My Amazing Airlie Fae – Premmie Baby Girl born at 27 Weeks

Airlie Fae 27 weeker 1lb 14 ozs next to Dad's hand.

Airlie Fae 27 weeker 1lb 14 ozs next to Dad's hand.

Fiona & Airlie Fae

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, 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 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. Over the coming weeks our lives were changed forever.

Airlie Fae photographed in the early das of NICU on CPAP next to her dolly that was bigger then her.

Airlie Fae photographed in the early das of NICU on CPAP next to her dolly that was bigger then her.

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 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 (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 near the same which took some time to get use too. 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.

Look how I have grown! Airlie Fae in SCBU.

Look how I have grown! Airlie Fae in SCBU.

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 premmie baby 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 and in the first year of her life she stayed very small.

Airlie Fae all dressed up to leave hospital 8 weeks after birth.

Airlie Fae all dressed up to leave hospital 8 weeks after birth.

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.

During the first year Airlie had 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.

Airlie Fae's 1st Birthday - Family Photo including Adrian, Fiona and Mason

Airlie Fae's 1st Birthday - Family Photo including Adrian, Fiona and Mason

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.

I was able to breastfeed Airlie untill she was 21 months of age. In the early days I spent many hours expressing breast milk (EBM). Every 3 to 4 hours you could find me hooked up to a machine which was ever so romantic but none the less was what needed to be done so I did it. I was extreamly lucky tha I could express as much breast milk. It was very important to me to express and then breast feed Airlie so I did everything possible to make sure that happened. When I could finally breastfeed my premmie baby girl Airlie it was one of the biggest joys of my life.

Airlie started attending pre school at 2.5 years of age and enjoys interacting with other children. Airlie made great friendships with the children and also with her teachers and the staff including Justine, Kelly, Belinda, Kath, Meg, Karen Lyn and many more.

Airlie Fae 2.5 years old ready for first day of preschool. Pictured with her brother Mason.

Airlie Fae 2.5 years old ready for first day of preschool. Pictured with her brother Mason.

I was so compelled to support other families of premmie babies that I set up www.momentbymoment.com.au. Launched in 2007 the site provides premmie clothing and gifts for premature 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 and the Cuski Kid’s Orthopaedic Pillow. I was told once that little acorns grow into big oak trees and that speaks to me on many different levels. I also founded the first support group for premmie babies and sick newborns on the Central Coast of NSW which meets on a monthly basis and provides support to families in the Central Coast area.

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 all this I understand such things like our health service do need some improvements but firstly I think that we must be grateful for what we have and then to see that the glass is half full and not half empty.

Now 3 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.

Moment by Moment and Fiona Dixon has been honoured with becoming a Nominee, Finalist and Winner the Central Coast NEW BUSINESS of 2008 , Nominee in the PRIDE OF AUSTRALIA 2008 ROLE MODEL and Finalist in Small Business Champion Awards.

Fiona has a keen interest to raise community awareness of premature birth and issues that surround premmie babies and their families. Due to Fiona’s own personal story with pre eclampsia she also wishes to draw attention to PE and HELLPS.

If there is something you would like to raise awareness on please contact Fiona where you will find she is more then willing to help you in your cause.

Airlie has grown into one amazing little girl. She is the love of my life and I wouldn’t change a second I have had with her. She was my precious premmie baby girl now she is my amazing big girl.

Airlie Fae now a beautiful 3 years old girl.

Airlie Fae now a beautiful 3 year old girl.

About Fiona Dixon

Fiona is the Mother of a 2 full term babies (40 & 37wks) and a 27 weeker due to Pre Eclampsia and HELLP Syndrome. Through her own experience she seen a need for premmie support, premature baby clothing and an Australian based information website that would help both families and friends through the experience of having a premmie baby.

8 Comments

  • October 27, 2009 | Permalink |

    Hello my dear friend! Reading this blog is like looking at my own pregnancy journal and experience. I cannot believe how similar our stories are. You must be my Twin from Down Under. I have had tears in my eyes the whole time I was reading your blog! My little red head was running around me as I was reading it, with all of the energy in the world! lol

    Your daughter is such a little cutie and your son is so handsome! I know we both count our blessings every day! Thanks for sharing your story!

