Mum's perspective

Mums' perspective


Real mums' experiences

Some very special mums have kindly shared their experience of having a premature baby or babies with us. If you have not had a premature baby we hope it will give you an insight into what babies born too early go through, as well as their parents. If you have had a prematurebaby, you can probably relate to more than one of these experiences. So many of us understand the journey you have been on and our organisation is here, if you ever need any support or help.



This is my story about the birth of my premature baby. its a bit long. My name is janette dolan. I am from clara in co Offaly. I am a wheelchair user. My legs are amputated above the knees. I had scoliosis and when I was 12 I got rods put on my spine to straighten my back. When I turned 30 in November 2010 I was single and believed I would never meet anyone or have any children. In may 2011 I met my boyfriend Stephen and we fell madly in love.

In January 2012 I came off the pill to see what happened. Wasnt expecting to get pregnant straight away as I had read that it could take up to a year to get pregnant after coming off the pill. In march I found out I was pregnant. We were so happy. My parents were worried if I would be able to cope with being in a wheelchair and if I could carry a child with the rods in my back. After the original shock they were delighted for us. We had a couple of scans then for then next 6 months and everything was perfect. We found out we were having a little boy. The 3d photos were amazing. My baby was due on 20th November 2012 and my c-section was booked for thursday 15th november.

On Sunday 30th September me and my boyfriend were watching the Ryder cup when my waters broke. I rang the hospital to say I thought they had broken and they told me to come straight down. The whole way down I was feeling stupid as I was convinced that maybe I had weed myself without realising but after getting checked my waters had broken. The next day a scan showed the baby had no fluid at all around him and was weighing just 1.66 kg. it was decided I would be kept in and get regular scans to try keep baby in as long as possible. I was told that if i went into labour at any stage i would have to get an emergency c-section as he was in breech position.
 
On Wednesday morning 3rd October I woke up and I was bleeding. I was checked and I was in labour. I was so scared as i was only 33 weeks. I was brought straight down and had a general anaesthetic c-section. At 07.04am on 3/10/2012 the most amazing beautiful little person i have ever known was born. Ronan Christopher weighed 3 pound 8 ounces (1.66 kg like the scan showed) my boyfriend showed me pics of him. It was 9 hours before I got to see him and it felt like the longest 9 hours of my life. He was breathing completely on his own. He was so tiny in the incubator and it was both amazing and scary that first time I held him cos he was so small. The day before i left hospital i had to go to a talk for first time mothers on bathing the baby. there was 9 other mothers at the talk and i was the only one there without my baby. I will never forget that horrible feeling. i went back to the room after and just cried for the day.

The day i left hospital was so hard for me. I will never forget the hurt and upset I felt that day. Also I found out then I only have half a womb and that my baby ran out of room so my waters broke :-( the next week or two he was putting on nice amounts if weight. He was getting tube feeds of my expressed milk and nutriprem fortifier. They discovered he had a heart murmar and lymphadema. He developed an infection and his oxygen levels kept dropping. Everytime things were going well something happened and my happy feelings went down with a bang. It was such a rollercoaster. They discovered he had horseshoe kidneys too. The poor little thing was getting blood tests all the time.
 
Ronan wouldn't latch on at all so we started him on bottles in the hope he would eventually latch on but he never did.He was doing great on bottles and after 5 weeks he was ready to come home. I was brought in to stay a few nights to do all his feeds. The day before he was expected to go home I had to bring in my own teats and bottles he would be using at home. Unfortunately he wasn't taking to any teats and his oxygen levels started dropping again so I was sent home yet again without my baby. A week later after finally finding a teat he would drink from and after he was sent for an echo on his heart I was brought in again to stay. Luckily he drank all his feeds and I was able to bring my baby home on 15th November, the day I was originally meant to give birth to him and after 6 weeks and 1 day in SCBU. The last 3 and a half months have also been a rollercoaster.
 
A week after he came home he was screaming in pain one night. We couldn't calm him so brought him back to hospital. They discovered he had 3 hernias and the 2 hernias on his groin were popping out and causing him pain. He ended up getting an operation just before Christmas on them. They didn't operate on the hernia on his belly button but luckily that has now closed over. He got bronciolitis in January and wouldn't drink his bottles. Dietician took him off breastmilk altogether as they said his weight was off the chart altogether. He was put on a catch up growth formula but it was very thick and he wouldn't drink them. Since then he was put on a different formula and we changed bottles a few weeks ago and his feeding has gotten better since. We had problems with colic and reflux too but that is alot better now. He has started solids and is like a different child. I was stressed for so long over his feedings and him not putting on weight and didn't get to enjoy being a mom but I'm alot more relaxed now and I know he is thriving in his own way.

Being in the wheelchair limits me in some ways but my boyfriend is great and my mum and dad help alot too. 2 and a half years ago my life was very different and I never thought I would have the most amazing beautiful little boy enter my life and change my life in the best way possible. Am so looking forward to every day with my little boy watching him grow and taking it all in. Altho those first few weeks were so hard in SCBU I wouldn't change it for the world as it has made my boy into the wonderful smiley gorgeous nearly 12 pound precious gift that he is. Will have to decide if i ever want ronan to have a little brother or sister but i dont think i could go through all the pain again of my baby not coming home from hospital with me but i know that next time it might be different as i know why my waters broke so hopefully i could be monitored alot more to try make it to full term but for now im just gonna enjoy lots of time with my Little miracle. I'm sorry for rambling on but I guess I wanted to share all the emotions I have been through since my little fighter entered my world. Thank you. Janette Dolan x

Cara’s story

Cara was born on 11 January 2010, 31+3 and was 2lbs 8oz. The pregnancy had been very smooth and the only complaint or concern was raised blood pressure from about 18 weeks. It was monitored throughout and in December 2009 I was sent for a growth scan in Holles St as they felt something was not quite right. Cara’s size was checked and all deemed fine so off we went thinking everything was ok and enjoyed the Christmas period. The raised blood pressure continued to be monitored and it was discovered that it had gotten worse just after Christmas. I was told to go into the day clinic in the hospital for my blood pressure to be monitored; little did we know the events that would unfold. After a few routine tests it became clear that Cara was not doing well at all and I would have to deliver her asap. There was no talk of induction just emergency c-section. To say we were shocked was an understatement, we had doctors coming up, rushing around, giving me steroid shots, asking me to sign forms and practically pulling the clothes off my back. We were so unprepared for this, Pauric, my husband quickly phoned family to tell them while I was prepared for theatre.

Cara was born at 1:18pm that day, we were given one quick look before she was rushed up to NICU. Pauric got to see her later that day, but I wasn’t allowed until the next morning, that was very difficult, I was in a complete state of shock! We will never forget the first time we saw her in her incubator, so tiny and fragile attached to IVs and monitors. She was so beautiful, hard to believe she was our baby lying there. We felt so helpless, all we could do was be there by her side day after day.

Cara was deemed a relatively strong premature baby by the doctors as she breathed on her own straightaway and only needed a little bit of oxygen. However three days after her birth we were told the devastating news that she had suffered a right sided grade 4 IVH, the worse level of brain bleed. Our world came crashing down on us at that point, I can honestly say from that moment we have had to become different people and entered a whole new world we didn’t know existed. We didn’t know what to think and had so many questions and thoughts; what would this mean for our baby girl? What kind of future would she have? Would she walk? Would she talk? Would she go to mainstream school? The doctors explained what it meant but really they could not tell us what effects the bleed would have, it was a matter of waiting to see how Cara developed as every child is affected differently and the brain was still developing. Cara was in hospital for 46 days, a short stay compared to some, however an extremely long time for us as her parents wishing and willing her to get better so we could bring her home. Leaving hospital without her was very difficult but we kind of went into autopilot. Every time we would go in to see her we would be discussing fluid in the brain levels, blood transfusions, antibiotics, hearing tests, eye examinations, what was this new world we had been thrown into? All we knew was that she was our baby and we loved her no matter what.  She battled through her NICU stay overcoming many obstacles.

Cara came home on 26 February 2010 weighing 4lb 3oz, we were delighted to get her home although very nervous about looking after such a small and fragile baby. We got stuck in and life revolved around check ups, appointments and tests. Cara was difficult to feed which also added to the stress of everything else. I’d look at other babies drinking their milk happily and yearned for that to be Cara. I found it hard to relate to other new mothers as I felt I had the weight of the world on my shoulders concerning Caras development, our worries were very different.  As Cara had had a brain bleed is was likely she was going to have some problems with her development so we were referred very quickly for therapy: physiotherapy, occupational therapy and speech therapy.

Cara was eventually diagnosed with cerebral palsy at about 17 months. Initially we were told Cara was hemiplegic, meaning one side of her body was affected and that she would definitely walk. It then became clear that Cara’s right leg was also affected changing her diagnosis to diplegia and we were told that Cara would struggle to ever walk. We were devastated once again. The MRI confirmed this that in fact both sides of Cara’s brain had suffered damage called Periventricular Leukomalacia (PVL). PVL basically translates to ‘white matter damage’. The white matter of the brain controls movement and mobility. PVL is non progressive so the damage won’t get any worse but there is no cure. PVL almost always leads to Cerebral Palsy. We are not sure what caused the damage on the left however it is felt that any change in pressure to one side can have an effect on the other.

Cara learned to roll over at about 7 months (5 months corrected) which was not too far off the norm, she learned to sit up unaided at about 1 year and then her physical development really slowed down. Cara is now 3 years old and has just learned to 4 point crawl, albeit slowly she can now get around to her toys and loves the independence. She can get out of sitting and just before Christmas learned to get into sitting. The cerebral palsy means that the muscles in Cara's legs are very tight, which prevents her from doing many day to day things others take for granted such as sitting with her legs straight out in front of her. Unfortunately Cara's left arm is also affected by the CP, she does use it and it is an assistance to her but it does hold her back quite a bit. Cara attends weekly physio and occupational therapy and also has to go into a standing frame every day to ensure her hips and bones develop properly, the frame also gives her the opportunity to weight bear on her legs which she doesn’t get the opportunity to do naturally. We also have to do daily physio exercises with Cara. In every other way Cara is developing extremely well and we are over the moon about this. Her speech is good and gets better every week, she is a very intelligent, sociable and happy little girl who loves animals, Peppa Pig, Dora the Explorer, Mickey Mouse Club House and playing on the i pad. Just like any other three year old she knows her own mind and is very determined. She really is a joy in our lives and a beautiful girl and we are so proud of how far she has come given her rough start in life.

All we want for Cara is that she can have an independent life, join in with activities especially with other kids and that she is happy and pain free. Cara was recently accepted for Selective Dorsal Rhizotomy surgery in the USA and we leave in a week for her operation in the hope she will learn to walk one day……..the start of the next chapter in Cara’s story!

I had my first son June 11th 2005 when I was just 16 he was born at 27+3. I was on my own living down in Drogheda with no family and friends around to help me. It was one of the scariest times in my life to be such a young mother but to watch my tiny son Paul be born at 2 pounds 3 oz fight for his life. His father was more a less not there so I moved back to Dublin the day I turned 18 and vowed to have no more children. I have had to and still do attend Hospitals with Paul on a weekly basis. From prematurity he has mild cp, chronic lung disease, brain neurological defect, sleep apnea which he uses cpap nightly for, a growth disorder and behavioural problems came from his sleep apnea, delay in both his sight and hearing and alopecia. I thought moving back to Dublin would mean I'd have more support but that proved to be wrong.

 September 2011 I met a man and thought I had landed on my feet. I explained to him that I wanted no more children as I would not be able to go through another pregnancy in the fear I would have a prem again. He said he understood and was happy with that. I came of my mirena coil the November and was using the pill. He told me he was terminally ill and was infertile and could not have children. Gullible me believed him and one night in April I knew I was after conceiving he had trapped me to get me pregnant but I was brave enough to end the relationship with him leaving me to go through all my pregnancy alone. As I was a high risk from having Paul so early the Coombe start seen me from 6 weeks and I was giving weekly scans.

Everything seemed to be going well up to 17+5 weeks when I got very bad pains which were similar to my contractions on Paul. I was admitted straight away as I was threatening to lose my baby. If I thought back when I had Paul was the scariest point even I could not have been so wrong as this was more hell than anything else. Although my unborn baby was not planned I wanted to do everything in my power to keep him safe as I felt I failed Paul by going into labour early. I failed as a mother in my eyes and was just about to do it again with this precious baby growing inside me. I agreed to stay in the Coombe and struggled to get help with Paul while I was not around. The pains continued on a daily basis but I was not allowed to go on the ctg or hear his heartbeat on the dopplex as I was made aware that up until 24 weeks if anything happened it would be classed as a miscarriage. They done an internal scan to see if I needed a stitch put in but I didn't so I was put on progesterone pessaries to try stop my cervix from softening and dilating. Not been able to hear my baby’s heartbeat got me so depressed scared and anxious and I kept thinking the worst. I was lying in hospital for weeks with no visitors and all the time in my hands to think.

Slowly 27weeks crept up on me and I went off my head I started pacing the hospital corridors, not eating sleeping and constantly crying afraid I was going to have my baby any day. But 27+3 came and went so I started getting more at ease. On Saturday 27th Oct I was in the toilet and noticed some spotting I showed my nurse and she told me I had a show. I didn't know what a show was as never had it on Paul and asked to see my doctor. Thankfully my team was on that morning and when my doctor came up she explained that I can have many of these shows but as it was small it was nothing to worry about. It was hard not to as I was only 28+2. I went down the cafe for a cup of tea at half 1 and when I went back up I was getting some cramps so my nurse put me on the ctg. I knew something was wrong when she asked me to turn on my side as we could never pick baby's heartbeat up that way. Still nothing and she kept asking me too change positions before I knew it my doctor was at my side with a monitor to do an ultrasound. In 1 quick second both the monitor and ctg were turned away from me with concerned looks from both my doctor and nurse.

Before I knew it there were 4 doctors around me and 1 was telling me they were putting a canula in. I didn't know why and next I knew my clothes were whipped of me and I heard the word theatre. Frantically I jumped up screaming shouting I was not going to theatre they were not taking my baby from me. That's the last thing I remember. I had an emergency c section and at 3:16pm Tadgh was born. He came out flat lying and had to be intubated 3 times before been ventilated. He was only ventilated for 8 and a half mins then put onto cpap. When I came to after 4pm I hadn't a clue what happened or where I was. A nurse explained I had my son who weighed 2pound 14oz none of this made sense to me it was all a blur and I lashed out at them and had to be sedated. Even after that when I came to I did NOT believe for 1 second that I had my son and blamed the hospital for taking my son from me without my permission. I wasn't able to see him till the following day and when I went in he looked so beautiful and precious to me I just knew that he was mine and in the best hands. That evening he was giving 1ml of mlk at just 30 hours old. I knew then that he was doing so well but I could not believe that would be it. Everyone was saying it will be easier as you have had a prem before but it was harder this time round. I knew how quick prem babies could go downhill and kept expecting this to happen Tadgh. When I looked at Tadgh I seen a slightly bigger Paul and convinced myself all the bad was going to happen. But I was wrong again I got to hold him when he was 5 days old and started doing all cares when he was 6 days old. All that was going against him was that he was totally dependent on cpap. After 3 weeks in ICU he was promoted to hdu. He was gaining weight and doing great apart from cpap each time they did a trial basis he needed to go back on after a few minutes. Finally he was managing a few hours of it and then miraculously came of so was promoted to scbu at 32 weeks.

He started on bottles but kept having Brady’s and desats so his caffeine was upped. All was going well so he was weaned off the caffeine. He was been prepared for discharge at 35 weeks. The day beforehand I explained I wasn’t ready to take him home as he kept having dusky episodes whilst feeding so they agreed to hold off for a few more days. The Friday he was 35+1 and had so many bad dusky episodes he needed 100% free oxygen and put on nasal prongs. On the Saturday they decided to remove the prongs and put him back on caffeine which stopped his dusky episodes. A week later he was been weaned off the oxygen and On Thursday morning Dec 27th I was told I could take him home.

