Thursday, September 30, 2010

September 30: Day +90

Daddy reading your letters from his phone (Droid X)...


It was mostly a quiet day for Bella.

In rounds, Dr. Somani wanted to set an aggressive goal of taking off 200 mL of fluid by midnight. This was a reversal from him wanting to take it super slow, and Sam encouraging all to go super slow. He wanted to see if the avastin really did the trick. We were running her -5 an hour (the Prisma dialysis machine was set to pull out of Bella's blood 5 mLs per hour more than we infuse in through IV meds and nutrition) since midnight, but he wanted to ramp it up since her blood pressure was still 100s over 70s.

By noon, we were off vasopressin altogether!

However, by 3pm, it was just like old times. Take off too much too soon, and by the afternoon/evening, kerplunk.... Bella's blood pressure tanked again. First, it was just when she was sleeping hard, but then later in the afternoon, mean pressures were in the 40s even while we were changing her trach.

By 8 pm, we needed to turn the vasopressin back on and we ran her even on the circuit for the rest of the day. By the end of the day, we will still be -100 at least, and on the same pressers as overnight. The question will be if Bella's BP will rebound back up, or did we do something to mess it up (again). I suspect we might even need to run her +10 per hour over night to give her back a little volume and go up a little more on the vasopressin to give her some head room.

The reality is that Bella's vasculature recruits fluid back into it from her tissues at HER rate, not ours, and we need to find the sweet spot... her rate, and stay there. I completely understand testing her to see what she was capable of. How will we know unless we try?

I kind of felt like a heal as I was reading all your congratulatory letters to Bella, because by the time I read them to her this afternoon, her blood pressure had dropped in HALF, and I was hoping to inspire her to rebound. She is really beat from her withdrawals; she slept all day, and barely moved. I made sure today they didn't withhold her sedation even though she was sleepy. We get into this vicious circle with sedation. She is too sleepy, so we hold scheduled meds, then she gets way too agitated, so we hit her with PRNs (meds-on-demand), and by the time they work, its hours later and she's SNOWED by the stacked drugs and exhausted from the shakes, then it starts alllll over again. This just happened again yesterday. Too many PRNs after going back on the circuit and BAM, knocked out today.

However, having said all of the above, we are still WAAAAY down off pressers, steroids, and might drop under 15 kilos tomorrow morning for the fist time in 10 days. Now, we need to just run her even and let her insensible losses (the amount of fluid she naturally burns off) do the fluid loss.

We are not out of the woods, but at least there is a lot more sun shining through the branches!


Bella's Guestbook, where staff have been writing the most beautiful notes to Bella about what they have learned since meeting her...

While I'm sad that Bella's blood pressure tanked yet again, I am more hopeful than before that she is improving, and most importantly, we have the full support of the docs to fight for her again. Dr. Doom is ON BOARD with Bella, and we are ON BOARD with Dr. Doom! Turns out he works with my good friend Logan, who had a lot of really nice things to say about him. I wrote him last night to apologize for writing him off on day one, and for making him the antagonist of the story. Hey, every good story needs an antagonist, and I thanked him, because he mobilized YOUR support like never before, and so without him, things may not have turned around, and we certainly wouldn't have had the avastin on board.

Mina and I in action cleaning and changing Bella's trach...

We got Bella's custom extendo-trach today and put it in with the help of our stellar ENT resident, Mina Le. She rotates to Hennepin County Hospital tomorrow, and we are going to MISS HER! The new trach definitely lets Bella actually move her head! When we sat her up to change her ulcer bandage, her head was bobbly compared to yesterday when it was locked in place by the bigger trach and velcro holder.

Look, even more cheeks to kiss! Behold, the extendo-trach is low profile till it squeezes out from between Bella's many chins...

The first two butterflies arrived in the mail today from Colorado! The walls are filling up. Thank you, and KEEP 'EM COMING!

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

God night.

Stuffy Gloom, M.D. hangin' with Bella. That's the name Ali gave him...

Here is Stuffy doing I don't know what with Ali's newest bear from Child Family Life that has a custom trach fitted onto him! He will hang out with the dog that has a central line placed in him. What a motley crue...

Ali and mommy were treated to a bald eagle, a hawk, an owl, and a falcon at RMH after dinner!

Wednesday, September 29, 2010

September 29: Day +89

It began with a little hug while off the circuit...

Which turned into this moment...

and ended up here... Upright. First time since July 4th.


I won't string it along... I know this is the first thing you want to know...



A reader sent us this pic from their garden this summer...

Bella's blood pressure is ROCKING, and as of 9pm tonight, she is OFF PHENYLEPHRINE and her vasopressin is at .0003, the tiniest dose you can be on. We are a little fluid up for the day, but they have been pulling fluid all evening, and Bella's BP is GOING STRONG.

We don't expect pee since she is on continuous dialysis. Because it is always running, it doesn't give the kidneys the chance to kick into gear; basically, they are not needed. So, no pee yet, but that is okay. First things first. We really really REALLY wanted that blood pressure locked tight!

Folks, we may have just discovered "Fix-a-flat" for leaky vessels!

