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My pregnancy with Winter was a dream, every scan & appointment was perfect, we were both healthy, it was a low risk pregnancy & I considered myself lucky everyday to have such a good experience as a first time mum.
On Saturday December 4th, at 30+3 - my water broke at 2pm. I’d had 2 growth scans that week because she was measuring a little small & a follow up appointment with the OB, everything was great, so I was sure I had just wet myself & waited for it to go away, but it didn’t so we headed into the hospital at around 5pm. They tested the fluid & it came back positive as amniotic fluid. The plan was to try keeping her in for a few weeks with antibiotics & steroids. I was mostly upset that I was being poked & prodded & put on bed rest, I wasn’t dilated or contracting, at no point did it occur that I might be meeting my baby very soon… I was only 30 weeks, what did a baby even look like at that size?
My hospital doesn’t deliver babies before 34 weeks & doesn’t have a NICU, so I was being transferred to a bigger one about 45 minutes away. My contractions started in the ambulance, except the paramedics assured me I wasn’t in labour. Once at the hospital the emergency nurse quickly called the OB who confirmed I was 3cm & my contractions 2 minutes apart. “You have tested positive for an infection called Chorioamnionitis, it’s caused by your water rupturing, both you and baby are in danger & she needs to come out now.” I was taken to the birth suite where I was 7cm & too late for an epidural. With every contraction I cried & begged them to make it stop. I was sure I was going to die. Brad held my hand & I was so grateful for him but I wanted my mum more than ever in that moment. Just after midnight I needed to push & she was born at 12:34am, weighing 3lbs 7oz & crying vigorously.
She was taken to the NICU after they let me hold her for about 30 seconds. Due to COVID, we couldn’t go into the room together so I met our baby alone. She was tiny, on CPAP covered in cables & tubes, she was being given antis for the infection. I could barely even look at her it hurt my heart so much, I asked to be taken back to my room. I held her on day 3 & Brad on day 5. My first time holding her I listened to a family say goodbye to the baby next to her with only a flimsy privacy screen between us, & Brad’s first hold the baby on the other side coded. We were traumatised & terrified of what we would see/hear every time we walked in. We alternated seeing her & felt heavy when we left every day. I struggled with my milk supply & the lactation consultant made me cry about it. I laid in the dark every night pumping, crying for the baby I didn’t have. She wasn’t mine, she belonged to them.
She was thriving & everyday she improved. After 2 weeks she got moved to our local hospital, she came off CPAP & out of the isolette, we could go in together & finally be involved with her care. We woke up on Christmas Eve excited to see her, the nurse said she could have her first bath. Before we headed in I got the worst phone call of my life. Winter had an infection in her stomach that potentially required surgery & was being transferred, we needed to head in urgently. I didn’t understand, she was fine when we left barely even 12 hours ago? We raced in and I cried the whole way. I walked into the Special Care Nursery to see her bed surrounded by nurses who looked like they were going to cry, machines everywhere, cords all over her. We followed them to the next hospital, her third one where she was put back on CPAP & back to NICU. She had developed Necrotizing Enterocolitis, an infection that causes her intestinal tissue to die. The doctors kept telling us based on her X-rays they expect to see an extremely sick baby, except Winter doesn’t seem sick. She’s hungry, she’s as active as a prem baby can be, she looks fine. This scared me realising if we had her at home we wouldn’t even know that she’s deathly ill.
It’s now 4 days after she was taken to the new hospital, she’s off antis & eating again. I have no idea when she’s going to come home or what the future holds for us, but I’m waking up each day feeling more positive.
I didn’t even know babies could be born so early, I don’t know anyone who had a prem baby or a baby in the NICU. It’s a lonely, isolating experience. Brad & I wonder often why this is happening to us, why this is happening to our sweet girl. We will never know the answer but I think it’s made us all so resilient, I didn’t think I could ever be this brave but truthfully it’s because Winter is brave & inspires me daily. It breaks my heart that my mum & dad haven’t met her yet, she’s nearly a month old. But I’m so grateful to have found Miracle Mumma, I don’t feel so alone now.
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Yesterday I was reminded of the saying “Everyone wants to hold the baby, but who holds the mum?” I’m so thankful for NDIS and the support we are receiving for Jack - the funding allows us to help him to thrive. But his therapies are fortnightly, and in between that it is my role and my responsibility to provide that therapy to best help him develop and learn. Instead, I’m struggling to manage even the basics each day. And there really is no solution. Financially, I have to work. We can’t afford to live off the $130 I get from Centrelink each fortnight as Jack’s full-time carer. Yes, $130. My business doesn’t make much profit, but it is my passion and my creative outlet – I don’t want to give up something that keeps me grounded. We only have funding for 2 hours per week for Jack’s support worker, which is absolutely nothing when I think of how much support we truly need. Even if I have a day ‘off’ where my Mum has Jack, I'm either working as a nurse or on my business. Sometimes I wonder if I’ll ever ‘thrive’. But my biggest sorrow is the lack of time I have to just be Mum to my boys. I don’t want to look back on this fleeting time in Jack’s life and feel sad that I missed out on so much of his innocent childhood or regret that I didn’t have time to just sit down on the floor and play with him.
I don’t want sympathy or pity because our lives are not any ‘less’ - if anything they are ‘extra’. Even on the hardest days, Jack brings a joy and a beauty to our lives that only he could...his happiness through the fire is his trademark - it has quite literally changed my outlook from 'why us?' to 'why NOT us?!' We didn't choose this journey, but it chose us, and (while it's not bloody easy) I wouldn't change it for the world. But I do want others to understand, in some small way, what it means to be the parent of disabled or special needs child. Because before I was one, I had no freaking idea. And now, I want to give permission for others to share, to feel, to truly be seen. While the posts I write each day are mostly positive and I celebrate Jack’s differences so fiercely, there are still days like yesterday…and they are not uncommon. You’ll see us get back up again and keep going almost as if we are unaffected – but we simply have no other choice. These additional needs of our children don’t go away, even when we are quivering on the inside. As I write this, I'm mentally preparing for the emergency appointment and ultrasound we now have at the hospital first thing tomorrow, with a lump in my throat as I imagine how traumatic it will be. We get pretty damn good at adjusting to the storm and finding a new level of strength to get shit done, but it's ok to take off the brave sometimes. It's ok to be happy, hurting and healing all at the same time. It's ok to fall apart, to be scared and to ask for help. You've been brave for long enough. In the words of Brene Brown: "Vulnerability is not weakness; it's our most accurate measure of courage."
]]>Yet research shows us this is absolutely not the case. It is well documented that rates of postnatal depression (PND) are as high as 40% among women with premature infants, compared to 5-10% of mothers who give birth to full term healthy babies. And more than half report symptoms of anxiety and post-traumatic stress disorder (PTSD). The rates are way too high. NICU parents, especially mothers, are struggling with mental health, and we aren’t getting the help we need. We are slipping through the cracks.
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When parents are finally able to bring their premature baby home from the hospital, they receive little to no ongoing support. The baby will receive the appropriate medical follow up and their progress will be monitored for years to come, but the emotional and mental wellbeing of the parents is often forgotten and neglected. As a parent of two premature babies, this only exacerbated my feelings of grief, loss and isolation. When you are not offered or given access to any supports, you assume that you are expected to cope and to manage on your own. You assume there is something wrong with you if you can’t, that you are alone in your feelings. And with that comes shame.
Yet research shows us this is absolutely not the case. It is well documented that rates of postnatal depression (PND) are as high as 40% among women with premature infants, compared to 5-10% of mothers who give birth to full term healthy babies. And more than half report symptoms of anxiety and post-traumatic stress disorder (PTSD). A world-first study has also found that mothers who do not receive psychological help after giving birth prematurely are five times more likely to suffer depression than those who do, even eight years after their children are born. In Australia, more than 26,000 babies are born preterm each year. It’s not hard to do the maths and understand the extent of this psychological harm – the rates are way too high.
And it’s no surprise! A premature birth is typically sudden and traumatic, the weeks or months that follow in the NICU are fuelled by shock, emptiness, and uncertainty, and then the support network of the hospital can literally disappear overnight. You are finally home, and while discharge may seem to signal the end of the difficult times, sometimes it is just the beginning. The shock wears off and the reality sets in and you are on your own.
NICU parents, especially mothers, are struggling with mental health, and we aren’t getting the help we need. We are slipping through the cracks. Some may argue that the majority of NICU’s have social workers and psychologists available to perform an assessment, but this is not routine (and I know I certainly didn’t have the awareness or capacity to even acknowledge my feelings or ask for help during that time). And then what happens beyond the NICU? A routine six-week postpartum check-up you say? You mean the one that is often crammed into a 15-minute appointment with a casual ‘how are you doing?’ at the end, despite a long NICU stay and leaving my baby in hospital every day? The one with the tick box questionnaire that asks if I’ve blamed myself unnecessarily, or been worried or anxious for no good reason, or if I have felt scared or panicky for no good reason? The questionnaire that makes us once again question if we’re just meant to be feeling like shit because we’ve experienced something traumatic? Sadly, this is not applicable, and it is not enough.
These are damning statistics and they’re not improving, yet we are so far behind. It truly shakes me to my core. I’m so thankful that there are now online support networks and communities where parents can reach out to people who understand without judgment. But the Department of Health certainly have a long way to go in recognising this hidden emotional and economical cost of neonatal intensive care and supporting this vulnerable and sizeable group of our society. We need to be intervening earlier and appropriately screening the 10,000+ women in Australia who are at considerable risk of postnatal depression, to help them feel safe and supported at a time when they need it most. So why aren’t we?
Please share this post and tag your NICU friends - we need to be heard and raise awareness in order to bring change. Watch this space.
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I am STRONG, I am a NICU MUM.
]]>My first son James arrived quickly and unexpectedly at 30 weeks gestation and spent five weeks in hospital. He is now four years old, full of life and completely caught up to his peers with no long-term health effects from his premature arrival. My second son Jack was born at 34 weeks gestation after a closely monitored high-risk pregnancy with complications including a rare blood disorder requiring weekly infusions, an incompetent cervix resulting in prolonged bed rest, pre-term labour, pre-eclampsia and finally HELLP syndrome, which ultimately led to our boys early arrival. While his nursery stay was shorter, Jack faces ongoing health challenges and at 18 months old is still fed via a feeding tube for severe dysphagia (swallowing difficulties). Jack has spent most of his life in and out of hospital undergoing countless investigations and procedures, resulting in multiple diagnoses including airway abnormalities and chronic lung damage. Despite this, his smile shines brighter than the sun and his cheeky personality is infectious. Premature babies beat the odds every single day – they may be tiny but their fight is mighty. While my journey to motherhood wasn’t easy, my boys are my reminder to not only be thankful every single day, but to also be brave.
Among the 38 women was Cate Sherlock of Morphett Vale, who gave birth to her daughter Harper at 34 weeks gestation in June this year. After a pregnancy complicated by bleeding, Covid-19 and multiple tests due to ‘high risk’ antenatal screening, Cate’s waters broke at just 26 weeks. “They started talking about delivering my baby. I was so frightened. How could my baby possibly come now? I was in disbelief and shock,” Cate says. She spent 7 weeks in hospital on bed rest where she was only able to have one visitor. She spent this time researching about pre-term premature rupture of membranes and began advocating for her baby’s safety. Unfortunately, on the eve of 34 weeks, Cate’s placenta started to abrupt and she went into early labour, with Harper delivered via c-section the next morning weighing 2010 grams. “We spent 7 weeks in hospital. Noone can ever prepare you for leaving you baby in the neonatal unit. This was honestly the hardest time of my life.” Harper wasn’t able to coordinate her suck and swallowing reflex when she was born and had severe noisy breathing. It was discovered that she aspirates fluid into her lungs when she feeds and is now still fed via a feeding tube at 4 months old, with ongoing investigations, hospital admissions and outpatient appointments becoming a ‘normal’ part of her life. Cate wants others to know that “it’s ok to feel completely out of control or like you’re falling apart. It is ok to challenge the team and ask lots of questions. You are an expert in your child’s world and you are their voice, trust your gut and intuition. And be kind to yourself.” Cate has been experiencing severe postnatal anxiety and PTSD due to the pregnancy and birth. She is now seeing a psychologist who is a specialist in perinatal mental health and encourages everyone to reach out for support and to surround themselves with people they can trust.
Naomi Pudney of Aberfoyle Park had a similar experience with her daughter Mabel, who was born at 29 weeks gestation in May this year. Mabel finally went home after 7 weeks in the neonatal unit, but was re-admitted to hospital for multiple investigations just 2 weeks later after she stopped breathing and turned blue at home. “As the Mum of a premature baby you will feel ripped off - that you didn’t get a whole pregnancy, that you can’t take your new baby home with you, that you can’t hold and feed your baby whenever you like or have those ‘typical’ new baby days at home…but you are stronger that you could ever imagine,” says Naomi. Like Harper, Mabel faces ongoing health challenges and Naomi says their days are filled with appointments and the very real fear of visitors sharing their germs and making Mabel unwell. A simple cold can be life-threatening for these vulnerable babies and often ends in a hospital admission. “We are only just starting to feel like she is safe and the emotions of not being able to feed her orally are becoming our normal. I find it so clinical, but we finally have a content, smiling and thriving baby - we are totally in love!”
Jess Pate of Mitchell Park had quite a different experience after going into early labour at 23 weeks gestation with her first pregnancy. She was admitted to the birthing unit at the hospital and placed on strict bed rest, during which time the doctors discussed the possible outcomes of a baby born extremely premature at 23 weeks. Jess and her husband James were faced with the decision to either resuscitate their baby at birth or provide comfort care and let their baby pass soon after birth. “I had a gut feeling that bubs was ok, so we decided to resuscitate at birth,” Jess said. Just 5 days later, her baby’s heart rate dropped dangerously low and Jess was rushed to theatre, where Ollie was born weighing just 650 grams. Ollie faced a plethora of complications during his 136 day stay in hospital, one of which was a bleed on his brain which turned the dead brain tissue into a cyst. “The cyst has since diminished; however we are unaware of any long term effects this may have and may not know for a few more years,” says Jess. Ollie also underwent two surgeries for bowel complications and overcame a severe infection. “My biggest challenge was my mental health. I bottled up all of my emotions, I went into autopilot mode: sleep, eat, go to hospital, repeat. For the first 5 months of his life my fragile little baby had a whole staff of nurses and doctors on hand 24/7 who told me what to do and when. They were incredible, and I owe my baby’s life to them. But suddenly it was home time and felt like I was nowhere near good enough for him. I was diagnosed with postnatal anxiety and depression and even now a year later, I still feel those feelings creeping up on me but I thankfully have the tools to help me overcome them.” Ollie is now 16 months old and has struggled with delays in fine and gross motor skills but is quickly catching up. “He is a very happy, social, energetic and bright toddler with so much determination – a true little warrior,” says Jess.
Aldinga Beach Mum of two premature daughters, Danielle Walker, has witnessed miracles on a daily basis. Her and husband Roger’s first daughter, Lilah, was born five years ago at 27 weeks and spent 81 days in hospital. In February this year, their second daughter Mahlia was born at 24 weeks weighing just 420g after a pregnancy full of complications. Dani started bleeding on and off at just 5 weeks pregnant requiring repeated hospital stays. At 16 weeks she was diagnosed with placenta previa and at 20 weeks their baby was measuring extremely small with very little fluid around her. “We were told it was highly likely she would pass away in utero,” Dani says. At 23 weeks her family also had very difficult conversations surrounding their wishes should she need to be delivered. “We chose to keep her in utero, praying for any extra time for her to grow, even though the odds were against her.” But at 24 weeks and 2 days, there was nothing left to do but deliver Mahlia, and although she was extremely sick, her tenacious spirit was evident immediately. “We had an extremely turbulent NICU journey, that made our first NICU experience seem like a walk in the park! We nearly lost her on multiple occasions and Mahlia faced more challenges than anyone should ever have to endure,” says Dani. These challenges included severe infections, chronic lung disease, retinopathy of prematurity and multiple surgeries for bowel resections – one which occurred at just 9 days old in her isolette. After 130 days in NICU, Mahlia was finally able to go home on oxygen. “She was thriving and we were finally able to breathe, thinking the worse was behind us.” Unfortunately, after a marvellous 5 weeks at home, Mahlia ended up back in hospital with another bowel obstruction requiring emergency surgery and was once again fighting for her life in intensive care. Mahlia is still extremely unwell in hospital at 8 months old, facing the ongoing and lifelong challenges of short bowel syndrome. Despite their difficult journey, Dani radiates positivity, gratitude, and hope, saying “Love conquers all. The road ahead is tough and it takes a village of support to keep your head above water but there is no shame in asking for help. I am the proud Mumma of 2 micropremmie girls who I love more than life itself.” Dani attended the recent photoshoot on her own, a courageous representation of the ongoing battles associated with prematurity and the relentless bravery required by these parents and their little fighters to simply survive each day. Sadly, some parents never get to take their baby home from NICU: a raw but real possible outcome of premature birth that we don’t often hear about.
