Sunday, April 12, 2009

The boys

Well. Now that you know lots about me, it's time to tell you about my boys.

My sweet, sweet boys are now almost 19 months old. Daniel and Benjamin were born on September 19th, 2007 at just 30 weeks and 2 days gestation. I had no complications with my pregnancy until 29 weeks when I started feeling some tightness and told my ob-gyn. Anyways, it turns out I was starting to dialate. A week later, I was dialated even more (even though I was not contracting). Both boys were breech and apparently they could feel Daniel's feet. They were very worried about cord compression and it was decided that an emergency c-section was in order.

So, within the hour, they had arrived. I was terrified. They were too young...just 30 weeks. They weighed 3 lbs 4 oz and 3 lbs 7 oz. They were of course taken right to the NICU after just a few pics with me.

They stayed in the NICU for 8 weeks and 1 day and came home together on November 15th, 2007. They both had rough hospital stays, but Ben definitely had the harder time. 24 hours after birth he was put on a ventilator. He was on it for 4 days. He spent the next 4 weeks going between CPAP and nasal canula. He got an infection. He required many blood transfusions. But finally, he got stronger and did better and got to come home.

Daniel fared better but still had a long haul. Although he never had anything really serious happen, he just took a long time to get over his A's & B's and take all his feeds on his own. Maybe he was just waiting for his brother to be ready to go home too.

When they came home healthy, I really thought we were in the clear. The only worry I had related to their "preemieness" was RSV. They only left the house to go to the pediatrician. We were living in NY then and didn't have any family or friends nearby. This turned out to be a blessing since no one came to visit and therefore didn't bring their germs with them. The boys didn't get sick the whole winter.

By March, I knew that Ben was developmentally delayed. But there was nothing I could do about it yet. We were moving home in May and I already knew that it took upwards of 6 weeks to get a PT to start seeing him.

Ben finally saw a PT in July. She came to the house and agreed that he was very delayed. At that point he was 9 months old (7 months corrected). Her assessment put him at about a 3 month level developmentally. Unfortunately she was going on holiday for 6 weeks and was only able to give us some tips on what to do. In August, Ben finally got in to see the PT at our local hospital on a weekly basis.

At this point, I still didn't have any idea that Ben had CP. Well, I should say my head had no idea. My gut knew something was up. All last summer, I was a wreck. I would say that I was depressed. I was overwhelmed. All I wanted to do was sleep.

The week after their 1st birthday, we went to a children's hospital a few hours away for the boys to have EEG's. Daniel had had a "shaky episode" and their pediatrician wanted both boys to have EEG's to rule out epilepsy. After their EEG's, we met with the neurologist. He told us that Daniel was fine and was likely having "shudder attacks". These are common in young children and usually go away within the first 2 years. Then he talked to us about Ben. He told us that Ben has spastic diplegia cerebral palsy. He told us that he didn't know if Ben would walk, run or play sports. He told us that Ben was obviously very intelligent and that the CP didn't affect his cognitive abilities. He told us that Ben was lucky to have a twin brother and that Daniel was lucky to have Ben. We just sat there. I don't think we asked even one question.

Then we drove home. We hardly talked on the way home. I'm pretty sure I cried. The whole drive home I was just itching to get on my laptop and start googling.

It's now 6 months since "diagnosis day". Ben is making great progress. He can sit up quite well, army-crawls everywhere, and can pull up to kneel (he's close to pulling up to stand). His fine motor skills are great and his OT now sees him just once a month. Just last week, he started training for his first walker. He did absolutely amazing and walked everywhere he could. His PT was thrilled with how well he did.

I am doing OK. Most days are good. Some days are hard. Some moments are really hard. Luckily, I have Daniel too so I have to face Ben's delays everyday and I can't be naive about how delayed he is. This makes it much easier to go to playdates and see other kids doing "normal" things. But sometimes, no matter how prepared I think I am, it catches me. I see Ben laying on the floor playing (because he can't get into sitting on his own) and all the other kids walking and running around him and it just gets to me.

But Ben is so much more than his diagnosis. He loves to be chased and tickled. He's a picky eater (he likes red pepper but not apples?). He has the most gorgeous eyes and the most wonderful smile in the whole world. He loves his daddy more than anything (even more than mommy). He loves Tupperware. He doesn't really like it when Daniel kisses him. But he loves to kiss Elmo. He is so determined and so hard working that it amazes me everyday.

And Daniel. He's small but a bully. He loves to take Ben's toys. But loves to kiss him too. He prefers mommy to daddy but would probably rather just have his blankie. His favourite word is "cracker". He loves to look out the window at the cars. He'll eat just about anything as long as you're eating it too. He has the bluest eyes.

So that's it. Those are my kids. I hope you enjoyed getting to know them.


  1. Hey, thanks for sharing about your boys. I look forward to following your blog! I'm glad to hear how well Ben is doing and that you're hanging in there!

  2. great to hear more about your boys. :) yes, in my video i posted yesterday, they are "talking" to each other, which is pretty cute. do your boys "talk"? and i know i have to lower that mattress...happy to have to finally do it! :)

  3. Hi there... just found you through Kelly. I have 18 mo. old fraternal twin boys and one has been diagnosed with "mild" hypotonic CP. Your story sounds kind of similar as far as the EI and diagnosis goes... only difference is that our boys were born almost full-term with no NICU time.

    If you'd like to read my private blog, email me at hopefulmotherblog at gmail dot com and I'll send you an invite!

  4. I *hate* it when Jaden takes Malachi's toys... and it's only going to get worse. But sometimes, when Jaden isn't really paying attention, Malachi will snag his toy and I smile.