One Mum's Story: Fiona & Airlie
On the night of the 5th January 2006 I thought my life was going to end. It started with a pain high under my ribs. My blood pressure began to elevate and I was given medication but nothing would stop it, the onset was very fast. Everything felt like it was rushing by as I zoned in and out through the pain, it's hard to put into words. The midwives looking after me were caught off guard. It was your token scene out of a movie with medical staff pulling up the sides of my bed and rushing me to the birthing suite where I was consumed with the pain. Time lapsed between me zoning in and out, the pain was just so bad; I didn't know what was going on around me. I was given endone, pethadine, morphine and magnesium to control the pain and control my blood pressure as it was reaching the limits where ladies often have seizures and strokes and what is referred to as eclampsia. I was stabilised over night and prepared to have my baby girl early the next morning.
At 9:09am on the 6th Jan 2006 while I lay under a general anaesthetic, a c-section was performed by the amazing doctors and nurses at Royal North Shore Hospital, Sydney. My daughter was born weighing a tiny 861 grams. She measured 35.5cm in length and she had a head circumference of 25.3cm. In laymen's terms she was the same size as a 600ml Mount Franklin water bottle. Due to the risk involved my husband had to wait outside and was given news to visit the NICU after our baby girl was admitted. I was admitted to ICU where I continued to be hypertensive (rising blood pressure). I spent 2 days there with very little recollection of what happened. I do remember my husband bringing me a picture of a tiny baby wrapped in plastic and telling me how a wonderful Chinese lady was caring for our little girl. I spent 6 days in hospital after the birth and the remaining time in accommodation on the hospital grounds.
The first time I met my daughter it was a very surreal moment. I was wheeled in on a bed and the most amazing song Angel by Sarah MacLauchlan was playing softly in the background. A room filled with pod like cribs surrounded me and busily doctors and nurses worked around us yet it felt like we were the only people in the world. She was tiny and fragile but yet an amazing spirit was already evident in my tiny daughter. We chose to name her Airlie as she was as breathtaking and unique and Fae in honor of her Great Nan and my mother too.
When I was able to hold Airlie it was the most blissful yet antagonising moments of my life. You question why this has happened to you and want to take her place. You also share in some of the most amazing experiences learning how to become a part of the team that teaches you how to heal and grow your baby.
Milestones are different but just as special and when your baby finally hits the 1kg mark or is strong enough to breath on their own it's like a tiny white light begins to shine from the end of that dark dark tunnel and you begin to believe you may actually go home. Many times my chest was tight with worry and several times I panicked but Airlie was always independent and strong. Royal North Shore NICU Staff always taught us that we were our baby's advocate. That we should always speak up for her because although they are the professionals we are her parents and we see any tiny change usually before others do.
The life of a NICU family is one that is hard to describe. You live your life moment by moment never looking too far ahead and never having a chance to look back either. We met some amazing people during our time in NICU and many after we left too. Those other parents who experienced the NICU rollercoaster have shared more with us than some of those who have known us our whole lives. I received great support from my husband Adrian, our son Mason who was 5 at the time and my family. But sadly some don't quite know how to handle a situation like this. Many people don't send you cards or gifts and very few congratulate you. I always struggled with the lack of support shown by some. Other than my closest family members those who supported me the most were perfect strangers; those who had been through the experience and understood.
While Airlie was in NICU she battled a number of premmie issues like suspect infections, breathing issues, immature lungs, gut and eyes, bilateral inguinal hernia, PDA which is a small but vital duct in a baby's heart which should close at birth but in premmies sometimes doesn't so she was medicated but thankfully closed enough not to warrant surgery.
As the staff began to see what Airlie responded to they built her care around this and she began to excel. I expressed every 3 hours for 6 weeks until she was able to fully breastfeed. When Airlie was given expressed breastmilk in a nasalgastric tube I would give her a dummy hoping that she would soon understand that sucking meant you got a fully tummy. At Airlie's birth age of 27 weeks gestation she was not born with the sucking reflex and most babies do not have this until they are approximately 35 weeks gestation. When Airlie was 32 weeks gestation a nurse heard her sucking on her dummy while being fed so she suggested we start breastfeeding.
At 33 weeks we were transferred to a level 2 local hospital which I found very distressing after being inside a level 3 NICU. The facilities are nowhere the same which took some time to get use to. Between 32 weeks and 35 weeks Airlie began to breastfeed starting at 1 feed a day and building her way up until finally she was fully breastfed.
At 35 weeks gestation or 6 weeks birth age she was discharged weighing 3lb 8ozs. At this time we really found it very hard to find clothing, books, nappies, dummies all those things that are readily available if you have a full term baby. We struggled through but I found it quite distressing when told it wasn't worth some retailer's time to stock such products. I also started to see that there was very little support out there for premmie babies and their families and felt something should be done about it.
At age 1 Airlie was a huge 6.7kg and still wearing 000 clothing but clearly a giant not in stature but in spirit. We have kept in close contact with our NICU and have returned each year for the NICU Graduate Christmas party and have visited on other occasions to donate items and just say hello. Each year the nurses remember us and are delighted to see the amazing little girl Airlie that they helped grow.
Since Airlie's birth my perspective has changed on a lot of things. I shared some precious time with lots of families, some of whom now have angel babies and I learnt so much from them. I have promised myself to never be someone who fears saying something so chooses to say nothing at all in any situation.
I was so compelled to support other families of premmie babies that I set up www.momentbymoment.com.au. The site provides clothing and gifts for premmie babies while offering a supportive environment with personal stories, articles and more. My passion defiantly shines through and has helped me also become the Exclusive Distributor of Cuski Baby Comforter, Cuski Kid's Orthopaedic Pillow and My Tiny Hands Please Wash Your Hands Signs. I was told once that little acorns grow into big oak trees and that speaks to me on many different levels. We have also added www.cafeprem.com.au which is a blogging community allowing families and health professionals to share their experiences on premature birth, premmie babies and beyond.
I also founded the first support group for premmie babies and sick newborns on the Central Coast of NSW which is also a founding member group of the National Premmie Foundation.
I am also very active in Australia Action on Pre Eclampsia (AAPEC) www.aapec.org.au to raise the awareness of PRE ECLAMPSIA and HELLP Syndrome. These are the conditions that could have taken my life and my baby's, and sadly we have come to understand has taken many of our fellow PE sufferers' babies and severely impacted on mothers' lives.
If there is one thing I want people to understand is I don't look at my experience as a traumatic horrible experience, I look at it as an unexpected arrival filled with beautiful and amazing people. I think this is due to the excellent care we were given. It is not ideal to be premmie but in our case nothing could be done to stop it and the health professionals that looked after us are amazing people that I will love forever.
After experiencing this I understand that everything needs to be improved but that we must be grateful for what we have and then to see that the glass is half full and not half empty. Now 2 years on from my experience I don't think 'what if she was full term' because she will never be full term. I want my daughter to know that she is perfect the way she is and for me to know that I never did anything wrong and to not blame myself.
If you want to learn more about premmie babies please visit www.momentbymoment.com.au and please share your stories with us.
If you are a Mum who has a story to tell or you know of one, email your story to firstname.lastname@example.org. If you have a photo feel free to include it in your email.