Fragile Miracle :: Ava's progress

Did you read Elles story on the premature birth of her daughter Ava? (Read it here) This is Elles first update on little Ava's progress in the Neonatal Intensive Care Unit and her ongoing emotional and physical experience with a premature baby.

...Enjoy...(With tissues in hand)

"Well what a week it has been! Ava has had some huge improvements and also scared the hell out of us.
She has now been moved to the special care nursery (SCN) which is the last stop before home, however she will be there for at least another 4 weeks.

She is having 3 hourly feeds of formula as I'm not getting enough milk for her and she is waking up for her feeds crying. This is a HUGE milestone as it is an important factor of coming home. She is still being fed through a tube at this stage but once she hits 1800grams they will try her on a bottle. She has put on 180grams in 4 days and now weighs 1650grams! Ava is also now in a heated water bed rather than a humidicrib, this helps her maintain her temperature. She is wearing a beautiful little pink hospital gown (about the size of a cabbage patch doll top) .

We cannot wait for Ava to weigh in at 1800grams it's a magic number in NICU and SCN, this means she can wear clothes, go into a normal cot, be tried on a bottle, go onto 4 hourly feeds and have her first bath! At the rate Ava has been improving I couldn't help but get the feeling that something was going to hit us out of nowhere... And it did.

When Ava was born she had a bleed on her brain (stage 1 bleed, 1 being the best and 4 being the worst). With premature babies a routine brain scan is done on day 1, day 7 and day 28 so the bleed was picked up on day one. They did her Day 7 scan and the bleed had not spread which was really good news however, she had a white mass above the bleed. Where the mass is situated is over her motor skills part of the brain.

Doctors came and spoke with me and what they had to tell me absolutely killed me. A lovely doctor crouched down beside me in the chair and slowly told me that Ava may have possible brain damage... my heart sank. I felt like everything around was closing in on me, I just burst into tears. I have no idea what they said after that, I was a complete mess. So many thoughts were running through my head and I couldn't stop blaming myself...How could I possibly do this to my beautiful girl? What have I done so wrong in my life that I'm being punished through my daughters suffering? I just could not get my head around any of it, I didn't understand and because I couldn't remember what the doctors had told me I was very confused. The news was shattering because she had been going so incredibly well! 

After I had calmed down I asked to speak with the doctors again so they could explain everything to me. A Doctor came back in the afternoon to speak with me and she was absolutely lovely.. She let me cry and tell her I didn't understand how I did this to Ava and what it all means. Was my baby going to be able to walk? Talk? Be a 'normal' little girl? She then explained to me how the mass could in fact disappear and be nothing or it may turn out to be Cerable Palsy (CP). I became hysterical I could feel my heart breaking for Ava. My love for Ava will never change no matter what but when the Doctor said CP all I could do was picture Ava in a wheel chair, being picked on at school, never being able to walk...I felt so guilty. What kind of life had I made for my child? 

I was completely naive, I had no idea that CP was such an 'umbrella term'. It could be something so small like running on her tip toes when she is a toddler or having to try twice to pick something up with her left hand. We have had a follow up brain scan and the mass is still there, however the Doctors are not as concerned now and believe it's going to just go away. The thought is constantly in the back of my mind...What if they missed something? The other heartbreaking decision I have made was to put Harley into childcare 3 days a week. I have been criticized for this decision and been made feel like the worst mother in the world. It was an awful decision I had to make but I need to try find a balance with my 2 children. They both need me, they both demand my attention in different ways and most importantly both need to feel loved by me. Harley absolutely loved his first day at 'school' I dropped him off at 9:30 and as soon as we walked through the door he was off playing. I said goodbye, got into my car and cried my eyes out and didn't stop until I got to the hospital. I felt so guilty. I feel bad enough that I'm forced to leave Ava everyday and now I'm making the conscious decision to leave Harley.

