Tuesday, August 31, 2010

August 31: Day +60

First off, thanks for the happy birthday wishes. I really appreciate it.

Out of the three things I hoped we would accomplish with Bella today, two were achieved. You can't really ask for more than two changes in a day around here... it's a tall order, so I'll take it.

First of all, my day started at 12:15 am when the room phone rang. By the second ring, my body was already in the air heading toward the phone as the blood in my body started to immediately freeze and my stomach squeezed into a knot. It was at 12:30 am the night Bella was born that I got the call in mommy's recovery room that Bella had coded. So, I have a little PTSD from after midnight calls from nursing. Last night, I could hear myself answer, and the person on the other end of the phone started with, "Mr. Ringgold?"

I hate when people call me that. That's what the resident said the night Bella was born.

The night nurse quickly began to relay the events of the prior hour and a half. Yesterday, you may recall, we began Bella on phenylephrine in an effort to transition her away from the norepi. The thinking was that the high dose of norepi Bella was on was causing her dynamic outflow obstruction to return. Norepi squeezes the heart and the vasculature, whereas phenylephrine just squeezes the vasculature, but doesn't get dialyzed like the other pure presser, vasopressin, did.

Well, the trick was going to be how to roll into the phenyl and out of the norepi smoothly.

It didn't go smoothly.

The docs went up too high on the phenyl without pulling of the norepi fast enough, and it basically froze her extremities. They stopped getting cuff blood pressure readings altogether, her hands and legs turned blue and cold, and the blood pressures they were getting weren't good. So, they pulled way back on the phenyl, and added nitric oxide gas to help her breathe better. Apparently that started to go south at the same time. The attending doc (not resident or fellow) spent 90 minutes in Bella's room trying to get a blood pressure with little success.

Meanwhile, as the nurse is rattling off all this information, he hasn't said, "Bella's fine now" yet, so I start to get nauseous and I could hear the body I was in saying, "okay," and "m-hm" at the proper rate, but the voice inside me was saying much louder, "oh God, oh God, oh God, oh God..." Finally, I could feel my stomach preparing to empty, so I got the nurse off the phone and ran to the bathroom. Luckily, no emptying took place (that's just the worst....), but I was dizzy and shaking from the story nonetheless.

Not a good start to the old birthday.

Needless to say, Angelique and I couldn't sleep a wink after that.

When I walked in to Bella's room this morning, a new machine greeted me. It has nitric oxide funneling into Bella's ventilator to help her breathe better, and her blood pressure was still in the toilet. She was getting yet more fluid to prop up her blood volume temporarily when I walked in. Same old same old.

So onto rounds. At least in rounds we decided to get an A line put in today, and we decided to try a new dose and type of steroids to try to actually treat the inflammation in her blood vessels, rather than just replace what she should be making on her own to handle the stress of the situation. The third item I was pushing for but didn't get? To finish getting off the norepi and flying just on phenyl for one day to at least try it. We never made it, and the doc was ready to scrap it. Unfortunately, that would still leave us with low pressures and the dynamic outflow obstruction. Too much phenyl however combined with the norepi, caused poor perfusion in her extremities. It also caused "mitral regurgitation" which is when the vasculature being too tight causes the blood to push backwards from the left ventricle back into the left atrium. Don't want that, either. The hope is that once off norepi, both problems go away, but we have to walk a razor's edge to get there, and quite frankly (and rightfully so I freely admit) no one wanted to do it until the A-line was in place. Unfortunately, we didn't get that in place to roughly 5pm, too late in the day to retry "titration (transition)."

So, the A line is in (and looks mighty spiffy - who dressed that puppy? :)), and we began the new dose of the new steroid. We'll hold off on the titration till tomorrow, and they'll no doubt give yet more fluid overnight (they do every night... they wait till I leave because they know the pain they would endure trying to do it while I'm there... just kidding), then in the morning they'll say in one sentence that they ran the Prisma net zero, but she'll be several hundred mLs of fluid up on the day. At least that is how just about every other day in the past two+ weeks has gone. Let's hope I'm wrong! This is one of those times I'D LOVE TO be wrong!

In other news, we were on our way out the door for pizza at my favorite spot when the entire staff at RMH was setting up for a Luau in the front room. It had been drizzling, so they moved it indoors, and right in the line of sight of one Ali Ringgold. Needless to say, the grass skirts, hula hoops, lights, and music were too much for a girl to resist. We never made it to pizza, but Ali had A BLAST at the luau, and watching her that happy, well, that was a better gift than pizza. Those of you that know me well know that's a big deal, as I am admittedly a certified pizza-holic, but you know, that parent gene... delighting more in your kids than in your self... this isn't the first time I've let Ali pick how my birthday went. It took me a few minutes to realize I wasn't getting outta RMH, and that the cold sloppy Joes were going to have to do. I was slow to come around, but in the end, we had a lot of fun.