I am STRONG, I am a NICU MUM.
A project presented by Miracle Mumma
Photographer: Jones & Jagger
Event styling: Found Collective Events
Flowers: StemHaus
Signage: Ovela Designs
Furniture/Props: Found Collective Events & Old Refinery
#miraclemumma
www.miraclemumma.com.au
"As a Mum of a premature baby, you may be faced with the most difficult decisions and the most traumatic experiences of your life, but on the other side of the NICU, when you have your bundle of joy home where they truly belong, it’s all worth it and you’d do it all over again a million times just for them.” – Jess Pate
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Willow is just 6 months old yet Emma has signed up to run the 42km in a DAY! She has been out in her local community sourcing prizes for a raffle and selling tickets, while also training hard with a dodgy knee! Emma has so much passion for this cause and her determination is inspiring.
Follow the link below to donate and give premature babies like Hazel & Willow the best chance of survival:
https://www.runningforprematurebabies.com/fundraisers/emmabone
Fast forward to 2020, where we find ourselves thrust back into the world of NICU, this time after a 2 year battle with unexplained infertility, a horrendous pregnancy that saw me in and out of hospital haemorrhaging and a pandemic just to top it off. On valentine’s day, I was placed on bed rest in hospital, finding out that our baby was sick, small and did not have a huge chance of survival, either in utero or earth side. Every single minute of everyday in that 2 weeks was hell. I had to have daily scans as our baby was so growth restricted, they could not find a heartbeat with the doppler. I went to sleep every night praying our little miracle would hold on tight and make it even an extra day. There was much discussion around whether to take her our or not, but on the 27th of Feb, the choice was taken out of our hands when I went into labour.
Our tiny miracle Mahlia Violet was born at 24+2 weeks weighing only 420g, again via emergency classical C-section. She was extremely small and extremely sick, but she had fight and determination in her that knows no bounds. We had an extremely turbulent NICU journey with her, that made our last experience seem like a walk in the park! We nearly lost her on multiple occasions and Mahlia faced more challenges than she should have had to endure. The care and specialised equipment required to keep her alive would now be in the millions and we are beyond grateful to live in a country where we have access to such healthcare!
After 130 days, Mahlia amazed all those around her and made it home to her big sister and we were finally a family of 4. She was thriving and we were finally able to breathe, thinking the worst was behind us. The universe then said, “hold my beer….”
Unfortunately, after 5 glorious weeks, disaster struck, and Mahlia ended up in emergency in severe pain, with a suspected bowel obstruction. She was transported to WCH and ended up having emergency, lifesaving surgery, for an obstruction and consequent volvulus, a complication from her early surgery for a perforation caused by NEC. Never in our wildest dreams did we think that we would be faced with losing our baby again and watching her fight for her life. She was an extremely sick little girl and we were thrown into the world of PICU, specialist care and now reside in Rose Ward with no end in sight at this stage. Mahlia has lost all of her small bowel and will face lifelong challenges moving forward. We are living a nightmare stuck on repeat. Today Mahlia is once again suffering septicaemia from a staph infection in her line, along with a urinary tract infection and rhinovirus - she is very unwell at the moment but she continues to fight the good fight. Her strength and determination is inspiring to say the least. She is certainly made of tough stuff and we witness miracles on a daily basis.
After our first premature journey, we thought that world was all a distant memory. To face it all again with Mahlia, this time amplified beyond belief, has really opened our eyes to understanding exactly all that comes with this journey. It really lights a fire to want to give back in some way, to support others babies who also need to fight to be here.
When I found out about Sophie’s journey and Running for Premature Babies, I knew that there was a way I could feel like I was doing something positive, in amongst the chaos of our current situation.
I have been stationary for over a year (since falling pregnant and having complications from the get-go) and running has never been my forte. I have knees that are worn down to bone on bone, I have asthmatic lungs that burn, I have boobs full of milk in between expressing and I didn’t even own a pair of running shoes! Watching both my daughters conquer all they have endured, I thought I really have no excuse not to sign up and commit to clocking up the 42kms, even if it kills me in the process, if it means raising some much needed funds to support other premature babies and give them the best chance at life.
I am incredibly proud that my hubby jumped on the band wagon too and decided to give it a crack as well as my sister-in-law and a few friends. The generosity of my fellow runners and my sponsors fills my heart to the brim! It is almost laughable, the 2 most unlikely “runners”, in the midst of a current crisis, committing to hitting the pavement in November! But if these babies can fight this hard, then so can we!
We thank you Sophie, for creating the Running for Premature Babies Marathon, enabling us to give back after we have received so much of this specialised care for our beautiful girls. The premature community is as amazing as the tiny miracles themselves!"
Yesterday, on the first day of World Premmie Awareness Month (and amongst all the current stress) Dani went out to log her very first kms.
"So my feet hit the pavement (like an elephant). The first 100m I said I can do this, its only a km. After about 250m my lungs started burning, I was puffing like a dragon and my everything hurt! It was in the middle of the day too and it was HOT. Hahah not the smartest idea.🙈 I got a few concerned stares from onlookers as I passed them (they could hear me coming a mile away). But I was determined, all I had to do was think of Mahlia struggling and my feet kept going! 🏃♀️🏃♀️🏃♀️
As the distance clocked 1km (so I thought) I collapsed in a heap. My legs shaking, my lungs resembling a premmie's chronic lung disease and I honestly thought I was going to pass out or vomit or maybe both!!! 😳🤢🤯
I switched my strava app off and headed back to the hospital at a very slow walk. (I only want to clock the running distance). The security guard, who knows me well, was extremely concerned as I walked in 🙈🤣 and when I got back to the ward some of the nurses were like "omg are you ok what's the matter?" In between my gasping for breath and red face I said "oh just clocking up my first km at a run! I was broken but also extremely proud!! 🏆🏅
The absolute funniest thing about it was messaging hubby and realising my distance was set on MILES not kms 🤣🤣🤣🙈🙈🙈🏃♀️🏃♀️ so I actually managed to RUN 1.6km!!!!! No wonder it felt like the longest km of my life!!!!!! For those of you who use "run" and "fun" in the same sentence...you are bloody mad!!!!!!
Thank you to every single one of you who have sponsored me so far. I am excited to see just how far I can go, raising such important and life saving funds for those babies in need. Many people ask us "is there anything we can do to help?"
YES!!! You can not give us what we need, which is for Mahlia to be better, but you can make a huge difference in the lives of babies like ours by sponsoring me in this brutal 42km run 😳🏃♀️🏃♀️🏃♀️
Please follow the link below and click on donate. It would mean the world!! 💜🙏
https://www.runningforprematurebabies.com/fundraisers/daniellewalker/premmie-marathon-challenge
Follow Mahlia’s journey on Facebook Mahlia Violet – Our Miracle Micro Prem
A beautiful account from a Premmie Mum of the journey through NICU.
]]>We ring the doorbell prior to entering the NICU. We ring a doorbell to ‘visit’ our baby. If that doesn’t set the tone for the journey ahead, I’m not sure what will. The door opens and a smiling Nurse greets us. We have to wait a minute before getting close enough to see her because they are ‘just finishing up’. ‘She is just beautiful’, another Nurse says. Is she? I got to hold her before she went to NICU. She was wrapped in a plastic poncho and multiple towels, with just a big enough opening that her tiny, tiny head was visible. Her face already covered in tape to secure the tube in her nose; the Doctor manually ventilating her. The shock still clouding my mind did not allow me to see her beauty. As for my husband, having missed her birth, He was yet to lay eyes on his beautiful girl. “Come and see your baby”. ‘Yours’. She felt so far from being mine; apart from knowing that I had given birth to her a couple hours earlier, she did not feel like mine. We approach her isolette. A ventilator, our little girls lifeline, sits to the left and an IV stand with no less than 5 different infusions on the right. There she is. She lay under a clear plastic sheet to keep her warm, her skin red and shiny. Her leg moves and it almost scares me. She moves again, her foot retracting each time it touches the plastic sheet, exploring her new ‘home’. She is a real baby and she is ‘mine’.
I enter the room and walk straight over to her cot. My beautiful girl. I lean over her cot and I kiss her head once, twice, my heart warming. I missed you, my baby. She is awake, moving her head from side to side, searching for my breast. “Would you like some milk, my beautiful girl?”. I wipe her eyes and mouth, swap her oxygen saturation probe to her other foot and change her nappy. I can tell she did not poo overnight, we have been waiting 3 days, her little tummy rounded at the side. I pick her up, her head resting on my shoulder, wriggling around, still searching for my breast. I give her bed a quick tidy and lay out her swaddle ready for later. Her nose nudges my breast, then her mouth opens and attaches. I feel my milk let down, her jaw moving and I can her gulping. Gulping, gulping. “Take a break beautiful girl”. Gulp, gulp, gulp. I break our latch and sit her up knowing her oxygen levels would soon be dropping. I know her, my beautiful girl. The monitor alarms insistently, the Nurses and Midwives walk over briskly. “She just got a bit carried away feeding, she is still nice and pink”, I assure them. I swaddle her, tuck her back in to her cot and make sure she is settled. On my way out, I thank the Midwife for caring for her. “I should thank you, you have done everything for her” she responds. My baby. My ‘real’ baby. She is beautiful and she is mine.
- April Connor, Mum to Sophie ♡
]]>Looking back on my high-risk pregnancy with Jack, I'm not sure how I survived. Sounds dramatic, right? But honestly, I was drowning in a very raw and helpless fear each day. I was an anxious mess...desperately hoping for the best but constantly expecting the worse; a person I don't even recognise now. I remember everyone saying that I was so positive and carrying it so well, but on the inside, I was falling apart. There wasn’t a moment that I felt comfortable or safe - I was living in a constant state of nerve-wracking worry; my mind in overdrive as I played the 'what ifs' over and over again in my mind. Every single day I fought back tears as I second guessed myself. I not only worried that I would lose my baby, but I was convinced that every symptom was the beginning of the end. A sharp pain was my stitch failing, a headache was the beginning of pre-eclampsia, a tightening was the start of labour. Nothing was innocent, nothing was simple. This continued every day, every waking hour, even my sleep brought bad dreams…it was relentless. And on top of this, I had an overwhelming responsibility to notice if and when something was wrong, to prevent the worst, to keep our unborn child safe. The guilt of having James prematurely was constantly at the surface reminding me how quickly things could go wrong, how it was my role to read my body and the signs, how I was the reason that these concerns were real and we could never have a stress-free pregnancy. And sadly, while I absolutely loved being pregnant, I could never truly enjoy it – in fact, I found myself wishing for it to be over.
As most of you know, we've had our fair share of hardships and have suffered a great deal of loss, but I can hand on my heart say that our high-risk pregnancy with Jack was one of the toughest challenges of all. I reached boiling point. More than even my closest family and friends probably realise. While in hindsight there’s so much I wish I could go back and tell my pregnant self, I also know that in that moment, nothing could have eased my mind. I’ve had so many of you contact me over the past year asking how I did it….each of you saying the exact same thing - “I am so terrified that something will go wrong” – and as I try to think of something I can say to reduce the fear that’s crippling you, the trauma that I’ve been burying deep inside instantly comes bubbling to the surface. So I’m not going to sit here and tell you not to worry, that everything will be ok…because I can’t promise you that. In fact, I wish someone had told me that it wasn’t fair, instead of telling me that it would be ok – an acknowledgement of my feelings; anything to make me feel less irrational. Because the reality is, you probably won’t feel ok until your baby is safe and well in your arms. And even then, you may take some time to let go of the angst you feel. But please know that these emotions that consume you every day are not only totally normal, they are warranted. What you are experiencing is fucking tough, and you are reacting naturally to that. Allow yourself to grieve; to feel sad and sorry for yourself; to want it to be different. Allow yourself to take it one day, or even one hour, at a time; to remember why this is so difficult for you; to remind yourself of how far you have come. And while I want to assure you that you’re absolutely NOT alone, I understand that even this doesn’t help when you’re in the thick of it. But I do know all too well how you’re feeling, and I hope that brings you some comfort.
Our high-risk pregnancy damn-near broke me, so much so that it confirmed our decision not to have any more children. I seriously underestimated how stressful it would be the second time around following the trauma of our past experiences. I thought I would be prepared; that I had the knowledge, experience and strength to get me through – I’d already done it once, right? I was so wrong. But as with any hardship, it taught me so much and it became my story. I found a strength within me that I never knew I had. I battled with emotions I never had before. I found hope when it seemed there was no hope left. Above all else, I didn’t quit. And because of that I gained so much more than I ever dreamed. So while there’s nothing I can do to make the anxiety any lighter, I can assure you that fighting this bloody hard for something not only makes you grateful, but it makes you a freaking warrior…and that’s something that can never be taken away. Your fragile pieces may never fully glue back together, but I promise you that one day, you will feel whole again.
]]>Dot Winifred Georgiou was born on 10th June 2019, surrounded by the love of her Mum Suzie, Dad Kristan and big sisters Elsie & Hattie.
At just a week old, Dot was admitted to hospital with hypothermia. Suzie wrote: “there is no reason behind it as yet but all major infections have been ruled out. She gave us all quite a scare. Little Dot is not yet able to maintain her own temp and needs our skin to skin cuddles to bring her back up when she drops…lucky the best thing to do is sit with a sleepy newborn and cuddle the day and night away. Dottie you may be our third but you have certainly got everyone’s attention little lady.”
In October 2019, at almost 4 months old, Dot had further investigations and tests at hospital for failture to thrive, floppiness, sleepiness and developmental delays. And then the devastating news came that Dot had been diagnosed with Mitochondrial Disease (Mito). “There is no cure or treatment and her little life is prediced to be short as she has shown signs of it so young.” While the family awaited further genetic testing to determine the specific details on the type of Mito and how it would affect Dot, they inspired others with their courage, telling their friends and family that while “we will never be ok again…our only hope is that Dot knows happiness and love for her life.” Their desire to protect all three of their girls from sadness and what was to come, was truly heartwarming at such a heartbreaking time. They encouraged everyone to “please love your children with every beat of your heart.” The community heard; they rallied; they prayed.
Just days later, ‘Team Dot’ was created: a large group of family and friends who came together to #DoItForDot and participate in The Bloody Long Walk. ‘Team Dot’ raised a staggering $38,000, each and every sweaty step of the 35 kilometre walk helping to fund research into desperately needed treatments and cures for this devastating disease. “I sat in complete shock at the donations, the walking team, just name after name of our friends, our community, our village for our girls. Then I cried. I’ve been part of fundraisers before, I love a good rally of the troops, but it’s never been personal. It’s never been for my home. For my child. For my Dot. For OUR Dot. When we found out Dot has Mito in our meeting we were asked if we had support. I remember saying with pride that we were from Lobethal! There is something so comforting to know it’s not just words, but truly people who are 'here if you need'.”
Suzie continued to share their story openly and honestly with their tribe in the hopes of bringing knowledge and understanding. Dot was on a strict 3-hour feeding schedule via a feeding tube. “Feeding Dottie is like being on a newborn routine. It’s strict. It’s not feed and go. It’s trying with a bottle, under 30mls left it manually goes through her tube, over 30mls the machine comes out. Throw in another child waking up here and there through the night, Dot waking at 4am for chats which we welcome with loving arms and bring her into our bed for snuggles. I’m not complaining! Not one bit! We wake up happily and do all of them.”
And then Dot started to develop. She learnt to pull her tube out and this ability was an ironic win! She was giving smiles, even if once a day. She began ‘chattering’ away. She reached 5kg. The relentless appointments were actually encouraging as the specialists discussed early intervention and supports through NDIS. “And all I heard was TIME, these things are needed because we might get TIME! Music to my ears!! I’m in no denial, I know the outcome, we still don’t know what type of Mito she has as yet, I know there is no such thing as a ‘good’ one, but to get time with Dot is what we need. We have an incredible team of doctors that believe in hope and being proved wrong.”
But in late November, Dot began to lose some of her strength. “Unfortunately the bumbo has been put away again. Reality is for 30 seconds she must have balanced before flopping and she’s never done it again, not even close, can’t even get her into it actually. She still needs support like a newborn. And support her we will”. Dot was approved for supports such as a disability pram, highchair and bath seat, which allowed her to be safe, comfortable and included. Cuddles became few and far between, as her family made the most of the smallest little moments when Dot would nuzzle in. “Dot really doesn’t like being held. It’s something that’s taken me some time to adjust to, because it’s in our nature to hold our children when they are upset or hurt. But Dot simply wants her space.”
