Let me preface this post by saying that after a day or two in the hospital, especially in the PICU, days began to blend together. I am trying to remember things as they happened and even though it's only been a month, my brain has literally turned to mush.
Let me also say, this has a lot of details of her last hours that may be difficult for some. I am writing it out, so it is not forgotten.
Have tissues at hand.
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There are moments where I can't erase the last pictures I have of you - those in the hospital - from my mind. They are painful and they are real.
I so desperately want those last pictures that are to remain in my head to be those of Easter. Your playful spirit bouncing...the light in your blue eyes. But, even those are painful knowing that a week later I rushed you to the hospital, only to have you flown from one hospital to the next.
I had taken you to your 4 year old well child exam on April 24th. You had been running a fever...again. After learning what an otherwise healthy and smart little girl you were, and me telling the doctor that you were feverish, they took one last temperature and sure enough, it was 101.9. The doctor felt as though it was something viral since you had
just finished an antibiotic for strep throat the day before. I was told to alternate between tylenol and ibuprofen every 4 hours.
That evening, I drove your oldest sister down to the children's hospital. I kept tabs on you while you were home with dad. I kept asking if he was alternating meds.
On Sunday, the 27th of April, Ena flew in to help momma out with you girls while I finished out the school year. I took her back to the hospital to wait for your sister to be discharged. We drove up the hill to have dinner with Jay and I grabbed a few groceries. Dad had asked if I'd grab pedialyte, so I grabbed some Gatorade knowing you wouldn't drink the other and a few other essentials at the store.
When I pulled in, I pulled everything into the house. I took one look at you and thought, "We need to go!" You were unresponsive on the couch with a glass of juice gripped in your hand. I pulled the glass out of your hand and set it on the coffee table. Your eyes just opened in slits and rolled back into your head. I didn't receive my typical greeting..."Momma!"
I picked you up and carried you to my bedroom so I could put clean jammies on you. You had spilled some juice on yourself. I put a coat on you and ran out the door. You were limp, just like a rag doll. I tried the health care center, but they had closed early. So I immediately got onto the interstate to get to the hospital. I called Jay in tears asking him to meet me at the ER.
When I got there, they put bracelets on both of us and took us right back. They weighed you, took your temperature, and checked your oxygen levels. They immediately put oxygen on you. All the while, you were just limp. Jay came in and they took us into a room. They pulled your jammies and as we took off your underwear, we noticed that you had soiled them. We cleaned you up and they put a diaper on you. You were breathing
so quickly, it was almost as if you were panting. They started an iv. You started to perk up a little. "I want my mimi (the word you used for blanket)." I brought it over to you. You fought the oxygen and Jay kept it over your nose and mouth.
"I want my mommy." I was happy to comply. More snuggling.
They noticed blood around your mouth but they weren't sure what it was from. They took an x-ray of your lungs. The right lung had a lot of white to it, meaning it was full of infection.
The doctor came in and told us that she needed to intubate and do it quickly. She was also going to start a femoral line in your leg. They moved you into another room. They pulled a chair over in front of the door-they told me they were going to fly you to the children's hospital.
I sat there and cried as this team worked on you. Jay stood next to me, pulling me into him as he cried too. I explained to the case worker that I had just come back from that hospital. Jay decided that he would drive me in my car back down. The case worker did whatever she could for us including a blanket for the car.
We followed you to the elevator for the helicopter. I had given them my cell phone number so that they could call me when they got you there. I kissed you and told you that I loved you.
I fought sleep all the way down. I knew how to get to the hospital-Jay did not. As time passed, I started to worry that the Mercy Flight team had not yet called. Just as we were about to pull into Phoenix, the crew member called. She was okay-critical, but there.
You were placed in the PICU. I knew where to park and how to enter through the ER since I had done it just mere days before with your sister. We headed up and they were still working on you. They took us into a "conference" room to wait. Jay stretched out on the floor and fell asleep. I fell asleep with my head on the table.
The doctor finally came in and it all was just a blur. Testing was done, cultures and blood tests. It'll be a couple of days... They felt as though you had had a hemorrhage in/around your lung. You were running a fever.
Later that day, they placed a chest tube. The tube was meant to help drain any fluid that was around the lung. They also had a tube down your nose to keep stuff out of your stomach. You were quite the sight! The highlight of my first day was you squeezing my fingers. It sure warms a momma's heart.
The next couple of days were fairly uneventful. It was a series of tweaking your meds; what was a good way to keep you sedated and comfortable? As they rolled you from your left side, to your back and to the right side...you'd cough around the breathing tube. I didn't have to look at you to know that you were coughing because the alarm sounded like "Jingle Bells", but I looked at you anyway. They did have your little wrists restrained so you wouldn't yank anything out.
