Tuesday, September 21, 2010

September 21: Day +81

Power to the People! The dreaded A-Line shortly before...


We learned how to suction a trach today. Yippee! One more thing I now know how to do that I never wanted to know how to do. I recognize that if I want my kid to live, I need to know how to do this, so, let's do this. Your kid's life is a powerful motivator.

I'm not sure if Bella had a good day or not. She had a good nap this morning, and her pressures were okay throughout the day. However, this afternoon while we were doing bandage changes, things got a little weird. Bella weighed in at 15.8 kilos today. Not good. She is literally bursting. She has blisters that simply weep/leak fluid constantly. She also had a little blister on her inner thigh next to her biopsies BURST and ooze the most unbelievable amount of fresh blood. Then, we found out her platelet counts dropped to 11,000. That's really low for Bella. I applied direct pressure on the site over the bandages like a good boy scout. It looked like she took a bullet to the thigh there was so much blood, no joke. Like I said, it was WEIRD. We figured that it was one of her biopsies that oozed, so we got more gel foam to pack it with. You can imagine my incredulity when they were all intact, and this little 2 mm wide blood blister just a centimeter away was responsible for all the carnage.

Then, as I unwrapped the rest of her leg dressing, Angelique noticed Bella developed some nasty spider veins on the inside of her left knee. Now ladies, help me out with this; I don't understand spider veins. Whatever their cause, they sit conspicuously below where the blood burst out of Bella's leg. Are the two connected? No one knows. The BMT docs were speechless. They had no idea or clue. Great, another Bella anomaly.

Then, as we were dressing her arterial line, the wave form started to get smaller and smaller, and Bella's pressures started to dip. The arterial line, if you recall, is a line stuck in her radial artery in her wrist to measure her blood pressure in real time. The thing with it is, like most lines after some period of time, they cause the vessel they are in to collapse or spasm despite the medication given to avoid and control this.

So, we put her blood pressure cuff back on her leg to get a reading off that.

Couldn't get a reading.

That was at about 6pm.

I left at 9:30 pm and we had pretty much lost the A-line completely (it was reading 30 over 20) and we were unable to get a cuff pressure at all.

So, we are going into the night totally unable to measure Bella's biggest problem area; her hypotension. Her arm is so fluid overloaded that the cuff can't read a pressure from there either. Judging by just looking at her, her heart rate is elevated by about 50 points and her respiration rate is elevated by about 10 breaths a minute, which suggests her heart is having to work over time to compensate for something. Her CVP (central venous pressure... measures how much volume is in the circulatory system) suggests that she is low from where she was last night, but still well within what was a normal number (11-12) on any other day for her. However, her nurse mentioned that last night she did really well when it was running at 15. This suggests that she is comparatively dry intravascularly compared to last night. Combined with an elevated heart rate and respiratory rate.... sounds ... like.... she .... needs...

more fluid.

And the cycle continues.

What we observed yesterday and for most of today was that while Bella is awake, her blood pressure is responding appropriately to stimulation, and maintaining a safe baseline. However, when she sleeps, she is no longer able to keep her own blood pressure elevated and needs help. In addition, she is not yet ready to pull ANY fluid off her through dialysis. They snuck only 60 mL of fluid off ALL DAY today, and it looks like it was too much.

Lights are on, and the monkey is attentive...

So, tomorrow, we are going to try a couple more things. First, we are going to set "activity" and "rest" hours for the staff to observe. We are going to try to mimic Bella's normal sleep/wake cycle as best we can in an effort to let her regain control of that circadian rhythm and regulation. This will be fun. I can't wait to kick out doctors during her nap time. I am SO looking forward to this! I will be bouncing any and everyone who tries to see her from 10-1 and 5-7. By 9 pm the evening nurse BETTER have all her 8 pm assessments and cares done because lights are going out for the night. We are also going to start her on melatonin to see if that helps her get back on track.

We may also try to "ride the fader" on her pressers during her naps to see if we can't give 'em a little bump during nap time, and roll them back when she's awake. We are really splitting some serious hairs here, but it is Day +81 and we have a pretty sick kid on our hands, so we need to PULL OUT ALL THE STOPS to make sure we give her EVERY SHOT at recovering.

Lights get dimmed, and the money is already partying!

Yesterday, I was not worried for Bella or about her. Today I am. We are in a dicey place where we have begun to take away her sedation, and as a result have to endure some pain, discomfort, and a whole lot of agitation and stress to the body. I am worried that while her spirit is strong, I fear that her body is not equal to the task. I worry that all the stress we are putting her through trying to wake her up is going to exhaust her and she''l end up getting sick, or something is just going to give out. Normal fears as a parent, I know.

