Airlie Fae's first few days in NICU premmie baby born at 27 weeks gestation

13/04/2006 I am only just getting around to doing Airlie’s story now so I will try to recall and use the diary that I had in the hospital during the time Airlie was there. It may take a little time but I hope to get it all on here in the near future. It’s a little hard to type for a long period of time one handed typing can take some time, Airlie loves a cuddle and so do I!!!!!

Airlie was born due to me having Pre-eclampsia and HELLP Syndrome.

Airlie was born on the 6.1.06 at 9.09am at Royal North Shore Hospital Sydney by C-section under a General. Airlie was 27w5d gestation that making her 12 weeks and 2 days early. She weighed only 861grams or 1pound 14ozs. She was 35.5cm long and her head was 25.3cm around. She was not breathing when she was born and was intubated (tube down her throat) and taken to the NICU (neonatal intensive care unit) I was in ICU for a day and a half so I did not meet her until I after I was stable. I will try to get Adrian to write something about the first time he meet his daughter, sorry can’t promise anything though.

I remember seeing the photo of her for the first time. She was wrapped in plastic and she was a red/pink colour. There were tubes from her belly button and she had a tub in her mouth, she also had her eyes covered with the little photo therapy glasses.
I met Airlie for the first time when she was a day and a half old. I was taken in on a bed as I couldn’t walk. It’s really fuzzy. I remember seeing the humidicrib and this tiny little body inside it. I pulled myself up to see her. This was my wonderful small little girl who shouldn’t be here and had to be born because of me. It is scary to look at all the machines around her and hearing the beeping was so strange like a world you will never imagine or understand until you go through it yourself. It didn’t seem real seeing her like a dream, she was so tiny. I was afraid to touch her she seemed so fragile. The nurse who was looking after her was so nice, her name was Reecia.
Adrian had told me that a really nice lady who was Chinese was the first to look after Airlie. Her name was Ester. She was the tiny Chinese lady whom I remember talking to me while I was being prepared for the c-section. Ester brought Airlie back to the NICU, she became a very dear friend of ours along with Suzanna and many of the other nurses

Adrian and I were trying to think of a name for her, we had Airlie or Amelia for first names and either Maree or Fae as the second. At the time it really didn’t seem that important almost trivial to be worried about a name. I know it’s important to name your child but it seemed quite silly at the time to be taking up our time with her name. As you know now we ended up calling our beautiful girl Airlie Fae. We took our honeymoon in 2003 at Airlie Beach and I though it was a wonderful name and it also had meaning to us as we really enjoyed our time there, so that’s where Airlie came from. Fae was my nana’s second name but she was know as Fae. My nan passed away when I was only 7 and I always wished that I could have gotten to know her so much better. The memories that I have are truly wonderful and also in respect to my mum as well.
I didn’t get to hold her that day I could just stroke her with my finger and even then I was afraid to touch her. You could never imagine how it feels not to be able to hold you child. I think it has to be one of the worst things that I have ever experienced in the world. When Airlie was 3 days old I got to hold her for the first time. It was so emotional the best thing in the world!! She had her tube from her throat removed and CPAP (continues positive air pressure) which is two nasal prongs that have long tubes attached with air pressure coming into them. I cried I cried I cried holding her made me feel a little more like her mum. I felt like her mum before but not being able to pick her up like you would with a term bub can make you feel a bit like an onlooker and having her in my arms was the best. At the start it’s like the baby isn’t yours. You come and go asking all the time if it’s okay to do this and that.

The nurses and doctors were wonderful to us the best ever!! They involve you in the care of your child as much as possible once you take a breath and start to understand what is happening you become a huge part of the team looking after your child. We are indebted to them forever.

Adrian had to leave on the 4th day as we had been in the process of moving from the Central Coast to the Central West for his job. My mum and my uncle had moved us the day before Airlie was born to Orange and Adrian was already past his start date with his job. Airlie was given a good report from the docs so he had to go so we had something to go home to. Adrian got to have his first hold that day as well. I missed half of the hold as I had to go back to maternity to get my central line out. When I got back they were having a wonderful cuddle and they looked so beautiful together. I was so angry at the world for him having to go. We still had to survive but she would miss time with his precious girl and I need him as well. The day he left I just cried. I was left there by myself. I was just able to move from the c-section and really pushed myself so I could see Airlie other wise I would have to get nurse to push me back and forwards to maternity.

On day 4 she had her umbi line taken out and a long line put into her leg. It was a lot safer to have that then the umbi line as umbilical lines are much more susceptible to infection. This is how Airlie was receiving all her nutrients so it was very important .Airlie started having 1ml of expressed breast milk every 4hrs, she was handling that well so they decided to feed her every 2hrs.

10.1.06 – day 5 Airlie had not tolerated her milk so she went back to nil by mouth. When they told me this I was devastated by this. It is quite normal I was told by a really nice doctor who sat with me and explained how premature babies can have problems with their guts. I just sat there watching her in a daze, with Adrian having to go to work and my mum taking Mason with her I was worried about my girl and missing my boys terribly. I spent most of the day in quite a bad place. I spent time in the cafe just sitting by myself it was like I was depressed now or something now that I think back to it. Lucky for me I had a wonderful friend Meg who came to stay with me. She stayed for a few days. I am so grateful to her for coming to stay with me.

