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Operation: “Zo Zo”

10/03/2010

I had someone tell me today that they would know what was going on in our lives if I’d blog. I suggested Facebook to them, and got an ugly look. So, here is the game plan for Operation: “Zo Zo” (Faith’s name for Zoe)…

This Wednesday night we will be going to Nashville to stay in a hotel and get some rest before the big day. That means that on Thursday, October 7th, Zoe will finally be in our arms! We’re supposed to be at Vanderbilt between 6:00 am and 7:00 am on Thursday to get things started, and then about 2 hours after that, we’ll have her here! Then she’ll go to the NICU, and 24 hours later, she’ll have her closure surgery on the spina bifida lesion. The surgery only takes about an hour, and they told us to expect that about 3 hours would pass from when they take her back for pre-op, til when she’s back in her NICU room, no extra cords attached. From that point on, it’s basically a waiting/monitoring/testing game until we make it home.

Now for some of the more personal details…

Hillary was/is a little nervous about the C-section, but I think she’s feeling a lot better about it. Immediately after Zoe is here, they’ll wrap her back to cover her lesion, so we will still be able to hold her, which is totally exciting for me. When we had Faith, Hillary got to hold her first, and hogged all the time with her. Now, it’s Daddy’s turn! I’ll get to hold her for quite a while in the O.R., and then carry her (1/3 of a mile to the Children’s Hospital, no joke!) to the NICU and show her off to all of our family and friends who will be waiting to catch a glimpse. The nurses there will clean her up, do some assessments, and then bring me back to debrief me on everything. Once Hillary gets some feeling in her legs again, she’ll be wheeled to the NICU to check things out. Once we get the “All Clear”, our family and friends will be able to take turns visiting Zoe as well.

As for what to expect for Zoe. We’ve gotten many questions as to what we’re expecting with her condition. This is not a “feel good” post. I’m going to try to be objective with what we know. We have VERY high hopes for Zoe, and plan on doing everything in our power to help her overcome as many obstacles as she can. We are simply going on the average expectation for similar cases. Feel free to skip that part if you want to. There’s totally no judgement here!

The next day is when Zoe will have surgery to close up the opening. We’ve been told that it won’t be very complicated, since most of her spinal nerves have remained within the spinal column. After that, Zoe won’t be able to lay on her back for some time, until it heals up enough.

During our stay, we’ll be looking at her head circumference, to see if she’ll need a shunt. It’s very common for babies with spina bifida to need one. Hydrocephalus will probably occur, especially after her closure surgery, since the cerebrospinal fluid has been “leaking” from the lesion, and now has nowhere to go. A shunt is a small valve that allows the excess fluid to drain into her abdomen to then be absorbed by the body. Most people with shunts have no visible signs on the shunt. It is something that she would have for the rest of her life, but most likely would have very few consequences.

Besides that, we are expecting to deal with bowel and bladder issues, like perhaps Zoe needing a catheter fairly often, something very common for children with her level of spina bifida. We hope that she’ll be able to learn to control her bladder some as she grows up. If not, she will learn to cath herself around the time she starts school. I had a few students who had to do the same thing when I was teaching, and very few people ever even knew. It becomes normal and routine for them.

As far as mobility goes, we’ve been given a fairly positive outlook for Zoe. The nerves at the location of her lesion are low enough to probably limit her functioning, but not much. Some children with this level lose feeling from their shins down, others may only lose from their ankles, or even less. She will likely be late on most of her major physical milestones, but with physical therapy, we hope that she meets them in her time.

Sorry if that was overwhelming. It has been that way for us very often. We still have mini-breakdowns, but they’re getting fewer and farther between. We feel good about what God is doing, and we’re glad He’s doing it.

Now for the Jesus-y stuff to go with it…  😉

We’ve been in a series called “StormWatch” with stuCo this past month. I’ve been amazing to talk openly and honestly about the pain that we all experience and what to do with it. A truth that we’ve discussed is the idea that without pain, God is hindered. Think about it. Joy cannot be appreciated without pain. If things were always perfect, we’d be numb to the beauty. We couldn’t appreciate the triumph. The pain is what causes us to look for the wonder. We only appreciate our vacation after we’ve worked hard. Dessert tastes sweeter when we make it ourselves. We love to show off the grade in a class that worked all semester on. We NEED the pain to appreciate the joy. Look at what Ecclesiastes says…

For everything there is a season,
a time for every activity under heaven.
A time to be born and a time to die.
A time to plant and a time to harvest.
A time to kill and a time to heal.
A time to tear down and a time to build up.
A time to cry and a time to laugh.
A time to grieve and a time to dance.
A time to scatter stones and a time to gather stones.
A time to embrace and a time to turn away.
A time to search and a time to quit searching.
A time to keep and a time to throw away.
A time to tear and a time to mend.
A time to be quiet and a time to speak.
A time to love and a time to hate.
A time for war and a time for peace.

What do people really get for all their hard work? I have seen the burden God has placed on us all. Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end.

We know that God is doing more in our story right now than He even could have if things had gone the way that we’d planned. I can say the same thing for so many situations in my life up to this point. He never seems to go with my plan, and for that, I am ultimately thankful.

What pain are you working through that God wants to use for His glory? What plan might He have that is “immeasurably more” than you would have asked for? I am excited to see how God continues to be active in our lives as our family goes through some changes. Thanks for being a part of it with us!

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From → blog, Family, Zoe

3 Comments
  1. Betty Grundy permalink

    John I am so glad to have you and your family as my friends God works in many ways and right now he is working through your family to teach us all. Thank you so much for putting this on your blog and I am so glad I read it. You are such an inspritation to me Your family is in my prayers always.Love you.

  2. Sue Muncy permalink

    John I just got thur reading your blog and boy I’ve never been more proud of you!!!! I wish I had the faith u have I would be feeling sorry for myself. I love what u wrote about Zoe and it is so true she is exactly what God wants for u. You really opened my eyes and heart Zoe is a very lucky little girl to have parents that love and trust in God fully with the plans he made for u.. John u can just look at your pics with Faith and see the love u have for her and the twinkle in your eyes of how proud u r of her. Well I just wanted to say God bless u and keep on writing and keep me informed ok.. I love reading your blogs.. You’ll always be that little sweet curly headed boy I Loved…

  3. Your story is all too familiar. My son Owen doesn’t have spina bifida but does have hydrocephalus and was in surgery w/o 24 hours of being born to get his shunt placed.

    Wishing you and your family the best!

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