Guest Post: When lllness Interferes with Motherhood

renee 1 Being mama to two active boys has gone a bit differently than I planned.

This article is the sixth in a series of guest posts. I have invited a few select friends and family members to contribute to my blog. I have chosen them based on two things: 1) I personally go to them for help; and 2) I am fascinated by their unique parenting challenges, because I want to hear how they make “okayest” work for them.

Allow me to introduce you to my childhood friend, Renee. We were close friends in elementary school, but we probably haven’t even seen each other since middle school. (I think we were both pretty dorky. The other girls were fawning over New Kids on the Block while we were making up blues songs about our troubles at age ten.) Like lots of old friends, we re-met on facebook. Even though we haven’t been able to reconnect in person, we bonded over being on bedrest – and death’s door – together. 

Renee’s optimism is astrounding. She deserves a chance to tell her story. Here’s Renee:

The Hubster and I were married for three years when sweet boy #1 came along and we had it all figured out! I got to stay home for a while with him and the three of us had lots of fun together. Weekends were relaxing, mornings were slow, but time flew by. Other than him having pediatric epilepsy controlled by meds, nothing could stop us.

Five years, one miscarriage and many fertility issues later, sweet boy #2 greeted us! After he was delivered, the doctors delivered a 10 pound ovarian cyst that had shared space with our new bundle. We knew it was growing along with him as it was discovered right before we learned I was pregnant! Many ultrasounds took place to make sure he was outgrowing the cyst that posed a threat to us. Removal during pregnancy was too risky so we prayed and took precautions. I had ten weeks of bedrest and my ankles were the size of my knees. Yikes! But that was the least of my worries. As soon as Youngest was born, I started having severe abdominal pain. Even in the hospital, hours following the c-section, I was complaining of increasing pain and the docs said, “That’s to be expected”, or “You just had a c-section”. At the one-week mark, I had my staples removed and I was feeling a bit better.

But two days later, I woke-up with a 104.5 fever and couldn’t move my legs. My husband was home, doing what we thought was a great idea for his “time off”: putting in wood floors. Huh? Hey, don’t plan remodeling projects for maternity leave. Even though it’s your second kid and you think you are a pro. Nope. Don’t. Anyway, we were so afraid of what could be wrong so we called 911. Not kidding: paramedic dudes had to climb over plywood, wood slats, tons of tools and a bunch of new baby garb from just not getting it all put away yet. Hubster had to stay home with the kids, so this was my first ambulance ride, alone. At the ER I was told I had a “wicked” UTI. Also, it was determined I had bilateral sciatica and it “could be six months”. My left calf was also swelling and turning black. I was given antibiotics and steroids. My husband drug our babies out to pick me up. I remember sitting on the bench waiting, thinking, “I can’t walk. I can’t stand. I can’t lay. How am I going to be a mommy of two?” Once home, I literally screamed the whole way in the house. I had to have a walker at all times. Along with that, I needed posture help from my husband. Ok, I went to bed the night before feeling just fine, right? The next three weeks were what I’d describe as heart-breaking. I went to the ER seven times with excessive bleeding, fainting, unexplained pain, etc. They just kept saying, “It’s that wicked UTI.” I went to my family doctor and explained everything. He said, “Renee, what is it you’re doing here? Are you drug-seeking?” Hmmmmm. He was no help.

I decided, “I’m 30. I’m a mom. I’m going to tough this out. Oh, and I will use a walker.” I was in so much pain. I couldn’t walk, lay or stand. No cooking, no cleaning, no running to the baby’s crib when he awoke for a feeding. My husband rigged some pillows in our bed to surround me and the baby, propping me up just right for breastfeeding and remaining pain-free. My oldest climbed in next to me and we colored every page of every coloring book, and found every hidden picture ever drawn. He was a trooper. Everyday when he was home from school he’d bring me something he made to “make mommy well”. It was nearing the end of May (three weeks since birth) and it was time for my oldest’s kindergarten graduation. My leg was still massive and black and blue. I was grey all over and I still couldn’t walk. My husband finished that floor and put a comforter under my recliner. (At that point, I’d slept in the recliner since mid-bed-rest days, with the exception of birth week. Twenty pounds on my abdomen was too much for lying down, and not being able to move your legs makes it hard to get in bed.) He pulled me across our new floor (wee!) to the bathroom. He carried me to use it and back to the chair. He was dressing me completely, cooking all meals, changing all diapers, up all night with Youngest and taking Oldest to and from school and the sitter’s. My sitter was amazing. One of my best friends.