Having said all the above, part of me has not yet jumped for joy, because at one point today, Bella's blood pressure dropped way down during a nap, but came back and is rocking strong. We had good blood pressure over the weekend, then it went away yesterday, so I confess that I am afraid to get my hopes up too high. I am also just so phenomenally exhausted by this roller coaster of faith, strength, and endurance, that I just can't get too high or low in the face of anything along the way, otherwise, I would have worn myself out by now.

Angelique and I were talking on the way to pick up Ali tonight about the fact that we haven't cried tears of joy like many of you have. I know that I have cried only maybe once or twice since I came here. We confessed this to each other and talked about the fact that we just have to dampen our emotions a little in order to not get to up or down, so that we can keep moving, day in and day out. It is our responsibility to our family to "keep it together" through it all, so we take good care of ourselves and practice some serious emotional regulation and discipline, so that we remain strong for each other, and for our kids. So, our happy moments out exploring MN and measured, and our sadness, fear, frustration is also measured.

I want to make a point about the difference between regulation and repression. One is healthy and one is not. It is one thing to acknowledge feelings, it is another not to. On the other side of the coin, it is also one thing to acknowledge feelings, and another letting them dictate your actions. Feelings aren't reasons. They are just transient, ephemeral energy moving in and out of existence. So, we do not act on our feelings, and we don't let our feelings run the show. We pay attention to them, listen to them, process them, experience them, then release them. Stale air and water do not possess the same freshness as moving air and water. Feelings are the same way. So, we let them flow in, and we let them flow out.

Remember the phrase "This too shall pass?" The biggest mistake is only applying it when faced with a bad feeling. The second biggest mistake is thinking, "I hope things stay like this forever" when things are good. This is not pessimism, it is very much within the very basic laws of nature. Emotions are Energy in Motion ( E - Motion... I know you're smiling, mom, I got that from you!:) ) All energy exists in motion, and it can never be created or destroyed. This leaves the universe and everything in it in a state of "permanent impermanence." Practicing this impermanence, well THAT is what makes life worth getting up and playing, day in and day out.

Okay, okay, back to matters at hand. Sorry, but even we wonder how we are not only still standing at this point, but generating so powerfully in the face of everything our family has endured. Figured I would try to articulate a little of the "how," and if it makes sense to you, feel free to try it out in your own games of life! If not, just read on... I'll get back to Bella now! :)

When I walked through the door this morning, it was like the moment of truth. All the prayers were going to be either answered or not when I looked at that monitor and read Bella's blood pressure.

Well, no sooner than I open the door, and our nurse looks at me with DAGGERS in her eyes, and says, "Prisma is crashing. Like right now."

"Okay," I think to myself. I still haven't seen the monitor yet.

I turn into the room and look up at the monitor...

100's over 80's.

"Have you rinsed back yet?" I ask? When we switch the circuit, there is a large volume of blood in the tubes and filter... essentially "in the circuit." So, when we know we are changing out a circuit, we give back the blood in the circuit to help with Bella's blood pressure, hence "rinse back." When this happens, it causes Bella's blood pressure to surge for a little while because we have just crammed an extra volume of blood back into her internal circuit, thus increasing the pressure within it.


"That's all I needed to know." I respond, smiling at the monitor.

It worked.

I should really say THEY worked. The drug, combined with your avalanche of round the clock prayers, intentions, thoughts, wishes... ENERGY. Isn't it inspiring to see the two working in harmony? They DON'T have to be mutually exclusive!

We used to debate when we would have generous blood pressure, should we wean pressers or pull fluid? Well, we're pretty much out of pressers, so there isn't any debate anymore! Now the debate will be how much to test the waters to see how effective this drug was. Bella had generous pressures for 5 straight days... before we gave the drug... but we could only pull fluid at a tiny amount, and the day after we ended up negative 100+ for the day, her pressure tanked. What is the test to determine if this new drug worked at all, or any better than the sedation wean (and your prayers) over the past week? We sincerely want to know if it is the drug, because if it is, man, that DOUBLES the number of successful times this drug has been used in the pediatric BMT population, and may well open the door to more widespread use at the U of M... essentially the birthplace of BMT!

What service we would be if that was the case. What more can you ever ask for than to be of service to your fellow man and womenkind? Is there a better cause? Is there a more fundamental point to it all?

Not to me.

I have written about the following equation before:

E (Events in life) + R (your Response) = O (the Outcome)

E: Bella is born with EB
R: Live life to the fullest, and, in the process of trying to save our daughter's future from one of pain, suffering and an early death, she inspires thousands across the globe, is part of a study to find a cure for an incurable disease, and potentially unlocks a new treatment for a potentially fatal side effect in bone marrow transplantation that previously has not had an effective treatment for it.
O: Leave inspiration and healing in our wake. Go to sleep at night with no regrets, and a spirit of genuine gratitude.

Once you realize you have influence over any outcome you are facing, you are no longer a victim. No are not in control, either. That is the lesson I learned from Bella's birth. However, you are always the author of your response to anything life throws at you.

What story will you write?

Here's the one we're writing: "One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away.""

God night.

Ali playing in the bounce house at RMH after dinner. If you are over the age of 10, don't play in a bounce house after dinner. Not a good idea. Just sayin'...

We received this in the mail today. Have you ever seen anything funnier?

