NOTE: This is a new series I will slowly be working my way through. All of the posts will be linked on the NICU Mom Series page, so bookmark that page, share it, Pin it, and feel free to share your own experiences as well.
The day I had Mercy, I know many of you expected me to post about her birth, or at least share something in the day or so following. Instead, I went silent.
That morning, I was excited. The pregnancy had been hard. I was ready to have baby in my arms. We laughed and joked with the nurses – many of whom stayed over their shift to see if we had a boy or a girl. We chatted with my doctor who had become like an old friend who just happened to have delivered 4 of my children. It was my first scheduled c-section. I felt like finally I had control over the entire process, and it felt good.
As I lay on that operating table, waiting, I remember thinking it was all taking an inordinately long time to get baby out. From there, things got complicated.
The first thing I heard was, “Whoa, that’s a lot of amniotic fluid!” The next thing I heard was, “She has a cleft.” It was at that point I began to shake.
I remember trying to catch glimpses of my baby girl as they worked on her near my head, but I could only see that she was purple. No crying. No “pinking up.” No moment of relief. And then they announced they were taking her to NICU…and at that moment, my world changed.
My husband left my side to be with our baby girl. I have never felt so alone in my life – shaking, scared, completely in the dark about what was happening on the other side of those doors. Finally, my surgery was complete and my OB was at my side telling me she had another surgery, but she would be back as soon as possible to check on me. She was the only familiar face in the entire room, and now she was leaving me too. I was taken back to recover, and one of the nurses offered to stay with me. She tried to help me work through the shaking induced by fear and drugs – both powerful in their own rights. In the days to come, it would be the pain from the shaking that would far surpass the pain from the c-section.
I cannot tell you how long it was before I was wheeled in my hospital bed to my daughter’s crib side in NICU. I honestly don’t remember much about that trip. All I knew was that she was alive – hooked up to tons of equipment, but alive.
From there, I was wheeled to my room. Ty stayed with me for a bit to get me settled in, but then headed back down to NICU with a promise to come back for me soon. I was in and out after that, wearing off the side effects of the medications. At some point, I was helped into a wheelchair and taken down to the NICU where I was able to actually touch our little Mercy girl, but not hold her. In fact, in order to keep her calm, we were only allowed to touch – not stroke, not caress, not snuggle. Just touch.
Frankly, all the machines scared me. The entire environment scared me. But in the midst of the storm, God brought peace in the form of a childhood friend who now worked as a NICU nurse – she was my Mercy’s nurse. She and I had not seen each other in 25 years yet there she was…gentle hands, caring for my little girl in ways I could not.
The diagnosis was not clear. Mercy had a cleft palate – not a cleft lip. She had a recessed jaw. Her airway was obstructed by her tongue. She didn’t need oxygen, but she had to be intubated to keep her airway clear. And she was a fighter. At 11 pounds, 7 ounces, she was huge compared to the other babies in the NICU. She had to be strapped down to keep her from ripping the tube from her throat.
In a hopeful moment, the NICU team decided to try extubating her to see how she did. When it became clear she could not keep her airway, they tried to intubate again…something that would prove to be a tremendous struggle. It was after that the attending physician came to see us and express his concerns about her remaining in their NICU. If she were to fight and pull the tube out, they might not be able to get it back in this time. There was no other choice but to move her to a bigger hospital where her specific issues could be better addressed.
And so, 30 hours after her birth, she and my husband took a jet to Children’s Mercy in Kansas City. I stayed behind…to recover and try to learn to pump breastmilk to feed a baby who wasn’t even in the same state. Ty did his best to keep me updated, but I felt like I was living a different life. Friends came to visit me in the hospital, but no one held my baby, no one cooed over her tiny fingers and toes, no one took photos. They sat and listened to me ramble – half drug-induced stupor talking, half nerves talking. I was swollen, sore, and completely lost. All I could think about was getting out of the hospital and getting up to Kansas City where my baby and husband were.
A friend stayed in the hospital with me (I’m not sure she will ever know how much this meant to me), and when it was time, she and her husband took me up to Children’s Mercy to settle in to NICU life there.
Looking back, I was a mess. I tried to put on a brave face, but the first 2 weeks there, I had to be wheeled around in a wheelchair, and I could barely get into bed at night. The medications made me so sleepy I ended up sending multiple half-written texts to people I barely knew, and the hemorrhoids and swelling in my legs were so bad, I had to take the medication just to survive the pain. And yet, somehow I was staying at the hospital for hours on end and pumping every chance I got. Ty had secured a spot for us at a local Ronald McDonald house, but I didn’t spend a lot of time there. Finally, one of the night nurses sternly told my husband to take me “home” and not to bring me back for a good long while. That was when I finally began to heal.
At 5 days old, Mercy had surgery to break her jaw and place hardware that would slowly move her jaw out and clear her tongue from her airway. At 11 days old, her jaw was far enough out for her to be extubated, and for the first time in her life, we held her and heard her cry.
It was at that moment the shock began to wear off. I finally had a baby in my arms. It wasn’t at all as I had imagined, but I was no longer completely confused.
However, I still wasn’t sure what this NICU mom thing was supposed to look like. My baby girl had come through surgery and was breathing on her own, but not connecting with her from the moment she was born would prove to be a difficult journey for both of us. We were mysteries to each other. It would take months to fully bond – and as much as I hate to admit it, even now – 5 months later – I sometimes feel lost when I look at her.
Nothing truly prepares a mom to be a NICU mom. It is a process she learns because it becomes her world. The alarms and bells become a language she understands. Doctors and nurses become her friends. Cafeteria workers, other Ronald McDonald house residents, and the security guards who drive her back and forth at all hours of night and day become her neighbors.
But in the in-between moments of her life, somewhere between falling into bed exhausted and feet hitting the floor when she wakes up, she wonders how she got here. Nothing is as she had planned. Giving birth seems like a hazy dream, clouded with the memory of fear and confusion. Her life becomes a mish-mash of bizarre routines – pumping while watching YouTube videos, signing in and out of NICU and gathering her meal vouchers for the day, showing her wristband to security guards, and trying to figure out the right timing to leave her child’s bedside to eat, to use the restroom, to sleep.
For nearly 6 weeks, NICU was Mercy’s home. It is a big part of her story…who she is. It’s my story too. I had never been a NICU mom before. I had had a child in PICU, and that child was much sicker than Mercy, but this was a new experience all its own. I remember telling the chaplain through hot, stinging tears that I had to keep telling myself that Mercy was not Emily. I could not allow myself to “go there.” But, even if you have not lost a child, NICU brings out that raw fear and emotion. It is a place for sick children, and like it or not, your child is sick.
Every NICU mom has her story. Every NICU mom finds herself retracing her steps, trying to navigate where she is, all the while wondering what is around the bend. You become your child’s best advocate, but you have a love/hate relationship with that title because it usually means someone somewhere “messed up” and more than likely it happened while you away from your child’s bedside. Every time you leave the hospital, something happens…or you are afraid something will happen. You are live in a perpetual state of sleeplessness and adrenaline rushes.
But, all along, there was MERCY.
We did not know our little girl would be born with problems. We did not know she would live at a hospital with her same name for the first 6 weeks of her life. We did not know how powerful her name would be from the moment she entered this world.
Shining through. Giving us hope. Helping us put one foot in front of the other. God’s gift to us, wrapped up in a chubby, brown-haired little girl.
You can find all of the posts in the NICU Mom Series HERE.