This graduation was a big deal to me. But I didn’t think I could make it. However, walker and all, I arrived. The ceremony felt like hours. I cried tears of joy for his accomplishment and tears of sadness for our situation. Life was upside down.

My husband’s leave ended and that weekend we were faced with “Who will care for Renee? Who will care for the boys? Should this be the same person?” We thought I’d be better by now. My sitter would come over and literally babysit me, 30-year old me. I had so much pain. We’d cry and pray together. I even confessed that I felt death was near.

My husband suddenly had a brilliant idea! He was approved to use his vacation time to drive us out to my mom’s house in Missouri so she could take care of me before school started back. That way, he could go back to work and not lose his job. Also, we figured I’d be better by then.

Off we went! I had a 104 fever through four states. It was 112 degrees outside and I had chills and a fleece blanket. Once we arrived, I was so ill that we unloaded and my husband got me back in the car to go to a nearby hospital. We sat in the waiting room for nine hours. I was hemorrhaging. When they took me back they said, “Oh you have a UTI. And postpartum depression.” Say huh? That causes hemorrhaging these days? A doctor in Virginia had suggested that as well and I had to go to a counselor. During that first visit, she said, “It’s clear you’re not at all depressed. Rather, you seem scared.” Anyway, the ER treated my fever with Tylenol and it responded, down to 101. They said, “Sorry you have walking problems. It’s your weight.” Fun times.

We left. Guess what?? Fever was back to 104.5. Also, BIG allergic reaction to the IV med they used to treat my UTI. Back we went. A doctor took one look at me and said, “Oh! You are very ill! I’m going to run these tests!” Tests revealed I was suffering from sepsis (a bloodstream infection). He gave me two weeks to live. Hi, I have babies! I got shipped to a smaller hospital two hours away because the Joplin, MO tornado hit and I was not a priority patient. I woke up in a new place, sicker than ever. A nurse was standing next to my bed with a breast pump. “Dear, you must wake-up so we can pump some milk and see if it’s poisonous.” Whaaaa?!?!? I’ve been poisoning my baby? She added, “Fifty percent of babies need serious medical intervention from poisoned milk; the other fifty percent just poop green.” Called mom. Baby was fine. Five days passed and hubby was running back and forth between kids and mommy. He had to go back to Virginia. Vacation’s over. So he got me to my mom’s and left (I’m not cured, but better). Tears!

For three weeks, I sat on the couch. My legs started loosening up and I could take 10-15 steps on my own. I could change diapers, people!!! Oh, I was a happy momma. At night, I sat on the couch by our little baby in his pack-n-play. Bottles, burps, kisses: these little things helped me get through immeasurable physical pain still occurring in my abdomen and legs. I also felt like my heart was beating through my spine. I taught my oldest how to make all the basic foods, as I couldn’t always get up to make foods when he wanted them. We called it “big boy tools”.

The last night before my husband came to get us, I started bleeding again. Buckets. And kidney pain out the yang. He arrived and we loaded the car. I cried all the way to Kentucky, but quietly. I didn’t want my kids to know. I said, “We must stop. I am bleeding to death. I feel death is near.” I fell on the counter inside the convenience store and told the poor teenager workers I was dying and need an ambulance. While waiting, I went back to the car and I put on a brave face and talked to Oldest while holding Youngest’s bottle. The ambulance arrived and we caravanned, oh, 60 miles.

