Chapter 12
Miracles of the Heart
Except for visits to the hospital and Dr. Wineinger’s office, we were homebound for our Minnesota winters to protect Becca. I missed attending church and I wanted to have Becca dedicated to the Lord on dedication Sunday. Surprisingly, her doctor cleared her dedication. Becca could be dedicated at the Baptist church I’d attended since childhood. Pastor Rick continued to be a huge support to our family and he was honored to be able to dedicate Becca to God. My church had felt like a homey sanctuary since my parents, my siblings, my aunt, uncle and cousins were all a part of our
congregation. For months my daughter’s name was on the church sponsored prayer chain, and the entire congregation invested time to pray for my tiny daughter.
During the service Pastor Rick called Jim and me forward with Becca and his treasured words and their meaning were sealed into my heart. They carried me on angels’ wings when I struggled. He told the congregation, “This tiny little one has a purpose. In her short life she has inspired many who have come to love and hear her story. She has a mission. She is here for a reason. Through her challenges she helps us realize that life is short, and we need to make each day matter.” Little Becca looked up at her mommy and daddy and Pastor Rick. She smiled. The tender magical moment moved the flock and even the old men wiped their eyes.
After the service an elderly lady really named Alice came to me and gave me a huge hug. Alice had been sending me cards and notes, of encouragement and support, over the past few months. She was encouraging me while fighting Leukemia and her last days were spent helping others cope through cards and prayers. She told me that we were blessed by our adversity. From this experience we will understand that life is precious. Having this type of life trauma this early in our lives was a gift. We would grow up to understand what life is all about while we were young and we would be better for it. Months later she peacefully lost her battle to cancer. She was not afraid to die; she wrote me that she was moving on to a place of perfection. In time I would understand what she meant. That day set the stage for the future. “We would come to find incredible blessings in the face of adversity, and we would be changed for the better.”
After the service, Pastor Rick presented us with a check. For the first time in the history of the church, they had taken up a collection from Sunday school classes and services to raise the funds to save our home. We were two payments behind; the check was exactly what we owed. It was $l500. Through tears of joy, I hugged Pastor Rick. Once again, God answered my prayer. As always, God knew exactly what we needed.
He provided. I just had to trust and have faith.
Word had spread through our congregation that I had to move the girls from their bedroom into the boys’ unfinished room in the basement, and volunteers worked weekends and evenings to finish their new rooms. Jim’s dad had owned a hardware store and he plumbed the new bathroom. My uncle and Dad wired the basement. Jim added scraps of gently used cream carpet that he had salvaged from one of his customers. The freshly taped sheetrock made the rooms look nearly complete. We had applied to the waiver program for the basement bathroom fixtures. With eight people and all the nurses, one bathroom was not enough. Every time we wanted to use it with Becca we had to disinfect it and most often there was a line waiting to shower or use the toilet.
And Jim was locking the door!
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Becca was almost six-months-old and a recent stretch in the hospital had confirmed our suspicions that her heart was failing further. The doctors agreed to try to do a cardiac catheterization, when the cardiac surgeon tries to balloon the obstructed pulmonary valve on her heart to see if they could open up the valve relieving the pressure. The procedure was very risky for such a tiny, fragile person, but we had little choice. We chose to risk her life to save her.
It was almost February, the month of hearts and love. Becca’s heart screamed for help. Red and pink hearts shouted from all directions. Hearts covered the windows of retail stores. Hearts hung from the ceilings of grocery stores. Hearts, hearts, hearts and more hearts surrounded and called at me. Hearts were bittersweet, her failing heart was broken and our hearts were filled with love for our tiny baby. My children cut out hearts that now lay all over my kitchen table in paper piles.
As I was sitting at Becca’s bedside with Mary, I had a brainstorm. I needed a moment to celebrate Becca’s infinitesimal life. She may never see her first birthday, and her sixth month birthday was two days away. We could throw a party for her! Since our camera had been stolen, we had few pictures of our tiny little tike except for the ones taken by the nurses.
