In 2013 I was pregnant with my second child and I was delighted to find out that it was a girl, after having a beautiful boy three years earlier I was getting my pigeon pair. I’d had some minor problems with my first pregnancy with my son being born via caesarean at 38 weeks and being small for gestational age at 2.485kg due to placenta growth restriction. After some blood tests after his birth, there was no medical reason as to why I’d had this problem and therefore I went into my second pregnancy with no major concerns except for the fact that my second baby may have to be delivered a little early as my son was.
My Premmie journey began on a Thursday I had just completed my last Uni exam for the semester and I was looking forward to taking some time off. I was also glad to have a couple of months before my baby’s arrival as I was scheduled to take my Dad to hospital for cancer surgery the following day. The plan was after his hospital stay he would recuperate at my house until he was back on his feet then I could do my last preparations for my little one’s arrival.
Unfortunately, things didn’t go to plan as I received a phone call from my obstetrician’s secretary asking me to come in which I knew wasn’t good news. In fact, this phone call just broke me to think that something was wrong with my baby and not being able to be there for my Dad when he was going through so much himself.
My visit confirmed some bad news my baby’s growth was decreasing and she was sitting below the 3rd percentile. There was no doubt I’d be having a premature baby the question was just when. I had my first steroid injection that day and came back in for a scan and second steroid injection the next day. The parting words of one of the midwives that worked with my obstetrician were if I experienced reduced movements go straight to the Women’s Hospital. Low and behold that’s exactly what happened that night so off to the Women’s Hospital I went where I was admitted and would spend the next four days in the antenatal ward where my baby was closely monitored. There was definitely some roller coaster moments I was told there wasn’t a bed available for my baby in the NICU so I would have to go to Westmead and my obstetrician wouldn’t be able to deliver. My husband and I had just come to terms with this news when we were told that there wasn’t a bed at Westmead and I would have to go to Newcastle.
We were shell shocked how were we supposed to live in Newcastle for months as well as trying to look after our son? Just after we were told this news the doctor got pulled out of the room he came back in and said “forget everything I just told you some twins have just been moved out of the NICU so you can stay” I remember looking at him and saying “I’m going to cry now” and I began sobbing tears of relief. The relief was fairly short-lived though as the next day after some scan results I was told I was going in for an emergency caesarean ASAP due to reduced foetal movements. My poor husband had just arrived to visit me and there was a mad flurry of nurses prepping me, my obstetrician being called in and me getting pumped full of Magnesium as I had agreed to partake in a research study. The Magnesium was very painful but it may have benefited my unborn baby so I was willing to do anything.
Chloe Jade Arndt was born at 7.44 pm at 30 weeks gestation via classical caesarean weighing a tiny 930grams. She was taken to the waiting NICU team in the adjacent room. While I was being stitched back together I couldn’t see my little girl I could only see my husband I kept looking at him waiting for him to tell me everything was ok. What seemed like a lifetime he finally gave me the thumbs-up it wasn’t until days later that he told me he couldn’t look at me because they were resuscitating her as her little heart had stopped beating. The team wheeled her in for a minute and I got a little glimpse of her then she was taken away to the NICU with my husband following. Very groggy I was stretchered into NICU after recovery and I saw my girl with what seemed like a million wires coming out of her tiny body and hooked up to C-PAP.
The next few days were very tough I was in a lot of pain after the classical Caesar, my Dad was in the next-door hospital recovering from his operation and I couldn’t even hold Chloe due to her having jaundice and being incubated. The nights in Postnatal were the worst hearing babies crying in the halls only reminded me that my little girl wasn’t by my side instead I was waking up to a breast pump. The day that I was discharged from hospital was very bittersweet as I had to leave Chloe behind but it was the first day that I got to hold her.
We were lucky in a way as Chloe was only in Level 3 (intensive care) for three weeks coming off C-PAP and Highflow quickly. Our stay in Level 2 was long and trying though Chloe’s breathing was great her weight gain was slow and she needed to be incubated for a very long time as well as having to receive two blood transfusions. I longed for her to be in an open cot where I could hold her more than at Kangaroo Care and not have to do her cares through portholes. Our last stint was done in the Private Hospital where we were originally booked when Chloe was well enough.