In late December, as fires tore through their home town, Dot was admitted to ICU. “Long story short, she’s had several ‘turning blue’ episodes but is in the best place and being monitored to work out what’s happening. We received some wonderful news about her Mito this week, but it’s now too hard to celebrate it as our town hurts and she’s taken a little detour. We will wait until we are out of the woods to happy dance.” Sadly, Dot spent her first Christmas in ICU (with a short day pass for Christmas lunch), but her family as always - along with the hospital staff - made sure it was special for the girls. “It came without ribbons. It came without tags. It came without packages, boxes or bags. Maybe Christmas, he thought, doesn’t come from a store. Maybe Christmas perhaps…means a little bit more” – Dr Seuss.
A couple of days later, Suzie shared their hopeful news: “Dot has a rare Mito disease called EARS2, of which she is 1 of 15 known cases in the world. In a very brief nutshell, they predict she will either develop a bit over the next 6 months, remain stable or decline in her abilities, then once she reaches about 1 years old she should stay consistently like that for her lifetime. We can’t predict what her lifetime is, but 12 of the known cases are alive, one case very similar to hers is 6 years old! A gift of TIME! Where to from here? We plan to throw everything into improving her abilities for the next 6 to 12 months particularly. We are under no disillusions, her floppy core has not improved and we still carry her as a newborn. We don’t expect this to change, but hope to work on her arms, legs and mental abilities. We've been able to start talking to the girls more about Dot being disabled for her life. It's nice to not focus on preparing them for the possibility of the end, rather just focus on the now whilst they are young, and deal with anything major down the track as they grow older and are able to understand more. The wonders of the gift of time.”
As the Georgiou family welcomed the New Year, they embraced positivity – something that always shone through in Suzie’s posts and continued to inspire everyone they know. “Goodbye 2019! You were a rollercoaster of happy times with the arrival of our Dot Winifred, and absolute saddness. But to be honest when we first found out about Dot's Mito, just making it to Christmas seemed unachievable, and here we are! We know 2020 will not be easy, our little boat we've smooth sailed through our lives so far is definitely on it's own uncontrollable path. It's not the path we had planned, and certainly not the path we wanted. But its Dot's path, so it is exactly the one we will go through together. 2020, I choose for you to be a POSITIVE year.”
Over the following two weeks, Dot continued to have frequent episodes which meant more visits to hospital. The episodes weren’t caused by a virus, and an MRI was performed to determine the future. Suzie’s next post was crushing. “The gift of time was not meant to be. It was the hospital trip we feared the most, I felt it the moment I stept out of the ambulance. Dot has declined rapidly, confirmed by an MRI today that the Mito has spread to all white matter in the central brain controlling her bodies communication, and to her nervous system confirming why we haven’t been able to hold and touch her recently. We knew it was not looking good, but needed the report to confirm that time will not allow her to regain anything. She lost her smile 2 stays ago, the next her eye engagement, and now we prepare to bring her home from what will be her last time in hospital. She is not able to be on any incline position so any car travel is out once we get her safely home, with permission granted to hold her flat in the back seat for her final ride home. It is understandably tough for Elsie and Hattie who now know Dot will die soon. Both were able to raise this topic in their own way this stay with us. They now know she will live in heaven and the invisible string of love will link them to her. We are broken. No amount of time will ever be enough, but we are thankful for every minute we did receive from her first visit to hospital at 9 days old. We know we were so close to losing her that night, and have created memories which could well have never been. Dot will now decide when her time is, as we keep her as comfortable as we can, surrounded by the only thing we have been able to give her for Mito, love.”
The family spent the next two weeks soaking up their beautiful Dot at home. Suzie continued to post the most beautiful, unforgettable moments, such as snuggles with all of her girls – something she asked that we never take for granted. “Any photo you see of us holding or touching Dot with a big smile on our faces, it's not because we are strange at a time like this... more that joy from being able to enjoy them now she’s getting moments where she can bare it, even if just for a few minutes.” She wrote about strength; each post bringing tears to my eyes as her words were full of such heartache and such courage, but oh so much deep, overwhelming love. “Strength. It's a comment we've received a lot over the last few months with Dot. But to be honest, it doesn’t feel like there has been any other option. What choice do you have against a diagnosis as brutal as Dots? No chance to fight. No chance to slow it. Nothing to do but watch, love and hope? And how we hoped, we hoped for a few weeks when we first found out, and got it. Then we hoped for a family holiday, and got it. Then we hoped for Christmas... but the hope even left at the last hospital trip, and all that's been left is to prepare for something we never want to happen. And we don’t want it, but at the same time, we have to watch slowly each moment leading up to it…But strength. It's the only option when you choose to have a family of three children. Strength to be with Dot in these times for her, but then to keep the magic of childhood in our home for our big girls.”
And then came the unimaginable news that you can never prepare for; the news that no parent should ever have to bear: “Yesterday was the day, we felt it the moment it started, and Kristan and I were with her and supported her all day together. She was peaceful, however tough it was on both of us and will continue to be. Forever a family of five, always parents to three beautiful daughters. Our beautiful Dot Winifred Georgiou. 10 June 2019 to 30 January 2020.”
I feel so blessed to have known Dot, to have heard her story, to have shared her fierce journey. Dot has inspired individuals and communities. She has given perspective and hope. She has forever changed the lives of so many and my goodness has she made her mark on the world! Dot, you are so loved.
One thing that shone brightly through all of Suzie’s posts was their hope for the gift of time. And now, the Georgiou family’s biggest wish is for other Mito families to get the opportunity of time. “We have had so many kind people ask us what we need. Please consider a donation to the Mito Foundation in loving memory of Dot.” You can donate via the link below:
https://fundraise.mito.org.au/donate/
And finally, I want to share something that Suzie wrote personally to me that I desperately hope will stay with you as you go about your day to day life: “The waiting is the best gift, waiting with her and just being completely with her. I wish I could wait forever…I hope her life brings perspective to others, to cherish their time and choose happiness.” Let Dot be your daily reminder to just be.
Fly High Dot Winifred. We will never stop speaking your name.
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The NICU nurses constantly told us about the “honeymoon period”. I thought “no way, she’s such a trooper, she won’t go downhill”. But boy was I wrong.
Elodie then had 5 positive blood cultures. Infections in her blood, eyes and lungs which cause her lungs to collapse. She was so unwell. At this stage they also thought that her bowel had died, and warned us that surgery was on the cards. Our tiny 600g baby was going to be operated on. An operation we were told that only 1 in 3 babies make.
Thankfully, the surgery was held off. Elodie fought off her infections and her lungs were back to normal. But the infection had re opened a large PDA. New course of paracetamol to close it up.
A few months had passed, and Elodie went floppy & lifeless. The days leading up to this, she wasn’t herself. She was agitated, sooky and didn’t want to be bothered, but also didn’t register when people were touching her. She was electively intubated after being on cpap for about a month.
On the 7th of October, just shy of being 3 months Elodie had surgery on her bowel. They found it was stuck & twisted. Thankfully she didn’t need a stoma bag. ✂️🏥
Elodie spent 112 days in the NICU. Where our nurses became our families and many friendships were made.
After surgery Elodie went back to her normal self. We started breast contact, and she was stable enough to go on high flow for her oxygen. Then came her first bath at 3 months old, and moving into an open cot!
2 weeks ago Elodie graduated NICU and was moved down to the Special Care Nursery. We have established bottle feeding. She loves her cuddles. However she keeps dropping her blood sugar levels. 🎓
Problems Elodie now has is chronic lung disease, bone disease, stage 2 ROP in both eyes, liver problems, a slow thyroid & is being tested for cystic fibrosis once she hits 3kg. Genetic testing will also be happening in the coming days. She has also had 13 blood transfusions.
Elodie is now 4 months old, 2.7kg & wearing 00000 clothes. We are hoping to have her home before Christmas! 🎄🎁🎅🏼🤶🏼
Thank you for reading our story. I look forward to learning about your premature little ones or sick bubbas and offering as much support & advice as I can. ❤️🧡💛💚💙💜💖
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Thankyou to Miracle Mumma Tenielle for sharing your story and helping to raise awareness of pre-eclampsia & premature birth.
'Vintage Floral' Premature Baby Milestone Cards available at https://www.miraclemumma.com.au/collections/premature-baby-milestone-cards ♡
]]>One in ten babies are born too soon and premature birth remains the leading cause of death in children under five – it is more common than you think and it is on the rise. It can happen to anyone...it happened to me.
"I have come to learn that premature families are among the strongest families I know. Premature babies may be the littlest but they are also the toughest newborns, they never give up and they are resilient – they beat the odds – just like their parents.” - Amy Purling (an excerpt from the Sunday Mail)
📸 A Mother's Love - Photographer, Doula, Filmmaker
1 in 10 Posters by Miracle Babies Foundation
My sons James and Jack were both born prematurely at 30 and 34 weeks gestation, respectively. James arrived quick and unexpectedly when my waters broke and I went into spontaneous premature labour, despite the doctors best attempts to delay it. With each contraction, our little boys heart rate was dropping and he was in distress, an eventually a ‘Code Zero’ was called on the
overheard speakers at the hospital. Within seconds I had about 10 people surrounding me asking me a million questions. My husband Scott was thrown a pair of scrubs and I was being pushed out the door to theatre. I will never forget this feeling. It was like I was in a movie. I had the anaesthetist running beside me telling me I needed to have a general anaesthetic. I kept saying ‘no, I’m having a
spinal block, I need to be awake’ and his stern face saying ‘Amy, there’s no time’. I was shivering and crying so hard I couldn’t control it, and as I was transferred onto the theatre bed, I was having a contraction so strong I actually felt like my little man was on his way out and they were too late. I had arms in each direction and one nurse said ‘I’m here purely to hold your hand’. Scott was nowhere to be seen – he wasn’t allowed in the room due to the urgency and general anaesthetic. I was still awake when they were splashing betadine onto my tummy. The anaesthetist was telling me to keep my eyes open as long as I could, and I knew if I closed them one second too early I would feel them making the incision. When I eventually closed my eyes, I honestly didn’t know whether my baby boy would survive. James was born weighing just 1.5kg and was taken straight through to NICU for treatment. I didn’t get to hold him until about 20 hours later but in that moment nothing else mattered but fighting for my little boy. My birth with James was extremely traumatic, and I still feel a lot of shock, guilt and heartache surrounding those events. James was born black and blue, and was quickly diagnosed with a rare platelet disorder. He required life-saving platelet transfusions in his first 48 hours of life from a tiny pool of matched donors. James spent 5 weeks in hospital growing and learning to feed. We watched him fight for his life inside a plastic box, buried underneath cords and drips and attached to a number of scary machines. We held him for just 1 to 2 hours a day, and only when he was strong enough. We watched him have multiple blood tests, receive transfusions, oxygen, medications and be fed through a tube which went down his nose and into his stomach. The days were long, unpredictable and utterly draining. It felt unnatural and went against every motherly instinct in my body. Nothing could have prepared us. In just the first 48 hours of his life, James had
already endured and overcome more hardship than I had in my lifetime. He is now 3 years old and has caught up to his peers, and thankfully doesn’t have any long-lasting complications from being born prematurely.
Jack was a little different. My pregnancy was high risk from the start – due to the rare platelet disorder we found with James, I was admitted to hospital each week for blood transfusions and ultrasounds at WCH under the maternal fetal medicine team. At 18 weeks pregnant I was found to have an incompetent cervix - I had surgery to have a cervical suture placed, was told to stop work and was placed on home bed rest. At 34 weeks I was admitted with pre-eclampsia and found to be in
pre-term labour. Jack was delivered via c-section (I couldn’t deliver naturally due to the blood disorder) but it was much more controlled and I was able to be awake this time – I feel as though his birth, although again not ‘typical’, helped to heal me in a way. He required a platelet transfusion at birth but otherwise did really well and was home after just one week in the nursery! Our complications have unfortunately been ongoing since then with Jack. He has a floppy airway and
unsafe swallow causing him to aspirate milk into his lungs when he feeds. He has had 7 hospital admissions for respiratory infections (one quite severe bout of pneumonia as well as emergency surgery for bilateral hernia repairs) in his short 6 months of life and is currently fed via a feeding tube. He has ongoing medical appointments and follow ups and is being seen by a number of specialists.
Being a Mum to a premature baby is a rollercoaster ride of ups and downs. Initially, it is overwhelming shock and grief…countless hours spent beside a humidicrib watching your baby fight to survive and leaving the hospital each day with empty arms and an empty heart. It is being faced with the painful possibility that you could lose your baby at any second - something no Mum should
ever have to experience. But with each passing minute, you slowly come to realise the undeniable strength and determination of a baby born too soon. You start to believe in miracles, and your baby is proof that they exist. You grow a support network of nurses, doctors and other premmie families inside those hospital walls who become your real-life superheroes. Although you are afraid and vulnerable every single day, you are part of something truly special. And as time moves forward, you gain perspective. Every single time you look at your happy and healthy baby who defied all the odds, you are reminded to be thankful. You are reminded to be brave. And you are reminded of how much you have overcome. Being a Mum to a premature baby is not something you ever get over, but with the help of the premmie community, it is something you get through.
I want other parents to know that they are not alone. Having a premature baby is extremely isolating but there’s a huge community of others who have been there before and who understand – and it’s a community unlike any I’ve ever seen. Premmie parents are true warriors and there’s a whole army
of people standing beside them inside those hospital walls each day. Reach out and get support. It’s not something you have to experience alone and it’s ok to ask for help.
We will never be able to express our gratitude to the incredible team of doctors, nurses and midwives at the Women’s and Children’s Hospital. They are angels on earth and they saved our boys lives.
View more articles below which feature our story:
James was born extremely bruised and swollen with a petechial rash caused by broken capillary blood vessels. He was found to have a severely low platelet level which was labelled as life-threatening. He immediately received a transfusion but his levels didn’t rise as expected. This is when the doctors started testing for NAIT and discovered that James required specific platelets. Finding these rare platelets was a bigger task than expected - platelets have a short shelf life of 3 days and there were only a small number of matched donors in the country. Thankfully, a donor bag was sent over on ice from Melbourne immediately. They divided this one donor bag into three and gave James a transfusion as soon as they arrived. Over the next 24 hours he received all three transfusions which were enough to raise his platelets to a ‘normal’ level, but this also meant they had used the supply if they needed to transfuse again. They found another donor on the registry in Sydney and asked them to kindly donate that day in case they were required, and they were again sent over on ice immediately. Thankfully, James continued to thrive from this day forward, and despite suffering a small grade 1 brain bleed, he has had no long-lasting complications from this condition.
They say the recurrence rate of NAIT is very high (88-97%) with progressively more severe manifestations in subsequent pregnancies. Thankfully, when we found out we were pregnant with our second child, we were aware of the condition and a plan for treatment was immediately put in place. Every week from 19 weeks pregnant until delivery, I received 5 precious bottles of Intragam (immunoglobulin), a product made from human plasma & obtained from approximately 1000 voluntary blood donors. The doctor explained that these antibodies flood my blood and ‘trick’ my body to stop creating the specific antibodies which attack the baby’s platelets. Each infusion cost almost $8,000, a total of approximately $130K for the pregnancy to keep my baby safe and protected in the womb. This process included countless needles, a weekly 5-hour hospital admission and close monitoring of baby to check for any undesired effects in utero. And while the treatment is aimed at preventing my body's immune system from attacking our baby's platelets, there was still a small chance it wouldn’t work & our baby would require rare platelets at birth, as James did.
Eventually, after an anxious high-risk pregnancy, it was time to deliver our baby boy. On 6th May 2019, Jack Henry Purling arrived at 34+5 weeks gestation weighing 2280g and 44cm long, after Mum developed pre-eclampsia. His delivery was via planned c-section (due to the risk of internal bleeding with labour and contractions), and thankfully he didn’t have any immediate signs of NAIT. His first platelet level came back lower than normal but not low enough to require treatment – it felt as though everyone involved in our care could finally breathe a sigh of relief! Over the next 24 hours however, his levels started to drop quickly, and his blood work indicated that his platelets were being destroyed and his body was trying hard to compensate. It was decided that Jack would receive a platelet transfusion, again from a kind-hearted stranger who had been called and asked to donate especially for Jack in the days prior to his delivery. After his transfusion, Jack’s platelet levels slowly started to stabilise, and after a week stay in the nursery, he was able to come home with us on the hospital’s early discharge program.
