Back At Woodyhill Drive

Friends,

I am writing from home. And Ava Gray is resting in her pack-n-play in the living room. Ana is already with us again (praise!), and Havyn is heading down for a well-deserved (and hopefully very long) nap. : ) 

We are all SO thankful for the unexpectedly quick discharge from the hospital. Still unpacking & catching up on laundry & seriously eyeing our beds and toying with the ideas of some afternoon napping ourselves. Praising God for His mercy towards AG and to all of us.

Thank you for rejoicing with us. : ) We are blessed. women. And today we are aware of that in a new way. Also want to say that without the help of Laura Damon & Kristina Pettigrew, I don't know how I would have made it through this time. You both have been such a gift to this family. Thank you. 

Okay, heading out to either get something done or to sleep. : ) 

Blessings friends!

-Jules & the girls

And some last photo's....Havyn all dressed up to go see her sister at the hospital (none of us knowing at the time that we would be going in just to pick Ava Gray up and bring her home!). Two of AG resting up & looking precious. Two more of Havster getting to eat at home again. : ) Not pictured: one very, very grateful mama and one very tired but rejoicing Grandma. 

Coming home. Today.

Friends,

Just found out we are being discharged today. : ) Getting packed up to take this adorable girl HOME. Much love to all of you. Thank you for all the prayers!

-Jules

Room 7526

Friends,

I typing this from Ava Gray's new room on the 7th floor (Room # 7526). We maaaaaade it! : ) AG is resting comfortably and I'm just going to unpack & start settling in. Thanks for all the prayers!

-Jules

(Now we just have to hang here until they're ready to send us home. Shouldn't be long now) 

Memorial Day Update

Happy Memorial Day All!

Quick update re: Ava Gray...Though she had a bit of a rough night as far as keeping her food down (4 bouts of emesis) : ( the morning has gone well. We're back to feeding her ourselves (less volume, more often, with warm formula vs. cold, and no pump!), which usually works out much better for her. She definitely CAN open both eyes, but at this point just prefers to lazily open her right eye, and to keep her leftie to herself. Her surgeon probably won't let her leave the ICU till she is willing to open both, though, so we're still just waiting on our lil' AG. : ) 

Havyn is currently at home, napping away with my mom (who stayed the night at the hospital with me, and so is needing a little extra rest today). 

We'll definitely let you know if AG gets both eyes open today, and we get to head to a regular floor. Till then, have a safe & fabulous Memorial Day.

-Jules

(Here's some more pics of Havster from yesterday, and two of Ava Gray from this morning):

Ana, she does love this car! : ) 

Havyn in the middle of one of her new pastimes: twirling around in circles. : ) 

And a sleepy, but peaceful, little AG...

Ava Gray & A Saturday Update

Dear Ones,

Thanks for your patience. I was hoping to send out an update early this morning, but the day got away from me. I am finally sitting down to a computer and have all kinds of good news to pass along to you guys. First praise: Ava Gray has had a really good night (last night) and day today. No seizures. No vomiting. Very little pain (and the pain that she does have is being caught quickly & well-controlled by her wonderful nurses). She is resting soundly and healing up much faster than I expected (they swelling has gone way down from even yesterday!). Havyn also had a good day & in an unusual twist, went to sleep before 9pm tonight (during the upheaval of hospital-stays, this is sadly a rare event). 

Ava Gray is doing so well that the only thing keeping her in the ICU is that she is not yet opening her eyes. It's hard to know if it just hurts to do so (the swelling has gone down far enough where her docs say she could if she wanted to, but the eye socket that was brought forward has a little bruising around it and may still be sore to open), or if she is just pretending to be asleep in order to make everyone and everything around her "go away" (a cute little survival trick she picked up in the NICU during her first 4 months of life) : ) Whatever the reason, I am thankful that she is resting & getting lots of good sleep in during this period of healing. We definitely don't mind waiting till she's ready to move to the next step! 

The fluid in her lungs is still there, but it hasn't settled anywhere, and Respiratory Therapy is coming by several times a day to thump on her chest (which she hates) & suction her mouth & throat out (which she hates even more!). During her last "thumping" today, we did see a little sliver of an open eye (her right, the one that wasn't moved forward in surgery). Hopeful sign!!

