Bub Born Early

Was Your Bub Born Early?

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BubBE Stories

Read premature birth stories related to these topics:
 
Causes of Early Birth                        Gestation at Birth                         Loss of a Child                     Complications           Adult 'Prems'
A car accident                                     22 weeks                                       17 weeks                              NEC - Story 1, 2        Mary's Story
Preeclampsia - Story 1, 2                   23 weeks                                       19 weeks                              CMV                          Amanda's Story
Chorioamnionitis - Story 1, 2, 3         25 weeks (twins)                           21 weeks                              ROP - Story 1, 2
PPROM - Story 1, 2, 3                       26 weeks                                       22 weeks (a twin)                 IUGR - Story 1, 2
Bicornuate Uterus                              27 weeks                                                                                     PDA
Placental Abruption - Story 1, 2        28 weeks                                                                                      Ostomy
                                                            29 weeks                                                                                     CLD - Story 1, 2
                                                            30 weeks - Story 1, 2                                                                   G-tube
                                                            32 weeks                                                                                      Broviac Catheter
                                                            33 weeks                                                                                      
                                                            35 weeks                                                          
Natasha, Clayton and Hudson's Story...
 
Our beautiful baby boy, Hudson Garan Hough’s, entry into this world wasn’t to be an easy one….
 
The story starts at the beginning of 2006, when my partner Clayton and I, both Environmental Consultants, began trying to get pregnant.  As it turned out, that was to be the fun and easy part and I found out I was pregnant in early February.
 
 
Me - two weeks before I gave birth
 
Around that same time, however, I was diagnosed with antenatal depression. I resigned from work after 8 weeks of pregnancy.  Just 6 weeks later I was struck down with terrible stomach pains and underwent an emergency appendectomy.  The doctors told me that there was a chance my baby wouldn’t make it through the operation, but he showed his tenacity when later that week he was seen sucking his thumb on an ultrasound!
 
Once out of hospital family and friends stated that after all that had happened I would surely be able to enjoy the rest of my pregnancy event-free.  Unfortunately the universe had other plans!  At 22 weeks 5 days into my pregnancy, Clayton, his sister and I were involved in a car accident when the car I was driving was hit by a drunk driver with no licence who failed to stop at an intersection.  The trauma of the car accident caused a small placental abruption and is likely to have 'stirred up' the healing appendicetomy resulting in chorioamnionitis which ultimately precipitated preterm labour. Hudson was delivered a week after the accident on 24th June 2006 at King Edward Memorial Hospital for Women (KEMH) in Perth.  He weighed only 580 grams and was born with his eyes still fused shut.  And after all that had already happened our journey was really only just beginning….
 
(have sound on)
 
In his first few days of life we were told to expect Hudson to take three steps forward and two steps back.  It was wonderful when at 9 days old Hudson opened his eyes for the first time just before our very first cuddle. 
 
(have sound on)
 
We were so proud when he was transferred from the ventilator to the CPAP machine at 17 days old, but devastated when just 9 days later his infection indicator (CRP) levels rose, stomach distended and he was placed back on the ventilator.  Numerous blood tests were carried out and antibiotics administered, but no source for the infection was found.  When he appeared to be getting better a week later, he was placed back on CPAP.  At 7 ½ weeks old he reached the 1 kg mark, by 10 ½ weeks of age he was able to maintain his own temperature and was placed in an open cot, a few days later he was receiving oxygen via nasal prongs (or PBF) and at 12 weeks old he finally made it into the High Dependency Unit (HDU)!  At this point we thought we were on the homeward stretch….but unfortunately that was not the case.
 
 
Hudson - at a few days old he is only a bit larger than his Grandpa's hand
 
When he was 13 weeks old I suspected that all was not right with my son.  I expressed my concern to Hudsons’ nurses and doctors and they agreed to monitor him closely overnight.  The next day Hudson’s stomach was again distended and he rapidly became gravely ill.  He was immediately transferred from KEMH to Princess Margaret Hospital for Children (PMH) and had an operation to repair an inguinal hernia that night.  As his symptoms had still not abated by the next day it was decided that a bowel operation was required.  Four centimetres of his bowel had to be removed due to Necrotising Enterocolitis (NEC), which a biopsy determined was caused by a rare manifestation of the Cytomegalovirus (CMV) (read about his case here - JournalArticleAboutHudson.pdf). After two and a half weeks at PMH during which he progressed from the High Frequency Oscillation (HFO) ventilator to normal ventilation, then back to PBF, he was transferred back to KEMH.
 
 
Hudson -  very sick with NEC
 
As he approached and past his expected due date of 17th October 2006, Hudson was gaining weight and seemed to be recovering well from his surgeries.  The goal was now to wean him off the oxygen and monitor his eyesight for any progression of his Retinopathy of Prematurity (ROP).  Eventually it was decided that his ROP had progressed to the stage where laser surgery was required so he returned to the childrens hospital for the day at 17 weeks of age.  The day after his ROP surgery it was thought that he was breathing well enough to come off his PBF. He went off and on his oxygen for another few days and then came off it completely for about three weeks.  However as he was still desaturating quite frequently, it was thought that unless he went back on PBF he would continue to need monitoring at the hospital.  Clayton and I decided that in order to be able to take Hudson home, and for the sake of our own mental health (!), that he should go back on the oxygen.  After being trained in the use of the oxygen regulator and a night of parent-crafting we finally left hospital as a family on December 3rd 2006, a lengthy 5 ½ months after our son was born.
 
 
Clayton, Hudson and I - the day we finally took our baby home!
 
We haven’t left the hospital completely behind as Hudson still has regular paediatric, respiratory, ophthalmological (eye) and surgical follow-up appointments to attend.  He also has Global Developmental Delays and mild Cerebral Palsy that requires him to have regular sessions of Occupational Therapy, Speech Therapy and Physiotherapy.  It took 18 months for him to be completely weaned off his oxygen requirements and around the same time he was prescribed his first pair of glasses.  At 3 years of age Hudson was fitted with Ankle Foot Orthosis (seen in the middle photo below) to help correct his toe-walking style.  As his early birth means his birthday falls 6 days before the schooling mid-year cutoff, Huddy was eligible for kindergarten in 2010. He attends an early intervention centre with other children with disabilities and absolutely loves it. Despite all of the obstacles he has faced, Hudson today is a gorgeous, smiley, cheeky little boy who is loved, adored and admired by people the world over (literally….through the power of the internet and a grandmothers network of friends!).  We look at him now and just can’t believe how lucky we are to have him.
 
                                                              
 
                        Hudson - at 2 years of age                                                               Huddy's first day of kindy                                        Laughing with his baby brother Malakai
 
As the parents of an extremely premature baby who have lived through the NICU experience what we would like to say to other parents, and their friends and families who may be reading our story, is to NEVER LOSE HOPE!  It is hard when you are bombarded with negative likely outcomes before and after your child is born, but just the fact that your baby has made it as far as the NICU is reason to have hope and reading stories about children such as our wonderful ex-23 weeker confirms that miracles really do happen!
 
 
                                             
Having fun with Mum on the slide                                           Huddy at 3 yrs 3 mths (actual)                                  Huddy with his Mum, Dad and baby brother Malakai
 
 
 
Annie, Mick and Tristan
 
Our journey really began in 2005 when my husband Michael and I decided to make the big decision final and start a family of our own.  After months of trying we were elated to find I was pregnant with Skye in early February but were devastated to experience a late miscarriage at 19 weeks.  Doctor’s couldn’t explain why, nor could they (or autopsy) determine why she was only the size of a 15 weeker. It was put down to “just one of those things”. We attended an “Interment of Ashes” conducted monthly by Pastoral Care Services at King Edward Memorial Hospital for Women (KEMH) in the connecting Memorial Garden in a simple burial ceremony to say our goodbyes to our little angel with wings.

Eight months passed and were thrilled to find that our dreams of becoming parents would once again be realized.  I was positive this would be a smoother pregnancy, unfortunately this wasn’t to be the case.  I started bleeding at 5 weeks and suffered severe cramping.   My natropath (also an RN) told me that if I was still cramping that bad after 2 weeks a miscarriage was more than likely imminent.  

