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.