Our total hospital stay was a long and hard 68 days. I can say without a doubt the only way my husband and I got through this time was by getting to know the other parents around us. Through this traumatic experience, we bonded and became a NICU family which has continued after our Premmie babies have come home and will continue long into the future. So my advice to any parent who may be reading this and going through the NICU experience is to get to know the people around you as they are the only ones who can truly understand your situation and who may also become your lifelong friends.
Chloe is now at home and is a beautiful, healthy baby who is constantly smiling and loved very much, also asking about baby products to prepare for Chloe. I have marvelled at her strength and will be forever grateful to have her in my life.
Ingrid and Chloe xo
They are finally here! Como Tomo bottles. Great for combining bottle and breastfeeding! Comotomo Natural-Feel Baby Bottle is the next evolution in baby feeding and unique in the Australian market place!
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The Comotomo bottle is designed to naturally mimic breastfeeding as much as possible with it’s soft, skin-like feel that’s a little squeeze too! It also has super-wide mound and naturally shaped nipple to help breastfed babies switch or wean from breast seamlessly.
The Comotomo Natural-Feel Bottle is super easy to clean and does not require any implements. The wide neck allows for cleaning by hand and as silicone is extremely resistant to heat you can boil or sterilise or even put them in the top rack of the dishwasher!
Available in 150mls (with slow flow teats) and 250ml (with medium flow teats).
Erin’s story and some words of wisdom……….
Falling pregnant was a big surprise for me and my husband at my age of 48. The chance of natural conception was like winning the lottery. Our beautiful Erin is worth more than winning the lottery.
We were just getting used to the idea of being parents for the first time after getting over hurdles of the high chance of miscarriage and other complications and then at 21 weeks, our world turned upside down. To cut a long story short I ruptured my membranes at 24 weeks after having a cervical stitch inserted at 21 weeks. The roller coaster ride began, the information you are given and then the decisions you have to make between 24 and 26 weeks whether you want to resuscitate your baby or not ie do you want to give your baby a chance to live or not are decisions no parent should ever have to make needless to say a very emotional time and lots of tears. Every night I would look at the clock striking past midnight and I would think yes one more day my baby is a little stronger and bigger. I had worked out from serial ultrasounds she would grow 13 grams a day which doesn’t seem a lot but for a baby, at this gestation it means a lot.
After holding onto my precious bundle for another 4 weeks mostly as an inpatient on the antenatal ward I went into labour on the 25/11/2013 and Erin came into the world at 28weeks weighing 1031 grams. Because Erin had to be nursed in a humid environment I had to wait a whole week till I could hold Erin I felt so cheated, when I got to do kangaroo care for the first time I just cried and cried. Thankfully Erin had what you would describe an uneventful course through the Newborn Care with only a few minor setbacks and was discharged home 8 weeks later weighing 2350 grams. Our beautiful daughter is now 22 weeks old (or 10 weeks corrected) and weighs 5830 and is delighting us every day with something new.
Some words of wisdom from a mum with a baby born prematurely.
Like most preterm births, my pregnancy started out a textbook and normal. Having a 5-year-old already, we were more relaxed and knew what to expect.
Things started to take a turn when I hit 13 weeks and I started to bleed continuously. Unfortunately, even after many ultrasounds, no one could diagnose the problem. Sophia remained fine, with no signs of being affected by the bleeding. I was hospitalized at the antenatal ward at 24 weeks after starting contractions – I contracted for 2 weeks. Every night, I went to the delivery suite, returning to the ward in the morning with the achievement of “keeping her in for one more day”!
My time in Antenatal was heartbreaking – being on bed rest was not expected; and my plans to spend the summer holidays with my son before he started Kindy and became a sibling were torn away. I felt deeply guilty for leaving my son, not being able to drop him off or pick him up from school, not tucking him in bed – sent me into tears every morning and every night. I knew I was doing the right thing for my unborn baby at the sacrifice for my other child not having his mummy around…The midwives kept me going and were amazing – every morning they would wipe away my tears and give me the words of encouragement “every day on the inside is equivalent to 3 days on the outside” – I clung to this statement.
We were given a tour of NICU during our stay at antenatal – I remember seeing all the tiny babies in incubators and questioning their age/ gestation so I could compare it with Sophia’s – but in my head, I was in denial that this would be where we would end up. Even when we signed the “election to resuscitate” form, in the event that Sophia would be born early, I was still in denial that it would happen.
