Tag that was on all the balloons that were released in her honor.
Let me just start by saying Harley had the fatal, genetic, mitochondrial disorder Alpers Syndrome. It ultimately caused her to pass (death certificate says 'Cardiorespiratory Failure'), but I'm pretty sure it was a mix between her liver failing and causing her to swell so much she had trouble breathing because it pushed on her lungs, and my poor baby already had pneumonia all over both lungs as it was. She did SUCH a good job, I'm so proud of her! The nurses didn't expect her to make it through the first night in the PICU (Friday) without being on a ventilator, but she made it 3 nights and a day!
The day she passed (Monday), we had to decide on the brain surgery in the morning, first off and the neurologist and neurosurgeon both said we could put it off (from looking at the CT scan earlier that morning), so we did. Then, they did another chest x-ray and saw the pneumonia was getting worse. Then they did an x-ray on her belly because it was the most swollen we'd ever seen and it wasn't getting better. We had a scare that there was an air bubble near her liver (?), and if there was we'd have taken her home right then and there because that's a death sentence.
Turns out it wasn't, so we went home to take showers and got a call from my mother-in-law that they were going to put her on a ventilator because her stats were dropping and we needed to get back; they were going to try and wait for us. We hurried back and literally RAN through the hospital to her room. I was catching my breath when my husband asked if I told her I loved her. I said not yet and gave her a kiss and said I loved her and as soon as I backed away from the bed the nurse yelled for the crash cart and everyone came in their yellow gowns (contact precaution for Harley's well-being) and started giving her epinephrine to get her heart started again, did CPR and bagged her. The doctor was yelling orders to everyone and my mother-in-law, husband and I were just freaking out crying and trying to stay out of the nurses' and doctors' way. We kept yelling encouraging words at her "Come on, Honey Bear! You can make it! Big girl! We're so proud of you!" through our tears and I kept rubbing her left foot because that was all I could reach without being in their way and I got Cameron to do the same.
They kept checking her pulse and saying she had a weak heartbeat, so we felt hope until the doctor pulled Cameron and I aside and she said they'd been trying to resuscitate her for 20 minutes and she didn't think she was coming back. It didn't even seem like a minute had passed. She then went to go oversee the nurses trying to bring her back and we cried and waited probably a minute or two more (I have no conception of time for when this happened) then decided we needed to let her go. We went to the head of her bed while they still did CPR and ran our fingers through her hair and kissed her and cried. We told her how much we loved her and how so very proud we were that she fought this long. I told her to say hi to my Uncle Wayne and (grandpa) Pa (in Heaven) for me. We then told them we wanted to stop, so they did. I remember watching them take all the lines off her and take the tube out of her throat from bagging her. They let us hold her and sit with her and our nurse, Bree, gave her other patient to another nurse so she could stay with us. She was so nice, I will never forget her.
When I was holding her I asked my mother-in-law to call my parents and tell them because I couldn't through my crying. I also asked her to call my boss, Ron and let him know, but when she did my husband grabbed the phone and told him for me (my husband used to work at my job with me, so he knows my boss). The first person I called myself was my co-worker, Michelle. She had just lost her 27 year old brother suddenly and unexpectedly a week or so before and she's the 1 co-worker I'm closest to and can tell anything to. I then believe I called Ivy (MommyIvy- CafeMom) because she's been such a help updating everyone for me and also because the CafeMom ladies raised over $200 for a shadowbox with a bronzed hand and foot print and I wanted to make sure I got that done because it meant allot to me and (I'm sure) all the ladies who helped raise the money. After that I think I sent a quick text to everyone to let them know and to also say I'm not responding because I was still spending time with Harley. The pastor also came (one I didn’t know yet) and said a prayer with us over her and gave us his card if we needed anything. I have no idea what I did with it, maybe it’s in the ‘So your child died…’ packet. (That’s not what it’s called, it’s very sensitive and informative. I read through most if not all of it that night because I didn’t know what else to do.)
About that time my husband, Cameron, was freaking out and had to leave. He started packing all of our stuff into a wagon that the nurses brought us. The social worker (I think) came in and he brought some purple ink and cards to do her handprints and footprints for us. I asked for 2 of them, 1 for me & 1 for Cameron. They also did clay hand and footprints, too. Those didn’t turn out too well and that night I wrote her name and birth and death dates, then tried to smooth out the cracks with water and it ended up growing mold (didn’t know it’d do that, I’m so upset over it...). We took off the purple hospital gown she was wearing and kept it, instead putting her in a sundress that my mother in law bought her. It was white on the top, then light green then turquoise on the bottom. It was sleeveless with a little frilly on the straps. My parents showed up about the time the pastor came in, maybe a little before. He ended up driving home and dropping his mom off and I went home with my parents because I wanted to wait for the lady who does the bronzed hand and footprints.
The hand and foot print that will be bronzed in the shadow box thanks to the ladies on Cafe Mom.
