Life in the slow lane!

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Following Dixie’s hospital discharge in early March, we collected a couple of professionals to add to our ever growing list.

Her surgeon. Although we wouldn’t have regular appointments, we were due to see her as an out patient three months later. The plan was also to remove the temporary gastrostomy that had been placed during surgery as an anchor to her stomach.

We also picked up a lovely community nurse. Her role was to support us in the home with the up keep of the gastrostomy button,  to keep an eye on her incision site and monitor her weight and general well being. Another temporary support, but one I welcomed. I’m squeamish. And a bit pathetic  with all things woundy, bleedy and gooey.

The gastrostomy site needed quite a bit of looking after in the beginning. And as an added surgery extra that I hadn’t expected, I found it difficult to touch and clean. But I had to. And it did get easier. The community nurse was great to have at the end of the phone when I was being a neurotic mummy.

Within a few weeks, Dixie had really begun to pick up in herself. Although she still felt very limp and weak, and most of the strength she had been building up over the previous months was slipping away. She had started to roll again. Unfortunately this in itself caused issue following surgery. Her wound opened from the constant rubbing on her gastrostomy button, and became sore and bled. In the end I had to place a cushion at her side to prevent her rolling.

You can only  imagine how hard this was for me. Here she was, going at it guns blazing and yet I couldn’t let her. She needed that time to recoup. To recover and to heal. But no matter what I told myself, it was a huuuuge step backwards. Huge! I felt powerless.

A couple more weeks passed and I needed to get some power back. She was almost 10 months old by now and her gross motor skills were hugely delayed. This worried me. And made me increasingly anxious.

So I did the only thing I could think. I chased appointments with her developmental team. I chased physio – which at this point we still hadn’t had, despite being told it would begin in January. I chased Mrs OT and Play. And I chased Speech.

I know it sounds mad considering she had just had major abdominal surgery, but I felt helpless. I felt useless. I couldn’t just let the rest of the muscles deteriorate.

I’ve previously mentioned throughout her hospital ordeal, she had picked up a new skill. Holding objects and generally using her hands more proficiently. This was a big step forward, and one I wanted to develop.

My chasing paid off. Mostly. Mrs OT and play came out within a couple of weeks and were mighty impressed with Dixie’s new skill. They left me lots of positive feedback and advice.

Physio was another story. Another blog!!

What’s also important to mention about March is its Trisomy awareness month. With it being the third month, trisomy being a third chromosome.

It was also rather timely that my sister and her friend Laura had offered to run 10K for a newly established charity. The T9M Trust. And even more so that this run fell on the 10th March, one day after trisomy 9 awareness day, and three days after Dixies hospital discharge.

I was thrilled. Being completely unfit myself and with no extra time to get fit, it felt wonderful that they had thought of us. We of course went to town, in the sense of having special T-shirts made up and going along to show our support. The whole family, including the grandparents as papa L was still with us from Scotland.

And they did brilliant, especially as it had only been my sister second 10k run and she was a bit of a newbie runner.

This run had also become a bit of a important part of our story. It was this reason that I had found the courage to make Dixie’s diagnosis public. My sister had come up with the idea of the run the previous December. I had waited as long as possible before ‘outing’ Dixie in mid January.

It was a big step. It was a scary step. But the response to my ‘big’ news was actually pretty disappointing. I’d built myself up to spilling the beans and hardly anyone even acknowledged it. Despite this though, sponsorship came flooding in.

Over £2000 in the end. Including a huge donation and the sponsorship of our T-shirts from Daddy L’s employer.

So it was worth it. It was worth telling the world about Dixies extra chromosome. And it felt like a huge weight was off my shoulders 🙂

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Imagine….

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Imagine falling pregnant without trying. And it being the worst possible timing but the best possible news.

Imagine bonding with that tiny person in your belly. Feeling it move and kick and excitedly planning its arrival. Finding out it’s going to be a she. A baby sister for your first born.

Imagine the day she is born feeling on top of the world. Then the next day being told matter of factly she has a heart murmur. And she has ‘funny’ ears and a ‘funny’ chin and that her chromosomes might not be how they should. You agree to a blood test, with the results being several weeks.

Imagine at two days old your baby is taken to another hospital for a heart echo. You watch her leave without you in a huge incubator and a private nurse. You wait anxiously for several hours till you’re reunited again. The results are repeated back second hand via a different doctor.

Imagine when discharged, leaving hospital with a big fat question mark over your baby’s head.

Imagine at home using your sleepless nights to google syndromes night after night. Trying to find something but hoping for nothing.

Imagine getting that hospital call four weeks later and knowing that the genetic results would be there.

Imagine at that appointment being told her results weren’t normal. And what had been found was so incredibly rare even the pediatrician had to read up on it.

Imagine being told your baby may lead a normal life or that they may not. Coming home from that appointment you feel disconnected from your baby. Numb. Shocked. Sad.

Imagine those precious first months with your newborn. Instead of funny poo tales and cluster feeding nightmares, they pass in a flurry of hospital tests and appointments. You’re counting down the months and wishing them away, in place of answers.

Imagine living in a bubble of confusion. Of learning medical terminology and becoming an expert at mastering an ‘I’m ok’ mask.

Imagine as time goes by instead of answers at appointments your left with more questions. You live your days in a kind of limbo. Over time the professionals involved with your child increase. And so does your diary.

Imagine the worry. It’s there in the pit of your stomach laying dormant till they cough, choke and go blue. Till they vomit up after every meal for weeks. Till they lose weight or don’t gain enough. Till they develop strange behaviours or symptoms. Till there’s talk of future surgeries, tube feeding issues, infection worry. Or till the next review, or appointment, or results. You never fully relax.

Imagine watching your child slow down in progress despite everything you’re doing. Some days you just want to give up because its frustrating to live through day after day.

Imagine the mixture of joy and sadness as you watch your child’s amazing little friends move on and progress. While your child remains the same.

Imagine more and more equipment coming into your home. As it becomes ever clearer you’re child needs more support. More care.

Imagine there’s a night out planned, or the chance for coffee but your mindset is not there. You just can’t shake off your last appointment so you don’t go. You feel yourself withdraw in order to refuel. And leaving your child takes careful planning so isn’t always doable . Or maybe it just slips your mind. You have so many things to remember, to organise, to order. A social life is the first thing forgotten.

Imagine wanting so desperately to talk about it. To be honest about how things are so others might understand. But you can’t. You don’t know where to begin some days. Others it’s just too overwhelming.

Imagine when you go to bed at night on top of the usual worries, your kept awake by questions that can’t be answered. Will she walk? Will she climb? Will she say ‘mummy’? And when those questions don’t plague you, others do. Awful ones that you couldn’t ever repeat.

Imagine trying not to think too far into your child’s future. Most are desperate to keep their children young, but you’re wishing for yours to develop into a big girl.

Imagine you don’t feel like you quite ‘fit’ anywhere.

BUT….

Imagine you were given a gift. The most perfect, wonderful and life-changing gift that you could ever be given.

Imagine how grateful you would be despite all the hurdles and all the worrying times.

Imagine knowing despite each and every struggle, your baby gives so much more back.

Imagine how brave she is. How she keeps fighting on despite so many odds being against her. Just to smile and to laugh.

Imagine that such a small body of a person can give you so much strength. Enough to carry on day after day.

Imagine you realise how lucky you really are.

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