At exactly 26 weeks, after 14 days of contractions, my waters broke. Sophia was born 3 hours later, naturally on the surgery table! A horrific experience, but we are so grateful for the team of pediatricians, our obstetrician, midwives, nurses and doctors.
Sophia has whisked away at birth, and it wasn’t until 3 hours later that I got to see her. It was at birth my condition was diagnosed as Placental Abruption.
Sophia was 26 weeks gestation, 830 grams. Her skin was red, shiny and transparent. Her ears were not developed and were just very thin skin flaps. She looked helpless and so very tiny. All the lines and respiratory support were bigger than her. I just remembered thinking that there was so much machinery keeping her alive… The next morning, Sophia opened her eyes and looked straight back at me, though the incubator, while I held her hand, that was the first time I cried…. did she know who I was? I hated that I loved her so much already…..
Our life in NICU began. Sophia had chronic lung and had constant battles with oxygenation, anemia and infection. She was anemic and during her time in NICU, had 5 blood transfusions and several bouts of infections requiring IV antibiotics. It wasn’t till 4 weeks before we got to hold Sophia for the first time, when the humidity was turned off in her incubator. For a mum, not holding your baby on the day she is born is an awful, helpless feeling…. We spent 9 weeks in intensive care, which was the hardest for us, as she just seemed unable to get off CPAP, and her monitors were constantly ringing. I remember watching babies come and go, mums holding and breastfeeding their babies, whilst we were just praying constantly for Sophia to just breathe well…. I learnt that every baby’s journey is different and they are all individuals, our Sophia just needed time, and if that was the case, we would give her as much as she needed…. Time, prayers and lots of love…
Christmas came and went, New Years came and went and our son turned 5 and had his first day in Kindergarten. I really don’t remember much about the holiday season; every day was spent in NICU, I just wanted to be next to my girl, to feel helpful as her mother. Every morning I felt like I was rushing to get to Sophia. I would cry driving to the hospital and as soon as I reached the car park, I would stop, and run through the hospital to get there. My life consisted of looking forward to her cares (nappy change, face wash), kangaroo cuddles, pumping every 3 hours, rushing to pick up my son from school and swapping with hubby so he could go to the hospital.
What we did realize during our experience is the overwhelming support from family and friends – from mums at my sons’ school cooking and doing school pick-ups, ladies from church who delivered hot dinners, friends who texted us daily for updates and family who took it in turns to cook dinners and care for our son. Our family became stronger, and I saw strengths in all of us that I didn’t see before. My husband’s strength, positivity and support shone through this whole experience, and I really can’t see anyone else who could have got me thought this, but him. He never missed a blood transfusion or procedure to be by Sophia’s side. He sat holding her hand for the 4-hour transfusion, even if it was in the early hours of the morning, only to rush to work straight after. He was the pillar that held me up, when all I wanted to do was a collapse.
Most of all was our fellow NICU parents. They were our daily support group, we’re there to share our sadness, joy, milestones, and anxiety, and were there to share our daily coffee and dinners during quiet time or nurse change over. Their strength gave us strength. Out of a difficult situation, the positive was, that we met some amazing families, friends that will stay in our hearts and lives forever. Ever since our time in NICU, our “NICU Family” has remained a constant in our lives, and we couldn’t live without them.
Sophia came home after 86 days in NICU, before her due date. She is a healthy, happiest and settled baby. Someone once asked me if I believed in angels, I do, and I have been lucky to have one. Sophia came to teach us how delicate, fragile and important life is. That – at any moment life can change, but love, faith, family and support can get you through even the most difficult of experiences.
We’ve been married for almost 9 years. My husband has a son Kayden (my stepson) who is 11 and we have together a daughter Camila who is 6 and Amelia who is 10 months old. After Camila, we swore off having more children as Camila was born at 30 weeks and had to spend almost 3 months in NICU. However I think it was the 5-year itch we decided we wanted to have 1 more, we were devastated that we miscarried at around 10weeks. We were lucky enough to fall pregnant soon after. I was closely monitored weekly due to the risk of premature delivery and miscarriage. Pregnancy was normal and I felt great until 26 weeks, my cervix started to open and I was put on light duties. I managed to carry to my 34 weeks check-up and that is when my life changed. My OB told me my baby had a growth on its neck and measures around 3cm in addition to high blood pressure. I was booked in for an ultrasound that afternoon. By that evening I was booked in with specialists at the maternal-fetal and development centre. After many tests and ultrasounds, the growth was confirmed at 7cm and I was booked for c-section the following Tuesday. We were so worried what our baby would look like, how big the growth was, would it be cancerous and if our baby will survive.
