When All I Could do Was Surrender
The lesson I had to learn in real time, in a hospital room, over the course of 24 days
I know what I need to do. But first, I just need to sit here. Be still. And feel my feelings.
It is Monday. Everyone hates Mondays, but not me. I love the routine of a beginning, middle, and end and as far as weeks go, Mondays are a fresh start. Mondays we have no in home therapies, but today we have a monthly meeting with case managers and foster care workers and I am a little nervous, as I always am for these things. Ella (the artist formerly known as Alexandra) has been out of the hospital for six days now, and it is so good to all be home. She cracks me up with the way she’s starting to shake her head no at everything I ask and give tiny, slow, high fives with her chubby little palms. Eight months old is a fun age.
Her hospital stay was eleven days long but felt oh so much longer. I probably shouldn’t have stayed the whole entire time, in her room, at her side. I wanted to bond with her though. I wanted to be there for her. It was her first illness since she’s been my daughter and I needed her to see that I would always be there. Thank God my husband was able to take a few days off work and adjust his schedule to be home with our other four kiddos. I missed them so much. I worried that they might feel like they gained a sister but lost a mom, because her care is so intensive. We video chatted daily and the older two, our teenagers, Evelyn and Thomas, texted back and forth with me frequently. Being in the hospital almost felt like a vacation, to be honest. No laundry, no dishes, no meetings or cleaning or worrying about anything but being with Isabella (Ella for short).
So now that we were finally all home and had a new fresh week ahead of us, I thought it would be nice to make a nice dinner in the crockpot so I’d have time to take the kids to the park after school. We don’t really take Ella many places, for fear that she will get sick, as she does so easily, having been born 10 weeks early and addicted to drugs. She has chronic lung disease, and the last thing we need is for her to end up back in the hospital with another cold. What is an inconvenience to others is a week in the hospital for her and it’s just not worth it. So, the park. We can all get some fresh air before it’s too hot to enjoy being outside in Arizona (which is most of the year, to be quite honest). We pick up the kids from school, fill up our water bottles, grab snacks and bubbles and a soccer ball, and we’re off. We have our pulse ox machine, our feeding pump, our oxygen just in case and Ella’s suction machine. Nothing is quick these days, but it’s all worth it.
Ella and I sit in the grass, her in my lap, watching the boys kick a ball and Evelyn look for bugs. We video chat with Grandma GG, take a few pictures and just curl our fingers in the soft green grass. Ella looks happy. She is smiling and squinting into the sun as she is investigating the pillowy green carpet underneath her. It’s a perfect day.
After bed that night, I tuck everyone in and decide to take a relaxing bath. I place Ella in her crib, turn on her apnea monitor, set up her night time feeding, switch on her oxygen compressor, check her pulse ox machine, and fill the water chamber of her heated aerosol collar. She rolls onto her side and sucks her thumb, such a precious girl. I take her monitor with me, the ten feet into the bathroom and watch her sleep while I relax in the bath. I finally drag myself out of the tub and crawl into bed about eleven. I drift off to sleep, feeling cozy and happy and so grateful for my life.