We will never be able to truly express our thanks to the team of nurses, midwives and doctors at the Women’s & Children’s Hospital in Adelaide for their care, compassion and dedication during a frightening time for us. Over the duration of the pregnancy, birth and nursery stay, we formed a support network within those hospital walls who became our family and our real-life superheroes. They invested so much of themselves into our journey while making us feel safe and reassured…and for this we will forever be grateful. It truly is a place where miracles happen every day.
And as I sit here writing this with tears streaming down my face, surrounded by my two precious little NAIT miracles, it is not lost on me how our story could have been completely different. I want to say a personal thankyou to all those who donate blood, from the very bottom of my heart. None of this would have been possible if it weren’t for the generous and selfless donors who took their time to save a life – and not just any life, but our son’s lives. Our difficult journey has been made so much brighter by the goodness of people we have never met and we will forever be in their debt. You do not have to be rich to be generous.
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Thankfully my midwife saw my face and managed to buy us some time so I could process what was happening and Scott could make it to the hospital. I called my birth photographer Beck from 'A Mothers Love' and prayed she could also be there. The next hour went by quickly as I was prepped for theatre, and then as soon as Scott & Beck arrived, time stood completely still. We were in my room literally waiting for the call that my boy was going to enter this world. Even though I knew this moment was coming, I could never fully understand or prepare myself for how I would feel. Even now I can't really describe the mixture of emotions as we sat in that room waiting. I felt like I was living a dream - it just didn't seem real!
The call came and I was wheeled around to the theatre holding room. I was a nervous wreck with a million thoughts running through my mind, until I was wheeled into the theatre room where Dr W and Dr C (our neonatologist) were waiting. I felt an immediate sense of calm. I remember saying to myself 'Amy, you've got this. Your team has got this.' I had everyone there I needed and above all of that I had trust. My doctors were some of the best and they also had compassion - something quite rare in healthcare these days.
The anaesthetist popped in my spinal block and it was all go, but with absolutely no urgency! I remember thinking there were so many people in that room but everyone was so relaxed...Dr C was having a good old chat to my midwife in the corner trying to guess what baby's name would be, the anaesthetist was putting drops of water in my mouth cos I was dry AF, and Dr W was casually teaching his assistant how to cut open my abdomen!! For some reason all of this put a smile on my face. Scott and I just kept looking at each other with a mixture of excitement and fear, but as soon as we heard a little cry from behind that curtain, we both started crying. I heard Dr W say 'oh look at him, he's just perfect' and someone else said 'he's got so much hair' - all of them with such sincerity. They dropped the curtain so we could have a peek of our precious little bundle, and then Dr C took over and said 'Hello Frances Purling!!' 😁 I quickly told him that baby's name was Jack Henry and they proceeded to do his initial checks, where Scott was able to cut the umbilical cord. He was then wrapped up like a burrito and brought over to me for my first cuddle on the table. He was the most perfect burrito I had ever seen, and the tears came hard and fast.
The first thing I thought was 'he's so big', even though he was so small! But compared to James he had so much chunk - his cheeks were squishy. My next thought was 'he's so purple' - I said to Dr C 'I know we are desperate to give me a cuddle but did you want to fix this situation first' 😂 Scott and I just stared and took in his features, before Dr C agreed he would quickly give Jack a suction & puff of oxygen before bringing him back again for another cuddle! I really couldn't believe it was happening - it was no longer a dream, this was REAL. He was here, and he was healthy! It felt as if a weight was immediately lifted from my shoulders and I could breathe again for the first time in 6 months.
They then took Jack away to NICU to get him sorted while Dr W finished stitching me up and removed my cervical suture. The room was now empty, Jack had certainly stolen the show! I just remember laying there smiling feeling so content, when Dr W came around the curtain and said 'Congratulations, this pregnancy was extremely difficult...I don't know how you did it, but you did.' And this is coming from an experienced high-risk MFM doctor who sees it all. Wow.
Scott came back into theatre and told me Jack weighed 2280g & was 44cm long - even this blew me away! We were expecting a small baby but he ended up measuring in the 25th percentile! I was taken away to recovery where Dr C popped his head in and announced with the biggest smile that Jack's platelets were 120 - we had even won that final battle! In that moment the whole medical team breathed a sigh of relief. I even asked Dr W the next morning how he felt, and his first word was relief'. This man had invested so much of himself to our journey, and after seeing me weekly from 19 weeks, he had also become a friend. He must deliver a lot of babies, but I could tell he sincerely cared about each and every one. I feel incredibly blessed that he is the only OB in Adelaide familiar with NAIT, because I can't imagine I would have trusted anyone else.
Jack's birth story, in our eyes, was perfect. We couldn't have imagined anything more. Dr W apologised that I couldn't deliver naturally as I had always hoped, but I am no longer fussed. I honestly feel as though this experience healed us after an extremely traumatic birth with James. Everything I had grieved over the past 3 years was suddenly less painful, as though a few pieces of my heart had been glued back together. And I have the team at the Women's and Children's Hospital to thank - especially the nurses & midwives in HDU, and the knowledgeable Dr W & Dr C. Not to mention the incredibly talented Dr Yoong (from Ashford) who helped us to conceive against the odds. This baby wouldn't be here safely in my arms without all of you.
If you personally are ever doubting having another baby after infertility, loss, or premature birth, I hope our precious rainbow gives you the hope and the courage to do so. Yes, our journey was undeniably hard...there were days I was consumed with anxiety & fear, days I wanted to give up, and days I seriously thought we wouldn't meet our miracle. But with an incredible medical team & close monitoring, we did it...and it's the most magical feeling in the world. If we can do it, so can you. And I'll be here with you every step of the way ♡
You, Jack Henry Purling, are worth every moment xx
As usual, I sourced most of our items from Instagram and local/handmade businesses. I know what you’re thinking…‘the baby can’t appreciate wall decals and useless little wooden things’ but I will appreciate it and useless little wooden things are freaking cute! My biggest indulgence this time around has been Jamie Kay – a clothing range crafted from the softest highest quality fibres that my dreams are made of! I splurged on a baby backpack from Vanchi as I plan to babywear bubs as much as possible and this all just made more sense with a toddler!
I also found the most amazing Moses Bassinet on a local Buy Swap Sell group that will easily be moved from room to room while bubs is still teeny and fresh. My final purchase which arrived just this week was a rainbow cot quilt from Lilah & Co – my friend tagged me in a post and I ordered it within 0.5 seconds! And lastly, I am giving the biggest shoutout to Rochelle from Zaeli & Co…a local Adelaide Mum (of a heart kid & premmie bub) who has gone above & beyond to find the perfect fabrics for my style and then make them into wraps, play mats & even bloomers! You all need to go and hit her up! There are still a couple of last minute additions which include his name (an etched bamboo name plaque from Let’s Etch will go above his cot) – but these will obviously be shared at a later date so stay tuned…!
I am so proud of the space I have created for our little Puggle, one where he can feel comfortable and utterly loved. There’s no denying that each and every addition to his first room was inspired by the dream that one day I would be sitting in the rocking chair holding him safely in my arms.
After every storm comes a rainbow...
Suppliers:
Furniture
Dresser: Ikea (Hemnes)
https://www.ikea.com/au/en/catalog/products/30355669/#/00355699
Dresser Leather Pull Handles: Interior Motives
White & Natural Leather Strap Shelf: Interior Motives
https://www.interiormotivesaus.com.au/
Nursing Chair: Adairs
https://www.adairs.com.au/
Cot: Baby Bunting (Boori Pioneer in Almond)
http://www.babybunting.com.au
Moses Bassinet: Bebelicious Moses Baskets
http://www.bebelicious.com.au/
Room Decor
Rainbow Print: LOUPLAB (Etsy)
https://www.etsy.com/au/shop/LOUPLAB
Rainbow Cot Quilt: Lilah & Co
https://www.lilahandco.com.au/
Rainbow Rope Wall Hanging: TopKnotchStore (Etsy)
https://www.etsy.com/au/shop/TopKnotchStore
Snowy River Wall Decals: Blond + Noir
https://thezeroprint.com/
Manhattan Tan Backpack: Vanchi & Outlook Baby
https://www.vanchi.com.au/
Hanging Outfit & Stack: Jamie Kay
https://jamiekay.com/
(*Local Stockist: Oakie Baby)
https://www.oakiebaby.com.au/
Cream Pom Pom Beanie: Zac & Zoe
https://zacandzoelove.com/
‘I’m Here’ Bamboo Milestone Disc: Zilvi (from Oakie Baby)
https://www.oakiebaby.com.au/
Dummy Chains (x2): x&o co.
https://xocohandmade.com/
Dummies: BIBS (from Oakie Baby)
https://www.oakiebaby.com.au/
‘Bump’ Pregnancy Journal: Write to Me
https://writetome.com.au/
Olive & Striped Wrap (over nursing chair): Zaeli & Co
https://www.instagram.com/zaeli_andco/
Bunny Soft Toy: Jellycat Collection (from Seed)
https://www.seedheritage.com/
Round Floor Mat: Zaeli & Co
https://www.instagram.com/zaeli_andco/
Olive Green Bloomers: Zaeli & Co
https://www.instagram.com/zaeli_andco/
Nursery Art Animal Prints (above cot): TwoAndThreeCreations (Etsy)
https://www.etsy.com/au/shop/TwoAndThreeCreations
Dreamcatcher Mobile: HippiebyViki (Etsy)
https://www.etsy.com/au/shop/HippiebyViki
Wooden Truck: Local Market
Olive Wrap (over bassinet): Snuggle Hunny
https://www.snugglehunnykids.com.au/
‘Earth Side’ Plaque: Zilvi (from Oakie Baby)
https://www.oakiebaby.com.au/
Shelf Decor
Useless Pretty Wooden Things(!!): Various (Mitahli Designs & Winnie Dot)
https://www.winniedot.com.au/
Wooden Camera: Behind the Trees (from Jack + Sarah)
https://behindthetrees.com.au/
https://jackandsarah.com.au/
White Bear Teether: Logan & Alice (from x&o co.)
https://xocohandmade.com/
https://loganandalice.com/
Rubber Dummy: Natural Rubber Soother
https://naturalrubbersoother.com.au/
James had immediately received a platelet transfusion overnight but he had not responded – his platelets only rose to 26. The doctors then began questioning whether James had a condition called ‘Neonatal Alloimmune Thrombocytopaenia (NAIT)’. I’ll have a go at describing this, but I totally understand if it doesn’t sink in – it’s taken me a while to make sense of it all! In short, when James was formed, he inherited a type of platelet antigen from both myself and Scott. The antigen he inherited from Scott (which was different to mine) was recognised by my body as ‘foreign’, and my immune system created antibodies to destroy them. These antibodies in my blood crossed the placenta, came into contact with James’ platelets and caused them to slowly decrease. This process generally starts from 10 weeks’ gestation and can eventually deplete the baby’s platelets completely. Do not get this confused with RhD (rhesus) negative blood types – this is completely different and relates to platelets rather than red blood cells. NAIT is a relatively uncommon condition which is not routinely tested or screened for in pregnancy - the Women’s & Children’s Hospital in Adelaide only see about 6 cases per year.
The doctors requested Scott and I have our blood tested immediately in order to determine if this was definitely what had caused James’ low platelet levels. In the meantime, they found specific platelets from a donor in Melbourne and had them sent over on ice immediately. They divided this one donor bag into three and gave James a transfusion as soon as they arrived, and his platelet levels began to rise, increasing the likelihood of NAIT. In the meantime, Scott and my blood results confirmed what the doctors had expected – our platelet types were the ‘typical’ setup of NAIT, hence why James required specific platelets the same as mine (which didn’t have the causative antigen) in order to increase his levels. James received the three transfusions which were enough to initially raise his platelets to a ‘normal’ level, but this also meant they had used the supply if they needed to transfuse again. Despite my offering, the doctors were very reluctant to take and use my platelets unless absolutely necessary, as I had just had major surgery and my levels were also depleted due to bleeding. They instead found a donor on the registry in Sydney and contacted her asking her to kindly donate that day in case they were required, and they were again sent over on ice immediately. This is my not so subtle hint to please donate blood if you don’t already – James’ only hope were those specific rare platelets, and we will forever be in debt to those two kind-hearted selfless people who took their time to save a life – and this time it was our little man’s life.
Back on that first day in NICU, my favourite doctor and James’ biggest fan (let’s just call him Doctor Awesome) explained to us that James’ early arrival into this world was a blessing in disguise and if he had stayed inside just a little longer his platelets may have depleted completely and caused irreversible (if not fatal) internal bleeding...not to mention that he probably wouldn't have survived a vaginal delivery – even now this news is inconceivable. My case was the talk of the nursery. I had medical students reviewing our case, and the doctors were all unbelievably impressed by our little miracle - James needed to come early, and we love him for having the courage and strength to do so.
Fast forward to now. They say the recurrence rate of NAIT is very high (88-97%) with progressively more severe manifestations in subsequent pregnancies. So while this baby might not have this condition (depending on which platelet type he inherited), we are assuming the worst and treating regardless. Treatment is pretty intense (and expensive). I will receive weekly intravenous infusions of immunoglobulin from 20 weeks until delivery, starting tomorrow. IVIg is a solution of human plasma proteins from approximately one thousand blood donors, and contains the typical antibodies found in the normal population. The doctor explained that these antibodies ‘flood’ my blood and ‘trick’ my body to stop creating the specific antibodies which attack the baby’s platelets. This in turn decreases the risk of internal bleeding. The infusions take approximately 4-6 hours and are done under close observation, with the main side effects being severe headaches, body aches and vomiting. Also, these infusions cost the hospital over $8,000 a pop, meaning a total cost of up to $160K just for the infusions throughout my pregnancy. All I can say is thank goodness we live in Australia, if we were anywhere else we quite literally wouldn’t be able to have another baby. At around 34-36 weels (or however far I make it) I will need to have a c-section to prevent any bruising or bleeding to the baby, in case the treatment hasn’t worked – yes there’s a chance that the baby could still be born with low platelets, but thankfully this is rare. Obviously the birth will be closely monitored and bubs will require urgent blood tests and medical treatment in the nursery initially.
I’m anxious for tomorrow – mostly as I don’t understand the process yet and am unsure how my body will respond, but I am so thankful we are aware of this condition and treating it appropriately. I will be drinking lots of fluids and taking preventative panadol in the morning, and will keep you all updated throughout the day. I know this was more of an educational blog and was probably extremely boring, but I only hope I can raise awareness and help someone else who may be frantically googling for a ‘real-life’ experience…and at the very least, you will have a better understanding about this condition and the treatment process as you follow our pregnancy journey and develop your own love for our puggle!
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This morning we packed up and went straight from Normanville to our appointment with Dr W at the Women’s & Children’s Hospital. We didn’t really know what to expect but we kept an open mind knowing that every doctor is different. Dr W reviewed the information from the scan - on Friday my cervix was measuring 22mm, with ‘normal’ being 35-50mm. He explained that they start to become concerned when the cervix shortens below 25mm but at this stage his treatment usually consists of progesterone and close monitoring. Given our history he understood our concerns, and he decided to do a quick scan and have a look himself. After we said hello to our little puggle who was bouncing about happily, he measured my cervix which was now only 18mm…there was suddenly no question that I would be getting an emergency cervical stitch and within minutes it was booked for tomorrow (Tuesday) morning. I felt both relieved and petrified. I knew that the stitch would give this pregnancy the best chance, but I was also fully aware how delicate this situation was. Dr W explained that the biggest risk with inserting the stitch was pregnancy loss (1 in 200), but at this stage the risk was greater if we didn’t go ahead. This made me feel physically sick. I am only 17 weeks pregnant…if anything happens now there is no hope. I understand that there are still no guarantees if we make it to 24 weeks, but there will at least be hope.