17 December 2013 Amelia was born. She cried with was a great sign that she could breathe. The growth was so much more than we both imagined and we were lost on what to do from here. Amelia was immediately intubated and taken to the NICU. By day 2 we were given the all-clear of cancer and had the diagnosis of a rare condition called Lymphatic malformation. Which is the lymphatic system not forming correctly? Currently, there are no tests for this, however, from my research, she would have always had it but it obviously didn’t appear or grow until the 34-week ultrasound. We were told that was only 1 Case 12 years ago at the Royal Hospital for Women and treatment is unknown. We had the experience of NICU before but Amelia was a totally different experience. One great thing about being in the NICU, is that you meet wonderful families and support each other. Almost a year on and we are still in contact, we don’t talk regularly but when we see each other it’s as if we saw each other yesterday. We have an unspoken understanding.
Amelia was 4 days old when she had her first sclerotherapy surgery. Sclerotherapy is a treatment done under anaesthetic using ultrasound for guidance. I didn’t see any difference with the sclerotherapy at all, it only made her more swollen. It was very hard to see. We got a phone call one day while we were treating our other kids to a hospital free family day out. That ended quickly, they have to perform a tracheotomy surgery ASAP at just 4 weeks old. We again were a mess!
It was hard to see and accept, but now looking back, it was one of the best decisions to date. It has kept her alive and even saved a few extra hospital admissions as her airway was now secure.
Amelia has been having surgery every 6-8 weeks at The Children’s Hospital at Westmead…
Amelia’s specialist doctor is smart and compassionate and after finding him on a Lymphatic malformations Facebook support group, we were transferred here from Randwick and have never looked back. I trust him 100% with Amelia’s life. Amelia wouldn’t have a promising future without him.
Looking after Amelia is a full-time job due to her tracheostomy and feeding tube. Only my husband and I are trained to care for her and she has to have one of us by her side. We are 100% reliant on each other. I’m no longer able to work, which I miss a lot. My husband works for himself and owns a carpet cleaning business, so if he doesn’t work, he doesn’t get paid, so he’s working quite a bit lately.
Having a premature baby and now with special needs has changed our family significantly. It’s the constant worry about Amelia care, the added stress of being down to one income indefinitely, as well as caring for our other children.
While Amelia is in hospital, we live as single parents: I stay with her at Westmead and Hubby looks after our two other children, Kayden and Camila, at home.
Kayden is 11 and Camila is 6. Even though they get cranky that they are forgotten at times due to Amelia’s constant care, they love her very much!
To date, Amelia has had 10 sclerotherapy surgeries, 3 laser surgeries, tracheostomy, tonsillectomy, multiple MRI’s, 3 blood transfusions and uncountable general anaesthetics.
She is one tough cookie and has given us the true meaning of patience, compassion and love taking it to a whole new level.
Amelia spent 123 days in the hospital before she was allowed to come home for the first time and has since had 5 more hospital admissions. We know this condition is with her forever, it’s going to be a very long journey for our little princess. We are just very thankful that she is here and is being treated, in our opinion by the best doctors in the world!
Our relationship with each of these Doctors is built on trust and we have complete faith in them caring for our daughter.
For instance, one doctor came to us early on suggesting a drug called Sirolimus, it is a drug normally used for transplant patients. The doctor was aware they were currently trialling it in the US to treat Lymphatic malformation. We were asked if we would like Amelia to use it under trial conditions, we did research and asked a lot of questions and learnt that 85% of cases see a noticeable difference. The risks are there, it lowers her immune system so meant we would have extra bouts of illness on our hands. We said yes.
Within a day Amelia was put onto a 2-year plan using this drug under the trial conditions but here at The Kid’s Hospital. Within 2 months we saw a noticeable difference in her lymphatic malformation, they had reduced in size, however, the downside was she was hospitalised for a respiratory virus.
Our doctor went above and beyond and sourced financial assistance from the hospital to fund this for us as the drug wasn’t government funded for Amelia’s condition and would cost in excess of $600/ month.
Amelia would not have the life she has today without the wonderful doctors in NICU and children’s hospital. It’s a long journey and at times very tough but having our children with us makes it all worth it and I feel I’m a better person for it.