Matilda's monthly progress

4 Months

At 7 lb 8 oz, Tilda weighs the same as an average newborn, when in fact she is four months young today. As much as her protracted neonatal stay was crucial, I found it psychologically gruelling and emotionally draining. It was twelve long days before John and I held our fragile girl and an additional twelve weeks of tearing ourselves away each night before we finally brought her home. This move wasn’t made without trepidation, especially because she still requires help to breathe via a nasal cannula hooked up to an oxygen cylinder. Despite this, she has settled in better than I’d dared hope, largely due to her daddy being off work for the school summer holidays and providing superhuman levels of support. We’ve filled our days fending off cooing old ladies in the park, dodging projectile vomits, forging new friendships with fellow preemie parents and welcoming old friends and family round for overdue catch-ups. We’ve bonded, burped, cuddled, cooked from scratch (a novelty after months of living on microwave meals), wiped unspeakable things off walls and climbed plenty of others, especially when Tilda developed conjunctivitis and required five visits to A&E in one week.

More challenging still is her diagnosis of Auditory Neuropathy Spectrum Disorder (ANSD), meaning that no sound is passing between her inner ears and her brain. There’s no point in sugar-coating this – as a musician, hearing is the sense that elevates me above any other and the prospect of not being able to share this with my only child devastates me. At present we’re in limbo, but I live in hope that subsequent testing will shed light on the profundity of her hearing loss and indicate the best approach to tackle this rare condition. I look forward to getting some answers in the weeks to come and also to Tilda’s sleep study which will gauge if she is robust enough to come off her oxygen support. If so, this means we can finally venture out without looking like we’re wearing proton packs!

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