Saturday, April 30, 2011

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."


  1. Elle, your story is so bittersweet. My heart aches for you and I cannot imagine how difficult it would be to see your child is such a vulnerable state. But at the same time, the immense love and hope that shines through you is incredibly uplifting. I just hope you don't honestly blame yourself for Ava's premature birth. Some things are completely beyond our control. Thank you for sharing. My thoughts are with your family and gorgeous little Ava. x

  2. Oh Elle, I can not send enough Love to you, Harley, Ava and Baby Daddy. You are so strong and amazing, please find comfort in all the people out there that are following Ava's progress and praying for you to all have the most amazing outcome.