October 11: Day +101 Part Two

Anabella Claire Ringgold

May 27, 2009 - October 11, 2010

Heaveno!

Sorry for the late post... been a l-o-n-g day.

Well, as you know, Bella's heart stopped beating today in the middle of us sitting her up to change her ulcer dressing. I'll get to the rest of it, but I'll take it from the top, as much for me so I can look back and remember the day as for you.

My first feeling on my knees out of bed this morning was not a good one. I had a bad feeling about today, but when I went to my morning prayer spot, while things didn't feel good, I had a strange sense of serenity. Hard to explain.

Anyway, I walked in the room and my suspicions were immediately confirmed. First off, we lost the A-line over night, and they couldn't get a cuff pressure (shock - deja vu). Also, they couldn't get her electrolyte labs to read correctly. In rounds, they got a lactate back which was 7.5, and it's supposed to be under 2. That meant Bella was not perfusing blood through all her organs any more. Despite any past hypotension, her lactate was always good. So, they went up on vaso and added phenylephrine back into the mix.

After rounds, when I went back into the room, I took a good look at Bella, and she did not look good. After watching my dad die at home in hospice, and after interning in hospice and the ICU, I have seen people close to death before. Up till this morning, I hadn't seen Bella close to death like I did today. Her pupils were unresponsive, her coloring was off, and her left arm, normally responsive, was a limp noodle.

I went and called Angelique. She was planning on taking Ali to get her hair cut and go to the apple orchard today. I told her she needed to come immediately. Bella did NOT look good, and I had a bad feeling that she was on her way out. While in the hallway, I saw the wound nurse, and I wanted her to see a spot on the back of Bella's head that I thought might be another pressure ulcer. I grabbed her, told her I could use her opinion, and she came in the room about 15 minutes later.

We sat Bella up like always, and out of nowhere, just before finishing up, Bella's heart rate just plummeted to 65. We laid her back down immediately and started to give her oxygen, her heart rate then just went away. The team was in the room so fast you wouldn't believe it. They worked together in the most organized, focused manner. They were simply amazing. They began chest compressions before I knew what was going on, and I just stepped back and watched the process of my daughter dying. She did not respond after 2 minutes, and the attending ICU doc announced they would go for 10 then call it, and we all agreed. The BMT attending doc stood beside me and coached me through the whole thing, and explained that I could tell them to stop at any time. I called Angelique right when they came in the room and told her we were coding, so I knew she was on her way with Ali, and I didn't want to call it without them. Plus, Bella's bed is foam, and she sits on a foam mattress on top of foam, so even with the compression board underneath, I didn't have the occurrence that they were really hurting Bella too much.

At 8 minutes, I walked into the hall and just begged Ang to walk through the doors. She did a minute (eternity) later, and the social worker quickly swept in and took Ali to the end of the hall to play. I explained the situation to Ang, and she began to cry in my arms. I asked her if she wanted to go in the room and she said yes. At that point we were at 10 minutes, and we had them stop. We kicked all non-essential staff out of the room, and it was just our nurse, the attending ICU doc and the three of us. I put my hand on Bella's head, and I asked the ICU doc what would happen next, because Bella was breathing on her own.

The doc cocked her head to the side and looked at Bella, reached for the stethoscope, and began to listen to Bella's chest. After a second, she said, "What a minute, I think I hear something. Yup. Yup. There's a pulse, it's coming back. She's coming back!" I immediately hooked her EKG leads back up (they got pulled off during the melee) and said, "She's not done. She's not done." I looked up at the monitor. Within a short amount of time, her heart rate was 160. Un-freakin-believable. That's when I updated the blog and facebook.

We weren't out of the woods at all, we knew, but she also clearly seemed to be rallying one last time. We all agreed no more CPR would be done, however. Mommy began to read the blog letters to Bella, and I played my guitar for her. I went to call my mom to update her, and cram some food down my throat. When I returned, it was about 2:30, Bella's heart rate was down to 92, and the wave form looked weak. I felt like it might be the end, so I walked up to Bella, and held her hand.

I looked up at the monitor, and her heart rate read zero.

Bella apparently waited for me to come back into the room, and once she had her mommy and daddy by her side, she left.

This time, it was quiet and peaceful.

We took her off the vent, and unhooked her from her lines, and sat in my green chair and finally got to hold her. She took her last breaths in mommy's arms.

We couldn't have asked for a more beautiful moment for her transformation from life to afterlife.

The moment her heart rate went to zero? Her song came on the iPod. I got to harmonize and sing with myself as I helped take off her lines and tubes. It was the song she heard as she was born, and it was the song she heard when she died. Planned by me the first time, planned by God the second.

The chaplain came in and said a beautiful prayer service for Bella.

They were all so gracious. They gave us as much time as we needed to say goodbye, so we took it. This was our opportunity to say goodbye properly.

Let me bring Ali into the mix here.