I have become incredibly skilled at every morning doing my hair, make up and putting on my poker face and doing what I need to be doing for my family. I pretend that I'm ok but reality is I'll never be ok while going through this. It's not just leaving my tiny perfect baby in the hospital everyday or leaving Harley in childcare, the thought is constantly in my mind that I will never be able to be pregnant again. I feel so cheated and selfish that I couldn't carry Ava full term. I'll never experience the first kick or hearing their little heartbeat for the first time again.

I know I'm incredibly blessed to have two beautiful children but this feeling is shattering. I cannot put it into words. I sincerely hope everyone who can safely have a child do so and love, nurture and protect them. Be grateful and look at them everyday and realise just how lucky you are."

Fragile miracle.

I have a really wonderful circle of mothers I talk with regularly on Facebook, we share our stories and give advice, it's something I really appreciate and enjoy. One of these wonderful ladies was pregnant with her second baby, she is the same age as me and we went to the same highschool. I loved hearing her updates on her pregnancy progress with her unborn baby girl. When I learned that she had gone into premature labour, I was shocked, worried and nervous for her. She asked if she could share her experience and story with me and with you all, of course I said yes. As I read her draft e-mail I had tears running down my face...What a brave, strong woman.

This is Elle and this is her story...enjoy...

"My name is Elle I am a 'stay at home mum' to my beautiful 19 month old son Harley, A partner to an amazing man Matt and a 'NICU mum' to my gorgeous little Ava who is currently in the neo-natal intensive care unit (NICU). I wanted to share my story not only for my own benefit of letting it out, but also for those who may have to go through the NICU experience in the future.

So I'll start back to the day my waters broke.. 
April 4, 2011 at about 10am when I was about to vacuum my waters broke. At first I thought I had wet myself but quickly realised it was infact my waters breaking. Reality kicked in that I was only 29 weeks pregnant and I began to panic! I rang Matt screaming at him to come and get me then rang my mother-in-law to come and get Harley. I wasn't calm, I couldn't focus and couldn't find my hospital bag (I hadn't packed one as I hadn't planned on going into labour so early!).

The trip to the hospital felt like a lifetime and all I wanted was to hear my babys heartbeat. When we arrived at the hospital I realised that not only had my waters broken but I was also bleeding. I finally got to the maternity/labour ward and the lovely midwife strapped the monitors on my belly and I could hear my babys heartbeat.. The relief I felt was unexplainable and I was able to relax a little. They put a drip in and started antibiotics to fight any infection and also medication to stop my labour long enough so I could have 2 steroid shots over 24 hours (which matures a babies lungs quickly). Doctors and midwives came and went and I was exhausted. Every Doctor had a different opinion; I was told my labour would be brought on after the steroid shots had time to work, That I was going to stay in hospital until I was 34 weeks. I was incredibly upset and confused, all I wanted was to go home to my son as I had never spent more than a night away from him. I had a panic attack.

I was a mess on Tuesday (5/4/11) and was moved to the maternity ward. I wasn't allowed out of bed, I hadn't seen Harley, Matt went back to work (with my encouragement) and I remained locked away with nothing to look at but four white walls... It became a quick downward spiral in what seemed to be depression. I was a wreck and very irrational.. Matt would bring Harley in after work Tuesday and Wednesday, it was so hard to watch them leave!

On Wednesday night I began getting cramps. I was given pain killers and I was able to get a full nights sleep. I woke Thursday morning feeling very uncomfortable and felt like my waters had broken, obviously this wasn't the case and after checking I came to the scary realisation that I was bleeding heavily. Shortly after, I began getting contractions every 3-5 minutes and they slowly intensified....It took the Doctors two hours to decide to let me continue into my labour and give birth. At about 7pm the contractions were every minute and incredibly painful! With Matt by my side along with my best friend Renee I went through the hardest time of my life! I ended up having gas and after 9 hours of labour had only dilated 2cms, the Doctors decided to give me oxycotan to try to help me dilate and with this my contractions became unbearable. I was exhausted and knowing I wasn't making progress made it very easy to 'give up'. At around 1am the Doctor decided a C-section had to be done as my babys heartbeat was slowing. There was one more woman in front of me going in for an emergency C-section so it would be at least an hours wait for me to get in. Luckily I had an amazing midwife who demanded I was taken up first... I owe that midwife my life aswell as my daughters.

