The dance of hope and despair

So the journey to date since Chaia was 2 and a half months old?

Hard things...asking God to inject hope...more hard things.

We see progress in an unexpected area. Then hope is tainted with tough news in another area.

That's how you end up connected to cardio, genetics, neuro, ortho, pt, ot, nutrition, GI, and the list goes on and on.

One win here. Two heartbreaks there.

So this week was viewed as a mixed bag honestly. So long ng tube (nasal tube) and hello g tube. The g tube has some huge wins...we get to see her face and no one will know she has had quite a road just by looking at her. But it also means we're losing the battle to eat and to get nutrition needed to thrive and grow.

So Shaina and I did the typical pre-hospital bracing ourselves. We'd find out for the first time since September how her heart looked (echo) and how her calcifications in her arteries looked (ct scan).

We haven't been on treatment for the disease since September.

There is a sinking feeling...almost a terror of heartbreak that comes over you as a parent when you watch them put a mask on your kiddo who is kicking and screaming and she goes from fighting with everything she has to seemingly lifeless in a matter of seconds.

Zero control.

A couple hours later, Chaia is yelling "mommy". I'm not ticked. I want my mom in those moments too. I'm good at chasing and playing and building tents and making diaper changing time more entertaining...I'm not as good at making a scared and hurting little girl feel safe and comforted. I taught Chaia to shake 'owies' off. Shaina kisses the 'owies' away. I wonder if those two images are compatible with how God walks through pain with us. Sometimes endurance. Sometimes comfort.

It took a little longer than usual but the turning point for the munchkin was around 4 a.m. this morning when she stirred, started whisper-screaming and tapping mommy's face to wake her up. "Mommy...Mommy...Mommy!" Shaina wakes up. "Elmo...Frover...Zizo" Apparently 4 am is the perfect time to watch Elmo, Grover and Zoe videos.

Hopeful thing one: Chaia bounced back.

She had an ultrasound of the vessels in her brain. There is some concern because her front two main vessels are either completely blocked off or significantly blocked off. But the neurologist is fascinated that her back two main vessels are double the size of normal. So she is getting adequate blood flow (what a typical person gets from 4 vessels), but she is doing it through two vessels!

Hopeful thing two: Everything is stable in brain vessel land. Hope hasn't come in double doses on this road very much.

So the bottom will fall out right? Murphy's Law? (I've applied for the renaming rights of this Law to the Thompson Effect!)

So I walk in this morning at the same time as the Nurse Practitioner for cardiology. She's pulling up the Labs, the echo results and the CT Scan results.

Labs are solid...her calcium is 9.8 or something. I don't know what that means...But she said its normalized. Her calcium has virtually never been normalized...Heck, the kid has virtually never been normal either.

Then the echo...still some major dysfunction...particularly in the left ventricle...but the notes said "quantitative and qualitative increases in heart function". Now that can tickle your ears and get you really excited. But Shaina and I are seasoned veterans of this hospital jargon. "Wait a minute. What do we mean by quantitative increase?" I ask. The two metrics that they pay attention to in an echo are shortening fraction and ejection fraction. The shortening fraction in a normal range is 18-42%. Chaia had a shortening fraction of 11% in September. It is 25% now. "But the ejection fraction is the one that really matters...what is that one?" I said, knowing the crushing was almost upon us.

The ejection fraction measures the percentage of blood the heart pumps out per pump. (The heart takes blood in and then pumps it out to the body). The normal range for a female is 55-75%. Chaia's EF when she was given five days to live was right around 10. It made it up to the high teens and low 20s and plateaued there since she has been out of the hospital. She's grown a bit and is wayyyyy more active so the question of how much this increased activity will tax the heart was something we wanted to find out through the echo.

Her EF today? Low to mid 40%s! Double what it has been at any time since the heart attack!

Hopeful thing three: Her heart...Ezekiel 36:26...actually happening!

But the disease that caused the heart attack. The disease that causes calcifications in all of her major arteries. We tried three different experimental treatments. None showed any signs of helping and they caused a really lousy quality of life. We've been off treatment for the disease since September. As best as we can understand, the treatments not only didn't help the calcifications, but also gave Chaia a brittle bone disease that caused fractures all over her body.

Taking her off the treatment helped her bones to recover (which is why we've finally seen her grow a little bit in the past months). But the treatments had stabilized the calcification disease. So no treatment...means risk of disease progressing. Our prayer was that without treatment, the calcifications would remain stable.

In two of three areas, the CT scan revealed that the calcifications were indeed stabilized.

But in her coronaries they hadn't stabilized.

The report said the coronaries had "integral decrease of calcifications".

That's doctor speak for $#%@%$^!!! The calcifications are reversing!!! #$%#$%!!!

We don't know what all this means in the long run, but something remarkable and miraculous is happening in this kiddo.

And for today, it is not about surviving or enduring.

Today is about hope...hope that doesn't disappoint.

Hope that trusts the light even in the dark places.

Sure there are a million challenges and obstacles in Chaia's care...in our life as a family...in the continuing story of City Campus Church...as well as in your life.

My message for you in a world that seems to often be one step forward, two steps back:

Keep going my friend.

Despair doesn't have the final word.

The hope you can find on the other side is the most liberating/intoxicating thing in the world.

It'll mess you up in the best way imaginable.

We're living proof.