He nodded quietly and said okay. Moments later he reappeared. I looked at him expecting a sad nod in the affirmative, that our little girl was gone. He didn’t do that.
He walked over and bent down beside me.
“Sarah, I talked to them. Ellis is still alive. In fact, they said her pulse ox is good. She is breathing well. Not only that, they said her heart rate is steady and so are all her vitals.”
I was stunned. What on earth was happening? They told me she didn’t have enough brain function to continue breathing. She had completely stopped even trying to breathe with her vent. Why was she breathing now? I didn’t know what was going on, but I assumed I would still be saying good-bye to my girl today. There was nothing more I could do in the moment, so we continued to rock.
Another long stretch of time seemed to pass, but it was just another hour. Again, I was waiting for her shift from this earth but not sensing it had happened. I sent my dad back out to the desk to check on her vitals once again. This time he came back in the room grinning as he announced to our entire room Ellis was still holding strong and improving each minute. A shift was now taking place in the room, but it was not with Ellis—it was with us. I watched as the worried faces of my friends and family started to relax into smiles. I was desperate for her to live but still not so sure she would.
“Lord,” I asked, “do I dare to hope?”
I wanted to. I wanted to believe the God of the miraculous was giving us a miracle for my Ellis. Yet, I had believed so many times in the past. Years and years of belief that came crashing down in a horrific ending. I wasn’t quite ready to believe again.
I continued to rock my girl as she slowly began to become more aware. Another cry from her pierced the air, then another, each one filling her lungs with breath again. I started to feel them now on my chest, small breath in and small breath out. She was doing it. She had stopped breathing on the machine, but she was doing it on her own. She had been on massive amounts of medications that still wouldn’t control her vitals, yet now without any medicines her body was controlling them on her own. She’d had endless amounts of seizures, yet once she was in my arms, they had completely stopped. It was as if my embrace was all she needed all along. It seemed impossible. It was impossible. Simply put, a miracle.
Time ticked on, hour after hour, and she wasn’t getting weaker—she was getting stronger. My dad would check in each hour, and it was incredible to be told the same thing: she was still alive. Four hours in, he left the room and came back with the doctor.
“Well,” she started in, “I don’t know what to say. She’s a fighter.”
I smiled. “Yes, she is.”
“At this point we don’t really know if she will pass or if she will live. We just don’t know,” she said.
She was perplexed. I could tell. We all were.
“We will keep an eye on you through the night, and if she continues on this road, we will release you into a room on the floor.” She didn’t say much more but didn’t need to. With each hour, what was happening was becoming clear. At the eleventh hour, when her life was all but gone, we were getting our miracle. My prayers were not hitting the ceiling but the very throne room of God. He heard. He answered.
Hope was rising and joy was exploding with each person in that room. We knew we were witnessing a miracle. As time moved forward, it became more concrete. Ellis Claire was going to live.
“I can’t believe it,” I said in tears over and over again. “I just can’t believe it.”
I wished Joel were here to witness this moment. Without his life there wouldn’t be an Ellis. His life was not healed on this earth, but in heaven he was whole. Yet his daughter’s life would be healed here, right before my eyes. Their names both meant the same thing—“Jehovah is God.” Their lives each declared that fact in uniquely different ways, both in life and death. Yes, miracles didn’t happen when I thought they would come, but they did happen when I no longer believed they could.
None of it made any sense, but in that moment, I didn’t need the answer to my whys. I just needed to hold on to my baby girl and soak in every moment.
We were now nine hours in, and my friends finally convinced me to eat something. Ellis was snuggled deeply into my chest, not moving an inch. The plan was to keep her that way until further notice. She was breathing resolutely, but she was still so delicate in my arms, limp from not moving a muscle for half her life. Friends and family were coming in and out of the room, wanting to get a peek at Ellis, not even believing the miracle that was unfolding right before their eyes.
Things started to wind down around 8:00 that evening, and after a long day, most everyone had gone. It was time to get some much-needed sleep on my trusty hospital futon. They propped me up with pillows all around, so I could sleep with her on my chest. It had been so long since my arms had held my baby girl; I never wanted to let her go. A mere nine hours prior I was telling her good-bye, yet now I was reacquainting myself with a life I thought I would never have the chance to know.
The next morning the doctor came to tell me that they were releasing us from the PICU and onto the regular floor. I asked for a wheelchair so I could continue to hold Ellis to my chest. By that time we were twenty-six hours in and I had not let her go, except for a single one-minute bathroom break. My request was granted, and before I knew it we were both being wheeled out of the unit that had been our home for two long weeks. Nurses gathered around to tell us good-bye, many with perplexed looks on their faces, not quite knowing how to respond to this baby girl.
Once we reached the floor, the transition was jarring. Ellis went from monitors continually keeping track of every vital sign to check-ins every four hours. Nurses who had been in and out of the room every few moments now had to be called into the room at our request. I realized I had left a cocoon of sorts, and the real work for me would now begin. I was scared—scared that I would do something wrong and hurt her, scared that I wouldn’t be able to take care of her, scared for what was in store and what her future held. This was all uncharted territory, not only for me but for the medical staff as well.