At the hospital, I was told to lay down on the bed at the hospital, but I begged them to let me sit. They have no idea what we’ve been through. The girl across the hall had my same first and last name, with the exception of three letters. Really??? So she got my doctor first by accident. I waited three hours, alone, as I told Hubster to get the kids to a hotel with a pool and play. Finally, the doctor. “Ma’am, you are not urinating, only bleeding. I bet it’s a stone. Oh here, tests show a UTI. And your sepsis test takes 72 hours. So here’s your walking papers!” Really? I begged him to admit me. It was 3:00a.m. My pain was a ten out of ten, and I am bleeding so much I couldn’t keep it from getting all over the place. A nurse cut off my wristband and I went to the lobby. Hubster and kids drove out and took me to the hotel. The next morning I was crying at the continental breakfast bar. I could see how I was no longer a necessary element to our family’s function. People were dressed, fed and packed. It took all I had to walk from the elevator to the car.

We got home to Virginia about 3:00p.m. I had Hubster drop me at the hospital. I said bye to my boys like I had once before. Like when I had had pain and bleeding so immense that I thought I should get in my last kisses. After argument from staff about how I was a frequent flier, I got a CT scan, which I demanded. They found 66 kidney stones. I met with my urologist four long days later and he had read my whole, entire chart. “Renee, this bloodstream infection usually eats heart valves. I need you to get an echocardiogram.” My infectious disease doctor does a heart check before the echo and jumps back from me. “Do you have a murmur? Because right here, I hear a large hole in your heart!” Ok. Echo, done. “Hi, I’m a cardiologist. You need open heart surgery. Now. You have 48 hours to live. If you want a second opinion, call them on my personal cell phone because there’s no time.” Ok. My kids are at the sitter. My husband’s at work. My mom drove in yesterday, before any of this was known, because she “felt like something was wrong”. She was holding my hand while we got the news and I think I broke her pinky.

I was admitted and tests started immediately. I was too sick to operate. I had to wait. But could die. My kids weren’t allowed in to visit until the night before surgery, as my “valve is hanging off and excitement could push it to the brain causing immediate death.” The night before surgery, I said goodbye to them. Like for real this time. I was convinced those first two times were practice. I bawled like a banshee when they left. One of my best friends and my husband spent the night with me. I had taken two antiseptic showers and I had my game face on. I looked at the sunrise and told the doctors I would see tomorrow’s sunrise.

Nine hour surgery. Recovery. Five weeks more in the hospital. Cardiac rehab. Home.

I have to re-bond with my little baby who is now three months old. My oldest is overjoyed mommy is home. But I still can’t be alone. After several weeks, I was feeling better, fully bonded again and part of our family mechanics! Oh, did I mention I lost my full-time job during these events, where I had worked as a counselor for several years due to “restructuring”? And you aren’t allowed to draw unemployment if you’re under a doctor’s care. Yeah. We couldn’t get food stamps, Medicaid, WIC or any other government support. Still had all the same bills with half the income. Add in monstrous medical bills, a home nurse for three weeks and picc line maintenance charges. Yeah, we made $80 too much per year for federal assistance. For reals? That’s two gas tanks.

Anyway, it was time for kidney surgeries. Sixteen in all. One surgery went horribly wrong, causing another “you have 48 hours to live” and required two extra corrective surgeries and 16 blood transfusions. I was sent to a larger hospital for these life-saving procedures. My husband had to be home with the boys, as these things happened so often, we got tired of asking friends to care for our boys, fearing they’d feel taken advantage of. A dear friend rode in the ambulance with me. I spent the next three days throwing up and bleeding profusely. Even my nurses said, “Oh sugar, I dunno if you can pull through this one!” I had blood thinners on board due to my mechanical heart valve in place, so that exaggerated the bleeding.

Oh my poor babies. Weeks of curtains closed, babysitters for mommy, mommy stuck to the couch, trips to the doctor. But you know what? After that last surgery, it was over. Mostly. I just had to endure many ureter stent placements for draining my kidneys.

On my first day with no scheduled surgeries, my oldest climbed in bed with me and started crying. He said, “Mama, you don’t know, but I cried at night while you were gone. I beed brave for you. Now, it’s time to cry together. Let all your tears go in my hair so they don’t get wasted on the ground.” Really???? You’re 5??? All of us were bawling.