I could not believe after 9 long weeks he was coming home. I was such a wreck when I took him home and would not sleep or go up to the bedroom so we stayed downstairs and 9 days later I had a visit from Irish Premature babes with an angel mat. That was it my nerves started going all thanks to this mat. At 39 weeks he started vomiting projectile so I took him to the hospital where they thought he had Paralytic Ileus thank god he hadn't At 40 weeks on his due date he had laser treatment done on his eyes Then when he was 4 weeks corrected he had an inguinal hernia removed. He is now 21 weeks or 9 corrected and is a happy bubbly baby who is reaching all his milestones. His major problem is still around feeding and I was advised to start him on the spoon which I did last week and he loves it. We are waiting to see slt regarding his feeding and ENT for his vomits and snoring. All his brain scans were normal and he just has follow ups for his eyes, feeding and for his cutis aplasia which is a pigmentation birthmark. He escaped pretty much everything his brother got and has and is doing great.

Been a single mammy to any child is hard but when you’re doing it alone to 2 prem's it is very hard but it is also most rewarding. Instead of blaming myself now I feel blessed to have been giving my precious boys. I don't hold the hospital responsible but thank them as I had placental abruption and if it wasn't for them Tadgh would not be here today. I am still doing it alone with not much help but Paul is the best big brother and when I look at my 2 son's I know I am very lucky and have everything I will ever need

Cian's Story

Our little boy is Cian and he is the light of our lives. 
He is now 14 months old and was born on 6th May 2009 in Holles St at 30 weeks gestation. He has recently started walking and is an incredibly busy little man, moving constantly and getting into all the messy spots knowing exactly where they are and how to get into them.Tomorrow he will be 1 year corrected and if we knew when he was born what we know now, we would have had a much more comfortable introduction to parenthood.

Cians story begins at week 7 when I experienced some bleeding. We had it checked out but as doctors couldnt find a heart beat at that early stage we had to return to Holles st 10 days later for another scan to confirm that he was fine with a "very strong" heartbeat. We were delighted and extremely relieved.Everything from then on seemed to be going very nicely. We had booked a trip to New York after Christmas as a nice present to ourselves but in light of the bleeding we opted to postpone this and save our money for what was to come..

At week 28 I started to suffer from back ache and after some visits to my GP I was advised not to work for foreseeable future.Little did I know that I would be a mother before I worked again at that stage. Next was the bank holiday weekend in May on a nice saturday evening and we were looking at Leinster V Munster in the Heineken Cup semi final with my family. We had some dinner and to make a long story short I finished an enjoyable evening in Unit 3 Holles when my waters had broken unexpectedly. I was 29 weeks and 5 days that night and the staff confirmed that my waters were mostly, if not all gone and I needed to remain in hospital for the next 10 days at the very least.

We were told that baby may arrive in that time and if not, we would be inducing baby by week 37. Either way my due date of July 14th was well blown out of the picture as we were now 2nd May.I remained in Unit 3 under close observation until I experienced labour pains 4 days later on wednesday lunchtime. Cian came into the world at 20:50 weighing just 1.65kg or 3lb 11oz. I was so happy I got a look at him for a moment before being whisked off to ICU 1 as I didnt think I would even get this opportunity. He could breathe for himself from the very start as I was lucky enough to have enough time for steroid to work. When we did the chance to go up into the ICU later on that night to see him and get a proper look, I could hardly believe he was here. I looked at him and thought he was inside me 2 hours ago and now here he was thankfully all present and perfect in our eyes.

I couldnt keep my eyes off him from then on....I wanted to stay by the incubator all day every day after that..I hated leaving to express milk as I remember missing him until I got back. My husband came in after work every evening and dragged me home so I'd have dinner and for that, I thank him even though I didnt thank him at the time. For the 30 days Cian was in Unit 8, I couldnt think about anything else, couldnt think about eating, cooking, washing clothes, work or any of the things that had been so normal to everyday life beforehand.

I thank our families for looking after all of this and for feeding us whenever we were too tired after a long day in ICU because without their help, it would have been a difficult time made a lot harder. Cian made his way during those 30 days from ICU1 into ICU2 as he didnt require CPap or oxegen and as each day went by we could see each day making such a huge difference especially where his feeding volumes and weight gain were concerned. He then went into Unit 8B when he got out of his incubator and here he struggled quite a bit to maintain his temperature. He wore a vest, a sleepsuit, a cardigan that was for newborn baby but went down to his knees, 4-5 blankets and 2 hats. His cot was kept at the radiator and I can remember sitting beside it in May some days were warm enough but that made it extremly warm but what mattered was this seemed to be working for him and soon enough he made it to what the nurses called "the departure lounge" in special care where it was cooler. By now his temperature was fine, it was his reflux was depriving him of some oxygen and this was serious enough that he did a night back in ICU2. After numerous tests the docs tried giving him infant gaviscon as a last resort and problem was sorted.

We got home the next week and I dont think I could ever forget how we felt that morning going to collect him.. a mixture of sheer delight and relief mixed with absolute terror as to how were we going to be able to complete what a team of nurses had been doing. Cian is our first and only child and as we hadnt done this before we were terrified.He weighed 5lb 2oz when he was discharged on 5th June 2009. We found the staff and doctors in the unit very nice and helpful. They loved their jobs and they loved our Cian. He had made so much progress it was remarkable and thankfully he has been extremely lucky with everything regarding his health ever since.

I have returned to work since March this year and Cian attends creche just beside us in Greystones. He just loves the other little children that are there and he comes home in the evenings so happy which is a great peace of mind after everything that happened.We dont know why my waters broke so early and we probably never will but we are so happy and lucky to have such a strong little boy that loves his sleep and food.

My story is a long one story of ups and downs and eventually success. In 1996 I got pregnant with our third child and we were excited and as for our two girls who were 8 and 6 they were over the moon. At 17 weeks our whole world changed, my waters broke and I was home alone with the two girls. I went to dr who said I was fine but I knew I wasn't.
 
On 5th of July at my scan while Joe and the girls were in the waiting room the lady doing the scan wouldn't answer my questions and called in Dr Malone - he was Irish like me- I knew he knew and Joe knew there was something drastically wrong. I had no fluid around my baby and other signs on the scan showed chromozone defects. After a weekend of no sleep dye was injected into me too see was I still leaking fluid and a chromozone test was done. I was still leaking  the future looked bleaked I was told there was no hope that I would carry him to a feasible term but they had no idea who I was carrying. I started hemmoridging at 20 weeks but we still held on. They hospitalised me at 24 weeks and were amazed that we were still in one piece.
At 26 weeks our son was born they said he would never cry - he cried - they said he would never breathe on his own but after 10 weeks of intabation he breathed on his own. Anything that was going he got it anything that wasn't going he got it but always, always  when we were in a state of desperation he opened his eyes to me when i spoke to tell me to never give up mammy because I won't. He had less than 1% of survial but he did . He was on TV he was talked about by the head dr of the NICU in her lectures - another irish woman- of how his survival amazed them all. After 51/2 months we brought our son home to his excited but slightly neglected sisters.

We paid numerous visits too hospital with different obstacles but he came through them all. He is now 16 and lives life as normal as any 16 year old. He hurls he golfs and apart from his lungs nothing holds him back. Last year he fractured a bone in his neck but that didn't stop him he faced it like every other obstacle in his life with strength and depth of a man that knows nothing else only to fight for normality. He sat his junior cert with his collar on his neck he looked for no special treatment just carried on. There is so much more too him that I could fill a book. He is our miracle, our hero but most of all our brave son. Never give up when the days are dark there is always a light at the end of the tunnel.
Joey was born on 25 August 1996 in New England Medical Centre, Boston , USA. We owe them our lives and someday we will manage to take him back to show him their miracle.
 
 Our handsome little man Jamie was born at by emergency section at 33 weeks as a result of Chylothorax (fluid between his lungs and chest wall). I had a normal pregnancy up until 32 weeks when I was then admitted to hospital as a result of pre-eclampsia. I had a scan the following day and was told the awful news that something was wrong with our baby which is most often found in chromosomal disorders such as Down's Syndrome (yes this is how it was explained to me, when I was on my own without the support of my husband). I was also told it may be Chylothorax. To say I was devastated was an understatement, I just couldn't believe something was wrong with our baby as I had had a repeat Anatomy scan at 28 weeks to get a better scan of his heart and everything was perfect. I had a thoracentesis (where a needle was inserted into my stomach and into Jamie's chest to extract the fluid) which was successful but it was clear that the fluid was still flowing back into his chest. Four days later they scanned me again and said that his heart was failing. He was born 2 hours later and immediately ventilated and had 2 chest drains inserted.

He spent the next 8 days in NICU in the Coombe Hospital Dublin where he made a miraculous recovery which mystified the Consultants :) He was taken off the ventilator after 5 days and we finally were able to hold our 4lbs bundle of joy and hear his little voice. No words can describe the amazing feeling of holding him skin to skin for the first time. His chest drains were removed the next day as the production of fluid had stopped. We were told he may have Noonan's Syndrome, Cystic Fibrosis and many other conditions but thankfully all tests came back clear. He then spent a following 14 days in Special Care to build up his mouth muscles and sucking skills :) 

Those three weeks felt like a lifetime and it took me a long time to come to terms with what had happened as I'm sure parents of premature babies will know, this amazing amount of adrenaline comes along and saves you from sinking into a deep and dark depression. It keeps you focused and helped me to go into autopilot, expressing breast milk and going into the hospital early in the morning until the latest possible time in the evening, spending every possible moment with Jamie. Just when we thought they would never remove his PEG tube, Jamie turned a corner and started sucking like his life depended on it. We were able to do a 'sleep-over' in the hospital and brought him home the next day weighing 5lbs 4ozs and our wonderful journey began.

The adrenaline lasted four months for me where I was able to function on very little sleep and lived in a bubble of indescribable love. It then hit me just how lucky we were to have such a healthy happy baby who had had such a tough start in life. The trauma of an emergency section also hit me and I found myself very tearful. I'm very lucky to have an amazing husband, family and friends who gave me so much support through those tough times and the darkness faded away.

The next 7 months flew by as our little man grew up so fast :) He has gone from strength to strength where he now weighs 22 lbs and is meeting all his developmental milestones!  He is also eating us out of house and home :) I look at him now and can't believe he was that tiny little baby fighting for his life. 

We can never thank all the wonderful Consultants, Registrars, nurses and other staff at the Coombe Hospital enough. The NICU and Special Care Units have very special staff working there who will always hold a special place in our hearts. We know that our story is very positive and that we have been so lucky that Jamie is so well. We appreciate that this is not the case for many parents out there and this is why organisations like Irish Premature Babies are so important. I hope our story gives some hope to parents of premature babies.
My name is serena dunne and i live in cavan, i had prem twins at 26 weeks, a boy who weighed 2lb 3o, and a little girl weighing 1lb 6o, .They were born on the 01/01/2011, they were the first twins born in ireland, i named them fiachra anthony, and derrin mocharaigh,. Derrin was so small she fitted in to your hand, fiachra was born with club feet both of them, derrin was intubeated ten times in total which means she has narrow airways, so when she crys ,she cries like a newborn baby, but in time as she grows her airways should also grow, as for fiachra because of his club feet, he had to wear casts on both legs for 3 months before he got his op then he had to wear john brown boots speciaclly designed for club feet, he had to wear them for 23 hours a day, his feet are now perfect, but he still has to wear the boots for 12 hours when he goes to bed, and has to wear them for another two years, 
 
they were whisked away to the coombe hospital in dublin, to the neonatal unit for sick babies which they spent the first few months there,.The doctors and nurses were brillant, in time fiachra was sent home to cavan general hospital, without his sister as he was alot better, but then tradgedy struck, as he got nec, an had to be rushed to crumlin, to have an op where 10 centimetres of his bowl had to be removed, they also removed his appendicx, he recovered well and both kids left both hospitals on 29th of april 2011, where they spent a further 1 months in hospital, they finally got home at the end of may 2011,
 
they both attend crumlin for appointment , they both are doing great now, they still ave the odd flu or sickness, but we just get on with it, lol,i dont know what i would do without them , as they are my life, and im very over protected of them, as any mother would be,
 

When I was 29 weeks pregnant my partner and I split up. I was devastated but he no longer wanted to be in a relationship with me, he promised to be there for the baby when she was due 2 months later. I would later find out I would be her only parent as he did not want any involvement. 2 weeks later when I was 31+2 weeks pregnant, my waters broke, I was at home alone and I didn’t know what to do. I was terrified. I rang the rotunda and they told me to come straight in.

The  doctor said that yes my waters had (half) broken so they needed to keep me in for observation, I didn’t know what was happening ,I was in shock, I was terrified that the baby was coming early, was she going to be ok?, why was this happening? All these thought and questions racing through my mind.

The doctors told me that they wanted to get me to at least 34 weeks but then they would need to take baby out. I was given injections every day to help the baby’s lungs develop. In hospital I was trying to prepare myself mentally for having my baby early, while still dealing with the upset of the relationship break up and of being on my own with the baby when she arrived, but friends and family promised to help out. I didn’t know how I was going to cope being a single parent.

I was 3 days in hospital with regular checks from nurses, I felt grand was in no pain until later on the 3rd night.  At about 12 am I felt strange felt a sort of contraction I thought, so I told the nurse. About 20 minutes later the pain was unreal, the baby was coming and now. I was rushed to delivery with no time for pain relief and teagan was born at 1:03am on the 14th may, weighing 3p14oun. Only an hour after I felt my first bit of pain.   It all happened so fast.  Teagan was rushed to intensive care; I only saw a glimpse of my baby girl after she was born.

After an hour or so they brought me to see her in I C U, I didn’t see a baby all I saw was tubes and bandages, she was so tiny, I think I was still in shock wanted to cry but I couldnt, there was my baby in an incubator and I couldn’t hold her, I listened to the nurse but I don’t think I actually heard what she was saying, the next few days would be critical, my baby was here now, 2 months early.

The following days I was on auto pilot, I was lucky I did not live far away so I spent my days in the hospital with her. The hardest thing was me leaving hospital without my baby, going home to a house full of baby stuff but my baby would not be there yet. Every day I saw parents bringing their baby home, to me it was not fair, my baby should be going home too. Every night I left to go home I didn’t know if I would get a call to come straight back in or if I’d see her again the next day. Every day I grew more anxious and I felt alone as I was the only parent teagan had now caring for her. I felt jealous of other people that both parents would spend hours in ICU with their baby and teagan only had me. The nurses were a great support, but when you’re spending hours on your own looking at your tiny baby and then you’re going home without her, it’s the worst feeling in the world. Some people say things like, “well at least you can get some sleep”, I hated these comments, how do you sleep when your baby is in intensive care in hospital and you can’t stay with them at night, how can you sleep knowing this.

When teagan was one week old, they discovered she had no palate and was diagnosed with a cleft palate. This would make feeding difficult .Which it was. She had to be tube feed first and then use special bottles which I had to squeeze the milk out of into her mouth. At that stage I was just numb from her early arrival so anything else added on to her health problems I just had to deal with.I had no choice but to.

 I had to live one day at a time, praying, hoping every day teagan would get that bit stronger.Teagan finally was well enough to go home on the 14th June she only weighed just over 5pound, she was still really tiny, she fit in my hand, but I couldn’t wait to get her home, either could my friends or family, they had never met her.

But gradually the excitement turned to fear, I was at home on my own with a premature baby. It was tough, very tough; she was so small even changing her nappy, clothes was a task in itself. At her 6 week check up, we were on the way home when the hospital phoned to ask me to bring teagan straight back in, she needed an emergency blood transfusion; they had found this from the blood test. Again a complete shock to me, but she had it and she was fine. I was so nervous all the time, she vomited after every bottle, screamed most of the time, and her breathing was not the best. I constantly tried to stay awake at night afraid to go asleep. I was drained physically and emotionally, I was diagnosed with post natal depression, with all that had happened my doctor was not surprised. What got us through the next few months, were my great friends and family. They came around and looked after the baby and me. I will always be grateful to them, they are my angels.

Teagan was classed as failure to thrive and it was hard for her to gain weight, constant checkups and weekly weigh in's were now a normal part of my life and hers, but we got through it all, me and my tiny baby.

