Merry Christmas!

A perfect Christmas with our perfect family. Life is complete with Nickolas with us, its hard to believe and remember what it was like without him. Its only been 6 weeks but he has changed everything. Corny I know, but true. What can I say, its Christmas.

We passed the halfway point - he's been home longer than in the hospital! His back is healing great and his shunt it working well. This is a great relief, we don't have to be so vigilant keeping him on his stomach and off his back. He still sleeps on his belly, but his neck is so strong he lifts it and looks around.

We went for a CT and saw neurosurgery this week and got the all clear. He is peeing great and I cath him twice a day but get minimal amounts, I'm hoping when we see urology in January we can stop. He pees really well. They were also really impressed with his movement in his feet.

Nickolas aka Mr. Piggy has grown so much. 6 weeks and he was 12 lbs!! (at 1 month he was 10 lbs). He has nice huge chubby thighs and looks like a cute little chubby baby. I think he looks like Kyle, but different from how Katheryn looks like Kyle! Kyle has nicknamed him turtle and it seems to have stuck. So now we have our monkey and our turtle.

Katheryn is never very far from him. First thing in the morning and last thing at night she wants to see and kiss her Ni. She wants to hold him or touch him and likes patting his head and back.

Life is just where it is supposed to be. I can't imagine being anywhere else.
I have a new motto that I stole from a bracelet I bought at Sick Kids.

Love, Faith and Hope.

Have a miraculous holiday season and keep your family near you.
Love, Amanda, Kyle, Katheryn and Nickolas

A little speed bump...

We made it home for a whole 5 days. During that time we got into a routine, met family, went to a christmas party, and finally became a whole family. The four of us, Kyle, me, Katheryn and Nickolas.
Things were a little rough that first night feeding all the time, cathing every 4-6 hours, giving medications, trying to get him down and then trying to fall asleep to start all over again in 1 hour! Needless to say I didn't get much sleep. Every night it got a little better. But cathing him in the middle of the night is still not any fun!

Tuesday Laura and I went Nickolas' pediatrician appointment, and we found out that his head had grown 2.1 cm in 5 days! Hydrocephalus here we are! We talked to the neuro resident and sick kids, and went back in. Laura, Nick and I went through emerg and by 1am Wednesday morning we were back to our old home of 5C. The plan was for a shunt in the morning.

Spina bifida is associated with hydrocephalus (fluid accumulation in the ventricles in the brain). Most children with spina bifida do eventually need a shunt to drain the fluid. So this step was not unexpected, we had just hoped it wouldn't be needed so soon. The shunt is permanent, there is a little flexible tube that goes from the brain, down the side of his head and into his abdomen where it drains all of the fluid. You can see the bump at the side of his head, but once his hair grows it shoulnd't be noticable.

The shunt went well. It is a 45 min operation but he was in the OR for 4 hours! A little stressful for me. Finally a doctor came out and said everything went well, he was in recovery. They had put a second IV in after he was alseep and it had taken a couple of tries. Nickolas is a horrible IV start! He's gone through 7 IV's already and they NEVER get it on the first try. Usually the 3rd or so. This one took at least 3 tries! But he was asleep and they needed it. This one was in his foot and actually stayed the whole time we were there.

Recovery from the shunt was quick. He had a bandage on his head and his belly. It looks so much worse than it actually is. It doesn't seem to bother him at all. And was plan on putting hats on him for a while. Once the incision heals (its about the circumfrance of half of loonie at his hairline on his forhead.

I stayed the entire time at the hospital with Nickolas, Laura (who had taken the whole week off to be with us) lived at my house for that time and took care of Katheryn (and Kyle) so I could stay at the hospital.

We were discharged (again) yestarday. Nickolas is back to his old self. Eating ALL THE TIME - no wonder he is already 9lbs 6oz at 3 weeks! He'll eat for about an hour every 2 - 3 hours (start to start). So there is a limited timeframe to get all the other stuff done.
Katheryn has been very good with him. And she missed him, she came with Kyle to pick us up Friday and kept saying "Niii, Niii" and trying to kiss him. We will see how it goes this week, I'll have both of them, Kyle will be back to work and no family to come stay with me. We'll see when I get to post again.

