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!

Friday, December 25, 2009

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

Sunday, December 6, 2009

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.

Monday, November 30, 2009

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.

Saturday, November 14, 2009

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!

Thursday, November 12, 2009

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!

Saturday, October 31, 2009

Happy Halloween!



Everyone dressed up this year - even Nickolas!
For those you don't know, when I was pregnant with Katheryn, she dressed up as an Easter Egg! (in-utero of course).
So what do you do in October? A pumpkin of course!
Laura came and helped do my belly up.
Katheryn reused her costume from last year and was Lady from Lady and the Tramp. She fit it better this year. No trick or treating, she liked playing with her cousin Madison. Next year she might be able to eat some of the candy - so we'll wait until then.

2 more weeks to go for Nickolas - I'm starting to get nervous (like I wasn't before). And we are trying to plan what help we need for the weeks he's in the hospital and after. But I'm not sure what I'll need. You can't complain about having too many people who want to help. I just wish I had a plan, and I have no idea what to expect so I can't plan anything!

Monday, October 26, 2009

And we have a date!




November 16!
Ultrasound and doctors visit today went good. Everything is on track. He's estimated to be 6lbs 12 oz now - bigger than Katheryn at term! I had a talk with him before we went about moving around. He didn't move that well at the last ultrasound, so he cooperated this time. He even had the hiccups for part of it, and kicked a couple of times.
Everything is coming together.

We got Nickolas' room at painted. It is an especially great design (if I do say so myself) and the painters were really well staying within the lines. No really, they were really great (Dad, Laura, Cheryl, and especially Marie, and Shannen). Now its just for the decals, the flooring, the furniture and the baby!

Sunday, October 18, 2009

Finally a Date! ... Kind of


So I have my next appointment at Mt Sinai - the one were I was supposed to get a date. Well I have one... actually I have 2! November 12 (Thurs) and November 16 (Mon). Because of the need for Nickolas' surgery they don't want to have my surgery on a Thursday or Friday so there will be equipment and staff and testing for Nickolas during the weekdays. But Monday the 16th was full, so they need to see if they can bump someone.
Personally the earlier the better for me, (screw getting school done), he'll be out sooner, we'll get him home sooner, he'll be that much older at Christmas. Of course I also want full staff at Sick Kids so they can do all the testing - usually a head ultrasound and MRI before the back surgery. I think if he's born on a Friday, they will just do the surgery and do the testing afterwards. AND there is always the possibility of no beds and needing to wait anyways (hopefully not, but they did mention it just in case) and I of all people know sometimes NICU beds get full fast.

We also asked about latex-free setup and they'll do the c-section latex free. We got a bit of a rundown of where Nickolas will be after he is born. While they can't guarentee how things will be, we can get a 'probably this will happen'. Pretty much we'll see him quickly then he will go to the Mt Sinai NICU to be assessed, they put a sterile dressing on his back, bloodwork, IV, antibiotics (Amp&Gent). Sick Kids will be notified. After he is stable and everything is checked out, we'll see him again for longer (how long? - probably not long enough). Then when the NICU bed is ready at Sick Kids he'll be transfered across the street. Kyle will go, meet everyone and they'll have a game plan there. I of course will still be stuck in bed recovering from the c-section.

The ultrasound was ok. He didn't cooperate very much and wasn't moving very much. His head is catching up - it has been smaller (not on the scale yet), now it is on the scale. Apparently typical for spinabifida baby's. Mild hydrocephalus, the ventricles (the part of the brain that fills with fluid that makes hydrocephalus) did grow a bit, from 8 mm and 9 mm, to 9 mm and 10.5mm and I think hydrocephalus is considered at 10mm. But again that is expected. Everything is growing ok. He's estimated to be 2444gm (at 34 1/2 weeks). That is just over 6 lbs. Katheryn was born (at 40 weeks) at 2600 gms. So its not my imagination, he is bigger!

I find he doesn't move as much as before, more rolling around and less kicking and punching - but he does love head butting my bladder. Oh Joy! And he loves rock music! The louder the better and he jumps around in there.

I think that's all the updating for now. Katheryn of course is still doing well and I'm enjoying not having to go into work. But I'm getting nervous about not alot of time left, and thinking it is dragging on forever!
Everyone knows how much I like to plan everything, and can't plan ANYTHING this time around, just a wait and see and take things as they go, and have faith that things will work out. There isn't anything I can do anyways.

Tuesday, October 13, 2009

Update


OK OK so I've been a bit lax updating this thing.

I'm officially on maternity leave (from work) - still slugging away on my MRP project for school. Katheryn really enjoyed visiting all of her family on Thanksgiving weekend and we're working on getting her learning more words. 18 months is such a milestone!

Nickolas news - I find out on Friday when our c-section will be.
I did have a visit at Mt Sinai in September and had another ultrasound, everything is still there (yes the other ultrasound place is garbage), but no hydro and everything is progressing well. Nickolas' head remains small, but that does not seem to be unusual.

This Friday I should have some more answers, have a date, meet with the pediatrician and know some kind of a game plan. I'll keep everyone posted (now that I know this blog is actually being read).