I awake less than an hour later to Ella’s pulse ox machine alarming, as it usually does, whenever she figures out how to pull off the sensor or moves too much in her sleep. I blink hard as I look at the numbers on her machine that are clearly wrong, half of what they should be. I check her little foot and the sensor is in place, so I restart the machine quietly so the rhythmic beeping doesn’t wake her. It is rebooting when her apnea monitor begins blaring it’s loud, haunting, wail. It is like a fire alarm and when this one has a false alarm, it always makes me jump out of my skin. It is flashing a red light and a heart icon. The pulse ox starts blaring again. I suddenly snap to, and realize for the first time that, oh my God, something might be wrong. I lift her up into my arms and her head flops backwards, exposing her trach. She is completely limp. I cradle her in my arms and she lets out a loud, raspy, exhale. “Ella, Ella?” I start praying immediately, fiercely, incoherently as I feel the panic begin to set in. The tingling reaching from my heels up my spine and tickling the top of my head. I spin towards my phone that sits just out of reach on my nightstand, as I am tangling myself in all of her cords. I uncoil myself and reach it and dial 911. I blurt out our address and plead for help as the woman on the other end asks me what my emergency is. To be honest, at that moment, I didn’t even know. I was so confused and bewildered. I explained the situation chaotically, speaking too quickly. She told me to set Ella down and begin doing chest compressions. I told her that the front door was locked downstairs and she instructed me to have someone let the paramedics in. I was the only adult at home. I began yelling down the stairs to my teenage son who was sleeping on the couch, but he couldn’t hear me. I, calmly as I could, burst into my older daughter, Evelyn’s room, and told her that her sister was having trouble and she needed to go downstairs and let the EMT’s in, but not to be afraid. “Good job,” said the woman on the other end of the phone. I headed back to my youngest, lying helpless on my bedroom floor. I turned on my bedroom light and saw that her color wasn’t good. “Now start pumping her chest with your middle and pointer fingers, nice firm pressure.” I didn’t think, I just did it. I counted out loud with her “one, two, three, four, five, six, seven, eight, nine, ten.” Pause. “Again.” “Come on baby, come on baby girl,” I sobbed between counts. “One, two, three…please hurry”, I gasped, “She’s turning blue. She’s turning so blue!” I heard myself scream. My oldest son, Thomas came into the room. He looked afraid, but he sat on the bed next to me and cheered me on. “It’s okay Mom, it’s okay. She’s going to be okay.” “Six, seven, eight. Call Daddy, someone call Daddy right now!” “You are doing great, don’t stop,” coached the angel in my ear. “The paramedics are on your street, they’re almost there. Just keep going. You are doing great. They’ll be there any minute.” A sea of navy blue uniforms and concerned looks filed into my bedroom. They flooded the space with their equipment and took over doing chest compressions as I just backed up and sat on my bed in slow motion. From then on, it felt like the movie had paused and I was no longer in it, I was sitting, watching it all happen. I could see everything, but I could feel nothing. I was watching from somewhere far away. They cut off her pajamas. I stared on. They talked in hushed, fretful voices, as they did chest compressions. I stared on. They looked anxiously back and forth at each other, no one acknowledging that I was in the room, as they detached her from her machines. I stared on. They raced all around me, doing God knows what, I wasn’t there anymore. I was somewhere safe.
“Ma’am, we are trying to decide which hospital is closest,” they said. We are at least thirty minutes from the nearest hospital. The children’s hospital is an hour away. Luckily, it is very early on a Tuesday morning and traffic shouldn’t be a factor. Evelyn comes in with Daddy on the phone. He is confused as to why they are talking about taking her to Chandler Regional Hospital, they don’t have a children’s department, and the last time she had trouble breathing we took her in ourselves. I take the phone and tell him, “She just has to get somewhere, anywhere, right now. I need you to go and meet them.” Now he understands what I am really saying. He goes. I stay. I am in a daze. I am aware that I am crying hysterically. I am trying to keep it together. I am okay. I am okay. I am okay. I am not okay.
They take her away on a stretcher. I hear someone call for the captain from downstairs. The man in charge looks me in the eye and asks if I will be okay here. I tell him I have four other children here right now, and I have to be okay. He says the words that haunt me still: “I don’t know how this will turn out, but we will do everything in our power.”
My children are on the phone, calling local friends to see if someone can come stay with them or come check on me. My phone buzzes. It’s a text from my best friend of a decade, Allie. Bestie, Evelyn just tried to call me, was that an accident, just checking. I call her. She answers and I’m too inconsolable to speak. “Bestie? Are we crying or laughing?” I try to make the words come out. “Is something really funny, are you okay?” I can hear the hope in her voice that it’s nothing. And then the words come spilling out, in a guttural wail, a sound i have only made twice now in my life. “The baby,” I gasp, more syllables than it should take. “The baby. They took her. In an ambulance, she wasn’t breathing. They took her. I had to do chest compressions. I don’t know if she’s okay. I need you.” It was more sounds than words. It was more plea than request. She was there within forty minutes. I was wrapped in a blanket, with my oldest two children, on the couch. I couldn’t be in my bedroom anymore. It is haunted now. Thank God and for His mercy, that my eight year old boys slept, blissfully unaware, in their room upstairs, never knowing the trauma going on outside their door.