We were treated to an absolute FEAST at RMH tonight! It was AMAZING! Thanks to all who helped make it happen!

Tuesday, September 28, 2010

September 28: Day +88


Well, the avastin is IN! Let me tell you how we got there...

We were still undecided this morning, even while walking to the hospital. Angelique took the day off so we could meet with the docs together and so she could be there to support Bella as well. We were waiting for some sort of signal from God (apart from the two signs we already got) saying today is the day... or not.

Well, when we walked into Bella's room, we got the sign.

It was like Groundhog Day... again.

Blood pressure was in the toilet... again.

I know.

It hit us like a ton of bricks. This has happened before, where I walk in after thinking we cracked the blood pressure code the day before, only to walk in to pressures in the toilet, and Bella having received fluid to bump up her BP through increased fluid volume.

Today was just like one of those days. Pressers were up, not down from when we left, fluid was up, not down, and pressures were still alarming.

In one sense, it really put a chink into my faith armor, but in another, it made the decision to use the drug very easy! One of the things I realized on the way to the hospital this morning was that after Thursday's miracle turnaround, I made the mistake of thinking that we wouldn't have any more setbacks, and that we wouldn't have to make any more tough decisions.

Tee hee! Silly, daddy.

So, we got to work doing a good old-fashioned, two-parent, full-body dressing change, just like old times! It was nice to really clean and preen and fuss over just about every inch of Bella. Believe it or not, I got to a point before we left home where I actually enjoyed dressing changes. Bella was peaceful during them; she was lobotomized by Baby Einstein and Mickey Mouse Clubhouse on the flat screen in mommy and daddy's room. Mommy would give Bella a bath while daddy would cut and prepare all her dressings. Then, we would get to work. It was like our little special time where we could touch, caress, and care for Bella. My favorite thing was massaging Bella with cetaphil. Normally, you can't rub her skin at all, but with all that lubrication, I could rub and massage her skin and allow her to FEEL sensations she otherwise never felt since much of her skin remained wrapped under dressings 24/7.

Arm wrestling Champion... BELLA!

Anyhow, it was nice to have the three of us reunited in this ritual again. We played Mickey Mouse Clubhouse on the DVD player so Bella could hear it while we washed and changed her bandages. At one point, she was actually sticking her foot out for mommy to massage it! Super cute.

Bella sticks her foot out, as if to say, "Oh yeah, mommy, right there!"

So, back to the bevacizumab (avastin). We spent all last night researching it, and we found that most of the side effects are from repeated use for elderly patients with cancer while also on chemotherapy. So, we decided that the single dose would not present a big enough risk. We also met with both Dr. Somani and Lund this afternoon and they agreed. They both felt it was a safe option. At the end of the conversation, there wasn't this "Alright, let's do it! Yee-ha!" attitude. The room was pretty somber. There was a realization that it is quite possible that it was pure coincidence that the one other patient recovered due to this drug. There was also the realization that this is that "out-of-the-box" option we've been searching for. What happens if it doesn't work?

However, I am reminded, yet again, of Daylon, Bella's boyfriend. I am reminded of how "out of ideas" they were with him, and how he has since not only left the ICU, but he's been discharged from the hospital!

I am reminded that God sets out cups of water for us in this marathon of life at more than one water table along the way.

I am reminded that you can drive all the way across the country at night, never seeing more than 200 feet in front of you at any given time.

One dose is all it takes...

I am reminded that God alone is in charge of this situation, and while we did our best due diligence, and while we infused the drug over 90 minutes, I laid into my guitar for Bella till my fingers were pins and needles. "I played my best for him," ran through my mind from "Little Drummer Boy" as I offered up my most sincere and heartfelt musical prayer. Would any of it be enough? Only God knows. We are in the process business, and God is in the results business. So we did every thing we knew to do to make this as safe and successful as possible, and at the end of the day, we literally left knowing that by tomorrow the drug will have most likely worked or not worked. It is now out of our hands.

Daddy rockin' the Rally Cap for Bella while offering musical support and prayer...

Again, this returns to the basic conundrum of this journey: you make decisions as if you are in control of the outcome, all the while knowing (but not always remembering) that you are not in control at all.

So, we did what we could, and by offering up your prayers, intentions, energy, thoughts, wishes, etc., you did what you could. WE ALL DID WHAT WE COULD to make today a success, and now it is up to God. I know I'll sleep (maybe not the entire night) due to the exhaustion I feel, but I just have this intense urge to bargain with God over Bella! I want to promise all kinds of things in return if he just make this drug work. I want to promise that I'll never bargain again, just like I promised last time. :) I want to lobby and advocate for Bella to God like I do to the docs, hoping my twin talent of appealing to logic and emotion will be enough to sway him into saving our daughter. Once again, I am giving my power to the drug, not God.

Bella has the most amazing big sister ever...

When we left tonight, Bella's pressures were still soft, and we tweaked her sedation a little, rolling the precedex back a little since it is the only sedation on a drip that we could easily titrate, and based on Bella's response, adjust as needed. Bella just seemed really tired, and really sedated all day. I think the weekend of withdrawals into yesterday really wore her out.