Erin came (GOD BLESS HER) on a moment's notice to the hospital to take Ali on an impromptu play date with Ellery. While Ali and I were downstairs waiting for Erin to arrive, I began to have "the talk" with her. I asked her if she knew about heaven, which I knew she did. I told her how we all go to heaven eventually, and that Bella was really sick today, and that she may decide to go to heaven today.

She asked me, "How do we get into our bodies?"

Seriously, she only 4 and a half, folks.

"Well," I replied, "Our souls start out in heaven, then we are born into these bodies we use. sometimes only for a few hours or days, sometimes for years and years. When we're done with them, we leave 'em behind and go back to heaven."

"Oh."

We agreed that if any of us went to heaven, that the rest of us would be sad. I told her that the kicker is that we never know when any of us are going back to heaven. It's a great mystery. That's why it's important that we always say, "I love you," to the special people in your life, because you NEVER know exactly when they're gonna go back to heaven.

Erin arrived, and Ali was on her way. I felt like we established a good groundwork in case Bella didn't make it today. So, when Bella left us, we decided Ali should be back with us to be with her baby sister. So, I called Erin back and she got Ali back within just a few minutes. I met her downstairs, and I took her to the meditation room on one of the top floors of the hospital. Ali had never been there, so I figured it would be the perfect setting to tell her the news.

When we walked in, Ali marveled at how beautiful the room was. It has a beautiful sky light of sorts, and I held Ali and said, "I bet that if we opened that window, we could see all the way to heaven." She nodded in amazement. Then I continued, "And we'd be able to see Bella smiling back at us. She's up there in heaven now." With that, Ali got it. She began to quietly cry into my shoulder. We hung out for a minute or so, then I asked her if she wanted to see Bella, and she said yes, so we headed to the room.

From this point on, the scene in the room was one of family, serenity, peace, love, nurturing, and just about the most natural seamless transition from this life to the next a family could hope for.

We took turns holding Bella in our arms, and we wept. A lot.

Ali began to immediately start to draw for Bella. She drew a portrait of Bella from her birthday. She then drew a picture of a horsy with wings for her. Ali just jumped right into it.

After a while, Ang and I felt like it was time to put Bella back on her bed and we decided to bathe her. It felt SOOO good to take off all her bandages. I took out all her lines, and returned her to her beautiful self. After taking off all her bandages and taking out her A-line, med line, central line, and trach, I left the G tube, because that might have made a mess, and I didn't really know how to empty the balloon anyway, so it was all good. Besides, she came here to MN with that, so she looked like her pre-transplant self.

Then, one of our primary nurses, Renee, who we were so fortunate to have on tonight, found us a really cute sleeper we could dress Bella in. So we got her dressed up and laid her comfortably in her bed with her latest Teddy bear friend. She looked so cute. Ali put cute little stickers on Bella, something she could never do in life. We eventually removed them, but they were cute.

Then, child family life came with a couple of books for Ali and a handout that had various ideas for end of life care. In it, a lot of the things we were already doing, but they had two really cool things, plaster molds of hands and feet, and finger paint hand prints. I told Andrea, who was just wonderful, that we'd like to do as many things as she had supplies for since we'd never get to do any of it again. Ali had SO MUCH FUN in this creative process. She helped out and was the best medicine in the room, bringing levity to the room with her hilarious commentary.

We made some absolutely AMAZING life casts that I'll share tomorrow; they are drying right now. We also did two really awesome hand and footprints with paint. I'll share those tomorrow as well.

At one point in the evening, Ali went to the playroom for a little bit, and Angelique and I had a chance to spend some private time with Bella. We got to say everything we needed to say to be complete, and it was just the most sublime moment of closure. We left nothing unsaid.

At about 8:30, it was time to say goodbye.

We tucked Bella under her butterfly blanket, and turned down the lights, put on lullabies, and said goodbye exactly the way we did every night. It was so natural. We came home to RMH, and had Renee call us when Bella was gone so we could come back and clean out everything after Bella left. Our friend Lisa (GOD LOVE HER) came on a moment's notice to hang out with Ali while we went back, got it done, and came home. Here we are, it's 12:53 am, and Ali is still running around like a maniac, and it's all okay.

Before I forget, in lieu of flowers, tomorrow I will post a chip in widget where you can make a donation to P.U.C.K., the charity raising money for this EB study at the University. Please, help be our partner in curing EB. We paid with Bella's life. Please chip in whatever you can.

Needless to say, our adrenaline is holding us up right now, and shock and numb will keep us going for a while. There is still so much to say about the journey. I am too fried to jump in this evening. Tune in tomorrow, and there will be more. The journey for Bella has ended, but the journey for us all continues.

How can we all make meaning out of this journey Bella has taken us on?

Now it's our turn, and when I say our turn, I don't mean Ang and my turn. I mean YOUR and OUR turn. Bella did her part, like no other.

What is your part?

God night.