Tomorrow morning I will present bright and early to WCH for surgery at 8.30am. I will be staying overnight for antibiotics with a follow up scan the next day. While I’m there, the doctors will organise the IVIG treatments which will begin in two weeks. I will also be having weekly scans from now, which will be coordinated on the same day as the infusions. Dr W agreed that bed rest isn’t necessary, but I should finish work and limit my activity as much as possible (although he was realistic that this would be difficult with a toddler!) While we expected this pregnancy to be difficult, we thought we were aware of and managing the main concerns…it’s as though I had a false sense of security and am being punished for it. This has certainly been an unexpected slap in the face, but right now we are hanging onto all the positives we can - that this stitch will work and we have the best team in Adelaide providing the very best care. Today as we were leaving Dr W said ‘you are doing a great job Amy, the baby is healthy and well’, and this touched something deep in my core. I have so much guilt and feel so much responsibility for the difficult journey my family are experiencing, but these kind words made me feel enough, even if just for a split second. Time to practice what I preach and trust the process, one day at a time…
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So on Monday I met with Dr W from Maternal Fetal Medicine at the Women’s & Children’s Hospital. Naturally, the first thing I did was settle James into a chair with my phone secured in his hands so he wouldn’t climb up the costly ultrasound machine and ride it like a toy car (oh how different it is this time around!) We felt we had approximately 1 minute and 9 seconds to take a sneak peak at the little acrobat that has stolen our hearts, but thanks to Jimmy’s strange fascination with toy reviews on YouTube, this surprisingly turned into a rather in-depth examination and I was able to see everything from our babe’s teeny tiny fingers right down to the length of my cervix. So astoundingly beautiful (the fingers more-so than the cervix). After this we sat down and discussed all things NAIT. Dr W said we would start IVIg infusions at 19-20 weeks continuing weekly throughout the pregnancy. While I breathed a sigh of relief knowing I had extra time to prepare myself for this, I also panicked a little at the thought of starting treatment so late (considering James was affected severely by just 30 weeks gestation). Dr W assured me that bubs was safe bouncing around in its little pool of fluid until then…it’s seriously having a freaking party down there, completely unaware of the drama it’s causing! For the infusions, I would go to the labour ward (in case something happened – so reassuring), have an IV line inserted and receive the IVIg slowly over about 6 hours. If my veins don’t cope, I may even need a PICC line (long-term indwelling central catheter) inserted for the duration of the infusions.
Dr W raised a few more points which I think are worth mentioning (more for my terrible memory than your info!) Firstly, once the infusions begin I will become immunosuppressed. If I am exposed to communicable diseases such as pertussis or rubella (or even common viruses), my body won’t make the necessary antibodies to fight this as my blood will already be saturated with antibodies from the IVIg. Being that I work as a nurse in an emergency department and am exposed to these illnesses each shift, I’m well and truly screwed. Just kidding…but Scott and I are strongly considering that I finish work early – well if I’m honest Scott is adamant that I’m finishing at 20 weeks (no ifs or buts), and I’m sitting over here if-ing and but-ing. I’m not keen on giving up luxuries such as Hello Fresh or ending my online shopping addiction. But of course he is right, it’s just not worth it. Secondly, due to my previous uterine surgeries and the resulting scar tissue, Dr W believes I have a higher risk of placenta insufficiency e.g. the placenta may not attach correctly (or attach too deeply) and will therefore be unable to supply adequate oxygenation and nutrients to the baby. This just once again means more monitoring, so he squiggled on one of my 100 forms for the ladies to check my placenta at the 20 week morphology scan. And lastly, he is still wary that I might have cervical insufficiency due to my previous preterm delivery, so he added a formal scan to my plan at 16 weeks to check on this, as well as an ‘informal’ scan in his office at 18 weeks. Dr W is keen to deliver closer to 36 weeks if possible, but he wouldn’t be surprised if we didn’t make it this far. Have you noticed how the word insufficiency keeps popping up…I mean seriously, it used to be ‘infertility’ and now we’ve moved on to ‘insufficiency’. Rub me out and start again!
The next day I went for my 12 week nuchal translucency (NT) scan. In the past, time has stood still and I have held my breath at every ultrasound until I have seen that heartbeat. So it was such a relief walking into that room feeling unusually confident after Dr W had a good ol’ look at everything the day before. The sonographer asked if I would be ok with them doing the scan internally considering they needed to check my cervical length that way anyway. Of course I agreed, it’s not like my vagina hadn’t been through this before! But wow, the pictures we got were incredible – including a gorgeous 4D side view (I have included this below). The little tumbler finally stayed still long enough to get all of the measurements which were spot on! I was then taken through to another room to see the doctor who combined my blood and scan results and gave me our risk of Down Syndrome and chromosomal abnormalities. One of my blood results had come back abnormal (my papp-a was low at 0.3MOM, normal is >0.5MOM) which increased our risk of Down Syndrome, but only slightly – our risk was still extremely low (1 in 606) when looking at the overall picture.
The doctor mentioned that once chromosomal aberrations were excluded, this result can then indicate other things, which my obstetrician would discuss with me at our next appointment. I was pretty impressed that I didn’t start hyperventilating and crying then and there (what the hell was papp-a and why the hell was it messing with me?), but I’m a little ashamed to admit that I did Dr Google as soon as I got to the car! My advice – don’t do this. A reliable source on Google told me that “a low papp-a is descriptive of poor early placentation and may result in adverse pregnancy outcomes such as: mid-trimester miscarriage, fetal growth restriction, intrauterine fetal death, preterm birth, and preeclampsia”. After that initial slap in the face, I actually had a little laugh. How ironic. The main concerns of my doctors were now validated by this blood test…it was like that little plasma protein was pointing at me and laughing ‘if you weren’t worried before, you have to be now because I’m a real scientific thing!’ Of course this was happening to me! But I also read that this result doesn’t always indicate poor pregnancy outcomes and I decided not to do any further research or cry myself to sleep until I saw Dr Yoong in a couple of days.
As expected, Dr Yoong was extremely reassuring. After discussing our scan and appointment with Dr W, I brought up the dreaded papp-a results. He said “it’s my job to worry about that, not yours”. I think I love him! He explained that our babes growth may slow down in the second or third trimester, so the plan is to do 4 weekly growth scans from now including dopplers. We would obviously then act on anything abnormal and take it from there. I had so many concerns which were eased then and there with a simple plan. It’s a little embarrassing to admit but I think after some of our previous experiences, I worry that the doctors a) won’t ‘believe’ in certain things (e.g. a septate uterus), or b) will completely ignore abnormal results (e.g. thin lining), but I should have known better this time given the amazing specialists we have looking after us now. We left Dr Yoong’s office feeling a welcomed sense of calm as we headed to Mildura for a week-long relaxing family holiday, which is exactly what we need before the craziness begins! In the new year we will begin juggling frequent scans, weekly infusions and follow up appointments with two doctors, not to mention a toddler, Miracle Mumma and (maybe) work!
I know this seems like a lot of…let’s call it difficulty…to make a baby, but as Dr W said, yes NAIT is scary, but we know about it this time around and we can treat it. And as for everything else, we know what we’re looking for and can manage it if/when required. I actually had someone ask me if I think the infertility, surgeries and high-risk pregnancy are all worth it, hinting that I’m being selfish and maybe it’s not meant to be. I’m not saying it’s going to be easy, but I can tell you it will 100% be worth it when I’m holding my healthy new baby in my arms. And one thing I know for sure, it is meant to be. James is here for a reason despite the odds being largely stacked against him, and this baby is no exception. Nothing worth having comes easy (well not for us anyway!)
Thankyou to everyone that continues to follow our journey and awaits updates – I write to ‘let it all out’ (and because my memory is so bad I can’t remember what I ate for breakfast), but it is of course nice to know that people are reading what I’m writing and genuinely rooting for me! And if just one person who is diagnosed with NIAT or who gets a low papp-a result reads this, then it is worth it. Because we have ALL been that person eagerly googling for ‘real’ stories hoping to feel less alone.
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When James was born at 30 weeks gestation, his platelet count was severely low at 13K. Platelets are a component of the blood essential for clotting, and normal levels are between 140K and 450K. Low platelet levels cause bleeding into tissues and subsequent bruising, with severe cases causing uncontrollable haemorrhage. James was born extremely swollen and bruised, mostly around his head and bottom (both of which were ‘stuck’ in my small uterus – his head was up the top and his bum was down in my cervix). He had petechial (red/purple) spots which are caused by broken capillary blood vessels, and suffered a small grade 1 intracranial haemorrhage (brain bleed), but fortunately there was no long-term damage. Long story short, when James didn’t respond to standard platelet transfusion, the doctors investigated and quickly diagnosed James with ‘Neonatal AlloImmune Thrombocytopenia’ (NAIT). Basically, James inherited a platelet antigen from Scott which my body lacked and was recognised by my body as foreign. My body then developed reactive antibodies which crossed the placenta and subsequently ‘attacked’ James’ platelets. Do not get this confused with RhD alloimmunisation (rhesus) - this is completely different and relates to platelets rather than red blood cells. NAIT is a relatively uncommon condition which is not routinely tested or screened in pregnancy (and of course I happen to be that extremely rare problem-causing statistic!) Back on that first day in NICU, the neonatologist explained to us that James’ early arrival into this world was a blessing in disguise and if he had stayed inside just a little longer his platelets may have depleted completely and caused irreversible (if not fatal) internal bleeding – even now this news is inconceivable. We were also told that he may not have survived a vaginal delivery.
A few months after James was born I met with an amazing knowledgeable Maternal Fetal Medicine Doctor (Dr W) at the Women’s and Children’s Hospital who explained that according to our platelet typing, every pregnancy for us had a 50% chance of NAIT. In the absence of intervention, thrombocytopenia in the second affected child is always as or more severe than in the previous infant. This meant that no matter what, our next pregnancy would be treated for this condition. However, treatment is quite intense (and expensive). Dr W explained that I would receive weekly intravenous infusions of immunoglobulin (IVIG) +/- steroids, which largely reduces the risk of hemorrhage to just 2.7%. In my case, IVIG treatment will begin at around 16 weeks and each infusion takes approximately 6-8 hours. The side effects of this drug are quite nasty, with severe headaches, nausea and fever/chills at the top of the list. Also, these infusions cost the hospital around $8,000 a pop, meaning a total cost of $160K just for the infusions throughout my pregnancy. All I can say is thank god we live in Australia, if we were anywhere else we quite literally couldn’t afford to have another baby. I left this appointment 2 years ago feeling extremely overwhelmed but knowing how lucky we are to have these treatments available and access to specialists who perform miracles every single day.
Fast forward to now! On Thursday I had an appointment with Dr Yoong (our amazing O&G who had already contacted Dr W with our news) to discuss the plan of action from here. The first thing we did was take a sneak peak at our little bean, who was measuring a perfect 9w 5d and I heard the heartbeat for the first time at 182 beats per minute! Dr Yoong looked at me and said ‘you still look so anxious’ to which I replied ‘this is just going to be my face for the next 6 months!’ Afterwards, we got to the serious stuff. My due date is 12th June 2019, but I will be delivering via planned C-Section at 34 weeks gestation in early May at the Women’s & Children’s Hospital. Dr W explained that an early delivery (and C-section) is important in the off chance that treatment doesn’t work and our baby has a low platelet count, and will ensure we have the rare specific antigen-free platelets on hand at delivery in case they are required. We have chosen to do shared care between Dr Yoong and Dr W because they are both superstars, but delivery at a public hospital ensures there is a NICU available. I have booked an appointment with Dr W on 3rd December to put this all in motion, and otherwise will be seeing Dr Yoong again at 12 weeks after nuchal scans and blood tests. One thing is for sure, I feel EXTREMELY well cared for and have two of the very best doctors in Adelaide looking after us, not to mention the best radiographers at Adelaide Women’s Imaging! It’s not everyday your O&G personally messages you on a Friday night giving you test results and reassurance, right!?
In other news, James keeps ‘patting’ and kissing the ‘baby in Mummy’s belly’ (I’m pretty sure he thinks my belly button is a baby). I finally feel like I can eat a vegetable again and I even had a coffee today! I can’t recall the last time I did a poo but I no longer have to defend my ‘bee-sting’ boobs! And come early January I'll be seeking volunteers to waste their days away in a sterile & boring hospital to keep me company each week...anyone!? Yes I’m anxious and the lump in my throat seems to be here to stay, but you seriously can’t wipe the smile off my face! At the end of the day, James is our living proof that anything is possible when you have a village, even if the odds are largely stacked against you.
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So as most of you are aware, in June I decided to get a second opinion and as a result I had my third surgery in 13 months to improve my fertility and decrease our chances of premature birth – a hysteroscopic D&C and septum resection, a laparoscopic excision of endometriosis (which after two previous surgeries I didn’t even know I had), and dye studies. We were then told to wait 3 months to let my body heal and give us the best chances of conceiving our rainbow baby. While this whole experience seemed like another step backward (and it was), I truly believe it is the reason I am pregnant today. There is absolutely no doubt in my mind that getting a second opinion and finding a doctor that I trust and who was willing to get to the root of our problems was imperative to our success. I mean, it’s amazing what can happen when endometriosis is properly diagnosed and removed, hey!?
So after 2 months of allowing my body to heal, we decided to just ‘not NOT try’, and see what happened. I ovulated on my own like a big girl, but my period arrived like a bitch on Father’s Day. The next month I booked our follow up appointment to see Dr Yoong (aka the previously mentioned amazing Dr Y) but decided in the meantime to just give it another crack. This time my ovulation was super strong; sex was painful, the cramping was intense and the cervical mucous…I’ll just leave that there! I feel like we timed that shit to perfection…and then we waited. After 10 days, I just knew I was pregnant. I’ve only had that feeling once before, and that when I fell pregnant with James. I never had that confidence with either of my unsuccessful pregnancies. I can’t even pin point what it was, but the feeling was so strong that I pee’d on a stick and hopped straight in the shower, as though I didn’t even need to see that double line (when I got out of the shower I of course snuck a peak, smiled like a kid at Christmas and did a silent squeal slash dance in the bathroom, before sending Scott in to have a look for himself and see his similar reaction!)
Unfortunately, as always with pregnancy after loss, the excitement didn’t last long before the need to protect ourselves from heartache officially sank in. This is the shitty part – the waiting, the not knowing, the anxiety and the what if’s. I’ve always said that it’s impossible to whole-heartedly celebrate a pregnancy after experiencing a loss, especially when that is also associated with infertility. Scott was cautious, and rightly so. He started using the words ‘if’ and ‘but’ and I could see he was shielding himself from the worst case scenario. I vividly remember him saying ‘I will not feel comfortable until the baby arrives’. Unfortunately, this is the cruel reality. You might think I’m being dramatic, but I won’t sugarcoat it – pregnancy in our world wasn’t sunshine and rainbows, it was apprehension and fear. It was excitement, but it was strained. I was trying to be optimistic for the both of us – I had the benefit of that ‘gut feeling’, not to mention the nausea and tiredness – but deep down I was petrified too.
I messaged Dr Yoong the next day and he replied immediately with a congratulations and told me to get a blood test that day. My first HCG (at approx. 12dpo) was 107, progesterone 86…perfect (and much more reassuring than our previous first level of 7!) We busied ourselves for a couple of weeks until we could get that ultrasound, but my levels were rising dreamily each week to 2,153 and then 18,857. Eventually Dr Yoong said it was time for the ultrasound, and I was ready – I needed that final piece of reassurance. Scott, however, was not! He was so concerned that we would once again be told there was no heartbeat, to the point he couldn’t bring himself to be in that room. When I arrived I didn’t feel much at all. I thought I would be nervous or frightened, but I think I had switched it all off. But thankfully, as I was called into that room and the probe was placed on my tummy and zoomed into my uterus, the very first thing I saw was the flickering of our babies tiny, perfect, heart. It was all suddenly so real. This was bloody happening! Our little tadpole measured just 6 weeks, but that heartbeat…oh that heartbeat!! It was the beginning of everything, a weight lifted from my shoulders and a sigh of relief.
And here we are, two weeks later, feeling more blessed than ever. I still worry every day and I still don’t believe it at times. My heart is still racing sharing our news this early and I know we still have a long way to go. I still catch myself checking the toilet paper each time or questioning every tummy cramp. As much as I wish the hardest part was over and we could have a long, stress-free pregnancy, unfortunately that won’t be the case for reasons I will explain in my next blog. We have an appointment with Dr Yoong this week to discuss what will be a high-risk pregnancy, but for now, we are over-the-moon happy and counting our lucky stars every day.
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I do want to mention that while I will be sharing this journey with you all every step of the way, I do find it hard knowing that others are still waiting for their happy ending. My biggest anxiety about sharing our story is not being open and letting you all in, it’s not the worry that something might happen…it’s knowing that these posts can be really difficult to swallow for someone experiencing infertility. I’ve been there, I get it. I’m only recently on the other side of it. But I can only hope that seeing what we’ve been through and knowing where we are now, that these posts can somehow inspire you and give you hope. And I hope one day, when your turn comes, that you will do the same. Because God knows we deserve to celebrate!
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Addison was born at 28+4 and spent 8 weeks in NICU/SCN. Apart from a few small hiccups she had a pretty smooth journey throughout her time there. Addison came home and was doing great, feeding well and settling into the family.
