Sunday, September 20, 2009

Baby Ben Joins the Family

Benjamin Charles completed our little family on September 16 at 2:17am after a relatively short 8-hour labour. It was tears all around when he was born and our repeated "is he healthy?" inquiries were met with a resounding YES from the doctors and nurses. They all knew about Joey and the fact that there was no way to predict if this baby would have the same disabilities and shared in our joy when it was obvious that Ben was 100% healthy. A few pictures of the moment...I remember not being able to see for a time because I was crying so much:

So I got my wish...a "typical" hospital birth, baby beside my bed, visitors, and a healthy baby. I didn't realize that the typical birth experience is served up with a healthy dose of adrenaline, accompanied by complete insomnia, exacerbated by an over-crowded birthing unit and maternity floor. Every planned induction and c-section for that day was sent home and rescheduled...except for us. Though I was scheduled to be induced at 7:30am it didn't happen until 6pm, but Dr. S was unwilling to postpone my induction to another day because of the cholestasis.

Joey came later that day to meet his new brother, however he has determined that if he doesn't look directly at Ben he must not exist. We did manage to get one shot of actual eye contact:

And how cool is this? 2 similar photos taken of Joey and Ben at almost the exact same age. The resemblance is crazy!



36 hours after birth we headed home. I was pretty much delirious with exhaustion, not having slept for even an hour in over 2 days. The first few nights were rough, but it must be said that it had nothing to do with Ben. He is a SUPER easy baby, so much like his big brother in his contentedness and lack of crying, just minus the severe disabilities. I had really psyched myself up for a colicky baby after how easy I had it with Joey, but so far he is fantastic.

Ben developed a bit of jaundice after he had been home for 2 days, so we had to return to the hospital on Saturday where they discovered that his bilirubin was up considerably to 242. They sent us home but we had to go back the next day to re-test, at which point it had risen to 252. On Monday we saw our family nurse practitioner, who re-ordered the test, and on Tuesday it was finally coming down and was at 219. His colour is much better, he is eating like a champ (what a treat after dealing with severe feeding issues for 3.5 years!) and he has gained enough weight to be back up to his birth weight of 7 lbs 13oz so there are no plans to re-test.

For the first few days Jason was home with us, and when he returned to work my Mom came and stayed for a week. She just left today so starting Monday I am o my own with my two boys. I am scared and excited all at once. It will be nice to develop my own routines but not having any help on a daily basis will be a big adjustment. Jason is pretty good at sharing nighttime duties which in turn allows me some sleep, and when I am rested I can do anything. When I'm not, well....lets just say you wouldn't want to be around me.

On Thursday I returned to our nurse practitioners office just to have Ben's weight checked and was met by our nurse and family physician who were eager to meet him. Our nurse, who has been so supportive of me, always asking how I'M doing first rather than how Joey is, asking after Jason and how we are coping, asked me a very frank yet interesting question...did Ben's birth make me sad about Joey? I thought about it for a second and realized that the exact opposite is true. Ben's birth has somehow "vindicated" the difficulties and challenges we've experienced with Joey, and having a child now that will likely develop typically makes me feel like I get the best of both worlds. I have said it so many times before, we are SO LUCKY to have Joey in our lives, the things he has taught us, the people he has led us to meet, the patience he has inspired and the satisfaction he has with himself are all amazing things that most other families will never get to experience. I'm sure a lot of people look at us with some form of pity, or fear that having a disabled child could happen to them, but in a way I feel sorry for THEM, they will never know what having a kid like Joey brings to your life, but I get to experience that AND having a typically developing child. So anything I feel like I was robbed of before has been returned to me through Ben, and I'm sure he will have all kinds of stuff to teach us too.

- P, J & J

Friday, September 11, 2009

A story about two little boys and a tractor....

So we had a tractor for Joey to ride on all summer, graciously loaned to us by Joey's previous nursery school. It was a little beat up, the back wheels were at a bit of an angle and a few of the screws were missing, but Joey loved it and it was excellent practice at balancing. We used it all summer with the knowledge that we'd have to return it.

Since we got it I had been looking for one of our own, new or used, to replace it when it inevitably had to be returned. It had come to our last buy it direct from Little Tikes in the US for $50 USD, plus about $40 shipping, plus exchange, plus duty and customs charges. A little rich for this family with one of us about to take a huge cut in pay to go on maternity leave for a year! So I happened to mention that I was looking for a used one on a message board I frequent, which was met by a response from a lovely lady named Devin in upstate New York. You see, Devin has a son named Brenden who is 3 years old as well and has autism, so she understood how incredibly difficult it is to find that special toy that just "works" for a special needs kid. So, right away she asked Brenden if he would be willing to give his toy to another little boy who needed it. Brenden is non-verbal but understood and shook his head "yes". 3 days later the UPS man arrived with a big box containing Joey's new tractor, along with a note from Brenden and a picture of him riding the tractor!