A six week ultrasound confirmed a viable pregnancy, however, I continued to be plagued by cramping throughout most of my pregnancy. A twelve week regular ultrasound showed everything to be progressing well (happy little chappy sucking on their thumb!!)  I presented with another bleed at 14 weeks, again an ultrasound proved all was still going strong. At sixteen weeks, routine blood tests came back with a high level of AFP protein and had a 1:200 risk for a Spina Bifida baby, a nervous 2 week wait revealed on a detailed ultrasound a perfectly healthy baby.

Around the same time I was picked up having small traces of protein in my urine, slightly raised BP, showing signs of swelling and expressed (a couple of times) suffering from increasing severity of headaches, especially the least 3 weeks except my GP/OB continued to tell me everything was “fine”.  The same when I had my regular appointment just over 28 weeks and casually informed us the baby was indeed growing as it should.  Medically we had some concerns he could not answer and referred me to a specialist.  After guiding us through our options the specialist did her own measurements (a few times!!).  At this stage I was 29 weeks and 1 day, had gained 18kg when an urgent ultrasound confirmed that our baby was suffering from severe Intrauterine Growth Retardation (IUGR) and had a 23 wk body & a 27 wk head as a result of reduced blood flow through the placenta.  I was later told after his birth that my placenta had several dead bits and was very unhealthy.

I was administered the first of two Cortisone steroid injections to help the baby’s lungs develop before being flown from Geraldton to Perth by Royal Flying Doctor Service (RFDS) then admitted to KEMH that night. I was told I was suffering from a condition known as Preeclampsia. I was monitored for nearly 2 days though second ultrasound showed he was deteriorating, with blood flow further decreasing it was decided our little boy Tristan Jye had to be delivered by “classic” caesarean by days end.
 
                                                                                                                     
 
            40 minutes old 565 grams                                 Day 9 Third Mummy                                Day 14 First Daddy                                 Nearly 6 weeks on...Daddy's  
                     Severe IUGR                                                        cuddle                                                           cuddle                                              wedding band still fits!
 
He was born 16th August 2006 at 4.46pm (29w + 3d) weighing a mere 565gram (1lb 4oz) and 30cm in length (12inches). He should have actually been 2-3 times that size for his gestational age.  It was approximately 5 minutes before he took his first breath but proved to have a strong set of lungs and was off the ventilator within 24 hours. Doctors gave us the rundown on his condition, statistics for survival and problems we may encounter later in life.  We were told if he made it through his first week he should have a 50% chance of survival.  “It’s like weaving through a land mine” and “it’s like walking a tight rope” we were warned for the next three weeks.  His outlook seemed so grim…..nothing they said or experiences in life could have prepared us for the journey that lay ahead.  The uncertainty was very overwhelming.

Michael had developed a cold so it would be two weeks before he could safely hold our boy but I was lucky he was strong enough to enjoy our first “Mummy cuddle” at only 3 days old. I was given yet another reminder of our situation when the nurse honestly told me that this maybe my only cuddle so to treasure every precious moment. His entry into the world had left him with a deep wound to the shoulder. With no immune system or white blood cell count to help fight suspected infection, continued blood tests were carried out and a broad range antibiotic was given until CRP levels showed infection had cleared but no source of the infection was ever found. Three weeks had passed and there were growing concerns of a bowel complication. A Barium procedure (also known as a contrast understudy) confirmed he hadn’t passed him full meconium plug, with stomach distended he was placed back on the ventilator until suppositories helped clear the blockage and the need for surgery was averted.

Slowly he progressed, weaning off CPAP then onto oxygen (PBF) and started very small regular feeds. Stopping and starting a few times due to infections, one major, of which required isolation for two days and a special drug that had to be made and sent over from Princess Margaret Hospital for Children (PMH). At 5 ½ weeks old he reached his 1kg milestone and things seemed to be going well. He was moved into Special Care Nursery 2 (SCN) nearly a week later but his heart rate dropped suddenly, suffered an apnoea episode, turned blue and had to be resuscitated for approximately 5 minutes (then once more a week or so later) which meant he was moved immediately back into SCN3, placed back on CPAP and then eventually weaned off PBF in for the last time. It was then that we were informed of 2 tiny cysts on his brain though Doctors ruled that they were in fact non-problematic and would cause no issues later in life. After 8 weeks and 4 days in a humidity crib he was able to maintain his body temperature he was transferred to an open cot, only chest shadows prevented it from being done sooner.  Three days on and it was our time to move to the High Dependency Unit (HDU)….WOOHOO!!!

This was the road to home…….smoother but not to be made short!  
 
A groin hernia operation at PMH meant he had to be a minimum of 1800grams with a discharge to go home 2-3 days later. During that wait he had his 5th blood transfusion. In the very early stages his body wasn’t producing red blood cells and with constant blood tests/heel pricks it made him weak and always looked extremely pale.  Over time his body began to make enough that before discharge he no longer required any further transfusions. He past his expected due date of 30th October 2006 with surgery booked a week later which went well, then came the impending day of parent-crafting ready for home, only to find out the morning would bring serious brady’s, desats and a suspected virus. A two day visit to isolation, nil by mouth, IV’s, blood tests and specimen cultures were undertaken but all came back clear, another unknown! Second attempt to parent-craft 10 days later, except, once more woke early the second morning on discharge day with a hernia on the opposite side.  So after another short 3 day stay in hotel PMH (!!!) and what felt like the longest 3 ½ months ever, we finally embarked on our most anticipated and frightening journey yet.…..going home on the 26th November 2006 weighing 2225grams.
 
                                                                                                                           

                           ~12 months C/Age                                                                                <......................Two years on.........................>

 
 
Today, thanks to the staff at KEMH Tristan is now a gorgeous, cheeky, active, relatively healthy little boy who has recently turned 2. He continues to suffer from chronic lung disease, defying all predictions that he would most likely go home on oxygen as well as reoccurring ear infections with an outlook of grommets in and maybe Adenoids out!  He still has head/body disproportion….size 000-0 bottoms/size 1 tops….with some difficulties getting past his head!!! They are unable to explain why but he will continue to be tiny then catch up more in his teenage years. The effects of severe IUGR have also caused developmental delays and may need the aid of a tutor through school though is going from strength to strength, constantly making us proud and we feel so blessed that he is even here with us now. Through the wonders of modern technology, his stubborn will to live, the powers of be and hope…… amazing things can happen.  Our little champion and others alike are living proof that miracles DO happen……EVERYDAY! 

Occasionally I still get angry at the level of negligence, more so what our GP/OB put us through (our son) and can’t help sometimes blaming myself.  I had no idea such a condition existed and had never even heard of it before having Tristan. My only wish is that I had been more educated on the signs/symptoms and hope that by sharing our story it will inspire others to become more self aware of this serious, potentially fatal condition. I have since been classified as being in the 1% high risk for severe Preeclampsia. We are currently talking about having our second child soon and even though I feel quite anxious, knowing I will have strict monitoring throughout, an acquired knowledge and a renewed trust in my gut instinct gives me comfort that with whatever happens all will be a much more positive outcome. Keep all your bits crossed for our next impending chapter in life!!!!

Thank you for reading and if you are pregnant, suspect something is wrong, do not hesitate seeking medical advice (even a 2nd opinion) as it could end up saving a life….or two!

Written by Annie, Edited by Michael and Drawn on by Tristan
 
Kathryn, Michael & Talia's Story
 
Read about their story at www.preminperth.net/our-little-premmie/
 
 
I fell pregnant with my daughter in the middle of July of 2005, one short month after we were married and after 1 cycle of clomid tablets (fertility drugs that induce ovulation). We found out that we were pregnant at 4wks after having a blood test that my doctor ordered to see if I was and low and behold I was. We were so happy that we told everyone that we knew. Everything was going well, even the morning sickness wasn’t that bad. At my 12 wk scan in September everything was going great - we saw a nice heart beat etc. By 15 wks I was over the morning sickness which I was happy about. We had a scan at 18 wks in November and we found out that we were having a girl. We were very happy because we never thought that we would have a girl (as I have 3 elder brothers and my hubby Scott has all brothers too). We told the in-laws and they were so happy that we even started talking about names. We had Mackenzie Lee picked out.
 
The morning of my 21st wk I woke to a back ache that was low in my back. I just thought that I had slept wrong in bed so I just went about my Thursdays routine of shopping etc. I was having tea at my parent house as we didn’t live far from them and I told mum about my back ache that morning but thought nothing of it. My parents went to visit some relative and I stayed at home as I wasn’t feeling too well. Went to the toilet and I had a show of some blood, I thought maybe that I had did too much that day so thought nothing of it until mum and dad got home. Mum said I should go to the hospital just in case as my back ache was getting worse. When I arrived at the hospital I had to wait for the doctor as he was busy. I explained what was happening and he sent me down to the maternity ward to get the baby’s heart rate monitored and everything was going great - she had a strong heart beat. So the doctor sent me home and said to rest, so we dropped mum off at her house and went home.
 
