Fragile Miracle :: Ava's progress

Little Ava is now seven weeks old, which brings her to just a gestational age of 37 weeks. Its been a while since I last posted Elle's update on her experience with a premature baby, here is the long awaited second update. Read her first story of Avas birth here and her first update on Avas progress here. 

...Enjoy...

"So much has happened since my last update I am not sure where to begin, Ava is now 7 weeks + 3 days old and her gestational age is 37 weeks + 1. She has progressed so much its hard to keep up with her! She reached the 1800gram milestone we were waiting for and has now flown past it (She now weighs 2230grams or 4lb 13oz) The day I went into the hospital and they told me I could bath her, clothe her and try her on her first bottle was amazing.

Bathing a newborn for the first time on your own is insanely scary but with Ava I was petrified, what if I held her wrong, what if I got water in her feeding tube, what if she got too cold. In order for me to bath her they disconnected her breathing monitor, this scared the hell out of me, she was asleep when I began to put her in the bath and I couldn’t see if her stomach was moving to make sure she was breathing. I actually hated giving her a bath for the first few times, I was so uptight and nervous all I wanted was to get her out and back onto the breathing monitor. It was very hard for me emotionally, constantly thinking 'this isn’t how its supposed to be', these milestones are meant to be fulfilling and make me happy but they weren't. Instead I was comparing them to my experiences with Harley as a newborn and how I believed I should have felt.

Within a week Ava had reached 2kgs, this is 'going home weight' and the midwives started putting things in place to prepare her for coming home, she was having every feed through her bottle and the feeding tube had finally came out! It is so nice to see her beautiful face without tubes or anything attached to it! The doctors then made the decision to take her off her caffeine (which prevents sleep apnea) but her monitor remained on for another 48 hours. Then her monitor was finally removed. She was even more perfect. Just this tiny, peaceful sleeping baby she looked ‘normal’ and was well and truly on her way home.

In my last update I spoke about Ava’s brain scan and the fact that there was a mass on her brain, I knew that there was something wrong however doctors believed it would disappear. It hasn’t and it won’t. Ava has two cysts on the left side of her brain which has caused permanent brain damage, the cysts will effect her motor skills in her legs. We wont know how severely if at all and the doctors cant and wont tell me much more other than we have to wait until she starts to walk to see how it will effect her. So we are taking her for regular MRI’S.

Finding out that Ava does in fact have brain damage has killed me, though everyone keeps telling me there is no point worrying about it now. Nobody seems to quite understand the pain or the worry or the guilt that I feel. If you have children have a look at how beautiful they are, how perfect and truly amazing they are and feel how much love overwhelms you then imagine having someone tell you they have permanent brain damage. It feels like your world has crashed around you, Ava is perfect to me and it will not change anything for me. But it will for her, what if she can’t walk properly or has to wear leg braces, how can I protect her from being picked on in school if it is something that can’t be helped with physio?

Tuesday 10th of May I walked into the hospital expecting to speak with doctors about Ava’s brain scans to be meet by the discharge nurse, she told me I could finally take my baby home. 5 long weeks of travelling an hour everyday into the hospital to see my daughter, constant worry, guilt and tears. I was finally walking out of that hospital with my baby! It was so nerve racking she seemed so safe in the hospital but I couldn’t be happier, I cried carrying Ava out of the front entrance to the hospital and putting her in our car, she was coming home, (6 weeks early than doctors had expected) where she belonged.

A whole new challenge has now begun of being a full time mummy with two children. I’m exhausted everyday, Harley is as full on as any normal 20 month old boy is and so is Ava. She is waking every 3-4 hours for a bottle and I generally wake in between her feeds to make sure she is ok. Harley has started waking up again in between Ava’s feeds and can take a while to settle.

I wouldn’t want to be any where else; I have my two babies’ home where they belong. I love being a mum, it is the hardest most rewarding job in the world. We still have a long way to go; MRI’s, neonatal checkups fortnightly until Ava reaches her ‘corrected age’ (due date), plus physio appointments, eye checks and regular newborn appointments. But we will get there.

The biggest thing I have learnt from this is to be grateful, to love and be loved and don’t sweat the small stuff or things that are beyond your control. I love both my children with everything I have and while it kills me I cannot have another, I am so grateful to be truly blessed with such adorable healthy babies and I hope you are too."