Hospitals, lack of sleep, the battle that seems never ending.. Those are the words used to describe these months. Multiple hospital admissions for various reasons means minimal sleep. Ashana has had 2 more lumbar punctures (4 in total now) .. At this point she went for a scope down her throat and an MRI to check for Alexander disease under general anaesthetic... As she is so little she needed to be incubated as she couldn't breathe on her own, this meant another stay in Critical Care ward with 24/7 monitoring. The struggle was real, the realisation that this is our life now and we have to try adjust, juggling hospitals and 2 other children... One who just started school.. Finding our feet seemed absolutely impossible. I was broken, absolutely crushed and shattered . But, we survived.. Possibly with a caffeine addiction - but we got through..
From here Ashana was working 3x harder then the normal child to breathe and could no longer feed properly on her thickened fluids, her aspirating was so bad she was to high risk of pneumonia or infection from aspirating so at at 4 months they decided to put an NG tube in for all her feeds. This means no snuggles while feeding her, no rocking her to sleep in my arms at night singing to her, none of that one on one bonding. She now had a special tumble form chair to feed in that had her at a certain angle... A machine now fed her instead of me. This was heart breaking but at least she was getting fed.. Having a tube fed baby is a whole new world, we were now realising that our life is never going to be the same.. What astounded me the most was random strangers comments...
'Shes too fat to need that tube' 'She looks fine, why does she have that ugly thing out her nose'.
If you ever see a baby or anyone for that fact with a tube, always remember people are battling a hard battle underneath the brave bubbly smile - no matter the age.
With the tube came weekly hospital assessments with Speech, along with various visits when little miss decided to pull out her tube. Again - this was another hard emotional battle having to wrap her up and hold her down while a tube goes up her nose and down into her stomach.. The emotions were real. .
Ashanas scope showed on top of everything else she has Laryngomalacia - Laryngomalacia is a congenital softening of the tissues of the larynx (voice box) above the vocal cords. The laryngeal structure is malformed and floppy, causing the tissues to fall over the airway opening and partially block it. This now meant surgery is pending.
Our wins are that her Repeat EEGs came back that she has no damage from the seizures in the brain. She has learnt to smile and giggle which makes it all worth while.