At 1.30pm on the 2nd of December I was laying in bed and started to get strong pains like I needed to wee badly so I went to the toilet but I couldn’t wee so got back into bed. It took about 10 mins to get comfortable when I needed to go back to the toilet as the pains were so bad that I thought something was wrong.  I woke Scott on the way to the toilet and told him what was happening. I went to the bathroom but before I could get to the toilet my waters had broken, but I didn’t realise I just thought I had wet myself. So this time I weed and when I wiped I could feel my daughters head, and I freaked out. We rang for an ambulance and they said that it would take some time to get there. I was in the bathroom trying to hold my daughters head up inside of me until the ambos could get there. It didn’t work and she was born on a towel on the bathroom floor. We heard her cry and thought maybe we could do something, the ambos arrived a couple of minutes later. They cut the cord as she was still alive and we were rushed to the hospital. They bagging my daughter all the way to the hospital and took her straight in and they worked on her for 1hr before they even came and saw to me, but she was born so early they could do nothing for her. Once she passed away they came and told me that she was gone and all I could think was what would have happened if the doctor that had seen me had done something else to help. We found out that she weighed in at 400 gms and about 8 inches long. After all the crying, sobbing and more crying we decided to call her Hope Louise as what we were going to call her was too big for her. I will always remember Hopes birth and death as she was born on my brothers birthday. Hope’s funeral was 5 days later and all I could do for days was cry. They found out that the cause of Hopes early birth was due to chorioamnionitis, which I had never even heard of before.

What made it even harder was that my niece was born on the 10th of December. We had Christmas with them but I handled it very well as I was on anti-depressants.

By the middle of March everything was going well I was over the crying everyday and was into just remembering what had happened, when I told mum that I hadn’t got my period as of yet after the birth of Hope. That’s when my mum said to me “Kristy I think you are pregnant,.” Being me I said there is no way I could be as it took me over 2 yrs to fall with Hope, so to stop mum believing that I was pregnant I went and got a couple of pregnancy tests and went home to do the test. Well I was pregnant and I didn’t know what to do. I just sat and cried my heart out what was I going to do. I didn’t want to be pregnant again to have something happen like last time. Well I went to the doctors and found out I was about 6-8 wks pregnant. I was referred to a High Risk Doctor at Maitland Hospital about 1hr 20mins from me.

I started to have morning sickness from the time I found out I was pregnant and it was such bad morning sickness that some days I couldn’t keep anything down. When I went to the doctors we worked on a plain of action so that I wouldn’t have to go through what I went through before. Dr Woods said I would have to be on antibiotics for 1 wk every month and that I would need to have a scan every 3-4 wks plus see him every 3-4 wks. So I was always on the go. I was so happy when I got passed 12 wks. We had our first scan and we saw the heart beat and limbs but I couldn’t get too attached as I thought that something would happened again. At 16 wks I had a normal morning until 10.30 when I started to have cramping and all I could do was cry. I was lucky as I had my niece living with me at the time and she called the ambulance and I was taken to the hospital and was told that I might be having labour pains. The pains stopped after 2 hrs and they were like 5 mins apart. I was admitted to the hospital for 3 days just to be monitored. It was determined that it was threatened premature labour but thankfully everything stopped. After 3 days I was sent home. Everything was going great but I had to have rest so I was on the lounge from that day on. At 18 wks I had morning sickness that bad that I couldn’t keep anything down - even water was not staying down. So I went to the doctors and I was admitted to hospital and put on a drip for 3 days as I was dehydrated. After 3 days I was sent home, yeah, with no more sickness. A couple of days later we had a scan and we found out that we were having a BOY and we were so happy that we decided to name him there and then and so Delacey was his name. At 21 wks I was taken back to the hospital by my hubby as I couldn’t walk, it was determined that the ligaments in my hip were stretching so that’s what was happening. So back home still on the lounge. When I passed the 21 wks I thought that I might be able to go all the way with this baby but little did I know. At 24 wks we went for another scan but I told hubby that I was ok and took mum. Well little did I know was that after the scan I was told I had to see a doctor and to wait. We waited and waited and finally the doctor came. It was determined that the bottom of my cervix was opening and that I was to go straight to see Dr Woods. Off we go and see him on the Friday, and all he could say was “See what happens when I go on holidays” as he had just got back. That was when he informed me that I was either going to have my baby early or my baby could hold of till term, little did we know. We are sent home to strict bed rest (lounge as I was living back with my parents - long story).

At 26 wks (it was a Friday) I woke to a normal morning and everything was going great until I went to the toilet and I notice that I had some blood, so I panicked , another trip to the hospital and I was admitted. I was monitored very well as they knew what I had been through before. I was to have a monitor on me 4 times a day and was given some steroids. Every time I was monitored I would tell them that the baby wasn’t moving and they would say that’s because I was being monitored. By Sunday I was ready to come home as the bleeding had stopped about 4 hrs after going to the hospital on the Friday, I asked the doctor about going home and he said yes on one condition that I be a couch potato and only leave the lounge to use the bathroom and shower and I said yes. So home I went. Thank god. Everything was going great until 12.30 pm that night, I started to cramp, but they weren’t bad so I thought they would go away, so I just laid in bed and hoped that they would go. Around 1.30 pm the pains were getting worse, so I woke hubby and mum saying that I needed to go to the hospital as the pains were 5 mins apart. So we went to the hospital and the doctor arrived and gave me an internal to see if I was dilated but I wasn’t. So another shot of steroids, and they gave me tablets to stop the contractions. I was told I would be going to Newcastle’s John Hunter Hospital. Instead of the trip taking 2hrs 20mins the trip took 1hr. All the way I was given the tablet every 30mins, as the contraction were still 5mins apart. When I got to JHH I was taken straight to Labour and Delivery. I was given another internal and was still not dilated and the contraction had finally stopped. I was informed that I would be staying at the hospital until I had the baby and I was taken to the ward. That was early Monday morning. I was not given any more tablets to stop the contractions as they had stopped but I went for a walk with my hubby and I started to get pains again. My hubby told them that I was having pains but they didn’t believe him.

I was in a deep sleep Tuesday morning when I was woken with a slight pain in my back so I thought that I needed to go to the toilet so I went. When I got back I was bent over in pain so the lady next to me got on her button and keep pushing until someone came. I was rushed to the labour ward as the nurse said the contractions were too close to leave me in the room. I was examined by one of the doctors and found to be 4cm dilated, I was put on a monitor and told not to move. They rang my hubby and said that I was in labour but it could take hours so not to rush. I was given morphine because of the back pain I was having as I was having my contractions in my back. I had 4 nurses, 2 doctors plus the 2 NICU doctors for baby. All I wanted to do was go to the bathroom as I needed to wee and I was told not to go as I could have him on the toilet. I said to the doctors and nurses that I had a lot of pressure and needed to push, they doctors had just got their gloves on when I pushed and the water broke and out came the baby. It was so fast that they weren’t even ready for him. They cut the cord and took him to the open bed. I couldn’t see properly but I could see them with a mask on his face helping him to breathe a little. I was shown the top of his head on the way out the door. That’s when hubby arrived - 5 mins too late. He went with him to the NICU to see if he was ok. I had a shower and was told I could go and see him. We were asked his name so we named him DELACEY JAMES. He weighed 974 gms (2lb 1oz) with a head circumference of 24cm. He was on CPAP and didn’t need really much help. I couldn’t believe what I was seeing he was so small. I didn’t even want to touch him, as I thought I would hurt him. I started to express milk that day.

Delacey was in a humidicrib from the day he was born. His weight dropped down to 873gms. He had jaundice at 2 days old, we were informed that’s why he was under the blue light. Delacey was on and off CPAP for a while. It was determined that he has stage II IVH and was having antibiotics because he was losing too much blood and they didn’t know where it was going. He had two blood transfusions. He was given medication to close his PDA and it worked, it was determined that he has stage 1 and 2 ROP. He was breathing on his own by the age of 5 wks and in an cot at the age of 6 wks. He had his first bath at 6 wks old and was transferred to Maitland at the age of 7 wks old. He stayed in Maitland Hospital Special Care Nursery for 4 wks where he was having 3 bottles to 1 tube. He was transferred to Muswellbrook Hospital where I stayed in with him and he was taken off the tube feed straight away. We stayed 1 wk in Muswellbrook Hospital when we were allowed to go home. He was 5lbs 6oz when he came home 2wks before his due date.