Mary suggested I borrow a camcorder from someone, but no one in my family or circle of friends had one. We continued to banter around ideas, and Mary decided we should call Make-A-Wish and tell them about my wish for Becca. Surprisingly when I called, I reached the Executive Director, who listened to my wish for a camera to use for a few hours to remember Becca. She told me that Make-A-Wish grants children their wishes, but Becca was only a baby and she was too little to have a wish of her own. I thanked her and hung up the phone, it had been worth a try. Reaching out to ask was not as hard as I thought it would be. I was saddened; it was unfair that my baby could die before she ever got a wish of her own.
I shared my party idea with my friend, Val. We could invite family and friends. It could be after dinner, a potluck dessert party and I was psyched. I barricaded myself in my room after the kids were in bed and turned two pieces of fabric into a beautiful party dress for my little Cinderella. Becca had been rehospitalized and was coming home on a two-day pass preceding her risky heart procedure. Those two days gave us time to party and Val spread the word to friends and Becca’s support team while I called family.
While the nurses cared for Becca, I cleaned the house. Val’s four girls and my kids made posters and decorated the dining room. We hung red and white heart streamers from the ceiling, looping and twisting them in fine party fashion. As word spread offers of paper cups and plates poured in. Red Valentine napkins arrived. Everything was coming together in record time as I put the finishing touches on the secret little dress. While we were busy festively transforming our home, the phone rang. Kristy shouted it was Make-A-Wish and they made an exception for Becca. The simple act of wanting to have a memory as a family to cherish moved them and they made a way for us to borrow a camcorder, and use it for a few precious weeks.
The camcorder arrived via messenger, and Val happily volunteered to document the event. I presented the new dress to Cheryl to put on Becca for her party. Val and the camera followed the arrival of the guests bearing Valentine’s Day presents. The nursing agency sent a huge bouquet of helium heart balloons. Valentine gift bags, red heart wrapping paper, balloons and more balloons arrived. Flowers, gifts, heart shaped cookies, heart shaped cakes, and heart candies magically appeared and filled the dining room table. Soon the top of Jim’s grandfather’s antique buffet was mounded with scrumptious goodies of all sorts. Our heart-themed home was lovely and ready to welcome guests.
As we were getting ready for the party, we were surprised by a knock on the front door. It was a photographer and camera crew sent by Make-A-Wish to professionally document the party for the creation of a special video of Becca and our family before the guests arrived. The camera crew captured my mom and dad, brothers and sisters, aunts and uncle, and cousins as they shouted ‘Happy Half Birthday Becca!’
The camera crew captured the over a hundred people who stopped in to share Becca’s special half birthday, friends from church, old family friends, and neighbors joined us to celebrate our little girl. When the camera crew and the guests gathered together, the nurse brought Becca out in her new heart dress.
The dress was my gift to my daughter, a one-of-a-kind creation. The delightful little pinafore dress was white with red hearts, decked with tiers of ruffles capped by dainty white lace. The front neckline was a ruffle of red with white hearts, which matched the dress underneath, peeking out from the dress were darling teeny tiny fancy bloomers to match with a heart appliqué on the backside of her diaper. Her little head was crowned with a matching lace headband made with ribbons and a red heart. I had been sewing for a crafting friend, and she surprised me with a new, unique creation, a hand painted heart dress for me to wear that evening.
Pastor Rick was right, Becca inspired hope in others. Her tiny presence was a vehicle of healing wounded hearts. I was moved when Marissa’s little friend, Amy; held Becca. Amy had heart surgery as a baby. My aunt held Becca; she had given up her daughter Cindy with Down’s syndrome back in the l950’s to foster care before I was born. Cindy ended up in an institution and died at age thirteen from heart problems. It was a family secret until Becca’s birth. She looked at Becca with tears in her eyes; Becca’s presence opened the path for her and me to safely discuss the differences that time had made for children with disabilities in the future.
Kristy took out her cello and offered a recital of her new repertoire of songs for the guests. The kids and their friends ran through the house with smiles and laughter. It was a miracle we could send them all downstairs to play as the basement now had partitions and newly hung sheetrock for two new bedrooms, a bathroom, a laundry room and a large family room.
Kids ran up and down the stairs to get food. Marissa packed her round little cheeks like a squirrel with peanuts and candy and scurried off to her friends. The boys dumped out all their Lego’s. Ian was chased and taunted by the girls who thought he was cute. Val’s daughter was in love with him and caught him to plant a kiss on his cheek.
