Friday, July 2, 2010

July 2: Day 0

This said it all in so many ways...

Transplant Day: A New Beginning.

So much to share. What a roller coaster of a day. Bella got to bed around 1am last night, and by the time we awoke this morning, Ali and mommy were already two floors below waiting for surgery. Ali was brave, like she promised she'd be, and the morning went off without any major hiccups.

Phase 1: Get the marrow outta Ali: COMPLETE

If you look closely you can see the two girls' names on the facing doors...

Ali was admitted to the hospital and was given the room right across the hall from Bella! That was quite surreal: Ang and I running back and forth across the hall to our two patients. Glad that was only for a few hours, because, MAN WAS THAT STRESSFUL! Hahaha. Whew. I could hear Ali from Bella's room screaming when they had to take more blood, then screaming again when they took out her IV. Ali seems to have some pretty intense anxiety related to any medical procedure of any kind involving her in any way. We have had total meltdown after total meltdown with her ever since Bella was born. Poor thing. Anyhow, mommy spent most of the time over with Ali and I stayed with Bella.

Before the marrow arrived, one of the chaplains named LaDonna prepared a very sweet blessing service for Bella and Ali. She brought some oil and I got to bless Bella and pray over her with LaDonna. This was a really powerful moment, and the tears were popping outta my head, because this was a sacred moment where I got to talk to God one last time and give him every last ounce of my love and commitment to Bella and this journey. I practically exploded with fervor and desire to communicate to him just how much I love my little girl. Reflecting on this, I am reminded that actions speak louder than words, and the actions I've shown since before she was even born have proven my love for her way more than any last minute vocal offering. So, I feel good, like God knows exactly where I stand in all this. I choose Bella. I choose Ang, and I choose Ali. I choose us. Our family.

Ali and mommy did come over when the marrow arrived, and Ali opened Bella's presents while I sang Bella her birth song as she received her marrow. She heard her song at her first birth, so it was fitting that she hear it at her second birth. When I finished her song, I placed my hand on my head and simply said, "May you be born again." Then the tears started again. It was okay. People cry for joy in the delivery room every day, right? I felt like we had just delivered new hope; it was like a birth. We delivered new hope to Bella, to our family, and to the EB family as a whole. Dr. Tolar was in the room to make sure everything went smooth. His presence is so unique. I look forward to being around him and learning from him throughout this journey. At 11:30 tonight, he walked in our room out of the blue. He just wanted to check in and talk about Bella, and what needs to happen next. The respect he gives me makes me feel like his partner. We're in the right place, for sure.

"Ugh! What are you putting into me NOW? Oh, wait... okay."

Unfortunately, Bella's mucositis has kicked into a higher gear today, and I spent most of the day trying to clear her mouth and throat of the endless saliva and secretions that are simply flooding her upper airway. For some reason, the transplant made Bella start vomiting as well, which really made for a stressful scene. Add to all this that her Hickman stopped working and they had trouble even getting the marrow in, and it was an absolute roller coaster in here.

Ali and her prize yield...

Phase 2: get the marrow into Bella: COMPLETE

The rest of the day has been non-stop. It's just after midnight now, and I'm spent. Just to give you a taste of the craziness, from 6:30-9 tonight, we had to get vitals on Bella EVERY 15 MINUTES to make sure that the myzenchimal stem cells that she received a couple of hours after Ali's cells didn't cause a bad reaction. Well, getting blood pressure, temp, oxygen saturation and heart rate on an EB kid is a delicate procedure ONCE, now try it 8 TIMES in TWO HOURS, all while she's got diarrhea and mucositis at the same time. I feel like I should punch a clock and get paid for all the work I did today! LOL. Suffice to say I am now fully versed in getting vitals on my own, because frankly, the nurse couldn't stay in the room that whole time, so I just did it myself and wrote down all the info and she put it in the computer. I'm glad I work in a hospital. The catch is that it takes a little over 5 minutes to get her vitals, so that leaves you with all of 10 minutes before you're starting the process again! That is a blink of an eye in here, folks. Somebody find me some Team Germany, Netherlands, or Arsenal (my favorite club team) nursing scrubs, will ya? LOL.