Then, it was off to visit Bella and share some of the Aloha spirit with her!

P.S. Don't give 4 year olds cake at 10 pm, even if it's a sliver. It is now 11:44 and Ali is totally out of control screaming and crying like a maniac, of course claiming that's she's not tired. Epic ending to a long day.

P.P.S. The cake in question? Baked by Ali and mommy with lots of love! It was GREAT!

Good night.


  1. I did an in-service (breakfast) at a doctors office this morning, and Bella was in our many conversations. I go to sleep thinking about her and wake up thinking about her- so of course, on my drive to the in-service, I said a little prayer for her, and she laid heavy on my heart...so I asked the staff if they can keep her in their prayers!
    I thank God for protecting her and pray that he strengthen her, hold her in HIS hands and heal her. I am grateful that HE is a Loving Lord and know that our prayers are not going unanswered.
    Ali is a doll, and by the looks of it- she must have had a blast @ the Luau. Stunning cake...the love that was poured into it, is definitely beaming! Happy Birthday and may God Bless you with wisdom, strength and many more years with your beautiful family!

  2. Happy birthday to you. Lots of prayers for Bella tonight!

  3. I am praying for your baby girl...Janet (CT)

  4. I'm glad to hear you were able to have fun on your birthday afterall. Lots of love and prayers for Bella are on their way. Bella is a constant thought for me so I try to say little prayers all throughout the day. Stay strong.

    Take Care,
    Amber McLaughlin,CA

  5. I didn´t take your calling to post a comment the other day but wanted to let you know that I to have been following your blog for some time now...I wish all the best to you and your family...I hope thing turn around for Bella very soon. Everyday I wake up hoping that when I read the blog it is going to say she had a fantastic day and made a turn around. I was born and raised in the Brainerd area of MN but now live in Spain so I see your blog every morning. Enjoy the area and the people around you..we are afterall "Friendly Minnesota"

    Praying for Bella.


  6. Happy birthday and many best wishes to you!
    Praying for Bella!

  7. I can feel the heaviness in your heart through your writing. Be sure that one year from yesterday, you will celebrate another birthday with Bella on your side.

    Keep giving UP. God will take it in His hands and provide the healing needed.

    Keeping you guys in my most devoted prayers.

    Carla, from Portugal

  8. Happy belated birthday! I too just celebrated a birthday on the 27th. I hope that your family will all be together again, as you were, very soon. Love and prayers,
    Laura V.

  9. Well...2 out of 3 is decent....come on, Bella!
    Birthday bash looked great...that Ali is such a Ham! Love it!
    Sorry I missed the comments for a bit, its back to school. Yesterday with my new kindergartners, I had blood, tears, snot, urine, vomit, and sweat. And only the sweat was mine.
    No comments posted but lots of prayer.....

  10. The gals did an awesome job on the cake! Praying for Bella to have a good day and get this current puzzle solved. Praying for strength and comfort for all of you!

    Tina & family in NJ

  11. What a great cake and sounds like a pretty fun birthday celebration ;-) Saying many prayers for Bella and your family, as you have said, one day day Bella will be able to say "then I went home and it went away"

    Blessings from WA!

  12. Happy Belatted Birthday!!!! I had my birthday there too last year... not very much fun but much to be thankful for. I think you and my Chloe share the same day because Chloe's was yesterday too. We are thinking and praying for you and the whole family especially Miss Bella. WOW!!! Thats all I can say... You all are amazing... stay strong God is with you!!! HUGS
    Marybeth & Sam & Family
    and tell Bella to hurry up and get better, Sam can't wait to meet her!!!

  13. Not much of a birthday, huh? Next year will be so much better. Beautiful Bella will help with making the cake too.
    Praying for you guys every single day. Hang in there. Love and peace!!! Love Leah's Nana

  14. I am now reading your blog because of Tina in NJ, and keep Bella in my prayers daily. And I want to thank you . . . your perspective of "It isn't that God doesn't give us more than we can handle, rather he doesn't give us more than HE can handle" was extremely helpful to me in my daily life. You are right . . . each time I can unburden myself to God, it strengthens my spirituality. Thanks you for sharing despite your daily trials.
    Linda in NJ

  15. Happy Belated Birthday! Short and sweet today, thinking and praying for you all. Thanks for posting a pic of Bella, we miss your two kidos. Praying today for Bella to have restful day, for her new "A" line to do it's job, for the Dr's to be one step closer to solving more issues and for you to feel God's presence and strength. Sending love and peace.

    The Davidson's

    p.s.: Thanks Tim for your dedication, thank you for being such a strong father and husband, for setting examples for all of us parents. Despite all the madness, you always find the time to keep us connected there in your words. THANK YOU

  16. My Brothers and Sisters!
    I am glad to see that the Aloha Spirit is lifting yours... When can we go back... and stay forever... right?
    Sending much love and energy to you and the girls...