Things We Love

Ahhh, the disjointed days of hospital-living are behind us again, and we are starting to settle into the rhythms of home-life. We like being home. : ) All of us. Ava Gray just got some new equipment that she has really been enjoying (her new comfy bed & her luxurious bath-seat are by far her favorites). Also she has been soaking up good times of just cuddling up at home with her Ana, her Papi, and her Blanco Grandparents. We will definitely be posting pics of those soon. Havyn is getting her "adventure on" and is loving the outdoors more than ever. Another thing Havyn just loves? DOGS. She is seriously enamored. It's the cutest thing. When the dogs across the street start to bark, her eyes light up, she raises both hands in the air, and barks along with them. Then she calls out excitedly to them until they wander back behind their house again. I'll be sure to post some pictures of that too. For now, I can share a few of Havyn and a friend she met at Vanderbilt last week. (Her Papi took her down and introduced her to this gorgeous lil gal/fella?) Havyn loved it. : )

Okay friends. Will come post again soon. Just wanted to let you know that we're loving this being-home-thing, and that AG is doing GREAT! : ) Till next time.....(Oh, & for some more pictures of the Blanco's & the girls, check out the new page here on the blog!)

Home & Happy About It!

Friends,

It is so wonderful having Ava Gray back home with us tonight. Her surgeon stopped by in the early afternoon & after taking a look at her declared her "all healed up!" They still have no idea what caused the swelling or why it resolved, but I really don't mind at all. I was thrilled when he said we could go home today, and we packed up her room in record time. : ) We got home late this afternoon, but once we got the girls all settled in they just relaxed and started playing/talking and enjoying being in their own space again. It's been amazing watching both girls calm down from the weekend of chaos in just a matter of hours. God's sweet gift of home-sweet-home!

Thanks so much for all the encouraging messages & for your faithful prayers. God has dealt mercifully with us!

And this will (hopefully) be the last email you'll get from us in a while....

So goodnight dear ones.

-Jules (for all 3 of us)

And just in case you didn't get to see this yet, here's AG last night, feeling feisty. : ) 

http://youtu.be/mium41o_rjY

Still Hanging at Vandy

Friends,

Not much to update you about. Still on the 8th floor. Ava Gray had some trouble keeping food down late last night & early this morning, so we're taking it easy & slowly working back up. She got some good rest in today, though, and has been very vocal during her awake times. Havyn is also doing well (though in the absence of any good morning or afternoon naps, is melting down after 4pm each day). Still, I gotta say, both these girls are such troopers! So very grateful for the both of them. 

Prayer Requests: 

1. That AG will be able to keep down her food tonight, and that we can increase her volume up to the place where they don't want to add supplemental IV fluids.

2. That Havyn will get some times of rest in the next day or two (and that she sleeps through the night tonight!) : ) 

3. It was hard to leave AG tonight. So long to be with her, but I can't be in two places at once. Please pray that I would grieve this in a way that doesn't leave me bitter. And pray for her, that she would feel peace & lots of love from her Heavenly Father tonight. 

Thanks dear ones.

-J

Moving Up to Room 8742

Friends,

Just wanted to let you all know that Ava Gray did get out of the ICU this evening (and got herself moved into the penthouse of the hospital: the new wing on the 8th floor - pure luxury!). The doctors want to keep her in the hospital till at least Monday because they really don't know what's going on with her, and don't want to send her home unless the swelling completely resolves, or they can figure out what is going on. There are three possible reasons for the swelling (which seems to have gone down a little, but not much). It could be: 1. residual swelling from her surgery that just all went to one spot, 2. An infection (tho no real obvious signs of that), or 3. a collection of spinal fluid (due to a failing shunt). 

The good news is that Ava Gray is still acting like her spunky lil' self when she's not resting, and that they've allowed us to resume her regular feeds (which she is tolerating well - praise!). The problem and the cure still remain a mystery to us, but are fully known by her Heavenly Father. Trusting Him tonight with this precious little life. 

Thank you for the prayers: Havyn is hanging in there, and though she kinda melted down at the end of the day, she's had lots of sweet moments of rest & play throughout the past few days. I've also gotten more sleep in the past few days than I have in the past month, which is somewhat of a miracle. 

Heading out for a little more shut-eye. 

Tired but grateful,

Jules

New Morning

Friends,

Ava Gray's situation looks so much better this morning. The docs have put her on antibiotics (even though there was no sign of infection), and the swelling continues to go down. As soon as the "plastics" team signs off on it, we can start her regular feeds again (which will be good as medicine + an empty stomach = one unhappy AG!). The plan is to get her onto a regular floor and out of the ICU, today, and then by tonight or early tomorrow we may (MAY) get to take her home. Still a lot of mystery around the reasons for the swelling (and a few other symptoms that have popped up), but her vitals look good, as does Ava Gray! Her skin is pinking up, and she is babbling more, kicking more, and even starting some little half-smiles. We are thrilled! 

Thank you for the messages of encouragement, the texts & prayers. So sorry I haven't been able to respond to many of you personally, but know that your notes mean so much to this mama. 

Blessings friends!

-Jules

Quick Late-Nite Update

Friends,

Many tests & conversations & a shunt tap later...and the doctors are hopeful that this is NOT a shunt failure, but just a shifting of the collection of fluid (swelling) in Ava Gray's head & skull. They're still not sure exactly what is going on, but are relived that preliminary tests don't reveal any infection in her body, and that they indicate that the pressure inside her shunt is well within the range of normal. They plan on placing her in a regular room tonight for observation, and Jonathan is spending the night with her there at the hospital. I'll keep you all updated as best I can. 

Thanks for your prayers & support.

Much love,

Jules

Needing Grace...And Finding Grace

Friends,

We find ourselves back in the Vandy ER today. Ava Gray had some unusual swelling on her forehead (and between her eyes), that started last night & has gotten worse throughout the day. Her surgeon asked us to come into the ER, where they've run tests, scans, etc. (and are still in the middle of finishing those up). The findings so far are a little disconcerting: there is a pocket of fluid and air that is building up both inside and outside of her skull, and the pocket is putting pressure on her brain. The folks we've talked to so far are thinking that this is looking a lot like another shunt failure (which would mean another surgery and time in the ICU). 

As is the theme in our life with Ava Gray, we don't have a lot of answers. And with nothing to hold onto but Christ, we fall hard on Him. Please pray for us. You know. The usual things. (Rest, Peace for Havyn, Faith instead of fear). Jesus really is giving me peace in this room today. Thankful for Him, friends. What a dear Savior we have!

Till soon,

Jules

And some pics of the girls at home this week....it's been a precious time with both of them. Thankful for that.

Chillin at the mall : ) 

Falling down is fun : ) 

Our sweet champion

Rockin & rollin...

Outdoors & lovin it.