Settling In

Oh, but it's glorious having Ava Gray home. She is a whole different girl: big smiles (even when no ones around to tease one out of her), lots of insistent babbling, and rolling like nobody's business. Havyn is getting her groove on as well. : ) Here's some of Havster doing just that:

And here's some of our amazing Ava Gray. She makes a really adorable patient, but an even better regular-little-girl at home! First, AG in the hospital:

And then in her own home-sweet-home:

Isn't she sweet? Or am I just horribly and incredibly biased? (I am, I admit it) : ) Thanks for praying for each one of us. We definitely feel & rely on those prayers! Will be posting soon, but just wanted to let you all know that we're doing well & soaking up the rest. Till soon! -J

It's Official

Going home. Just got the final ok. Just have to pack up and head out : ) Ava Gray looks wonderful. As usual, God bringing better-than-we-could-have-hoped out of the hard, dark times. Felt your prayers, friends. Buoyed by them. Thanks Father for this beautiful little fighter-girl!

-J

Whew!

Friends, Ava Gray is all settled into her room for the night. She looks great! Her team is working on pain medicine to make sure she's really comfortable (though thankfully she hasn't acted like she's been in a lot of pain). I'm heading home soon to rest up for the night, and then we'll hopefully come back early tomorrow morning to bring this little one home again. She got out of this surgery with minimal amounts of scarring (just a small incision below her belly button and another to the side of her stomach). She also got to keep her hair intact (Yessss!) Will keep you all posted!

-Jules & Co.

Changes & Praise

Friends, Ava Gray is still in the OR. They called me to tell me that they were unable to feed a cath down through either of the main veins in her neck. For the time being, this rules out a VA shunt (a shunt that empties into her heart). They are going to try, instead, to put in a VP shunt (one that empties into her stomach). This is the kind of shunt she had (several times) in the NICCU...and we never got one to work in that location, but now that's she's grown a lot, I'm hoping that things have changed for the better, and that this one will work.

******

Just got back from meeting with Dr. Tulipan - they were able to place the VP shunt and they say everything looks great! Very good chance we'll be going home tomorrow. Such relief : ) 

Thank you for praying for us. Gotta run and go see my little girl in recovery!

Love,

Jules & Co.

(Rafael & Mary Blanco were able to come just before we found out the good news. Fun to be able to rejoice with them!)

OR at 1:00 PM Today

Hello All,

We just found out that Ava Gray will be going to surgery today at 1:00 pm. They think there may be a kink in her shunt, so they are going to "revise" it (which means they'll go in and replace the tube or catheter that runs from the shunt in her head to where it drains in her heart). The wonderful news is, we may be able to go home tomorrow if all goes well. Wouldn't that be amazing? 

So to catch up: since I last wrote, Ava Gray has had to have 2 taps of her shunt (to draw off the extra fluid that's causing the pressure in her skull to build). By the time they would tap the shunt, however, she would already be in a good bit of pain. As you can imagine, she had a rough lil' night here in the PICCU. Through it all, I continue to be amazed by her tender, fighting spirit. Love this little girl so! The other loved girl (Havster) is off to nap and then go for a swim in the pool with her dear buddy, Ana. She is almost sure to have a blast. : ) Laura D has arrived here at Vandy with food & music & energy to spare (good thing: I was out of all 3!). She plans to stick right close to Ava Gray so I can catch a nap or two here in the room & possibly stay the night with Ava Gray tonight after her surgery. Kristina P. pulled the night shift with Havyn at home last night. I seriously don't know what I would do without these women. Even in this exhausted state, I am keenly aware of how much I (and we) are blessed!

Will touch base after the surgery and let you know how she's doing. Thank you for....well, you know.

Off to nap,

Jules

Waiting

Friends,

Thankful that:

• In spite of it being very busy in the ER tonight, that we were fast-tracked back to a bed immediately.
• We were able to get a conclusive answer quickly (it is her shunt: the pressure was over 30 when they tapped it around 9pm tonight).
• We didn't have to wait long for a room to open up in the PICCU (Room #5415 for those who need that info)
• Our nurses have been wonderful (Bethany is our nurse tonight, and could not be kinder)
• Our in-home nurse (and dear friend) Ana was on today (she is a pro at this, and such a comfort to me during our ER visits!)
• I got a two hour nap in this morning (again, thank you Ana). That'll come in handy as I'm gonna be up way past my bedtime tonight : ) 
• Ava Gray is not in pain at the moment. (Praise, as the past few days have been pretty rough for her - now that the pressure is back to normal after her tap, she's got to feel a zillion percent better!)

Tomorrow the Neuro team will check in with us. They think odds are high that she will be going in to surgery tomorrow, but the TPA injection/treatment may just work again...we can pray towards that end!

Okay. Lights are dimmed. Lullabies are playing. Ava Gray looks adorable and completely at peace. I'm going to try to catch a little shut-eye myself. Goodnight friends.

-Jules

Oh, and here's Havyn at the park across from Vandy (after she and KP dropped us off for the night):

 And our sweet lil' trooper, getting some well-deserved rest:

Nite all!

ER Tonight

After a week of repeated throwing up & just not being herself, we are being sent back into the ER to check about Ava Gray's shunt. Packing up right now. Little Havyn running around and directing things. Ava Gray exhausted on her little bed. Thanks for your prayers, dear ones.

-Jules