We ended up greater than -100 yesterday in fluid ins and outs, but today we'll end up just over +100. But, combined with her insensible losses, a net zero for two days minus a couple hundred mLs a day is a pace we sill be happy maintaining if we can.

Thank you for your most honest and heartfelt prayers and energy. In this present moment, please focus on one thing:

Bella's capillary leak is completely healed by tomorrow, as are her kidneys, and she begins to pee tomorrow.

Please hold this thought and none other for the next 24 hours. As a result of this true statement, the house of cards will fall and Bella's complications from BMT will all but go away. Specifically, Bella's blood pressure will return to normal, and she will begin to peeeeee!!!!
Thanks for holding this space for the next day. I am a firm believer in the energy you send out. There are enough of you, and your intensity with which you offer your love is second to none.

Bella's Fabulous Fall Socks of the Day!

Angelique and I have a nickname for us as a couple; Team Heam. Long story, but our motto/slogan is "Together, there's NOTHING we can't do!"

Well, I feel the same way about our international Team Bella. Together, there is nothing we can't do!

P.S. Angelique and I like the Bella tour idea... in a few years... So keep that vision coming as well!

P.P.S. One day, Bella will say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away.

God night.

Monday, September 27, 2010

September 27: Day +87

Mommy showing Bella one of her get well cards...


Bella turned sweet 16 today. Months, that is. Well, today was a good day! We spent the day getting Bella's sedation back on track after the past 48 hours. Bella was off her dialysis circuit for roughly 24 hours, which is the longest she's been off it. They minimized her fluid intake during that time, and pulled back on her sedation. Probem was, they pulled back too far. They were concerned that she would get too snoozy off circuit and this might cause her BP to tank again. Good move, except she ended up with little to no sedation on board by the time she went on the circuit so she was pissed off and feeling the full effects of the withdrawals all through the night and into the morning.

The shelf above our dining room table (there's a lock of Bella's hair up there, too)...

By about 9 am, she CRASHED. She dropped into a deeeeeeep sleep with her heart rate going as low as 75 bpm at one point. However, her blood pressure was generous the entire snooze! We let her sleep all morning so she could catch up on some rest, poor thing. She was shakin' lika a leaf on a tree.


Better to deal with the tremors than lose her blood pressure again, so unfortunately, she just had to grind that run out. We reset her sedation to the levels it was at on Friday. Friday was really a "sweet spot" for her where we didn't have to give any bumps of anything during the day; we had found a happy medium where BP was working fine in and out of sleep, but when she was awake, she wasn't shaking.

We also dropped her pressers to next to nothing! The phenylephrine is down to .1 (minimum dose - we're keeping it "in the line" in case we need it) and the vasopressin is down to .0005. Starting dose on that is usually .0003, so we are just about off and pressures still are generous!

The beautiful sky on my walk to the hospital this morning...

Folks, I can't tell you how it feels like we're in a dream right now. We have been looking at that gal-darn (that's a "Lori-ism" - one of Bella's primary nurses is famous on the unit for great word inventions) monitor with abysmal pressures for months. It is so nice to see these rockin' pressures now, whether Bella's awake or asleep, and especially as we have gotten rid of almost all her BP medication!

We are going to continue to pull the bare minimum of fluid off Bella each day until we get her back to her dry weight. Sam, my buddy the ICU doc, was on tonight and urged me to be patient with how fast we pull off fluid. There is no harm in going slow, but if we pull it too fast, it could dry her out intravascularly (again). So, if it takes 10 days instead of 7 or 8 to get her back down to her dry weight, big deal.

So, where does this leave us?

Well, we're pretty excited about this corner that we have ALL prayed/hoped for for so long.

The next BIG question is...

Avastin or no Avastin?

This is the potential wonder-drug to treat capillary leak syndrome. Having just turned the corner on blood pressure, are we in the clear? What if this drug really can get Bella to pee, THIS WEEK? The drug can cause clotting and bleeding. Bella already has a honkin' clot in her liver.

The wall grows!

Also, the indications from the drug website say don't use this drug within 28 days of having surgery. We're still only 12 days out from Bella's tracheostomy. Hmmm.... is that just a CYA (Cover Your Arse) clause, or a serious warning? It is predominantly used in cancer treatment and patients in all studies who had adverse reactions were over 65, and were given between 8 and 16 doses. Hard to extrapolate from that what one dose could do to a 16 month old. Hard to imagine that one dose could do what it did to the patient in the study i.e. cure him/her of all his/her complications from BMT. Are we supposed to play a part in its future use in pediatric BMT? Please pray today/tonight that God continue to reveal the best path for us. I'm gonna check in with my mind, heart, and gut as well.

There is much to pray about tonight.

One day, Bella will say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

God night.

Fabulous Socks of the Day! (Ali's favorite pair)

Sunday, September 26, 2010

September 26: Day +86


Oh the days just roll on by. I just looked up at the date and can't believe we originally were supposed to be packing up the minivan and heading home in 2 weeks. Wow, what a different reality that is from this one. I thought THAT road was gonna be difficult, and I was worried if I would be able to handle THAT. When I say THAT, I mean the 30-60 days we would have been on the BMT unit followed by the 70-40 days hanging out in the RMH.

I am so grateful to God. He clearly knows me better than I know myself.

