My Premmie Baby Story

Moment by Moment – Fiona & Airlie

Nothing can quite prepare you for the day you are told you are going to have a premature baby. For me it was a desperate situation as I was suffering from pre eclampsia and HELLP Syndrome so both my daughter and my life were in danger. I was all but 27 weeks pregnant when it started and within days my precious baby girl was born. My health became increasingly worse but it was a game of how my welfare was managed opposed to my baby girl.

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, pethidine, 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 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 as the stunning beach town and also due to us honeymooning there it just fit. We chose Fae in honor of her Great Nan and my mother too.

Over the coming weeks our lives were changed forever. We began to live inside this parallel world which is the Neonatal Intensive Care Unit (NICU). Inside NICU’s miracles happen, battles are fought and sadly some are lost and we had no idea which we were going to do.

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 at 2months old. A bottle of water was always beside me to help keep my milk supply up and was a constant reminder of just how far Airlie had come since her early arrival. When Airlie was given expressed breastmilk in a nasal-gastric 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 (13 weeks early) 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 fed a day and building her way up until finally she was fully breastfed.

At 35 weeks gestation or 8 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.

Airlie went on to grow into one amazing little girl. For the first year of her life she stayed very small. At 8 months old 5 months corrected Airlie did become sick with RSV and spent time in hospital back on oxygen. She was also found to be anaemic so also had a blood transfusion and a large amount of iron over the few months following that. We had several appointments with health professionals like physios, paediatricians and eye doctors. We are also a part of a follow up program with Royal North Shore where they test and collect data on Airlie so they may learn how she develops and also so they can learn better ways in the future to look after premmie babies which we are very proud to do.

At age 1 Airlie was a huge 6.7kg and still wearing 000 clothing (approx size 3month old full term baby) 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 lost their babies. I have promised myself to never be someone who fears saying something so chooses to say nothing at all in any situation.

Please take a little time to watch the movie made for Airlie Fae’s first birthday party. We share lots of pictures of her journey. http://www.momentbymoment.com.au/content/view/27/62/

Author, Fiona Dixon is the driver and inspiration behind Moment by Moment and its sister sites Cafe Prem and Premmie Baby Forum. www.momentbymoment.com.au  www.cafeprem.com.au  and http://premmiebabyforum.momentbymoment.com.auMoment by Moment and sister sites are leading the way in Australia when it comes to providing premature baby clothing, gifts and related premmie products in a supportive and informative environment. The company ships Nationally and World Wide and has many preemie friends around the world.