“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”
This post has been a very hard one for me to write. I’ve started and stopped the telling of this part of the story many times. It brings me back to a mental place that I didn’t want to return. I wish I could gloss over the painful memories of Eisley’s sickness and long hospital stay—or have the details fade away, at least for a time. If only I could do a memory dump and store the most excruciating thoughts in an offsite location. But it’s part of Eisley’s story and now part of mine. I hope in recounting the details of this part of the journey, I find some measure of closure to one of the most difficult chapters of my life. Despite the dark moments, I hope you will see courage and strength, love and light, and a spirit, though it may be bruised, that cannot be broken.
We were the first on the schedule for heart surgery for Dec. 28. However, we got a call the night before notifying us that we were behind a heart transplant, meaning there was a good chance the surgery would be delayed. We certainly understood having to postpone our surgery for a heart transplant, but because we didn’t know how long the wait would be, we stopped feedings and water much earlier than needed. This would be trying for any child, but for a food-insecure child it was torturous. Eisley’s security was found in a bottle of water that she clutched tightly at all times. It broke my heart to say no to her signs for “water” and “snack.” We delayed our arrival to the hospital knowing there would be nothing to do but walk around and attempt to pacify a hungry baby. I ended up pushing the stroller in laps around the hospital praying that Eisley would fall asleep until they were ready for us.
They called us to a holding room at 11:30 am and finally took Eisley back for surgery around
1:30 pm. Before they took her back, Eisley buried her head in my chest as if she were attempting to block out the world. The anesthesiologist gave her some “happy juice” to help her relax before they wheeled her down the hall. During the procedure, the surgeon placed a band around her pulmonary artery. He hoped she would grow into it and it could help bring down the pressures from her pulmonary hypertension. Hopefully in a few years, we could do more palliative surgeries to help her perfectly imperfect heart.
Dec. 28 – 31
Eisley came out of surgery looking great. Her vitals were stable and she was only on one medicine to keep her sedated. That stability was short-lived as she began to require a lot of medications to regulate her blood pressure. Her heart surgeon told me she was by far his sickest patient at that time and that she was on a downward spiral. Finally her blood pressure stabilized and they rolled the heart lung bypass machine away from her room. We hoped those were signs she was taking tiny steps in the right direction. I posted the following comment on our Facebook group on Dec. 30: “We are holding steady and taking small steps. With each hour that passes and every small step that is made, I exhale a little and whisper prayers of hallelujah.”
The New Year started with Eisley weaning down medications, doing CPAP trials to hopefully remove her breathing tube, and beginning feeds again. They extubated her for a time, but her breathing was so labored they had to reintubate. As the days wore on, we helplessly watched her abdominal area get bigger and bigger. Two weeks later, the surgeons determined she had developed necrotizing enterocolitis (NEC). That meant another round in the operating room in which they removed a portion of her colon and gave her a temporary ostomy bag. She later developed Drug Reaction with Eosinophilia and Systemic Symptoms Syndrome (DRESS) in reaction to one of her medications.
February was even more of a roller-coaster month for Eisley. I labeled her a “medical mystery” as her platelets continued to drop despite multiple transfusions, her bilirubin remained high (producing yellow tears), and her belly continued to get bigger. She made two more trips to the OR and one to the IR.
Feb. 5 was an especially harrowing day. When I got to her room that morning I was greeted by an attending doctor who asked me our plan if she went into cardiac arrest. Eisley was struggling to breathe, and the doctors thought she was in septic shock. I thought we would lose our beloved daughter that day … but our brave Eisley pulled through! After putting the drain on her gallbladder, the next day her color was better, her vitals were stable, her breathing was less labored, and she even opened her eyes! “She made it through the worst day she’s had thus far,” my sister said, “and I’m thankful for one more day with her.”
The doctors decided we needed to have a care meeting with all the specialists involved in her care to determine whether she needed surgery on her mitral valve—a very risky surgery that held no guarantees. Every time a different specialist walked in and said, “She’s a very sick little girl,” it was a verdict that was hard to swallow. I knew she was sick. I was under no illusions about her condition. But I wanted with all my heart for her to defy the odds. I wanted her to turn a corner and shock the pants off all these medical professionals. In a Facebook post that day, I reflected: “Today I am so very thankful to be here in this room, tears brimming in my eyes because my baby girl continues to fight and is fighting hard. I am so thankful for another day with her. Thankful for good reports on her. Thankful for small victories. Thankful for family and friends who continue to lift us up in prayer and support us in this long journey.”
