Ryan's First Christmas

For this holiday season, we did alot of visiting. It's a good thing that Ryan is a good traveler. As soon as we start to drive, he falls asleep in the car seat. On Christmas Eve Eve, we made a trip into Hamilton so I could exchange presents with my friends and God-daughter. We had a mini-Christmas party, and had food and drinks and played some board games.

Then on Christmas Eve, we went to my mother's in Toronto, and had a turkey dinner with her and my brother. It was a nice evening, although since my brother had to work the night shift that night it was a relatively early evening. We opened presents and took some pictures. Ryan smiled for my mom, and she was really happy.

Before we left we gave Bill's Aunt Donna a call, in Mississauga, and decided to drop by. Since it was Christmas eve there wasn't anyone there, they have their big celebration on Christmas Day, but we were able to see Donna, and she was able to visit with her great nephew. We got some pictures done there as well.

Christmas Day was a much bigger trip. We left Cambridge in the morning, around 9:00 and drove to Ottawa to visit Bill's family. His mother and Bernie were there as well as 3 of his brothers, and their wives and kids. Bernie's step children and their children were also there. It was a big crowd and they had 23 people to Christmas dinner. We got there just in time, about an hour before dinner, which gave me time to express breast milk before dinner, and still mingle before we sat down. It was a delicious meal, and I treated myself to a glass of wine. After dinner we played a few games, and opened presents.

We drove home the next night after having a leftover dinner with Bev, Bernie, Gord, Lisa, Dylan and Jessica. We had been contemplating a drive to Montreal or Quebec City, but decided the money would be better spent on finishing renovating the bathroom.

Negative results

So we got a phone call with negative results for the CPT1 Disorder. It was a big relief. Unfortunately it was a qualified answer. We have to wait for our official negative results from Dr. Potter, the doctor in charge of the Genetic testing. He needs to interpret the results.

So we still need to treat him as if he has the disorder, for now. But it's still a load off my shoulders. I'm already a worry wart, this doesn't help much. I cried every day since Ryan was born, whether from hormones, frustration or worry, I'm not sure. Then I found out that he might have something really wrong with him. I haven't cried since. Funny how that works, isn't it?

No sleep

I haven't posted much, but those of you that are parents will understand. The first few weeks as a new parent are frustrating as hell, especially when you're trying to breastfeed. Ryan wants to be fed every 3 hours around the clock Once in a while he'll go as long as 4 hours, but that's about it. I sleep all day and all night, whenever he sleeps I try to sleep. It doesn't leave any time to get things around the house done. It's a good day when I can get us both up, dressed, fed, and I'm able to have a shower.

His smiles make everything worth while. My little starfish. They're so cute when they're sleeping.

CPT1

So I got a call from a doctor at the McMaster University Hospital. Ryan had received a positive test result from the Ontario newborn screening. The blood test that they take from the newborn's heel, in the hospital. He had screened in the positive for a Genetic condition called CPT1. Carnitine Palmitoyl Transferase 1 Deficiency. Immediately after finding out I of course googled it. I found this website.

It is one type of fatty acid oxidation disorder. People with CPT-1A deficiency have problems breaking down fat into energy for the body.

Energy from fat keeps us going whenever our bodies run low of their main source of energy, a type of sugar called glucose. Our bodies rely on fat when we don't eat for a stretch of time - like when we miss a meal or when we sleep.

When the CPT-1A normal enzyme is missing or not working well, the body cannot use fat for energy, and must rely solely on glucose. Although glucose is a good source of energy, there is a limited amount available. Once the glucose has been used up, the body tries to use fat without success. This leads to low blood sugar, called hypoglycemia, and to the build up of harmful substances in the blood

Basically if Ryan has this disorder and gets sick, or is unable to get his nutritional needs met in some way (nausea, diarrhea, etc...) he risks having a metabolic crisis, which if serious could cause a coma or brain damage.

So I brought him to McMaster, to get bloodwork and urine samples, for the testing. We should know in the next week or so. Until then I was told to treat him as if he has the disorder. We were given a Jump to the front of the line letter. It states that if Ryan is sick we need to take him to emergency and skip triage, in order to be treated, and started on a glucose IV immediately. If the tests are inconclusive we will follow up with a skin test.

Waiting Sucks.

Ryan arrived

The email announcement I sent out on December 7th
************************************

Our little bundle of joy, Ryan Frederick Downes, was born on
Tuesday, November 28, 2006, by Cesarean, at 12:58 am. He was 12 days late, and refused to come out on his own. He refused to budge even after 2 separate attempts to induce labour. So we went to a cesarean. Previously, on Nov. 23rd we had tried an induction that failed. We went back to the hospital on Sunday Nov 26th to try and induce the labour, and stayed for 3 hours, then went back on Monday morning at 8:00 am to start another induction. This time I dilated 2 cm, so they broke my water at 2:00 pm and I dilated another 2 cm, and progress stopped. I was scheduled in for a cesarean at 9:30 pm, but ended up being bumped by other more urgent cases. I went into the OR just after midnight, and Ryan was finally born.

We had to pull him kicking and screaming into the world, but now the little bugger's here.When he finally made his appearance, he weighed in at 9 lbs, 11 ounces. I'm still recovering from the experience. :) We stayed in the hospital until Friday Dec 1st and finally we were able to go home.

I've attached a couple of pictures of Ryan. In the first one he is
a few hours old, in the second, a little over a week old. He's already wearing 3-6 month sizes in sleepers, and he's not even 2 weeks old yet. He's bigger even than his weight might have you believe.