Slides & Such

Havyn & Ava Gray love getting outdoors. Their favorite lil' place to go is a nearby school (early in the morning before the weather gets too hot). Here's a moment from one of their recent outings:

8:35am: Official Discharge From the Hospital

Home. : ) So happy about that! Unpacking, settling in, praising God.

Will try to post some fun pictures soon...

-Jules & Co

And Back Again

Friends, after a day (and a bit of a night) of celebrating Ava Gray's return home, we spent the next day watching her closely. She wasn't acting like herself (a little lethargic, a little uncomfortable, & a little bit of emesis). This morning we realized that her fontanel had filled in again (very quickly overnight!). So we packed everything up and headed back to the ER first thing this morning. The good (no, GREAT) news is that her shunt seems to be working well (at least for the moment). We've learned that shunt babies need to sleep on some kind of incline (as gravity plays a part in how well the shunt works). Did not know that before! Though her neuro team has scheduled a surgery for her tomorrow, they (and we) are hoping that after observing her overnight, that she will be able to go home without needing it. We will keep you posted.

Tired but hopeful,

Jules & Co.

Unexpected Joy

Friends, I'm feeling a little incredulous even as I write this to you.....Early this morning they did another tap on Ava Gray's shunt. The pressure was completely normal. They have cancelled her surgery, and are sending her home today. I am overcome with how much her Heavenly Father loves her. He loves her this much even when He walks her through suffering, but it is so sweet to see His heart for her in this gentle and miraculous shielding from suffering... He did it, He did it, He did it!

I am so glad there are no "what if's" in His world. Like, "What if Dr. Tulipan had been available to do her surgery yesterday?" (she would be bandaged up and groggy with pain medicine right now). God knew, and He took care of it. 

I'll keep you all posted. Thank you for praying - in Peru, Colombia, PNG, Australia, US & elsewhere! You are such a beautiful part of Ava Gray's story.

With joy,

Jules & Co.

A Few Answers

So the surgery is scheduled for tomorrow at noon. Until then, the goal is to keep lil' AG out of pain. Her Heavenly Father has mercifully kept the pressure at bay this morning. She is sleeping/snoring beside me with her little lips & tongue twitching every few minutes to show she's dreaming. Ana has Havyn out for a long walk (and hopefully a little nap-on-the-go). We have a wonderful nurse, Danielle, who had Ava Gray a few hospitalizations ago - we really like Danielle.

In case any of you were wondering what I was wondering (since they're going in anyway, can Dr. Kelly do his follow-up at the same time, so AG can just have 1 surgery, vs. 2?), the answer to that is no. The neuro team feels it's too risky to have any extended surgery while her brain and spinal column fluid are exposed. That makes sense (but aww shucks, it sure would have been nice to do it all at once!).

For now I am listening to Ava Gray breathe in and out & to the words from Sandra McCrackens' song "I Can't Help Myself." Both are conduits of grace......

Can't Help Myself  

I confess the things, I am afraid of

Thorns and danger just around the bend

I pray for tongues of fire and bands of angels

To come and circle 'round me like a fence

Chorus:  I lift my eyes to the hills,

where comes my help?

I lift my hands, empty hands

I can't help myself, can't help myself

No, I can't help myself

My enemies surround me like an army

Within without the battles raging on

I pray the spirit would be strong and mighty

For courage through the night until the dawn

Chorus

Oh trust the lord, my soul and all that is in me

Oh trust the light to show my darkest parts

With wounds of truth and love, a friend who has known me

A fool would keep his secrets in his heart

Chorus

Hanging Out at Vandy

Friends,

Ava Gray is now up in the ICU (Room 5533, 5th Floor), and she is just relaxing, chewing on her fingers and starting to fall asleep after talking to me for a while (how she can sleep with all these beeps and alarms going off around her head is beyond me!☺). 

Soooo, early this morning around 3:45 am they tapped her shunt again (her blood pressure was up & she was vomiting d/t pain, so they knew something was up): her ICP (the pressure in her head) was even higher than it was yesterday in the ER: over 50. After the tap (where they take the extra fluid out while they're checking the pressure), Ava Gray feels wonderful again. It's sweet to hear her talking quietly to herself & opening up her eyes wide & wiggling her eyebrows at us when we talk to her... With the shunt not working, however, its just a matter of hours before the pressure goes back up & we're back to her being in pain again. 

They're pretty sure (99.9%) that this means surgery. The question they're asking now is: today or tomorrow? Dr. Tulipan (Ava Gray's neurosurgeon), doesn't do surgeries on Mondays. So the team may want us to wait until tomorrow. We can pray that if that is the case, that we (her friends, family & medical team), have the wisdom to know when she's in serious pain today/tonight & can figure out quickly how best to help her. 

