Well I am honored to have been asked to be a “Guest Blogger”!
Thank you for asking Terri, and I hope our story may help someone out there!
Where to start???
Well I am a Wife, Momma And a Sister to 3 very awesome Men!!!
My Husband & I Struggled with Infertility for a few years before conceiving our Son with medical help.
My pregnancy started off amazing! I loved every single second, the nausea thrilled me because We had waited “so long” for that baby.
Everything was smooth, ultrasounds showed a slightly “big” baby but my Husband was 11lbs 4oz so we were expecting fairly big.
At about 28.5 weeks I started to have insane back pain. I honestly thought it was due to being pregnant, and we were helping close friends prep for their wedding the next day. So I thought i had over done it.
Next day was their wedding and we were there until about 3am- So I figured I would spend Sunday doing nothing. Which I did, and the pain would not go away.
Monday August 20-2012 I couldn’t bare it any more, Hubby convinced me to at least go to the doctor, maybe they had a pregnancy friendly pain relief or something.
So he took me to our local Emergency Room and headed to Canadian Tire (I guess he thought as I did, its just pregnancy)
I got hooked up to the NST and then the DR came in, did a quick cervix exam as apparently this back pain was actually contractions, and i was 4 cm dilated!
They then called another Hospital about 2 hours from home, and I was admitted there, still 4cm dilated and on bed rest now.
Fast forward to later that week, they sent me to a specialist hospital and found out i had Polyhydraminos and had way to much fluid, baby wasn't processing it well and was “swollen with fluid”
This hospital was a bad experience for us. I hadn't felt baby move in 3 days and they said that was “ok” and sent me back to the 2nd hospital i was at.
Once I arrived there I told them I hadn't felt him move in 3.5 day sand they freaked out. Had a ultrasound the next morning (as it was evening when we got to the hospital i was transported via ambulance)
The Doctor came in after the ultrasound, and Sadly I will never forget her words
“Your Cord is not working properly, it is pushing fluid out and this is the last thing we see before infant mortality- we need him out now!”
I was 32weeks and 3 days pregnant. I had gotten the steroid shots at 29
Soyyer was born via Emergency C Section Friday August 31st 2012 at 306pm weighing 7lbs 8oz- sounds good but he was too big.
He was born blue, not breathing and was recessacated via CPR and instantly intubated after they got him breathing.
I seen him for about 15 seconds at most. I went to recovery and my husband went with him.
I cant go into all the details about that night, simply because i am not emotionally ready to yet, but basically I was able to go to the NICU at 10pm and “see him” from a wheel chair looking up at this lifeless body with insane amounts of wires and tubes- and then being told he was being transferred to a different hospital that was LITERALLY Across the road from where they discharged me from the DAY BEFORE! I was mad, angry, upset, beyond scared, nervous, hopeless and the list goes on.
They Stabilized him enough by 3am and got to the new hospital at 5 am.
Long process short, Soyyer spent 49 days in the NICU, we were blessed with a room at the local Ronald McDonald House and finally brought him home on Oct 19-2012
Life was good for a little while, except it was weird, he NEVER slept. And that's not an understatement. The most he EVER slept was 40 minutes in a row! and when he was awake he was crying, unsoothable, and sweating.
We were at our Family Dr and Pediatrician 1x a week each= 2 dr appointments a week.
He was not gaining weight
He was not thriving.
They told me he was colicky….
We had a follow up appointment at The Hospital For Sick Children in Toronto for a sedated Echo- as we knew he had a murmur but were told it would most likely go away.
They told us the test would take 45 minutes maximum and to go enjoy a coffee and come back.
So we did, they still weren't done and now there were 3 technicians instead of 1 and they all looked concerned. They said they wanted to inform the doctor of what was going on and to “not go anywhere”
Once the doctor came in, they said he was being admitted as he was actually in heart failure and was moments away from Cardiac Arrest! His little heart was going up to 283 beats a minute!!!
We spent a week there, stabilizing him on medication and learning how to check his heart rate, pulse etc. it was beyond scary, we thought the bad part was over.
We have learnt also now that Soyyer has a rare Genetic Condition Called
LEOPARD Syndrome-
Which is causing his Hypertrophic cardiomyopathy (HCM)
He is currently medicated and we go to SickKids often for Check Ups- next one being December 9th, please pray for good news.
We have also started a Fundraiser this year for the NICU I couldnt Imagine being there for Christmas, so we are bringing them the money we raised as well. You can donate online via our SickKids Portal
So we just go one day at a time, I push past the anxiety fear and helplesness (as I cant Fix it) And embrace every second with him! He has surpassed his white matter brain damage (From being without oxygen for an unknown amount of time) And started walking on Nov 16-2013
All Babies are Miracles, Soyyer just a bit more :D
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