Allie held me all night. She held me while we waited for hours to hear if Ella was okay. She held me when Jake called to tell me Ella was finally stable. He had seen her in full code, bleeding from her tracheostomy site, lifeless and tiny. She held me when he said they would be taking her by helicopter to the children’s hospital. She held me for hours. She will never ever know what that meant to me. She was my mother, my caregiver, my best friend, my sister, my hero. She fed my children and kept things calm, while I tried to sleep. I longed to sleep, to escape this nightmare. I would close my eyes and the terrifying movie would play over and over. I would wake shaking my head, sobbing to myself. Jake would call intermittently, nothing new to report, just checking in. She was stable. I didn’t really know or imagine what that meant, I just knew she was still alive and that’s all I needed to know.
I honestly can’t tell you who stayed at my house that night with my other four children, because that day is such a blur to me. I know that Jake and I drove to the hospital to see our girl and that just being back at the hospital felt frightening and disheartening. I couldn’t wait to get up to her room and just hold her. I could love her back to health.
We rode the elevator in silence. As we stepped off, the first room we came upon as we went through the double doors looked intense, I felt instantly grateful then guilty that our Ella wasn’t as bad off as the child in that room. It was her room. I don’t know what I was expecting to find, but this wasn’t it. It took my breath away.
Ella, head wrapped in bandages, a huge nest of wires behind her. Face and body so swollen, eyelids swollen shut. More tubes and cords and IV’s coming out of every part of her body, one even sewn into her chunky little thigh. Her arms and legs moved rhythmically inward to the beat of an imaginary song, one that must never be sung. She was seizing, repeatedly.
What is happening? Is it really this serious? What happened? I don’t understand. Is she okay? Why did this happen and what caused it? The questions abounded in my brain and rendered me silent and the tears flowed. The nurse walked past me to administer more medicine. There was a machine showing her brain waves to my left. It was too much. It was just too much. I begged Jake to stay there with me that night and he did. Me on the couch and him in the chair, holding hands.
My daughter was not alive for sixteen minutes. She slipped through the paramedics’ fingers on the drive to the hospital. They worked tirelessly to bring her back. They realized at some point that her trach had become dislodged and that they were pumping oxygen onto her neck, not into her trachea. Jake told me this before we got to the hospital. All I could think of was… my daughter died today. My daughter died today. It is not a sentence a parent ever thinks they will have cause to say. But, my daughter died today. I could see that she was still alive, lying so helplessly in the hospital crib. But she wasn’t breathing. A ventilator was doing most of the breathing for her. Her heart was beating, so that was good, but it was racing. Her brain was active, but with near constant seizure activity. A doctor came by and casually and carelessly told us that all of this hell was because her trach came dislodged. This likely happened when I picked her up at home last night in her crib to check on her, and her head flopped backwards. I did this. It’s all my fault. It’s not what she said, but it is what I heard. It brought me to my knees, and I may never get back up.
Facebook Update, Day 2
We’re hanging in there. It’s an emotional roller coaster of hope, fear, relief, guilt… While Ella’s heart and lungs are doing great, neurologically she is having a lot of issues, especially seizures from being without oxygen. Once she’s seizure free for a few days we can get an MRI done to have a better sense of what parts of her brain have been damaged. She’s swollen and has tubes and wires everywhere. Trying to find the positives and hold to hope but be realistic as well… Our God is a God of miracles, we need to remember that. The view out our hospital room window of the word HOPE on the roof of the building across the street is a nice reminder.
Everyone assured me that it wasn’t my fault, that even the paramedics didn’t notice that the tip of her trach had come out and was tucked under her trach ties. But they aren’t her Mama. They didn’t pray her into existence and promise to love and protect her everyday for the rest of their lives. Guilt is a crushing weight for a soul to bare. Shame burns hotter than fire. Regret is more bitter than any poison. I felt dead inside.