He has been back in hospital due to having broncholitis just before Christmas of 2006. He spent 4 days in hospital. The only other time was to get his hernia repaired which was only a day stay.

Delacey is currently 2yrs 3mth old and he is 10.2 kg, 84 cm tall. He will be 2 yrs corrected on the 27th of October 2008. He gets tonsillitis about once a month but we are handling that. He has all his teeth and is getting his 2yr old molars. He doesn't talk very well at the moment - says about 40 words. He is to get his hearing checked again to make sure that is ok. He gets his eye checked every 9 mths as he was long sighted in the left eye but that has corrected itself.
 
 
At 20, I had the world at my feet. My Fiancé and I both had strong jobs and were looking at buying our first home. It was 4:30 am when I discovered I was pregnant, (I worked at Coles in the bakery). We were both very excited!
 
I had Morning sickness all day, but still battled along in my job. At 16wks I had severe bleeding and was taken to hospital. Being a country hospital I had to wait around an hour or so for the Dr to arrive. When he arrived he had a feel of my tummy and told me I was miscarrying. I was heartbroken. I was only kept in overnight, they were all 99% sure I was going to lose my little bub. I saw my Dr the following day, but had to wait a week for an ultrasound to find out if my little bub had survived. It was the worst week of my life. I had already taken leave from my job, not wanting to risk anything. When they did the ultrasound I saw my little bub, he was ok! I had bled from around the placenta, but it appeared to still be intact and healthy. I was on bed rest from then on.
 
At around 20 wks my fiancé got another job about 4-5 hrs away, we were staying at his Nana's. In Jan 07 we moved to a very small town, Marvel Loch a farming/mining town approximately 30 kms south of Southern Cross WA. I stayed with my mum, not wanting to disrupt the pregnancy; I was determined to carry my baby. I was having ultrasounds every 2-3 weeks to make sure everything was going ok. At 24 wks I had finally stopped passing blood. I thought I was safe.

At 28wks my waters broke (PPROM, Preterm- PreLabour Rupture of Membranes) there was no warning. I felt ok, but starting feeling sick inside, it was way too early! My mum lives out of town and rang my hospital, they told me to go straight to King Edward Memorial Hospital. My mum drove me the 2 hrs into Perth. The next few hours were a blur, I had drips and blood tests and strapped to the ECG. At around 11:30 pm I was admitted onto the ward. I was given steroids and other drugs to stop my labour. I didn't really sleep much that night. My mum had slept in her car as she couldn't get a room for the night. I had an ultrasound the following day, showing a small 1108 Gms (2lb 7oz).

The next few days passed slowly, my mum was always there she didn't go home for anything. The nurses showed me the NICU, which was scary seeing all the tiny babies. The nurse pointed out, through the window, a baby that had been born at 28 wks. I felt a little bit more prepared for what was going to happen. For the next week and a bit I had seen the inside of the labour ward 3 times with false alarms. On the 24th of Feb I woke up with contractions happening around every 3-4 mins once again it was a trip down to the labour ward. It was going to be a long day. Closer to giving birth it was discovered I had Chorioamnionitis (An infection of the Uterus Lining) I had given my bub an infection also.

Once he started to crown it was over with just 2 pushes. Well, the labour is over and my small bundle entered into the world at 3:15am on Sunday, 25th February 2007 weighing just 1545gms. The first 5-10 mins after birth were the scariest of my life. I saw him be born and watched as the cord was unwrapped from around his neck and then be cut, I then watched as a neonatologist and NICU nurse resuscitated my son. He was born with an extremely low heartbeat and he wasn't breathing. The whole room was silent as they were counting compressions to get his heart beating, Brendan was given a shot of adrenaline to help. He was ventilated, then stabilised. 15 mins after birth I was shown my son. He was wrapped in bubble wrap and blankets, I was so relieved that I finally met him and he was alive, although not breathing himself... he was alive. He was then whisked away and taken to the NICU.

Day 1, after having a nap, I am wheeled down to the NICU and wheeled up to a plastic box (humidicrib). By this time Brendan is 8-9 hours old, just started on CPAP and under Phototherapy lights for Jaundice. Inside the box is a scrawny pink thing, hooked up to wires and machines, there's beeping everywhere and I can't see much of what is my baby. I am crying, not knowing what to think and just wanting to cuddle him. I could only stay for a few mins before becoming overwhelmed.

The first few days after Brendan's birth was a blur, I had to come to terms with the fact that my little boy was going to be here a while. I also had to learn how to express my milk and live away from all my friends and family. I stayed in accommodation next to the hospital, as I lived 4-5hrs away. The accommodation was basic, the room was no bigger than the average bathroom, containing a bed, desk and a built in cupboard. We shared a kitchen and a bathroom/toilet. I tried to make it has "homely" as possible, but there wasn't much point, I only slept there. I ate most of my meals in the parent lounge in the SCN and spent all my time next to Brendan's humidicrib. I remember coming in on day 3 to visit Brendan only to find he had gone, his humidicrib wasn't there anymore. I was devastated, what had happened whilst I was asleep? Had he died, what had happened, where is he?. thousands of questions are buzzing through my head, I finally get noticed by a nurse. But she can't find my baby either, the floodgates open, she was asking other nurses and no-one knew what was going on. Had they lost my baby, and how?? I was told to go and ask the co-coordinator of SCN2 , there I was pointed in the direction of my little boy. He had improved and been moved to the next level of care. A huge relief!

It seemed Brendan was doing really well, being in the SCN level 2 I was able to stay with him longer, change nappies and start being somewhat a mum. I was so happy that my little boy was doing so well. This was to change and quickly, on day 9 Brendan contracted two infections and was back onto another round of anti-biotics. Day 10 early morning, I receive a phone call from the co-coordinator of SCN2. Brendan had "given up" he'd stopped breathing and had to be resuscitated and was back in the NICU. I think this was the quickest trip I ever did from being asleep in my room and getting into the NICU. He was on CPAP again. I was devastated, he had been doing so well, progressing nicely and then we were back to square 1. After a little over a day in NICU (SCN level 3) Brendan was moved in level 3B. I was overjoyed that he was better and off of the CPAP. I was even happier that after less than 12 hrs in 3B he was moved into SCN level 2A. Hurray! I was so happy that Brendan was back in 2A, I began to feel a little more like his mum, rather than just a milk machine. The nurses were nicer and I was able to cuddle Brendan more often, sometimes once a day!!!

I wasn't as stressed anymore, knowing that Brendan was doing well I was able to sleep a little better at night. On day 16 Brendan was moved into SCN level 2B, WOOHOO! Although this move was good, as Brendan was doing so well. It was very hard on me, I sat and watched as babies came and went. Some babies only spending 4-5 hours in the SCN, it is very good for them, but hard for me as we'd been there nearly 3 weeks and still had quite a journey to go. On day 18, Brendan had been holding his temperature well for a few days now and was transferred to an open perspex cot! I was delighted. I even spent the night of day 20 away from the hospital, my fiancé came down for a visit and took me to his parents. I didn't sleep well that night though, I was upset and depressed. It is so hard to walk away and leave my son in the SCN, and even harder to spend the night away from him. I cuddled him before leaving.

When I returned on day 21, Brendan had been moved to an extended section of SCN 2b, Satellite Nursery. I arrived there to be told that only 30mins prior to me arriving they had to resuscitate Brendan. I was a complete mess, I had only spent one night away from him and I almost lost him. Within minutes of me arriving Brendan was being moved back down stairs to SCN 2b. Once I got my cot space down there, I immediately cuddled him. I noticed that his little shirt seemed a bit tight so I undid the button to find that he had a very red ring around his neck. After speaking to the nurse looking after him, we both came to the conclusion that the shirt had put too much pressure on Brendan's neck and airways. From then on I was in control of dressing him. I went down to Target with my mum and we bought some more 5x0 outfits for him to be dressed in. On day 22 Brendan got his first bath. Before his bath we got his hand and foot prints done. I was delighted as I watched the nurse from the SCN give my little bundle a bath.

