A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Nickolas' Story

Nickolas' story began when we found out we were pregnant about 2 weeks before Katheryn's first birthday. To say I was surprised would be an understatement. I had been breastfeeding Katheryn up until the month before, was getting ready to start work again, and was on the pill! But God had plans for us. Oh boy, did he have plans for us!
Everything was going well. We had the IPS test (blood tests and ultrasound that are supposed to predict certain birth defects), and waited with bated breath until we got those results back - Negative. Thank God! (We'd had a scare with Katheryn, with a 1 in 7 chance of Trisomy 18, but then had a negative amniocentesis).

I felt much more comfortable sharing our pregnancy news after getting those results back.

Our 19 week ultrasound came and went. We were having a boy! I left the ultrasound excited, but a little disappointed in the pictures we received, not at all like what we had gotten with Katheryn. But whatever. 
I saw the doctor a couple days letter, it was a routine appointment until the end. He told me that there was nothing to be worried about, but they couldn't see part of the brain (the cerebellum) in the ultrasound. The IPS test had been negative and should have shown if there were any problems.
So after 2 weeks I had an appointment downtown to get a second level ultrasound.

A level 2 ultrasound uses a better machine and more experienced technicians and is targeted to explore specific concerns. All I could think of was for it not be anacephalic (another type of neural tube defect where the cerebellum is actually missing, and a baby cannot live without this). I spend 2 hours being ultrasounded and I was given this picture of my baby and the news that he had spina bifida. To read more about my diagnosis experience you can go here.

We were told that our baby had spina bifida, which was a neural tube defect. I was told that in Canada you can terminate up until 24 weeks, so we had 2 weeks to decide what we were going to do. But spina bifida meant major physical disabilities; paraplegia, diapers, dependence as well as mental disability. WHAT?!
We spend a whirlwind of 2 weeks talking to doctors and getting tests to find out what we were going to do. Because when a doctor encourages you to terminate, it makes you step back and consider what they are talking about.

This is the picture of our MRI. You can actually see the myelomeningocele - the medical term for spina bifida. If you look down at his bum, there is a white line along his back that you can see coming out - ta da! That is where his lesion was.
A lesion is the term used for the part of the spinal column that is missing and where the cord comes out of his back. Nickolas' lesion is at S1. To learn more about spina bifida and some of these terms you can look at my other blog "I want to Learn About Spina Bifida".

After talking with doctors who actually knew what they were talking about - a pediatric neurosurgeon and a developmental pediatrician at the spina bifida clinic, as well as finding an online support forum for families, parents and individuals with spina bifida Spina Bifida Connection, (which is now a facebook group United by Spina BifidaKyle and I felt that we knew what we were doing. We decided to continue with the pregnancy and have never looked back!

The pregnancy was by far the hardest part. All we knew were possibilities, all we had were if's and maybe's. We didn't want this! We wanted for-sure's and we know's... The pregnancy was balanced between anxiety for the future, wanting to hold my son and worrying about what he would face when he wasn't safe and comfortable in my belly.


I was scheduled for a C-section at a downtown hospital Mt Siani, which is right across the street from Sick Kids, and shares a special underground tunnel.
 
And on Friday November 13, 2009 Nickolas arrived! His crazy parents are all steriled up and ready and waiting to get their first cry!
 
This was one of the first pictures I saw of him. I did get a quick glimpse when he was whisked off to another room, but I sent Kyle over to take lots of pictures and show me. The saran wrap is holding a sterile dressing in space over the lesion.
 
We got to have a quick cuddle before I had to go to the recovery room.
I was feeling fine and didn't want to go. But unfortunately a c-section is a major surgery and they have rules about that kind of thing... (always the L&D nurse trying to break the rules).
Little did I know, this was the last time I'd be able to hold him for over a week!
My father and sister were able to sneak into the room and see Nickolas as well. He went immediately from the resusitation room (a room beside the c-section room where they could stabilize him and get his ready for transport) and right across the street to Sick Kids Hospital.
Everyone who saw Nickolas was under strict instructions that they had to take pictures and video! Yes the video was just of him lying there, maybe making some cute newborn noises - but it let me feel closer to him.

Nickolas went over to Sick Kids, 5C the neurosurgery floor. He got IV, bloodwork and some other tests to prepare him for his first surgery the next morning. My goal was to be up and out of bed to go across and visit him before his surgery. Yes in the back of my head it was also in case something went wrong, I want to see him.
This was in the time of H1N1 flu. And I developed a cough. Well, long story short, it appears I caught H1N1 the previous Monday when I came downtown for my OB appointment (and got the H1N1 shot).
 
So I was on contact precautions, and I had to stay in my room, visitors were supposed to wear masks and I had to wear a mask when I pumped, I started Tamiflu and could not visit Sick Kids. And I was so close, and yet so far away from my Nickolas. It was countdown until my round of Tamiflu pills were done so I could FINALLY visit! In the meantime I had pictures, video and recent surgery to remind me that yes, I had a son.
I made sure someone visited every day. Kyle got to feed him, deliver milk and have some cuddles. In the day and age of the internet and camera phones I could get copies of the pictures as soon as they came. But I did not get the chance to see alot of the immediate medical problems. All I got was the cute baby pictures (not that I'm complaining about the cuteness).
The neurosurgeon and all of the staff let me call any time of the day and night. Before, during and after the MMC (meylomeningecele) closure surgery Dr Rutka, his neurosurgeon called me and kept me informed. The lesion was open (I'm not sure if it leaked or not) about 3cm in diameter, flat and oval. He was very satisfied with the closure, and plastics were involved in the closure. I didn't realize until later that his scar was unusual - it's an '|\|' shape just above his bum.
 I did not see what the lesion looked like, I never thought about asking someone to take a picture. I've seen lots of pictures of them online, and I will admit that I was a little afraid of seeing his. But now I wish I'd see it, or had a picture. Oh well.
 
