How do you pack love into 24 hours? Enough love to last a life time? It’s totally, 100% impossible. Every moment seems like hours and yet passes in a breathe.
Knowing that Kierra likely wouldn’t get better was horrible. Watching her die brought on a whole new meaning of unbearable.
The crazy thing about it was the peace and strength that held us up when our hearts and lives were totally falling apart. I know, without a shadow of a doubt, that the same strong arms that are holding Kierra are the same ones that held us together that last day and also the ones that are holding us now. Even when the coldness creeps into your heart and seeps into all the tiny cracks and you think you will never be warm again. Jesus, our Creator, is still there. Forever and always.
I really have no idea what to write about that last day because it all blurs together in my mind. I am so thankful we had it though. That we could hug our darling and kiss her and tell her she didn’t have to be afraid and that Jesus was waiting for her. My family got to come see her one last time, and friends that meant the world to her came and gave her sweet little face one last kiss.
On Tuesday when I took her to the ER, I was expecting to have a belly X-ray done to check the placement of her feeding tube. She was breathing very rapidly, but she has done that before, so I wasn’t overly concerned about it. I still can barely wrap my mind around why this time, she got so bad. so fast.
The ER doctors ordered a Vaportherm for her. She’s been on this before. It is a higher, more forceful, vaporized flow of oxygen. After being on that for a few hours, she seemed more comfortable, but was still breathing as rapidly as ever, around 80 breathes a minute. (yep, that IS super fast!) They tried several times to get an IV in, but her veins always blew for them. Finally, a nurse from PICU came down, and with an ultrasound machine, she found a vein, and inserted a line. We were SO thankful! However, it was a very temporary vein, and had the risk of blowing at any time.
In order to get her breathing stabilized, the Respiratory Therapist tried putting her on a CPAP machine. This is an oxygen type mask that goes over the mouth and nose to provide additional oxygen flow and ‘umph’. She absolutely HATED it and would under no circumstances tolerate it.
You know your child is critically ill when your room is suddenly teaming with Doctors from all over the hospital and medical personnel and your ears begin to ring and the room gets stifling hot and you grab hold of the last shreds of your mind power that remains and tell yourself firmly, “GET HOLD OF YOURSELF.”
All I had to do was take one look at the Doctor’s faces to see the fine tension lining them. When Kierra’s kidney Doctor that we have known since we began her care in Delaware, stepped into the room I saw a new sadness around his eyes. There were actually TWO kidney Doctors there. Both wonderful caring physicians who have been so supportive and helpful. My mind felt like it was about 10 leaps behind what my eyes were seeing. I was seeing reality in their faces, but my heart and mind were still way back the road,stuck at the yellow light of ‘she is just a bit sick’.
That red light was actually flashing steadily. I just wasn’t ready to admit it yet.
The Critical Care Doctors took over and Kierra was rapidly whisked up to ICU. I still honestly had no clue how bad she was. Steve had tried calling me in the middle of the hubbub and I wasn’t really making much sense to him and told him I would call him back later.
Kierra LOVED the ride up to PICU. Arms thrown wide out, little head turning happily from side to side, she was thrilled with the whoosh of air over her face. No one was messing with her face or poking needles into her arms and feet.She didn’t care that she was causing alot of rapidly flying hands and feet. She was a little Princess, snuggly with her pink blanket, having the ride of her life.
I even attempted a little joke about it. The hospital staff glanced at me sideways. They most likely thought i was one loco mommy. :)
When we got to the quiet of the ICU room, the Attending Critical Care Doctor took one look at her and shook his head. He said he has seen this before. When children this young are working this hard to breathe, they literally wear out. She may last for two hours. Or overnight at the most.
Six hours after her first x-ray, a repeat x-ray showed a total haziness over her lungs compared to a bit of haziness at the bottom of her lungs. The infection was spreading at a deadly rate.
We had a really tough choice to make. If we wanted to give her a chance of survival, we had to move fast. I left the room to give Steve a call. I tried hard to hold myself together. To at least make sense, but my mind was spinning so fast, and that awful ringing was echoing in my head again. Steve hadn’t been planning to come down for the night, but those plans changed really fast! I asked him if the Doctor could please talk to him, since I wasn’t sure how accurately I could tell him what was wrong.