 

Teagan is 2.5 years old now. She had her cleft palate surgery at 9 months, which they then diagnosed her with Pierre robin syndrome, a rare syndrome associated with cleft palate. She has a small chin, jaw mouth which can cause further breathing problems. She is under a team at Temple Street which regularly see her.  She has been ill a lot in the past 2 years but this is normal for us. She has a speech therapist and will need regular hearing tests as these too are complications with cleft and Pierre robin.   She is a happy beautiful girl, loves playing and chatting away to friends and me. She will have problems with her health but after all that she has been through so far I know she will be just fine.

Having a premature baby, is not easy, especially if you’re on your own from the start, but you learn to cope, to let people help and most of all you  realise that your  prem baby is the greatest gift you will ever have. Premature babies are brave, strong, and they are unique. I am grateful my tiny baby defeated the odds, and is now a happy, loving toddler.

Tammie weldon

 

 

The Angel and the Miracle

Twins? Seriously? You’ve got to be kidding me?

We’ve an 18 month old at home, how are we going to cope?? The tears started to fall, I couldn’t believe it. We could never manage, let alone afford, 2 more children at this time. Little did we know our life was certainly going to change, but for very different reasons.

Over time it was discovered our identical twin girls were Monoamniotic, a rare, in fact 1 in a million, twin pregnancies. They were both in the same amniotic sac, therefore a danger to each other from the get go. The mortality rate is 50%, so I was closely monitored, and constantly reminded by the hospital they could die at any moment. The main reason for death was cord entanglement, without this special protective sac they are a danger to themselves and each other. The longer the pregnancy continued the higher the risk.

My initial reaction of how would we cope had now changed to how would we cope without our beautiful girls? They were soldiers in our eyes, little fighters already. Such a hard start to life and they were still in the womb, they hadn’t even ventured into the world. Twice a week I was routinely scanned and twice a week I’d see 2 precious heartbeats, 20 fingers and 20 toes, growing and developing, they were defying the odds.

Until June 8th 2010, the day our lives were turned upside down. A routine scan, at 29+6 weeks, showed only one of my precious heartbeats, one of my soldiers had been taken from us. I was in a daze, I knew it could happen at any stage, but I chose not to believe it, as they were doing so well. The race was on to save our other little girl as she was making herself anaemic trying to save her sister. After meetings with specialists the decision was made to have an emergency section to save her sister. She was going to be 10 weeks premature but we all felt the risks in the womb greatly outweighed the challenges in the outside world.

My girls were born at 4.30 that afternoon. Emily was born sleeping, weighing 2.5lbs, perfect in every way, she just looked so peaceful. Heidi was born screaming, weighing 3.1lbs, ready to face the next big battle of her life on the outside world. They were just beautiful. We cuddled Emily for hours, days in fact, trying to keep her warm and willing her to just open her eyes, she was so perfect. It just didn’t seem real. We’d one girl fighting for her life in ICU, whilst the other girl was in our arms but lifeless. We took lots of pictures, received prints of her hands and feet, a lock of her hair and had a lovely burial ceremony for her on 14th June.

Heidi was rushed to ICU where she was made stable and fed vitamins through her belly button for the first couple of days. I didn’t get to meet her until next morning and it was so surreal. We knew they were tiny as we had held Emily, but Heidi just seemed so helpless, lost, in this big incubator. The days turned into weeks, she had good days and bad. She survived intubation, CPAP, 2 blood transfusions, MRSA, and a blood infection. Heidi was fighting it all, and winning. I spent every possible minute with her; watching her every move, watching her grow and thrive before me. I became obsessed with expressing my breast milk, as I could see the benefits right before my eyes.

My life revolved around the ICU and getting her home to meet her family and friends. It was such an emotional rollercoaster trying to grieve, be strong for Heidi and not let our other little girl at home suffer from our current predicament. I kept a journal, a day to day account of everything she went through in the hospital, all the treatments she received, little comments on how we were feeling, how great the staff were and how big she was getting. I found this very therapeutic; it was like my own little counselling session each day.

8 weeks on, the big day finally arrived. I could have screamed from the rooftops when they gave us the news we’d so eagerly waited to hear. Yes we were worried, could we manage with such a small delicate baby? Would she survive without her machines? Of course we would, she was our daughter, and we were the best people to take care of her.

July 29th 2010, our fighter was discharged, a whole 5lbs of gorgeousness. She is a true miracle, loved by all, especially her big sister Zoe, and guarded by her twin, Emily, from her playground in the sky.

Danielle's journey with Cameron

In March 2009, my partner Mark and I were overjoyed to find out i was pregnant expecting our 4th child. This joy however was short-lived when 5 weeks later I started bleeding. I was rushed into hospital where the doctors broke the news to us that they could not find a heart beat. I couldn’t believe the joy I had 5 weeks ago had been taken away. There was no time for grieving as I was admitted for a D&C, it was a very difficult procedure to accept. Both of us were heart broken, after having 3 healthy babies it was never something I ever really thought would happen to me, It was a horrible time for us. 
Our sorrow was lifted when only 6 weeks later noticed I was feeling sick a lot so I went to the doctor who confirmed I was pregnant again, I was shocked it happened so quick but I was so scared, every pain or niggle I felt I thought it meant I was loosing another baby. On May 26th, my birthday I received the best birthday present ever, I was scheduled to have my scan and was told that the baby was fine and had a good strong heartbeat. It was amazing after such a horrible time and scary first few weeks of pregnancy, that I could actually be happy to be pregnant again. When I got to 14weeks I felt I could actually relax and start enjoying my pregnancy.

When i got to around 25 weeks pregnant I became very anxious when I started getting very strong contraction like pains. I went straight to the hospital again and I was admitted where they gave me a steroid injection to help develop the babies lungs if it was born early, this was such a shock for me, I was only 25 weeks pregnant, what would happen if I gave birth now, would the baby be able to survive, I couldn’t loose another baby, all these thoughts kept going through my head. I was kept on the labour ward for a week where they had me on a cocktail of all sorts of drugs to slow down the labour, thankfully it worked and after 2 weeks I was discharged. It was a great relief to be home and that my baby was still safe inside where it belonged for the time being, but I still felt the worry that something could still go wrong. 
I never forgot our lost baby and had calculated when he or she would have been born, the 4th of November, this date has even more importance to me now as I remember this as the date I work up to very heavy bleeding and very strong pains. I tried to stay calm about it as I learned that stress can make this worse, we tried to keep things normal so Mark my partner went to work and I sent the older children to school and then I went to the hospital. When the doctors realised what was happening there was a great sense of panic almost, the staff were rushing around, prepping me for surgery, I didn’t really know what was happening. They then told me they were rushing me down for an emergency C section, I thought they would just do as they did before and try and slow down the labour, but they said if they didn’t do the section right now that both I and my baby would die, I was terrified, I had never been in a situation like that before, and I was alone, we couldn’t wait for my partner Mark so I had to go down to surgery alone with all these terrifying thoughts going through my head with nobody there to hold my hand and reassure me things would be ok.

Our beautiful miracle, Cameron, was born weighing 2lbs14oz, I was told this was a good weight for a baby so premature and that he might be able to stay in Cavan and not travel to one of the neonatal units in Dublin. Over the next few hours however his condition dramatically deteriorated and they had to transfer him. Luckily they were able to transfer him immediately to Holles street hospital Dublin. It all happened so quick, within an hour and a half a whole team had arrived to take him up he was wheeled into me in his incubator before he set off, my poor defenceless little man had to go all the way to Dublin without me, I had to stay in Cavan after the section so couldn’t go with him, it was awful.

I was relieved when the following day I was told i was well enough to also be transferred up to Holles st to be close to Cameron. I Thought I was going to get to be near Cameron, I had never been in the neonatal unit in Holles street hospital and didn’t realise it wouldn’t be that way, I never thought I would be placed on a normal maternity ward with all the mothers with their healthy new born babies, it was awful, I felt like crying out that I had a new born baby too and he is going to be ok. I was woken during the night by a nurse who told me Cameron needed a blood transfusion immediately and they needed my signature for permission. I didn’t hesitate in signing the document, but didn’t sleep the rest of the night with the worry about my poor little baby. The following morning they gave him an ultrasound on his head where they discovered he had a grade 3 and 4 brain haemorrhage, that was shocking enough, but then we were told his chances of survival were bleak, to be honest everything after that was almost a blur, like a bad dream or I was watching somebody else’s life, this couldn’t be happening to us, not to MY baby. He was on high ventilation this machine that shook his tiny little body with every breath it was horrible to watch, I can still see it so clearly in my mind, he also had to be kept on morphine constantly, we can only imagine how much pain and trauma his poor little body went through .We didn’t think things could get any worse and then his lungs collapsed, we were told he would need an operation on his heart if he pulled through, the “if he pulled through” part of that sentence felt so doubtful, but we never gave up on Cameron, the doctors may have been preparing us for the worst but we couldn’t accept that, we knew we would get to take our little miracle home. 
I never gave up that hope, inside I felt as if I was dying, the pain and guilt I felt cannot be put into words, my heart hurt so much, it’s a mothers first instinct to protect her child, and I couldn’t do that, it was in the doctors hands, I felt so guilty that he wasn't safe inside my tummy. To be close to Cameron and because it is the best source of nutrition for a premature baby I made sure to express milk for him every 3 hours and sticking his labels on and putting them in his drawer in the freezer I knew one day he would get them. Over the next few weeks he gradually started to improve, it was such a relief when they took him off the shaky ventilator but he was still on high ventilation. Then I got the moment I missed out on after h was born, the most memorable and happy day I had in a long time, they let me hold him!!! I couldn’t believe it. It was the best feeling in the world to be able to hold his skin against mine, smell his baby smell and feel his tiny heartbeat, it was amazing, but it was also scary, he was sso tiny and so frail, I was worried I would hurt him, and I had to hold him very still and mark needed to hold his wires that were all attached to him, I was afraid to move, and yet I just didn’t want the moment to end. The next day we were told he was finally going to be given some of my expressed milk, I was delighted that something I did was going to help him, but that didn’t go according to plan, he developed Nec.

He got stronger and stronger when it came to go on cpap he was only on it for a few days; he is such a strong little boy. The doctors didn’t have a very promising prognosis for him though, they didn’t think he would ever be able to suck a bottle, or walk or talk or smile or walk, no parent want to hear that, but we never accepted any of that and we knew after all the hard work Cameron put in, he wasn’t going to stop there, he was going to prove them all wrong.


Amazingly Cameron is 19months old now and is the happiest smilest baby ever, he lights up a room with the smile the doctors never thought he would have, he not only can suck a bottle but he eats whatever you put on front of him, he never stays still and loves to play with me and his older brothers and sisters. We all have him spoiled, he is the light of our lives and I love watching him grow and develop, we have our little chats every day and is starting to take his 1st steps. Cameron truly is a miracle baby and I thank everyone involved for making this happen, but the main person to thank is Cameron himself, he was the one who put in all that hard work to stay with the Phipps family, and we appreciate that every day.
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Harry, Our little Lion, so brave and strong

Falling pregnant was not something myself and my partner had planned but after four positive pregnancy tests and confirmation from my GP is was very real that we were going to have a baby. I like most mothers would have assumed that I would have a normal pregnancy just like my own mother had with myself and my siblings. 
At 10 weeks I went to the hospital with my partner to have my assessment with the midwife. Very excited to get the ball rolling so we could get our date for the first scan. The midwife of course wanted to check my blood pressure while I was there and my urine. My blood pressure was quite high and there was protein in my urine. I had two of the three symptoms for Pre Pre-eclampsia. I was admitted for observation and they began me on treatment to lower my BP. I spent 6 days in hospital. I was advised from that point to see my GP every week for BP checks. After that my BP calmed down slightly until I reached 24 weeks!

All excited the morning of my 24 week scan (Friday), myself and Gerry went into Cavan General and waited in the waiting room with all the other mothers to be and all the other dads falling asleep in the chairs. We had decided that morning that we would find out the sex. Little did we know what was ahead of us. Lying on the bed watching the Dr scanning my ever growing tummy, asking loads of questions I saw a look of worry on he's face. He asked if he could scan me in another room as he wanted to use a different machine. He asked another Dr for her opinion and that's when they told us that there was no heartbeat and sadly the baby had died. Devastated! One of the Dr's ordered for me to be admitted so I could be “ sorted out” but thankfully the original Dr said he would scan me one last time. They brought me around to the ultra sound clinic where they found a heartbeat. We were so relieved. They still admitted me as the fluid around the baby seemed to be reduced and my BP was slightly high and a protein of +1 in my urine. They said that they would try and get me to 34 weeks and deliver me then. I just thought that I would be in for a few days and home again. Wrong!!!
Over the course of the weekend I could not relax, constantly worrying there was something wrong with the baby. Hearing that your baby had died and any movements you may have felt where probably bowel movements would put serious fear into you. I had the nurses wrecked from me constantly asking for them to put the Doppler on me so I could be assured that the baby’s heart was beating. By the Tuesday I started to relax slightly and was starting to feel better. I had a strong word with myself and decided that I would ask to go home. When my consultant came around he had a different idea. My BP was sky high and I now had a protein of +5 in my urine indicating that I had Toxemia and they were going to transfer me to Dublin where I could be monitored and be in the best place if the baby needed to be delivered. 
So off I went in the ambulance to the Coombe. When I arrived I was brought to high dependency and put straight on a tracer and was kept on it all night, my BP was monitored every 15 minutes. The next morning I was transferred to a ward where I thought I would be spending the next 10 weeks. Wrong again! Within half an hour of being brought to the ward I was sent for a scan, within half an hour of the scan I was rushed down for an emergency section and Harry entered the world, bum first! The blood flow had reversed causing more damage to me then baby but if they hadn't of got Harry out when they did, I would have lost my life and more than likely he's as well. 
So our NICU experience began. Harry was 1lb 5oz (610grams). We were told that the next 72 hours would be crucial and they couldn't give us any guarantee that Harry would survive. He was ventilated, he had no circulation to he's right leg and he's big toe was completely black. He had lines and wires everywhere, He had a cannula in he's head and on he's foot. I could not believe my eyes the first time I saw him. After a few days the circulation came back to he's leg but there was still the fear that he would lose he's big toe. At that stage we were so scared for he's life he's toe didn't seem like a big deal. The way I looked at it was if he kept he's life he could survive without a big toe on one foot. After a couple of weeks, as if overnight he's toe turned pink! 
Harry is now 15 weeks old. He spent 12 weeks and 2 days ventilated, he has a grade 2 bleed on he's brain which is currently resolving. He has PDA which is nearly closed. He survived NEC, Pneumonia and bronco spasm. He has had several blood transfusions. He's lungs have collapsed on more than one occasion and we have been told several times that he might not make it. Harry has and will continue to have Chronic Lung Disease of prematurity. The doctors have told us that babies as sick as Harry only come around once or twice a year. He is currently on CPAP and coping well with it. Our next mission is to get him onto the nasal prongs and then get him home. 
There has been nights we have been called to the hospital and been told that he isn't going to make it, that he is too weak. Harry has proved them all wrong. He is a true born fighter. We were told one night that he had a 50/50 chance of survival that it just depended on whether his lungs collapsed again or not. Instead of breaking down like I wanted to, I thought 50% of survival is a hell of a lot more then what some babies get and I said to myself “ He'll do it, he'll get through it” Within a couple of hours there were signs of improvement. Keeping some sort of a positive attitude really helps. Cry and scream all you like at home, but when you are in with your baby, laugh, talk, try and be happy and positive because I believe they can feel the vibes from you.
Harry's journey isn't over yet we still have a few weeks to go in hospital but I can’t wait to share it with you all. 
I am very lucky to be able to say “ This story is to be continued” x

Double the joy

By Georgina Byrne

In April 2007 at 32 weeks pregnant, we had just come home from a few weeks of life on the road with Westlife - tour bus, the works, and not so comfortable whilst pregnant with twins. I happily arrived back to put my feet up and prepare for the exciting arrival of ourprecious baby boys, thinking we had at least a couple of weeks!!!

