Nate's Journey: Immediately post D-day

The next few days were a blur. In fact the next two weeks were a blur.

Mum and Dad came around the next day, once Mum was cleared to leave hospital. We all had a cry. We were absolutely devastated. And disbelieving. Nate was so healthy and doing so well - growing well, and starting to hit many of his milestones. It just didn't seem possible.

For us all, the next week or so was incredibly challenging.

For me personally, those weeks were full of thoughts, which I have since heard are absolutely typical in such a situation, but were incredibly disconcerting at the time. I was full of 'what ifs', 'what nows' and 'why us'. Platitudes of 'these things happen for a reason', 'you don't get more than you can handle' and 'Nate was meant to find us', seemed complete rubbish. I was angry, devastated, and I was grieving.

At first I spent hours holding, cuddling, feeding and talking to Nate, just basically willing it not to be. I couldn't stop thinking of the things that he/we might not have together in life. I'm not sure how many times I cried those first two weeks, but it was a lot.

And then I spent literally hours on the Internet researching chromosomal disorders, T9M, and every medical symptom and term that I came across along the way. I have become an 'expert' on stuff I never cared to know about - hypotonia, scoliosis, food pegs, kidney dilutions, Cpap etc etc. I found and joined a variety of closed Facebook groups globally and within NZ, and trawled through post after post to learn as much as I could. I found the other two families in New Zealand and made contact. One told me it would get worse before it got better. That didn't seem possible either. I read blogs of people who experienced similar shock diagnoses on their kids. I found poems that talked of the challenges for parents of special needs kids (see Welcome to Holland, and Getting out of Amsterdam Airport references below). I found articles on Huffington Post written by mums and dads whose children were living with a variety of disorders and the impact on their kids, themselves and their families. They were concerning. I hounded the hospital to bring our appointments forward. I hounded the Child Development Team for help. Basically, I sought to get some control over a situation that felt entirely out of control.

After two weeks had passed, I had it more together. For me, knowledge made it that bit easier.

To be fair, Robin had adjusted more quickly. He had been a rock right from Nate's early arrival, through all the challenges of NICU and Nate's growth issues, and was even more so in this week. His mantra was you can only control the controllable, and that there was no point spending time on 'what ifs'.

At that stage, only my parents and Robin's Dad Roy, knew - they were so supportive, and so absolutely committed to Nate and to us.

Around that time we made the decision to tell our siblings, all of whom live in the UK. It had to be email, as it was still just to hard to talk about. Just too raw. And once that was done, things started to get a little bit easier again. While they are all a long way away, we had their support.

Not long after that, we saw the Genetics Team, in an appointment that had been brought forward for us. They empathetically told us what we already knew, referring us to the Unique article, and to the fact there were two other families in NZ. So no magic chromosome remover there.

Then around mid-July we saw our Developmental Paediatrician, Dr Rosie Marks. By then we were prepared. Now some of the things we had seen with Nate earlier on, seemed linked. These things were by no means exclusive to a T9M diagnosis, but fitted.....his prematurity, the fact he was IUGR, his low birth weight, the hearing loss in one ear, a clicky hip, undescended testes, and his poor feeding.

I had a copy of the Unique article for Dr Marks and had made a list of every possible symptom of T9M, what we knew of Nate, and what action was now needed to check further. For example, some T9M children have obvious brain abnormalities, but Nate had had a recent MRI which had given an all-clear, so no action was needed there. However we didn't know about his heart, or his lungs, or his kidneys....and so on and so on.

Dr Marks was great - she took the list, had a read of the article, and has since set about making it happen for us. Over the next few months Nate will be checked out every which way possible. And then we will know exactly where we stand. At least medically. Developmentally there is no way of knowing - all we can do as a family is to do all that we can to help him to reach his very best potential. And that is exactly what we intend to do.

Somewhere along the way, we heard of a NZ photographer referring to kids with extra genetic material as "superheroes". Taking photographic images that showed these gorgeous wee ones at their best. A positive spin on the 'my kid has more chromosomes than your kid' (nah-nah-nahnah-nah :-)). It resonated with us.

Nate had proven himself to be SUCH a battler in making it this far - he had stopped growing in the womb at 30weeks and was struggling prior to the emergency c-section at 33weeks, he had battled low platelets since birth, had struggled to feed/grow for about 15 weeks, struggling with what we later found out was hypotonia (weak suck), and yet STILL managing to grow. He was now hitting quite a few of his developmental milestones. He was smiling, chatting, recognising faces, and fast becoming a real little character. Our little man is absolutely a superhero :-)

This blog will tell Nate's journey - of a superhero called Nate-star......