He knew I was up to THIS task (84 straight days in the ICU and counting), when I thought I wasn't even up to THAT aforementioned task. If you had told me before this had all started that on September 26, we'd still be in the ICU and in spite of that I would be healthy and vibrant and focused and FIRED UP with a world wide network of prayer warriors literally praying around the clock and around the globe for Bella, I wouldn't have believed it.

He's told me this before. He has said to me that If he told me the heights he is going to lift me in my life, I wouldn't believe him. He's told me before that he's NOT going to give away the ending, because I wouldn't believe it was "possible." All he asks of me is to trust him.

He says to me, "I gotcha."

I have found myself saying that to Bella throughout her short life whenever she needs consoling. I find myself saying, "I gotcha... daddy's gotcha."

What a great image of God as a daddy, holding me, rocking me, whispering to me, "I gotcha... daddy's gotcha."

How do I know he's got me? Well, we prayed. He answered.


WE DID IT! and when I say WE, I mean you, me, God, the Universe, the all that is everything. WE, in communion, saw and visualized an outcome for today and it came to pass. God be praised! Yesterday, when I prayed that Friday was not a fluke and walked in to see the monitor look as it did (when I took that picture), I found myself saying, "God be praised," out loud. Now, that is not a saying I normally say, but I have found it to be on my lips and in my heart A LOT over these past 4 days.

For those of you that do not believe in God or a god, I want to continue this conversation in a way that does not alienate you. I want you to think of whatever force, entity, power greater than your self that works for you. It could be the universe, pure energy, the force, nature, the unified field, this online body. What I want to say is that for the past 4 days, something has uplifted me, like literally lifted me up (okay not literally - that would be levitation, right? That definitely did not happen) and held on to me, wrapping me in... hope and safety. I have felt impervious to doubt, fear, skepticism, anxiety - as if I was sprayed with teflon - and though it has been around me, it has not stuck to me. I have simply formed a bubble around Bella and I have sat/stood inside with only Angelique inside with me. It has been like a protective shield or force field.

As I do my best to describe the experience I have been having, what I chalk it up to is the upgrade in the power level of intention, energy, thoughts, and prayers being offered up to Bella and our family, combined with a willingness to give up on the medical establishment in order to make room for a miracle. It has been a simultaneous motion of your pushing the door harder from the outside and me opening it up from the inside. I have been giving all my power to Bella's myriad machines and medicines, thinking that if we just found the right dose/amount, THEY would save her. Don't misunderstand me on this... especially anonymous defensive medical professionals... you know who you are... (Try not to "Take" offense, although I guess it is yours to take after all, not mine) The point is that by giving all my power / putting all my stock in medicine, I left out room for any other power. Even the most evidence based scientist knows that there are children that heal all day, every day, from things "the experts" say are impossible to recover from. Early on, although I would read your comments that said you were praying, I just didn't fully take them to heart. However, when the docs kind of held up their hands like "I give up" this week, I could no longer look to them for answers. They admitted themselves that they were out of them, and they admitted they were worried, even scared. So, I came back to you, pleading for your help.

I turned to you, because I honestly was afraid to turn to God.

I needed your fire to help me reignite mine.

When I looked in the mirror and said that God could fix this whole issue in a heart beat, I believed that to be true. What I feared was that while he could, he wouldn't. I mean, if two football teams are praying to God before the big bowl game to win, and only one does, did he ignore the other even though they prayed? That may seem trite or juvenile, but I was afraid to get my hopes up. Not only that, I was afraid he'd let you down, too.

See, when Angelique was pregnant with Bella, I prayed on my knees almost every night offering a prayer of thanks for a healthy baby growing in her belly. I was so confused when Bella was born with EB. "What did I do wrong?" I thought to myself, regarding prayer. I figured I just didn't pray hard enough or often enough... or the "right" prayer, whatever THAT was. I must not have done it right. So, ever since then, I've been afraid to jump in with ALL my faith and hope. I've kept one foot in man's world trying to control things here on the ground. I have written about this many times before... my attempt to control the outcome, and how poorly it's turned out.

On Thursday, I surrendered. I mean I REALLY surrendered. Like a trust fall. Once I leaned back, I felt myself being caught. Since then, I've felt no need for the docs; like they don't have the key to Bella making it. The key lies outside of her room, outside of Unit 5C, of a children's floor, at a teaching hospital, in the midwest, of the United States.

This is not to say that I think we can just walk home with Bella tomorrow. No, that would be silly. The point is, we reached a point in Bella's care where we weren't even maintaining, or buying time, as one ICU doc explained his job to be. We were losing. Losing Bella. We were no longer just keeping her afloat. She was sinking, and the docs didn't know what else to try, so they didn't do anything for 2 days. Bella just floated, down, down, down. I watched in anguish as her blood pressure dropped, and dropped and dropped.


It was then that I started to turn my power, the docs' power, the machines' power, the medicines' power over to the collective energy of what I call God, and to you, Bella's online family. When I started reading to her your comments, I realized you believed more than I did! YOU brought me back from the abyss! In my darkest moment, you were the light I followed out.

(P.S. my computer battery strength read 20% 10 minutes ago. I just looked up, and it now reads 44%. I think God wanted me to go off on this tangent! LOL)

Bella getting to "lay up" a little - I don't think I can quite call it "sitting up" just yet, but it's a start!