Day 23, It's been just over 3 weeks since Brendan was born and I have been away from home for 6 weeks. I was upset and depressed, I missed my fiancé terribly even though he visited every weekend. I was depressed and really upset. I went home to Marvel Loch for a few days. It was extremely hard the first day and I rang the hospital whenever I felt uneasy. While at home I got my nursery a little more set up. After a few days of being at home, I headed back to the hospital. I was more relaxed and very happy to be back with Brendan. The next few days were easier, I was happier and felt better in myself. On day 28 I gave Brendan a bath. Day 29 Brendan was moved back up to the satellite nursery. I was relieved and glad to be going up there. Brendan was 1 of only 2-3 babies being monitored. It was much quieter here and far more relaxed too. Brendan still made music with his monitor and I was edgy every time his monitor would go off.

Day 38 is an excellent day for me. Brendan's Nasal-Gastric tube is removed!!! Brendan is now on all suck feeds. The next few days were frustrating. Brendan was on all suck feeds and was gaining weight, but we weren't allowed to go home as he was still on the monitor and still desaturating. I knew that he was so close to going home and I kept getting excited every time the drs came round. Excited and then deflated as the days were still passing and Brendan was still monitored. On the afternoon of day 40 one of the drs came around and was looking at Brendan's chart, she asked to get the monitor taken off! Brendan still had to stay for at least another 24 hrs to make sure that he would be ok. I was so excited, we are so close to going home!! Morning of day 42, the dr did his rounds and did the discharge check for Brendan. Brendan passed and we were able to go home! Brendan was 5 weeks 6 days old and weighed 2190gms when he was discharged, my fiancé picked us up from the hospital just before midday. I finally had my baby and was heading home.

Thank you for taking the time to read Brendan's Journey.
 
Since the birth of Brendan I have since lost another child, at 17 weeks 1 day due to infection and electric shock (got a boot from the hot water system). We are currently trying to conceive our second child.  
 
Sally, Nigel and Brendan
 
 
 
Read about their story at http://www.users.on.net/~ptgreen/
 
All my life I have longed to be a mother, so when I discovered I was pregnant in April 2007 I was over the moon. From the beginning I was very nervous about what could go wrong. For some reason I felt that me being a mother was too good to come true, something that I would never be lucky enough to experience myself.

Things went smoothly in the beginning, not even an ounce of morning sickness, however when I woke to light bleeding at 7 weeks I feared the worst. I went straight to my GP who told me that spotting is common during the first trimester, so chances are everything would progress as normal. As a precaution he sent me for an ultrasound. They found my darling’s strong heart beat, and it was at this point that I learned the true meaning of love. The tiny 2 cm ‘peanut’ on the screen was my baby, and it was the most precious thing I would ever lay my eyes upon. Fortunately the bleeding subsided, and I was left to carry on my journey.

Things remained problem free until 24 weeks, when I was diagnosed with a lower respiratory tract infection that I had caught from a child I worked with. Due to the severity of the infection I was taken to hospital to have a Peripherally Inserted Central Catheter put in. This was inserted into an artery in my arm and fed through until it reached my heart, it served as a port for administering Intra Venous Antibiotics for the two weeks that I required them. This was really unpleasant and also required me to give myself Clexane injections daily to reduce the risk of developing a blood clot in my heart where the catheter was placed. Luckily the antibiotics proved very effective and after two weeks the catheter was removed and my pregnancy continued.

At 28 weeks I was getting confident that I was on the home ward stretch, it was also at this time I took the standard Glucose Tolerance Test to check for Gestational Diabetes. It was the afternoon following this test that I received a phone call from the diabetes service at King Edward Memorial Hospital to inform me that I was one of the 5% of individuals who had developed Gestational Diabetes. This was another hurdle, and one that required frequent ‘pricking of my finger’ to test my blood sugar. All was going well until my Blood Sugar levels became uncontrollable by diet alone, and I was prescribed Insulin, yet another needle to add to my collection.

However, it was at 33 weeks and 5 days that the most worrisome thing occurred. After having trouble sleeping due to stomach cramps I woke at 3.30am to go to the toilet. It was at this very moment that my waters broke. It was only a trickle at first, but by the time I had called the hospital I was completely saturated in amniotic fluid. After rushing to the hospital and leaving a trail of fluid down the corridor I was taken to the Maternal Fetal Assessment Unit. It was here that I was examined and found to still have an undilated cervix, which meant there should be time to administer two doses of a steroid which aimed to quickly develop my babies lungs to increase the chance of respiratory complications at birth. I was then taken up to the ward where I spent the next few days routinely taking an anti-hypertensive medication that inhibits uterine contractions whilst been closely observed for signs of infection from the Premature Rupture of Membranes.

Three days later I felt the contractions come back, very intensely. The obstetrician was brought up to the ward to examine me and found that I was indeed dilated, 5-6cm. I rung my mum and told her, however also said to take her time as it could be hours before my baby was born. The midwife escorted me down to the birthing suite, contractions were now coming every couple of minutes, and by the time my midwife came in to meet me they were basically back to back. I had requested an epidural and just as the midwife had finished setting up the trolley for him to perform the procedure I felt the urge to push. The midwife took a quick look and confirmed that my baby’s head was visible, and also told me there was no time for an epidural, I was going to have the baby then and there. With nothing but a bit of Nitrous Oxide to dull the pain I began to push. A few minutes later my mum entered the room, just as my daughter was crowning, and just in time to see her enter the world at 1.38am. This was 23 minutes after arriving in the birthing suite, and 1hr 58mins after going into labour. My daughter took a few minutes to start breathing, those of which were the longest in my life. However when she let out a loud cry I couldn’t have been happier. She was the most amazing miracle I had ever laid eyes on, and words will never describe my absolute adoration for her. She was allowed to have a cuddle with me before being taken down to the Special Care Nursery. She weighed in at 2070 grams (4 pounds 9 ounces) and was 44 cm long.

Thankfully she had a relatively smooth ride through special care. She had an Intra Venous Infusion at birth to decrease the risk of developing an infection due to my PPROM. She had a naso gastric tube insitu for 10 days. She maintained good oxygen levels and didn’t require any assistance with ventilation or oxygen. On day two she was looking extremely yellow, and needed to be put under UV lights for her jaundice. 1 week later she was being transferred up to the satellite nursery in preparation for her homecoming. She remained in hospital for another week learning ho to breast feed, and on her 15th day she was discharged on full breast feeds, at a big weight of 2335 grams.

Nearly one year on, my daughter is a chubby 10.5kg and 73 cm long. It’s at this timeI find myself thinking more and more about my pregnancy and the birth of my beautiful girl. I was very fortunate to have a baby who suffered only minor complications as a result of her prematurity, and I admire all parents who have endured the journey of having their baby in special care, regardless of their gestation. It is a very trying and emotional time, that requires an extremely strong spirit, and a complete dedication to the little miracle that you brought into the world.  

 
Deegan and Hunter
 

Well you’d say I had a perfect pregnancy. I fell pregnant straight away, didn’t have much morning sickness (lucky me) and everything else was textbook stuff. The only thing we were worried about was the possibility of congenital heart problems as there’s a strong family history. So everything was going along like clock work. I was still in the High Risk Group at The Royal Women’s Hospital in Carlton but that was because of my history etc. 

From about 25 weeks bubs started to slow down in growth but the doctors weren’t too worried as he was healthy and so was I. I had fortnightly scans just to make sure everything was going well. Then at 35 weeks (28/2/06) I woke up and was having pains. I just thought they were Braxton Hicks so I went shopping with my sister. We where having lunch and I was getting the pain about every 5 mins and they were lasting about a minute so we went home and I called the Klimore Hospital and they say come in. They put me on the CGT monitor and took my blood pressure and did a urine test. Then they called the RWH and come back to me about 10 mins later and said that the ambulance was on it's way. The RWH even made the midwife come with me.

When we got to the RWH they did the usual tests and gave something to try and stop the contractions and steroids for the baby etc. They told me that Hunter was in breech and little for his gestation as he had IUGR and that my blood pressure was high. I had Pre-Eclampsia but I had no warning signs at all and my check-up the week before was all normal.

So they managed to hold off the labor for 2 days but on the 2/3/06 at 5:45am I got an all mighty kick to the stomach and my waters broke so I was rushed up to theatre for an Emergency C-Section.

