Your Brother had done very little to prepare us for a poorly child, he’d not once been ill in the 9 months prior to your birth. We left ward 10 of UHND skipping with positivity, marvelling in the miracle of life. Only to return somewhat nine months later anticipating your eager arrival. The car journey to hospital with your brother was full of excitement and readiness – and even though he arrived three weeks early, we were both mentally and physically prepared. My pregnancy APP had told me that he was officially ‘full term’ and had done all the growing and developing he’d need to in my womb. The car journey second time round was not so clear cut. The feelings we experienced were completely worlds apart! With you, there was so much to fear, so much at stake of losing. We were told there was a chance you wouldn’t survive and although we were compelled not to believe this would be our reality, we couldn’t deny that this could be our truth.
It took 5 weeks before we could skip down the corridor, focusing positively on your future. 5 weeks of getting to witness just how miraculous growing life could be. We physically saw your eyes unpeel, your lungs grow stronger. In a conflicting sort of way, it was a privilege to see. Once those 5 weeks were over, we had visions of plain sailing from then on out, to wave goodbye to UHND once and for all. We had visions of routine check-ups going exactly as the should…no hiccups, no complications, no more reasons to worry.
I wished for this so much.
Your 1st Year of life saw us returning to hospital almost as much as we were away. Your lungs just didn’t seem ready to cope with any common childhood bug you encountered. I spent many nights watching the sats machine, praying you’d turn a corner. I sat in the darkness of the hospital room, feeling all too uncomfortably familiar within my surroundings. The smells, the noises, the chaos and commotion just felt so much like the beginning of your life. I started to feel as though maybe this was just going to be part of your jaggered journey.
Almost as quickly as I admitted that, you suddenly seemed to flourish. Your lungs appeared to be coping with the demands of toddlerhood, we rarely used your inhaler and started to believe you were over the worst of it.
That’s not to say your trips to the Hospital came to an end. During this time, we came to realise you had Cerebral Palsy. The MRI scans, blood tests, kidney scans, hip X-rays, hearing tests and optometrist appointments just seemed to replace the late night ventures to A&E. on top of your ECG scans and routine paediatric visits, we began to see regular physio appointments, hydrotherapy, and occupational health. We became more aware than ever that UHND was always going to play a role in your childhood. This, however, all seemed manageable. The trips were expected and planned, we knew when you were going, how long you would attend and always that you’d be back home in time for bed. Most appointments were promising and we left with a sense of direction and confidence in your consultants. You were moving in the right direction. Every visit, every scan or X-ray shed some much needed light on how we could get you to where you needed to be. The familiarity of the hospital ward was certainly diminishing.
Then you turned two and things just seemed to turn upside down.
You even started your 2nd Birthday poorly! We awoke on the 30th November 2016 to find you covered head to toe in Chicken Pox. You were irritable and understandably agitated but like we’d grown to expect, you appeared no different to any other toddler. It wasn’t until two weeks after your Birthday – a week before Christmas – that the late night rushes to A&E returned to our lives.
Since then, we seem to have visited more than ever before. Your lungs which we once rejoiced over maturing, no longer seem to tolerate any additional pressure. You’re susceptible to chest infections as a side effect of your large ASD (something I had hoped we’d have sorted by now), when your chest is infected, your lungs just can’t handle the strain. I’ve watched you work so hard to breathe that it’s rendered you incapable of speaking. I’ve held your listless body in my arms – agonised by your intercostal recessions. I’ve listened to Doctors tell me you have Asthma then tell me again that you haven’t. There always seems to be a battle whether it’s viral-induced wheeze, Bronchiolitis or Pneumonia which has knocked you down. Lately, they’ve branded around Chronic Lung Disease as if it’s not something that should scare me witless! I’ve heard them say you need a consultant then walked out of the hospital doors so maddened by the lack of progress on this front.
You’re two and a half now and I’m so exasperatingly ready for that plain-sailing part of your journey to start. I want to be able to take you to a park on a sunny day without fear of hearing that wheeze. I want to take you to ballet without feeling guilty that the exercise is too much for your lungs to handle. I want to wake up on a rainy morning loving the possibility of spoldging in puddles – not feeling the dread that the humidity will change your temperament.
The uncomfortably familiar surrounding of the hospital ward no longer sits well with me. Surely, it has to be time to move on!
P.S I’m forever grateful for the care and attention Siena receives from UHND. The staff here are beyond miracle workers, keeping me sane one admittance at a time. Thank you for your hard work and support xx