I was discharged from hospital 6 days after having Airlie. I stayed at the Rotary Lodge across the road from the hospital. It was a small room with 2 beds, a TV small kitchenette and small bathroom. I stayed in the Lodge for 5 and half weeks. As the hours turned into days and the days into weeks Airlie became bigger and stronger.

She has a PDA aka duct which has not closed and started to give her problems when she was 3 weeks old. She was give a course of meds that did decrease the size from 2.5mm to 2.0mm Over those few days I worried so much It was a constant state of holding my breath. She was seen by cardio who will see her again in the future. All she seemed to do those days what desat and it was the worst ever time from 90 to 60 all over the place she went as low as 30 at one stage which really scared me. Desaturation is the level of oxygen in blood.

We had some issues at home so I really pushed for Airlie to be transferred to the hospital in Orange so I could be close to home. There were no beds in Orange so we were sent to Bathurst with the thought of being there for a few days maybe a week. I think we should have stayed in Sydney. I know why city people think we are backwards in the country because we have nothing here (they are right!) I couldn’t believe some of the things they were trying to do. Airlie had been in a h/crib all her life a controlled environment with temps between 28 and 33 and they wanted to pull her out the day we got there and bath her in a big bath. I just flat out told them NO. We were also taught in Sydney not to put your breast milk into glass this was also one of the things they tried to do and I told them NO. I didn’t make many friends there but as I look at it I wasn’t there to be their friend I am my child’s advocate and if I don’t talk up who will??? Airlie had been there a few days and she got a suspect infection I was sick with worry and I wished I had never gone there. We stayed for 3 weeks waiting for a bed in Orange. In the end we were discharged from Bathurst. Airlie was 6.5weeks when she came out of the humid crib. I now know that it’s not the hospitals fault for they use what they have on hand but OH MY GOD once you have had the best such as Royal North Shore you dont ever want to experience anything else.

Miss Airlie was discharged on the 6.3.06, 2 months after she was born. She weighed 1760 grams she was 40.5cm long and her head was 31.2cm around. Airlie had her hearing test which she passed as well as her eye test for ROP. She did have a level 1 of ROP in Bathurst but was given the all clear a few weeks later at the eye doc in Orange.

At Airlie’s pead check up she was found to have a hernia in her groin. WE went to Westmead and she had her op on tue 21.3.06. She had some bradys and apeonas but other wise was fine. She took a little while to feed again properly. I was so scared about going there I was terified that something was going to happen. While we were there she did get a burn from her oxysimator which i wasnt happy about . She seen the Cardios and they said she still had the duct and they will see her again during the year. They also found that she has a leaking valvue and will check that again as well.

So all this has turn into quite a long story sorry about that but it was along haul for us. I know we are lucky, Airlie had few hurdles. I am ever so grateful to my mum and my family. I am also grateful to my husband and my son who are my world along with Airlie.

I want to say a HUGE THANK YOU to my Mum and my Dad. Especially you Mum! You helped us out so much words are never enough. To my 3 brothers and their families Thank you all so much all your support was really appreciated. To all the people who rang my parents, asked about Airlie, sent gifts and cards thank you so much. When you have a premature baby lots of people dont know what to say so it seems not to say anything at all. You feel you want people to be happy for you as you still have had your baby. People are not sure what to say or don’t send anything for fear that the baby would die. This I think just makes it harder on the parents. We want your support and we want people to be happy for us. We may not have had the regular text book pregnancy and birth but we do have a beautiful baby girl who needs your love and support as we do too. Along our journey we have met people who didn’t get to bring their babies home but we choose to support them and know that we would want our baby to be celebrated as they do theirs. Just remember if you know someone who is having a baby tell them to read about PE and HELLP go to this site www.appec.org.au support them if you can we need more info out there to help others who are pregnant right now. I will not allow babies to die because of lack of information available. Also go to austprem and support them too. They are a support network for prem babies and children so if your a family member of a prem sign up and support them they need it. If you pregnant or thinking of becoming pregnant go to www.birth.com.au this is a great info site (they also have a book for sale at bookshops) and you meet lots of different people and make wonderful friendships too.
I also want to say thanks to Tracie-Lee member from www.birth.com.au  She visited me quite a few times and I consider her a true friend. Zoe and Kim also from birth.com I also feel like a have a very strong bond with you guys. It’s amazing that people don’t know and are not taking Pre eclampsia or HELLP syndrome seriously and yet 1 in 10 people get this and there is no education about it. We were all members of the same site and ended up having PE and HELLP within a month of each other. You guys know what I am going through.

Airlie is now so big well 5lb 5ozs!!!!! a long way from the 861grams she was born.
she had her due date last monday(3.4.06) and she is now 3 months old.

Thankyou all so much for taking the time to read our story. I think for some reason this was suppose to happen I am not sure why but I know that if this had not have happened I would not have meet the people I have met online and in hospital.
I dont look at our experience as a bad one. I do worry that there are not resources readily available like books from bookstores and clothing of a small size. I have had to buy so much stuff online and even then its hard to find. Airlie is 3 months old now and she is not even into 00000 yet which mind you are hard to find as well. Maybe a little more thought has to go into resources for our early babies because as tech gets better more babie survive .
13/04/2006
I also forgot to add that while Airlie was in Royal North Shore a wonderful nurse named Suzanna took me out for lunch and then to a movie. This was so wonderful of her she truely is an wonderful person. Thanks so much for being a great friend I really loved spending time with you and always loved chatting with you.