Somehow, I find myself the proud momma of an 18 month old baby. When we got married I wondered if we would ever have a baby – when we had him I wondered if we would ever get to keep him.
The last 28 months have been a rollercoaster of emotion – primarily fear and love! When I was pregnant I wondered what kind of child we would have – smart? funny? adventurous? I never for a minute imagined it would be brave, strong, my inspiration, our hero.
He has been through more than most adults, more than me or his Daddy ever have and yet he is always there trying to smile though the adversity that has become recent life, always ready for a cuddle, a giggle, a goose to pet.
So how did we get here? At 35 weeks he decided it was time to meet us, except he didn’t bank on the rigours of a slow labour and after just 7 hours he needed out – through the emergency exit! He didn’t come in to the world screaming, he wasn’t held up in the air so we could see if he had a winky or a foo-foo, he wasn’t placed on my chest for skin to skin – he wasn’t taken from the warming table to a travel incubator and whisked away from me, from us. Left in theatre and then recovery and then the ward without our baby, no idea what was going on and with only one tiny pterodactyl-like squeak to fill our hearts, the road ahead just hit a roadblock.
At 4 hours old he was diagnosed with a right-sided diaphragmatic hernia – CDH rare in itself, right-sided is even less rarely seen but then we were to soon discover that he has a preference for the unusual! It would mean an operation – providing he could hold on long enough. We had him christened at 30 hours old with our family around him, and prayed he would fight and keep on fighting. At 2 1/2 weeks he had made it to his first operation at Birmingham Children’s Hospital and we met for the first time our surgeon Mr S. We never imagined 18 months later we’d be on friendly and affection terms with him and his team.
Through 5 hospital moves – the first took 5 hours to transfer him from his incubator to the travel pod and 5 hours to transfer him back, 36 hours to recover from the jaunt – and 12 1/2 week in hospital he fought through the worst moments, he fought against the dire predictions, and he won his fight to stay with us.
He came home with a diagnosis of mosaic trisomy 12 and 18 – a combination of wonky chromosomes our geneticist had not seen previously and with no real prognosis simply a list of worse case scenarios. He came home with an NG feeding tube and 24/7 o2 through a nasal cannula for his chronic lung disease. He came home with a smile, a million toys, and a whole family already smitten with his spirit.
The first Winter – the winter of discontent in the McGee household saw repeated short hospitalisations for chest infections and bronchiolitis but we made it home just in time for Christmas in true cliff-hanger style.
Then after months of home-time we ended up back at Birmingham Children’s Hospital and spent 4 solid months there, mainly on surgical stay with a brief visit to PICU. The nurses and doctors there became my social network, our cubicle became home. Operation after setback after operation, long periods inbetween of waiting for him to get stronger, tears in the toilets and finally home…
We were back in September, we were be back in December. We will pray that we won’t be back in 2017 – so far so good!!
Through it all what has got us through is the strength of our baby, our inbetweener, our toddler and his will to keep going; to fight onwards and upwards; who has had to relearn time and again how to roll over and pull up, to cruise and to toddle; who smiled even when we knew he must hurt; who giggled for the things that entertain most babies – sneezes and tickles and puppets that talk; who has always fought his way here to his home, beyond the hospital walls to take back the life we promised him in his incubator.
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