Hunter Rey was born at 6:35am (no one even made it to the hospital in time). He weighed 1705grams and had Apgar’s score of 8 and 9. He breathed on his own straight away. He was taken up to the Special Care Nursery.
 
Hunter - a few hours old

Hunter was transferred to The Northern at Epping as it was closer to home, when he was about a week old. He was in an open cot within a couple of days. He was doing really well and was tube fed for a few weeks with 2-3 suck feeds a day. The only struggle he had was breast feeding. He just couldn’t suck. He was doing really well at bottle feeds so for nine weeks I expressed and gave him that but in the end I didn’t have enough milk.

Hunter came home on the 3/4/06 (after a week of being at home but having to go back to the Hospital to get checked). He weighed 2330gms.
 
Hunter at 1 month old
 
Hunter has done well since then, has had no major problems and has done things relatively on target. He is now a healthy and very active almost 3yr old. He is still quite small at only 10.5 kgs but his Paed is keeping an eye on him. We see the Genetics team at the children’s hospital once a year. We also discovered he had quite bad tongue tie which would explain him being unable to breast feed and he has had some trouble speaking but he is coming along in leaps and bounds and it is improving every day.
 
Hunter today

 Deegan’s Story

I fell pregnant when Hunter was 10 mths old and had another smooth pregnancy. His due date was the 20/10/07 but he had other ideas.

It all started on the 25th of August 2007 when I was 32 wks and 1 day into my pregnancy. It was a Saturday and I was having a cleaning day as I was having a photographer come and do some pregnancy shots. I did the vacuuming and cleaning while David took Hunter out for the day. I went down the street to get bread and milk and bumped into a friend and he mentioned that I didn’t look too good (gee thanks). I turned around and jokingly said I’m probably in labor (little did I know).

Later that day after we have had tea and gotten Hunter ready for bed, I mopped the floor then went and had a shower because my back was killing me. I went to bed at about 8:30 pm but I couldn’t get comfy and was having terrible Braxton Hicks. I tried to sleep but by about 9-9:30 pm they where coming more frequently, approx. every 10min or so. I said to David that I thought I was in labor, but I would try to get some rest as I wasn’t quite sure???? At 10-10:30 pm I got up as I was really uncomfy and jumped on the computer and bounced on my fit ball. I was timing the contractions about every 5 min so I continued to bounce away (it really helped). Then they started coming every 2-3 mins and lasting about 30-50 seconds. I thought I had better call the hospital and when I did they said to come in. Luckily my sister lived in the next unit and was home so she came over to watch Hunter as he was asleep.

We got to Epping at about 12-12:30 pm. It took me about 5 min to walk to ER from the car park and after they took my details, I went up to the birthing suite. They did the usual tests and hooked me up to the CGT monitor. Yep they really were contractions (I don’t think they believed me). They monitored me for about 1/2 hour and then come back saying I had to go to the Women’s Hospital. We waited for the Ambos (who on a Saturday night are very busy) and they arrived at about 3-3-30 am. The whole time I was on the CGT. We arrived at the Women's Hospital at about 4am on the 26th of August. They did the usual checks and hooked me back up to the CGT (the only time I came off it was to pee). I tried to get some sleep (didn’t happen) and David returned at about 11am (he had gone home to check on Hunter and get some sleep). The doctor then told me I had a Bicornuate Uterus and I asked why I didn’t get told before this and he said he presumed I had been.

My parents came in and while they were there my waters broke at around 3:30 pm. I have a chat to one of the paeds who lets me know what would most likely happen. At this point my contractions had almost stopped with one every now and then, however I was still leaking. At 8:30 pm I tried to get some sleep as I hadn’t slept since Friday night. The baby started to have some destats but he recovered ok. At 9:30 - 45 pm the nurse came to check on me and said I might be able to come off the CGT for a while so I could get some rest but then said she would double check with a doctor. At 10ish the CGT started going off. I thought it was because I moved as I was feeling quite uncomfy again. When the nurse reappeared she looked at the CGT then went to the door and the next minute I knew every doctor and nurse was in the room.

A quick internal showed that I was only 3cm dilated and the doctor said they needed to do a C-section immediately. They grabbed an ultrasound machine because they couldn't find the baby's heart beat. It was there but only just. They pumped me with fluids and as I started to panic they asked for David's or my parent's numbers but I went blank and couldn't remember them. They called a Code Green and rushed me into theater. The anesthetist told the nurse to hurry up and get me ready and I drifted off to sleep…………Deegan was born at 10:30 pm on the 26th of August 2007.
 
Deegan at 3 days old

I woke up at about 12 am in a complete daze (the morphine was working). I had no idea what day it was, or what was going on. The nurse told me I had a little boy and that I should try to get some rest and to press the morphine drip when I needed pain relief. I woke again about 6 am and the nurse gave me a few more details, such as that he weighed in at a huge 2133grams (she even went and double checked), had Apgar’s scores of 4 and 9, and he had taken a few minutes to start breathing on his own.

I asked to get up, have a shower and go upstairs but they wanted the doctor to see me before I got out of bed. So I had some breaky and one of the nurses helped me express. The doctor finally came to check my wound etc and the catheter was taken out (ouch). I had a shower and somehow was feeling better that I did after having Hunter.

I finally got up to NICU at about 10-11 am (on the 27th) when Deegan was already 12 hrs old. They said he was doing well, was already off CPAP and was on room oxygen only. He was hooked up to IV antibiotics. The next day(28th) I got my 1st cuddle and he was moved to SCN later that day. Surprisingly I was discharged later that night (7pm) not even 48hrs after having had a C-section. We went up to see Deegan before we left and gave them some of my milk (the little I had at that point). They were just getting ready to pop him under the lights. He wasn’t under them then I got there the next day. On the Thursday they took his IV line out and said he would be transferred to Epping the next morning because he was doing so well. When I read his discharge papers later on it said he had RDS and sepsis though I don’t remember being told any of that. On Friday 31st of August he got transferred via NETS to Epping.
 
Deegan cuddling Mum at 5 days old

Deegan spent about 2 weeks in a isolette. He had a few troubles while there with his temp and it took him 2 wks to pass his birth weight by 2gms. He also had reflux and when taking a bottle he would choke. He finally got the hang of it and was having every feed orally bar the 3am feed when they would tube it. Both the head nurse and I gave instructions to stop this and to wake him to feed.

I spent all of the next 2 days in there with him. We were told that when he had a full 48 hours of suck feeds and had gained weight, we could go home over the weekend for home leave and come back on the Monday. Then if all was going well we could go home for good. He came home on the 1/10/07 when he was 36 days old and weighed 2985gms, although we still had a follow up eye appointment scheduled for the following week.
 
Deegan at 1 month old

Deegan is now 16 mths old, 9.7kg and 73cm long. He still has a lot of motor issues but his Physio and OT sessions are helping. He has started taking steps and just said his 1st word  - cat. We found out that he has hearing loss in both ears but they are hoping grommets will fix that and he will be able to hear again.

But it’s the big smile 1st thing in the morning that makes it all worthwhile

 
Deegan today
My twins, Ronan and Julia were born at 25 weeks 3 days in 2006.  I had an uneventful pregnancy up until then and their arrival was a complete surprise.  They never did figure out the reason for their early arrival.  Julia had chronic lung disease and a PDA ligation.  She was in the hospital for 3 1/2 months.  She was on oxygen at night until she was 2 and has some developmental delays.  Her speech is severely delayed and she has some sensory and attention issues.  Ronan had Necrotizing Enterocolitis (NEC) and had to have portions of his intestines removed.  He had 4 ostomies and was reconnected after about a month.  He had ROP, sepsis, and an inguinal hernia and spent 5 months in the NICU.  He came home with a g-tube and broviac.  At 3, he still has the g-tube, but thankfully we were able to get rid of the broviac.  He also has developmental delays in the areas of speech and motor skills, and sensory issues.  They are both in a preschool program for children with developmental delays, and have made decent progress since their start in August.  We get frustrated sometimes with the pace of their progress, but we have to remember where they started and be patient with them.
 
My husband and I published a book in 2008 called "The NICU Rollercoaster" designed to help other parents of preemies and their families navigate through their time in the NICU.  Our web site is www.nicurollercoaster.com and our book is available on Amazon or if you live in Australia, it is available on http://www.thenile.com.au/search.php?sid =98a7a874a730763de57ade1f025f7481&s=nicu +rollercoaster or http://www.lookforbooks.com.au/Books/The _NICU_Rollercoaster. 

