Ava Update

Last week, after 5 hours at the ophthalmologist, we confirmed that Ava has cortical visual impairment. While her eyes are functioning, her brain is not properly processing what her eyes are seeing. We can't tell what, if anything, she actually "sees". This isn't a surprise to us since most of her development has stopped since her seizures began. So we rub noses, kiss her cheeks and sing songs in to her perfect ears. Her awake time is limited and our glimpses of her eyes are rare. So we massage her and move her joints, rotate her in bed and try to put her in as many "normal" positions as possible - that way, if any development is occurring, it won't be lost. Today's lab tests didn't provide any answers as to why she's so sleepy, so if she doesn't wake up more over the weekend we'll get admitted next week for an overnight EEG to see if she's having seizures we aren't detecting.

Beautiful Blue Eyes

We're not sure what it means, but we'll take it! We love our little girl having awake time!

St. Louis Weather Schizophrenia

In the past week or so, we've had quite the weather here. Snowing one day...

...65 degrees the next. I'm just thrilled to be experiencing it all from home and not watching the changing temperature from the hospital window. We've been trying to make the most of opportunities to go outside, snow or shine. Now that Ava's home, it's a bit easier. The girls were thrilled to get to go to the park together...I believe it was Ava's first trip! Unfortunately I didn't get a picture of Ava before she threw up all over sweet Miss M and herself.

These days, we're not taking any family time together at home for granted.

No admission!

She was home by midnight and had a good day today. We're hoping this bodes well for a weekend at home. Thanks for your prayers!

Working "The Plan"

When we left the hospital last week, we had a plan in place that would hopefully keep Ava at home as much as possible even if her seizures continued. After increasing seizure activity over the last few days, we had a conversation with our Dr. and got the go ahead to do "the plan*". We gave Ava rescue meds this afternoon and though she responded well at first, her seizures returned, so tonight we had to bring her to ER for more substantial intervention. So far, she's obeying her daddy and following the bullet points exactly. The big girls are tucked in at home and we're praying Ava Bean escapes without an admission.

*The (official, but constantly changing and could at any moment be completely tossed out) Plan
*when we see a ramp up in seizure activity:
1. try rescue meds at home
2. drive her to the ER so she can get stronger IV meds
3. if she responds well (seizures stop, and she stays out of respiratory distress) we can go home!
We're at step 2, and step 3 is looking hopeful.

We took these pictures a few nights ago...the big girls were so excited finally get Ava in on the matching Christmas Pjs



Don't you just want to be part of that hug??



She's pure sweetness.

Maintaining

We're still at home. Ava is still having small seizures, but she is adjusting to her new diet and we're continuing to tinker with her medication levels, and so far we're able to stay at home! I have a number of posts rumbling around in my heart, but no time to write yet. I'll plan to post a more thorough update by the weekend. I just wanted you to know we're hanging in there and aca's still home!

On our way!!

Possibly...

Home today! Still waiting on discharge paperwork, but we've got all her new prescriptions, we've received training on her Broviac (the port in her chest), her MicKey button (gtube) and making her formula at home. So since she hasn't has a seizure in 48 hours, we are hopeful that we can get a few days at home seizure free. As wonderful as discharge is, it would be really difficult to head home only to come back and get admiitted in a day or two. Right now we are in a bit of a routine, and as difficult as it is to stay, the upheval every time we come home and then leave again is real. The big girls feel it and Matt and I feel it. So we continue to pray for a total end to her seizures and the hospitalizations that accompany them.

We are so thankful she's stable, she's a little more alert and stable on the ketogenic diet, though it could still be weeks or months before we know if it's having any impact on her seizures. We don't know how long this calm will last, but we're thankful for what we have today. Thank you for all the support, all the emails, comments, texts, generous contributions to our nanny fund and meals. We simply could not have survived this admission without your ongoing and tireless practical help and prayer support. We're beyond grateful.

Our Keto-Kid

On Saturday morning, Matt and I finally felt confident enough to choose the next steps in treatment for Ava. We won't know more about the abnormal masses in her brain until we get another look on MRI in a few months. So until then, what we can work to address is her epilepsy.

Here are a few facts, without getting too technical:

Most people with epilepsy (around 60%) will get control of their seizures with the introduction of one seizure medication.

Another 30% or so will improve with the addition of a 2nd medication.

The remaining 10% have what is considered "hard to control epilepsy." And no matter how many medications you throw at them, they're not likely to get seizure control. That's the group Ava's in. So the last glimmer of hope for these folks is a treatment that has re-surfaced in the the past few decades: the Ketogenic Diet.  It mirrors the Atkins diet (high fat, very low carb) and forces the body to metabolize fat instead of carbohydrates for energy.  This state is called "ketosis" and for centuries has proven beneficial for seizures.