We went to visit my husband Nicky's parents' home on the Wednesday where they presented us with two adorable Mamas and Papas carrycots. We were very excited late that night when we placed the carrycots in the twins' room with my scan photos in each one imagining how things would be on their arrival. I do also clearly remember going to bed that night thinking perhaps something was about to begin a wee bit too early. That next morning, Thursday the 19th, we dashed into Holles Street hospital where I later discovered I was going into premature labour. The following morning, very early on a Friday they arrived by emergency Caesarean section. This is when we were introduced to the world of precious premature babies.

While we were very grateful and ecstatic that we had two healthy and perfectly well babies, we were at the same time filled with worry and concern for our new tiny babies. Later on that night, a little weary and upset, we were brought up to the ICU ward, and first met our beautiful but ever so small babies, one weighed 2lb 13oz and other weighed 3lb 10oz. We were able to have kangaroo care with our babies and treasure the early moments.

We were greeted by the amazing and helpful ICU nurses. It was heartbreaking when it was time to put our babies back in their little incubators and leave them for the night, when for 7 months of pregnancy they had been with me all the time. I could hear other mothers together with their babies through the corridors. I quickly got into a routine and looked forward to every visit and feed. There were times when it was very hard like when you saw your babies crying or looking distressed. Similarly, when you saw them pulling out their feeding tubes. This was very worrying, as you desperately wanted them to get enough of a feed, in order to gain sufficient weight.

The nurses kept in close contact with us to ensure we were there for feeds, nappy changes, cuddles and baths and I still felt close to the babies as I was in the hospital. When my stay in hospital was up and it was time to go home again we found this devastating when filled with so much emotions and I still with pregnancy hormones going crazy!!! Being part from each other was so difficult, I felt guilty every time I thought of them all alone in hospital in their little incubators. Through the pregnancy they were in the womb all cosy together and now I could not even cuddle them or hold them.

It's hard to explain now when it seems such a short space of time but at the moment it's hard to contemplate leaving your new born babies to one side never mind leaving them in hospital. We headed home not knowing how long it would be before they came home. I always stress on an extremely positive note we were constantly reassured how well and healthy our two little men were thriving each step of the way. The amazing team at the ICU unit work tirelessly for so many premature babies, some of whom are more sick and unwell. They are genius in the work they carry out and we will be forever grateful that our two boys got this amazing start in life.

I support Irish Premature Babies because of the valuable information they provide for parents when we take our little ones home. Like all new parents, we have a whole new set of queries, worries and so on. The extra information that applies to premature babies is now readily available to us and is extremely helpful and necessary. Sometimes we have just small questions about premature babies that we can't run by our friends with full term babies, or even sometimes local health centres and GPs. Using www.irishprematurebabies.com is a very effective way of exchanging information about premature babies, along with supporting and helping to fundraise for the NICU’s and SCBU’s around Ireland.

Craig’s Story

Craig was born on St. Stephens Day 2007 @31 wks by emergency CS, due date 28 Feb. 2008. He was 3 lb 10 ozs which was a good weight for a premmie baby which was something to cling on to over the next couple of weeks. Just after the birth it seemed that Craig was in ICU and holding his own but it was over the next few days that things started to unravel for him. He began to have a lot of apnoeas, then diagnosed with necrotising enter colitis which was a major problem at the time but it was diagnosed very early which made a big difference, but for the 48 hrs it was a major scare and shock that we had to get our heads around. After a few weeks, much earlier than we anticipated, Craig was out of ICU and into SCUBU which was a very positive step. When doing the routine check on Prem babies for detached retinas, Craig was found to have a left sided only congenital catheract, apparently very unusual and that surgery was the only option as soon as he reached full term, but in the meantime, his eye had to be shielded resulting in patching most of the time. Also, this eye was much smaller than the other, and there was no way of knowing what health the eye would be in, or even if the surgery could be done and would it be successful.

From all our daily frantic phone calls to ICU & SCUBU till we got into visit, our conversations consisted of Did Craig’s bowel move? & did he have any apnoeas? At long last we got a call one day to say that Craig was ok to go home, surprised but very delighted and panicking we got everything ready. Our delight was not long lived as Craig wasn’t home too weeks when his apnoeas got much worse, resulting in admission to Crumlin Hosp. which was meant to be for 24hrs for monitoring but resulted in a few weeks stay. It took a couple of hours for him to have another one there, but when he did, it was in a continuous series of apnoeas resulting in a very turbulent couple of hours. We learnt very early with Craig that our instincts were right and to trust them, if we felt there was something wrong to go look for help and shout out if needed. He went through a series of tests but no real reason was found for his state, a blood transfusion was also needed at this stage. A decision then had to be made whether Craig was fit for his eye surgery or not, but it was a necessity and to be completed as soon as possible, so it was scheduled as an inpatient surgery for the removal of the catheract and sizing of a contact lens. If anybody finds it difficult to insert a contact or remove a contact lens in their own eyes then multiply this by 1 million to do this to their baby’s eye while he is screaming and this was done every 3 days leaving you to question whether it’s worth it or not for the little guy.

Craig’s health would improve for a few weeks and then suddenly deteriorate without any warning, sometimes in the space of a half an hour things would go horrible wrong for him. We then had added problems with his lenses and cornea abrasions, measurements and assessments all had to be done under anaesthetic which meant assessment and trying to fit Craig in between chest infections and courses of steroids- which proved very difficult.

There were also queries over our little babies hearing whether he had any hearing in his left ear, which seems to be ok now, personally we believe that it had a lot to do with the cranial sacral therapy that Craig had with a brilliant lady.

Epilepsy also was raised at one stage this was challenged by ourselves, after spending most of his little life with him we assumed we would have noticed this but the feelings off having to deal with another problem was horrendous, luckily enough our thoughts on the matter were right and Craig was cleared from any form of epilepsy.

One of Craig’s elective surgeries was the insertion of a lens into his eye which thankfully was a success, no more contact lenses until he is able to decide himself, ohh and pay for them himself as well! Now we just have to get him to leave on his patch and glasses every day – not as easy as it sounds but at least he’s getting to the age you can bribe him!

Unfortunately things didn’t keep going well for Craig apnoeas started to reoccur resulting in numerous admissions to Crumlin and Tallght with tests after tests with re-tests as the first ones failed. All the problems in under the sun have come up at one time or another with pneumonia, unexplained blood in his urine, crystals in his urine, blood clotting factors that didn’t conform to the norm & the list is endless.

Craig seems to improve during the summer months and then has bad Christmases’, his parties have all had to be cancelled so far but may be this year we might get to celebrate his birthday on the day, may be he’s trying to tell us to spend half the year abroad- wishful thinking on my part. .

Craig now looks for his aloe vera juice every morning which he takes no problem, one for his bowel and the other to keep any asthma under control. We have him off a lot of his meds now, hopefully this will become a permanent thing in the future. We have fought to be heard & to get help to try and get us all trough the tough times but there were far too many to put them all into this article. I think that when times get really bad you then start to think was there something that as a Mother I could have done differently in the pregnancy that would have prevented any of this, from the beginning to the end you start to analyse the whole thing .From one minute of coping well and holding it all together, to being a wreck but nobody really understands what’s in your head, they try too but it’s not the same.

Family and friends helped and gave support but mostly that was from a distance but we were very grateful for any help especially as we had another 3 yr old boy that had to be looked after both in a physical capacity and having the trauma of a new baby brother who wasn’t in the house but still was getting so much attention, had to be dealt with. The general consensuses from all the helpers they would do anything and loved Craig but never ask them to mind him as they were too scared!!!!!! Which leads to the question what do we do? We were petrified but had no choice thrown in at the deep end, with some info and lectures from the staff in the Coombe and Crumlin & the after care group from the Coombe which we never got to as Craig was too sick, but that was it – time to go it alone. We are lucky we have got this far and have tried to keep family life as balanced as possible – which can be very difficult at times but all you can do is try.

Presently Craig is doing ok, he fell in love with Minnie Mouse in Euro Disney during the summer, he is the most affectionate little guy 
that gives brilliant hugs and kisses. From being a baby that was institutionalised, didn’t want cuddles and wouldn’t take a bottle unless he was in the same spot and no one else in the room, he has totally changed into a little rascal that definitely can go into the terrible two syndrome when the humour takes him. Craig knows that thermometers are really phones and that stetascope’s are for tickling people, maybe he’s going to take an interest in the medical profession but in the meantime when these things are missing on the wards there normally in Craig’s room being played with. He is a determined little man that can fight his corner. And he has been a fighter since the minute he was born.

 The nurses in the Coombe ICU used to say that every day “Craig made liars out of them” by doingmuch better every day than expected, hopefully this is the way things are going to go for Craig and in the rest of his life that he will exceed all expectations and keep fighting for whatever he wants.

We would like to thank all those involved in any aspect of Craig’s care.

Caoimhe- My Miracle

Born: 21st Sep 2008
Gestation: 25 + 3 wks
Weight: 1lb 4oz / 570g

I went for a routine 24wk check up with my GP. She took my blood pressure on my right arm...then the left arm...then the right arm again. My blood pressure was off the scale 210/110...and there was also seriously high levels of protein in my urine. 

I was referred straight to hospital where I was taken to the high dependency unit where a team of people were waiting for me. I was plonked onto a bed & everyone in the room went frantic...taking my clothes off, putting loads of different IV lines into both my arms & wrists, strapping a foetal trace machine to my tummy, connecting a BP & heart rate monitor & catheter bag to me & in the midst of all that a consultant obstetrician was trying to do a scan on my bump. Everyone kept asking, had I a headache, blurred vision, spots in front of my eyes, pain in my chest....but I felt OK apart from the shock that was quickly setting in due to all the commotion!!

Once, they had me sorted, they all stood in the room starring with bated breath at the BP monitor screen, it was automatically checking my BP every 8mins. One of the midwives started to explain what was going on, she said I had severe pre-eclampsia & that if I didn't start to respond to all the drugs I was hooked up to they'd have no choice but to deliver the baby as my life was in danger. I was stunned, couldn't believe what was happening, however, after bout 20mins the drugs started to kick in & the BP slowly started to come down, there were literally sighs of relief all round the room. A midwife sat by the bed with me all night, it was just the most surreal situation I've ever found myself in. One of the Paediatricians came over from the unit during that night, as the BP was still abnormally high and they were still debating whether to deliver or not, she explained that if the baby was delivered at 24wks, it wouldn't be good. She said there would only be a 20% chance of survival of the first 48hrs. 

Anyway, to cut an even longer story short, they had hoped to keep me there to as close to 30 wks as possible but I only managed another wk, the longest week in the history of my 29 years. I remember one of the nurses explaining that they couldn't understand how I hadn't had a stroke or an eclamptic fit or at least passed out, they couldn't understand how I was still conscious when I arrived with BP that high & hence all the panic! They were taking blood for observation every 6hrs and eventually they said that my liver, kidneys & blood were being affected, the PET had developed into something called HELLP Syndrome. So on Sun 21st of Sep '08 at 12.15 my tiny warrior Caoimhe was delivered at 25+3 wks by caesarean section & weighed 570g (1lb 4oz). She was resuscitated by the paediatric doctors in the theatre, put into a mobile incubator & whisked off to the unit. They stopped briefly on the way out so I could see her from the operating table, all I could see was the tiniest face & yellow hat. 
I didn't get to see her for 3 days (apart from a photo on my husbands mobile which made her look gigantic but I didn't realise that until I saw her for real) I'll never forget it, a nurse wheeled me over to the NICU. When I saw the tiny creature that was my baby I nearly got sick. I felt like I was actually going to vomit. My whole body started to tremble. Then I suddenly felt guilty & confused for feeling like that. She was on a ventilator & covered from top to toe with wires & tubes & plaster, she also had a black eye mask on as she was under a phototherapy light. I can't describe what she looked like, I just remember thinking there is no way that 'this' is going to survive, I couldn't even comprehend that 'it' was a baby, she looked like this test tube alien toy that my nephew had. She was completely see thru, wrinkly, hairy & bruised looking, her skin hanging on tiny little stick bones, really it wasn't pleasant. I left after about 5mins I just couldn't take it. From then on every time I took a breath to speak, all I could do was cry and that continued for the horrendous wks that followed while I felt I was just waiting for the bad news to come. 

She had one problem after the other. We'd got a prem book & I swear she had almost every problem in it. She had respiratory distress syndrome & was having one brady cardia after the other, her electrolytes were all over the place & she was just constantly de-sating. She was ventilated for 4 weeks & ended up with chronic lung disease, she went up to 90% oxygen on a high frequency ventilator at which point the paediatric consultant sat down with us and explained the only way to go was a course of steroids (which they don't like doing but as he said 'the machine only goes to 100% and then we're all out of resources') So she had a 10 day course of steroids. She also has a PDA that closed and re-opened twice & a PFO, so many blood transfusions that I stopped counting & several suspected infections where her feeds were stopped & she was treated with antibiotics, so she was very slow to gain any kind of weight. Then to make matters worse she was put on a type of diuretic to keep her system flushed out as she was retaining fluid that was putting pressure on her heart & lungs but it also prevented her from gaining weight. She then went onto CPAP & spent 8 weeks on it until she went onto prongs for about 3 weeks then she finally came off oxygen on St.Stephens day, it was fantastic to see her face at last with nothing stuck to it. The next challenge was getting her to take the bottle to feed, she'd de-sat something awful & go a blue/grey colour in the face, scary stuff. We eventually took her home on Jan 6th '09 (Little Christmas Day) weighing 7lb 2, after 80 days in the NICU & 27 days in the SCBU. 107 days in all of which I felt every nano-second!

She's 2 next month & doing really well. She still very petite has some small problems & is slightly delayed developmentally but nothing major thank god. Not a single day goes by that I don’t remember the hours staring like a zombie, bewildered & lost into the incubator & thinking to myself ‘I’m hoping for a miracle here’ & that’s what got me through it …Hope! Hope was all I had and against all odds our little miracle made it home. We'll be eternally grateful to the doctors & nurses for stealing her back from God for us. They are truly gifted & amazing people.

Kathleens Journey

Kathleen arrived 8 weeks early in April 2004. She was my fourth pregnancy but because she was in a breech position I wasn't aware that the pains I was getting were actually labour pains. I had even been to the GP that morning and he had sent me off with a prescription for Imodium tablets (I don't go to him anymore)! My waters broke at home at 12 am and my husband drove me to the hospital where they got me up and into the labour ward. Kathleen was already on her way out and I remember the midwife seeming to be pushing her back in. I later found out that if the head is born too quickly when breech it shocks the baby so she was doing the right thing.
Kathleen was born within ten minutes, no crying, lots of activity from doctors in the room. She was brought over to me to kiss wrapped in a blanket, and then taken to the SBCU. She had respiratory distress and had to be ventilated. At this stage I felt she was safe and was going to be alright. She looked beautiful and weighed 5lb 6oz which was good. While I recovered on the ward Kathleen was quietly baptised without either myself or my husband present and an ambulance was sent down from Holles Street to collect her. The next day we made our way up to Holles Street and saw how sick our little girl really was. The ventilator was doing most of her breathing because a lung had collapsed. She was on a cocktail of antibiotics and she was described as being septic. Her neo-natal paediatrician told us she was a very sick baby. The nursing care she received there was incredible. On her fourth day she had an ultrasound scan on her brain and they found she had suffered a grade III IVH (brain hemorrhage). There was a cystic hole on the surface of her brain so damage had been done and we were warned she could have brain damage. Four days later they did another scan and found that the bleed had stopped. Things started to look up. We were able to hold her and try to bottle feed although she didn't have a sucking reflex. It still felt good to try. We put clothes on her after two weeks and she had her drugs reduced so that she was more awake.

