We have an AngelCare monitor for his cot just in case. Of course the W.H.O. and all the professionals are all currently saying that sleeping babies on their backs is the way to go now in order to avoid SIDS but ill tell you what, i challenge any of the wise ones to take a baby that has reflux for a week and see how they get on sleeping them on their back .

All joking aside though, i am aware of the increased risks of SIDS from sleeping babies on their fronts but sometimes its a needs must situation, and in this case Harry needs sleep, Harry needs to grow, Mammy & Daddy need to sleep, so Harry must sleep on his belly!

Voila...

Ronan

Ickle Magoo

Too right, our wee man spent about 5months sleeping on his tum on my tum - warm & cuddly but not great for sleep. We then moved him into a rocker that had his head above his hips & ever since he could roll over he's slept in his cot on his belly!

Ronan H

Oh yeah i remember them nights with Harry sleeping on our chests, great for him and a very romantic idea but not much use for Mammy & Daddy to fet proper sleep. Having said that though, it worked at the time and that seems like a distant memory now...

Is that rocker thing you have sorta like a hammock? Is it from Australia? I think i read about something like that somewhere...

Ro

Shelli

Hi guys, just to say it's great to hear all the positive stories, and I'm so glad all your wee ones are doing so well.

I'm 26wks on my first baby, and I can't imagine how scary it must be for him to come along too early! I have the utmost respect for you guys!

Going into labour early was/is one of my only real fears when it comes to being pregnant, (my friends think I’m weird that I have no worry or fear of pain or labour itself), but hearing all your wonderful stories has eased my fears a little. It’s a small comfort to know that even if babs did make an early appearance that there is still hope!

Thanks again!

Nevyn

Still tis mad that we don't have a breat milk bank here in our own country.

Ickle Magoo

Tis mad Thead, I was over-producing (hard not to with a 4lb'er!) & offered the spare milk to any others that wanted it but there was no official milk bank set up at all...fantastic I could since many of the really premie babies could tollerate bm much easier than formula but they'd arrived too soon for their mums to produce but it was just a case of telling the Dr to let the other parents know it was in the fridge if they needed it...it's a bonkers situation!

Nevyn

It used to be that there were 'wetnurses' on call to the hopitals.
My Grandmother was one for the rotunda and would bring in milk or call in to 'deliever' it. I had an excess as well and even with frezzing a lot of it, it got to the stage were was no more room in the freezer esp when I was trying to wean.

littlebug

metrovelvet wrote:

How did you feel your post natal care was in terms of helping you nourish and take care of a pre-mee?
?

Unfortunately I had found that one terribly difficult and furstrating. They did have an expressing room and I had no problems there though the privacy wasn't great(UCHG). Though the nurses in general were lovely I found it increasingly difficult as time went on. I'd have one nurse saying to me "you know you'd get her home quicker if you gave her a bottle" while another would say "you'll have some of them trying to tell you to give her a bottle, don't give in". I'd have finally got her to latch on after an hour and a nurse would be hovering over us with a syringe saying "she's been out for long enough now we have to tube feed her". I went in one day and found her screaming while a nurse said "she's not to be fed now because she was only fed 2 hours ago". My little one really had difficulty getting the hang of feeding and it would take so long to get her to feed at all that it was throwing out their routine. She was also given formula one day because they didn't see my bottles of BM in the fridge. All very upsetting when those hormones are racing round.
I was given no advice specific to feeding a preemie and certainly none on dealing with reflux... I might have lasted a bit longer BFing if I had. We'd had 5 months of her suffering and crying all day and night when my GP suggested gaviscon and things started to improve from there on in.

So all in all while the hospital staff were lovely and the day to day care of my daughter was good the whole feeding thing was very difficult for me (more so because she was my first).

RainyDay

I remember while storing my wife's expressed milk in the freezer in Unit 8, I was quite surprised to see some containers labelled 'Baby Duck' in the freezer. My first reaction was that someone was getting their baby onto Chinese food a little too early, but it turned out that one of the other babies in the Unit was a child of Mr & Mrs Duck - really....

stinkybum

Just found this thread and i wish i'd seen it before my daughter was born 6 weeks ago, after 30 weeks. I got pre-eclampsia and we had about 3 horus notice she was to be born by CS. She's in the Rotunda NICU still - she turned 2kg today and is on the road home, hopefully off her monitors tomorrow and will be on bottles every feed after tomorrow. She's on a bit of gaviscon but altogether is doing brilliantly. My milk dried up after 2 weeks when she got an infection and we got the fright of our lives.