I remember almost every time I’d sit her up to readjust her on my lap her nose would bleed, but it wasn’t just blood, it was clear, watery liquid with some blood in it. I kept wiping her nose off like she was still alive, still talking to her and saying things like “Your nose is leaking, Honey Bear. [Wipe her nose] There. That’s better.” After a while I stopped crying and just held her and rocked her (I was sitting in one of those gliding chairs.). I kept rubbing my fingers through her hair and touched her face and just looked at her. After a little while the blood in her body started to ‘pool’ since her heart wasn’t circulating the blood anymore and she started to get dark red blotchy patches on her feet. I rubbed them and they’d go away. She also turned more yellow. I look back at the pictures and right after she passed (when the only pictures are of Cameron and I bawling our eyes out) she had a more normal skin tone, then the later pictures she was more yellow.
It felt like forever I was sitting there with her, but also like it was 5 minutes. It couldn’t have lasted longer, or shorter. Confusing, I know, but the time drug on in a sense, but also sped by. The lady finally came to do the bronzed prints (maybe around 11pm or 11:30pm? She passed at 9:22pm.) and apologized for being ‘scrubby’ (like we looked any better) and late, but she had a long drive and tried to shove down dinner, too. We didn’t mind. She was very nice and caring, helped that I had cried myself dry, too. Harley’s last nurse, Bree, stayed in the room the whole time to answer questions and be there for emotional support. The lady mixed up the clay (4 of them) and put them on the meal tray holder thing for a flat surface. I held Harley with her back to my chest and stomach with her feet dangling and we did her hand first. I think it was her right hand but I’m not even sure anymore. We did her hand prints twice (same hand) then her feet (I think that was her right, too). Then the lady gave me her card, a receipt that she did it (she said not to worry about paying her that she’d get the payment later) and a sheet with sayings on it for the plaque. I still don’t know what I’m putting on it. Maybe her name, ‘Honey Bear’, birth and death dates and a saying or maybe even something about CafeMom because I would NOT have been able to do it without them and their donations.
The lady then left when she was done (said she got REALLY good prints!) and I laid her back on the bed. Cameron had already gathered together all of our stuff and brought it home, so I didn’t have to worry about that. He had already called me a few times (from home: he’d already dropped his mom off) and was really upset still and needed me to come home, so I didn’t stay for her last bath like I REALLY wanted. I figured Harley wouldn’t mind if I went home to Daddy because he really needed me. My thought almost exactly was that Harley had already passed and instead of staying and giving her a bath that I needed to get home to Cameron, who was still living. I have a small twinge of regret, but I know in my heart that I did the right thing.
Leaving her there, lifeless, on that hospital bed in the ‘F’ wing of the ICU at Phoenix Children’s Hospital was the hardest thing to do. I took pictures and told her I loved her, knowing she’d always be with me now and could enjoy her existence again. I didn’t think I could do it, but I did. I left her body there, alone, with Bree, her nurse to go home to my empty nest. I left the hospital where we’d called home for the last time, empty handed and broken hearted.
While in the hospital, we’d always slip and say things like “We have to be getting home now.” When referring to the hospital. I joked that “Home is where the Honey Bear is.” or “Home is where the Harley is.” When I got home that night, after 1am and after the long car ride home with my parents (and after stopping at McDonalds to get something for Cameron and I to force down our throats) I realized how true that was. For 14 months we never thought about where ‘Home’ was and what it meant. It was just some place that we stayed at, ate at, slept at, etc. As soon as I stepped in the door and saw Cameron on the couch, distraught with no T.V. or video games on (which is very unusual for our house) I realized how empty this building really was. It wasn’t our ‘Home’ anymore. Home is where your family is, the ones you love and care for. The one we love and longed to care for was now in Heaven.
Her empty body, just a shell, a vessel for her beautiful soul, was left behind at the hospital. I am so thankful we transferred to Phoenix Children’s Hospital. I know this may sound morbid, but I felt some peace with the fact that her body would be at the hospital’s morgue with other children, instead of adults. I feel more precautions should be made and more respect should be shown when it’s a child’s body, especially an infant’s, ESPECIALLY MY daughter. Going off of how the rest of the hospital staff had treated Harley (and us) I wasn’t concerned. I know they (regrettably) have children earn their angel wings almost every day and they have a good reputation of being sensitive to patients’ and families’ feelings, very empathetic. I feel like every single person that works there, from the doctors and nurses to the cafeteria workers and janitors, love children very much. Everyone there cared so much for the kids; I would not hesitate to recommend PCH to ANYONE and EVERYONE.
That night, we brought all our stuff in the house from the hospital (and that’s all it was: STUFF. I’ve realized cars, houses, electronics, etc. is just STUFF. I don’t care about STUFF anymore. I could have my whole house robbed, car stolen, bank account depleted, etc. and it wouldn’t upset me as much now as before Harley got sick. It wouldn’t feel like the end of the world like it would have back then…). We just laid it on the ground in front of the T.V. in the living room. We sat on the couch, drained, wondering what to do next. It eventually ended up in her crib (also in the living room) which is where it still is today. We didn’t sleep very much that night; Cameron brought our top mattress out to the living room (we always did that so we could hear Harley’s alarms) and we just kind of laid there and felt depressed.
That’s my story of the day Harley earned her sweet angel wings.
Eternal Mother of Harley Kayleen Carson