A Good Day

Friends,

I've received such an outpouring of encouragement from you all. Thank you! This truly is a quick update. Ava Gray is off of her pain meds, and was relaxed, aware and cuddly today. We still won't know if this shunt is working for at least another few days. (Her head circumference climbed a little, then went back down. We're just watching this closely.) She is on day 3 of 7 of antibiotics. Once she gets off of those (if the shunt is still working) we just have to get her up to full feeds & she can come home!

I wanted to offer by way of thanksgiving & praise the following blessings we've received in the past few days:

• A stroller for Havyn (from a sweet friend who was, I guess, tired of seeing me tote several bags & Havyn everywhere I went). Today was our first day to use it, and it has made SUCH a difference. I could actually eat a meal using both of my hands!
• Quality time with Ava Gray (one of our sweet nurses took Havyn for a stroll so I could have one-on-one with my other girl. It was a precious time, and was fun to hear the nurses laughing with/at? Havyn out in the hall while I snuggled with Ava Gray)
• For flowers from some of my Nashville girls who stopped by after a particularly hard day just to say "we're here for you." 
• For our primary care NURSES! I cannot say enough about them. Someday I will have to tell more of the story, but just know that they lavish love on all three of us every time they're on duty, and have wept, prayed, laughed & rejoiced with me throughout this short but arduous journey. They are starting to feel like family! (We love you Sarah, Lori, Lee, Annie & Bonnie!)
• Messages from all of YOU. Even though I can't respond to every one, I am blessed by you all. Thank you again!

Grateful,

Jules

(Pics are from today & yesterday & include: Havyn sporting her new stroller, sleeping at the bottom of her sisters hospital crib, Ava Gray sporting her "beach-wear", and the flowers that brightened my day)

A Good Report

Hello Friends,

I'm so glad to report that Ava Gray came out of surgery today looking better than she has for any of her previous ones. This was such a relief as this was her longest surgery so far (2+ hours in the operating room). Though she was really hungry & agitated earlier this morning (no food since midnight last night, and surgery delayed till 2:30pm today), she was calm and relaxed by the time she was wheeled back to surgery. It helped that the surgery staff let Havyn & I come back to be with her in pre-op, and a sweet nurse held Havyn for a really long time so that I could have some one-on-one with Ava Gray - such a praise! Even right after the procedure she was calm (you know, for a baby), alert, and interacting with mom and others well. They took an xray of her chest and are happy with where the shunt is located in the heart. We won't know right away if the shunt works in this new location (and probably won't for a week or so), but are rejoicing over this sweet girl's success today. Thank you for the many, many prayers. There was a tangible feeling of peace in her room this evening. God is providing such comfort and rest (both for her and for Havyn & I too!) I'll update everyone again as soon as I know more. 

Much love,

Jules & the girls

(The pictures of Ava Gray are from today. 1st one pre-surgery, the rest post-surgery; doesn't she look great? The ones of Havyn are from last week, but they just crack me up) : ) 

Surgery this Thursday

Friends,

Hello again. Wanted to update all you praying saints. Ava Gray's shunt is going to be internalized this Thursday. This surgery will be a little different than her previous ones in that the team has (mostly) decided to go with the VA shunt (which feeds into her heart). All the teams have been weighing in and trying to come up with a solution. I think we're (mostly) all on board with the new game: 

Neurology is pushing to do the surgery asap (external shunts make them very, very nervous due to the super high risk of infection). 

Infectious disease was wanting to wait till Monday (hoping her numbers would look a little better by then), but as the numbers are already heading in the right direction they are willing to compromise. They know they really can't wait until an ideal time as, again, there is such a risk involved with remaining on the external shunt. (I so do wish we had more time. Ava Gray was off of the antibiotics recently for a brief period during which her white cell count jumped up again. She's back on antibiotics, but we don't know what caused that jump, or how her body will respond once she goes off them again. ***The danger here is that if there is already an infection in her body, as soon as she goes off the antibiotics the infection could flare up and cause her shunt not to work - again).

Cardiology isn't as concerned about when the surgery takes place, as they are about where the shunt is being placed. Although they are "signing off" on this one, they have been very open about the fact that this shunt is a risky one for Ava Gray (due to her heart defect and her age). 

Actually all three teams are acknowledging that this isn't the greatest option for Ava Gray, but at this point it seems like the only one available to her.

I still have some questions for the Neuro team, which hopefully I will get answered sometime today or tomorrow. 

I don't know if I sound stoic in the middle of this. (Do I sound stoic?) It's easy to come across that way via email or even in person. I can assure you, though, that I am not. I need your prayers more than ever. Mostly that I would not run from the Father in my fear & pain, but to Him. I know He is good, and that He is telling an awesome story with Ava Gray's life. Still, He is calling me to wrestle with Him instead of trying to be super-spiritual or super "good" on my own without Him. I need to keep remembering that a beloved daughter never has to be afraid of being too real with her Father. Pray that I would remember that. Often.

Wish you could all see this girl in action. She just thrives every time she's put on an external shunt (becoming alert, responsive, smiley, hungry, talkative, etc!). It breaks my heart to see her doing so well, while knowing that this is just a temporary fix. Ava Gray needs help, and God is putting all of us who love her in the place of acknowledging that in life or in death - He is our only sure hope!

For those of you who are specifically praying for Havyn, thank you! I am starting to provide more of a schedule for her, and she seems to like that a lot. She is eating, sleeping & smiling up a storm.  Please continue to pray for her (that only getting about 25% of moms attention, she would still know that she is 100% loved!)

Here's some pics of the girls today. 

I say it every time, but I mean it as much ever; thank you for your love & prayers!

Jules