The Doctor, a social worker, and I made a conference call to him in a small family room. It helped to hear it all repeated, slowly, in comprehensive language. The Doctor did an amazing job of being clear and concise and not wasting words. We had two options. keep her as comfy as possible, and expect her to likely pass away by morning, or insert a more stable central line into a main artery and give her a chance to fight the infection. They made it very clear that she likely would not make it even with a central line, but by having that line, they would have much better access in giving her antibiotics, pain meds, and blood draws. In order to put the line in, she would need to be sedated. In order to safely do this procedure, she would need to be intubated. ( put on life support) They also warned us there was a very good chance she would not be able to successfully come off the life support. Her lungs may never recover sufficiently to breathe on their own again.
The social worker was so wonderfully supportive and kept telling me she would be here with us to support us no matter what happens. Once again, my brain was screaming at her “Nothing is GOING to happen! You don’t know Kierra. She is a FIGHTER!” But my face just tried to smile and said “Thankyou!” because reality was staring me in the eyes.
We decided to put the central line in, and give her about 24 hours , then remove the breathing tube. That central line sounded very attractive to us. We didn’t want her to have to suffer, and since her IV line was so precarious, we didn’t want to risk the chance of having no access to her for pain medication. I was DONE with having her poked and pricked. I was not having it ONE MORE TIME anytime soon. With a central line, we were hoping to give her the best level of comfort possible.
The Doctors set the wheels in motion. I cried a bit on Carolyn’s shoulder and told her she could take our van home. Steve was on his way down, and I had alot of ugly, hard calls to make. I wasn’t even sure I could hold it together enough to make any sense on the phone. I imagined how this news would ‘ruin’ so many peoples nights, and I felt sorry for that too. I wished I could just crawl into bed with Kierra and make this all go away.
I never did muster the courage to call my family. I think God knew I needed a call from them. My sister, Karen called to see how Kierra was doing, and I broke the hard news to her with much more calmness then I dreamed possible.
Steve finally arrived and we walked down the hallway to Kierra’s room together. She was resting so peacefully, her breathing regulated by the breathing machine. She looked so comfortable and relaxed and I immediately noticed her cute little nose that had been covered with an oxygen canula for so long. Even with all the tape and the tube in her mouth, she looked absolutely darling adorable to me.
That night, Steve and I took turns staying with her. We tried to get a bit of rest because we had no idea what was coming the next day. She kept trying very hard to wake up and they had to give her sedatives often to keep her calm and comfortable. She would squeeze our fingers, and even open her eyes and gaze around. I snuggled up as close to her as I could for awhile and she rested well. As soon as I sat up, she started thrashing around, and fighting her tube. She was still very much aware of what was going on around her!
Dads. Joe and Mona, Jason and Karen, and Warren and Dorcas all came up the next day. It was a very tough, emotional, precious day. We sang her favorite “Twinkle Twinkle Little Star”.
A repeat x-ray did not show much improvement. We had a conference with Kierra’s medical team around lunch time. There was little chance of her recovering. We knew God could still heal her if He chose to, but we didn’t want to keep her on the breathing tube as life support. Now that we had a central line, we felt we needed to remove the tube. We decided to do it around 7PM. That would give Kobe and anyone else time to come to the hospital to say Goodbye. Steve and I took a little break after the meeting and tried to grasp the reality we were facing. We were strangely both starving hungry. So hungry we were light headed. (Isn’t that just weird!) We went down to the cafeteria with Dorcas and Warren and ate enough to keep us going.
Linda and her girls brought Kobe down in the afternoon. The Child Life Specialists came by and did some fun painting projects with the children and took a mold of Kierra’s hand prints.
We all helped to make a big family tree with our thumbprints. Kobe was thrilled with the finger paints and I know Kierra would have loved it too if she had been awake enough to talk! Painting was always one of her favorite things to do.