These are the kinds of days I struggle with most. Knowing that she might have some suffering coming her way and wishing I could shield her from it.  Please pray for mercy; both for Ava Gray and for the rest of us who hover around her. That we would all collapse on Jesus. He loves her so much! And He understands suffering far better than even Ava Gray. And He is mighty to save. 

We'll definitely keep you posted. I'm sorry I can't always respond to the messages & emails & fb posts, but please know that it is so encouraging to hear from each on of you. Thank you so much for letting us know that you stand (& collapse!) with us.

Much love,

Jules & Co.

Oh, and I know many of you will ask about Havyn too: Kristina & Laura have been tag-teaming with both the girls (LD staying overnight with Ava Gray & KP driving us back & forth & taking Havyn home for naps). The Blanco's (Jonathan & his parents; Rafael & Mary) are coming whenever they can to be with Ava Gray & Ana is back in town today too, so we have lots of our sweet "home team" with us during this stay. Very (VERY) thankful for them! And somehow I got a full nights sleep last night. If that isn't mercy, I don't know what is!) : ) 

The Shunt Again...

Dear Friends,

We're back in the ER today (after a day and a night of Ava Gray being unable to keep any food down). After the usual series of tests, we found out that it is, indeed, her shunt this time. They "tapped" her shunt, and the pressure was incredibly high. They've injected a clot-busting medication into the shunt in hopes that it will break up whatever is causing the shunt not to work. We're headed to the ICU now (as soon as a room becomes available), and then we wait. If the TPA works, then no surgery. That is obviously the best-case-scenario, and we would so love for you to join us in praying for that. Regardless of the outcome though (a couple of days in the hospital, or another shunt surgery & recovery), our Heavenly Father is providing. And protecting. So thankful for Him, friends! This would not be bearable without Him. Little Ava Gray is feeling MUCH better now that the pressure in her head has gone down. She's resting comfortably & that is such a relief! 

We will keep you all posted.

Much love,

Julie & Co. : ) 

Heat & Holidays

The temperature inside the house right now: 89˚. Outside: 104˚. Both babies are napping, I don't know how. Their hair is plastered to their sweet little faces....and they sleep.

In spite of the heat wave (is it officially that?), we girls got away to a cabin for a few nights (thanks to our sweet & wonderful Ana!) who took us up to her "home away from home" and let us soak up some R & R.

I'm going to let the pictures speak for themselves.

Oh, and one last thing before I do: the Ava Grays' CT results showed that everything is settling in the way they'd hoped (internally), but they may have to do a "redo"surgery in order to fix Ava Gray's left eye (her left eyebrow & socket are still coming out more than her right, and that's affecting her vision). We'll go in for a follow up in 12 weeks, and find out if we need to go through this one more time. Please join us as we pray that we don't have to!

Thanks dear friends. And now, some pictures......(starting with some pre-cabin, backyard-in-the-Nashville-heat shots of Havster. The reason no shots of AG is that she was a smart little cookie and decided to stay inside & skip the heat altogether) ☺

And then.....CABIN TIIIIME!!!

 Havyn getting a present from her Ana (a little matchbox car: she was in heaven!):

 Ava Gray, soaking up the love from her KP:

Havster. Still with the car. :) 

The next morning it was all about watercolors. Eating them, patting them, but mostly painting 

with them : )

 

And AG? Well, she was having a good ol' time too.... Stretching, smiling, kicking her feet to the music....

 Another thing Havyn loved: stairs, glorious stairs...

 It really was so fun watching Havyn explore every look nook & cranny. She was very thorough. : )

 Ava Gray, though she didn't join her sister in exploring the cabin, was very happy being there. She wanted to tell us all about it. Oh, how I love hearing her tell us about things!

 And she got quiet a few naps in too. Aren't naps lovely?

 And as for me, I got to spend a few amazing hours out on a shady porch overlooking lush green valleys, feeling a cool breeze on my neck, while I READ. A BOOK. First time in....ummm....forever. : ) I was thrilled. Thanks so much KP & Ana, for that, and for all you two did to make this a vacation for a mama as well as her girls!

This last set of pictures are from our time at a little place called "Blue Hole." (Ana, Havyn & I enjoying the water - KP & AG are clearly not pictured, as they were back at the cabin, resting it up) : )

Also not pictured: Lots & lots of snacking & resting & music & just taking a deep breath after a long stretch of busy living. I am so grateful for these few days at the cabin. They were (and are) just exactly what we needed. Thanks Father!

And a little update on the AC: I started this blog entry two days ago, & yesterday the air conditioner finally stopped working altogether which lead to a very warm and sleepless night for all. So thankful that our awesome landlord installed a window unit AND fixed the AC today. Our house is now a cool & breezy 71˚! Ahhhhhhhhhh.