by Heather Avis
Then God’s still small voice reminded me to look at how far he had brought us. He reminded me to let him be God and do his thing. He reminded me that no matter the outcome of this surgery, he was still God, he was still good, and I am forever Macyn’s mom.
So rather than run, I handed my baby to the anesthesiologist and fell into my husband’s arms and we cried. The anesthesiologist held our baby over his shoulder, and we watched her sweet little crazy-haired head bounce gently up and down as he walked, and she looked back at us, a picture forever etched into my memory. Then the doors closed, and she was gone.
By the time we walked into the downstairs waiting area, the sun had risen. We were greeted by family and social workers and friends, and instead of sadness and fear, an inexplicable and much-appreciated peace wrapped itself around me. What should have been an uncomfortable and scary time was drenched in holiness. I sat in that waiting room, and it hit me: this event was less about my daughter’s open-heart surgery and more about having a front-row seat to God’s goodness. The thought and the feeling left me breathless.
Isn’t that just like our God to surprise us with beauty? Up to this point in my journey, I had seen him take so many seemingly ugly, hurtful, terrifying things and reveal the beauty in them. Again and again and again he had graciously proven his power and faithfulness. On the day of my daughter’s open-heart surgery, the day that should have been the darkest and scariest of all, I found my Prince of Peace. All that God had been teaching me about who he was and who he wants me to be was coming together in that hospital waiting area. I had always believed that God uses all things for his glory, but on that day, he showed me. I had never known God as fully as I did then.
All of us have the opportunity to witness these kinds of miracles from the Father, who transforms our fear into hope. For you, the fear may not be rooted in Down syndrome and heart defects. But those miracles are out there, waiting for us to sit down in our front-row seats while God does his thing.
On the cardiac/organ transplant floor was another waiting room lovingly set up by parents who had been in our shoes. The quiet space had soft lighting and comfortable chairs, and a desk with a hospital computer in one corner. A mini fridge had been stocked with snacks and drinks. Encouraging messages were painted on the walls, and booklets full of hope sat on a small table, along with disposable toothbrushes and other travel-size toiletries.
I grabbed a cold bottle of water from the fridge as my parents and Josh each took a seat in one of the comfortable chairs. Soon afterward, Dr. Razzouk came through the door. He was still wearing his scrubs. His kind and humble eyes met ours, and he got straight to the point.
“The surgery went well. I’m glad we got in when we did. Had we waited much longer to close the hole, I’m not sure this surgery would have done much for her.” He held up his finger and thumb to make a circle. “I patched up a hole the size of a nickel.”
We all gave a little gasp, imagining a hole that large in such a small heart.
The doctor continued. “The next twenty-four hours are critical. I have done all I can do; she is in the Lord’s hands. Can I answer any questions for you?”
We should have had a thousand and one questions for the man who had just patched a hole the size of a nickel in our daughter’s heart, but the only thing I could manage to ask was, “Is she going to be okay?”
He softly answered, “There are no guarantees. The surgery went well, and she is a strong little girl. As I said before, she is in the Lord’s hands.”
Josh stood up first and extended his hand. “Thank you so much.”
“Can I give you a hug?” My arms were around the surgeon’s neck before he could answer. “Thank you for everything. Thank you for saving my daughter’s life.”
“It is an honor, and I am humbled by people like you who choose to love this little girl.”
I stepped back, held my hands to my heart, and simply nodded my head.
A few moments later, a nurse led us to see Macyn. We followed her to the secured wing and watched as she waved her badge over the sensor on the wall. The automatic doors swung open. She repeated Dr. Razzouk’s words as we followed her down the hall.
“The next twenty-four hours are critical.”
We nodded and tried not to step on her heels.
“During this time, visits can only be ten minutes long. There can only be two people in the room with her, and one of them must be one of you.” She stopped outside room 501 and looked us in the face. “Your daughter is hooked up to a ventilator and lots of other wires and machines. There are two nurses fully committed to her for these next twenty-four hours. She is in the best possible hands.”
I tried to peek over her shoulder into the room.
“Can I answer any questions before you go in?”
Josh and I looked at each other and shook our heads.
“Okay then.” She moved aside to let us in. “Your daughter is in bed one.”
No amount of information could have prepared us for what we saw in that bed. Our daughter was there, but besides her crazy hair, she was difficult to recognize. She was propped up on pillows. Her mouth was open, and out of it came a bumpy tube hooked up to a beeping machine that was helping her breathe. Her eyes were shut and red and swollen from the tape they had used to cover them during surgery. Her left arm was secured by a stiff board and wrapped with a bright yellow sock to protect the IV underneath. Her chest was covered with white gauze, and at the bottom of the gauze near her belly button was a drainage tube, red with the blood and other liquids still needing to drain out of the area that had just been cut open. On the pillow next to her were half a dozen smaller tubes labeled with yellow tape, each one connected to a main line in her neck, each one dispensing a necessary medication to keep her alive during this critical time. Her skin was swollen and red at the places where surgical tape had been removed.
