Darcy was born on Monday, 3rd November 2008 at 28 weeks gestation, weighing only 895 grams. His early arrival was due to IUGR, a blocked ductus, and Pre-Eclampsia.
He took a breath on arrival, and then needed to be resussitated and ventilated - something that was to happen on numerous occassions over the coming weeks.
We went through the 'normal' things that NICU/SCN parents do - major infections, lumbar punctures, digestion and bowel issues, ducts (heart problems), ROP (only stage one, thankfully), and hernia (small op).
There were tears, celebrations, anxious waits, and those dreadful midnight phone calls from the hospital, but he eventually made it home after a 12 week stay, completely off oxygen, and in time for his official due date.
Our understanding was that all was well.
At about six months, I realised that Darcy was running behind with his gross development skills (walking, sitting, crawling), and commenced physio. He progressed (slowly), but progression was good, so we were all happy with that.
At 11 months I had that niggling feeling that something just wasn't right, and I returned to the hospital specialists requesting further information. I actually asked if he had CP - I had done some research, and Darcy seemed to have many of the symptoms. They said that all was well, and just keep going with the physio, and he would get there.
At 12.5 months he sat unassisted (!) just in time for Christmas, which was wonderful, and a month or so later, he started to commando crawl - using his upper body to move around the house. We were feeling much more confident now with his progress, and had stopped worrying as much.
As part of our Prem Programme, we had a 1 year old (corrected) exam. Basically, he was 15 months, but we base his development on his true delivery age, which would have been 12 months. We were told at that review that Darcy had Cerebral Palsy (Diplegia), and we would be referred to the Children's Hospital. No further information was given.
Devastated - I of couse headed to faithful google :) and started to research, with it to only end in tears! So many questions.....would he walk? would he look normal? thousands of financial questions - wheelchairs, therapy, orthopedic footwear? how will we afford to provide him with all the things he will need? would he be teased? toilet training? school? our future?
I am probably a little still in that mode, although I found a blog "give a girl the right shoes and she can conquer the world." and it gave me hope. A gorgeous little girl doing all the things she should, and an understanding of what we possibly face in the coming years.
So here I am.....blogging for the first time.....in the hope that one day, perhaps our story will help someone else.
Rachael. xo
No comments:
Post a Comment