  • shaliyah
    August 23, 2010 | Permalink |

    I am so happy for you and your baby girl. The same exact thing happened to me 11 days ago. My son was born at 26 weeks weighing 1lb 6oz and currentky in the NICU. I am terrified. He had surgery his first week due to an infection in his intestine. Now there is a problem with one of his lungs. I am hopeful after reading your story and I pray every day, sometined every hour. I am doing the same thing, pumping away and hope that my lil man stays strong. God bless U!

  • Melissa Bartlett
    February 23, 2011 | Permalink |

    Hi Fiona, I came across your website searching for premmie baby clothes.. I am currently going thru a situation similar to yours.. I was admitted into hospital when i was 19 weeks pregnant with my twin girls after my doctor told me that i had a shorten cervix.. i was then put on strick bed rest with bathroom privledges only.. as my weeks progressed my cervix started to play up.. at 24 weeks my cervix dialated to 7cm and i was then rushed to the delivery suite and hooked up to the fetal monitor, cannular drip and was monitored every 4hrs with observations.. i had some braxton hicks happening but was kept into the delivery suite for two days before transfered back upto the antenatal suite.. Suddenly on the 21st January, 2011 i went into full labour with 20min contractions.. i was rushed immediately down into the delivery suite and hooked up to the machines again.. at this stage i was really scared and worried about what was going to happen to me and to my little girls.. the staff from nepean nicu was waiting in the waiting room prepared for when i went into full dialation.. it was 7am on the 22nd January, 2011 and i was in full dialation.. my little girls were born… Jessica was born 9:32am weighing 762gms 31cm and Elizabeth was born 9:41am weighing 662gms 33cm.. they are in the nicu nepean hospital at the moment.. they are in there for the next 10 weeks.. i am there every day and expressing my milk for the girls every 3-4 hours.. i feel like a real jersey cow that is on schedule all the time.. i don’t mind doing this cause i know my girls are going to get good antibodies and nourishment.. the team at the nepean nicu are fantastic and couldn’t ask for a better team.. so when i read your story it made my heart sink and brought tears to my eyes.. thanks for sharing your experience to us as the public.

  • July 23, 2011 | Permalink |

    Hi Melissa, Thank you for taking the time to post this message. It has some how become lost in cyber space but it is here now! I hope you and your girls got through NICU. I would love an update on how the 3 of you are and hope that you are well. NICU is a pretty intense place but it is filled with such amazing people. You took me right back with your comment about being a jersey cow and the expressing too! I expressed straight for 8weeks every 3 hours and then breastfed Airlie till she was 21months. Take Care Fee xx

  • July 23, 2011 | Permalink |

    Shaliya I hope you and your premmie baby boy are okay? Feeling terrified is completely fine in the NICU as it is a scary time, especially when you first get in there and everything seems so foreign. I am so sorry to hear that your little boy had an infection in his intestine, was this NEC? I am also sad to hear that he had trouble with one of his lungs.
    I am glad that reading Airlie’s story has made you feel hopeful of your son’s outcome due to premature birth. That is all I ever wanted from the start when I was setting up Moment by Moment. I wanted families who were experiencing the unexpected early arrival of a premature baby to find some comfort in knowing that there are stories out there that have happy and healthy children that were born prem. Even though this is a very confronting experience that we are never prepared for I am glad that I experienced it. That might sound insane but I don’t think I would be the person I am today with out this. It taught me to look outside my own little bubble I call life and see what others experience, not to judge others decisions until you know what it is like to walk in their shoes, to respect the medical profession who saved by my life and my daughters and above all to be grateful for pregnancy and for children as it is never guaranteed or a right it is a blessing and something we need to respect a whole lot more.
    Please let me know how you are as I would love to hear how things are going. Take Care Fee xx