Val called all the kids upstairs, and everyone gathered to sing Happy Birthday to Becca. My mother held her sweet little granddaughter as Kristy opened the huge pile of presents. Kristy appropriately took her time, reading each card aloud for the watching guests and passed them around for guests to admire. The gifts were caring and thoughtful; picture frames and photo albums, musical animals and furry little stuffed critters, outfits and sleepers. Someone filled a box with diapers, lotions and baby bath products.
On the spur of the moment people drove for hours. Jim’s mom and dad drove 180 miles to celebrate with us, and Aunt Mitzi joined them. Another aunt surprised us when she arrived in from Wisconsin. She always lived with my grandmother who had passed away the month before and we had been unable to travel out of town for the funeral.
Big sister, Kristy handed me her special present for her little sister. She had used all her savings from neighborhood babysitting to buy Becca a little two-piece pink and mint green bunny outfit. She was so proud of doing it all herself. That evening the house was alive with laughter . . . the laughter all of us needed in that time of stress and uncertainty. We found hope. We were surrounded by love and so blessed by those individuals who reached out to us as a family.
As I was eating my ice cream, I took a little bit on my spoon to give Becca a birthday dessert sample on her lips. Since the first early days when she quit accepting a nipple, she had never had any food item touch her little lips. Tonight she seemed to understand that this was her party, and she was going to try something. She squished up her nose from the cold and then licked her lips not quite knowing what to do with it. With everyone in the room laughing she smiled in the excitement.
As the evening wound down, we had a house full of company, and three-year old Matt had slept through all the noise and commotion. He woke up in time to go back to bed as the last of the guests left. Matt stared with half sleeping eyes at the overflowing table of goodies, and he grabbed a handful of gluten-free heart cookies. Then he snuggled in his father’s arms, quite unsure of what had transpired while he slept.
Cheryl readied Becca for sleep while Val and I cleaned up the party mess. Tomorrow, bright and early, we would depart for the hospital, this time to try and help Becca’s teeny tiny heart.
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Heart surgery morning came too quickly, and we loaded Becca and her boatload of equipment into the stroller . . . and then into the van, and then out of the van . . . and into the stroller . . .into the lobby and up the elevator . . . back to the intensive care unit. After six months I knew the drill. Labs, labs and more labs . . . wait, wait and more waiting. This time I didn’t run.
I sat. I waited.
I prayed for everything to be all right.
I looked up at the approaching doctor.
“Becca was out of surgery. The passing of the balloon through the valve was not successful. The valve was too misshapen to be helped. He had taken biopsies of the thickened wall of the ventricles of her heart to see if it would shed light on what kind of cardiomyopathy Becca had. As he was slowly pulling out the catheter during the procedure Becca gave him quite a scare. Her heart went into ventricular tachycardia and raced out of control. Fortunately with administration of medication he got it to resume a normal rhythm. We could not go through any procedures without Becca scaring her family and physicians with some heart-stopping prank. She kept us all on our toes, and when the moment passed those gargantuan episodes strangely eased the huge fear and uncertainty of the moment.
She remained under close observation in intensive care for the next couple of days. With every surgery Becca seemed to require IV antibiotics and she always spiked a high fever. The blood cultures revealed deadly systemic staph infection, even though they had given her IV antibiotics. The medical staff worked to get her temperature down and her feedings back on track so she could go home to her private pediatric intensive care nursery.
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The home-nurses were set to greet us when we arrived, offering welcome home smiles and support unraveling and navigating Becca and the stroller back to where she belonged.
The news of Becca’s heart was not good, but for today she thankfully was still alive and home.
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I knew in my heart of hearts we were on borrowed time. She was destined to the fate of many critically ill babies. Becca was as sick as it gets and I didn’t know any other Noonan syndrome babies with as many complications as Becca who were still alive.
Sometimes I wondered if making her stay was wrong. I wondered about her quality of life. She was in such pain and it was so hard to see her suffer. Were we right to allow it to continue?
I chose to honor my promise to God.
I would love Becca no matter where it would take us.
Thank you to Make A Wish for their incredible gift of memories with Becca.
Thank you to our everyone for making Becca's birthday a miracle of the heart.
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