After two and a half weeks she was transferred back to our local hospital but when we went in to see her on arrival we found she was back on all kinds of machinery and we were ushered out of the room. A doctor explained she had started to fit, and that her head circumference was growing at too fast a rate. The doctor in Holles street had mentioned that her head was growing faster than normal growth and said she could be starting to develop hydrocephalus because of the brain bleed, but had played down its seriousness. She continued to fit all night so the next day she was sent back up to Dublin this time to Temple Street. I followed up and found her on the HDU with a lovely bunch of nurses. She was there for five weeks and had her first shunt operation at five and a half weeks old. My worst moment was being talked to by the surgeon who was to do the operation. He was very negative and made three suggestions: 1 - that she have a shunt, 2 - that they insert a tube to drain the excess fluid and keep repeating, or 3 - that they do nothing at all to her and let nature take its course. This really upset me because it showed the seriousness of her condition but there was no way I would have considered such an option. So the shunt went in and we had to trust that this man would do his best for her. All went well.

Kathleen was transferred back to our local hospital at seven weeks and came home to us at eight weeks – on her due date! She has hydrocephalus, mild cerebral palsy, mild epilepsy and hearing loss in one ear. She is now six years old and goes to a mainstream school (with SNA support and resource hours) and loves it. She is our little miracle, and as one of her doctors said recently "God is good".

Leo’s Story

My husband and I knew the odds were stacked against us when I announced I was pregnant. We had two children already, both premature births and by emergency section, and a miscarriage the year beforehand. I have a rare condition – a double uterus and double cervix which is more likely to cause miscarriage/premature birth. I also have an underactive thyroid gland which again, can have an adverse effect on pregnancy/getting pregnant. Presumed we were through the worst when we got to the first twelve weeks without a hitch. In the thirteenth week, the dreaded blood appeared and a trip to the Emergency room ensued. Thankfully, a scan showed a heartbeat but the doctor informed me my cervix was open and any amount of bed rest would not divert a miscarriage. I crossed my legs, drove home and took to the bed for a whole week.

Ten days later, it was my first “official” visit and we attended not knowing what the outcome was. To our utter delight, there was a growing baby, with a very strong heartbeat and the cervix had closed.

At around eighteen weeks, I began to feel unwell, and discovered my blood pressure was on the rise. My bloods also showed “abnormalities” and the doctors feared I had developed the condition Lupus. A rash appeared all over my body and I found it hard to walk. I was in and out of the Endocrine Clinic on many occasions – told to rest to keep the blood pressure low and my bloods were sent to England for a full auto immune screening. These regular hospital visits, blood tests and attending specialists became the norm over the next few weeks, I was holding down a demanding job and taking care of two children. One Sunday morning, at 28 weeks gestation, I woke up with sharp pains and bleeding.

I was admitted to the Hospital and given the steroid injections. They told me there was also protein in the urine so I presumed I had a kidney infection. All day I kept getting pain on and off (obviously in labour but did not know). I finally mentioned it to a midwife at 9.30pm that evening. She then put me on a monitor and confirmed I was in labour and was 5cm dilated! The rest was a blur but within the hour I was taken down for an emergency section. My waters broke on the way! The baby arrived and was taken to the NICU. He weighted 1.25kg. My husband returned to me some hours later with a picture of him covered in tubes and I vowed I would not sleep until I had seen him. I spent the next few hours vomiting as I was allergic to the anaesthetic they give me.

Leo spent the next 37 days in the NICU and surprisingly, returned home one month before his due date weighing 4lb 6oz! He had all the “usual” premature problems - heart value not closing (PDA), ventilation/CPAPand BPAP and recurrent infections. He also underwent three blood transfusions. I finally thought we could all relax and settle down but he continued to have apnoeas and monitors going off all hours at night and day and I longed for the security of the NICU at these times.

What also began was the endless hospital visits. I had to attend a rheumatologist and endocrinologist on and off for the next year and a half but thankfully I am fine now. Leo had endless consultant visits, physiotherapy, dietician, hearing and eye appointments as well as a brain scan as they thought he may have epilepsy. Thankfully, he is a beautiful, boisterous, happy, healthy and highly intelligent three year old. He still attends the eye clinic in Rotunda and is a little short sighted. He also is having some behavioural problems which his baby nurse is keeping on eye on.

I especially would like to thank all of the staff in the Rotunda Hospital – particularly the dedicated team who work tirelessly in the NICU and my very good lifelong friends who got me through these hard times!

Amelia Faith

Following a pregnancy that from week 13 did not look likely to continue due to haemorrhaging, Amelia Faith decided on day 7 of week 25 to start the ball rolling and following an abrupted placenta and emergency c-section our 1lb 12 oz princess arrived in the world. 9 minutes after her arrival the medical team succeeded in reviving her & thus begins our epic journey through the NICU in Dublin's Rotunda Hospital.

4 weeks on a ventilator, several infections, a PDA, Chronic Lung Disease, several resuscitation attempts, skin that literally fell off her bones and many nights spent at her incubator praying for a miracle, Amelia was moved onto a bi-pap machine. Unfortunately I never received steroids during my pregnancy so Amelias most pressing problem was her very immature lungs which required suctioning several times a day to maintain her airways. On one occasion the medical team worked on Amelia for over 2 hours trying to "bring her back" and stabalise her condition - all the while I stood speechless watching on through a glass window. I never fully understood the phrase struck dumb until that fateful night when we honestly thought we had lost our princess. For weeks Amelia was unable to tolerate EBM and on each occasion that it was introduced her bowels stopped working.

At week six Amelia was diagnosed with MRSA and was isolated for the remainder of her 12 week stay in a room by herself. Little did we know that this infectious disease would still be tormenting our family over 3 years on (but that's another story). Constant apnoea attacks, bradycardias, falling red blood cell counts marked a typical day in Amelia's life. In total she received 8 blood transfusions, had several Echocardiograms, CT Scans, Lumbar Punctures and Central Lines inserted in her tiny fragile body. Amelia had also developed a haemangioma on her left foot, the progression of which was uncertain but it was likely that she was going to lose some of her toes as this growth increased in size.

Week eight and Amelia progressed to CPAP but we were told to expect to be bringing her home on oxygen longterm as her lung disease was quite extensive. When Amelia finally started tolerating EBM she developed reflux but on the positive side she started spending a few minutes each day off CPAP. By week 10 Amelia was managing for several hours a day off CPAP & was transfered to a heated cot. She had clearly had enough of the feeding tube by now and "yanked" it out before my very eyes and that was the last time we ever saw that tube.

By week 12 Amelia weighed 5lbs, was breathing air unassisted & drinking 25mls of EBM. Christmas Eve 2006 our little princess came home.

The house was more sterile than an operating theatre for the next 12 months, Amelia was hooked up to an Apnoea Monitor that I threatened to leave on her till she reached 18, myself and Amelia's Dad were shadows of our former selves, our lives had been altered forever by the birth of our daughter & we would be eternally humbled by her courage and fighting spirit.

The months following our discharge from NICU were marked with hospital trips for specialist appointments, emergency trips to A & E when Amelia became non-responsive, 3 months of quarantine in our home protecting our daughter from the dreaded RSV, scrubbing our hands till they bled and trying to regain a semblance of normal life.

3 and a half years on our princess still bares the scars of her battle against the odds ....her little body has more needle marks than a pin cushion, she still has Chronic Lung Disease although at 3am when shes screaming at me from her bedroom I sometimes doubt this diagnosis, she has lost part of her baby toe on her left foot and is struggling to maintain another toe, she still throws up at will (a leftover from the reflux), she's gone from being diagnosed with Cerebral Palsy in 4 limbs to "most likely not having it now" although she has a very unique gait when running and seems to spend most of her time on her toes which suits her desire to be a ballerina when she grows up, she struggles with certain sounds when speaking, she continues to have MRSA in her throat which compromises any future need for hospitalisations and surgery and as she moves into the pre-school years we are discovering developmental/behavioural issues that need addressing but despite all of life's challenges Amelia has brought more love and joy to our lives than we could ever have imagined. She has surpassed both our and all the medical professions expectations.

Every milestone she reaches extends the distance between our family and the traumatic 3 months in NICU and every kiss and hug she gives us helps heal the scars that we are parents were left with.

Emma's journey

After years of TTC I was shocked when the pregnancy test result was positive. This brought a mixture of joy and fear as I am an insulin dependent diabetic and one of the things you are strongly advised against is unplanned pregnancy. I rang the hospital the next morning that looks after my diabetes and told them of my positive result. They said to pack a bag and they would ring me back. Ten minutes later a midwife from Holles Street called and said to make our way to the hospital. I stayed in hospital for a week while they stabilised my blood sugars.

The next 7 months consisted of weekly visits to the hospital, blood tests, scans etc which I didn’t mind as I knew it would be worth it. At 31 weeks my scan showed decreased blood flow between baby and placenta. I was taken in for 2 days and give steroid injections. At week 33 I started to feel generally unwell and very breathless which I assumed was part of the pregnancy. I spent the Monday in the day ward in Holles Street being monitored as fluid was starting to build in my hands and legs. I went back to my GP on Wed (2 days later) and my BP was really high and I hadn’t slept for 2 days because I couldn’t breathe when I lay down. I was sent to St Vincent’s on Thursday for CT scan and Heart Echo as an x-ray had showed fluid on my lungs. They were unsure as to whether it was a clot or pneumonia. I came back by ambulance from St Vincent’s on Friday at 2pm and was told very coldly that I was in chronic heart failure and pre-eclampsia had developed and that my baby would be born by C Section at 8pm. My heart was too week to pump the fluid from PET out of my body and I was drowning in my own fluids. I asked would I be alive to see my baby and they said they could not say but to think positively. This was my first low point as I lay on a bed surrounded by strangers for 6 hours not knowing if I would be alive to see my baby.

Emma was born at 8.13pm weighing 2.42kg and I remember her first cry so well. She was then taken off to ICU. I was in recovery and 2 hrs later I took a turn for the worst. I remember that horrible struggled to breathe. I had to be ventilated and moved to ICU in the Mater Hospital where I stayed for 6 days. I was unconscious for 3 and awake for the other 3. I remember lying in ICU still feeling my baby move inside as I thought. These were the worst days of my life as I had not yet seen my Emma. One midwife from Holles St took pictures of my DD and brought them over to the Mater Hospital to me. Her kindness I will always remember. I was finally released back to Holles St on 14th Feb (best Valentines Day present). I was in a wheelchair at that stage and could not hold my baby as I was too weak. I remember looking at this tiny little stranger feeling completely numb and detached from the whole situation. Her main issue was feeding as I had had the steroid injections for her lungs. We were both released from hospital 5 weeks after Emma was born. My husband had to go back to work at that stage as he had been off for the 5 weeks. I remember lying in bed the first few mornings after he went back to work praying my baby would not cry before my parents arrived as I did not have the energy to pick her up. There have been lots of tears, and sadness over the last 2 years but thankfully 2 years on I have now fully recovered and my little girl is perfect.

Evan's story

I was just over 29 weeks pregnant on my first baby. I left work on a Friday evening and went for dinner with my husband, and when we came home I was feeling very tired so decided to have an early night. At 2am I woke as my waters had broken, at the time Ididn't realise it was my waters that had broken as I had always assumed it would be more like a gush of water and this was more like a leaking. I rang the hospital and they advised me to come in, when I arrived they confirmed my waters had broken and baby would arrive over the next day or two so was given steroid injections for the baby's lungs. It was from here on in my mind went into overdrive asking would the baby survive and if it did would everything be ok, I did not know anyone who had a baby born this early and I had never really heard much about premature babies.

All day I had very mild crampy pains, not severe at all, and then all of a sudden around 9.50pm as the baby crowned pains got worse and then within 20-25 minutes, our little boy made his arrival into the world weighing just under 3lbs. Myself and my husband were very emotional as the neo-natal team rushed him away, we waited what seemed like hours to hear if he was ok, the staff really were amazing and really kept us calm throughout and were very positive at all times. We got the news that he was breathing but was hooked up to monitors and machines in his incubator which was to be his home for the next 6 weeks.

I got a shock the first time I saw him, so tiny and helpless looking, I will never forget the first time I got to hold him, filled with emotion as I looked into his little face, it was an amazing feeling to finally get to hold my little boy. The day I left the hospital to go home without him was so upsetting and this was not how it was supposed to be. It was so hard leaving your baby, and your arms empty, all we had was the latest photo we had taken of him.It's very hard to express my feelings during this time to others as those weeks spent in the neo-natal nursery are strange ones, our baby and how he was doing became our priority so all those feelings I had were suppressed so that I could just focus all my energy on the baby.

After 6 weeks that day finally came when we were told we could take him home. I was filled with dread and excitement at this point, we had been waiting for this day but now so many "what if's" were running through my head. We are blessed to have our little boy who is doing so well and is now a happy healthy 2 year old who we love more than anything.

From beginning to present day: our journey of Strep B Septicaemia

A November 2008 morning our little girl arrived into this world, but she didn’t move or cry so her midwife brought her over to check her, they got an incubator and put her in it to help her breathe but after a few minutes she started to grunt and then they knew something was wrong and then I got a temp of 39.5 deg and they knew straight away it was Group B Strep, I had never heard of it before.

Things went from bad to worse and she was very poorly and the doctors weren’t sure if she would make it. They rushed her up to ICU and I was left in the labour ward not knowing what was happening but I knew she was in good hands so just had to wait patiently.

The next day our consultant came around and explained all, he was brilliant and explained everything to us. She had to get lumber puncture, x-rays, blood tests, blood transfusions, MRI’s etc it was heartbreaking watching her going through something that could have being avoided if a simple swab was taking during pregnancy.

My little darling spent weeks in ICU and it was so hard, on day 5 she had fits and everything that could go wrong did, they prepared us for the worst but thankfully she is a fighter and here today to tell the tale that Saturday night I never cried so much. I only got to hold her on day 8 and progress was very slow.

I went into the hospital every morning & evening to see her and brought my expressed milk and would talk to her, that was hard you just didn’t know what to say but in time it did get easier. Looking back I can’t believe how strong I was but you just had to be 110% positive for her. Every little improvement was unbelievable as she was getting stronger and stronger. The consultant didn’t know what way things would turn out, telling us she might not walk or talk and we were told to keep a record of everything so when we had developmental checkups they could see when and if she reached them! When she finally came home after weeks she got home for a month of no contact with the outside world, that was very hard, only attending hospital appointments but things were improving on her first day home she smiled.

After numerous hospital appointments for heart, brain MRI, etc she was slowly improving, doctors could not believe how well she was doing considering. Strep B is an awful bacterium and we know too well, so a simple test that takes a minute can save a life so should be offered to every pregnant mother, I wouldn’t like anyone to go through was we went through. Friends of mine have asked for this test to be done and a lot of hospitals have said “don’t worry about it, rarely happens” so don’t let them tell you that, since our daughter was born I have heard of 3 Strep B related deaths in newborns, and two other babies left with serious complications.

Thankfully now a year on: she sat up at 5 mths, crawled at 7mths and walked at 11 mths so we are just very proud of her and she is so good, sleeps for Ireland. We don’t know what the future holds long-term, but hopefully she will be like any other child, you just have to remain totally positive, I have my good and bad days but thankfully she’s here and we are having great fun now she’s a toddler and doing loads of funny & naughty things.

I just hope that in the future there will be a vaccine (still being worked on) and people are made aware of Strep B as not all babies are as lucky as our child.

There is a website you can look at for more information
http://www.gbss.org.uk/downloads
A proud mom of one beautiful little girl.

Suzanne's journey with Adam

When I was 26 weeks pregnant I felt unwell, looked unwell and had continuous Braxton Hicks so I went to the doctor. She didn't like what she saw so she sent me to the hospital for a trace and scan. I went to hospital, waited for 5 hours eventually saw a doctor who felt my tummy said baby is very active, did an internal and said I wasn't dilated - that the reason I was uncomfortable was 'stretching pains' and sent me home. I put myself on bed rest because I was concerned. I was back in hospital 2 weeks later for my 28 week check and I had a scan first because at the anomaly scan they could not see the baby's face. The minute the sonographer turned on the machine I knew something was wrong, she brought me to a more advanced scanner, then brought in more doctors. My baby had stopped growing and blood flow to the placenta was greatly reduced. He was 2-3 weeks behind at this stage.