The next few days were a blur of guilt, specialists, deliriousness, text messages and tears. She might not make it. It was a real possibility. I couldn’t smile. My face was too heavy to hold a smile. I remembered that Allie had bought her the most beautiful little Easter dress, to wear in a few weeks, and now it may be her burial dress. The irony wasn’t lost on me. I was worried sick that if she passed away, before we could officially adopt her, would we have any say in any of it? She’s our baby girl, no matter who her legal guardian is. Will she get to be Isabella Andrews? Will we be a family in Heaven still? Will she die as Alexandra, an orphan?
The doctors all came to the conclusion that Ella had gotten a mucous plug that night, and that is what caused her oxygen level to drop so low and caused her heart rate to plummet. The trach coming dislodged was what sealed the deal, and it was still my fault, in my mind, because if it hadn’t been for that, maybe we could have just suctioned her really well? I don’t know. We may never know. People keep telling me how brave I am. But I certainly don’t feel brave. My husband tried to call me a hero once. It literally made me feel ill. I didn’t save her. I was the weapon that hurt her in the first place.
Fever set in and continued to rise. They tucked ice packs all around her until she shivered in her sleep. Her skin, icy but her core temperature rising. They tried everything to get the seizures to stop. There was one last medication; pentobarbital. This would put Ella into a chemical coma, one they hoped would reset her brain and force it to stop seizing. It was just she and I when they did it. They said I could have a minute alone with her before they administered it, but that seemed macabre. She was already sleeping, nothing would be different. They emptied the syringe. I sat down and called my husband. I craved the sound of his voice, he can always keep me calm. I heard an alarm outside the room and saw people running down the hall. I walked to the door to see what the commotion was. Then I heard the sound. I can’t stop hearing it still. It was the sound of a parent who just lost their child. Across the hall, someone’s little boy had just lost his battle, unexpectedly. The wailing continued as more and more family came and saw and heard. I hid on the phone with Jake, in the lowest, smallest, farthest corner of the room that I could find. It was psychological torture to hear their grief, to know it could be our grief, our family any time now. It seemed never-ending before the mourners were ushered to a private room.
I wanted to escape. I felt like I was in one of those movies where the protagonist is running for her life, trying to escape the villain and her legs are flying and trees are soaring passed her and she stops short, just in time to see the edge of the cliff and watch rocks tumble forward. She looks back and the monster is in full pursuit, almost there. She has a choice to make, she can take a chance and leap forward to brave the rocky, icy, river below or she can turn around, stand tall and take the punishment that the monster is sure to deliver. Trust me, I wanted to jump. I wanted to feel some sense of control in this whole stupid gut-wrenching situation. But instead, I surrendered. Not to the monster, but to God’s will. I decided in that moment that I was going to be okay, even if she didn’t make it, even if this was it. I would sit here and enjoy her while I could and I would survive this too.
I asked one of Ella’s doctors to come talk with me a moment. I asked her to be honest, and tell me if I was going to be the family across the hall, and no one wanted to tell me yet. She assured me that at this point, it was no longer a will she or won’t she live type of situation, it seemed more like a question of what amount of brain activity she would recover when she did survive. Any version of my daughter that I get to bring home, is one that I want, I told her. I love her.
And just like that, as my perspective and attitude and desire to control the outcome shifted, so did Ella’s prognosis. She was breathing over the ventilator, she stopped seizing and she was able to get her MRI done. This would tell us which parts of her brain were afflicted by the lack of oxygen and how much damage was caused, to give us a rough idea of what the future would hold. Phrases like “quality of life” started to be used and while that turned my stomach, making plans for the future and not for a funeral gave me hope.
I decided to go home for the weekend and trade places with my husband. I dropped the big kids off with their friends at the mall while I took the little kids out to lunch with Allie and then to a movie. As we were heading into the restaurant, I got a call from Jake. He said the preliminary results of the MRI had come back. I braced myself for what would come next, thinking, “How bad?” There was no significant new brain damage on the scan. NO NEW BRAIN DAMAGE? In that moment, I was literally dumbfounded. I hadn’t really thought that was even a possibility! Praise God! I enjoyed that lunch with my boys and my best friend, with the most genuinely grateful feeling of love my heart has ever known. I couldn’t wait to tell the world. I even blurted it out to our waitress, who almost cried, she was so happy for us too. I knew then that someday we would look back on this season and wonder how we did it. But when we are looking back, it won’t be scary anymore, because it will be a memory of a miracle.
