Part 5: Decisions, heartache and tears......

The next hours were some of the worst we have ever seen as a family. There were so many decisions that had to be made in a very quick time-frame. First, Chad's brother Mike, Sister-in-law Sami (about 4 months pregnant) and his youngest sister Sarah were on their way from Colorado. They were told that Hailee was critically ill, but had not been told that her brain had died. Did we try and reach them and tell them? Did we wait for them to arrive to tell them? Did we wait until they arrived to turn off the life support? Chad, I, our boys and our parents sat in a private area to discuss. We determined we would not wait for them to arrive to remove the life support, however Bruce or Sue would call Mike and tell them that she had died. How very hard for them to be so far away!!! Our hearts broke, but we knew that we had to do what needed to be done. We could wait forever if we thought about it. We set the time for 4:00 PM. We told the hospital staff. They sent us a chaplain, social worker and all of what I suppose is normal. We prayed. And then we cried more.

All throughout this time, more family and friends were arriving. Meanwhile, we were still being asked many questions.
1. What funeral home did we want to go with?
2. Did we want an autopsy? (The Medical Examiner (Coroner) declined doing an autopsy, however we could request the hospital perform one for scientific purposes).
3. Did we want burial or cremation?
4. Did we want a visitation with an open or closed casket?
5. Would we want to privately view her body before the service?
6. Who would be present when life support was removed?
7. Did we want to help wash her hair, body and prepare her body for death?
8. Did we want a disposable camera so we could capture some final photos of Hailee?
I think there were more, but these are a few that come to mind.

It was exhausting, as you might imagine. I wanted to SCREAM that I wanted NONE of it. I only wanted Hailee to live. That is all. I didn't want these questions. I didn't want any of it! None of us did.

At some point, and to be honest it might have even been earlier in the day... but Chad and I both decided to get cleaned up. We were worn out. Now up for about 36 hours straight. To be honest, we both smelled. The stress and pressure and cold sweats, hot flashes and anxiety were enough to not be able to stand ourselves. So we took advantage of the little suite we were provided and took showers, washed our hair and brushed our teeth. I stood in that shower and bawled and bawled and tried my best to wash it all away. I can't be 100% sure, but I believe Chad was in the next stall doing the same. It was a living nightmare. Everything had gone pear shaped. I could barely function to take the shower. My body felt odd. In slow motion and off kilter. I was a mess.

We, (my older sister Heather, and my best friends and Mother-in-Law and Chad's Godmother Mary) spent time "preparing Hailee". With the nurses help, I washed Hailee's hair. It was very tangled and messy from all that had been done. The EEG machine had a lot of glue associated with the electrode placement and then there were the tiny drill holes. My heart raced as I washed her hair. Was I hurting her? No, I couldn't have been. Her body was cleaned. Clean Hospital gown put on. Clean sheets, blankets. My best friend Leah had taken on the task of finding some pink fingernail polish. She went to the hospital gift shop, but they didn't have any. One of the volunteers in the gift shop offered to go down the street to a pharmacy and pick up some pink polish. Leah came back with 3 or 4 shades to pick from. Together, as a womanly, motherly team we painted both toenails and fingernails. I have beautiful photos of this and will share a few here that do not disrupt Hailee's privacy.

After washing her hair, I was able to braid it the way we had planned her 1st day of 6th grade hairstyle would be. It was a braid that went sideways across her forehead with the rest of her hair hanging down. We had practiced it a few times at home. She looked beautiful. Simply angelic.

When Chad and the boys came in the room after we were done, it was so hard for them to see. They cried their hearts out. But, it was done and the women closest to me in my life stood by my side and did what was needed, in our time of need. These women are beautiful. As you can see from the looks on their faces, this was no easy task. It was heart-wrenching. But, I feel my daughter had the very best of care in her final moments on this earth. Thanks to the love and support of a wonderful nursing team and loved ones.

As I said before, more and more family and friends arrived at the hospital. One of my most vivid memories is of Chad's best friend Doug arriving. I saw them through the small square hole on the hospital doors that led from the PICU out to the main waiting area. The look of torment on Doug's face will stick with me for the rest of my life, along with the gut-wrenching cries from both men, friends, for the better part of their lives. Never did they imagine they would be in THIS moment together.

We sat as a family, Chad and our two boys just 16 and 14 years old at the time and discussed our options. First we discussed the idea of requesting an autopsy. We weighed it out the best we could between the sobs and sadness and decided we would not request an autopsy. We all felt like her little body had been through enough. We did allow them to take additional blood and spinal fluid samples post-mortem for further testing purposes.

We also asked about organ donation. We all agreed we wanted Hailee to be an organ donor. Unfortunately, she was rejected due to her infection of an unknown cause. That was heartbreaking, and has continued to be heartbreaking.

We then talked about burial or cremation. I had never in my life, ever considered what I would want for a child of mine. I wasn't even entirely sure what I wanted for myself! We discussed it pretty methodically for a grieving family of four. All of us came to the same conclusion, we did not want her beautiful body to be put under the ground. I can't even describe how we came to this conclusion, but it was unanimous. We chose cremation.

We then had to decide right away if we wanted a visitation or if we wanted to be able have an open casket at that visitation, either privately or publicly because if we did, she would have to be embalmed. If she were going to having a direct cremation, then embalming was not necessary.

WHAT????? Who ever heard of all this??!!!!

So...... together, the four of us decided that we didn't really know if we wanted an open casket for the public to view, but we knew we wanted to see her again, so embalming it was.

Can you believe what went on in just a few hours of time from when they told us she had died, to 4pm when the life support was scheduled to be discontinued? It was a whirl-wind. We were completely shattered and only putting one foot in front of the other with the help of our dear friends and family that stuck with us.

All for now...... my heart aches.

Heidi