We took all the precautions we thought would help keep her safe. We have a sign on our door asking people to wash and sanitise their hands and not to visit if they have been around anyone unwell. We have hand sanitiser throughout the house and all of our kids know to wash their hands before touching their little sister. Being that she came home in winter, I basically gave up a normal life and hibernated at home to keep her safe.
Addison was home for 4 weeks when her 5 year old sister came home with a cold. Unfortunately we still had to do the school and kindy drop off and pick up which is unavoidable. I'm a very quiet person and even though every fibre of my being wanted to scream at people touching my baby, I didn't know how to tell them to stop. Teachers, kids and parents touched her without washing their hands, without asking me, without taking any precautions. I got out of there as quickly as I could each time...but it was too late.
Each of my kids got sick one by one. My 2 year old (ex 33-weeker) got quite bad and Addison followed…she was only 4 days old corrected. We went straight to the GP who swabbed them, and sure enough they were both RSV positive. We went home to keep an eye on them both. The next day Addison had two apnoea's (pauses in breathing) in my lap. We went straight to emergency and within a few hours she went from just being monitored, to low flow oxygen, to highflow, to bubble CPAP and getting transferred by medstar to a bigger hospital to being intubated. Addy wasn't breathing at all. Her heart rate was sitting in the 20's and she was requiring continuous resuscitation. She was needing to be paralysed on top of the sedation because her body would splint which resulted in them not being able to establish an airway.
For 15 days she was ventilated and had multiple code blues called on her. The little cold my 5 year old had from school turned into bronchiolitis and pneumonia with lots of complications. We very nearly lost our little girl. She has been home 3 weeks now and I'm petrified to leave the house. Every sneeze or cough scares me. A lot of people have no idea how common illnesses can affect newborns especially premature ones who have immature lungs.
I'm not scared to ask people politely to not touch my daughter now. Miracle Mumma’s sign that I have for the pram is a huge help because it stops people just reaching in. I still feel like I'm in a blur and don't have normality yet since her birth, she's 4 months old but most of that has been spent in hospital. Every day I am so thankful. I'll happily hear her cry at 1 am because I'm so grateful to have her here <3
- Becky Anne, Mum to Addison
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I know I don't generally get this worked up, but this is (clearly) something I'm extremely passionate about. You may think we are on the other side of this, but I'm still living the effects of my 30 weekers immature lungs at the age of two! This is our third winter, and I was told that his lungs would have matured and developed by now, but unfortunately, the longest he has been 'well' this winter is a little over a week. Just two weeks ago he overcame pneumonia, and today he has developed that same cough & is requiring frequent ventolin for his increased work of breathing. Yes, kids get sick, but his 'sick' often requires oxygen or admission. Yes, he may 'seem' well and we may downplay it now, but this is just a reminder that premature birth can affect children beyond those NICU walls.
Thankyou Becky for sharing your story and helping me raise awareness of something so extremely important. I really hope it can save just one child and family from going through the trauma you have recently endured. You are brave, strong and a bloody good Mumma - don't you ever forget it.
This is not a joke. Let's keep these vulnerable children safe.
]]>Dr Y said there are 3 things we need to address:
The uterus septum. He wants to confirm that the second surgery was a success. Dr S was confident after my 2nd resection surgery that she had removed the septum…so confident in fact that she didn’t feel the need to do any further imaging. But Dr Y has booked me for a 3D Ultrasound to check the shape of my uterus, just in case!
The thin uterine lining. Dr Y believes this is going to be tricky to manage as it isn’t as simple as the hormone treatment I was given the past few cycles to ‘fix’ it. My body is obviously releasing the right hormones in order to ovulate, so he doesn’t believe it’s purely a hormone issue. In fact, treating with hormones can sometimes do more harm than good e.g. cause more of an imbalance. I swear this made sense at the time, but I’m doing a shit job at describing it! At the end of the day, if we do treat with hormones, we need to do so at the beginning of the cycle, not wait until after ovulation. Hallelujah, that’s what I’ve been saying all along….
? Endometriosis. This one came as a bit of a shock. Dr Y explained that most women with uterine abnormalities also have some form of endometriosis. The fact that I miraculously conceived James naturally after having a D&C (to clear out the uterine lining and products of conception after our first miscarriage) also pointed him to this. Although I have very mild symptoms and it hasn’t been reported on any of my history despite previous hysteroscopies and imaging, he doesn’t want to rule it out.
So what do we do about all of this? Firstly, we pause fertility treatment for a month (or two). Yes, this was bloody hard to hear, but in all honesty, I had prepared myself for this going into the appointment. I want answers and a proper plan, and this takes time. Dr Y said ‘I always tell my patients that we need to start slow – it’s not a race, and there’s no point rushing into treating something we don’t yet understand’. I think mostly, we are upset that we have wasted months and hundreds of dollars with treatment that was sub-optimal, not to mention the time we have wasted if I still have a septum despite two surgeries (gosh I can already feel my blood boiling!) Which brings us to the next step…a 3D ultrasound. If they find that I do still have a septum, Dr Y will perform another resection and look for endo at the same time (after I scream into my pillow and eat a tub of ice-cream) – this is seriously my worst-case scenario. If my uterus looks nice and empty like it should, we will have a discussion as to whether I have surgery to determine if I have endometriosis +/- remove it at the same time.
And then we start fertility treatment again. This will either consist of 1) clomid (to induce ovulation) and neupogen (a fancy medication that’s inserted through the cervix into the uterus to initiate an immune response, thicken the lining & promote implantation) – this is the cheapest option. Or 2) IVF – obviously the more expensive option but it gives us greater control and subsequently a greater chance. IVF. Those three little letters, so damn frightening; something I honestly never thought we would need. These options are something we will need to discuss further when the time comes, but something that will be playing on the back of our minds in the meantime. Dr Y explained that we were extremely fortunate to fall pregnant and maintain a pregnancy to 30 weeks with James (even though it wasn’t easy), and I must admit that this probably gave us a false sense of security leading into baby #2. We knew the next pregnancy wasn’t going to be easy, but we honestly thought that falling pregnant wouldn’t be as hard this time around. How wrong we were.
Although this is a lot to take in, I feel like a weight has lifted from my shoulders. I walked out of that appointment with tears rolling down my face – I finally felt heard. We had a plan, and we had found someone who was willing to give us the best shot at making our dream a reality. If you ever feel as though you don’t matter, please get a second opinion until you feel as though you do, because YOU DO MATTER. What works for some, doesn’t work for others. Sometimes you can only do so much and get so much out of a situation before you need to move on. Nothing is permanent, as long as you’re learning something along the way.
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"I’ve wanted to share our story for a while now, I just didn’t know how. I wasn’t sure if I wanted to relive everything my partner and I have been through, not to mention my daughter. It was by far the hardest thing we have ever been through, but it has made us stronger and who we are today. I wanted to share our story because I think it is important to raise awareness for prematurity, as it is the number one cause of deaths in infants under 5. Now that’s a scary fact. 1 in 10 babies are born premature. And even less than 1% are born before 27 weeks, making my daughter even more of a little miracle to our family.
I can’t even begin to mention how lucky I am to have such an amazing husband, life partner and friend. Matthew and I speak about what we want to do, places we want to go and what we want to achieve in life all the time. Even though we have conversations about life all the time, I specifically remember the day we decided to start a family. Originally we had planned to wait until I finished my studies, as I was working full time and studying too. But many of our friends were expecting, my brother had just told us he and his partner were pregnant and it was making me awfully clucky! Some of our friends had taken a long time to fall pregnant too. Some took up to 18 months to fall pregnant, and Matthew and I decided we just couldn’t wait that long. So, within just that one 5 minutes conversation, we had decided to start a family, we were even already discussing names in the same conversation we were both so excited.
We were extremely lucky. I fell pregnant straight away. Less than four weeks later we were telling our parents we were expecting our first baby and they were going to be grandparents. I know it sounds cliché but it was all a dream come true. We couldn’t be happier. I had a really good pregnancy too. A touch of morning sickness for a few weeks in the afternoons but that was it. I was loving being pregnant and feeling our little baby kick inside me. Everything was perfect up until my 20 week scan. This scan was incredible, to see how much my baby girl has grown was amazing. But a doctor came in to have a second look, and they discovered a blood clot forming on my placenta. She said it wasn’t anything to worry about, if anything if it didn’t resolve I would possibly need a C-section. I thought to myself, If that was the worst thing that could happen it wouldn’t bother me. As long as she is born happy and healthy. My blood pressure was high at this check up too, which is where my severe onset of pre-eclampsia began.
My next check up was my 24 week check up at my local GP when I also had my glucose test. I was actually only 23 weeks at this stage. But my blood pressure was high again. My GP said to me in a calm voice, “You should go to the emergency at the Mercy and get checked out.” She seemed calm but still concerned, so off I went to the Mercy Hospital trying not to over think it too much. My partner met me there for support. I was monitored for a few hours, had my urine tested and my blood pressure come down. This was when 2 doctors first spoke to us about pre-eclampsia. I had heard of it before but didn’t know much about it. I was sent home being told it was just the start and it most likely wouldn’t get worse until late pregnancy, and if I had any concerns to get my blood pressure checked at the chemist anytime for piece of mind. Well two days later I had really bad back pain which I’m not even sure if it was related, however I had my blood pressure checked and it was through the roof. My husband called the Mercy and they said to come in for monitoring again. I don’t know why, but I decided to pack a bag, putting some snacks in (because I was constantly eating as you do when you’re pregnant), my laptop, uni books and a hoodie, just in case we were stuck there for a few hours. Little did we know when we walked into the hospital that late afternoon, that I wouldn’t be leaving again until a month later after my daughter was born.
This was one of the hardest nights of our lives. We weren’t prepared for what was about to happen and our perfect little world would come crashing down. Like other times I went in, I peed in a cup, had my blood pressure checked and this time had my blood tested too. I felt like were waiting ages just to be told I could go home when a doctor come in to talk to us. It wasn’t good. My hands are shaking and I am already fighting back tears as I write this. I was told I had severe pre-eclampsia, and that they will need to deliver my baby girl within the next few days. I was only 23 weeks and 5 days at this stage, so the doctor was telling us to discuss whether or not we wanted to revive her at birth or not if she didn’t come out breathing. Because she was still at such an early gestation, her chances of severe disability was doubled, she was certain to have many health problems if she was even to survive and it didn’t look good for her at all. I don’t think there are enough words in the world to describe the emotional pain we were in this night. So many uncertainties and so many questions, I just wanted to go home to my own bed and pretend none of that had just happened.
So I stayed in hospital that night alone as I did the next few weeks. The next day, I had an amazing doctor assigned to my case and I don’t know what I would have done without her. She gave us hope, she told us with each and every single day that passes, my baby girl would grow and her chances of survival would increase. They were going to let my baby girl grow for as long as possible until it was no longer safe for us. So, whether I liked it or not, I was staying in that hospital until my daughter was born and I was in the best place I could be. At first, I just wanted to be left alone to mourn the loss of my perfect pregnancy, the loss of my normal fairy tale start to motherhood and beginning a family. There was nothing normal about our situation and it all felt so unfair. Being in hospital all day and all night for weeks gave me so much time to think. What was going to happen? Will she be ok? What will happen if she isn’t? The questions were endless and my doctor did the best job she could to answer them all, but some things she just couldn’t answer for me, the unknown. I had so much support from friends and family. I had friends asking to come see me, which most of the time I replied with ‘I’m not feeling up for it today’. But my friends and family being the amazing people they are, would sometimes just surprise me. I may not have felt up to seeing people, but at the end of the day, when I did have people visit me, it made things feel normal again, and I would forget all my problems for a little while. I haven’t had the chance to really thank my family and friends for this, you all have no idea how much it really did help.
While being on bedrest was extremely hard for me (not sleeping in my own warm bed, not seeing my fur babies, hospital meals and most of all freedom) I have to share one amazing thing that happened while I was in hospital. As usual, my Mum would come sit with me during a chunk of the day while my husband worked a few hours during the day to make ends meet. I had eaten a few bites my oh so delicious hospital meal and I decided to make a vegemite sandwich instead. Thinking back now, it all made sense. Mum was pushing me to go down stairs to the café to get out of the hospital room for a while. But when I walked out of that elevator door, I was so shocked and surprised to see a huge bunch or friends and family there waiting for me, where they had set up and planned a surprise baby shower for me!! I cannot even begin to describe how surprised I was. I burst into tears as I hugged everyone. We all sat there for a few hours playing games, eating food that was actually delicious and catching up like a normal baby shower. So many people walked past staring or wondering what was happening as we were set up right outside the café. This had to be one of the best parts of my whole experience being in hospital and I cannot thank my friends enough for this. But at the end of the day, when they all went home, even though I had an amazing time and I felt so happy, I was alone again in my hospital bed and reality set back in.
About another week passed, it was a terrible rainy day when my doctors came in to my room, sat down and told me today was the day they needed to deliver my baby girl. I had been trying to prepare myself for this day since I walked into that hospital. I had to stay positive for the sake of our baby girl. I called my husband, then my Mum. And the rest of the day was a bit of a blur. I had a magnesium drip before going in for my C-section, which made me throw up when I hadn’t even eaten all day. This was to help my baby girls brain development before she was born. I had already had several steroid injections to help her lungs. Now the rest of the work was up to her, which wasn’t fair. What baby comes into the world already having to fight for their life. Well, mine did. At 4:30pm on the 26th of September, 2016, Billie-Rose entered the world. BREATHING. She even let out a little cry. At just 25 weeks and 6 days gestation, she was a tiny 675grams and 31cms long. The C-section was probably the easiest part of it all, a pinch on my lower back and that was it. I was having up to 2 blood tests each day which was worse and my arms were black and blue from it. So off went my tiny baby girl to NICU with her father, where she would spend the next 85 days and nights.
Although I didn’t get my ‘fairy tale’ start to mother hood, I was incredibly thankful my baby girl came out breathing. It was almost a bit of relief for Matthew and I. I remember calling my Mum, letting her know she was ok and she could now come in and visit, knowing she had been at home all day worried sick. But it wasn’t over for me either. The next day doctors discovered I had a major haemorrhage internally from my C-section. I had lost half of my body’s blood and needed 5 units of blood to replace it in emergency surgery. 3 days after she was born I finally got to go down to NICU to meet my daughter in real life. At this point I had only seen her wheeled off in her incubator and a few photos. Even though I was fighting for my own life just the day before, all I wanted was to see my baby. As if all this was unnatural enough as it was, not seeing my daughter until she was 3 days old was heart breaking. But that wasn’t it for me, the next day I was diagnosed with a bowel blockage which took two treatments to fix, and then my blood was too thin causing even more dramas. What was meant to be the best time of my life giving birth to our daughter, was by far the worst week of my life. Every year people remember the time their children were born, and this is the last thing I want to think about each time her birthday rolls around and it’s not fair. However, I am extremely grateful she is here and thriving. So after 8 days in HDU myself, I was able to hold my daughter, skin to skin, on my chest for the first time when she was 8 days old. Holding my daughter was indescribable, and I never wanted to let her go. I knew the NICU journey was going to be hard and an emotional rollercoaster, but not this ridiculously hard.
Having a premature baby isn’t anything like a normal baby. You wait a few days before announcing she has arrived because you don’t know if she will make it, you don’t have friends and family flooding in with balloons and gifts coming to meet your new baby because they don’t know if they will make it and you could only have 1 visitor at a time in the NICU. There was no fussing over who she looked like more, whose eyes she had or what colour hair. She was hardly even a baby when she was born. A week later when I did finally announce her birth via text and Facebook, I didn’t even want to put photos up because she didn’t even look like a normal baby yet, and I knew people would freak out.
A few days later, I finally got to go home which was bitter sweet. I was finally free, able to sleep in my own bed, see my fur babies and eat a beautiful home cooked meal. But every single time I left that hospital without my daughter it got harder and harder. There is nothing normal or easy about having a baby in the NICU. I know people may think or say things like ‘at least you get to go home and sleep” or “You have someone caring for your baby, you don’t need to do anything” but you are up all hours of the night pumping or wondering if your baby is ok, or if your phone rings at any point, will it be the hospital calling to say something is wrong. But I guess you could say I developed a routine, I got up every morning after pumping precious breast milk, got ready and went into the NICU to spend as much time as possible with her, and then went home to bed ready to do it all again the next day. Occasionally we missed her so much we drove all the way back to the hospital after dinner just to see her one more time and kiss her goodnight.
