Thoughts on Facing Major Surgery in March

thoughts on facing major surgery- Making Nice in the Midwest

Needles? I can handle those. Between IVs, epidurals, and tattoos, I’m quite a big girl when it comes to facing discomfort. But knives? That’s a different matter. I’m no stranger to surgery, but in March I’ll be undergoing the scariest procedure of my life.

One morning last April, I swung my feet out from under the covers of my bed, but when I tried to plant them on the floor, I knew something wasn’t quite right. I couldn’t gain my balance, and I was afraid I might actually tumble to the ground. Hmmm. This isn’t normal, I thought. But I tried to go about my day as usual, hoping I would soon feel fine and that the world would stop spinning around me. But I didn’t get better, and that night I began a week-long stay at the hospital that ended with a discovery of a Paraganglioma, or a carotid body tumor, that was growing in the right side of my neck. At the time, I was just happy to discover this hidden problem, but due to my pregnancy, the doctors decided to wait to take action, and so I pushed my worries to the back of my mind and focused on the excitement of the new life growing inside of me.

Well, recently the time came to finally deal with my tumor, so I began making trips to Cleveland to meet with specialists, to get tests done, and to discuss my treatment options. After becoming educated about Paragangliomas and joining an online support group for people with this rare tumor, I decided against radiation in favor of a less risky treatment option- surgical removal. In the surgeon’s office, I felt very matter-of-fact about the whole prospect. I have a tumor that probably isn’t cancerous, and they’re simply going to take it out. That’s all. It will all be fine. But once I stepped out of the hospital, I began to slip into a bit of a depression.

The removal of Paragangliomas is certainly not without risk. My tumor is about the size and shape of an egg and is nestled behind a bundle of cranial nerves where it’s pushing apart my carotid arteries amongst blood vessels that are feeding it. The tumor might be growing into my carotid arteries, and there’s a chance that the carotid arteries may need repaired, removed, and maybe replaced during surgery. My surgeon comforted me that he had never had anyone die during this procedure, but there’s risk of stroke, cranial nerve damage, not to mention my lingering fear of death, as unlikely as that might be.

I spent many sleepless nights staring into the face of my sleeping baby girl, wondering what her life would be like with a mom who couldn’t talk or eat normally. Would I still be able to take care of her like I should? What if I had a stroke and couldn’t hold her any more? Or even worse, what if I died, and she grew up only knowing me through stories and pictures? I certainly hyped up the risks in my mind, and needed to snap out of it, because I was slipping into a depression, and I was having trouble focusing on work and enjoying my life.

Thanks to Facebook, I became involved with a support group where people just like me from all around the world shared their experiences and encouragement with me. I met people who had recovered from their surgery pretty well, and after a week, were even able to return to work as usual. I even met new moms who were able to continue nursing after their recovery. Some people shared their stories of dealing with the side effects of the surgery, and they seemed to be coping quite well. Some people were living with a permanent feeding tube, and some were living without their carotid arteries on one side, but they were living. I felt like I could deal with whatever would happen, and I could finally come out of the fog of self-pity and fear.

Health crises always make you think more about what you can do to take better care of yourself. At least, they should. We’ve been eating healthier in our home and considering consuming fresher, whole foods. I’ve been told time and again how much worse the outlook for my surgery would be if I were a smoker. Well, the thing is, I was a smoker. For about two years before I became pregnant. And if there was any doubt before, I know now that I definitely won’t be going back to that bad habit. The fun of smoking isn’t worth the crazy effects it has on every aspect of my health.

