Wednesday, April 21, 2010

Sebastian's first 5km race...

Sebastian is gearing up for his very first ever 5km race at this year's Mother's Day Run. Now, he's done a few races already, the kids race at Disney (200 yards), the Mother's Day kids race (about 100meters), and his longest to date was last year at the Okanagan Marathon where he did the kids race of 1.2km (although preparing for that he ran 41km so that on race day he actually had run a whole marathon). But this year, he wanted to race with me in the Mother's Day run. This race is very special to us because they raise money for Neonatal Intensive Care, and Sebastian was a preemie who made very good use of the NICU unit. I know that we've told his story many times before, but here it is again for anyone new and for anyone just wanting to feel inspired, because believe me, he's an inspiring little guy!! Here's the link to Sebastian's pledge page if you want to make a donation:

On March 24th, 2006, Sebastian was born into this world via an emergency c-section after an ultrasound revealed he was very sick with fetal hydrops and was likely not going to make it unless he was born that day. We rushed to the hospital and bumped a bunch of other people so he could be born right away. It was such a scary event!! Before that day, I was wondering how in the world I was ever going to deliver a baby, yet on that day, didn't even have time to stress about it, as I was prepped and in surgery so quickly so they could get him out. He was intubated almost immediately and aside from a very brief stop where they held him up so I could see him (thanks Jeremy for asking them to do that), was whisked off to the Neonatal Intensive Care Unit at Foothills. This began a whole new world for us. Jeremy headed off to be with the baby while I went to recovery for surgery. I was given a polaroid picture of Sebastian and that was it. My legs were frozen so I couldn't walk to go see him. But he was really too sick for visitors anyways!!

Eventually though, I was taken down by wheelchair (I also had a broken leg you see). I washed my hands and headed into the unit. He was so tiny, weighing only 830 grams (1lb 13oz). And he was hooked up to so many machines. It was really quite scary to see the first time. I believe at one point he had 9 different IVs going. They poked him in the head, arms, legs etc. He was on drugs to paralyze him so he couldn't fight the machines. He was on drugs for pain. He was on a fat drip. He was on drugs to help with his blood pressure, other drugs to help with his heart. When they did rounds it took forever to go through all the stuff that was wrong with him. The list was long. The first weekend they kept adding more machines and switched him from a conventional ventilator to the oscillating one. Then they added nitric oxide. He was at the maximum settings on everything (for example, you can't get more than 100% oxygen). There was nothing else they could do. If he didn't start improving, there was nothing else that could be done. And, miracle of miracles, he did improve, and slowly, they could start changing the medicines and try to wean him off stuff (many of the meds are really not that good for you in terms of side effects etc). At one week old, he suffered a huge set back. He had a bowel perforation. It required emergency surgery and although he'd been weaned off the nitric oxide and oscillating ventilator, he was back on both again. It was a scary day!! After that though, he started improving and when he was 17 days old, I got to hold him for the first time!! I'll never forget when they placed him on my chest and he just snuggled in and slept. After watching him struggle day after day, it was amazing that I finally got to hold him, to touch him, to just be his mom.

He continued the road of a NICU baby. He had ups and downs but slowly grew and a month after he was born weighed one kilogram (2.2lbs). He got to experience a whole new set of milestones. No more bili lights, getting off a ventilator, then getting off the next ventilator, weighing a kilogram, his first dirty diaper, getting the different meds weaned. Getting into an isolette (once he was stable enough to be behind glass), getting out of an isolette (once he was able to hold his temperature), getting off oxygen, being IV free, being feeding tube free, being apnea free for 24 hours, going for his first ambulance ride (moving to PLC, six weeks after he was born). Finally, spending the night alone with his parents and no monitors, and then, taking him home.

It was a long road in the NICU, but he was amazing through the whole thing. He certainly gave us a few scares, but fought on. He was a little super trooper the whole time. He's amazing!! After coming home, he ended up back in the hospital two weeks later for eye surgery and hernia repair surgery. It was scary seeing him intubated again, but two days later, that was done and he was home again. He's had some complications from his early arrival, but for the most part, he is a thriving little four year old. He's sweet, loves to cuddle and loves to run. He loves it, the running. He loves getting out his runners, putting on his Garmin watch, even though he doesn't know what any of the numbers mean, having mini races, pretending to be cars racing down the highway, pretending to be an airplane or HWC1. It's non stop with him and it's just so much fun.

Every day I am so grateful he's with us. I have so much fun hanging out with him. Everything, from building trains to running together, to playing with water or making something in the kitchen. He's got an incredible zest for life and is just curious about everything. His imagination is fantastic and he's a little sweetheart!!

But, it all comes back to the NICU and the fact that without that unit, and the incredible nurses and doctors that work there, he wouldn't be with us today. He was incredibly sick and had a lot to overcome in addition to just being early. So always, we will be grateful to the staff at the hospitals for saving our son. He is a NICU graduate and soon, he will be a proud finisher of his first ever 5km race. The Mother's Day run raises money and buys specific equipment for the unit. As a child who used some pretty specific equipment during his stay, I know that this stuff makes a huge difference to the kids. So, please, support Sebastian in his first ever 5km, in a race that means more to him, than he even realizes at this point!! Here's the link again to his page...


Daisy Montego said...

I just read this because my friend posted that she needs an emergency c-section and I had to Google "fetal hydrops." So glad that he is healthy. Hoping the same now for my friend. If you believe, please pray for her! Thanks for your story!

911shazza said...

I will certainly say a prayer for your friend. Hydrops is so scary. We were very lucky with Sebastian. It was a very tough beginning for him but he is almost eight years old now and doing well for himself. If your friend needs support, there are a couple Facebook groups for parents of hydrops kids. There are some sad stories but some miracle stories as well. Lots of people who have been down this very rare hydrops road that can speak to different treatments and things. All the best for her little one.