Some days weren’t so bad but some days were really hard. There were so many ups and downs. One step forward then two steps back. I remember one morning standing in the shower crying harder than I had ever cried before in my life. I felt so lost. So conflicted. I wanted nothing more than to be by my daughters side 24/7 like any other normal mother, but I didn’t want to walk into the NICU again for the 1000th time, watching machines, drugs, doctors, nurses and midwives keeping my daughter alive. Leaving her each and everyday, sometimes more than once a day, got harder and harder. I remember many times sitting there next to her isolette, plucking up the courage to get up and say goodbye to my daughter for the millionth time, getting to the car and bursting into tears. But as she grew, getting older, heavier and healthier, it did get easier. I had more freedom. I was able to help change her nappies, she finally got to wear clothes, and breast feeding her for the first time was incredible.
As our NICU journey progressed, a nurse one day mentioned the ‘h’ word- HOME! Our daughter was promoted to the special care nursery where she needed to just come off her oxygen and successfully do sucks feeds for 48 hours, and we were making plans to bring our baby girl home! I remember this day so well because my husband and I went back to the car after the home conversation with the nurse, and we both burst into tears we were both so happy and relieved at the same time, the first time in what felt like forever we were crying happy tears! So after 85 days and 85 nights, we roomed in at the hospital where for the first time WE got to care for OUR baby girl all day and over night before bringing her home. The morning we were discharged, Billie-Rose had her first photo with Santa at the Mercy Hospital by Hope Photography and Channel 7 news did a story on premature babies spending their first Christmas in hospital where Billie-Rose made her debut on National TV. So home we went, settling into our new life as a family, leaving the NICU behind us. We will always remember the sounds and smells of the NICU, the endless handwashing, kangaroo care and milestones reached. And even though we may be back there one day who knows, the memories, doctors, nurses, midwives, staff and families will forever be a part of our lives. We owe our daughters life to these amazing hero’s and we will be forever thankful for everything they have done for us.
We are so incredibly lucky. Billie-Rose is now 18 months old, has just started walking and is achieving new milestones on a daily basis with no current health issues. Not everyone is so lucky and that’s why I want to dedicate this story to all the babies born sleeping, all the premature babies who didn’t win their fights and every little miracle baby walking this earth today. You are all so loved, missed and thought about every single day. You will have a special place in all of our hearts forever."
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If you have a story to share and would like to be featured, please email me: miraclemumma@gmail.com. Together we can raise awareness of premature birth and offer hope to others who are going or will go through the same. You are never alone <3
Disclaimer
These are the thoughts and opinions of Tegan and do not in any way represent Miracle Mumma or it's affiliates
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I had a terrible pregnancy. After the initial excitement of finding out I was pregnant, I have to say that it rapidly turned into the pregnancy from hell. From about 4 weeks the nausea set in and it never left. By 7 weeks I was in hospital and diagnosed with hyperemesis gravidarum – a complication of pregnancy that presents with severe nausea, vomiting, weight loss and dehydration. It is not just morning sickness, it cannot be cured by eating dry crackers or ginger. At best the dehydration caused by constant vomiting can be managed by iv fluids.
I was fortunate enough to have an amazing obstetrician who knew what we were dealing with and was able to admit me to hospital on a regular basis, sometimes one or two times a week to receive iv fluids and medication. We tried everything to help keep the nausea and vomiting at bay - antiemetics, vitamins, acupuncture, ondansetron (a medication most commonly given to patients undergoing chemotherapy), at one stage I was even on steroids which reduced the vomiting from 30 times a day down to about 7 but it came with the price of severe insomnia and rendered me barely able to walk more than 50 metres without feeling like I was having a heart attack. I was weak - physically and emotionally. At first my obstetrician was hopeful that the condition would improve by 14 weeks, it didn’t. He said give it another couple of weeks, still no improvement. By 20 weeks he said that it was likely I would suffer with hyperemesis right up until delivery and that I did.
I remember sitting at my parent’s house that night crying because I simply had no idea how I could possibly make it through another 20 weeks of relentless nausea and vomiting. I’m not going to lie at this point in my story - I lost count of the number of times I wished for the pregnancy to be over. I didn’t know how to make it from one day to the next, sometimes I could only focus on getting through one hour at a time.
I began to fear that when the baby did finally arrive I wouldn’t feel any connection because she was the thing that had made me feel sick for 6 months straight, I feared I would resent her. I often felt that nothing could possibly be worth the torture I was going through (even though to be a mum was all I have ever wanted to be).
Besides the hyperemesis, there were a few other complications to contend with. I have a blood clotting disorder and have a history of deep vein thrombosis so it was decided that the best course of action was that I be placed on blood thinners as a precaution. This meant giving myself clexane injections into my stomach every day from 10 weeks (joy of joys, but my attitude to this was that you do what you gotta do). Next problem – placenta previa. This was detected fairly early on and I was due to get another scan done at about 30 weeks to see how we were tracking with this, but I didn’t manage to make it that far.
On the 20th of December at 29 weeks and 2 days I left home at 10:30am to go to a routine appointment with my obstetrician. I had no idea as I left home that morning that I wouldn’t return for 5 days and that when I did I would be a mother.
I arrived at my obstetrician’s and the nurse took my blood pressure. Once. Twice. It was high but she said it was no cause for concern yet, she would get the doctor to take it again a bit later as women often get a bit anxious when they first arrive at the rooms and it sends their blood pressure up a little.
My doctor came in and he commented that I looked a little puffy around the jaw – in my mind I fobbed this off as probably being a result of the prolonged vomiting. Then he asked if I’d been experiencing any headaches. I get headaches a lot so the answer was yes but I didn’t think much of it. Next question: have you had any visual disturbances like seeing lights? My answer to this was yes - I had been seeing little star like lights but I hadn’t really thought much of it, to be honest I thought it was probably just to do with my almost permanent state of dehydration.
He then took my blood pressure and it was still high and unfortunately at that point I knew where the conversation was heading. My mum had preeclampsia during her pregnancy with my brother so I was familiar with the condition. A quick test of my urine indicated that there was protein and suddenly it was looking more and more like I had developed the same condition. He wrote me a pathology order labelled urgent to go and get another urine test as well as a blood test at Clinpath. So, after our appointment finished off I went feeling slightly annoyed that yet another thing was not right with this pregnancy. He said he would ring me by 5pm that day with the results.
I went and had the blood and urine tests done and I then went over to Mum and Dad’s. It was about 2:30pm in the afternoon and I remember thinking that I felt a bit crampy, like a mild period pain but I really didn’t think anything of it. As I’m writing this I realise it sounds like I didn’t think much about any of these symptoms but please keep in mind that I was in the midst of what I can only describe as having the worst hangover of your life every day for 6 months so I guess I wasn’t really thinking all that clearly. Things changed however when 20 minutes later I felt a gush down below and thought what on earth was that? This definitely wasn’t right. I went to the toilet and saw blood. Still not panicking but knowing something was wrong, I called my obstetrician’s rooms straight away. His staff said to head straight to Burnside Hospital, where I was booked to give birth. About 2 minutes later my obstetrician called and asked how much bleeding I was having and a few other questions and said to go straight to The Women’s and Children’s Hospital and that he would meet me there. Uh oh - this is not good...
I told Mum that we had to go straight to the hospital and as we set off I called my husband to say that there was a bit of a problem and that I was going into hospital. By this stage of my pregnancy I was spending two days a week in hospital for fluids and iv medication and I didn’t really offer him any further details, not wanting to alarm him so he just said okay, and I said I’d call him later.
The journey to the hospital seemed to take forever even though it only took about 15 minutes. By this stage I was starting to get frantic because I could feel that I was losing more blood and by the time we got to the hospital I was so anxious to get inside that I decided that I would make my own way inside before Mum had a chance to find a park. I made it across the road and into the main entrance and then experienced one of the worst moments of my life - I could feel more blood coming out and felt that it was no longer just blood. Doubled over in pain and fear with tears streaming down my face a nurse/ midwife who had finished her shift and was leaving stopped to ask if I needed help. I told her that I needed to get to the Women’s Assessment Service and she put her arms around me and guided me down the long corridors. Had it not been for her help I most certainly would have taken a wrong turn. I will be forever grateful to her for stopping to help me, I had no idea what was happening but I knew that the moment she found me I wasn’t going to lose my baby, not that day anyway. As we walked she tried to gather as much information as she could when we walked through the doors to the WAS. I was put in a wheelchair and taken straight through and hooked up to a CTG machine.
It seemed that my little girl was doing okay, she wasn’t in distress but my blood pressure was through the roof and I was still bleeding and it turned out that what I had felt earlier was the passing of blood clots, suddenly there was talk that my baby might be making her arrival sooner rather than later. It was at this point that I asked my Mum if she could let my husband know what was going on. She called him and told him that he needed to come to the hospital. He still wasn’t aware of the severity of the situation and wasn’t in a particular hurry to leave work so my Mum said to him that this baby could be born tonight! Poor guy nearly fell off his chair and dropped a couple of choice words (not his usual vocabulary in front of my Mum).
The staff at the Women’s and Children’s Hospital were in regular contact with my obstetrician and I was moved up to the High Dependency Unit where he met me. He and another obstetrician did an ultrasound and the look on their faces said it all. They could see a large clot the size of a grapefruit behind my placenta, and he also confirmed that I did indeed have preeclampsia and that sealed my baby’s fate. This baby needed to be born tonight and he said that clot is a ticking time bomb. I would learn weeks later that despite being on blood thinners I had developed several clots which had caused part of my placenta to die, causing the large clot to form behind it. That coupled with the placenta previa and the preeclampsia caused a placental abruption, we were both lucky that we had made it to the Women’s and Children’s to receive the best care available.
As he started to go through what would happen next, he asked if I knew anything about premature babies, if I had ever even seen one. No, I had not. He said that he would try to get a neonatologist to come up and talk to me but I think we ran out of time because the next thing I knew I had the anaesthetist asking me a million questions and I was in theatre before I knew it. And so began the haziest 8 weeks of my life.
I remember 4 things from that theatre.
1. That I absolutely cracked up laughing at something my husband said while I was having the spinal block put in, sometimes if you’re not laughing, you’re crying but it probably wasn’t ideal timing
2. That I had the world’s kindest anaesthetist reassuring me throughout the whole process
3. That I was clinging onto my husband’s hand like I’ve never clung to anything in my life.
4. That my baby girl was born
They brought my little girl around and put her in front of me to look at for about two seconds before the neonatal team descended on her. It would be hours before I saw her again.
The next time I saw my baby girl was when they wheeled my bed into the NICU. There she was – the tiniest most fragile little thing I had ever seen. All of those fears about not feeling a connection to her were immediately dispelled and I wanted nothing more than to hold her and tell her how much I loved her. But there she was, separated from me in her isolette, covered in wires and tubes and a ventilator. Despite this, I was told that she was in a good condition, this was a good outcome and she was doing surprisingly well.
It wasn’t until late the next afternoon however that I was finally allowed to hold her for the first time. I’m not sure I have the words to describe what a surreal experience this was. I’m sure there is not any mother who doesn’t dream about the moment that she will get to hold her baby for the first time, I don’t think anyone thinks it will be like that though. Attached to CPAP, with wires and lines everywhere, I was so afraid that I would break her. I cried – she was skin and bone. There was no fat on her little body or limbs, she was red, with translucent skin and skeletal, but to me she was beautiful.
When I saw her the following day she had already graduated to NICU 2, which is when I finally decided that her name was Eloise (we had still been deciding between two names) and a few days later she was moved to SCBU1 – the timeline here is very very hazy. I do remember my obstetrician was amazed though that she was already in SCBU. Her exceptional progress in those first few days was a sign of things to come but that didn’t make the experience any easier for me.
NICU and SCBU life is full of ups and downs. One of the things I struggled with the most was that I felt a huge sense of loss and guilt in those first few hazy weeks. I felt that I wasn’t sure I was even a mother. While I was pregnant, I often felt that I actually wasn’t pregnant, I just felt horrendously sick. I lost weight rather than gaining weight, I couldn’t enjoy any of the usual aspects of pregnancy like getting the nursery ready or a baby shower or watching my belly get big and round. Then I felt like I didn’t really give birth – an emergency caesarean kind of robs you of the birth experience that you had imagined for yourself, especially when you don’t get to hold your baby immediately after. The real icing on the cake though was that even though she had been born, I felt she wasn’t really my baby because there she was, separated from me in her little plastic house. On top of all this I had this soul crushing guilt over all those times I wished for the pregnancy to be over. Yes, I had wanted to get to the finish line, I wanted the sickness to end but never in a million years did I mean for it to end like this. I think that what few people understood and what in the coming weeks some misinterpreted understandably as postnatal depression (thankfully it wasn’t) was that I was grieving this sense of loss and drowning in guilt.
I was discharged from hospital on Christmas Day and it broke my heart that I had to leave her behind. As we left the hospital that morning, a passer-by might have imagined that we were there as visitors because leaving empty handed we certainly didn’t look like overjoyed brand new, first time parents. I lost count of the number of parents I did see leave with their baby and I wondered when it would ever be our turn. I think up until this point I had been coping relatively well but this is where I started to unravel. I hated being apart from her, and I was in a constant state of anxiety that the next time I walked through the doors of SCBU that she wouldn’t be there. I cried myself to sleep every night for about three weeks because I was so afraid that she was going to die. I think that any NICU/SCBU parent can tell you that in this environment nothing ever stays the same. Every day is different, changes in her condition, changes to her feeding, breathing, medication, the amount of time we could spend holding her (which some days was not at all). Nothing was ever constant and I struggled enormously with this, for weeks I felt like I was drowning but I didn’t know which way was up and which was down.
We were so so lucky that for a baby born so early Eloise had a fairly straightforward journey. There were no major complications but she did struggle with apnoea of prematurity and scared me half to death on multiple occasions. I’m not sure anything will ever erase from my memory the first time she had an apnoeic episode whilst I was holding her. Just as I was starting to feel more confident about holding her while she was still attached to Optiflow and various other lines and wires, she stopped breathing – she was bradycardic, having a desat and was turning blue in my arms. Her alarms started blaring and within seconds several nurses swooped on us, scooped her out of my arms and had the situation under control but I was a mess. As I was leaving the hospital that night one of the nurses said to me that the parents of these babies are so brave; they have to be brave to leave and they have to be brave to come back. No truer words were ever spoken – to have to leave her behind each evening required bravery but to walk back in there the next day unsure of what I was about to encounter required bravery too. It is well documented that kangaroo care has a multitude of benefits for the baby and parents and that is what I was doing when Eloise had her apnoeic episode. I was torn between wanting to offer her this care, and of course I longed to spend as much time as possible holding her but after multiple episodes like this it did require a great deal of courage on my part to keep getting her out day after day for a cuddle.
Even though everyone offered encouragement and support, I still felt desperately out of my depth. I was still physically quite unwell from my pregnancy and surgery and was not giving myself time to recover. Nurses, doctors, my husband, my parents all told me that it was okay if I took a day away from the nursery to rest and help myself heal but I couldn’t stay away. For 54 days, I made the journey to and from the hospital, sometimes three times a day (sometimes in the small hours of the morning when I couldn’t sleep for worry).
Despite my worries and fears, Eloise was kicking premmie goals left, right and centre. She was gaining weight, her feeds were increased, we finally got her off Optiflow after numerous attempts, she moved into an open cot and then her monitors were switched off. All these premmie milestones gave me hope that we were moving closer to home. However, the biggest milestone for me and I think the moment that allowed me to really start healing from my grief and sense of loss was the first time I was able to breastfeed Eloise. I was at the hospital late one night having a cuddle when her nurse asked if I wanted to try to breastfeed. She was only 33 weeks at this stage and it was such an unexpected suggestion but I jumped at the chance. With the nurse’s help Eloise latched on straight away and while she only sucked for a minute or two, at that moment in time my heart exploded with love, excitement and pure joy (if only I could bottle that feeling)! I was laughing and crying and kept saying to my husband “look at her! Look at us!” Of course I was excited when Eloise was born and of course I loved her but I think the trauma of her birth and the fact that she was in the NICU meant that I didn’t experience those feelings that most mothers get to experience when they get to hold their baby straight after birth, I still didn’t really feel like she was mine. For me that night was when I got to have that moment and it is a memory I will cherish forever. That moment gave me the strength I needed to keep going for the remaining weeks that Eloise was in SCBU because I finally felt that she was mine. It was the breath of air I needed when I felt like I had been drowning. Slowly we were able to substitute one of her tube feeds for a full breastfeed and there was no looking back – she loved it and I loved it. I eagerly anticipated the next time I could feed her myself. Even now weeks later when I’m at home feeding her I watch her and think back to that night and I can’t help but smile.