I'm including a picture of AG and her Blanco grandparents. They are so faithful to come to the hospital and love on both the girls. Thanking God for their sweet family! Also included; pictures of Havyn in her new outfit. A little explanation may be needed here.... Her friend, Kristina P, took Havyn out yesterday for a little "girl time." They ended up at Target, and KP swears that Havyn picked out this outfit herself. I don't doubt it, but it's pretty stinking hilarious! 

Okay friends. Please continue to pray for AG, that her lungs would clear up quickly & that she'd open her eyes so she can move to a regular room! For Havyn, that she would continue to find times of rest (thanks for praying for her - God has been mercifully providing this for her!) For me, rest. : ) And for my mom as well. Thank you all for your love & prayers. 

Till soon!

-Jules

Update on AG

Dear Friends & Fam,

Your prayers for us are being answered. Last night was a rough one for Ava Gray (3 seizures and some serious "DESAT-ing" that caused them have to bag her and give her oxygen, vomiting, irregular heartbeats, and some higher levels of pain for a couple of hours). Even in this, God was merciful. The medical team was right outside the door when this all started happening so they were able to immediately intervene and come up with a plan of care (1 new anti-seizure med for the next few days + something to help with the nausea/vomiting). After reviewing the results of her EKG, the cardio team is not concerned about the irregular heart rhythm (pretty normal for someone with AG's history). I had just left the hospital 5 minutes prior to all of this, but Jonathan and his mother were here with Ava Gray, and stayed until well after midnight to make sure AG was okay (And a friend spent the night with her until we got here this morning). So, so thankful for these dear people! We also had a tremendous nurse on duty with her, which makes all the difference in the world. Thank you for praying for our nurses: they have been AMAZING!

Ava Gray has been resting comfortably all day. Miraculously, instead of the swelling intensifying (as they warned us it would), it has gone down considerably today. We are hoping that with the additional anti-seizure medication (which can cause some drowsiness), that she will continue to sleep through this period of swelling and being confined to a padded carseat. We won't post pictures, because it's a little heartbreaking to see her all puffy like this, but believe me when I tell you that she is still ADORABLE! Havyn has been enjoying her Grandma Whitacre and Grandma & Grandpa Blanco today. (Grandma Blanco just successfully "strollered" Havyn to sleep - Hurrah!!!) In spite of the stress and heaviness of the situation, we are all being given moments of rest (well, at least my mom & I are). Please continue to pray for those supporting us, and for the Blanco family as they are running on VERY little sleep right now. They have been such a help & encouragement to us. 

I will try to write again soon. We are praying that Ava Gray will be able to open her eyes soon (the prerequisite for getting out of the ICU and onto a regular floor), and that she will remain peaceful and calm in the meantime. I think mom and Havyn & I will be spending the night at the hospital, so you can pray that that goes well too : ) 

Thanks again for all the support! 

Much love from the Nash-Whits

-J  & Co.

Surgery #12 : )

Dear Friends & Family,

I'm sorry that I didn't get to touch base with you before Ava Gray's surgery yesterday. Part of God's protection this time around was to keep me so distracted and busy that I hardly had a moment to worry or fret. Merciful Father we have, yes? : ) 

For all of you that knew this was coming and have been praying for her & us already, thank you. For those of you who are just now finding out, here's a little background:

Back in early April, we found out on a visit to one of our Vanderbilt doctors that there was going to be another major surgery in Ava Gray's future. It seems the bones in Ava Gray's skull prematurely closed and calcified. That meant her brain had no space to grow. The only treatment for this was surgery. (Albeit pretty significant surgery: on par with her heart surgery. It will probably involve 5-7 days in the hospital and she'll have a nice long scar running from ear to ear to show for it!) 

She (& we) went in at 6am yesterday to Vanderbilt Children's for her 7:30 surgery. She slept peacefully right up until they took her back to the OR. The surgery took a little less than 4 hours, and after a few hours in recovery (waiting for a room) she got to head up to her room in the PICU (5th floor for all you Nash-folks that are taking night shifts!) I'm so thankful that Jonathan and his family were there with us this time - they are so wonderfully supportive and show such love and care for the girls. Also, they are so faithfully praying for them as well, which is such a gift and a comfort to this mama!