The two nurses assigned to her for the next twenty-four hours, a sassy and cheerful Latino man and a sweet curly-haired woman, were softly communicating with one another, spouting off numbers and words completely foreign to me. They glanced at us as we stood in shock in the doorway and motioned for us to come in, not once losing track of their task at hand.
“She’s doing great so far,” the nurse with the curly hair told us.
“Can I hold her hand?” I managed to choke out.
“Of course you can,” the nurse replied. “We just want to try to keep her sleeping. Rest is important right now.”
Josh and I slowly and carefully made our way to the side of her metal hospital bed and gently wrapped her tiny fingers around ours. I looked down at my daughter.
“Hey, sweet girl. Mama’s here.” I smiled through my tears. “I’m so proud of you. You are doing great. You are going to be fine, my sweet girl.” Then I softly sang her the song I had written for her the day she came home to be mine:
Who’s my little girl with the biggest eyes?
The crazy hair?
The brightest smile?
She’s my little one; I love her so much;
I’ll love her for ever and ever and ever.
Macyn, Macyn, Macyn Hope, Macyn Hope.
Macyn, Macyn, pretty little Macyn Hope,
Pretty little girl.
As I sang, my tears landed on her little arm in a puddle of healing love. She began to stir and then grimaced and let out a little cry. Her discomfort was obvious.
“I think it would be best to let her rest.” The nurse with the curly hair smiled at us. “You can come back in an hour.”
“Okay. Take good care of her.” We lingered a little longer and then slowly backed out of her room. As we headed toward the main doors and pushed the button to leave the unit, Josh put his arm around me, and I leaned in and we both cried. Tears of joy for the fact she was alive, tears of shock for what we had just witnessed, and tears of terror over what might happen in the next twenty-four hours.
We spent most of our time in the crowded waiting room down the hall, w
atching the clock and counting down the seconds until we could spend ten more minutes with our girl. We would walk quickly to her room, always a minute or two early, and walk slowly away, always a minute or two behind. With each passing hour, Macyn became stronger.
The morning after her open-heart surgery, we entered the room during one of our ten-minute visits and found they had taken her ventilator out. She was breathing completely on her own. They also let us know she had been weaned off two of the medications. And one of the night nurses had put Macyn’s crazy hair into an adorable ponytail spouting from the top of her head and tied with a tiny red bow. My daughter was looking more and more like my girl. I breathed a little easier.
The next four days were full of beeping machines, little sleep, and the comings and goings of family and friends. On day three, we got to hold her and feed her and whisper in her ear. She was still attached to machines and a mass of cords and tubes, making it slightly terrifying when I would pick her up and a machine began beeping louder and faster because something had come loose. But the nursing staff was pure gold, and they guided us through every tangled tube and upsetting alarm.
I was feeling good. In fact, given the circumstances I was feeling great. I had been thrown into the middle of the ocean and quickly learned I could swim. I dealt with the rip currents and waves like a pro. I was rocking it as a mother with a child in the hospital. This both surprised and pleased me. I was strong enough for this, by God’s grace. I was stronger than I ever thought I could be. o
Macyn spent a total of four nights in the hospital. As her last night unfolded, the nurses removed all of the tubes and cords except the oxygen tubing. They took the white gauze off her incision, and by morning, she was ready to go home.
We showed up that morning before the sun was up, with Macyn’s car seat in hand and a darling little going-home outfit for her to wear. The next few hours were full of discharge instructions and trips to and from the pharmacy to pick up medications. We met one last time with her cardiologist and her surgeon. Both doctors gave us a reassuring thumbs-up and told us to bring Macyn back to see them the following week. A pediatrician came by to answer our questions. She flooded us with pamphlets and information about symptoms to watch for and when to call 9-1-1. Josh and I listened wide-eyed, nodding our heads, trying to pretend we were tracking with her. The strength and confidence I had felt throughout our hospital stay was slowly dwindling.
By early afternoon, all of our discharge tasks had been checked off the list. As we buckled up Macyn, the nurses packed all the extra diapers and bottles and put them in a bag with the stuffed animals and signs that had accumulated in her room during her stay. With thankful hearts, we tightly squeezed the nurses who had been loving on our girl for the past few days. Then we headed to the elevator.
When the sliding door closed, I looked down at my daughter and said out loud over and over, “Thank you, Jesus. Thank you, Jesus. Thank you, Jesus.”
Four days ago, I had walked into the hospital thinking I knew my Savior, only to experience his love, goodness, and faithfulness in a way I never knew possible. I was leaving that hospital a changed woman. While Josh carried Macyn in her car seat and I held his hand, I continued to weep tears of gratitude that God would allow me this opportunity to know him more fully.