Facing major surgery has also forced me to look inward at my emotional and spiritual health. It’s caused me to want to live every day with more of an eternal mindset, and to trust in God’s plan for my life and for the life of my little family. Sometimes, though, I honestly don’t know if God has a plan for my life. I believe in a powerful God, and after looking at the intricacies of my body on the MRI results, I can’t deny the existence of a purposeful creator. I believe, too, in the Bible, but I’ve wrestled with how to apply its promises to my life in this modern age. But one thing I do know is that life is short, no matter how you look at it. Whether you’re having surgery, or just getting into your car on the way to work, no day is guaranteed. I believe that putting stock in whatever the world has to offer won’t give me much of a return when those things fade away. I thank God for putting encouraging people into my life who are helping me deal with my questions and who are helping me enjoy this time of stillness before the surgery.

So, now I wait. My surgery is scheduled for March 19th, and it’s happening locally at the number two hospital in the country for this type of procedure. The head of vascular surgery at The Cleveland Clinic will be in surgery with me! What a comfort! In the meantime, I’ve been working diligently and scheduling blog posts now so that I can rest and recuperate after going under the knife without worrying about what’s happening here on the ol’ blog. I’ll spend a few days in the hospital, and when I come home, Phil will be on Spring break from teaching, so he’ll be able to help Lucy and I get along while I heal and hopefully get back into the swing of normal life. There’s a chance I’ll need therapy for nerve damage, and there’s a pretty good chance I’ll have some trouble performing normal functions like talking, swallowing, moving my shoulder, dilating my eyes, and even smiling, as my nerves recover from the shock of surgery. But we’ll deal with that if it happens. In the meantime, I’m just trying not to worry too much and just enjoying each day with my little family!

Making Nice on Instagram

photo booth big fun cleveland ohio

You guys! I finally did it! No, I still haven’t given in to the modern must-have-a-smart-phone mentality (as of yet, that is!), BUT- I did get an iPod touch. Which meant as soon as I turned it on for the first time, I joined Instagram. Like, the very same minute I peeled the packaging from the case. And now, as I suspected would happen, I’m addicted! I have to actively restrain myself from sharing photos there all day long. (Babies are just too fun to photograph, you guys.) While you will see pictures of Lucy there, you’ll also see pictures of my daily life, dates with Phil, cocktail recipes, home shots, and any other fun things I want to share with you all. You can follow me at mandimakes, which, by the way, is also my new Twitter handle. See ya there!

instagram mandi johnsoninstagram mandi johnson

A Day in the Life with Lucy

working at home with a baby

Life with a baby is anything but predictable! Some mornings I open my eyes in the darkness before dawn and see a pair of big dark eyes staring back at me. And I know I’m in for a long day. Other times, the bright light of afternoon filters through my curtains and lets me know Lucy’s been a darling and we get to enjoy breakfast at lunchtime. (What?! Yeah, this happens.) But lately we’ve been starting our mornings around nine, and both of us begin the day feeling rested and happy to be with each other.

Phil and I co-sleep with Lucy, and I think that helps a lot when it comes to a quality night’s sleep these days. When she wakes up in the middle of the night, all I need to do is roll over to feed her, and we both just lay there in a twilight state and quickly go back to sleep. Next thing I know, it’s morning! We lay there and play in bed for a short while, then I get her dressed for the day, lay her in her crib while I get dressed, then put her into our Ergo baby carrier to make my breakfast smoothie followed by coffee and some light reading.

By this time, Lucy’s eager to lay on the ground and play happily with her toys while I flip open my computer and see what chaos is waiting for me in my e-mail inbox(es!). I check out my social media outlets, respond to e-mails, work on writing blog posts, and work on client projects for Freckled Nest. Sometimes Lucy watches me while I work on projects for the blog or while I start food prep for lunch or dinner. But usually that’s pushing it. She starts getting tired again around eleven, and by noon she’s all worked up and fighting naptime.

entertain a fussy baby

When Lucy starts grabbing at her face and grunting out pathetic little cries, I know it’s time for her nap. This doesn’t happen at the same time every day, and while sometimes she’s ready after three hours of having been awake, sometimes she naps earlier or later than that. We don’t schedule her sleeping, we just try to read her cues at this point and help her sleep when she needs it.