Side note - this is the second time I've written this, Katheryn erased the first one so hopefully I've included everything I'd planned to post.

Home!

So we actually made it home yesterday!

Nickolas is such an amazing baby. He has gone through so much in such a short time.
His back surgery went well, it is healing (a little slowly) and he is on antibiotics. We went from being told we were staying longer becasue he had an infection and talking about putting in a picc line, to taking out the iv and going home on oral antibiotics!

The hospital stay was hectic. I didn't get to visit for almost a week because I had H1N1 (but felt fine, just a little cold). And then I couldn't drive, because of the c-section so I had to get my parents to come out and pick me up, look after Katheryn or bring her to daycare and then make our way downtown (we usually got there for 11am). On the weekend I was able to stay down there, it is interesting spending so much time in a hospital and not being sick and not working. I was glad to be home in my own bed, but sad to leave Nickolas. The only good thing was how wonderful all the nurses were and how well cared for he was, and how good he was doing.

Yestarday he had a head and abdo ultrasound, everything looked good and we packed up and (slowly) made it home during rush hour. Nickolas can't be on his back yet, so physio came and put a foam pad in his carseat and he can be in that for up to 1 hour. It takes 2 hours to get home during rush hour so we made a half way pit-stop to show him off to grandma and grandpa Ridding.

We also have a homecare nurse coming to look at the dressings and the caths. We are cathing him every 6 hours.
The first night home was a bit rough. The middle of night caths and diaper changes and feedings were not fun. The most I can complain about is that he likes to kick, poop and pee on me when I change him - and I can't even complain about that - there was a good chance he would not be able to do that.

So Nickolas is doing tremendous! He has full movement all the way down to his feet and even then he can flex but not extend him, and he can move his toes as well. This is so much better than we hoped for!! The exercises I got from physio - play with his feet.

Katheryn is in love with her little brother! - She calls him "Niii", she doens't get the 'ck' yet, but we will work on it. She also likes to pet his head and kiss him.

Introducing Nickolas

Hi Everyone,
This is Amanda's sister Laura, Amanda is still in the hospital for a few days and asked me to update this for everyone.

Nickolas was born on Friday November 13th at 12:51 and weighed 7lbs 9oz. Both Mom and baby are doing well. Amanda is recovering well from surgery (c-section) and was up and walking late last night and again today. Nickolas was moved to Sick Kids hospital yesterday and went for surgery this morning around 11:30. Nickolas' surgery is on his back to put the spinal cord back into it's normal position and close the vertebrae over the damaged area. The doctors have reported that the back surgery went well, they are just finishing up to close the opening. He should be out in recovery momentarily. Nickolas will have to lay on his front and side for the next while until the incision is healed and he should be able to go home in about 2 weeks. He is moving his hips, knees and ankles but more time and study is needed to really asses the situation.

Congratulations Amanda & Kyle on your beautiful son Nickolas!

Almost there...

So we have a new date - Friday November 13. The lucky Friday the 13th.
I was a little upset when they called the change the date - not because of the 13th, but I thought it wasn't supposed to be a Friday to make it easier for Sick Kids. So I emailed a bunch of people including the neurosurgeon and a coordinator at Mt Sinai. Everyone assures me there isn't a problem with delivering on a Friday. So here we are.

The countdown is on. Less than 24 hours to go. I'm more nervous than excited. I don't think I'll be excited until after his surgery and we're into the countdown for him coming home. But this puts us on step closer.

The nursery is done! Clothes are put away, decals are up, paint is dried, floor is down, crib is together. It looks great! Exactly how I pictured it. Katheryn keeps trying to 'move in'. She keeps bringing clothes into his room! We also moved her rocking chair in there, so she keeps trying to climb on that (which she totally ignored when it was in her room).

So all the bags are packed. Care for Katheryn and Sammie are arranged. Important numbers are written down and we have a bunch of stuff and food for the hospital stay.
I think we are as ready as we can be.

Stay tuned!
Laura will update this weekend and hopefully we'll get some pictures up.
For now please just wish us luck and keep us in your prayers!