My consultant referred my case to a specialist consultant and told me that I would be in hospital until I delivered my baby. I was given steroid injections and was monitored continually and was counting kicks. They thought at every moment that I would be sectioned but my consultant really really wanted to hang on until I had my second steroid shot. They knew my baby was very small.12 hours after I had my second steroid shot my consultant wanted to scan me for half an hour to count the baby's movements, I will never forget it. It was 8am, only me and the consultant in that part of hospital and in 10 minutes my baby had only lethargically moved an arm so she rushed me out of there and started shouting for people to get me ready for theatre. I didn't even get a chance to phone my husband and tell him what was happening, I was so terrified I started to vomit everywhere.

Anyway got to theatre and they tried to find baby's heartbeat with a Doppler and couldn't, so had to section me before the spinal block worked. They didn't want to give me a general anesthetic as things were going to be touch and go with baby as it was. Theygot him out and to this day I don't know whether it was my imagination or not but I think that I heard a little kitten cry from him. He was whisked to NICU - I didn't get to see him until 36 hours later. He weighed in at 740 grams or 1lb 10oz. My husband showed me a picture in which he looked huge!!

When I saw him for the first time I felt sick, he did not look anything like a baby, more a rat or baby bird. He was covered in wires, bruises and dried blood, I couldn't even see his face.His first week was horrific, I spent every moment I wasn't with him waiting for the phone to ring and them to tell me that he was dead.

Adam was ventilated immediately and stayed on ventilation for a week, then he moved to CPAP, after 2 days on CPAP he got very sick with an infection and was put back on ventilation again. He spent about 2 weeks on a ventilator, 3 weeks on CPAP and 6 weeks on oxygen prongs. He had a couple of infections, 2 bleeds on the brain, he had 3 blood transfusions and had to be resuscitated twice and numerous bradycardias - all of which is very common for prem babies. A week before he was due he had double hernia surgery. Adam was in Galway hospital for 11 weeks and in Crumlin for 1 week.

A few months after he was born we discovered the reason for IUGR and reversed blood flow through the placenta. I was diagnosed with a blood clotting condition known as Factor V Leiden, which causes blood to clot more than it should, the placenta was a mass of clots and we were very very lucky to get Adam out when we did as he was being starved in there.

Adam is 3 now and is the smartest funniest little boy who lights up our lives! He suffers recurrent chest infections and steroids and inhalers are his constant companion and he is of slight build, but apart from the scars on his hands and feet you would never know the hardship my little miracle boy has been through.

Angela's experience of premature twins

I was just over 29 weeks, and as I was leaving work on a Friday afternoon my waters broke. I just assumed that I had an accident, that a baby must be lying on my bladder, until the waters kept flowing and flowing (I had always assumed that it would be painful when this happened). This was not the case. I had only attended one ante natal class, so I rang the hospital and they told me to come in.

About an hour after this I was admitted to The Rotunda emergency room and was tested and monitored. Indeed my waters had broken. At this stage I had no idea that I would give birth that evening, as I had no pain, just a little embarrassed that I was soaking wet. Just before 6pm, I went up to the ward to get a steroid injection and a general chat from the midwife on the ward. Husband was en route to hospital with change of clothes (nightdress from Penney’s across the road) before going home to get the suitcase that was packed ready to roll.

I started to get cramps at 7.15pm and had crowned by 8.00pm, and was soon en route to the delivery suite. When we met husband with suitcase, Twin 1 was born at 9.02 followed by Twin 2 at 9.13pm. Both were doing well. I got a quick glance at them before they went straight to NICU. I will never forget the fear that I felt when I realized that they were coming. I was fully convinced that I would have weeks of bed rest followed by a section. But the staff were amazing and kept me calm the whole way through. After the girls were sent to NICU, they kept us fully informed of their progress. My husband and I got to spend an hour together before I was sent back down to the ward, and this was spent ringing family to tell them all was OK, (although I don’t think they believed us).

When we went to see the girls it was 11am the following Morning and I was so emotional. To see them in the incubators, they were tiny and so helpless looking. I was afraid to touch them in case I hurt them and it took a few days to get over the shock of it all. But when we got to hold them it was amazing. To see these little eyes staring back at you. I have to say that from day one of the pregnancy, all the staff that we encountered were amazing, so supportive and helpful.

I had always hoped to breastfeed the twins and as the weeks passed, I was expressing like mad. The freezer was backing up with milk, awaiting their arrival home. 5 and 1/2 weeks later twin 2 came home. At this stage it was week 34 and they had not developed their suck but could take a bottle. A few days later twin 1 came home. How fantastic to have both of them home. But alas the breast feeding had eluded us. As my husband went back to work, I was spending most of the time feeding and it was taking up to an hour to feed each of them. Twin 2 had reflux and no sooner had she taken the bottle it was back up.

I was trying them on the boob every second feed to try to get them to feed, but to no avail. The hardest part of this was the guilt. Guilt that I could not feed them, that maybe I would not bond with them and that I would have to spend every waking hour sterilizing, pumping and feeding. Also, that my workload would be doubled. But I never looked at the advantages of EBM (Expressed Breast Milk):
1. Other people could give them bottles, to give me help.
2. The supply in the freezer could get used up.
3. They could get fortifier in the milk.
4. I would get really good at sterilizing.

Now it is so much easier. They are now 4 months old and now I can feed both at the same time. It has been a journey, a rollercoaster, with lots of ups and downs but I would take it over again without hesitation. When you have an experience like this with a premature baby, it makes you realize that you can’t take pregnancy for granted. We are all very privileged to have a happy, healthy bundle of joy to take home with us and I am just delighted to have two.

Lisa's journey

It was Thursday night when I got a positive pregnancy test, I just casually showed the hubby the proof and we just looked at each other half afraid to smile. We were afraid to feel joy and excitement because we had a pregnancy loss a few months earlier, and we not going to allow ourselves to get too excited or carried away for it to be all taken away.

Problems started a week later, and I experienced weeks of constant bleeding. It was hard to remain positive but each time I had a scan after a bleed, my heart softened when I saw a tiny heart flickering away. I don’t know why this little life was staying in when others did not. Around week 20, my bleeding settled down, and then my blood pressure went up. But at least I was spared the weekly trips to the emergency room where the staff were beginning to greet me like an old friend. At week 28, I had a very heavy bleed and was kept in, and given the steroids. It settled down and was allowed home .At week 30, the same thing happened and was admitted again. Only difference was I have having irregular pains. I was told that I was too early to be labour and as a first time mum I decided I was going to believe that and I was telling myself that things would settle down and I could go home like so many times before.

My delusion was broken when my waters broke after experiencing several hours of pains that we too early to be labour, when examined I was 4cm and there was no turning back now. I was very calm between contractions, yes you do get contractions with a premmie! I went off to the labour ward not knowing what to expect. During my day dreams when pregnant I had visions of how my labour would be, there was soft music, relaxation, well not all the details were worked out in my head but when the baby would be born, he would be given to me immediately and breastfeed and we would bond within seconds. Instead I had a room that was busier than Heuston station, people giving out to me for not pushing right, and conversations through legs in stirrups. After over 26 hours, yes some premmies take their time, himself who had, started the process of birthing off was having second thoughts and scrambled back up, but he had to come out and off we went to theatre for a section.

I got a little peek at the bundle and discovered “my girl” was actually a boy. He was taken off to the NICU to be stabilised and his dad went with him. I was brought back up to the ward and put into a room with three new mums and their babies. For the next couple of hours I listened to cries and lay wondering what my baby was doing. I had a photograph of him but I could not relate to him at all, I still felt pregnant and I sure looked it. That morning I was taken down to meet him. When I saw him first I burst into tears he was tiny, nothing like his photograph. He was red, hairy and tiny and was covered in wires, tubes, and sun shades. It was that first viewing that reality hit me and I knew this was not what I had envisaged and that my road into motherhood was going to have lots of bends.

I checked out of hospital early, I could not bear listening to other mums moaning about their crying babies, when my arms ached to just hold mine for a moment. A couple of times I overheard through the sound proof flowing curtains “her baby is downstairs it’s not well”. It was easier for me to separate from “normal” new mums and find solace with my own kind now.

The days turned into weeks and my second home became the NICU. It was so hard every night leaving your baby with your arms empty and your breasts full, all you had a the latest photograph of your sleeping baby, and the memories of the day flooding around your head while you scrutinised every word a doctor or nurse said to you and wonder if they told you everything. You wondered who was looking after your baby and did you know them and were you happy with their care. I was jealous that other people were looking after my baby more than me, what was my role? Other people fed him, washed him, held him, cared for him. I failed to carry him to safety and at times I felt I was failing him as his mother now. It’s hard to express these feelings to others because you become lost when you have your baby in the NICU and they become the priority so you suppress your feelings to stop them getting in the way and that allows you to focus on matters at hand.

After six weeks the day came when we were told one Saturday morning to take him home, so we rushed around the shops while himself laying waiting for his next journey. We managed to get everything in a few hours, at last the empty cot will be filled, the Moses basket will have sounds and smells and I am to at last become a mammy. Oh crap, I was filled with dread and excitement. A million what ifs ran though my head? The day we came home, my husband had to pop out to the shops and I remember looking into the basket and praying don’t wake up yet, not until the troops are back to help. It takes a while to believe in yourself, to realise that you are a good mother, to understand that your baby needs you more than anybody and to enjoy and cherish the journey into motherhood. With each passing day, the bond grows stronger and the love deeper and I realise how lucky I am to have been blessed with this special baby.

Miracles and Positivity!

When I first held my little daughter she fitted in that little space between the hollow in my neck and the top of my boobs. She was born 11 weeks early and weighed 950g (2lb 1oz) and believe it or not it was actually a relief that she was here and alive. The previous 5 weeks had been a terrible journey of worry and distress as we wondered how long we could keep her inside and whether she would be born safe and sound.
All the pregnancy joy and excitement was gone, replaced with scans every second day and tests and meetings with consultants and paediatricians, nobody could say what was wrong and why and what could be done except wait and pray. Every day was a bonus.
So we are very very lucky. Lucky that she stayed in the womb for 5 more weeks after it was thought she would be born at 24 weeks (with an estimated weight of about 1 lb), lucky I got the steroid injections that developed her lungs, lucky that she was able to take her first few breaths by herself, before being given some help to breathe. Most of all so so lucky that she has had none of the potential problems that were listed out to us many times during those horrible 5 long weeks.
In comparison to many Mums and Dads of premature babies our life in the NICU of the Eirnville hospital and SCBU of St. Finbarrs hospital in Cork were not very traumatic. The first few days were the worst, following an emergency c-section on a sunny Saturday morning I heard the beautiful cry when my little girl was born and caught a glimpse as she was wheeled past me to the NICU. In recovery my husband brought in some Polaroid pictures of a tiny little thing that barely looked like a baby, I wouldn’t get to see her till the next day. The first morning of waking up with no baby beside me and no baby inside was terrible, but a fantastic midwife and my wonderful mum got me up and moving and introduced me to my new best friend – the trusty Medela breast pump.
3 drops of precious milk later (took about half and hour to get that!) and I was wheeled up to see the little lady. Our beautiful tiny daughter did so well from the very start, breathing using CPAP straight away, tolerating feeds from day 2 – all be it a miniscule 1ml of EBM every hour! (or it could even have been 0.5ml – my memory is fuzzy on the details sometimes).

For the next 7 weeks I spent my time between hospital sitting by the incubator and home sitting by the breast pump. Again we were so lucky in that Roisin didn’t have any major scares. There were of course bad times, one on a Friday night myself and my husband decided we would try and go out for a meal and have a break and didn’t visit the hospital that night, when I rushed in the next morning I heard she had a bad night and they had to stop feeding her and she was not tolerating feeds, feeling guilty doesn’t even describe how I felt then. Or the time I had a big fight with the Paediatrician when she needed a blood transfusion and they wouldn’t let me donate! Over all she is so perfect and it is such a miracle that she has had no problems. It seems I have been more traumatised by the whole thing than her. I think it must be one of the most difficult things in the whole world to lose all control over the care of your newborn baby, to have to ask to touch her and wait to hold her, I don’t know if anyone who has not been through it could ever understand.

Eventually we found out that I had pre-eclampsia and that is what caused the problems, I was told that the chances of having it again very much less than 2% so got pregnant again in 2008. Unfortunately I was in that 2%, again though very luckily I had wonderful care and was advised to take aspirin from the beginning of the pregnancy. It was very tough going, at 29 weeks again I was almost begging the consultant to please deliver the baby, a crazy thought, and more than once I drove myself to the hospital in panic – giving myself high blood pressure! This time I got as far as 35 weeks and had a whopper 4lb 13oz baby boy, he spent 3 days in the SCBU and most wonderfully I got to bring him home from hospital with me.
Both of my babies are doing great now and while both my pregnancies have been very stressful and emotionally gruelling I feel so unbelievably blessed. I have been so lucky to have had the positive outcomes that I have had with two wonderful beautiful children that I couldn’t imagine being without.

My experience - the joy, sorrow, grief and heartbreak of having my babies

At 21, I discovered I was pregnant with my first baby. She was delivered at 33 weeks weighing 2lb 9 ozs. She was in hospital for 6 weeks. She is 8 now and getting her communion in May, oh how time has flown by. Little did I realise when I had my daughter thatspecial care units would become a familiar place for me and my husband. 

For us as a couple, the time we spent in the Coombe’s NICU will stay with us forever. 

Our son was born at 28 weeks weighing 1 lb 5 ozs. I thought I knew so much about prematurity, after all my daughter was also premature. How wrong I was. We called him Aaron. He was so small, much smaller than my daughter, half her weight. He was ventilated and doing very little for himself. He was requiring the highest level of support and 100% oxygen. He had several blood and platelet transfusions when I first saw him. The first thought in my head was fear. I think fear of everything. I was afraid he was in pain. I was afraid of all the pipes and tubes, one in his mouth and 3 from his bellybutton, I was afraid that he was going to die and I was so afraid to love him. I tried so hard to not care for him because I knew how sick he was. 

When Aaron was 5 days old I was discharged from the hospital. His consultant asked for a word with me. She explained briefly that Aaron’s left lung had collapsed and that he would require ventilation for a long time. She said he would have chronic lung disease too. I may have been told he had a terminal disease as I did not know what this really bad disease was.

Everyday I made the long trip to Dublin (we live in Laois). I sat beside Aaron’s incubator and time after time it was explained to me how sick he was. It was so hard. Everyday I thought he was going to die, everyday I cried and cried and willed for him to live. 

I suppose the one emotion that I clinged onto at this stage was fear. I was still so afraid he was going to die and I wished I did not love him so much. I cried when I was near him, I cried when I was away from him. I wanted him so much but I could not help him in any way, it was a hopeless situation. 

This scenario continued for a long time. His biggest problem was his lungs. He needed high frequency ventilation for a short period. Needing so much ventilation meant that he was mostly sedated. I rarely got to see him awake. He needed resuscitation on numerous occasions, it was just so scary. Aaron had 150 platelet transfusions and over 50 blood transfusions. He had so many marks from canulas and they had shaved most of his hair because access points were a problem. He had 2 central lines done in Crumlin and got infection after infection. He always needed antibiotics and he even had a lumbar puncture as they felt infections may have spread. 



After 11 long weeks he was to be extubated. I was so excited. I would hear him cry for the first time and he would be awake more often as he would not need sedation that he required when ventilated. I was told to go have a coffee and the extubation would bed one during the rounds. I returned and Aaron was on BiPAP. He was crying, he was so hoarse kind of like a little cat. I sat and cried again. After 11 long weeks of ups and downs I was listening to my baby crying. I was so happy. He had turned a corner and was breathing on his own. He had been infection free for nearly 2 weeks. I was just so happy. 

When I returned the next day he had been changed to CPAP as he cried all day with BiPAP. Another step forward, it was great. Next step was nasal prong oxygen and he would more than likely leave the hospital needing oxygen. Then I got to feed him for the first time. He struggled but after 2 or 3 attempts he seemed to be getting the hand of it. 

On Christmas day (14 weeks in NICU) he was transferred into a cot and we were given a cubicle. I could not believe that we had come near the end of our journey. All we needed now was to get the hang of bottles and we were on the home stretch. The light at the end of the tunnel. 
One year later I had my first and only term baby who was 6 pounds.