When we pulled into our driveway that afternoon, my parents were there with a hot meal. Our fridge was full and our house was spotless. We had set up a bed for Macyn in our room, right next to my bed. Our recovering little girl was asleep when we arrived, so I gently carried her upstairs and laid her in the bed. I checked to make sure her oxygen cannula was secure and kissed her nose, and then I turned on our video monitor and headed back downstairs. We began unpacking the new regimen of medications. Some needed to be refrigerated, and each one needed to be given at a different time, multiple times a day. Josh made a chart so we could track what she had taken and when. I made my way to the kitchen and laid out all the medications and put the syringes in a bowl next to them.
As I headed to the living room to unpack the extra diapers and pull out the signs and stuffed animals, my dad stepped in front of me and gave me a big hug.
“Hey, Elizabeth, you did it. You’re home.” And at that moment, something in me broke. I had been strong during our time at the hospital. But now that we were home and I didn’t have the nursing staff and doctors to keep my daughter alive, I was finding the responsibility of it all more than I could take. I fell into my dad’s arms and sobbed.
“I don’t know if I can do this. What if I forget a medication or she stops breathing? Dad, what if she dies?” He held me tightly, and I trembled with emotion.
“Heather,” he gently replied as he took my shoulders and held me so he could look me in the eyes. “Heather Elizabeth. Every breath she will ever breathe has already been accounted for. Nothing you do or don’t do is going to change that. Heather, God’s got this. Okay? He’s got Macyn, and he’s got you.”
There it was: life-giving, life-changing truth. We had sat in the hospital in the shadow of death. Now we were home, and that same shadow was knocking on my door, but the truth of my dad’s words drowned out the racket that death was trying to make.
The truth my dad spoke that night was branded on my heart. And as the days and weeks and months and years went on, I would say the words out loud whenever I needed to drown out the fear that death would whisper in my ear.
“Every breath she will ever breathe has already been accounted for. Nothing I do or don’t do is going to change that.”
6
Pictures and Letters and So Much More
When we were nearing our one-year anniversary of bringing Macyn home, we got a call from our social worker. As I answered the phone, I had a feeling I knew what she was about to say.
“Hi, Heather. How are you guys doing? How’s Macyn?”
“She’s amazing. Things are going really well.”
“I’m so glad to hear it.” She got right to the point. “I’m calling because Macyn’s birth parents contacted us and wanted to see about getting together with you guys. It’s been about a year since they last saw you. What are your thoughts?”
Knowing we had given them hope of a once-a-year visit, I knew the answer was yes. But it didn’t change the fact that I felt sick to my stomach about it. I had no idea what to expect. Would they see her and regret their decision? Would they be judging the way we parent? How would their daughter, who is only eighteen months older than Macyn, react to her sister? What would we talk about?
I pushed all those thoughts aside and said, “Of course we can meet up with them. Can we do it in your office?”
“I think that’s a great idea. I’ll get in contact with them and set things up.” We talked about a good day and time for us, and I hung up the phone full of mixed emotions.
It was a strange, strange feeling to step into a meeting with my child’s birth parents. When the day of our visit arrived, Josh and I stood outside the door of the meeting room with our daughter in my arms. And while she was not from my womb, while she was not our blood, she was our daughter in every right. Yet on the other side of the door was a woman I could never compete with: the woman who can look at my daughter and see herself, something I will never be able to do; the woman who cried happy tears when she heard my daughter’s heartbeat for the first time, followed by tears of anguish when she decided she could not be the mother Macyn needed. She was the woman who gave my daughter life—and me the opportunity to be a mother.
This was a new space for us. I wasn’t sure how to navigate what awaited us beyond the doors.
When we adopted Macyn, we chose to use a private agency. At the time, we were both working and could afford the expensive price tag, but our main reason for going with a private agency was that we thought it would be our ticket to a healthy infant. Also, our research led us to believe our best and safest bet to growing our family as comfortably as possible was through a private agency. Even after all I had learned through my i
nfertility journey about trusting God, I was still trying to grasp as much control as possible. Bad habits are difficult to break, I guess.
The agency we chose required an eight-hour class to prepare us for what lay ahead. During the session, we heard stories from adoptive parents who showed up for their baby’s birth, only to find out the birth mother had changed her mind. We heard from foster moms who took babies into their hearts and homes until every i was dotted and every t crossed and the baby could be placed with adoptive parents. We talked about adoption laws. We were given lists of things to do to make our home safe for our future child. We received stacks of paperwork to fill out. But most of the class time focused on the birth parents.
I had no idea there were so many variables when it came to our future child’s birth mother and birth father. Most of us in the classroom that day would be chosen by a birth mother. We would meet her and hopefully the birth father before the baby was born. After the baby was placed in his or her adoptive home, many birth parents hoped to exchange letters and pictures with their child. Some birth families asked for a once-a-year visit in a neutral location. We were told that rarely did birth parents know the last name or address of the adoptive family. Communication between us and our child’s birth family would most likely go through the agency.
Then we heard from birth mothers themselves. We watched a video about a young woman who created an adoption plan for her daughter. She looked through binders full of parent profiles. She chose and eventually met the people she hoped would adopt her baby. Years later, she attended her child’s birthday party.