Our NICU/SCBU journey finally came to an end 8 weeks after Eloise was born. I don’t know how I can ever thank the doctors, nurses, midwives and other professionals who took care of me and Eloise. I have never seen so many people in one place who are so dedicated to and so passionate about the work that they do. While I have offered my thanks to everyone involved in our care, a special mention does need to go to two nurses in particular – our angels. Not only did they take amazing care of Eloise while she was in SCBU but they took me under their wings and lifted me up on the days that were just too hard. They wiped my tears, they hugged me, the encouraged me and they taught me so much.
And so here we are, all together at home and I can honestly say that I have never been happier. While I’m sure there will be more ups and downs (because as I quickly learnt – the premmie journey doesn’t end after NICU), I feel quite certain that after what it has taken for Eloise and I to get to where we are, we can face any challenge that is thrown our way. She’s my Mini Miracle and I’m her Miracle Mama.
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Thankyou for sharing your story Pip. Eloise is extremely lucky to have such a devoted, brave & loving Mama by her side <3
]]>We rushed out the weekend before the party and did some shopping, including buying James his presents – a slide and a swing. We set these up on the day in the backyard (along with his trampoline and a bouncy castle) to keep the kids well and truly entertained. At the last minute, we were able to score the gorgeous Beck from RJN Photography to come along and take some updated photos for us (she did James’ newborn and first birthday photos & holds a special place in our hearts). Our guests each brought a plate of morning tea to share, and we just relaxed outside while the children played.
James opened his presents with an excitement I haven’t seen before and a grin from ear to ear! But let’s just say once he saw a new car, nothing else was up to scratch! We then had cake, which was lovingly made by my talented Mum (and of course was car themed!) I don’t think James stopped smiling or moving the entire morning! I can probably go as far as to rate this as one of the best days of his life! It was the perfect celebration of our fun, independent and adventurous little man. As much as I loved going OTT for his first birthday, it just goes to show that all a kid really needs is some friends, cars and cake.
Now sit back and bask in the happiness below!
Party Details:
James Shirt: Cotton On Kids (as much as I hate to admit it, being a huge handmade advocate!)
James Shorts: Target (see above!)
James Bow-Tie & Suspenders: Cute2Hoot
James Sandals: Country Road
TWO Milestone Card & Chalkboard Print: yours truly!
Cake: My Mumma
Photography by the super talented Beck from A Mother's Love Photography, who also photographed Jimmy's First Birthday
"Ivy-Mae was 8 months old when we discovered the tumor. The first thing we noticed was the iris of her eye slowly changing colour, followed by a white glow in photos. Ivy also couldn’t really open her eye in the sun, she would always close that eye. After some doctors appointments here in our local town, we were rushed down immediately to Sydney Children’s Hospital (Westmead).
At that stage we were unaware what it was in Ivy’s eye. We underwent tests for the week (MRI, ultrasounds, blood tests). It took a whole team of doctors to work out what it was. Unfortunately we were given news no parent wants to hear - Ivy had a tumor in her eye and she needed to have her eye removed ASAP to save her life. At this stage we didn’t know if it was cancerous or not. The tumor itself was so close to the optic nerve, it needed to come out ASAP.
We prepped Ivy for surgery and the following day on the 27 November 2017 our worst nightmare came true...we kissed our baby girl to sleep and sang “you are my sunshine” quietly in her ear, knowing quite well that the next time we see her a part of our baby girl will be missing. It took over 4 hours from the start to Ivy waking up in recovery. The longest 4 hours of our lives. She then spent a further week down in Sydney, until we were allowed home.
It’s now 4 months down the track. We were given the news that Ivy had a rare cancerous tumor (epithelioma). There are only 30 cases known world wide. The symptoms Ivy was showing were the same symptoms as retinoblastoma. Ivy is doing really well, almost walking, saying Mum, Dad, Nan, Pop. At 14 months old our sweet little warrior princess is moving mountains and we are so so proud of her."
Tomorrow Ivy and her brave family venture back to Sydney for Ivy's prosthetic eye. Please keep them all in your thoughts and send your love, strength and positive vibes.
On Tuesday, as I drove down to have the ultrasound that I knew would change our future one way or the other, I was surprisingly confident. Yes I was terrified that our fate was already determined and there was nothing I could do to change it, but somewhere inside there was hope. Scott met me there and the first thing I noticed was the terror in his eyes. As we were sitting and waiting, he said “I hate this. I’ve never been excited for an ultrasound. Not once, not even with James. We have never had a good experience.” It tore me apart to think that we will never get to celebrate a pregnancy the way others do. We will never get to experience those exciting normality’s without being plagued with fear. Our past experiences had taken that away from us and taught us to be cautious in order to protect our hearts.
It was clear from the start of our ultrasound that it wasn’t good. The sonographer did an abdominal scan first and we saw the gestational sac, but not much else. She told me to go empty my bladder so that we could do an internal, and at that very moment, I passed a large clot into the toilet. This was the universe slapping me in the face and telling me to just bloody accept it. I was in tears when I got back to the room and I knew it was over – I looked at Scott and I could tell that he knew too. They continued with the internal, not saying a word, while Scott and I grieved a baby that we had made plans for over the past year, but would never get to meet. We’ve been there before; somehow experiencing a feeling of gut wrenching pain and complete numbness all at the same time. But none of these hardships have toughened me. It hasn’t gotten any easier. My heart was crushed into a thousand pieces all over again in the exact same places that had never truly healed.
When I shared our pregnancy news early I knew there was the possibility that we would miscarry and that I’d have to share that heartache with the world. In fact, being open and honest was my way of challenging the tradition of announcing pregnancy after 12 weeks and reducing the guilt and shame associated with miscarriage. But I guess I wasn’t prepared for how difficult it would be until it happened. I don’t regret sharing out story for one second, but Tuesday when we received the worst possible news, I felt those exact two things – guilt and shame. Yes, I know the facts; miscarriage is common, it’s not my fault, I couldn’t have done anything to prevent it, we are just ‘unlucky’. But at what point does it stop being bad luck and you start to question yourself? I’m not going to deny it; after those first moments where my heart shattered inside my chest and my dreams were torn away, I thought ‘how stupid am I going to look?’ I felt foolish for holding onto such high hopes, for celebrating so early, for believing that this time we might be the happy statistic and not the ‘unlucky’ ones. I should have known it was too good to be true. I should have known it wouldn’t be that easy for us. It never is.
I constantly get told that we are so brave and so strong, but I certainly don’t feel brave. And sometimes I wish people would see that I’m vulnerable. The fact that we’ve been here before doesn’t mean I’m better equipped to cope. In fact, for the first time in a long time, I feel like I’ve been beaten. I feel broken and deflated. And although I absolutely hate to admit it, I feel alone. I’m not a quitter, but right now, I honestly don’t know how I’m going to get the courage to do this again. I know we need to allow ourselves time to grieve, but I’m stuck in a place of nothingness. One very selfish and lonely part of me just wants it all to be over, while the other part can’t even muster the strength to think about moving forward. I don’t want to face the process that is required to make our dreams a reality. I know there will be people who expect me to sugar coat the truth so they don’t have to feel uncomfortable hearing it, but this is the reality of now and I’m going to speak it. I know that time will help me to heal and each day will bring new light, but for now, my heart aches in corners I didn’t even know existed.
Despite all of this, I desperately need you to know that we feel like the luckiest people in the world to tuck our little man into bed at night, each battle reminding us of how he defied the odds that were so hugely stacked against him. He is without a doubt the brightest shining light at the end of each and every tunnel. We do not take this for granted. Please also understand that I don’t want to be pitied. I don’t write about our experiences and share our journey to get sympathy. Sharing this feels very raw and very scary, and it certainly isn’t easy for me, but it’s important. I’m opening up about something I am still struggling to understand myself, in the hopes that others can understand it a little better. I'ts ok to break the silence. It’s ok to feel guilt and shame, it’s ok to be vulnerable. It does not make you weak, it makes you human. This is real, it is devastating, and it happens way more than we hear about. It happened to me…twice. But mostly, no one should have to go through it alone. It takes a village. If you can’t find yours, I’m here. I’ve got your back.
Together we can break the silence.
#ihadamiscarriage
If you have lost a baby, please don't hesitate to reach out and gain information and support from the following organisations:
SANDS - http://www.sands.org.au/
Bears of Hope - http://www.bearsofhope.org.au/
If you want to talk with someone who has been there before, my door (or email) is always open!
]]>Anywho, by the end of the day I was feeling much more confident for the following reasons:
1. It's rare to see a heartbeat before 6 weeks. Yes, google told me this, but I'm also a nurse and even I tell my patients this. THIS is why we don't scan early!
2. If we assume that I was about 3 weeks pregnant when I got that ridiculous HCG level of 7 and work forward from there, I should be around 5-6 weeks. Which means bubs is measuring close to my dates.
3. I hadn't been cramping and the bleeding had stopped.
I went to bed feeling all sorts of positive that everything was going to be ok, and I would just have to keep busy to pass the time. And then this morning I woke up, went to the toilet, and was bleeding again. Yep, a large amount of bright blood. Once I finally got over that morning slap in the face and I had taken my anger out on poor Scott, I rang Dr S's office to get my blood results. This would at least either give me some more hope or allow me to prepare for the worst. My HCG level was 12,783 and progesterone 33.5. This was good. It was still high, and definitely had well and truly risen since the last test. But we don't have a reference other than my level of 1800 a week ago, so again, this doesn't give us anything concrete. There's still a possibility that it was higher a couple of days ago and has only just started dropping. But you know what? WE WILL NEVER KNOW. Like everything with this shitty unknown stage of pregnancy, we just never get answers. It's actually torture.
This next week is going to be tough. In just the last 48 hours my emotions have been up and down more times than my undies. My nails are really not going to enjoy this time. But now we wait. We are literally going through the motions - we've been here so many times before that we are becoming accustomed to it. This hits home pretty hard. It's pretty damn upsetting that the 'abnormal' has become our normal and is so familiar to us. Scott and I are walking around silently stewing and feeling constantly lost, with the 'what if's' hanging over our head. We can barely make each other laugh, and when we do, it's a cheeky grin because we're not sure that we should be laughing. We knew this pregnancy was going to be hard, and we prepared ourselves for that. And trust me, we know more than anyone that we are so blessed to have this opportunity again. But we didn't think it would be this hard this early. We thought the first trimester was going to be the easy part (before the multiple scans, infusions & appts truly began).
But here we are, stronger than ever with each setback, still giving each other encouraging words and loving hugs (in between my meltdowns when I don't want to be loved!) We look at James and then look at each other, both thinking the same thing - man we are so lucky to have him. And you know what? If I'm going to trust anything right now, it's my gut. And my gut is pretty damn confident that I'm growing a baby that will make James the best big brother in the world. And it's craving hot chips. Nuff said, right?! We've got this.
]]>I did some serious research - I wasn't ready to give up on our breastfeeding relationship. I resorted to expressing and feeding James bottles while I looked at ways to prevent the reflux (he was MUCH happier on the bottle - he was fed upright, he could control the flow and he wasn't gulping air in frustration). Firstly, I attempted to reduce my supply. I began to express smaller amounts and would hand express in the shower if I felt full and uncomfortable. I tried nursing in different positions. This wasn't really for us, but I did find that placing his feet down in my lap rather than holding him horizontally across my body was easier on him. We burped James frequently during a feed...I mean, a lot! We held him upright for at least 30 minutes after a feed (I used the baby carrier if I needed to get things done). We elevated the head of his bassinet - this was especially helpful for night time feeds when we wanted to put him back down soon after a feed so we could get some sleep!
I then researched conservative ways to ease the discomfort of his reflux. We did some pretty serious tummy massage at each and every nappy change - this has to be quite firm for it to be effective. Our fav NICU nurse show me the most amazing technique and while it looked rough, James absolutely loved it. And then when I tried it, I could seriously feel the air bubbles popping inside his tummy - it brought him huge amounts of relief. Don't be afraid to be firm and try different things - we would lay James on his change table and stand at his side. I would put my thumb on one side of his belly and my four fingers on the other side and squeeze firmly and pull my fingers together and up. Not sure if that makes any sense, but it was super effective for us.
We used wind drops (I'm pretty sure these don't work but it made me feel better that we were trying something!) We also introduced daily baths. I have no idea what it is about baths, but he would release a hell of a lot of gas! Another amazing trick that sounds really weird but works...putting some pressure on bubs bumhole and releasing quickly (this was again shown to us by our favourite NICU nurse). We used a warm, soapy facewasher or gauze to do this, and I swear, each and every time we released the pressure, James would let out ripper farts! He's going to hate me when he's older haha! At one point we even tried reflux medication, and while I wasn't keen on this at all, it did seem to work. We weaned him from this pretty quickly once we felt confident that our own preventative measures were more effective.
And the final measure that worked for us (probably better than all of the above) was a nipple shield. I didn't use one in hospital, in fact I hated them. But my sister-in-law suggested I try one as a last ditch effort. Man these things aren’t glamorous, but James latched on immediately, sucked strongly for 30 minutes and drained a boob. He didn’t fuss, he was comfortable and he didn’t even need a top up. What was the secret? James didn’t have to work so hard, it was similar to a bottle teat, it was easier for him to latch and it slowed the speed of my flow. We didn't look back.
Eventually James was strong enough to feed without the nipple shield, my milk supply slowly decreased to suit his needs, his tummy matured, and he grew out of his reflux. I truly believe that persistence, patience and (a lot of) tummy massage saved our breastfeeding relationship, which ended up lasting a huge 14 months! As difficult and as tiring as it is (during one of the toughest times of your life), try different things with the intention of fixing the root of the problem. I didn’t want to express, I didn’t enjoy using the nipple shield and I really didn’t like the idea of giving James reflux medication. But trial and error is fundamental, and at some point (hopefully before turning grey) you will find something that works.
]]>1. My progesterone was high which was a good sign - my body was trying to support this pregnancy
2. HCG levels are unreliable & varied in early pregnancy - it's less about the number and more about making sure they are doubling every 48 hours, which mine did!
3. I could have ovulated later than I thought - this one's a bit harder for me to believe. Yes I might have ovulated later, but we didn't baby-dance later. So unless Scott's sperm has some serious staying power, it is unlikely that I have the dates wrong. And knowing when we last did the deed, I should have higher levels. This is the reason I lost hope to begin with. A hcg level of 7, 16 days after last intercourse isn't very promising.
So on Monday, I called Dr S's office hoping to get some answers, but was told there's nothing they can do at this early stage & we need to just wait (yeh, great!) and pray that my levels continue to rise. I didn't have any cramping or bleeding, I still felt pregnant (which is strange with such a low hcg), and my high progesterone suggested I shouldn't get a period anytime soon. So we waited. I tried to keep busy. This included an uplifting trip to Kmart for some major retail therapy (trust Kmart to make me feel better) and a not-so positive trip to the Play Cafe (let's just say that forgetting to pack socks for James almost pushed me over the edge). Then on Wednesday before my late shift, I went and had my bloods repeated. Dr S's office marked my bloods as urgent and said they would ring me with the results that afternoon. When I arrived at work, I could feel my heart racing and I felt sick to my stomach - man, not knowing is hard! But on my afternoon tea break, I got the call and my level had risen to 96! I was finally pregnant enough to be excited about it! The nurse assured me that I could celebrate - yes, my levels were low, but they were rising & my progesterone was high. They weren't concerned and I shouldn't be either.
I rang Scott who was also anxiously awaiting the news, and his exact words were "Really? That's so exciting. I was not expecting that!" I could hear the excitement in his voice. We were both super shocked - I think our history has taught us to be cautiously optimistic but also to protect our hearts from the worst. So when the bad news never came, we struggled to believe that we actually had been given the best news possible! And now here we are almost a week later, and we couldn't be more thrilled. I will be honest, I am still a little anxious about my low levels, but I am so damn over-the-moon, can't contain myself, excited. We deserve this. And I truly believe that you guys have played a huge part in this little bean sticking. THANKYOU for giving me hope when I had none left, THANKYOU for throwing some serious positive vibes my way, and THANKYOU for always supporting me and our story. I do apologise...this may be the longest pregnancy ever! But I can't wait to share it with you every step of the way. The ups, the downs, but mostly...we're having a freaking baby!
I'll give you a quick run-down on what happens from here...
I have repeat bloods on Wednesday & I see Dr S on Friday. I will then be booked in for a dating scan. Our pregnancy will be high risk. I will be referred to Maternal Fetal Medicine immediately to discuss treatment of NAIT during pregnancy (the platelet disorder James was born with - I will explain more about this in my next blog) - this is the biggest concern and will require an extensive management plan & intensive treatment. We will also discuss the steps we will take to prevent pre-term labour. The next few weeks will be pretty busy with appointments and information overload. I promise to keep you updated & to describe things as simple as possible!
We are so blessed.
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