So how do I get this fussy baby to sleep? Before I was a mom, I had no idea such a thing could be so difficult. But I think I’ve figured out the science to putting Lucy to sleep. First she gets a dry diaper, some fresh food from Mama, and then she snuggles up in our Ergo while I sit on a fitness ball and bounce away and shush loudly to the bouncing rhythm. On bad days, we do this while Baby Einstein plays in front of her face. Apparently Baby Einstein is magic! Phil’s parents got us this box set for Christmas that Lucy just loves! So thankful.

Finally! Thank you Jesus. Lucy is asleep! I tiptoe out of her room where I have laid her in the crib, pray that my ankles don’t crack as I walk (the weirdest thing wakes up this baby!), and then do a little dance once I’ve disappeared down the hallway. Let the whirlwind of productivity begin!

Coffee and HIppie Hippie ShakeLittle Lucy Jo Johnson- Mandi's baby from Making Nice in the MidwestPat the Bunny baby bookLittle Lucy Jo Johnson- Mandi's baby from Making Nice in the Midwest

work at home mom

Before Lucy came into my life, I worked from home with about the same productivity as I do now. What?! How is that even possible? I’ll tell ya, these days if I have a spare second, I’m amazed at what I can accomplish. I’m way more efficient  and much more conscientious about redeeming the time. If I have a spare moment now, I’m not sure when the next one will come along. So I get something done. I still have the luxury of time-wasting activities like browsing Pinterest and (ahem) blog reading. But I get to do that fun stuff while holding Lucy while she nurses, while I’m pumping milk for storage, or while I’m bouncing the babe to sleep. (Now when you see pins from me popping up on Pinterest, you’ll know the chances are good that I have a baby on my breast! Ha!) It also helps that Phil and I share a car, so unless someone is assisting me, I’m stuck at home until Phil’s back from work. The lack of an extra car certainly helps remove potential distractions from work!

While Lucy naps, I eat lunch and then pull out my supplies and get to work on my to-do list, take pictures for blog posts, update Fine & Dandy, and sometimes do work for design or photography clients. I prioritize this time by first tackling the task that is stressing me out the most. Then I can take a breath and cheerfully work away at the rest of my to-do list. And about halfway through that list is when Lucy decides to wake up and demand my attention once again. It’s cool, I’m usually ready to be distracted!

Sometimes this baby is entertained in the most productive ways! She loves to sit in her Ergo carrier and watch me dust, vacuum, do dishes, or get dinner ready. Everything interests her, and she seems to think housework is simply the most fun ever! I’m hoping I can wield this for good in the future. Midday is a great time for me to straighten up the house a bit, because I usually make a big mess when I’m slicing, dicing, and working my magic in the kitchen preparing dinner. Plus, it’s really awesome when Phil gets home from work and the house is sparkling clean and he’s caught me mid-chore. Lots of points for me! But I’ll admit, sometimes it’s nice when he comes home when the house is a giant mess and Lucy is in the throws of a big fit. He knows my days aren’t easy, but his walking in the door to find chaos awaiting is a nice reminder for him every now and then. I kid, I kid. (Mostly.)

Phil’s a school teacher, so he gets to come home a bit earlier than most working dads. I’m so thankful for that, and that he still has a job for a couple more months! His school district is making big cuts after this school year (and his name is on the list), so who knows what sort of job Phil will have after this May, and who knows how this change will affect our schedule? But if there’s anything I’ve learned about having a baby in our life, it’s that flexibility is crucial to survival. Until she’s old enough for scheduling, we have to be able to adapt our plans to what Lucy has in mind, and you know what, this control-freak is okay with that! Little Lucy, you’re already teaching your mama more than you’ll ever know.

Lucy’s highchair here, her baby carrier in multiple colors here, nursery floating bookshelves here

blogging with a baby on my lapcrib wall artwork nurserysweet potato soupbaby diaper laundry

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