Ava Gray's surgery went well. Really well. Dr. Tulipan (her Neuro and shunt surgeon) and Dr. Kelly (her peds plastic surgeon) performed this one together. Dr. Kelly was very, very pleased with the results. He said she did "beautifully." They've warned us that there is going to be a lot of swelling in her face, and that the swelling will be at its worst at the 48 hour mark (which will be around 1pm tomorrow.) Will you pray that for Ava Gray during that window specifically for the swelling (that it would not be too painful, and that it would decrease rapidly!)? Thank you friends.

Here are a few other things we would really appreciate prayer for:

• Havyn. She has been a trooper, but this little girl has had so many fun playmates and houseguests and visitors (with little-to-no-downtime) for a couple weeks in a row that she is as hyped up as a little girl can be. Plus she is going through a major teething spell right now, which can make her pretty edgy.Translation: she is super-clingy to her mama, has difficulty calming down for naps & bedtime, and is bumping into things a lot cuz she's so tired (& then is less able to cope well with these little tumbles in her fatigued state). I am so proud of her for how well she is doing in spite of all this, but it has been tricky for me and for all the folks with me to keep her safe & calm there at the hospital while also trying to be present for Ava Gray. Please pray that she will find places and spaces during our busy schedule to truly rest. 

• Ava Gray. She had a few seizures last night, which is not shocking, but still hard. These are being monitored & controlled well where she is (in the PICU), and we are praying that she doesn't have any more. Another concern is that she's having trouble keeping her food down (also very much expected & usual after such strong pain medicine on an empty stomach and after this major surgery). Will you pray that she is able to start tolerating her regular food quickly? Throwing up with her head in this condition is pretty painful for her, so we'd like to have that just not happen any more . : ) 

• The nurses & doctors that surround Ava Gray. God has already provided her with some of the most outstanding nurses you could ask for. We are BLESSED that He hand-picked these amazing people for this time. Please pray that He would continue to provide understanding & compassionate (& slightly unconventional) nurses & docs who are willing to see a person, not a patient, in our darling Ava Gray. (And that they would continue to be patient with our entourage of family & friends!)

• Jonathan & his family. They have been such a support and a help to us during this time, but I know this is hard (emotionally and physically) on them as well. Please pray that they would find rest during this time as well.

• For me. I started out this hospital stay pretty tuckered out. I am running on fumes now, and don't have anywhere near the reserves I think I need to get through this with grace. Please pray that I would repent often & quickly when I fail & that God would provide rest, reminders of His powerful presence, and hope. I tend to lose perspective when I get too tired. Guess that's pretty normal though... : )

• For my mom. She has been so gracious & giving & loving to me and to everyone around us. I know she's pretty tired, herself, and I am asking that God would sustain her through this as she is here to support me. (Thanks again Carl for sharing your wonderful wife with us! We miss you.)

I'll sign out now (going to try to catch a nap while Havyn is down), and then we'll head in to the hospital to see our little AG. (Jonathan & Ana are with her right now, which is such a relief and a blessing!)

Thank you all for your love, text messages, prayers & for just being there for us. We feel it. 

With nothing but Christ to stand on,

Jules

And just for fun here's a few pics of the girls:

Little AG the night before the surgery:

Chillin....

Havyn taking a nap on her sweet Grandma Blanco:

And then watching a puppet show during the surgery (with her Ana & Grandma Blanco)

Fun times with Grandpa Blanco:

A few of our darling AG after surgery:

Ok dear friends. Really am heading out now. Hope to connect with you all soon, but if I don't return a text or a call right away, know that it's just cuz we're in the middle of it. Thankful for each of you!

Photo Shoot

Our dear nurse & friend, Ana, gave us the gift of a photo shoot for the girls birthday. So a few weeks ago, we headed out to Centennial Park with the girls, and here's what came of it (Ava Gray obviously tuckers out pretty quickly here, but she can't help being adorable all the same):

Thank you Father, for the gift of these girls, for Ana, and for beauty, beauty, beauty everywhere!