While driving with Evelyn later that same weekend, I had my first bout of flashbacks. I was heading down the road that leads to home when a fire truck barrelled past us, lights flashing and alarms sounding, and I was right back there again. I was in my room, on that night, the feelings were the same only the backdrop was different. I gripped the steering wheel with all my might. I started mumbling, “Ella is okay, Ella is okay now. Ella is okay.” It quickly became a yell, a shriek, a desperate question. “Ella is okay? This isn’t real, right?” And I cried. I was haunted. It felt so real and then I was back, and I was okay. I’d like to say that was the only time it happened, but it wasn’t and I won’t lie to you.
Being at home while Ella was still in the hospital became a great source of anxiety and stress to me. I was so happy to see my other children, but I had this innate, unquenchable, need to see Ella and to know she was okay. I would video chat with Jake constantly just to have him lay the phone next to her in bed so I could see that she was alright. Eventually, I did talk to a trauma counselor on staff at the hospital. He explained to me that PTSD is the brain’s way of making sure we don’t forget when something really dangerous or traumatic happens so we can protect ourselves by making sure it never happens again. He explained that my reactions were normal and suggested maybe going home to someplace else at first, transition slowly home. I didn’t feel like that was an option for me, but Jake had the great idea of rearranging our bedroom, to make it feel like somewhere new. I ordered new bedding too, just to give it a different feel. It would still be weeks before I could sleep there again, but it was a start.
Within a few days the pentobarbital began to wear off and Ella’s eyelids started to flutter. It would still be a few more days before she would open her eyes, and the waiting was intense! It was exciting and scary and again, a test of patience and surrender. There was some peaking, yawning, stretching, a little bit of wiggling. They began weaning her off of the ventilator and she did it like a champ. She is amazing! When she finally awoke, she was still very out of it and seemed hazy. She got the electrodes off of her head and many of the tubes and IV’s removed. I was able to hold her, to really hold her. That gentle, motherly, touch was so needed for both of us. It helped wash the stain of the chest compressions off of my hands. It made us both feel safe. We spent the next few days snuggling in a recliner next to her hospital bed. We just needed each other. Our time together was so rehabilitating and special to me. Thank God for the friends and family that came to our rescue to help with food and childcare and prayers and visits, so Ella and I could heal.
We quickly noticed though, that Ella was different than she had been before. Her movements were extremely spastic and her muscles rigid. She didn’t smile anymore. We soon realized that she had very likely lost her ability to see. She didn’t track anymore, make eye contact, react to light or reach for toys, not that her muscles or level of coordination would have allowed her to. She also began having withdrawals from being so heavily medicated the week prior. She would have muscle tremors, diarrhea, vomiting, and extreme agitation. It was nearly impossible to comfort her for a few days. She was either asleep or crying. I just kept thinking about how unfair it was to her. And the guilt rose up. I added these new insults to my mental list of things that were my fault.
It occured to me that having a child, no matter how they come to be ours, is a lot like getting married. We promise to love them, protect them, cherish them, for life. No questions asked. But with a child, you don’t even have the trial period of dating first. You just jump in with both feet and say, “You, I want you. I am on your team and I want you on mine.”
Once she was off the vent and constant EEG monitoring, we were moved from the ICU to the general floor. The nurses there all seemed to know our little celebrity patient, as she had been there so many times before. Jake and I continued to take turns staying with Ella, so I could transition back to being at home and daily life. She was doing so very well that they began talking about discharging us after the weekend! Our goal was for her to be able to tolerate being off of oxygen during the day.
Facebook Update, day 22:
Ella didn’t get to come home today after all. She had an elevated white blood cell count yesterday and they don’t know why. She tested negative for infection and viruses on a nose swab today. They will take blood again tomorrow. She will come home maybe tomorrow or the day after.
It was Daddy’s turn with baby girl today. They had some good naps and snuggles. While I am a little jealous, I must say, it was a very productive day at home getting things ready for her. And any day I get to spend with my other four sweethearts is really a day well spent.