There is an amazing amount of exhaustion present in me as I write having just tried for hours to 'control' or 'regain control' or even 'take control' of the situation with Bella. Again, the biggest conundrum of this journey is this: How do you break your back, strain your brain, and leverage your entire spirit to the enth degree over every little detail of your baby's care, and remember all the while that in the end you have absolutely no control over the outcome?

How do I Give Up (to God) without feeling like I've given in? How do I continue to fight and yet be detached from the outcome? How do I stay committed and not be attached? I know that God is in the results business, and that's not my job, but it sure is easy to feel like it is.

So, I go to bed tonight with an opportunity. I am sad, but I am choosing not to be worried. Why? I stood in Bella's room and did everything I could think to do and had every conversation I could think to have, and none if it made a difference... when I left, we had no way to measure blood pressure. If I can't force an outcome by her bedside, my worrying probably won't be any more effective over here at RMH. So, I can choose:

1) worry, and not get the rest I need to wake up and do it all over again tomorrow.
2) Leave it in God's hands, go to bed, rest, and be strong for my Bella tomorrow when I wake up in the morning.

I think I'll let God be "the night watchman" for me tonight.

He's better at it than me anyway.

We have a mantra in our home here: "Keep moving." Just keep moving. It's how we get out of this house every morning despite the mountain of fear, sadness, anxiety, exhaustion, etc. any of the three of us are dealing with, and it's how we get our little behinds in bed every night to honor our selves to be there for each other the following day.

Keep moving, and one day, Bella will look back and say, "Yeah, when I was born, I had this rare skin condition, but when they brought me home from the hospital, it went away."

God night.

Bella's Fabulous Socks of the Day!


  1. Reading faithfully each night (or morning, depending on when you post), praying, thinking about your family, and fighting with you. Wishing their were more I could do. But ultimately, like you said, God is in control. And He is good.

    Amy R

  2. Tim,

    I have never posted, not even when you requested the anonymous folks to step up to the plate and tell you who we are! Well, I'm doing that now. I have read your story for many months and stand back in amazement at your fortitude, humour and determination with every step Bella takes into her future.

    The internet is such an odd thing, creating the illusion of familiarity while keeping a kind of silence between bloggers and their readers. We can read about Bella in all corners of the earth but we rarely speak up, even when there are many of us waiting to hear from you every day.

    I have profound admiration for the giant strides you take as a family every day as you walk alongside that little girl with the marvellous socks, walking with her, taking steps for her, advocating for her, saying 'No' as well as 'Yes' on her behalf. Being her Dad, her doctor, her clown, her rock is the tallest of orders. Being her Mum and her sister is the tallest of orders. I think I come to read about Bella regularly because, despite a lack of conventional faith, I witness something extraordinary when I read your daily updates.

    I'll leave it at that. Keep taking those giant strides for the girl in the great socks,

    All good wishes,


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  4. It is so heartbreaking to read of the ongoing frightenly difficult, painful and courageous process that Bella, you, Ang and Ali are going through. You ask the profound question about letting go and letting God, without giving up. But, you do do it. The fact that you, Ang and Ali get up early each day and do what you each need to do, and then take your needed rest, is incredible. Your mantra "Keep moving" takes great love and strength. Keep on keeping on!!
    Sending lots of love and prayers. Mom

  5. Love Love Love the mantra and the cutest socks I have ever seen!

  6. Bella Please turn the corner and start to pee and get the fluid off. I know God all ready has the answers to what is going to happen to Bella. Been following your Blog since her birth. I have seen EB once in my Labor and Delivery job and it is sad that by the time you figure out something is wrong we the nurses have caused tons of sores. We need a cure for EB!! Please Bella get better so when your Daddy writes part two of your storie we will see that you were born with EB but now it is gone. Pee Bella Pee!!

  7. Oh yes, I too failed to step up and let you know who "we" are.

    Ryan, currently serving as Active Duty Navy in NAS Pax River, MD as a Master at Arms with the police dept.
    Melanie, stay at home mom with a passion for the life of others and police work.
    Samantha, 2yrs, with tenacity and vigor
    EJ or Ethan, 7m, sweet but very whiny
    And they absolutely are in love with each other. I couldn't have asked for a better outcome.

    So we are a Navy family praying for our fellow Soldier Bella.

    Tim, I feel Bella's fight. I know God has the ultimate say, as he knows what is best, but I pray to him that Bella may overcome whatever crud is plaguing her little body; that she can stay and fight. Many prayers to our Father to please, please let Bella beat this on Earth. For her mother and father to hear her beautiful laugh again, and so she can play with her amazing sister.