I was born on the 20th November 1985 at King Edward Memorial Hospital, Subiaco, Western Australia. I was born at 24 or 26 weeks gestation (a bit of a debate between doctors about the dates). I weighed in at 570 grams. I spent the first six and a half months of my life in the special care nurseries at King Edward Memorial Hospital before I was allowed to go home.

I was on oxygen until I was 18 months old which caused a few problems when I started getting around as I used to get the tubing caught around furniture and once I melted it by getting too close to the heater!

My health has always been good. I contracted Meningococcal Meningitis when I was 12 but that had nothing to do with being prem.

The only complication that I’ve found is my eyesight, because I am short sided. At the age of approx 5 I underwent 2 laser eye surgeries and unfortunately neither of them worked. As a kid I was supposed to wear glasses, but due to not wanting to be teased at school I chose not to wear them.

In May of 2008 I completed a health study at Royal Perth Hospital which included Lung Function Test and a CT scan of the lungs. This was for all individuals born weighing less than 1500g and managed at King Edward Memorial Hospital between 1980 and 1988. They were interested in seeing how these people have got on as they moved into adulthood. Any siblings born over the 36 wk mark were also tested to see any differences in the respiratory system.  The CT scan found that all prem babies born between these times had mild emphysema which was not at all similar to emphysema caused from smoking.

Hopefully these types of studies will continue as it will be interesting to see what their findings are for future years.

Growing up I was always slim and short. I’m now 24 years old and would you believe it overweight, but still short! I will be getting married next year to my fiancé Ben. We will then be trying to have children of our own (just hopefully not as big as Ben who was 10 pound!).
 
                                                
 
I was born 3 months prem on the May 12 1959 at 1 am. The problem was my blood type was AB- whilst my mothers was 0. And so the battle began. Wrapped in tin foil my parents were told to have me christened and to prepare for the worst.  The fifties was not as medially adept a time as today. The best case scenario was I may be blind, possibly deaf and probably suffer some permanent brain damage.
 
My mother has always said, I fought to get out, I fought to live and that I will still fight anyone! I tend to have a feisty temperament. Aside from that I have perfect vison, I have been a session muso (percussion) and am a senior lecturer at one of Melbourne's universities. My IQ is around 130 and I am as fit as a bull!  
 
I hope this information may give you some insight that prem babies can and do survive!

Amanda's Two Prems Story 

Hello, I am a mother of two and both were born premature. My first was born at 28 weeks and my second was at 30 weeks. I had preeclampsia both times. In 2004, my son was born weighing 2lbs. 9oz. and 15 3/4in. long. It was a difficult time but we made it. He will be four in December. He is very healthy. The only thing he has had to adjust to is glasses and a couple of eye surgeries. Now in October 2008, my daughter was born weighing 3lbs. 2.5oz. and 16in. long. She is doing well. Just yesterday, she began taking a bottle. Soon she will be home. I know that I won't be having any more babies due to the risk of my health. I am thankful for my blessings. I hope my story will give other parents hope. 

Sara, Travis and Alexis' Story 

Angus’ first day of school turned out to be much more eventful than anticipated.  After our goodbyes I managed to get him to sit on the mat, not a tear was shed and I don’t think he even knew I had left.  Outside the classroom I caught up with another mum who also happened to be a customer of mine at the Bank I managed.  One of the first things she said to me was “Oh my god, what happened to you?”  I had no idea what she was talking about, she knew I was pregnant, approx 31 weeks at that stage, and I had nothing else wrong.  I enquired as to what she meant and she explained she was referring to my face.  Huh?  “It is really puffy”.  I had noticed that when I attempted my mascara that morning it went on to my eyelids but apart from that I felt ok.  My blood pressure had been an ongoing issue for the past 6 weeks and I had felt “off” for a few weeks before that but surely I would have noticed the fluid, had it just come over night or had I been ignoring it for a while now?  Work was busy, we were preparing for a major audit in exactly a week but I didn’t feel overly stressed, I thought I was doing quite well managing my stress levels!  Anna told me I had to ring my Obstetrician as soon as I got back to work, and we said our farewells.

I deliberated on the short journey back to the office and eventually came to the conclusion that I would make the phone call and let Ginette ( my Obstetrician) make the call if she wanted to see me or not.  Her practice was at Morphett Vale about an hour drive from our home. The Bank was open by the time I had dropped Angus to school and returned and there was a steady stream of regulars at the counters who I greeted upon entering the office.  On my desk was today’s pile of incoming paperwork and there would no doubt be a huge number of emails requiring attention.  While I waited for my computer to log on I thought I would make that quick phone call and set my mind at ease.  Marie, Ginette’s secretary, answered and reminded me that it was Tuesday and Ginette was not in today did I need to see her urgently?  I relayed to Marie what Anna had said at school that morning. Marie advised me that she would ring Dinette and see what she wanted to do then call me back.  Within only a few minutes Marie was back on the phone, Ginette wanted to see me at Flinders Private Hospital ASAP.  I thought that this seemed like a big fuss over a puffy face but reluctantly grabbed my handbag, informed the staff and headed to my car.  I called my hubby Travis from the car park, updated him on the situation and made my way to Adelaide.  I was about 10 minutes out of town when my mobile rang, it was Marie again, Ginette wanted me to turn around, go home and pack an overnight bag and then meet her at the Hospital.  So I did the U turn and returned home, packed a few basic necessities and headed out again, certain I would be back at work by the early afternoon.

The day went crazy from the minute I arrived at FPH.  I was admitted, changed into nightie, hooked up to machines and had all sorts of tests.  I even got wheeled in a chair to have an urgent Ultrasound of my baby.  This seemed like a huge fuss for a little puffy face!  In between tests I made phone calls to my boss, mum and dad, Travis again, then the Bank.  Ginette came in on her day off and advised me that things were not so good.  I had very high blood pressure, protein in my urine, fluid in my face and hands, the baby was in a low amount of amniotic fluid and was very small for her gestation.  I should be prepared to stay in hospital until the time came when the baby would be delivered, hopefully as close to 38 weeks as we could get.

Oh my god, so much panic over what seemed like nothing, could my baby’s life really be in danger?  I was ordered to have complete bed rest, no walking around the ward, I was to lie on the bed or sit in a chair at all times.  Wow, this was going to be tough, how was I going to run a Bank, get through an audit, pick up my little man after his first day of school and run a household from a hospital bed?

When I phoned Travis he begged me to convince Ginette to let me come home and rest at home.  I reluctantly agreed to ask but deep down I knew if I was at home I would be ringing work, getting it dropped home to me, and even cleaning and cooking because I hated sitting still.  Ginette made it crystal clear that she had absolutely no intention of letting me go home.  She knew me too well.  Mum and Dad were scared, I could tell from their faces, but they remained positive and took my little car from the hospital car park home to their house, thankfully they live only 10 minutes up the road.

Over the next 48 hours I did get used to the hospital room, the constant tests, obs, monitors, daily ultrasounds and phone calls.  I even convinced myself that I would be staying so I had to make the most of it.  My good friends from the Bank Ginny and Michelle visited daily and kept me amused with funny stories of Bank life, as well as lots of positive affirmations.

By the following week I had been moved to a room with a view and sunshine, I had a new friend who also was in until her baby’s birth and had started a fantastic novel of some 500+ pages to keep my mind active.  The Branch got audited and did well, Travis and Angus visited over the weekend and I had a mission to get to at least 34 weeks so my baby could be delivered at FPH, any earlier and we would have to go next door to Flinders Medical Centre where that had the facilities to deal with emergencies and premature babies. I was now 33 weeks and counting.  I had a shocking pain in my neck that no massaging or cream could dull, escalating blood pressure, the odd stomach upset and still did not feel 100%, surprisingly I was still not alarmed.

The situation all felt so surreal, I did not think for a minute that our baby would come early but maybe my instincts told me differently because I did tie Travis down on the weekend to agree on a Christian name for our baby girl, just in case she came early, the thought of her not having a name did not sit well with me.

