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Miracle Mum, Kacey-Lee says until you have walked the path of a parent with an extremely ill or premature baby it is difficult to completely understand why the littlest thing is celebrated and never taken for granted. She shares her story of welcoming baby Oliver into the world.

"My baby was born at 29 weeks because I had severe preeclampsia. It was lucky that I had a pre-existing relationship with an obstetrician in Sydney, because I doubt the outcome of my son’s birth would have been as positive.

We live in western New South Wales, and I would travel the four and a half hours to attend my OB appointments. I chose to see my OB/GYN in Sydney and not one in Dubbo because it saved me the hassle of rehashing my complicated medical history.

I had a routine appointment in Sydney on the Friday before my son’s birth. My blood pressure was high, I had swelling and other symptoms of pre-eclampsia. He let me return home only because my mother, who was with me at this appointment, was a nurse and promised to monitor my blood pressure and call him if she was at all concerned.

As it happened, my blood pressure dramatically rose on Saturday and then on Sunday he told me to meet him at Norwest Hospital in Sydney. I was admitted to Norwest on Sunday. My blood pressure stabilised but I knew I would be in hospital until I delivered. On Monday all was good until late afternoon when it became clear that the likelihood of me delivering before 34 weeks was high. My blood pressure was rising and my son was showing signs of distress. The decision was made that I be transferred to Westmead as soon as possible because Norwest could not handle a baby born below 34 weeks.

I was taken to Westmead by ambulance. My husband was back in Dubbo and was planning to come down the next day. My mother, who drove me to Sydney, had gone back to the hotel because I was convinced nothing would happen and told her to go and get some rest.

Not long after arriving at Westmead Hospital the decision was made to do an emergency caesarean section. My mother just made it to be with me during the surgery because they could not wait the almost 5 hours for my husband to get there.

Our baby Oliver was born on Monday night weighing 760g. He suffered from Inter-uterine growth restriction, and a significant feto-maternal haemorrhage. He was stabilised and quickly rushed to the Neonatal Intensive Care Unit. He was so critical that I couldn’t even catch a glimpse of him as they rushed him passed me. I would not see him until Wednesday.

I spent the next 48 hours in high dependency with round the clock one-on-one care because I became unstable and need specialised medications to control my wildly fluctuating blood pressure.

My husband finally arrived at the hospital 3 hours after our son was born. The next three months we spent at Westmead by our son’s bedside. We were away from home, away from our support network. We had no time to prepare for this. We were lucky that our family and friends at home rallied and made sure everything at home was taken care of.

I know that had our son been born in Dubbo he would not have survived. Dubbo does not have the facilities or the specialised staff to look after such a critically ill, premature baby.

Had it not been for my mother nursing background and a vigilant doctor insisting I go to Sydney I know that our son would not have survived. I may not have either.

Since Oliver has been home I have become a hermit. I don’t allow surprise visitors. I don’t take him out to public spaces because I know that Oliver is a vulnerable baby. Being so far away from specialists I don’t want to risk him getting sick because I can’t just drive to the nearest Children’s Hospital. I have to go to the base hospital and if they can’t handle it they have to call NETS and wait until they arrive and take us to a Children’s Hospital.

I have not attended any mother’s groups because my birth experience and the proceeding 3 and a half months are not a common occurrence. I can’t relate to women who made it through the third trimester. I was only a week into my third trimester when Oliver made his grand entrance. I can’t relate to having a baby and leaving the hospital with a baby in my arms. When I was discharged my baby was still critical in the Neonatal Intensive Care Unit. I can’t relate when the women talk about being uncomfortably pregnant and not being able to see their feet because I was barely showing when I had my baby.

The reasons why I don’t attend mother’s groups is because I don’t want to have to explain to everyone why my baby is more vulnerable than theirs. I don’t want to be a magnet for sympathy. I don’t want to deal with the looks that other mothers invariably give me upon hearing Oliver’s story. I don’t want to have to explain why I must insist that hand sanitiser be used before touching my baby. I don’t want to explain why my baby as two ages; an actual age and a corrected age. I don’t want to deal with mothers who say they have a premmie when in fact their baby was just a week early. Without actually going to mother’s groups I have already encountered all of this and being in a mother’s group I would be in a situation where all of this is inevitable.

Having an online nurture group would be a sanity saver. To be able to have a circle of men and women who have been through the high and lows of having a sick and premature baby would be invaluable. Not having to explain the two ages my baby has, the sometimes extreme measures I take to keep my baby well, the wonder and joy of seeing him grow and thrive despite his beginning would be a dream come true.

I think when you have a sick and premature baby you look at your baby in a new light. You take great delight in the smallest of positive changes. Each gram gained is to be celebrated not expected. Each smile and cry to be cherished. Until you have walked the path of a parent with an extremely ill or premature baby it is difficult to completely understand why the littlest thing is celebrated and never taken for granted.”

Thank you Kacey-Lee for sharing your story.

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We welcome every Miracle family story, no matter what stage of the journey you're at. We encourage those wishing to share their story to submit it HERE.

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