    Bella, I have to tell you a story:

    I was feeling crappy after a counseling session, so I drove to Point Lookout. PL is all the way at the bottom of MD, about 20 miles from base. It is a famous place for the confederate army, but that's not a good part. The great amazing part is when I got down to the lighthouse - the very bottom - where you are standing on a strip of land that on one side is the Chesapeake Bay and on the other side is the Patuxent River. I can't tell you how amazing it is, to feel like you are at the edge of the world. All you can see is water, and all you can hear is the ocean; waves crash up on the rocks, the wind blows hard and seaguls let out little cries. I felt God there, Bella, but Bella, I also felt you. As I walked through the grass, there appeared about five or six small butterflies. Some brown, orange and even one green. I was intrigued and I smiled, but nothing occurred to me. Then as I walk over a little connecting bridge, there were these bushes that had numerous big, beautiful orange butterflies on them. They were as big as my hand. I haven't seen but one or two butterflies since we've lived in MD for two years. Now I see well over 30 all swirling around me. And these big, beautiful orange ones were on this bush, with the wind blowing much too hard for them to hang on, but hang on they did. Now I will admit when one flew off I screamed and asked him please not to land on my head. Haha. But I immediately thought of you Bella, and how the wind is blowing too hard in your little room, but you hang on despite it.

    Bella, Baby, I know that wind is strong, but God is here, your Daddy, Mommy, Sissy, and all of your family and friends are here to help you hold on. Don't let go. We are all here to help you, Beautiful Butterfly Bella.

    God Bless, and may you all be at peace this morning.


  8. A little visual as to wear I was.

    I was at the little lighthouse icon. It's pure peace.


  9. I feel as helpless for you as you must feel for Bella at times. But you are in God's hands too. He will give all of you the strength you need - one day at a time. Hugs, Terri

  10. Tim, Ang, Ali and Bella,
    You are a beautiful family and I am praying for you. Praying that God meet your needs where you are at just the time you need them. He alone knows everything about Bella. There is a reason she is still with you/us - God has a plan for her and she isn't finished with it yet. My prayer is that God miraculously heal her kidneys so she begins to get rid of the bad fluids and her body can retain the good fluids she needs.

    As wonderful as technology is, it cannot replicate the intricate system God has created.

    Loving your little miracle from afar, and praying for her throughout the day.

  11. Tim and family....
    Thinking of you guys today as always and sending prayers of strength and healing your way. I pray Bella turns a corner real soon. Take care of each other. Casey was hospitalized for 38 days and we know it seems that life just stops at first and you can focus on only one thing..that was the first 30 days!! After that you begin to realize that for yourself and the rest of your family, you need to be in two places at one time...We'd stay round the clock with casey all the time forgetting that we had other children at home and that we hadn't had a meal together outside of the hospital in more than a month...That's when we decided to take a break...to go home and leave things in god's hands...for our own health and to keep our family together..You are so wise to leave each night, get rest, gather your thoughts, see your daughter...leave the four walls that you have stared at for months and regain your sanity. God will watch over bella at night and don't feel once ounce of guilt for leaving her there. You will soon master the trach just like you have mastered EB care. It gets easier every time you do it..Stay strong, stay together and find the blessings in every day. Don't look too far ahead..just focus on the tasks for the day....Hugs to you all..
    john, beth, Zach, Casey and Becky Neikens..

  12. "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all undertanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6

    We're praying this for you when it's too difficult to pray yourself.


  13. Prayers are non-stop from NJ for Bella, Angelique, Ali & Tim.

    I told Angelique yesterday my butterfly story (like the mom in MD). I work with Angelique but here in NJ, I am having a really bad week & normally just grab lunch and come back to my desk, but it was so beautiful yesterday so I choose to sit outside at work and eat. I was sitting and feeling sorry for myself when a BEAUTIFUL MONARCH butterfly landed on my table, sat for a moment, and flew off. I knew it was Bella & God sending me the smile I needed. And the strength to go on.

    Sending you all the strength of prayers and positive thoughts to help you all "Keep Moving".

    Tina & family in NJ

  14. We are praying. May today be a breakthrough day and may you feel the power of the Lord working through this!

    Susan in Pittsburgh

  15. let go...let god. praying for bella and your family all the time! keep moving :)

    god bless y'all
    w-s, nc

  16. Love the socks - they are indeed fabulous! I am praying for you and your family as Bella works through this conundrum.
    "Just keep swimming. Just keep swimming." - Dory, from Finding Nemo. She's a smart fish!