So, having said all of that, let me tell you that when I walked in this morning, Bella's dialysis line STILL wasn't working, and she had a fever of 102.8. She had a clot in both her left and right internal jugular veins, her left subclavian vein was still collapsed, and she still had a blood clot in her liver. I stood in the circle as the fear and 'crushed' feeling bounced around the circle from person to person. When they read off how many clots Bella had, I felt my grip starting to slip. I felt the slightest sensation of dizziness, and fear. Why? I tried to understand why she had all these clots, and for a moment, I believed the group that it was serious.

It was an awful feeling, so I stopped feeling it.

I realized in that moment that I feel things, they don't feel me.

Circumstances and situations don't have feelings. We do. We place feelings ON TOP OF situations and circumstances. How can I say this? C'mon, ever known two people that do the same job, but extract different levels of joy and satisfaction from it? Why? It's the same job after all? Because THEY, not their job decide - CHOOSE - how they feel about it.

This morning, it was as if I had quit drinking, then had a sip and remembered how awful it made me feel, so I didn't have another sip. I chose not to drink any more of the dizziness or fear.

I began to get ready to go to surgery by hitting the men's room, and when I returned, I donned Bella's pink swim suit head gear to lighten the mood. Call me Patch Adams, but being silly on a peds unit and making people smile and laugh - even if it's at me - is a useful thing! Luckily, I had taken off the hat when the surgeons entered the room. The surgeon looked at Bella's shoulder, and explained that the catheter had moved quite a bit since it was placed due to her posture, getting tugged on, and the amount of fluid she has put on. So, he positioned a little ball of wash cloths under her right scapula (under her sheet - mind you) and pulled back on the syringe, and just like that, the line worked!

I put on my "rally cap" to raise spirits on the unit after rounds, before the surgeons arrived.

We went back on the circuit, continued to roll down the amount of pressers Bella's on, and began PULLING FLUID OFF BELLA TODAY.

All day, I read your comments to Bella - especially when we were going back on the circuit. I just sat with my back to the small army of docs in the room and ignored them and the monitor and the machines and just concentrated on using my voice to recreate your words in the most loving and intimate way I could - as if YOU were there actually saying them yourselves. It was just your words, my voice, and Bella. I do not know how many people ended up in the room at the busiest point; there were SO MANY COMMENTS to read that I must kept going, and going, and going, and ended up in a bit of a trance myself.

In the bubble... didn't know this picture was taken till I uploaded them all to my mac!

Funny part of the story - our new resident Maggie (who is totally and completely AWESOME) told me later in the day that I was reading the comments "don't let those docs" this, and "those docs don't know that," and the room was FULL OF DOCS! LOL. We actually had a good laugh about it.

YOUR wall... begun!

Oh, and your comments look SO BEAUTIFUL all over Bella's wall! More are being made as we speak. My poor friends Dayna and Amanda have their work cut out for them! Dayna came up with an AWESOME idea! Please download and print off the butterfly picture below and have your kids (or anyone for that matter - but especially kids) who know Bella to write/draw/color a note for her that we can hang in her room as well! We know there is a whole army of children worldwide who have come to know and love Bella through their parent's story telling and the pictures online. We want their voices to be heard as well! When they are done, mail them to me at 621 Oak St. SE Minneapolis, MN 55414. Make sure to write on them who they're from and where you live. Thanks again, Dayna, for such a great idea!

Dayna's sister-in-law, Amanda dropping by with your cards!

Many thanks to you for your love and support. You have saved me. You have saved our Bella!

God night.

P.S. For those who live outside the U.S., I apologize, Bella's book is not for sale, but you can download it for free on the sales page as a .pdf! I set it up that way myself, so please feel free! Get it? Feel free? Oh man, I better quit now...

Check out the photo on the computer... Creature of habit?

Saturday, September 25, 2010

September 25: Day +85


Wow. What a moment. Picture me standing next to my bench this morning looking out over downtown on my way to the hospital. It is at this spot that I used to read your comments (when there was 5-10 a day), then talk with God about the day. This morning, my prayer to God was this: Please, God, don't let yesterday's blood pressure be a fluke.

Here is what I walked in to...

My heart jumped and my spirit just soared around the room. I have never felt so 'light' as I did this morning walking in to this scene. Remember, at the beginning of the week, Bella could hold her blood pressure up while she was awake, but it would TANK when she fell asleep. Well, this morning, she was comfortably in a deep sleep, and her blood pressure was ROCKING!!!!! We are already on less then half the phenylephrine we were on just 2 days ago, and just one step away from completely D/C'ing her precedex!

Even though there is some discoloration, her left leg has never looked the same as the right leg, until now.

The change has been no less than a miracle in my book. From my family to you and yours, THANK YOU for being the CAUSE of the miracle. It wasn't until we started reading your letters of support to Bella that things started turning around. I was reminded of the scene in Ocean's 13 when they read to all the letters of positive affirmation to Reuben and he makes a dramatic recovery. I know it's a spoof movie, but it has really worked with Bella! Just this afternoon, Bella's pressures started to wane a little, so Angelique read to her today, and sure enough, BOOM! Back up it went!