You were
so puffy and they tried to balance that out too. Diuretics or not. More fluids or not. A different type of med. Or not.
The night of May 1st or 2nd (again forgive me for brain fog), they decided to put in your PICC line. They needed to pull your other lines because of the possibility of infection. Sadly, the team that was putting it in, seemed confused. Jay really looked out for you that night and momma is
so thankful he did. Even while you were sedated, you sat straight up in obvious pain. The team had to call the nurses to further sedate you. All the while momma slept and Jay watched over you.
On May 2nd, they fixed your first chest tube and put in another. They discovered a hole in your right lung which was allowing air to escape into your chest cavity, which then collapsed your lung. This new chest tube was keeping the air out of your chest cavity. They were also now seeing "disease" in your left lung too.
On May 3rd, I went down to the 3rd floor to talk to Aunt Cori. It was an update conversation. When I got back up to the room, I was immediately greeted by the doctor. He told me that he felt as though we needed to do a procedure called ECMO for you. I listened to the doctor, heard the possible complications that included bleeding on the brain, but also heard that things were dire. If you didn't have this procedure, you would probably die. He told me that it would pull blood from your body, throw it around in a machine, warm it, oxygenate it, and put it back into your body (not his exact words, but that's the gist). All of this to give your lungs a break. You would still be on the vent, but it would be turned down to the maintenance level. You would also have a 24/7 ECMO tech. The doctor said you would be on this machine for the minimum of a week.
After talking it through with me, he talked it over with Jay. I looked at Jay as if to say, "What do I do?"
So, I had to sign consent for blood, anesthesiologist (who was going to put in a new iv line), the surgical team, etc. It was going to take some time. At this point, I was really quite done signing consent for stuff. Not only was I signing consent for you, but I had signed for consent on things for your sister.
While you were gone, the infectious disease doctor came to talk to me. He told me that of all the children he'd seen that were put on ECMO, you were
the best candidate he had ever seen. All of your other organs looked great. This machine was just for your poor little lungs.
You came back;
huge machine, extra person in the room, lots of checking. They checked your pupils, rolled you, etc.
After 24 hours on the machine, your numbers had started to improve. You were weaned down to the maintenance level on the vent and seemed to be doing well.
Aunt Cori and your cousin Eleisha flew in on Monday, May 5th. Jay and I got the opportunity to go out to lunch with a gal from my old church. She had brought me some comforts from home. Then we picked up Aunt Cori from the airport. She came back to the hospital and she loved on you.
Just that day, they had increased your feeding tube feeds and all of your numbers looked really good. Jay decided to head back home to work for a few days and my friend was going to drive him back. Aunt Cori was picked up at the hospital, but she took a few minutes before leaving to read "Goodnight Moon" to you and stroke your piggy tails that our night nurse Nicole had lovingly put in. I willed you to wake up and say, "Where's the mouse?"
So, I snuggled down. They were fiddling with the blood thinner, but other than that, a quiet night. When I think back, "Jingle Bells" wasn't happening as much that night; you weren't coughing around the tube. I watched an episode of "Once Upon A Time". I made up the couch all comfy like. I covered my eyes and fell asleep quickly.
It was the calm before the storm.
At around 12:30am, the PA that was on with the doctor, came over and poked me, "Mom! Mom!" If you are like me, you wake up more easily if your own kids are saying "mom" not some strange person. As I came around, the doctor came over and said (as best I remember), "We believe Cora has a bleed on her brain. Her pupils are not responding and she is no longer coughing." I responded with, "What does that mean?" "If she has bleeding on the brain, there is nothing more we can do. We're going to take her down for a CT scan."
It was a flurry of activity, multiple nurses detaching meds you didn't need so they could fit everything into the elevator. The night nurse continually checking your pupils and was calling out your name. After they wheeled you out, I called Jay in tears. It was well after 1 by now. He kept saying that he shouldn't have left us. He said he'd had a bad feeling about leaving us when he did. He tried to get me to find the chapel, but I was afraid I wouldn't be there when you got back. I saw them coming with you and I told Jay I had to go.
I
knew by the way they walked, bringing you back, extra slow, that there was a bleed. Even before they wheeled you back into the room, I was begging God to take me instead. Life seemed to stop right then.
The doctor confirmed what I already knew. There was a bleed on both sides of the brain, one more severe than the other. I begged him, isn't there something that can be done? "No. We can keep the machine on until you can get family here."
I called Jay back. I called dad. I tried calling Aunt Cori and my friend Sharon. I continued to beg to keep you-my precious baby. I called Miss Nekol, Aunt Jessica, and Miss Meagan. I woke them
all up to talk to me. Miss Katie called me. I cried. They cried. A lot.