We are trying to get ready on the room - 34 weeks and no nursery yet - I'm getting a little nervous about that one. We have some clothes in the closet and the cradle - so really what else do we need right away. I have a bunch of one-peice outfits for 0-3 months, no waistbands because of the scar and no elastic bands because of the latex allergy. I need to look at more latex-free stuff. Spina bifida is associated with latex allergies and so it's assumed he will have a latex allergy and we need to look at labels!

Saturday, September 12, 2009

Things are Moving


So I'm finally seeing the high risk clinic at Mt Sinai on Monday and hopefully get some answers about what the plan is for the rest of the pregnancy.
I had an ultrasound done and it showed no hydocephalus (great!) but I don't really trust what the tech saw, considering it said he couldn't see an open spina bifida - which we KNOW is there! And the head is small, which freaks me out a bit, but we'll keep watching it. But no hydro - which is what we really wanted to find out. During the ultrasound we could see his mouth opening and closing - I think Nickolas and Katheryn have been 'talking' already! He didn't move that much during the ultrasound, but as soon as I was outside he was kicking up a storm - this kid moves around ALL the time! When ever I'm awake he is usually moving and letting me know he's there. Hopefully when he's out he'll sleep a bit.

It's hard not knowing, not knowing how bad things are, or how good. Not knowing and not seeing our little boy, just imaging the worst and hoping its not that bad. Kyle and I have different perspectives about the spina bifida and the ultrasounds. He hopes for the best, I plan for the worst. So we compliment each other nicely. I am just so afraid of getting my hopes up, that things won't be as bad as what I've read.

We are trying to get the baby room ready. Slowly but surely things are progressing, we are emptying out the room and we'll start painting in a month or so. Katheryn thinks its great that she can move around the computer room a bit more. She loves running around upstairs and runs everywhere now. We just walk over to daycare in the morning instead of putting her in her stroller.
Oh are we going to have our hands full soon!

Monday, August 31, 2009

Holding Pattern

28 weeks now. It seems to be going to quickly and so slowly at the same time. It seems like we are in a holding pattern right now. When we found out about the spina bifida everything moved so fast, but now nothing.
I've kept going to Dr Samra, but I know that I'll starting going to a specialist at Mt Sinai soon, but I don't know when or who. We are kinda of stuck. We go for another ultrasound this week to look/check for hydrocephalus ("water on the brain") which is the next big thing we need to worry about. In July it hadn't developed yet, but can develop very quickly at any time (or not at all). It would effect when we expect to deliver. I don't know if we should have done ultrasounds yet, but if it was there and was large - we aren't going to deliver at 26 weeks, or 28 weeks either.

I am always amazed when people say how brave we are being. It doesn't seem like we are being brave. We aren't doing anything especially courageous, we are dealing with what life has sent us. We are fighting for and loving our child.

So I don't actually have much more news. Nickolas moves around ALL the TIME! (I'm not complaining) and everywhere. He is probably breech, or flipping back and forth, up and down.

We are going to start on the nursery soon. I have plans and paint chips, but of course it is still filled with our computer room crap. But we have time (hopefully), 28 weeks is a big milestone to meet, next is 32 weeks, but of course I still 39 weeks in my head. And that is what my timeline for my research project states (yes I'm trying to finish my Masters before the baby comes - I know I'm crazy).

Katheryn has become our next artist. Drawing all over paper, magnets, floors, herself, her parents - not the walls (yet). And Kyle is just waiting for her to hit 20 lbs so she can go in her new car -big girl - seat.
She is such a monkey!

Friday, August 14, 2009

Welcome to Holland

I wanted to share this posting that I found really helped (and yes it made me cry).

Welcome to Holland
By Emily Perl Kingsley, 1987
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland. "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills – and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy ... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you many never be free to enjoy the very special, the very lovely things about Holland.

Wednesday, August 12, 2009

My first blog... ever!
I decided to start this blog to keep everyone up to date on what is going on with our expanding family. I've also found it helpful to read about other blogs of people who are experiencing the same thing we are.

Yes the spina bifida family blog.

Kyle, and I (and Katheryn) are expecting a son (and brother) in November. We found out about 3 weeks ago that our Nickolas will be born with spina bifida, a myelominengecele, the bad one. The worst day of my life, our baby boy has a congenital, non-treatable, disabilitating problem. We were told (at 21 weeks) that in Ontario we have until 24 weeks to terminate. What?! This is the baby that I can feel moving all the time! What are we looking at here.

A little bit about spina bifida first - when the baby is forming, the spine did not close all the way, this means that there is a space in the spine in which the spinal cord comes out (the lesion) and forms a pocket in the back. The nerves are damaged from this point and below, the lower the lesion the better the outcome.
Nickolas' lesion is in the lower lumbar/upper sacrum area - its not the worst, its not the best area to have a problem. Hopefully we are looking at needing braces/crutches to walk. But we won't know for sure until he is born.
We talked with a neonatal neurosurgeon at Sick Kids, a pediatric rehab doctor at Bloorview who runs the spina bifida clinic. We had an MRI, a level II ultrasound and an amniocentesis. Pretty much all the tests/visits we were offered. I'm posting the picture of the MRI and you can see where the lesion is - the white part by the bum (its supposed to be all black).

Otherwise we are hoping for a happy normal baby who will be born with a physical disability. And yes there will be other difficulties and health problems, but this is our SON. We wouldn't ask for this, but he is here, he is ours, and we can work through this.

I think this is it for now. I'll keep you posted as things are developing