Head - i was looking at your pictures on your site for your son Harry and my daughter was in the same bed of the 5-bed room for 4.5 weeks in total, only having been moved out yesterday to the Wing. I laughed because I recognised the white board and the chair Nice to see so many good stories come out of the Rotunda. Our treatment there has been exemplary and (apart from a horrid, rude and understaffed Diabetes Care team) i can only give totally glowing reports about everyone there. I cant wait to get her home but I'm going to be sad leaving everyone in the Rotunda behind.

di11on

Gosh, I'm getting emotional reading all your stories!

@Stinky: Really delighted that things are going well... I can only imagine how hard it is going home from the hospital without your baby.

Someone just posted about how serious prematurity is. I saw a documentary not too long ago and a doctor was making the point that medical science has come a long way in caring for and treating very premature babies, however, very little progress has been made in keeping the little ones where they are till there proper time has come.

Fair play to the OP for posting this, I can see how it would be a tremendous resource for other parents in the same situation.

stinkybum

Could you leave this face behind ??? i dont know how i do it

undecided

Ah stinky such a cutie!

Glad to hear everything is going well! Best of luck to you and your little one!

BTW to anyone that is going through this keep optimistic and try not to worry I was born at 2ib 6oz in 1980 and I here to tell the tale! With modern technology and all that alot can be achieved!

di11on

stinkybum wrote: »

Could you leave this face behind ??? i dont know how i do it

Noooooooooooooooo... surely could not.

My goodness... I don't know how you do it either. She's absolutely adorable. Well done Stinky I hope you get her home soon!

Ronan H

stinkybum wrote: »

Head - i was looking at your pictures on your site for your son Harry and my daughter was in the same bed of the 5-bed room for 4.5 weeks in total, only having been moved out yesterday to the Wing. I laughed because I recognised the white board and the chair Nice to see so many good stories come out of the Rotunda. Our treatment there has been exemplary and (apart from a horrid, rude and understaffed Diabetes Care team) i can only give totally glowing reports about everyone there. I cant wait to get her home but I'm going to be sad leaving everyone in the Rotunda behind.

Hi Stinky...

It cetrainly was difficult for us to leave behind everyone in the ICU too so dont be worrying about feeling like that, its normal. You spent every day in there and they pretty much become the leading figures in your life so to miss them is expected. You can always phone them at any time if theres anything wrong once you get home. They will say that to you I'm sure when you are discharged. We phoned them numerous times and they were always helpful. Harry is almost 17 months (14 months corrected) now and hes flying. Its a terrible thing to have to go through but I couldnt think of a better place with better people.

Head

lennox1

Reading through this brought back so many memories,good and bad.Our daughter was born at 24weeks weighing 1lb10 way back in 1983.I had severe pre eclampsia and had an emergency caesarean.I started fitting on the table!I was taken off the respirator three days later and was taken down to see my daughter on the fourth day.For some strange reason I expected to see a 'normal'baby and was shocked when I saw a little scrap of humanity who was only the size of my husbands hand.My mind was all mixed up.I was a nurse and a qualified midwife so why I thought like this I''ll never know.
She was critical for quite some time suffering infections but more worringly,brain haemorrhages x3 during the first few months.
Slowly but surely she improved and we took her home after 4 months.I won't say it was easy as for the first year of life,she cried constantly with a high pitched cry.She was re-admitted during that time for investigation in case the cry was symptomatic of brain injury.Nothing was found and we soldiered on.She hardly slept and we took it in turns to stay up with her during the night.I was unable to return to work after maternity leave as no childminder could be expected to look after a screaming baby.
Anyway,the time passed,she grew and strengthened.Suddenly at 18months she developed a high temp and before we knew it she was fitting.Rushed to hospital by ambulance and we thought we'd lose her.Thankfully she pulled through and the only sign that she had gone through it was that she was on anti epileptic drugs for a few years afterwards.
The years passed and what amazed us and other people was that she was rarely sick.No colds,sore throat,earache,none of the usual childhood illnesses.Everyone around her would pick up everything but she would not succumb.She passed all her milestones a little later than others but she got there.
Today she is a 23yr old happy,healthy young woman who is rarely sick, attained 590 points in her Leaving,a 1.1 degree and Masters in college and is in a training contract to become an accountant.Sorry for such a long post but I want parents to know that even if your child doesn't have the usual start in life,it can all work out.Good luck to all of you,and your beautiful children.