My fourth Baby, Amelia, was born very early at 25 weeks. She was 1 pound. Again it was a difficult time in the NICU but a very short one. 

I had an ultrasound at 8.20am. It was discovered that baby was in distress and her heart rate was very low. She was delivered at 8.50am. Within half an hour I was not pregnant. My mother, sister and husband rushed up. When nobody would tell me how the baby was I knew it was bad. I used all my strength to get out of bed and go up to the NICU to see her. She was a bad colour, really bruised around her head. I knew what this meant. She had a massive bleed on her brain. We awaited a cranial ultrasound to confirm our fears. Amelia had suffered 4 bleeds, 2 significant ones. She was doing nothing for herself. The doctors felt that it was best to let her go. We agreed and she died 5 hours and 26 minutes after her birth. I came home with her a short while later. 

I was very sad after Amelia’s death but I knew that I wanted another baby. 11 months later I was back in the Coombe. I had Jessica at 32 weeks after a bad bleed. She was a good weight for her gestation, 4 lb 3 ozs. She did not breathe after delivery and required resuscitation for what felt like hours. She was then ventilated but was in a good condition. An hour later she was on CPAP and doing really well. An hour after this she was breathing on her own. She spent two and a half weeks in SCBU. I was thrilled that we were coming home so soon. She had just began to take her feeds and was back to birth weight. 

For me, each experience in the NICU was very different. Each baby had its own battles and each one turned out differently. There 
were a lot of tears and definitely a lot of fears!!! It is scary when you have a sick baby. It is also important not to compare one baby to another. Like all humans they are so different. The staff are great; they try to help so much. Trust them; they know their jobs inside out. They care for the babies so well. They talk to them and even sing to them. They just treat them like normal babies. I learned over time to put my trust in them. If you are in any doubt, ask questions. Ask all the questions you need too. If you don’t understand, ask again. Do not leave the unit everyday wondering what something means, just ask! 




In memory of Aaron and Amelia.

Daniels Journey

"Mammy get up here quickly!”, a mischievous voice full of laughter calls down the stairs as I switch on the TV and finally get to sit for 5 minutes in the hectic day of any mother. As I round the staircase I am met with two skinny legs and a face dancing with delight singing some funky theme tune in nothing but a pull up and a Tomas the Tank vest. Instead of being cross because the child is causing more antics than actually getting the pj's on and getting to bed. I roar laughing as my heart strings tug again and am thankful for it all.......
At first I was told I would have difficulty getting pregnant and I suppose as such became more desperate to have a child.

So when I found out I was pregnant and had a scan at not even 12 weeks, I was in a state of delight and shock. I always wanted to be pregnant and to waddle, to have a huge bump, to have swollen ankles and even the constant wee’ing didn’t phase me. Morning sickness was horrible but it would be worth it in the end!! And once the initial sickness was over I had never felt healthier in my life. I swam, I went to Pilates, I ate the correct food and I tried to rest. But I never got to waddle, never got a bump and the only swollen ankles were from toxemia!! My blood pressure went through the roof, pre-eclampsia arrived and suddenly my dreams of the big pregnant belly were over. “We’re going to give you steroids to develop the babies lungs; every day inside is worth a week; it will be a section; we’ll have to do it within the the next two weeks” and so on the doctor's words swirled around me. The words and the fear. The end of my long awaited, much loved pregnancy was in sight, only coming sooner than we expected. I remember after seeing the consultant, going into my room and talking to Archangel Raphael (who is the angel of healing) and to my mother who had passed away and begging them to get the baby out no matter what. I recited an angelic prayer to Raphael over and over to quieten my fear of what was to come. The steroids were only in two days if even; the “every day in” wasn’t even 48 hours, and the “within two weeks for delivery” was within 24 hours! Toxemia, pre-eclampsia and a blockage in the placenta (something only realised afterwards) set the wheels in motion for my sons arrival @ 27 weeks with development of a 25.5 weeker and at 740grams!! Wheels which were to bring about the biggest change in our lives on so many levels.

The first things I remember on seeing my son was how hot I felt, (the heavy canary yellow robe wasn’t helping) how totally lonely and hopeless it all felt and how much I wanted to touch him. I thought he looked like a little alien with a mop of black hair. But fear grips you, and not ordinary fear but maternal fear that you have to protect this child, your child and you can’t, because you don’t know anything. I didn’t even know what had happened, why he came early, I was on so much medication at that point. You find yourself sneaking a peek at the other incubators to see if others look worse than yours, or how small the other babies are. Its like walking into a different planet, a bubble. Is funny to think that this bubble of fear, and sickness can be one full of hope and comfort and what ended up for me as unbreakable friendships. Every beep of a monitor, every ring of a bell becomes your preoccupation. Born so early it's fair to say my son had a list of complications, there were valves in the heart that were not closing; there was the big one for him, NEC (necrotizing enterocolitis) that was life threatening and the chronic lung disease. I never thought I would pray around the clock for my son to shit. But I did over and over and over. Because if he did, that would mean the NEC was gone from the bowel and this was his first big hurdle. Something so simple as a fart or a poo suddenly was life or death. This is the surreal world of prem-land!I remember the consultant coming to talk to me after a couple of days to explain how sick my child was. He used big words, in a very sterile fashion and didn’t have a ounce of positivity in him. He feared the worst, and if something didn’t change then our little boy wouldn’t last two weeks or could even go that day depending on which way things went. The sense of possible loss was overwhelming, but I am not only a stubborn and positive person. I am a great believer in angels and I was handing this one over to them. Before the doctor left, he asked did I have any questions and I told him that “my son was just that, MY SON and not only was he not to write him off yet but that just because he is small didn’t mean he wasn’t a fighter like his mother”.

Needless to say I am sure he left my room thinking I had been over medicated and didn’t have a proper grasp on the situation. But everyone handles their own crises differently. So I asked my guardian angel to help my son's guardian angel and to do whatever had to be done. Then I begged, I cried, I panicked and thanks to my dad I pulled myself together. “Ya need to keep the pecker up”, he would say with such heartfelt fear and worry for not only his grandson but his little girl who was very sick herself, even if she (I) didn’t realize it. The weeks in an NICU pass in an odd routine. At first it's all babble. You understand little of what is going on. And then you become part of it. For me the milking room became a sanctuary where mothers could cry, laugh and talk about how they were getting on. The ward became like a classroom of children and their parents. When one parent went for a break another would watch over that incubator with as much care an attention as if it was their own. Daniel would look out at me when I would sing to him, straight into my eye as if to say “Hiya mam, what's going on?” and I’d know he was a tough nut despite everything (to this day he says “Hi mam what's going on??”). One of the granddads (who has since passed away himself) would sit and read, sing or tell stories to his granddaughter. A little tot at 24 weeks in pink. I would close my eyes some days and listen to him or watch him through the incubator, tears pouring down my face at the scene. This elderly man, pouring his heart out to this little angel in pink. It is my most vivid and lovely memory of the unit and every time I see little Molly now I think of it.

And so I was inspired to get a book and do the same “Big Bear Little Bear” and thus there was a turning point for me and Dan. Everyday we would read him stories into the incubator and we noticed his reactions when he heard our voices. How his daddy’s song would soothe him if he was agitated (still works to this day) and mine would lull him to sleep again. And now he loves story time before bed and sings 24 x 7!! 3 years on and that book still brings an air of calm to him, it's quite amazing. Little by little they get a bit bigger, the problems are still there, but their breathing levels out, the first of the big hurdles is overcome eventually and another one takes its place. For me it was the waiting to hold him and kiss him was the biggest personal challenge. It was almost a month before I got to do it. And would you believe I can hardly remember it, so afraid I was going to harm him. Then there's the valve operation... the thought of which was freaking me out inside. But in the end nature and the angels sorted that out. The ventilators were taken off. The milestone, to finally see him, to see his face without tubing, without tape. A blur of activity and not a camera in sight!...And the monitors are still the comfort that everything is plodding along. Daily I like others would wait for news of any change big or small, how many milligrams of milk did he have, how were the lung scans looking?? and so on.

It became the most natural thing in the world to sit pumping milk with a total stranger, discussing how much you have pumped today or did little Johnny break wind or fart!! And all the time you are listening out for the alarms and monitors. And suddenly some 2+ months later I walked in one day and he wasn’t in his incubator. Absolute terror crossed me, I thought he was dead and no one told me. But thankfully no, he was getting better and was moving down to the next level of ward and out of intensive. They just forgot to call and let me know!! Moving from the NICU (intensive ward) to the next level down is an odd feeling. I missed the monitors, the serenity in many ways. Even though I was with all the same mams, its was very strange. And then there's the wing and I’m almost home and dry. I have at this point become obsessed with pounds of weight like the others, because its all about the weight. And slowly but surely he’s getting there and a sense of a departure is in sight, just a little hernia procedure, a couple of days recovery after that and all would be good for going home.....But I should have known that nothing in this little man's life was going to be that straight forward.

The next phase of his fight was going to be the biggest, not just for him but for me. It was this phase where I would be stripped of every last bit of dignity, where the maternal nature of a wild animal would kick in and for the 1st time on the rollercoaster I would think the game was over, he was going to be taken away at this last moment over something so simple it was insane. Our little man went from an NICU ward into a public ward, even though he was a private patient in a large children's hospital for his hernia operation. There were windows wide open, the hygiene was questionable and he was placed in a bed next to bin overflowing with dirty nappies. Children roaring with little or any attention during the night. Calls for assistance either ignored or responses delayed. I had walked into my idea of hell. I was out of my comfort zone of the NICU, where everything is pristine, the care is extraordinary and the nurses know your child inside and out. His hernia operation went without a hitch until he was brought back to the ward for his recovery. He was agitated, unsettled and in my view in extreme discomfort. We tried everything to settle him but to no avail, “maybe he needs more morphine for pain” was the final thought which I knew was the wrong thing. Suddenly I looked at him and said, “why is he lying flat, he needs to be slightly elevated to breath easier” and somewhere a light switched on and we elevated him and he seemed to settle. But at that point the damage was done, little did we know. Looking back it amazes me how at that time no nurse looked at his wound or checked his temperature during his discomfort. Eventually I gave into requests and went home in the wee hours in the morning to change clothes once he was sleeping and seemed settled. But how sorry I was when I arrived at 7am the next morning. I walked in expecting to see him chirpy after a good nights sleep to be welcomed by the sickest looking infant I had ever seen. His eyes were like two hollows, his skin grey and he was limp in the cot....Suddenly the positive, obliging friendly mother of the NICU turned into the most demanding, angry person on the planet. And by God did I cause the scene of scenes to get to the bottom of what happened. In the end it turned out all his agitation and restlessness the previous evening had ruptured the wound and he was now going to have to go through it all again. We had come through 3 months of hard slog, he had fought every step of the way and now he lay limp in front of me because someone hadn’t read a chart or taken the time to check. Frustration, anger and fear came to head and I officially lost the plot. I wanted him back in the NICU after his operation. Back to where people knew him and where we knew the people; back to his home or the only home he knew. And eventually he was transported back after much ranting and raving by his looney mother. Back to the comforting sound of the monitors, the bleeps, the nurses, the place we had called home for so long. A couple of days and he would be out, the light at the end of the tunnel had been overshadowed by the big hospital but now was clearly insight.

Settled back in his little room in the Rotunda, it all felt like it was coming to an end. We could begin to prepare for his homecoming. At that point I just wanted him home. I had enough of the travelling in and out. All the others had gone and we were still waiting now almost 4 months, living, eating and breathing hospitals. The big day arrived, we put a sign up welcoming him home, had all the bits we needed and packed up all his belongings. As I placed him in his car seat something made be stop and before I could look up I knew today was not going to be the day. The monitors that has been my constant companion over the months were bleeping the wrong way and the ward nurse was standing at the door. So out he came and back into the cot for a few more days.

The little minx is still giving me the run around 4 years later! When Dan did come home there was no fanfare. I had taken down the sign. Although all this drama was part of his journey in this mad world, I had been so gutted he didn’t come out the first time I didn’t want to risk it. Even though I knew he wasn’t fully ready before, it still upsets you when it doesn’t happen the way you want it to. But then nothing in his life happened the way we wanted it to up until then. As a parent of a prem baby, going through all the drama of an NICU, you wish for them to be home. And then they come home, you finally have them all to yourself and you loose the plot!! You're constantly checking them, you're knackered tired from no sleep (as with all babies), and become a cleaning freak with the most hygienic house on the road. And this is oddly the normal bit. Now we as prem parents become like all other new parents. Our baby enters our home, our world and turns everything on its head. Sleep goes out the window, you spend hours just looking at them, your social life turns to crap and your days are spent cleaning up poo and feeding, cleaning up poo and feeding.

Normality is a wonderful thing really. I am almost 4 years on from the highs and lows of an NICU. And the past 4 years have been the most rewarding, challenging, happiest and saddest of my life. I live, eat and breathe my little boy, he is my entire universe and my best aul pal. Yes he goes in the bold corner, and would drive me to chocolate if not over the edge with his stubbornness daily and from that edge of reason he will topple me over with laughter until we come full circle again. All children are not the same, whether they are premature or not. The dramatic entrance onto the stage that will be their life, does however make a prem stand out a little more form the crowd. Their families will always look at them differently, with bewilderment and how they have fought against the odds. They are little angels that we as parents have been blessed with. Someone up there must have thought we could handle it, must have thought that these little ones needed someone extra special to care for them. Or maybe these little miracles thought we as parents needed a shake up, needed to see miracles in a different light. In 4 years I have seen things that would make the hardest person break down and cry and turn the softest heart into a powerhouse of strength to pull it all together. I wouldn’t change one thing about it. I made wonderful friends in the NICU, I have a happy little boy and have found that chocolate can cure all forms of exhaustion!

The Irish are living all over the world. We have a few Irish mums who have kindly offered to write their experience of having a premature baby in NICU's in Australia and Spain.

I am mum to a little boy Rónán Born on October 11th 2012. My wonderful son came into the world at 35 weeks gestation. All scans leading to this had been normal but was told at 20 weeks i had a slightly low lying placenta which, i was told would more than likely move by birth. I had a normal pregnancy up until 27 weeks when i had a bleed at home in the middle of the night. It was one of the scariest moments in my life. I thought i was losing my baby so my husband and i rushed to the cumh in Cork.

Thankfully my waters hadn't broken and the bleed didn't affect the baby. I was kept in for a week and given steroids for the babes lungs incase i had to deliver. i was left home at 28 weeks but after another two weeks had another significant bleed once again at 30 weeks i was rushed into hospital. All i could think of was what if i have my baby now will he be ok? Will he be sick. I had so many terrifying ideas it was hard to keep it together. Again i was kept in and left home at 31 weeks. Less than a week later a third bleed and back in hospital where i was told i would remain until i gave birth.
 
At this time i was told i had a grade four placenta previa which was causing all of my bleeds. For my safety and the baby i remained in hospital.From 32 weeks until 35 weeks i had 7 more bleeds and was monitored closely. Each time so afraid i would be rushed to theatre. The evening i gave birth seems like a blur. I had had a bleed but also ended up going into preterm labour. I was told it was better this way as if i had a massive bleed it would have been more dangerous for the baby and me. I had a c section at 11.48 pm and our beautiful baby boy was born 5lb 3oz.
 
I was glad i was awake and My husband got to hold him before they took him to the neonatal unit. I was so upset leaving the theatre without my baby in my arms. Even though i knew he was close by my heart ached. Something I'm sure you all can relate too. Our little boy spent 18 days in the nicu a feeding tube for the first week, and was treated for jaundice. Each day leaving was heartbreaking but both my husband and i looked forward to the day we would take him home. Just before halloween we got to take him home and he got to wear the outfit we bought him!! he is now 5 months 3 months and three weeks corrected and he is bringing so much joy to our lives.Having a premature baby isn't easy but those of us that are blessed with these miracles are truly strong x

Jac and Kayden - premature twins born in Spain

I am Irish and have been living in Spain for nine years. As part of our private health care, we had a scan at 7 weeks and discovered I was pregnant with Identical twins who shared a placenta but had an amniotic sac each. They explained that because of this shared placenta it was a high risk pregnancy. I read all I could to prepare myself for what could go wrong, the biggest worriesafter miscarriage were TTTS (Twin to twin transfusion syndrome) and premature birth. The private hospitals in Spain are not well equipped for premature birth, and if they were born before 34 weeks I would be transferred immediately to a public hospital with a NICU anyway. So for this reason I started attending the public system, I still continued with the private scans too as it gave me reassurance and was free anyway.