On Saturday at 10am, Ava started receiving ketogenic formula under the supervision of her doctors.  Her diet is carefully monitored by a dietician and measured out on a gram scale by her totally conscientious mother. (YAY! finally a use for my gram scale besides measuring ground beef to the perfect pound!) We'll also need to restrict her from lotions, baby medications and diaper creams....which also contain carbs...did you know that??

So here's what we're waiting for:

*Her body will enter ketosis (as indicated by a urine test at every diaper...we're getting close)
*Her blood sugar will drop and then bounce back (not quite yet, though it's dipping)
*Her blood will get acidic and then level out (not quite yet)
*Over the next month, we hope to see a positive change in Ava's seizure activity...though this can take up to a year.
*1/3 of folks will see no change, at which point, if that's Ava, we would stop the diet.

But from where we stand, in the very best case scenario, once her body enters ketosis and her blood dynamics level out, we can go home...yep! HOME! But first she has to stop having hour-long seizures like she did yesterday and today. Both required serious rescue meds, so we can't leave the hospital until those cool off. We see a glimmer of hope about the end of the week, but it's just that...a glimmer.

First, we've got to get Ava into ketosis...go Ava go! and the prolonged seizures (heck - ALL the seizures) have to stop!

THANK YOU for your prayers. Despite Ava's continued seizures, Matt and I feel at peace with the direction her treatment is heading.

Lamentations

It was June of 2005. I stood in a sea of attendees at a conference to equip church worship leaders. The conference had been a mix of new insights and powerful encouragement, as well as painful moments of feeling isolated and alone, having only recently received the diagnosis for the baby I was still carrying. I smiled when people congratulated me on my bulging belly and wished with all my heart my feelings about the future were only filled with hope.

I stood in the last conference session on the final day when the words floated out to me and I was undone.

I was sure by now, 
that you would have reached down and wiped our tears away
stepped in and saved the day
but once again, I say "Amen," and its still raining.

As the thunder rolls, 
I gently hear you whisper through the rain, "I am with you."
And as your mercy falls, I raise my hands and praise the God who gives and takes away.

For the first time, I had a way to worship IN and THROUGH my pain and not in spite of my broken heart. As the music played I felt free to run to God with my sorrow over Elizabeth's diagnosis and let him meet me where I fell. Matt and I listened to that song dozens of times in the next days and months and it was a lifeline between God and me during some of the darkest moments of my life.

Lamentations

Songs which enable me to express my full range of grief, sorrow and despair in the safety of surrender to a loving and sovereign God.

They remain an integral part of my worship to this day and I am indebted to the artists who have shared their personal struggles through music and lyrics, giving us language for the days when there simply are no words.

**********

I know some of you have walked your own painful journeys. These are a few of the songs that have rescued me from despair time and time again. All are available on iTunes and many can be viewed on YouTube. If you have favorites of your own, we'd be so grateful if you would leave a comment and share.

Praise You In This Storm ~ Casting Crowns
When the Tears Fall ~ Newsboys
Lord I Run to You ~ Tommy Walker
Desert Song ~ Hillsong United
Blessed Be Your Name ~ Matt Redman
Part the Waters/I Need The Every Hour ~ Selah
Show Me Your Face ~ Brian Johnson
Gratitude ~ Nichole Nordeman
I Bless Your Name ~ Selah
Held ~ Natalie Grant
All My Praise ~ Selah
Your Hands ~ JJ Heller
You Are Sovereign Here ~ Stephen Miller

Funny Business

Ava did not have a great night last night. Yesterday she dropped her heart rate for a few minutes, overnight it was her oxygen saturation and this morning she had a two hour seizure which meant she didn't get her scheduled EEG to check her brain for subclinical (not visible to the observer) seizure activity. She did get rerouted to to a CT scan however, and the preliminary results look fine.

It's difficult to see her regress after a few wonderful days. We know many of you around the world are gathering in your various homes to pray for Ava and our family tonight, so we wanted you to know the latest...the fight continues!

In other news, our sweet Miss M is back and feeling better, and after having two days of fevers, Elizabeth appears to have rebounded without a hospital visit! Quick, somebody write that down! Ruby and Hannah Mae are still fighting colds (tis the season!) which means they can't come visit Ava and so we continue the hospital home juggling act.

All of this is in His hands. We so appreciate your prayers!

Recovering Beautifully

She's waking up. She's making some eye contact. She's cooing. She's showing us her dimples and seems like she wants to smile. She's resting in our arms without constant involuntary movements. She's drinking from a bottle. She's trying to follow a toy with her eyes.