So...I waited. Aunt Cori finally got word and she was coming. Jay and dad were on their way down. Sharon was driving in from a couple of hours away. I sat on the foot stool and stroked your hand, telling you just how much I loved you. Or I stood and stroked your hair. I had some ounce of hope that you could still hear me. You looked so peaceful, but your little tongue was sticking out from your mouth...an image I won't erase.
I was receiving texts and calls. Aunt Cori came in, then Sharon, Jay and dad. Dad seemed ready, but I wasn't. The doctor and nurses moved things *and you* just enough so that I could lay with you on the bed. I snuggled up as best I could with all the wires and tubes with you-your warm little body-my baby girl. I wished to see your blue eyes again-just once. Sit up and argue with me. Tell me, "Momma, I love you. Can I give you a hug?"
I supposed that I was ready. Is anyone ever ready to turn machines off and watch their 4 year old slip from this life? They removed as much as they could, so I could see your precious face. I laid there with my hand on your chest, feeling your heart beat beneath it. Jay asked the doctors to silence the alarms. And so we waited...me sobbing while my hand was on your chest. Jay stood up by our heads. I kept whispering, "Go to Jesus", but inside I was selfishly wishing you'd stay with me.
There were a couple of moments when I thought your heart had stopped, but I carefully repositioned my hand and there it was. It eventually slowed-the whole process seemed like only minutes. And then I felt it...nothing. I looked at Jay and shook my head 'no.' crying - repositioning my hand to try and find it, but there was nothing. I laid there with my hand on your chest waiting for the doctor to call the time.
After I was out of the bed, I continued to stroke your head. Decisions still needed to be made. Autopsy or not? Did dad and I want a hand or foot print cast? Dad chose a foot; I chose your right hand because you sucked your right thumb. Did we want a lock of your hair? They took ink hand/foot prints too. Did we want to give you one last bath? Did we want your mimi to go with you? *That was a resounding NO from me. For as much as it brought comfort to you, it has brought an equal amount of comfort to your momma."
At some point, in my cold, exhausted and grief stricken state, I laid down on the couch and fell asleep while all of the little things happened. Aunt Cori helped to give you a bath. When all was done, the room was
so quiet compared to just days before. The shift change happened and I got hugs from the doctor and nurse who would have cared for you that day. Through everything, the doctors and nurses were top notch. I never doubted your care for a moment.
Numbly, I gathered everything in the room up, trying not to look at you because you weren't there anymore, at least not spiritually. We got everything out to the cars. Sharon had me eat. Jay brought me coffee. Aunt Cori drove and I thought surely I would sleep, but I didn't. We met up with Jay at a rest stop and he followed us home.
I spent a lot of time on the couch that day, holding your mimi, loving on your sisters. I called my doctor's office and begged for something to help me sleep. After taking one pill and drifting off to sleep, dad woke me up and when I looked around, I had to ask where I was. I still felt as though I was at the hospital. I even thought I saw your monitors.
Whether it was Wednesday or Thursday afternoon, I spent that time with Jay getting arrangements made. Dad seemed out of sorts, so I grabbed the dress that you wore for Easter, your white tights with pink hearts on them, some underwear, and your dress shoes. I picked a pink, fluffy casket as it seemed fitting for you. Once we seemed to have things figured out at the mortuary, we headed to the church. From there, we headed to the cemetery. We asked to see the children's section first. The man showed us the section and I asked which plots were available. He showed us three. When he showed us the third one, Jay and I looked at each other and without question or comment to each other, looked back at the man and told him the last one. Then from there, it was a matter of details, figuring out the hymns for the service, scriptures, etc.
The one thing that seemed difficult was writing an obituary for the newspaper. I had never written one before. Period. Let alone having to write one for your own precious 4 year old. I sat at the computer a lot, staring at the monitor. I would write some and then read it to Ena and Aunt Cori.
When I dropped the obituary off, the funeral director mentioned that you were a beautiful little girl. That you were. No doubt.
The services were held on Monday, May 12th. We had friends and family who came from all over. My boss was even able to get the preschool closed for the day so my co-workers could be there with me. Again, much of it was a blur. Jay had a quiet presence that day, but his love for you was
so evident.
There are parts to this story that I am choosing to leave out, mainly because I want to remember the good over the bad.
It has been a month since you went to be with Jesus and I miss you just as much today as I did a month ago. The outpouring of love and support in the last month plus has been beyond overwhelming. We are thankful for it all.
Now as we go from now into month 2, 3, 4 and beyond, I'm not really sure what to expect. What I
do know, is that you are missed by many - more than just family.
I will love you for always sweet Coraline...always.