Tuesday the 1st August and my day had been quiet as normal.  The usual tests, obs, visitors and phone calls, eating, reading and watching TV filled the hours successfully.  At my final night time obs Ken the midwife on duty enquired if I was feeling ok.  I explained that I still had the horrible neck pain but that was all.  My investigations revealed that my blood pressure had escalated significantly.  Ken decided to get some cream for my neck, massage it and then take another reading of my BP just in case it was a false reading.  No such luck, it was serious. Ken explained the process from here, he was to ring Ginette, and she would prescribe one of two things: - 2 Panadol and a sleeping tablet and we’ll see what’s happening in the morning or my baby was going to be delivered tonight!  It still hadn’t sunk in and I was calmly watching TV, it was nearing 11pm at this stage.  Ken returned with the news that tonight was the night and I was to be prepared for theatre.  I was instructed to ring Travis and have him drive down immediately. Travis wouldn’t believe me and thought it was a dream so Ken took the phone and calmly told him again to get dressed, put Angus in the car, pack a few clothes for them both and to drive down without delay.  We would wait for him to arrive then the baby would be delivered.

 There were hospital staff buzzing around me everywhere, I had no time to panic, Ginette came in and introduced the Doctor that would be assisting her (Fariba) time flew, next thing I knew they were all looking at their watches, my blood pressure was still escalating, we could not wait any longer, I was being wheeled across the corridor to FMC.

Thankfully at that exact moment Travis was escorted by the security guard down the passage into this living nightmare.  By now I felt physically sick with fear, how could my baby be born at only 33 weeks and how was I going to cope with a Spinal block in an emergency especially after the 2 lots of surgery I had previously endured.  Would they be able to administer the block safely in an emergency, I could not cope with a complication to my already fragile back.  I was becoming hysterical,  I heard Fariba questioning Ginette in the background “Why are we delivering this baby tonight, she has no typical symptoms of pre eclampsia apart from the high blood pressure” Ginette told Fariba her gut instincts were telling her we were running out of time and something was seriously wrong.

I did not have the Spinal block, I was given a general anaesetic and Travis was unable to attend the delivery, I was wheeled away and put to sleep. 

When I woke I vaguely remember faces and talking but there was no baby, no happy faces only tear stained anxious looking ones and I was in an unfamiliar and very dark room.  My recollections of the following 24 hours are very odd and quite disjointed and some are still coming back to me to this day.

Alexis Maeve was delivered by emergency C-section on the2 August 2006 at 1.44am at FMC.  She weighed a tiny 1.54kg or 3lb 6 oz but she was a fighter.  She was breathing on her own and her heart was fine, how lucky we were. 

Unbeknownst to us, I was sicker than our precious little Lexie as she is now affectionately known. I had the HELLP syndrome and was seriously ill.  I could not walk, had trouble breathing without oxygen, my blood factors were all over the place and my liver and kidneys were suffering also.  I fainted in the shower but insisted on having it and even washed my hair.

The following days involved me at Flinders Private and Lexie in the Neo Natal unit at Flinders Medical Centre.  The 2 hospitals are joined by a long and expansive corridor system that normally is not problem but when you cannot even walk to your ensuite without getting breathless you have to rely on someone to push a wheelchair for you.  I felt very cheated, here I was in a Maternity Ward amongst many a crying baby, pretty blue and pink balloons and flowers galore but there was no celebrations for us, no baby in my room and it seemed to me that everyone was crazy to get excited over Lexie as there was no guarantees she would survive, she was 7 weeks early!

 When I was wheeled across to the NNU to see her all I could do was sit in my chair rubbing her tiny hand through the porthole of the humid crib.  I felt so useless, what did I do to deserve this, why didn’t I listen to my body and stop work earlier, so many what ifs and whys. These were the questions I wanted an answer to but no one could answer them for me at this point in my life.  I put on a brave face but had constant dark thoughts of Lexie dying.  I spent hours crying myself to sleep, crying to my closest friends and family and mentally preparing myself for intense sadness.

I constantly avoided any form of celebration, did not smile for days and shut out any happy thoughts as I thought it would be easier that way. 

Within the next few days Lexie and some twins from FPH did a swap.  She was returned to my hospital as the twins at FPH needed to be in FMC NNU and they were full.  I felt slightly happier that at least now she was near me in the Special Care Nursery and I could take expressed milk to her and even hold the test tube for her feeds. 

During Lexie’s time at FPH I had a blood transfusion as this was the only quick fix to all of my health issues.  It was a gross thought but one that I welcomed with open arms as it meant I would be able to walk with normal Oxygen levels as quickly as an hour after the transfusion.  It was hugely successful and I did feel better within a half an hour of the first unit and only need 2 units rather than the minimum 4 units that was recommended.  Finally things seemed a little brighter.  I vowed that when I fitter and healthier I would also find the time to donate blood to the Red Cross, to date I am still not well enough to undertake this promise but I truly thankful to my kind donor.

Unfortunately Lexie only lasted 2 days at FPH and was transferred back to FMC NNU Intensive Care as her whole bowel started to shut down and reject food so the emotional rollercoaster began again.  There are many highs and lows with premature babies.  A catheter was inserted into her stomach via a long line through a vein in her little arm and they feed her only nutrients such as glucose and sodium for the following days to allow her bowel time to recover.  Slowly they reintroduced feeds and this time she progressed quickly and without any recurrent bowel problems.  She was transferred out of the ICU to the Level 2 area but she still remained in a Humid Crib connected to various monitors and even had to undergo UV treatment for jaundice.

Whilst Lexie was in FMC I was discharged to mum and dad’s house at Blackwood and found myself recovering relatively quickly.  Mum ensured I had 3 good meals and my brother Sam delivered me to the hospital every day for a visit. Mum or Dad and I went down to the hospital again at night time to say goodnight to our little girl as they were insistent that she needed heaps of love, touch and family around talking to her so she knew she was part of our family and loved immensely. I guess that was my parents’ way of justifying the endless visits to the hospital. Travis and Angus visited every weekend and even managed a few mid week visits after school and work.

As time went on I became familiar with my surroundings and comfortable in the knowledge that Alexis was in the best place to thrive.  I got to see so much, babies born at only 26 weeks, babies requiring emergency heart operations in Melbourne immediately after birth and I became conversant in the terms and medications etc that premature babies received. For me knowledge was power, the power to understand Lexie’s situation and put things in perspective finally.  I felt an overwhelming sense of guilt for having sad thoughts when ultimately Alexis was not critically ill and soon she would be able to go home like a normal baby.  Some of the babies in FMC may never go home and some celebrated 100th birthdays.  That is 100 days in ICU!  We were the lucky ones, she was a fighter and despite a few minor setbacks she was still with us, gaining weight daily.  Our tiny miracle baby.

Soon Lexie was well enough to be transferred back to FPH Special Care Nursery until such time as she could be discharged to home.  By now she was 2 weeks old and weighed 1.775kg a gain of just over 200 grams since birth.

Time flew at FPH.  I even started driving myself around and found my independence a blessing.  After 5 days at FPH she was removed from the humid crib, started drinking her feeds from a bottle, had her first bath and sucked feverishly on a dummy.  Friends came and visited more frequently now that she was not so fragile and after a cuddle we often had a coffee in the Cafe downstairs.  I became a pro at the outpatient thing and even found myself in the staff room doing dishes one afternoon.  I had a support circle of midwives that worked in the SCU all whom I knew by first name and vise versa.  They were fantastic at including you in all activities such as feeding, nappies etc and were constantly reassuring you. I thought I had it good compared to normal new mums.  I was getting at least 8 hours uninterrupted sleep a night and I had someone helping me all day.

On the first day of September Alexis was discharged to home.  She weighed 2.262kg and was 4 weeks old.  On completion of her Discharge checks the Paediatrician found an inguinal hernia of her left ovary, thankfully they are not serious and are corrected with surgery at approx 6 months of age.  I was not fazed by the hernia; I was too excited about taking my little baby home to my husband and son.

Alexis had some more minor ailments along the way, milk allergy, reflux, colic, the hernia operation at 7 weeks of age due to the pain it was causing her, fluid retention after the operation, and all the normal childhood complaints but overall, we are very lucky.  She progressed normally, crawling, talking, eating solids and at 18 months she started walking.  She is a real character, very laid back and cheeky like her father.  More recently she has had a number of mild Anaphylactic Reactions to an unknown allergen.  She has a known allergy to Fructose but she seems to be developing a Wheat allergy also.  She has terrible tummy pains and diarrhoea a few days most weeks but she still smiles and plays happily most of the time. 

Each day I feel truly blessed to have my little miracle baby and we will be eternally grateful to my Obstetrician Ginette, Paediatricians Simon and Scott, NNICU and SCN nursing staff for the wonderful care they gave Alexis and our family.

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