Ali coloring the tape to help the dialysis nurses see where the Prisma circuit needs to be after they are done.

In other news that's not so hot, Bella's Prisma circuit crashed today after only being up for 1 day. Turns out there was/is a GIGANTIC clot in her dialysis catheter. That's the one sticking in and out of her right shoulder. They had to take her off the circuit, and the are putting TPA in the lines overnight to try to break up the clot. If it doesn't clear by 6 am, we're heading back into the O.R. first thing tomorrow morning to get a new line placed. Let's hope they clear the line; no one wants another trip to the O.R. if we can avoid it.

So: visualization/meditation/intention/prayer request #1: No clot tomorrow morning.

Outside the hospital walls, we took a trip on the Minneapolis queen riverboat today, and got to go through a locke. That was cool! Being in essentially an elevator powered by water for boats is an awesome thing to behold. I am not of the engineer mindset, but a locke is definitely the stuff of Modern Marvels (although someone is bound to tell me lockes have existed for millenia). Ali had mixed emotions over the trip. I think it's because she had a hot date with Collin afterward and wanted to get to it! LOL.

Check out the kids' ramp and bumpers for the gutters! Kid - Friendly Fun!

So, after the boat, we brought mommy back to the hospital to take care of Bella. Ali and I went to Collin's home and we all went bowling, then Deb and Spence invited two other families over and we had a big party that included dinner and a camp fire! It was awesome. The Kerstens are just an amazing family, and their friends couldn't have been nicer. It was so nice to sit around and joke and laugh and be in a normal setting for a change where the stakes aren't so high. It was r-e-l-a-x-i-n-g. For that, I am so grateful. Plus, to watch Ali just beam throughout the afternoon and evening while playing with the 5 other kids there... magical. Ali is truly a magical little girl. She really hits it off with Collin's daddy, Spencer, and to watch the two of them together is really sweet.

We really didn't want to leave, except Ali was so tired, and I knew there were more than a handful of YOU ALL that were waiting for the blog to post! :) I am so beat from a fun filled day that I wanted to skip posting and go to bed. However, you are too important to Bella to skip out on, even for one night. I made a pledge that I would update every single day we were here, and I expect myself to live up to that pledge. When we were reading other blogs of Rafi and Sam while we were considering coming here, I hung on every new update to help me decide whether or not this was a good idea.

Know what? After 83 straight days in the PICU, I still think it was a good idea. Look at the waves Bella is sending out throughout the world?

God night.

Friday, September 24, 2010

September 24: Day +84

Hands in Hands... Bella getting to hold mommy and daddy's hands...


You know what over 240 comments in the past two days causes?

A miracle.

I walked into rounds this morning, and the resident explained that not only did Bella's blood pressure continue to be AMAZING after we left last night, but that is was SO good, that they - get this - weaned her phenylephrine overnight by 20%! She tolerated her precedex wean over night, and was doing phenomenally well.

Just then, Dr. Doom himself actually SCOFFED OUT LOUD and said, "[scoff] surprisingly well." Seriously!

Hey, every great story needs an antagonist, and if his role in this cosmic game is to continue to act like a j#$^*#ss, then so be it. In fact, THANK YOU, Dr. Doom, for playing the role of antagonist. Thanks to you, you have GALVANIZED the world's intentions that Bella be well not only to witness a miracle, but to spite you! I'm serious. I am grateful for the fire that has erupted in me and you, due to his dim prognosis yesterday. Sometimes in life we marshal ourselves into action for the noblest of reasons, and sometimes it's just to prove someone else wrong! Whatever the reason, if it works, that's what counts! Maybe he pissed off Bella talking about her negatively in the third person while standing over her bed. If that is the case, I am sincerely grateful for him.

To be fair, here is the other reason I am grateful for Dr. Doom. (I just can't stop calling him that - it just has such a funny ring to it...) This is the REST of the story I wanted to tell you yesterday but couldn't because my computer battery died before I got the chance...

Hopefully all of you realize I published a book in March about Bella's first 3 months of life called Bella's Blessings: a Humble Story of Providence. After realizing on Bella's third day of life that her hospital was located on Providence Street, I began to consider that Bella was here on a mission, and that God was guiding her journey, and providing support for us in ways we couldn't predict. Once I began to look for God's blessings and signs of providence, they started popping up all over the place. So many, in fact, that I had to write a book about the experience.

Anyhow, the rest of the story is another chapter of providence for you. It goes like this:

When Dr. Wagner and the attending BMT doc returned to our room yesterday afternoon, Dr. Wagner recounted the following story. I will try to quote him directly, but some paraphrasing will no doubt occur, so here goes:

"I was talking with Dr. Doom about Bella's case last night before turning over my patients to him, and when I explained to him that Bella was dealing with a capillary leak issue, he mentioned that he had just read an article in the Journal Blood about this very problem. In the case study, a BMT patient with a very similar history and problem set as Bella was given the drug bevacizumab and it turned their hypotension around almost instantly, like within a few minutes or hours. What makes it such a coincidence is that if any other doctor had been coming on, we wouldn't have had this same conversation, since it was Dr. Doom here who read the article in the journal..."