Main problem right now is that Bella is not peeing on her own. She has a staph infection in her line and has had diarrhea for several days now. They tried to treat this with lasix two days ago, and ended up further de-hydrating her. So, you can imagine my bafflement today when the new resident walks in and tells me she wants to give Bella "just a little dose" of lasix to help her pee. Yesterday, Dr. Tolar quietly reamed out a different resident for continuing to use so much lasix on her when it was clear it wasn't working. So, I tell her that and ask her point blank why would she consider using a drug today that didn't work yesterday? You can imagine her bafflement in the nanosecond after I stopped talking and just stared at her. She didn't know what to do, so she did what most people do in an argument and simply repeated her intention, so to be polite, I reciprocated, and asked her "why don't you try a different drug?" Long story short, she says she understands and says she'll order bumex instead. Great. Thank you.

So then you can imagine my bafflement turned anger when the fellow walks in to try to convince me why we should use more lasix on Bella. Now, I've lost my cool. It's like bringing in the closer at the car dealer or something. The fellow was a tall attractive woman and I could clearly tell that she thought she was going to charm, then steamroll me into agreeing to use lasix. Her rationale? "Because all our kids use it and just love it." Like candy or something. It was amazing. I couldn't believe I was having this conversation a second time, given how blunt I THOUGHT I was in the first one. Heads up staff on 5D: I will be VERY CLEAR from here on out, and it will be your job to take it. Good luck.

Bella is so puffy from all the fluids they had to give her...

So, Bella's mucositis continues to be a struggle, she has an infection, and she won't pee and is swelling up like a plump grape. Outside of that, everything is great. We are here. Transplant Day. Actually, it's already come and gone. Onto day +1. Ever grateful, a whole lot scared, a whole heap of faithful, and present. Present to a miracle. On the outside, Bella struggles, but on the inside, new life begins. At the cellular level, Bella will grow all over again, and while we won't see any signs on the outside for quite a while, on the inside, the miracle of life begins NOW.

Thank you for being here to witness, "Bella: Take Two"

Good night.

Bella plays with a bear Ali gave her to play with...

P.S. Some random responses to previous comments since we can't reply directly to you:

1) Cards and (SMALL) packages can be sent to the Ronald McDonald House. Just use this address:

The Ringgolds
621 Oak St. SE
Minneapolis, MN 55414

2) Thanks for the napkin trick to the parents of Elle! I used it tonight quite a bit since Bella is traumatized by the suction machine.

3) To listen to Bella's birth song, click on the video, "Bella's Beginnings (Extended Version)


  1. Tim,

    Always so compelled and inspired by your updates, which I'm addicted to. Today was a special day for Bella and I'm celebrating right now the future success that will be made manifest by the events of today. And Ali...oh my goodness, what a hero...Bless you, bless you, bless you all...

    Singing my prayers for the Ringgold clan tonight,

    Jessica Rose Western (Venice Beach, CA)

  2. More tears tonight. Tears of joy and relief. So proud of all of you, especially Ali ;)
    Happy reBirthday Bella. More prayers to you...from home.

  3. Wow, what a day! The physical, mental, emotional, and guys have been through it all...your tenacity is incredible. Well done Team Ringgold! Happy re-Birthday Bella!

  4. Well you have me crying again. I can't even imagine what emotions you are going through right now. It must be scary but also so exciting to know that Bella will soon start growing new cells and eventually new skin.
    Proud of you for standing up and telling them what medicines to give your precious daughter. You are there to protect her and you are doing an excellent job. Be proud of yourself, Daddy. Take care and give Bella a kiss for me. Love Leah's Nana

  5. Grow Cells Grow! Bella, Grandma and Grandpa send you their love and prayers. You are an amazing little girl. You are so vey blessed to have Ali as your sister as well as amazing parents, Angelique and Tim. Stay strong little one.

    Grandma Carolyn

  6. We're so happy for you all! Brian and I said a special prayer for Bella on her transplant day! FYI:Daylon didn't do well on lasik either. He's on a Bumex drip for the third day now and it is starting to work. He's still up 4 and some odd lbs from day -8 but he is dropping. Maybe you can suggest it to Dr. Tolar and see what he says. Anyway, we're thrilled to welcome you to the other side of EB! In a few years will sit around and laugh at all of this! :) Stay strong! Grow cells! Grow!!
    Love, Jennifer, Brian and kids

  7. Hello, Tim & Ang - Thank you for blogging about your experiences. I love being able to keep up on Bella & Daylon's progress. I have you all in my prayers.
    Brandie Metz