Yesterday, March 19th is an important date in our family. It marks the sixth anniversary of bringing Toby home from the hospital - a very different little boy than what we had expected Spina Bifida to look like for us. He came home with "extras": a trach, ventilator dependent, G/J feeding tube, nursing care. Here is a picture history.
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| I treasure this photo - because he didn't have a trach yet. |
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| His first bath; that is a size 1 diaper - He swam in it! |
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| Conor holding Toby for the first time. Conor also needed eye surgery just a few months later. |
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| I love those big blue eyes! |
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| Very sick, holding on by a breath (see his respiration rate). |
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| Just got a trach |
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| Beginning to grow and feel better - on a ventilator full time. |
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| Boy, he loved his pacifier! |
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| Home sweet home! |
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| First day home. |
Just recently, I have had some spare time to work on Toby's first-year scrapbook. I am six years behind, but oh well! Last week, I found a notebook that I had kept while pregnant with Toby and afterwards. It was amazing to see the questions I had for the doctors while we were expecting this little baby with so many unknowns. I still have copies of all the encouraging e-mails and verses people sent to us when we first learned our unborn baby would have Spina Bifida. He's been "Redefining Spina Bifida" ever since - paving his own path, doing his own thing. I have heard countless times "it's just a Toby thing" when something has happened we can't explain. That notebook also has a list of all the amazing people that gave gifts, money, and time during that long 64-day stay (the 2nd time around). That notebook also has a list of practical things we would need for our house to bring Toby home with his ventilator, trach, etc. My dear friend Erika helped me with all of that. Tears streamed down my face as I read all of the journal entries on caringbridge of support we've had through family, friends, and our church. Complete strangers that sat with Toby in the hospital who now live just a few miles away and both of our sons went to preschool together. I see God's amazing protective hand through it all - strengthening, changing us, growing our faith.
This week of March also marks one year post ETV surgery (March 17th) and the horrible convulsive seizure Toby lived through (March 24th). I still can't look at these photos without shedding many tears. Again, Toby's redefining Spina Bifida!
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| Waiting for surgery - Endoscopic Third Ventriculostomy |
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| After ETV - in recovery |
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| Anxiously awaiting him to wake up after seizure. |
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| He's awake! |
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| In Rehab - doing therapy, he was so floppy! |
It's pretty amazing - this week in March marks many anniversaries of this journey - sometimes wrought with fear and sadness, other times joy. Through it all God has been so faithful - I'm so thankful for His grace and mercy - that He answers our prayers. It's not always in ways we would want or expect, but always for our good.
Psalm 40:1-3 "I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear the Lord and put their trust in him."