Yet as time moved forward, I couldn’t help but believe that the work the Lord had started would be finished. I only had my trusty mustard seed, but in the end, it was all I needed for mountains to move. I didn’t have all the answers as to how our future would play out, but I was growing more resolute each day as our new life together in the hospital passed.
Three days in I decided the time had finally come to release Ellis from my arms and let someone else hold her. I was in desperate need of a shower and felt like she was stable enough to let someone else hold her. Something told me that for the rest of her life letting go was going to be hard with her, but if there is one person I can trust with my daughter, it is the One who loves her even more than I.
That afternoon was filled with different pediatricians coming in to see her and developing a plan for when we went home. They were being cautiously optimistic, more comfortable with telling me all the things that could go wrong while I told them over and over again she would defy the odds.
She had her first chance to show off that afternoon. Since she was off her feeding tube, we had to discuss how she would get her nutrition. Doctors wanted to go ahead and put a feeding tube in her while I wanted to see if she would take a bottle. They told me to brace myself—that her being able to take a bottle was highly unlikely. According to the scans and the assumed damage to her brain, she likely wouldn’t have the skills required to do so. I was adamant they let her try. They sent in a speech pathologist, who came in to delicately walk us through the process.
“Now, we are going to give this a try,” she said. “Maybe we can get her to take a tiny bit, but we just won’t know until we try.”
My mom did the honor of holding the bottle up to Ellis’s lips and then putting it inside her mouth. I held my breath. Ellis began to suck away.
“Oh wow. Wow,” the pathologist said. “Whoa there, little one, slow dow
n.”
Ellis drank the bottle so quickly we had to stop her so her delicate tummy wouldn’t throw it all back up. They had told us previously if Ellis did live, there would likely be no way she would leave the hospital without a trach tube to help her breathe and a feeding tube to help her eat. It was now apparent she would leave with neither.
The next day was another long-awaited moment when Milo finally got to see his baby sister. He had fallen in love with her instantly the day she was born, only to have her and me suddenly disappear from his life for three weeks. I knew it had been hard on him, but I never wanted him to see her in that condition. There are some things a child should never see.
My parents brought him up to the hospital that evening, and he slowly walked in the room. His eyes locked in on me holding her, and a big smile spread across his face.
“Is that my baby sister?” he wondered aloud.
“Yes, buddy, it is,” I said.
“Are you feeding her a bottle?” he asked.
“I am. Isn’t that so neat that she can take a bottle?” I asked him.
He nodded enthusiastically, not even grasping a tenth of how amazing it was.
“Is she all better now?” he asked me in his sweet baby voice.
“Yes, bubs, Mommy and baby sister get to come home very soon because she is doing much, much better,” I said with a smile.
“I just think that she needed her Milo,” he replied confidently.
The room erupted in laughter as I ran my fingers through his hair and kissed his forehead.
“You know what? I think you’re right. I think her Milo is exactly what she needed,” I agreed.
I looked back and forth at my two children, who I never thought would be together again, and once again felt as if my heart would explode. I knew I was not only looking at one miracle but two. Two little ones entrusted to us, as the greatest gift I had ever received.
The following morning I removed Ellis’s little hat to check on her head swelling and noticed it had gone down by about 80 percent in only a few days’ time. Her brain swell, which had only gotten worse each day she was in the PICU, had now reversed and was going in the opposite direction. The miracle was continuing.
As the day went on, we started to have several visitors—only they were doctors and nurses from the PICU staff. Many of them had seen Ellis in her worst state. They knew what her scans said. They knew she shouldn’t be alive. They couldn’t believe what their eyes were seeing any more than we could.
“We just wanted to come by and take a quick peek at Ellis. Is that okay?” a couple of residents asked timidly.
“Of course,” I said.
“Wow, she looks like she is doing so well,” one of them said.
“She is, she is doing perfectly,” I responded.
“We heard she took a bottle. Is that true?” they asked.
“She did. She has been sucking them down like there’s no tomorrow,” I said.
They both shook their heads in unison.
“Aren’t you glad almost everything we told you was wrong?” one of them asked.
“You have no idea just how glad,” I answered with a smile.
We had now been on the main floor for five days and were set to be released in two. A palliative care doctor came in and went over everything I needed to know for our release the following morning. Out of an abundance of caution, they were sending us home with hospice care. It was not with the intention that she would die; it was more the intention that she needed an extra set of medical eyes watching over her as she first returned home. I listened as line by line the doctor told me the worst-case scenarios as to what to look out for in case things started to go terribly wrong.
“The goal would obviously be for Ellis to get strong enough to be discharged from hospice, but we just don’t know, you know, how things will turn out,” she told me.
“Well, I am hopeful,” I told her.
“You know Ellis is about a one in a million baby,” she said. “Her scans were…”—she paused—“incompatible with life.”