Ava is waking up.

It could be the changes we've made in her medications.

Or it could be that God is healing her brain.

Nothing, you see, is impossible with God.

Plan for the Day

Ava had a peaceful night in the PICU. In fact, she looked so good coming out of anesthesia that once she got settled in and we made sure her nurse was "the hovering type", Matt whisked me home so we could both get a good night of sleep.

Today, these seemed like attainable goals for all of us.

The preliminary biopsy readings are, at best...not devestating, and possibly hopeful. How's that for hedging??

Her MRI still shows lots of problems with many areas of her brain. So the biopsy was necessary, and while they were in there, they collected a small piece of the muscle in her temple, because that might give us more answers, and doing it now might help her avoid another sedation.

The first glance at the tissue samples seems to indicate the tissue they collected is not an agressive cancer tumor. However, that doesn't rule out the possibility that the tissue still in her brain could become cancerous, or that there is already cancerous tumor growing elsewhere in a different part of the tissue that we didn't collect...thus, we are not devestated, and moderately hopeful!

We have to wait for the final reading which will happen in a number of weeks to get anything concrete. Even then, what they're seeing in Ava's brain is so rare, the "results" may be simply labels, without clear treatment or prognosis information attached to them.

So yet again we wait, we rest, we continue to trust our Ava Bean into God's capable hands, and thank him for her every breath.

We decided Ava could use extra support while she recovers, so we wrapped her up in her sister blanket. Some friends (thanks Schneidimotos!) sent it to us when Hannah was born, and it had the three girls names on it. We added Ava's and now it's a perfect!

Thank you for all the prayers and support.

MRI...check! Biopsy...check!

Now we're just waiting to see her in the post-operative suite!

Thank you for your prayers and all the emails, texts and comments here on the blog. I can't tell you how buoyed we are by your expressions of hope, love, faith and encouragement. We have even made contact with two other NICU family friends who are also in the hospital right now. With all the love near and far, we know we're not alone and that is such a blessing.

Ava's biopsy went well. The surgeon got all the samples he needed and she had very little bleeding and so far no other complications. They sent off the samples and we may get some preliminary information this evening. We're on pins and needles, but can't make anything go faster. She'll stay in the PICU tonight for observation, then it's back up to the Neurology floor for her to recover for a few days while we make the plan with the team. We'll likely be here through the end of the week. Beyond that, we've learned not to make plans.

Every breath is grace.

Yet another BIG day for Ava

Tomorrow morning at 7:30am, Ava will be wheeled back for a "stealth" MRI, followed by a brain biopsy. She'll need to be sedated for both procedures, but they'll occur 6 floors apart so she'll be "bagged" while they wheel her between floors. Both procedures are considered minor, but the whole morning is a big deal for us. Please pray for Ava's safety during sedation, transport and the procedures. And if you have the faith to believe God can do a miracle, would you pray that her MRI would be perfect and the biopsy would be unnecessary??

During the MRI they'll be getting coordinates so they can aim perfectly for the biopsy. The biopsy will require a craniotomy, and the neurosurgeon will be removing three different pieces of abnormal brain tissue for testing. We may get preliminary information, but it's unlikely we'll get definitive answers sooner than a few weeks. Please pray for Dr. Smyth's hands and protection of Ava's surrounding brain tissue. Please pray for clear information from the biopsy and wisdom for Matt and I as we work with the doctors to decide what to do with the information once we have it.

Meanwhile, Miss M has a stomach bug, so she's gone to recover and we're reworking things for tomorrow so Matt can be here too. Please pray for wellness for our sweet helper!

One moment at a time, God provides.

We wait. We rest. We depend. We trust.

And we take big, deep breaths.

A Change

After a long travel day on Saturday, I got the girls wound down and tucked in bed and drove up to see Matt and hold Ava into the New year. She took my breath away. She was so beautiful, and so painfully still and unresponsive. I wondered in my heart if by going to California I had lost the chance to ever see those blue eyes full of life again. I held her and prayed she could feel my love for her.



On Sunday I arrived while she slept on. I struggled with despair. It was one thing to pray for her from afar, but to hold her close and see the reality and horribleness of her situation filled my heart with such an ache. I cuddled her close and talked to her, willing myself to treat her like a healthy baby who could sense her mama was close. I turned on my favorite playlist of worship music and let it lift me from my discouragement.

Then she opened her eyes.

And coo'ed!

I held my breath. And she yawned.

Her tired eyes flitted around the room and she even seemed to look at me a few times. We sat like that for two hours. The shutter clicking, relief and gratitude filling my soul.

God is not finished yet! We're still in the fight!

Together at last!