It was a new day. My nightmare had ended and I began mourning the long nights awake with my newborn, piles of 0-6 laundry, walks with the stroller, and so so much more. I couldn’t even hold my three-month-old until November and it had already been since July. I now completed laundry with joy! Nothing could shake me! But there was that whole now-you’re-losing-your-house and have-to-sell-everything-but-your-kids just to eat. Sure, food banks were nice, but having both worked in a field where we helped with food banks, or drove clients to the food banks, those people knew us. And we were not always received kindly.

I can tell you, I’m not your average parent of small, growing kids. I’m not the mom with the jogging stroller at the park. I’m not the busy carpool-driving mom who “does it all”. In the last two years since surgery, I missed my oldest getting dropped off by the bus due to passing out; I’ve had a heart attack; I’ve needed two surgeries to stop bleeding and in turn required several blood transfusions. Most of my surgeries since 2011 have made me sterile. I’ve logged 137 days in the hospital away from my babies and husband. I’ve sat in an empty hospital room, wondering when my last breath would be. Would I know? Who would find me? I’ve made thousands of friends who are nurses and doctors, because I make time for them in my schedule (that was a joke, but true). I’ve learned a lot about health, and although my problems were caused by a freak occurrence of endocarditis, I’ve worked hard to save the rest of my heart by losing 154 pounds since surgery. I can run, but I mostly walk. I can be mommy! I can get on the floor and play! I can go to Chuck E. Cheese! I can be me. I have great stories to tell! The craziest one is that I called my son’s school to cancel the parent/teacher conference we had scheduled… because I was busy having a heart attack. I sit in waiting rooms with 30 ninety-year olds and learn so so much.

Jesus is our source of strength. We trust him through all of the crazy twists life throws at us. We are thankful for me being alive. And for Youngest not being poisoned.

In addition, many friends and family have helped us through these years of hard times. People sold vehicles to pay for our mortgage so we wouldn’t lose it all. But we couldn’t hold on anymore. We sold the house but had to bring 1/4 of the mortgage with us as a personal loan due to poor housing prices. We are trying not to let that eat us alive.

renee 2We now live with my mom in Missouri. I went back to work full-time for nine months last year. I was stuck at work many times, as we didn’t have money for gas to get home. Not to mention health scares here and there, adding to our medical debt. Most difficult was the $800/month health insurance, for myself. The kids were never hungry but Hubster and I shared plates. We wouldn’t change our journey, but we don’t want to do it again.

Today, I’m a stay-at-home mom! I love it! My medical team just isn’t sure I should work out of the home at this time. We are closer than ever as a family of four. My husband is working hard to rebuild our financial stance, as it had completely disappeared.

We will get back on our feet! And I will take each step with joy.

renee 3.

Note/Update from Okayest Mom: In my post Please Consider Helping My Childhood Friend this Christmas , I asked for my readers’ help in passing Renee’s Indiegogo fundraising campaign along. We were hoping we could help her and her husband pay off some of their staggering medical costs. I personally thank each of you who prayed, shared, or even donated. I am happy to report that they raised a take-home total of $10,330.75! Renee writes, “We are filled with gratitude. Thank you for every prayer & share – each one a treasure. Thank you also to Jesus. Each and every donation was a blessing and brought freedom. We are taking a sigh of relief tonight and every penny has been used to pay off my health insurance and 47 doctor visits from 7/2013 thru 2/2014!! That was chunked in one bill and it was eating us alive! NOW, it’s PAID in FULL!!! Thank you. We take none of you for granted.”

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4 thoughts on “Guest Post: When lllness Interferes with Motherhood

  1. She’s a strong lady. I’m so proud of her and am glad to be there to support her. It’s amazing how many people ignore the “in sickness and in health” part of a marriage, or who don’t even get to see the “sickness” side. I’m proud to have been there for you, and would do it all over again. May it never happen again, though! Here’s to a lifetime of health!

    Like

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