I had a lovely pregnancy, no morning sickness or any problems at all, suffered with swollen hands & feet and headaches and that was about all, it was my first pregnancy and I was loving it! Because of my situation with ID twins I was getting checked very regularly and got lots of scans which were on really good equipment, it was a fantastic opportunity to see them grow, up to 26 weeks I had 17 scans, so nearly one per week. I found the private sector more enjoyable to have scans with, easier to communicate with as they provide translators (my Spanish is limited) but I did find the public sector fine also.

One Friday evening at 27+2 weeks I had a small bleed and went to get checked, to be told I was having contractions and in labour, I had no clue I hadn’t even felt anything. That was the start of the difficult times. I was hospitalised there and then, given the steroid injection for their lungs and put on an IV drip to stop the contractions and transferred to a hospital an hour away with a NICU unit, it was the scariest day, I really thought they were going to be born that day and I was so afraid of the problems they would have. I wasn’t really that scared that they would die, now I don’t know why not?

The medication was working but whenever they took me off it the contractions started again within a few hours so I had to stay hooked up. I hated being in the hospital, as it was public it was a shared room with one other person. As I was constantly hooked up to IV drips I wasn’t allowed out of bed, and also had to keep pressure off my cervix. I found not being able to get of bed to use the toilet by far the most distressing thing, hydration is key in stopping contractions and for someone who pees at least 20 times per day, 3 litres per day made me so much worse! The problems I faced were, the language – my Spanish is ok but not great so it was a barrier, when I was upset I couldn’t communicate my feelings. The Spanish have a very different culture, the whole family visits in the tiny hospital room with relatives the whole time (8am in the morning until midnight) and the Spanish speak very loud in general. One person is allowed to sleep over so generally their husband or mother did. I found this very invasive especially as the curtains only divide half way down the bed (they don’t go around the bed), so I found the lack of privacy for using bedpans and such horrible, I was uncomfortable all the time and very, very emotional. I must add the care I got and the staff I couldn’t fault it was more the cultural difference and the fact that visiting was not controlled. Anyway those weeks before the babies arrived were the longest of my life, I have never felt so emotional or vulnerable and I found everyday like a life time. I had a calendar I made in my notebook in which I marked off every day and set each week as a goal to get to, I knew each day they stayed inside would make a huge difference to them. But I felt robbed, I never got to prepare their nursery or their clothes for their arrival, I never got to walk around showing off my beautiful bump and in general just enjoy the end of my pregnancy. Lucky enough as I had been concerned with the possibility of premature birth I had all their things bought, this would have devastated me if someone else had to buy their things and I had missed out on that.

At 32+2 I sobbed my eyes out to my midwife and doctor that after 5 weeks I felt I couldn’t go another day, I was in pain, nauseous, headaches and very miserable. That night at 12.10am my waters broke, I was ecstatic. When I went down to the delivery area I was nervous as they didn’t have the epidural available at night, but on the scan the babies weren’t positioned right so they would be delivered by c-section, they wanted to wait until 8am the next morning, as with twins they wanted two teams but the contractions got sooo strong and I wasn’t even getting a minute between them, they knew there was no choice, I got prepped and down we went. I was not scared, I was in severe pain but I was excited, there were loads of people in theatre and I will never forget the feeling of the epidural going in (it didn’t hurt, found getting IV drips in much worse). It was heaven like warm chocolate liquid filling up my legs and the pain vanished. Once I lay down, within a few minutes Jac was born at 5.32am weighing 3lb 8ozs I could feel the suction of him coming out, I never saw him and now can’t even remember if I heard him cry or not (mad how I have forgotten already), but I must have done or I would have panicked. One minute later at 5.33am Kayden was born weighing 4lb 2oz, I was shown him for one second and thought my god he is not like an alien or a chicken he is perfect, tiny tiny but perfect!

I was elated, over the moon and just lay there and in “recovery” so happy. Here in Spain partners aren’t allowed in so mine wasn’t with me, but he had gotten directed to the wrong part of the hospital and a nurse had just directed him where to go when he heard the nurse asking someone “is that the twins just born” as they wheeled an incubator past. They said yes so he ran and saw them just as they left me, they were in an incubator together. As I arrived in recovery I got a text from him telling me he had seen them and that they were beautiful. I never saw them that day but by the time I was back in my room he had photos taken and up to me so I was happy with that, my family and his all came in to see them, through a window, no-one only us was ever allowed in NICU. First time they saw or held them for real was the day they came home. I saw them the next afternoon (Saturday) for the first time and it was on a different floor. I had to go by wheelchair as there was no way I could walk, I was in soooo much pain I couldn’t concentrate on much else. When I saw them I just thought my god they are so tiny, the photos made them look big but they were tiny. In Spain they did not wear clothes in the incubator just a nappy and they weren’t allowed have any teddies, or blankets or anything of their own! I saw them again briefly on the Sunday (by far my worst day of pain), Monday and then Tuesday before I went home but I had a cold so had still never touched them. It's very surreal looking at your baby in an incubator, not allowed to touch or hold them, you feel like everyone is watching you for a reaction. I felt detached like they weren’t really mine, it was very strange. I was also in so much pain I felt very distracted by this. From the minute they were born I never worried about them, would they be ok? I just felt like they were being looked after and in good hands, safe. Jac never had any problems, he was just small. Kayden on the other hand was on a breathing machine for three days (I didn’t even realise this at the time) and CPAP for 10 days, then off it and a brief few days back on it. It was only when they told us he was off the breathing machine and we could still see the CPAP on him we realised he had been on a much more serious breathing device. My partner worried about him, I didn’t, I just felt sorry for him with all the tubes. The day I was released I met their paediatrician and asked her all questions, this was the first time I felt like their mammy. I apologised for this as felt that they all must have been thinking I was so uninterested, she reassured me it was normal with the pain I was in. I left them that day not knowing I would not see them for another 12 days. I got a bad infection in my wound and got admitted into the local hospital having to go back for surgery and then was released on the condition that I would stay in bed and not travel to the hospital an hour away to see the babies.

When I was allowed go to see them again they were 15 days old, that night I got to hold my son Jac for the first time doing kangaroo therapy and to be honest it was still very surreal as they are telling me what to do. The baby was put in my top and I just held him there so so tiny. The following night I got to hold Kayden for the first time for the kangaroo therapy. As my partner had been doing this with Jac since 3 days old and later with Kayden when he was off the CPAP, he had really bonded with them already. The next day we went we walked into their room and they were gone, they had finally been moved from Intensive Care into Special Care, I was ecstatic. They were in the same incubator for the first time (apart from the first few minutes when they were born) and it was just beautiful. They monitored them in this on the Tuesday and on the Wednesday morning they got transported to the local hospital. This was a great day for me and was when my bonding started. They were nearly 3 weeks old, and arrived by ambulance at 11am. At 12pm I was allowed in to them, Kayden was in a cot and in a baby-gro... wow!! Jac was still in his incubator, here we were allowed to be hands-on. They got fed every 3 hours and we were allowed go in for as little or many feeds as we wanted. This was a real turning point, to be allowed to hold and care for them, this was the day they stopped feeding through tubes and fed only from bottles. This was the turning point in my own healing and recovery. They came home 6 days later on December 3rd and we have never looked back. They have never had to go back into hospital or been sick since.

To be honest I had a horrible time in the lead up to, and after the birth but now I think the physical pain I was in was a good thing as it totally distracted me from the emotional pain of having 2 babies in NICU of which half of that time I wasn’t able to see them. I didn’t worry about them, I never feared they would die, I always felt they were ok and being well looked after. It's so weird though how detached I felt, I really think I had just prepared myself well knowing with it being twins they might be premature but I never was angry or even particularly upset that my babies were in NICU. For a long time I thought this was very abnormal of me. In summary of my very longwinded story, I look at my two beautiful, healthy, happy 8 month-old boys asleep at night and my heart could burst with the love I feel for them, and I feel so privileged to have been given two. I can’t express in words how it feels and this makes all those hard times irrelevant.

Maeve's story - a premature birth in Australia

During a routine anomaly scan when 19 weeks pregnant, it was found that I had very low amniotic fluid (oligohydramnios). This condition usually means that the baby has a problem so our fantastic obstetrician kept a close eye on us. We had ultrasounds every 2 weeks, and growth scans with a Professor of Obstetrics. There's no cure, and it sometimes does not have a happy ending, so I was told to take it easy and drink lots of water.

At 34+3 gestation I woke up in a puddle - my waters had broken. We arrived at the hospital at 8 in the morning, and at 10:55 Maeve was delivered by c-section as she was breech. She cried and didn't need any interventions, we were just so relieved to finally meet her. She was a healthy 2.4kg/5.5lb and they were so happy with her that she lay on me for 20 minutes before she left for the Special Care Nursery with my husband. During Maeve's 2 week stay in hospital we saw a lactation consultant nearly every day as there were two of them attached to the maternity hospital - a fantastic service, especially for mums of prems. Because she was breech, she had an ultrasound at 5 weeks old to check for hip dysplasia. Shallow hip sockets were found and this early intervention meant she only had to spend 12 weeks in a harness to correct her hips and surgery was avoided.

Maeve was discharged from her paediatrician when she left hospital as he was happy with her. From then on we had support from the local Child Health Nurse, who we have also seen since for Maeve's developmental checks, and been encouraged to call or drop in if we had any questions. For general health, GP visits are free for kids under 16 which makes them very accessible. Maeve had low muscle tone, probably as a result of having not much room to move in the womb. For this we have attended a paediatric physio every few months to get fun exercises to help with sitting, standing, walking and have now moved onto climbing!

I didn't know what to expect from the Australian health system as Maeve is our first baby but have been continually impressed by both public and private systems. Nothing is perfect, but along the way we always felt listened to and were treated as individuals, not just another patient. Maeve is now a very chatty and happy toddler, and a wonderful big sister.

Lisa's extraordinary journey

My name is Lisa, after having our first child Andrew in 1991 we struggled to have a 2nd child for years. Eventually after 4 miscarriages and one ectopic pregnancy we got pregnant with twins following our 2nd ivf attempt but sadly Jonathon and Amy where born at 22 weeks and lived only an hour. That was back in 1997 and it took 7 more ivf attempts and 9 years to have another successful ivf cycle. We were expecting twins again, this time it was two girls. 10 weeks into the pregnancy we were to discover the devastating news that one of our precious girls was not developing properly and that she had neural tube defects which were not compatible with life. We did not know whether the other twin would survive if her sister died in utero. I had a suture placed at 20 weeks as my cervix started to dilate and remained on bed rest, praying that my sick little girl would hang on for a sister. When we learned that one of our girls would die soon after birth we chose names for the girls, Sarah Rose and Rebecca Rose. I got to know Rebecca more and more each day and cherished each little kick knowing that I would have very little time with her when she was born, everyday was a bonus. Sarah stopped growing at 26 weeks due to the excess fluid around her sister bearing down on her so a decision was made that if Sarah didn’t start to grow it would be better to have her in the world for her own good. The day before I was due to go in Sarah’s waters broke and I gave birth to my long awaited beautiful little girls on 27th of July 2006. Sarah was so tiny and whisked away to icu and Rebecca remained in our arms as we said goodbye to her, she was so beautiful, she knew we were there with her but she was struggling to stay alive so we kissed her and told us it was ok to go and be at peace.

Sarah spent too weeks in high dependency but was doing great albeit soooo tiny. Her whole hand was the size of her daddy’s thumbnail!! At 3 weeks she was moved to the ordinary ICU but got an infection and was very ill. Then her bilirubin levels started to go very high and although she was under photo therapy all the time, it was very hard to control after her 5th blood transfusion she was very very sick and the hospital 

were very close to calling us one night to come in and say goodbye to her. These days were so hard, we had already buried 3 babies and I cried and prayed day and night that she would survive.

As time went by Sarah got stronger and stronger and finally after 3 months the day came where she was able to come home, she was 4lbs then. Sarah will be 4 years next Tuesday and is a feisty and very clever little girl, we never stop counting our blessings and of course remembering Rebecca and Jonathon and Amy that didn’t make it.

Our other news is that I gave birth to a little boy on the 2nd of April this year, Adam is a fine healthy baby, again my cervix started to open at 20 weeks and I had a stitch placed which was taken out at 38 weeks and Adam came into the world weighing 7lbs. Adam was a frozen embryo from my ivf cycle that gave me Sarah and Rebecca. Finally my family is complete!!

Keelys journey

My pregnancy with Keely started off normal. One positive pregnancy result and I suppose I could have been forgiven for assuming that it would all go like a dream seeing as she was my second pregnancy and my first had been a textbook pregnancy. How wrong I had been. Problems began at 7 weeks pregnancy, I had a bleed and after a trip to the EPU I had been informed that I was having a threatening miscarriage. I was advised to go home and wait it out and that I would be rescanned two weeks later. Those two weeks seemed to take an eternity but eventually the day of the scan arrived. To my disbelief I was told that all seemed ok with the pregnancy but that I needed to take it easy at least until the 12 week mark. I went part time at work and put all my energy into trying to not do too much. Once I hit 12 weeks a wave of relief hit me and I began to let myself feel excited again.

All continued normal again until 18 weeks of the pregnancy. I had begun to notice a leaking and after making quite sure it was not the sign’s of a weak bladder I brought myself back up to the Hospital. Unfortunately my fears were confirmed my waters had broken and I had preterm premature rupture of membranes (pprom). I was given an extremely bleak outlook with Doctors suspecting I would go into labour imminently with my daughter. To say I began to panic was putting it mildly every twinge I was convincing myself that it was labour starting. All my excitement had been replaced with fear and terror for my unborn daughter. I was allowed home where I was told to return to the hospital immediately if labour pains started. Somehow a week had passed since my diagnosis and I was back again to see my Doctor who seemed quite surprised I hadn’t gone into labour. A plan was drawn up for weekly scans and visits to the high risk pregnancy unit.
I carried on until 27 weeks gestation when I had a significant bleed causing me to be admitted to hospital. I was given steroid injections to help mature the baby’s lungs and sent up onto the ward. Two days later I went into labour whilst luckily still being in hospital. After a very traumatic labour my beautiful little girl was born into the world. Unfortunately she wasn’t breathing and with terror I watched whilst the neonatal team battled to save her life. I heard a small tiny whimper from her nearly like that of a kitten but it was enough to know she was breathing even if it was aided. Keely was transferred immediately to the NICU once they had managed to get her ventilated. Within hours of her birth it became apparent of the severity of Keely’s health. Her only hope was for her to be transferred to Holles St for high frequency ventilation. Her amazing Doctor arranged the transfer and within hours the neo-natal transport team had arrived to transfer her. Keely spent two weeks in the NICU in Holles St where she had a grade 2 bleed on her brain. I got to have my first hold of Keely when she was 5 days old. I really wanted to just run away with her and take her home and not see her getting going through so much.
After two weeks Keely was transferred back to Drogheda where she spent another 8 weeks. Keely had numerous issues in the NICU such as a pda, several blood transfusions, Rop, contractures to her arms and legs, mrsa and several infections. She travelled back to Holles St once again where she had laser surgery on her eyes to try and correct her rop. Life in the Nicu was very hard at times it was a rollercoaster of emotions. Some days were great where you seen her make such progress and then other days you would have set backs and feel like you were getting no where. Eventually after what seemed like an eternity we were finally able to take Keely home where she has thrived and made amazing progress since her traumatic entrance into the world. Keely’s will and determination for life amazed me and it still continues to. She is a true inspiration. The support that we received from family, friends we are so very thankful for. Her amazing


Doctor’s and Nurses who took such great care of her ensured our dream came true, of getting our little girl home. To them we are eternally grateful

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