  • Jan Matterson
    August 24, 2011 | Permalink |

    Hi Fiona, thank you, your long journey and life experience with your tiny little girl that you have shared surely has been inspiring for so many parents going through the same thing. I think it’s wonderful support for those parents experiencing that rollercoaster of emotion of milestones and then the setbacks, predominantly these tiny prem babies are vulnerable to due to immaturity of their organs etc. A mutual friend actually sent me your website because on 27 July 2011, my daughter gave birth to my tiny grandson Brody and he was born at 26 weeks. He is such a little fighter and he has faced many obstacles with infections, lung, heart problems and latest as of last night was a blood transfusion. Still waiting to hear results of his kidney scan as he had depleted sodium levels. My daughter and her partner have endured that rollercoaster with little Brody. Yesterday morning they were celebrating Brody reaching the kilo club and then finding out he needed the transfusion. It’s very difficult also as they are from Dubbo and have a beautiful 21 month old litlle boy Connah that they miss very much and are fretful. Connah also misses them too and his other grandparents and I are sharing his care. We have been to Sydney twice since Brody’s birth and the goodbyes are very traumatic for Kellie Mark and little Connah. We are all trying to support them as much as we can but I am sure like you Kellie and Mark are getting lots of support from other parents and whole NICU team at RPA. They have been very caring. Amazing people, as you say we call strangers. I actually know what you all have been through as I also had a premmie baby girl and she was full of spirit and fought for her survival against all odds. That little girl today is now 27 years old and has 2 children of her own. The support my husband Erin and I received at John Spence NICU was wonderful and we owe Erin’s survival to them and will never forget them. Once Erin was finally released and we went home Erin spent her first 18 months in and out of hospital with lung problems and she had failure to thrive, eye and ear issues. I ended up having post natal depression and there was no support out there to help with all these premmie baby issues. Thank you for sharing your experience Fiona. I was wondering if there is a support network for premmie babies here in Dubbo as little Brody will face many obstacles after his release as he has chronic lung disease which means he will eventually come home with his own little oxygen tank. I think Kellie and Mark will need all support they can get. Could you please let me know if that support is available. God bless you Fiona Airlie and your family Jan xx

  • Jan Matterson
    September 16, 2011 | Permalink |

    Hi Fiona,
    After writing to you 24 August 2011, little Brody lost his battle for life on 7th September 2011. He was 42 days old and he showed such fighting spirit right until the very end. Brody died from an unrelated premature illness which was a bowel condition called Volvulus, ( twisted bowel). The condition didn’t become apparent until he became so sick and Brody’s surgical team did a life saving operation. Sadly little Brody didn’t make it through the surgery because all of his bowel had died and there was nothing more his surgical team could do for him. Kellie and Mark never gave up on their little man. They wanted Brody to tell them when enough was enough and that is when Kellie and Mark decided to turn the life support off. We can never ever repay or thank all his medical team both at RPA and Royal Womens hospital at Randwick enough for all they did for little Brody and the love and support they gave to Kellie and Mark throughout Brody’s treatment. Absolutely amazing people!!
    Kellie and Mark are just as amazing. We had the most beautiful celebration of Brody’s journey of his short life on Wednesday 14th September 2011. His mummy got up at his funeral to introduce little Brody to the many friends and family and also to say goodbye to their little hero. Kellie did that with so much pride, love, strength and dignity in spite of their own agony of losing their little man. Brody will live in our hearts forever
    !!
    Your foundation has given many parents the courage faith and hope to help many parents get through the most difficult times that they face having a premature baby.
    Kind regards Jan
    Again Fiona , thank you for being such an inspiration.

  • November 4, 2011 | Permalink |

    Jan I am so very sorry that baby Brody lost his battle. The NICU is such an inspiring yet sad place. I really want to thank you for being such a wonderful lady. I am really touched that you took the time to read my stories that I share. I want to send lots of love to yourself, Kellie, Mark, Connah and all your extended family and friends. If I can do anything at all to help or you are looking for support please let me know and I will see what I can find out about your region. I have to say your name sounds very familiar but I am not sure why? I did live in Dubbo for 5 years with my husband and son back in the early 2000′s so maybe we have actually met before? Thank you again for taking the time to leave these comments I truly appreciate your words and want you to know I have thought of you many times. Love Fiona xx

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