I had all the pictures of Nickolas with me, trying to get a glimpse of his face, who he looks like. All from a picture. He was moved from the acute care area of the floor and into his own room. I have learned that he'd become a favorite of the nurses. He was not alone, he wasn't with me, but he was right where he was supposed to be. And I was just counting down the days until I could come see him.
 
Then the day arrived. The day I was cleared to go. Cough under control. Tamiflu done. Nickolas was going to meet his mommy!!!
 

The first time I held him, I had to sit down and the nurse helped to position him in my arms.
It is very nerve-wracking not knowing how to hold your child. All the connections you need to keep in mind and try not to pull. The nurse helped me position him, but by the end of the day I was slowly turning into a pro. He had an IV, foley catheter and monitor. He couldn't be on his back and had a large bandage covering his incision. We personalized his room as much as we could, a baby blanket, socks, hats, his dragon and his sleeptime bear. And when he could wear sleepers I was on a mission for cute, button, no-elastic, 3 month sleepers! No boring hospital gowns for him!


On November 27, when Nick was 2 weeks old, we were discharged from the hospital and able to go home!
Nick couldn't be on his back for more than an hour for the ride home. We had a little foam pad in his car seat to keep pressure off his back. We had home care coming for the cathing and dressing changes. We were cathing and he had an extensive dressing and antibiotics.

Nick's back incision had gotten infected, but was reacting well, and only a small area was giving us problems. But we were still good to go.
And ready to show Katheryn her baby brother, and Nickolas his big sister!!!

(We had decided all along that we would keep Katheryn away from the hospital so she wouldn't be scared or upset, and there would be the least amount of impact on her schedule.)


We made it home for a full 5 days before we were back in the hospital for a shunt. Nick's head grew drastically between the time we were discharged and when we saw the pediatrician. He called Sick Kids, talked to the neurosurgeon and we were on our way for a possible shunt. Looking back over these pictures, I can see it. I just look at that picture and think, wow look at his head. THAT is what hydrocephalus looks like. His head looks so big. But at the time I couldn't see it. And he wasn't showing any of the symptoms I was supposed to be looking out for.
Packing a quick bag for Nickolas for the hospital, we really knew that it wasn't really maybe he would need surgery, so I packed to stay. Luckily my sister had taken that week off to be with me, so she drove us downtown and stayed with me through the ER visit until we were back at 5C at 2am.
This time I didn't leave his side. I lived at the hospital for the next couple of days. Slept in the rocking chair at the side of the bed that first night and then when we got moved to a room I moved everything around until it was like how I wanted it and slept on the parent bed.

A quick ultrasound first thing in the morning and we were prepped for shunt surgery. We signed up for a medical trial where they use ultrasound when they place the shunt, to see if there is a lower rate of shunt failure. (Hand me info about a research trial and I'll sign right up!)
 
My father stayed with me during the surgery. We were told it would take about 30 min for the surgery. Well he was in there for 2 hours!!! To say I was a nervous wreck would be an understatement. The reason for the long time? Getting a second IV in before the surgery. The IV Nickolas had going in, was his 2nd after 4-6 attempts, and his 7th IV in many many attempts in his 3 short weeks. I'd call him a hard IV poke.
 
All that waiting and worrying and he came out great!! Good thing he got the 2nd IV because his first one blew in the recovery room. The room that I got lost trying to find. They helped me to get there, then I left to get something and couldn't find my way back.
 
But Nickolas is a trooper!

The shunt is just above his temple, with the tubing running behind his ear and down to his belly. There is another incision beside his belly button. Poor guy!

I stayed with Nickolas throughout his hospital stay. No travelling back and forth, I had to get my head around staying 24-7 in the hospital. Not a nurse, and not a patient. You get over standing in front of a room full in doctors in your pj's at 6am rounds, or walking around in your slippers because its more comfortable.
 
This all happened the beginning of December. One of the things I had someone bring to the hospital was my little stereo and speakers. December 1 means Christmas music comes out! And I had holiday PJ's that I got to dress Nickolas in. I had a number of people come to our room and say how festive we were!
 
We were told we would be staying longer than the 3 days, and then suddenly we were discharged home! He was good, his shunt was good, his back still had some leaking but they were satisfied that that was good. Katheryn finally came to hospital to see her Nii and take us home!

That was the end of our hospital stays (that first year). It was all just appointments, tests, monitoring, watching, waiting and worrying. Nickolas spent the first 6 weeks on his belly. I was comfortable eventually cutting down his large dressing to a smaller one and then New Years Day I decided that he was ready to be dressing free!

He had 6 weeks of being off his back, with creams and dressings and watching the leaking and infection in his back heal and improve. Finally in 2010 he was allowed on his back, and at 2 1/2 months we got the all clear for him to wear pants. You can see my post about that here. Since then he has not had any restrictions in movement and can be carried around, tossed about and cuddled like a regular boy!! That is such an amazing feeling!

Nickolas' story continues, but this is how he started. It is a story about him, and about me.