Hello! I am sorry that I have neglected my pre-trip. Let's just say that llife has been very busy of late. The boys started back to school last week, which went well, but is always a rude awakening as we return to routine. We are also adjusting to a change in the household, as our nanny of 9 years is no longer working with us - the boys are adjusting well, and I've seen some changes in Douglas, who is really happy that I am working less and at home with them more. Definitely a good decision.
Our other big project is our upcoming renovation. We are making our house fully accesible for Mark. Maybe I'll tell you more about it another time, but the most unique element will be the elevator - now Mark will be able to get everywhere independently! (Oh, and I am going to give up schlepping laundry up and down stairs!) While it is fun to work with someone to plan the kitchen, the thought that we must purge, pack and move out absolutely everything - and prepare for a relocation for 5 months...is daunting. Oh, and did I tell you that all this packing etc will be happening before we leave for Mark's Wish Trip?!?!?
Anyway, I was pulling together some pictures for a panel discussion I was participating in at the University of Toronto (on parent-centred care, something near and dear to the special needs parents!). It made me think I'd give you a little background into the early beginnings of our mirable babies' lives.
First, Peter and I tried for about 6 years before we became pregnant with the boys. Eventually (after trying meds, insemination and IVF) I was diagnosed with premature ovarian failure. Yes, at age 34, I was already post-menopausal! While this was devastating, we eventually realized that it was a blessing to have a diagnosis. We knew what the options were, and we knew that we were committed to becoming parents, whatever way we could - either adoption or by ovum donation. We did chose ovum donation, and thus, I became pregnant with the twins! We were THRILLED!!!
Of course, multiple birth pregnancies of any kind bear an added risk of prematurity, and as you know, the boys were born at 26/40 weeks. They each weighed 2lbs, 1 oz and they were 14" long. Yup, like 2 lbs of butter, but as Peter described them looking like chickens. The most adorable chickens in the world.
If a picture is indeed worth a thousand words, this should save some time (and remember, this was just when we were all starting to get digital cameras, so some of these are scanned in):
Here's Mark:
and Douglas:
And this gives you a good idea of their actual size:
Yup, we've come a long way, babies!
We had what is simply described as a "typical" course in the NICU, of course it was super-sized because we had 2 babies there. Typical NICU, but drastically different from our vision of the boys' birth and joyful arrival home. Trite as this sounds, it was a rollercoaster ride, joyful days of small gains countered by days of devastating setbacks. Let's face it, after the crash cart has been called because they think your baby may need it, your perspective on life changes forevermore. After the doctor tells you your baby has been bleeding around his brain, they don't know how bad it is, and you should talk about and decide what you'd like them to do if the ultrasound confirms the worst, you know what a "hard decision" really is. (Thankfully, it was the best possible news. Oh, and what did that doc say immediately after encouraging us to talk thourgh the scenarios? "Well, this testing is going to take a while and it's almost lunchtime. Maybe you are hungry and you should get something to eat." Hungry? After THAT news?!? Well, we didn't eat, but when we returned, the first of our angel nurses looked me straight in the eye and said "I'm not allowed to tell you the results, but just know this, it's alright. Look in my eyes. It's alright." And I knew it would, because she was crying too. And I knew I could trust her. We still run into her in the hospital, and she still tears up when she sees Mark. That was the first day she saved his life (it was she who had called the crash cart), and it wouldn't be the last.
On the other hand, when you have waited 10 long days, hoping that your babies would survive, seeing them with tubes and monitors and IVs and ventilators and only being able to touch them with your hand through an opening in the incubator...aching to feel like a "real" mother, and that day God sent another angel nurse. She was a seasoned pro who breezed into the room with a fresh view on what the babies needed, and what I needed too. She spent a little time getting to know me, then said, "Well, Mum, have you held either of your babies yet?" I hadn't at that point, because they hadn't been stable enough but also because I didn't have the vision or courage to ask myself. I felt utterly without control. When she heard that I hadn't held either boy, she was on a mission. She asked someone to cover for her, sought out the attending to get the OK, and then amassed a team of 5 other people to help. With 4 nurses, a respiratory technician and an extra nurse as photographer, I held one of my wee babies - it was Mark, for Douglas was still too fragile - and smiled for the camera. Just like a "real" mum.
And we stayed like that for 8 wonderful minutes. Later, we adopted "Kangaroo Care", when we would cuddle the boys skin to skin. It became a Friday night ritual. We'd go out for dinner and come back for as long a cuddle as the boys come manage.
While Mark had the dramatic events, it was Douglas who just didn't seem to be progressing well. We developed a list of "bad things that happen to you when you are extremely premature" and he just seemed keen on ticking off all the boxes! He'd take us down the path, worry the @$#$ out of us, and then, just when it seems that a major medical or surgical intervention might be needed, he'd pull back and improve. Potential heart surgery, eye surgery, threat of intestinal blockage aspiration pneumonia and so on...and don't get me started on the vicious cycle of intubation/extubation/intubation etc!
There were still some lovely moments, like when the nurses surprised us with their first (out of the womb" "twin moment":
And then there were more:
As it turned out, Mark came home after 103 days in the NICU, Douglas followed him after 111 days. We knew there were still medical issues for both boys - they both needed hernia repairs, and both needed close follow-up for lung and eye issues. Still, the team was very pleased where they were developmentally.
It was tough at home as the boys adjusted to their new circumstances, and we adjusted to all the work! Tough, but joyous...finally, we were a family. We slept little, cuddled a lot. And we went to lots and lots of clinic appointments, then started lots of therapy to help them develop. It was after a few months that we realized that Mark had issues that were emerging. He was very fussy, was WAY beyond the "big spitter" that apprently Bowen babies are known to be. And his body moved in a very different way than Douglas. He seemed to want to plant his feet and "stand." Was this early attempts at standing? Was he ahead of his brother or was this unusal spasticity?
Eventually, at a pediatrician vist, I found the courage to ask the question: "At what point are we going to acknowledge that Mark has cerebral palsy?" He looked at me gently and said, "Well, I guess we just have. And we'll tackle this together."
And that's when we realized that our journey as parents had taken a big detour. Now we were determined to learn all we could about CP, its impact on Mark, and how we could support him to develop in all ways.
Well, this was going to be an uplifting take on our family beginnings, but it's starting to bring back some rather intense memories. The boys are turning 10 soon, and we've all been through so much in those 10 years.
And how are we gonna celebrate?.......We're going to Disney World!!!
I'll try and post more soon!
Blessings,
Alison