“I know she is,” I said in return. “Listen, Doctor, I don’t understand any of this any more than you do. But I know this: I know my baby girl is a miracle. And I don’t know what our future holds, but I have a strong feeling that this little girl is going to continue to astound,” I said.
She let out a slight smile, nodding slowly.
“I…I think that, too,” she finally relented.
The next morning the moment had come; it was time to go home. I hurried around the room, packing up all the things I had amassed over my nearly monthlong stay in the hospital. I changed Ellis into the first outfit she had worn in weeks and delicately loaded her up in her car seat. My mom arrived to collect all our things, taking them down to the car in multiple trips. The nurse came with all our prescriptions and permission to head out the door. Just as I had when we left the hospital after her birth, I placed Ellis in her car seat in my lap as my mom wheeled me out of the hospital. This seemed like a rebirth, a take two. Life had taken us to the darkest places, and by a miracle of the Lord, we got the chance to start over again. Not every family got to leave the children’s hospital with their child in their arms. Our life came incredibly close to that same outcome. That thought made me all the more thankful as I held Ellis close.
We loaded her up in her car seat as she wailed with her disapproval. At one point in life I would have maybe tried to quiet her, but now I loved to hear her scream. It meant she was alive, something I would never again take for granted.
As we pulled into the driveway, I looked at my house and was flooded with relief, excited to finally be home. We walked in the front door as Milo ran to tackle me, squealing with delight.
“Can I hold her?” he asked excitedly.
“Of course you can,” I told him.
By that point she had quieted down and finally faded off to sleep. I gingerly reached in to pull her out and put her on the pillow in her brother’s lap. He held her tenderly, looking at her face with wonderment.
Life had taken us to some incredible places. I thought back on the beginning of a journey that started with an “I do,” a promise of a forever love, which would remain a forever love. It had led us down the path of infertility, which handed us a loss, yet two joyous births. I thought about the day I told my husband good-bye, but how his life continues to inspire and direct our family to this day. I thought about the moment I let Ellis go, only to have her miraculously returned back to my life, to our life. Life—it is a funny thing, filled with much heartbreak, yet in this moment deep wells of joy, ashes to beauty and so much more.
“Mommy,” Milo said, interrupting my thoughts, “you’re home.”
“Yes, buddy, you are right.” I thought, If only he knew in more ways than one. “We are. We are home.”
EPILOGUE
Sarah, she is perfect,” the nurse said with a smile.
What every mom wants to hear. It had been three months since Ellis had been released from the hospital, and she was doing incredibly well. She had slowly been gaining the weight back she lost in the hospital and then some. She was now double the size that she was. The swelling in her head had completely gone away. After she got off the vent, she never again had another seizure. She had three different doctor’s appointments in the weeks prior, each doctor confirming her progress and what a miracle she continued to be. One even said she was “laughing in the face of medicine.” That’s my girl.
“Really?” I asked. “You really think she’s perfect?”
“Sarah, I see no signs at all of brain damage in this child,” she said. An amazing statement considering all Ellis had been through. “I think if you put her in a lineup with other babies her age, no one would know the difference.”
I looked down at Ellis in my arms as she smiled and cooed in approval. It was amazing how far she had come in such a short time.
“The only sad thing is we are going to have to work on getting her discharged,” she re
sponded.
Discharged. The words I had been waiting to hear. Ellis was doing so well she no longer needed hospice to monitor her.
“It came so quick,” I told the nurse. “It seems like just the other day was your first time you came to see her.”
“I know,” she responded. “She was so little and fragile. Now she seems like a completely different child. I am going to miss this little baby girl.”
“The doctor did say she is one in a million,” I said with a chuckle.
“One in a million?” she said. “I would say more like one in a hundred million.”
We both looked at Ellis and laughed at this little one who continued to astound.
I walked the nurse to the door and gave her a hug good-bye, promising to let her still stop by and see Ellis as she grew.
Just then Ellis let out a big yawn—it was time for her nap. I walked her back to her bedroom to put her in her crib, laying her right underneath the big sign that adorned her wall.
WHEN SHE WAKES, SHE WILL MOVE MOUNTAINS, it read.
I smiled as I watched her drift off to sleep, completely unaware of the mountains already bowing at her feet.
A few months later, I was in the guest room of a very special place packing my bag, with tears streaming down my face—only these were the good kind of tears. I had just spent the weekend at a retreat for ones who have walked through trauma and want to see their lives healed and whole. Oh, how I wanted to live a life healed and whole. This brief time away was the first step toward it.
The retreat was just what I needed—a weekend of remembering where I have been yet building hope again for my future. My first day there I noticed a painting on the wall, a beautiful, vibrant bouquet of flowers. I felt the Lord softly whisper to my heart, “I want to see you bloom again.” Bloom. Hope. Dream. All the things that were at the core of who I was, before tragedy came and momentarily took it all away.
From Depths We Rise Page 16