So of course we put Joey on the tractor right away, took a picture (the one below) and sent it off with a thank you card to Brenden from Joey, explaining to him that Joey's muscles don't work the same as other kids and that this was one of the toys that he is really able to use, and thanking Brenden for doing such a kind and generous thing.

The really nice thing is that this tractor is in much better shape, since it hasn't been used by a school of children, and much more stable for Joey to ride on. I' m pretty sure the expression on Joey's face says it all! Thank you Devin and Brenden, many tears were shed in this house the day that tractor arrived over the kindness of strangers!

In other Joey news, he received a new loaner walker last Friday. This one has much less support that the "Pony" he was using before. We still use the Pony purely for exercise and for Joey to experience the freedom to move around outside as he wishes, but it certainly wasn't aiding in getting him to walk independently anymore, he had surpassed its usefulness. So along comes the "Spider", as Jason calls it. It definitely provides less support and causes Joey to work harder, and has all kinds of adjustments that can be made as he gets stronger in it. Surprisingly he took to it right away, unlike the Pony which took him months to make a move he started moving a bit right away:

So that's pretty exciting for us, and he will start bring it to preschool as well so he is upright with his peers.

Today is our last day as a family of three. I had all kinds of mommy-son stuff I wanted to do with Joey on our last day alone together, but it just wasn't in the cards. Joey picked up a bug after only 2 days of preschool and last night I started feeling under the weather too, so today we moped around being sick together. After dinner he is off to Gramma's since Jason and I are headed to the hospital at 7am tomorrow morning for my scheduled induction. Our next post should include pictures of Joey and his new baby brother!

- P, J & J

Friday, September 4, 2009

Induction is Booked, Anxiety Sets In

It's so strange to know the date your baby will be born. Some people feel that way about knowing the sex of the baby before it's born, which is something I just HAD to know, but I feel like knowing the arrival date spoils to surprise even more than knowing the sex.

But, I know that due to the cholestasis it's best to induce between 37-38 weeks, and I will be 38 weeks 1 day on September 15th, which will be this baby's birthday. Of course it's entirely possible he will decide to come on his own before then but so far he has seemed pretty comfortable where he is. So only a week and a half more of being a family of 3, soon our lives will be forever changed by the arrival of our 4th family member....does that make me sound anxious at all?! No, I know that there is no better gift I can give to Joey than the gift of a sibling, and I know this new little boy will be forever blessed to grow up with a brother like Joey. So I am excited, maybe just a bit anxious, but I am so busy over the next week that I won't have much time to think.

I also got the results of the biophysical profile ultrasound I had done over a week ago. It measures things like heart rate, amniotic fluid level, basic anatomical measurements, approximate weight of the fetus, fetal movements, fetal breathing and the reason we had the test done in the first place...muscle tone. The results are fantastic...8.8 out of 10! Anything over 8 is considered normal. There was absolutely nothing remarkable about the scan and all signs point to a happy, healthy baby. His approximate weight at 35weeks 1day was 6 lbs. 2oz.

Next week is a big week...Joey begins his new preschool! I'm praying the transition goes well, Gramma Phyllis is going to accompany him for the first few weeks so hopefully that will help. Tuesday is the big day!

- P, J & J

Wednesday, September 2, 2009

Sippy Cup Success!

For the first time in 3 years, 5 months and 2 days Joey held a bottle and brought it to his mouth! This has been the bain of our existence, having a child who relies on others 100% to feed him both solids and bottle, so this is HUGE progress!!! He didn't actually drink from it, but he picks it up, plays with it and brings it to his mouth repeatedly. I think he just needs to figure out that he needs to tip his head back to get anything from it. Of course I managed to capture it on video this morning:

About 2 weeks ago I purchased the bottles you see in the video, as they were the only ones that took he nipples from Joey's other bottles and had optional sippy cup handles. This was a big deal for us as Joey has been using the same bottles since he was released from the hospital at 26 days old. For the past 3 weeks I have been feeding him from the new bottles just to get him used to the shape and size but with no pressure for him to hold it himself. On Monday I decided to put it in his crib with him for naps and bedtime with just a little bit of water. This morning I removed it and it looked like there were bite marks on the nipple but I couldn't be sure. So this morning I refilled it and put it on the floor, where he proceeded to put it in his mouth!

What a lovely start to the day :)

- P, J & J