Home Sweet Home

So I know everyone has been waiting for a in depth update of our lives, and like usual we apologize that it's taken this long. Things seem to go so fast, and yet little gets done. He's an overview of the last few weeks.

We were moved from the NICU to a close observation room on Tuesday July 24th. This was an extremely trying time for me as mom. Having your own one-on-one nursing for the first week of your child's life is a hard thing to let go. It was as if they had just abandoned me and our baby. Not that they had, but the emotions surrounding this transition was so challenging. Jake was still have periodic apneic spells but they seemed to be improving.

After a few days on the floor with continuous monitoring the pediatrician doing rounds informed me that he felt it was time to "wean" mom off the monitors. I didn't realize how dependent I had become on the continuous feed of oxygen saturation and heart rates. It was as if I wasn't watching my child for signs of life but just the monitor. Any parent that has spent time in an ICU must feel this way. I have a new appreciation for the "difficult" parents that I've encountered on the pediatric unit, now understanding that loss of control.

We were discharged on Friday July 27th.

My oh my. What a challenging step in the whole situation. See we never were given a reason to the apnea spells. Just that they would get better (he'd out grow them) or they would get much worse. We spoke with specialists and they all concluded that there wasn't much to do at this time. The neurologist was convinced that they were not related to the increase pressure on the brain, and didn't want to make the life long decision of shunting based on the clinical picture.

I called my mom overwhelmed (as all first time parents do) with the responsibility of taking care of this baby. Cried my eyes out in the bath and fell into bed exhausted after two weeks of sleeping at the hospital.

We survived that first night on our own.

It's been so nice to be home. My mom can up this week and helped me normalize my child's behaviour and unpack our house. It was so good for me.

One piece of advice I'd give parents who's child has a "diagnosis" of any type is try to separate the disease or condition from the child. This has been a daily struggle for me. Every funny facial grimace or cry I want to run to the doctor and ask if it's related to his spina bifida. But beyond all that is a child, with a big personality that will take time from us to get to know. My pediatrician gave me a great bit of advice. "Throw out all those books, you will know, instinctively know as mom if something is wrong. Momma knows, listen to your maternal instinct." I'm working on it and it's been fun getting to know Jake.

Thank you for all the prayers, they have been felt. God has been so good to us we have many blessings to be thankful for. Jake will walk, having almost all the movement of his legs and feet. He doesn't have a shunt as of today, but the final decision will take up to 6 months. We were only in Edmonton for a week waiting, where it could have been a month. The hospitalization was short, only a few weeks and Kev was able to be with us the whole time. And best of all Jake hasn't had any apneic spells since we've been home. These and so much more. Praise God.