At 2:50am on Friday the 8th of april, Ava Sarah Daley was born weighing 1580grams. Her cry was so tiny but she cried and hearing that was incredible. She was so tiny yet absolutely perfect! They took Ava straight to the NICU and Matt went with her. While I was in recovery the Doctor who performed the C-section came and spoke with me, He advised me that if I had tried to push or if they had waited to do the C-ection my uterus would have ruptured and Ava and I would have died instantly. There was alot of damage and I am no longer able to have any more children. So laying in recovery alone without my baby wondering how she is and then being told I can't have anymore children...I just felt like giving up!
I was taken back to my room and waited for news on Ava ... Minutes felt like hours and finally Matt came in to me and updated me on Ava's progress. She had to be ventilated as she couldn't continue breathing on her own...All I wanted to do was see her and hold her. At 1pm (10 hours after she was born) I was able to see my daughter but because of the drugs in my system I nearly passed out in the NICU and was rushed back to my room. The same happened when I tried to go back to see her that night. It was so heartbreaking but I was determined that the next day I would get up and shower and see my baby...And that I did.

This is where our NICU experience begins and what is now my daily routine. Seeing Ava for the first time, I just stared at her for hours...so much dark brown hair. It continues to amaze me that even though she is so tiny, she is perfect! Ava continued to improve every day for the next 3 days. She had her ventilators taken out and a 'C.P.A.P' put in (Continuous Positive Airway Pressure). It's a treatment that uses mild air pressure to keep airways open whilst asleep. After 24 hours on C.P.A.P, I held Ava for the first time...It was so scary, I didn't know how to hold her or where to touch her. Her tiny little hands had drips in them and she had cords and monitors on her body everywhere. Even though I was so scared the instant bond I felt with Ava was amazing. I was worried I had lost the chance to bond with her because I wasn't able to hold her but relief rushed over body as soon as I did.

Ava continued improving and was taken off the C.P.A.P on Sunday and put onto 'highflow', which is basically forced air so she was breathing on her own but had a bit of extra help getting air in. While I was holding her On Tuesday morning they took her off the highflow and she breathed on her own- No monitor! She did perfectly! She continued breathing on her own once she was put back into her humidicrib. Ava also had jaundice and was under lights for a week which meant holding her was limited to an hour a day maximum.

In the first few days everytime a monitor made a sound my heart stopped but now I know a 'good beep' from a 'bad beep'. I was sent home from hospital on Tuesday, four days after Ava was born. Such a bitter- sweet experience...I was so excited to go home to my little man but so heartbroken to leave Ava in the hospital. I felt like the worst mother in the world! What kind of mother just leaves her new baby in hospital? What kind of mother chooses which child is more important? I was hysterical when I walked out of her room knowing I was leaving her. It was however, made easier going home to Harley...I cannot even begin to imagine how parents cope going home to an empty house.

So now my day consists of mornings with Harley then about 4-5 hours in the hospital with Ava. I ring NICU 3 times during the night to check how Ava is and first thing in the morning. I am expressing every 3-4 hourly as Ava has a feeding tube. We also live 45kms away from the hospital so travel is a big pain. I struggle everyday with finding a balance between time with Harley and time with Ava...I feel completely torn. I love both my children with everything I have, this experience is the hardest thing I have ever gone through and I can't wait for the day we get to bring our daughter home. I'm trying to just take each day as it comes and hope that the next five weeks fly by..."

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I would really love to share with you Elle and Avas progress in the Neo-natal Intensive Care Unit and share with you their precious milestones. Keep an eye out for more posts on this beautiful, couragous lady and her tiny Ava.