At the care meeting, they decided to postpone any further heart surgeries for two weeks to see if Eisley’s body could begin to heal. I was so relieved about this decision. Shawn was going out of town for a work assignment for two weeks, and the thought of sending Eisley into a risky surgery while he was gone was almost more than I could bear. During those two weeks, she showed small signs of improvement. Her chest x-ray looked better, her platelets began to hold steady, and her bilirubin levels went down. There were a few other small victories as well. They were able to wean her completely off fentanyl, which was a huge step forward. She had been on it as long as I could remember and at times she was almost maxed out—to the point that one pharmacist thought the nurse had asked for the wrong dosage because surely a baby couldn’t be on that much!
On Valentine’s Day I posted the following comment to our Facebook group: “Good evening
to all! My heart has been on cloud 9 for a good part of this evening. I got to hold Eisley for an hour and a half. I haven’t held her in 40 days. It was the most wonderful Valentine’s gift I could have received.”
Later that week, I got a dreaded call from PCICU while I was at home with our big girl and Shawn was still out of town. They had to give Eisley chest compressions due to a mucous plug. I worried what implications that might have on her fragile body. Our next worry was that the doctors and nurses had some concerns that Eisley was having seizures, so they consulted neurology and ordered an EEG. Thankfully, the EEG showed no indication of seizures! I had joked many weeks earlier that Eisley demanded a lot of attention and wanted to see all the various service groups at the hospital. After neurology was called in, I told the nurse to go ahead and call nephrology so we could check that department off our list. Five minutes later a guy walks in and says, “Hi! I’m the kidney doctor.” He was called in to see if he could find a correlation between her low sodium, calcium, and potassium levels. (Personally, I think Eisley was just missing her chips and guacamole.)
Later in the month, Eisley’s SATs continued to drop randomly, she struggled with blood pressure issues, her gallbladder showed signs of inflammation, she suffered through drug withdrawals and delirium, and there was initial concern of a possible brain bleed. Despite all of this, I posted this comment one evening: “I’ve decided whatever will happen will happen and am going to trust God through this.”
Thankfully, a CT scan showed no indication of a brain bleed. However, we heard more disappointing news. Eisley’s labs and her lungs looked worse, and the word “septic” was tossed around again. They called in the hematology and immunology departments to get involved as well.
Her cardiologist was baffled by her case. He said he’s never seen a child survive fungemia (fungal infection in the blood) and viremia (viral infection in the blood) before. To be honest, there was no medical explanation for why she was still alive. During this time, she also contracted many infections including herpes simplex virus, CMV, aspergillus, histoplasmosis, pneumonia, and thrombocytopenia multiple organ failure (TAMOF). They performed a test to assess her heart function, and as my brother, Nathan, described it, “Her little-big heart has diminished in function.” The doctors said there was a 10 percent chance that she would pull through. And yet, we clung to that chance. As long as she still had a fight in her, we would be by her side cheering her on and loving every minute we had with her. As I wrote on a Facebook post during that time: “Despite all the tubes, wires, incisions & sores, when I hold Eisley all is right with the world and time stands still. Be still my heart, beautiful girl.”
Even with all the bad news, I was determined to celebrate her second birthday on March 8,
which we did in grand style. But two days later, I was afraid we were going to lose her again. I ask the doctors to do what they could to help her pull through. March 10 was a special day for her big sister because it was her Forever Family Day. I didn’t want that day to be split between one of our family’s happiest events and one of our saddest events. In true Eisley fashion, she held on.
On the evening of March 11, we read her Good Night Moon for one last time. We spent the evening and the wee hours of the morning holding her, singing to her, and just loving our baby girl. For so long I had been praying that she would survive and turn a corner and become even more of a medical miracle. However, that night, I prayed the pain would be taken away and that the suffering would end. I whispered in her ear, “You fought the good fight. You were braver than anyone I’ve met. You held on for so long. You have suffered enough. Now it’s time to let go. Fly high little one. You are loved more than you’ll ever know.” She took her last breath in my arms, free of the breathing tube, which had supported her for so long.
Eisley had a strong spirit and fought so valiantly. It’s funny to remember that in the early days of her hospital stay I worried that her feisty spirit would interfere with her recovery. But this fieriness actually kept her going far longer than anyone would have guessed. In the end, the part of her body I thought was the weakest—her heart—was actually one of the last things to fail.
No one ever wants to say goodbye to his or her child. It isn’t something a parent should face. Perhaps rather than goodbye, we’ll consider our parting, “Until we see you again, beautiful girl.”
“Only in the agony of parting do we look into the depths of love.”
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