Where some see coincidence, I see providence.

Didn't Morpheus say that in The Matrix: Reloaded? :)

I smiled and let him have his coincidence. I don't believe in coincidences. Regardless of what the truth about them might be, I prefer to see them as providence. It lights me up way more to think that there is a loving God out there overseeing all of the universe, who from time to time lays out clues, tips, hints, and little morsels of support along the way in each of our respective games of life we are all playing. Now, THAT sounds like fun! I like to think of life like a game, and it makes the game fun for me to think of it in such a way. I look for clues and hints, and because I have faith they are there waiting for me, I always find them. The catch is that sometimes they don't LOOK like opportunities for growth or support or the helpful hints I think I want or need. Sometimes, they disguise themselves as problems, struggles, even tragedies to make it much more challenging for me. I find that the better I get at the game, the bigger the obstacles that show up. Like any game, the better you get, you increase your difficulty level to challenge yourself. So, you can see inside of this paradigm, I am humbled that God thinks I can hang at this level by assigning me the role of Bella's daddy. What a game, indeed! Let's just say that I'm having to dig pretty deep on this level and I've definitely broken a sweat! :)

So, throughout the day today, I read YOUR comments from yesterday and today to Bella while holding her hand. It was magical. To be reading them to Bella at the same time as reading them to myself was such a treat. The way you all shared yourselves over these past two days... Something has shifted drastically in the way you share. You now tell us about YOU... Your struggles, your triumphs, your passions, your pain. As a result, we feel an intimacy with you that we cannot believe is possible through this medium, yet is. As people came in the room today, they were blown away by the stories you shared with us. They were all so inspiring; I know that I could feel the energy from your written words come alive in me as I breathed them into the room. I could feel the energy surge down through my arm and out through my hand, pulsing as it transmitted your love and energy into Bella's hand and arm. It was extraordinary.

YOU TOUCHED BELLA TODAY. Physically. Powerfully.

So much so that her blood pressure has looked STELLAR ALL DAY today... EVEN WHEN SHE WAS NAPPING!

Those top 4 waves are what we are following... pay no attention to the red box at the bottom.

We are all walking inside this miracle together, right here, right now. We are making it happen with Bella, together. We are in the middle of a world-wide communion of faith, love, passion, belief, compassion, generosity, support, and family. We are one family united for Bella.

We are Team Bella!

Thank you for being a part of this team. Yesterday and today happened the way they happened because of all of us, even Dr. Doom. See, I told you I am grateful even for him! All of this happened exactly the way it did because YOU showed up. If you hadn't, the experience would not have been the same. In some way, even at the quantum level, it would have been different. But it isn't. THIS IS IT.

The added blessing of the day was when Angelique walked through Bella's door at around 9:30 this morning! My phone was turned off charging, so I didn't know she was coming. She told her boss that she needed to be by Bella's side today, and her boss was AWESOME enough to let her take the day off and covered everything for her! We are so grateful for her employer, Verizon Wireless, we can't even tell you! It was sooooo nice seeing that beautiful woman stride through Bella's door! I instantly felt ten times as strong. Angelique and I have always held on to the premise that together, there is NOTHING we can't do. I instantly felt that power from her presence and knew it would be a good day, a special day, and it was.

So, the wall of cards is going to be constructed! I assembled some of the pieces today and have a team of friends here working on it over the weekend. I can't WAIT to have YOUR words of love and support SINGING OUT from every inch of wall space in Bella's room! You wrote that Bella is with you throughout every day. Well, now you will be with Bella all day, every day! Collectively, we are healing Bella. YOU are co-authors of this story now. There's no turning back now!

This is one of my childhood friends Bonnie, and her Hubby Brett and son Sidney. Brett drew this picture on their kitchen wall the day Bella got her Trach. She asked that I post this on Bella's wall in addition to the comments. Do you have a picture or card YOU want to send? Send it to or snail mail to 621 Oak St. SE Minneapolis, MN 55414.

Tomorrow, we'll continue the sedative wean as we did twice today. Every 12 hours we wean one of her sedatives by 10%. Bella is tolerating this very well right now. I'll be in morning rounds, no matter what time they are, then it's leg dressings, trach cleaning, and ulcer care. Ali and mommy are attending a "pet parade" in the lobby in the morning, then we're all going on the Mississippi Queen Riverboat for a 90 minute ride up the river! Ali has seen the fake one at Disneyland numerous times, now it's time for the real thing! Then, Ali has a play date with Collin again while Angelique stays to support Bella. We want to have more mommy and daddy coverage THIS weekend to keep her spirits up as she turns this important corner.

It's Bella's neck! I know! I haven't seen it much lately, either!

Thanks again, but don't stop now! What do YOU want to say to Bella that you may not have said yet? I PROMISE I'll be reading her comments to her every single day from now on.

Someone make me a sweatshirt that says, "Bella's Mouthpiece" on it. I'm a size Medium ;) That'll drive the docs NUTS! Angelique just said that she would LOVE it if I showed up every day in a sweatshirt that said "Bella's Mouthpiece" on it! Seriously. If you want in on the fun, 1st one to comment "I'LL DO IT!" with their email address wins. Okay, that's enough shenanigans for the night. I need sleep!

God night.