Wednesday, August 7, 2013

One Year Ago

One year ago, today, I took a risk.
One year ago, today, changed Evan's life before he was even born.
One year ago, today, Evan and I both had our very first surgeries.
One year ago, today, my water broke.
One year ago, today, Isaiah and I realized we'd have a very difficult next few months.
One year ago, today, was our fetal surgery.

This morning Evan woke up at 5:30, as he's starting to do now. He drank 6 ounces and then played in his bouncer. He loves grabbing the toy remote and his frog rattle from the hanging links and bringing them to his mouth. Sometimes his mouth accidentally turns on the music for the remote which surprises him. He rocks himself on the bouncer.
I took him out and put him in his high chair with his green car and the rock 'n stack toy so I could eat some breakfast. If I put all the stacking rings around the outside of the high chair tray then they prevent the car from rolling out of his reach. He loves his green car. Sometimes it drops on the ground and he'll look to find it. Sometimes it drops on his lap and he can't see it so he grabs the rings instead.
After a while Evan started getting restless so I prepared some more milk. He couldn't drink it because his nose is completely stuffed so I used his favorite (note the sarcasm) saline spray and bulb syringe to clear out some mucous. He screamed quite a bit but then was able to drink more. I noticed his neck was full of lint and dirt so it was time for a bath.
We've got a nice little bath routine down now. Undress in the room while the water gets warm. Wrap up in a towel and go into the bathroom. Sit Evan down in his infant bath seat since he can't (YET) sit up on his own. Wash legs, then belly, then arms, then neck, then hair. Splash water on his belly and enjoy hearing his laughing. He kicks the water and gets me wet. Rinse off. Wrap up in towel and go to the bedroom. Get dressed and snuggle.
He drank a few more ounces (after another enjoyable bulb syringe session) and went down for a nap. I work online while he sleeps. Then he'll wake up and we'll play again. He'll probably spend some time in his jumperoo where he loves to spin the salamander toy and jump and jump and jump.
Somewhere between 1 and 3 Isaiah will come home and take over so I can work a couple more hours. Sometimes we all nap in the afternoon.
We do this every day. Our lives are so normal.

One year ago, today, I would never have believed this.

Health Check-up: I don't think I ever mentioned how we've eliminated one of Evan's specialists. Our 9 month cardiology appointment went well. He hasn't had any episodes of SVT (as far as we can tell) since the NICU so we've officially been given the approval to take Evan off his heart medication. Most kids just grow out of SVT so we're hoping that was the case with Evan and we'll never have to worry about his heart again.

One specialist we do need to see is an ophthalmologist. It's pretty standard for a child with hydrocephalus to have an eye check-up before age 1 just to make sure the pressure in his head isn't messing with his eye sight. I think Evan is fine, but I also wouldn't mind seeing him in some baby glasses. They're probably obnoxious to worry about but I think they're SO cute! We had an appointment set up in Utah but we had to cancel it when we moved so we need to find a new pediatric ophthalmologist here.

We're also working on finding which spina bifida clinic we'll go to in California as well as which early intervention program we'll use. All of our doctors in Utah were chosen by a discharge nurse in the NICU and  I was happy with all of them. I'm just now realizing how nice that was. It's a little annoying to start over with doctors who don't know Evan, but I'm hoping for the best.


  1. I was celebrating his 10 month birthday and didn't even consider the day he had surgery. Looking back, I remember the news that the water had "broken." I thought it was a done deal that for our little one, it meant a 25 wk delivery-----not so, Grandma. We've had to learn a lot of new things over the past year, but not a one more powerful than the power of prayer. Heavenly Father picked the best parents for Evan.

  2. I stumbled upon your blog while searching for information about periventricular heterotopia. My 11 month old son Giovanni was just diagnosed and I am feeling very lost. If you wouldn't mind, I would love to connect with you. My email is and my blog is Thanks in advance!!