  17. Praying for Bella!!! God IS in control, and I'm praying He'll blow us all away with amazing healing for Bella.

  18. i feel very apprehensive in answering the questions you posed above because I can imagine that my thoughts are much easier said than done. But I decided to say these words anyways because they may help? How do you give control to god? God already has control, you thinking you are controlling things is an illusion. The biggest relief to suffering is in acceptance of what is, not in a sad way, but in a trusting and joy filled way with your faith that gods plan for you and your family is intentional and wouldn't lead you anywhere other than where you need to be regardless of the outcome. We literally have a limited amount of energy each day. Worry about the future is extremely draining and pointless. Rather than expending your energy there, focus on the present moment and what you can control with acceptance and gratitude in your heart, I have seen you do this before so I know you know, reminder. Your thoughts control your experience and you control your thoughts (although they like to think they are in control they are not)...you are doing an amazing job, amazing. Praying for you all!!

  19. Praying for my amazing family today. Keep going Bella. Grandma loves you.

    Grandma Carolyn

  20. We conitue to be prayer warriors for Bella! Storming the heavens to constantly ask that God heal her body and help her win the fight. What great posts today from everyone; it was really nice reading them all. We love you guys and can't wait for you all to come home.
    Oodles and Oodles of Love,
    The Vanderbooms

  21. I've never commented before. I've been reading about Bella's fight now for about a month from either Jonah or Tripp's page. I just wanted to encourage you and let you know that we are praying for your entire family. We know for certain that God is completely in control and nothing about Bella is a surprise to him. Knowing this, to me it seems that God specifically gave Bella to you to be her advocate. Her voice, her decision maker, her biggest fan, her advocate. It doesn't make you in control, but it is an extremely important job (given to you by God!) I will continue to pray for her healing and for you and your family to have wisdom while advocating for her.
    Prayers from Florida,

  22. Lynne, Bob, Jack and BenSeptember 22, 2010 at 9:39 AM

    Keep moving. Know that Bella's body is strong and her spirit will carry her through. Know that God has it, and you. Know that we're all out here holding you.

  23. You need to rest Tim. Who will look after Bella if you get ill? Praying for all of you.
    Lots of love,

  24. God is Great! He will take the burden from you and watch over Bella. He knows and loves her and wants her to continue the fight. For whatever reason God has given her this trial but in knowing that, take comfort to know she is strong enough to handle it.

    It's so frustrating not knowing what is her to blow up like she is but I will continue my daily prayers for her and pray that the fluid will begin to come off so Bella can get better faster. Stay strong.

    Take Care,
    Amber McLaughlin,CA

  25. I am praying for your little Bella that she may get well soon. Matthew 18:19
    Laura V.

  26. Hi Tim and Angelique,

    You all have been on my mind all day trying to send a note to make it easier for you. I learned somewhere in my past that when I reached desperation,and wanted to turn the problem over to God, my Higher Power,it might be helpful to actually go through the motions of actually lifting my hands up to Him and send the care of you all to the One who cares for us. If there is a chapel in the hospital, perhaps you could have a sacred ceremony actually doing this and let Him take the care of you all and to ask Him to guide your steps and Bella's spark of life. This power, I believe is strong and the action of handing it over physically could bring some feelings of being connected to strength and guidance. Greenie

  27. Those have to be the most fabulous socks EVER! I "heart" them a lot!

    Your post was quite thought provoking today, and I admit to having the same questions and struggles. We are told to "abide" in Christ. A book I once read explained that as meaning we should not strive or struggle - just rest in the love and power of an almighty Savior. I know, easier to say than to do. But I like the idea of resting in Him because many times, as you stated, there really isn't anything I can do. And the worry will just eat you up inside. (The Old English root of the word "worry" means to eat away at. Sorry...the teacher is coming out!)

    So my prayer today will be that you can abide/rest and let God be the night watchman; I'd trust Him with daytime duty as well! And as always I am...

    Praying for healing,

    A friend in NC

  28. Your spiritual insight and wherewithall is awe-inspiring. To have this perspective while going through all of this is simply amazing. God is great, lifting it to him and completely letting go must be difficult. I have struggled doing that with far less worries. We love you guys! Go Bella...go AWAY hyotension!
    The Gleason's

  29. Hang in there it is when times are the toughest we have trouble seeing what is at the end of the tunnel but that light is still shining for Bella. I will sing my song once again I am sending you light to heal you to hold you I am sending you light to hold you in love. Vicki

  30. One of the anonymous readers here - my prayers are with your entire family. I am in awe of your family's strength, even if it may feel to you that strength is in short supply. Diane