But in all honesty, I am not okay today, and that’s okay. Multiple anxiety attacks, lots of tears and frustration. I know it is just a season and that it will pass before we know it, and this season will be nothing more than a memory, a battle scar. But from right here in the midst of the down pour, I’m feeling weary.
I know full well that God is my refuge and my strength. I know He is by my side and that He is for me. I need to cling to that when I start to feel hopeless or lost or when I start to turn on myself. Let’s see what tomorrow brings.
The week we were scheduled to leave, a resident doctor came by to find out if I had any questions or needed any additional supports in place before we could be discharged. I told him that my only big concern at this point was how to make sure nothing like this ever happened again. He looked me right in the eye and jokingly said, “all you can do is brush up on your CPR.” I thanked him tersely and walked out of the room, feeling like I had been gut punched. There’s no way he knew that I was the one who did CPR and that I felt responsible for her near death experience. Right? I’m sure he was just talking to talk, trying to be funny, but it hurt, nonetheless. I cried, I vented and I got over it. He wasn’t the first medical professional to be insensitive and I’m sure he won’t be the last either.
We were supposed to go home on Tuesday, that was the plan. I was ready. Jake had taken a few days off so he’d be there the first few nights to help me at bedtime, since we anticipated a certain level of anxiety. Instead Ella had some blood work come back with startlingly low numbers that indicated she could need a blood transfusion. After worrying about it all day, it turned out to be nothing. Though, they were concerned she may be getting an infection in her trach. We started antibiotics and resumed discharge planning. Since being in the hospital, she had a few medication changes and the addition of a bipap machine at night. By end of day Tuesday, the insurance company still had not approved the request from the hospital for the medical supply company to deliver our new machine. It took two frustrating days to get it all sorted out, and I was mad. I had been so patient and understanding and calm since we’d been there and I was done. I was ready to go home. Each day we spent at the hospital was a day we wouldn’t have at home as a family to readjust. My anxiety was soaring. My tears were coming out hot. I asked the nurse if we could close the drapes on the fishbowl of a hospital room so that I could have a quiet moment to cry. Within five minutes, several different people came by to do therapy, clean the room and check on Ella. I called my mom. I cried to her. I vented. I didn’t care who heard. I felt better. I had promised the counselor that I would eat, so I ordered lunch up the room and tried to just chill out and not freak out instead.
Finally, on Friday, two hours and three days after expected, the bipap machine was delivered…to our house, instead of the hospital, an hour away. We were not allowed to leave the hospital until we had been trained on how to use it. I could scream. In the end, they made an exception. But then a storm blew through, shutting down the one road that leads from our town to the hospital, for hours. Against all odds, Jake made it to the hospital at seven o’clock, my knight in shining dusty Envoy. It was an emotional ride home. I was beyond grateful for the care our family had received from the hospital, so excited and relieved to be heading home and so scared to death that I would never, ever, feel like I could keep Ella safe again. If my choice was to watch the back of my eyelids or stay up all night listening for her alarms, and making sure she was still breathing, I would never sleep again.
In the blink of an eye everything can change. People always say it, but it really is true. So I am going to live in the moment from now on, even if it means living outside of my comfort zone. I learned a lot during those 24 days. The first thing is that the world doesn’t stop just because of my broken heart. It spins on. The sun sets and rises again, and still I grieve. I dread. I hope. I persevere. How many others are feeling that way and I haven’t noticed? This experience made me softer, kinder, more aware. I also learned that I am not in control. I always knew it, in an invisible sort of unspoken way but now, it is very visible, it is very deafening.
The most profound thing I have learned through all of this was the act of surrender. I was only holding imaginary reins anyway; God has always been the one in control. There is something terrifying and yet beautiful about that realization. There is something so freeing about letting go of the weight of the world and the outcome of everything, and just trusting that life will turn out okay, no matter what comes next. It will take time for the physical ailments and emotional scars to heal, but as long as we have each other, I know it will always be okay.
I feel like my Isabella is a living love letter from God. I had to be willing to trust Him, before He answered my prayer. We are trained to live our lives with a “seeing is believing” mentality, but I learned that believing is seeing. Sometimes we have to take the first step down into the basement of the unknown, even if it’s dark and scary, and we can’t see that next stair.