Kierra was sedated very heavily part of the time, and other times, she would move enough to let us know she could hear us. She always loved her Grandpa’s special whistle he had for her. She stirred happily when she heard it. Just like this picture of her and her night nurse… she is peeking her eyes open, wishing she could give a kiss back.
Sadie sang her a song and talked to her. Kierra gave her a little wiggle.
Then way too soon, we had to help Kobe tell her Good- Bye.
Kobe did so well with all the tubes and lines, but I could tell, deep in His eyes, that he was sad and felt like something was wrong. He prayed for her often!
Mervs took him home and tucked him gently into bed.
The next hours were the worst of our whole lives. Our family waited for us patiently in the family room. It was torture for them as well. I was hoping for some grand lifting or revelation or holy experience at the end of her life. There was nothing except the hard sounds of her labored breathing, and the soft flow of tears from our eyes. I think I heard our hearts breaking too.
At first, she did OK with her oxygen. And snuggled into our arms.
But after awhile, she became very agitated. It got to the point where we removed the canual and just kept a ‘blow by’ there to give her little poofs to help her settle. The nurse gave her morphine at frequent intervals. We were so thankful we could be in the hospitle with a wonderful medical staff to keep her comfortable.
We told her how much we loved her and that she could go to Jesus and didn’t have to be afraid.
It felt so horribly wrong. Holding your little three year old, with a whole room full of medical, life saving equipment at our finger tips. All we could do is weep and tell her over and over how much we loved her. We were letting her go. Because no matter how much we longed to keep her, we knew she would be so much happier.
My thoughts went all over creation in those three hours.I felt like leaping up and running away. A whole world away from this painful scene. My head was screaming at me to do something, but my heart was reminding me of another scene.
A scene where pain and love met thousands of years ago. Where God turned His back on His Son. And let Him die. So that New Life could be born. Jesus loved us so much that He died for us, with all our human sinfulness. And God let Him.
That just blows my mind!
It’s the only reason we can be in heaven with Him and our Kierra someday. Surely I could trust the heart of the One who watched His very own Son suffer to death. It didn’t make any sense. It felt SO WRONG. But at the same time, it was the only love we had left to give our daughter.
The love of freedom. For ever FREEDOM.
So we held her through the last hours of her life.
When the nurse came in to reconnect her silenced monitors, we asked her when we would know that she was gone. Her breathes were coming farther and farther apart. Just when we thought she was gone, she would breathe again. We could hear the fluid, rising in her lungs. The suspense was brutal. The nurse kindly told us that when her heart stopped beating, she was gone. (amazing how the simplest facts elude you at times like this).
I had given Kierra to Steve to hold sometime in the middle of the three hours. I could tell that she immediately relaxed when she was nestled in his arms. It was where she needed to be. Where she wanted to be. her daddy was her Hero!
Now as her breathing became farther and farther apart, I laid my hand over her little heart. I was amazed at that strong little pitter pat that played against my fingertips. It was beautiful. Just as a mother never forgets that patter of kicks in the womb, so I will never forget that delicate pitter pat against my fingertips. It literally felt like music.
Then suddenly, with no warning. It was gone. And I whispered brokenly. “Run! Run to Jesus!”
And He took her up in His arms…
I know she is safe. Forever. Even if we miss that sweet cuddly little girl.
My family and Merv and Linda came in after she had flown to heaven and hugged us and held her and wept with us. They even managed to sing a sweet song before they left for their own families, who needed them.
We were so totally weary, we could barely put one foot in front of the other. We left the daughter we knew all tucked into a clean bed, her hands sweetly folded one last time. The hospital hallway seemed endless and each step away from her weighed a ton, but we made it. Down the elevator. Out to the car. And crashed into a hotel bed a few miles down the road. We were too exhausted to even think of going home until we had slept a bit. We did sleep, although the reality hit us UGH! in the face again in the morning.
So many plans waited our attention. So many comforting arms and caring hearts. So many people that were the hands and feet of Jesus to us. So many acts of kindness were showered on our bewildered hearts. We can’t thank you enough.
The hurting isn’t gone yet, but I think the healing has begun.
It will take until Eternity to be completely healed, though! Because we were created for so much more then all of this life.