The Final Countdown to.....Home?!

Greetings friends!

I started writing this on Sunday from the confines of my bed, where I was recuperating from a rather hefty cold (ears, throat, head), but didn't get around to finishing it until recently. After 3 days of not seeing Ava Gray, I was finally able to go back yesterday for a half day - it was so wonderful to see her again! During that period where I'd banned myself from the hospital she had;

• Taken her first ride outside of room 4555 that didn't end up in the OR or radiology dept. (She was all dolled up and taken around to visit folks on her floor.) I haven't heard exactly how it went yet, but am so thankful she got to get out and mingle! The team says they're getting her ready to go home. : ) That sounds just fabulous to me.
• Had her Nissen & G-Tube surgery scheduled for Friday (& has had quite a few more substantial spitting-up episodes to prove that this really is a good idea!)
• Pulled out her feeding tube...again (good to know she's still got it in her!)
• Taken great naps & had some really great alert times interacting with her nurses and her "Princess" mirror. (She loves that thing!) 

And during that same period I was:

• Loved on by friends & family who brought meals (chicken soup!), washed dishes, took milk to the hospital in the middle of the night, did laundry (countless loads!), and helped with Havyn. Such a sweet outpouring of grace!
• Getting some amazing rest. (Most of the time spent IN my bed - didn't realize how much this helps!)
• Thinking about Ava Gray's homecoming and what we will need to make this a comfy and stress-free transition for her (I know this is not in any way a for sure thing, but really - she could be home as early as next Friday. !!!!)
• Missing that little girl like crazy.

And Havyn spent her time at home:

• Taking some uninterrupted naps for the first time in...maybe forever. 
• Eating a ton (and starting to produce an encouraging amount of wet & dirty diapers - answer to prayer!)
• Smiling up a storm and practicing new cooing sounds. A-DOR-A-BLE!

It is just amazing to realize that both girls could be together at home in as little as a week and a half... It's hard to even wrap my head & heart around that. He has truly done great things in these past few months! I feel like we're in the home stretch now, though I know that just because we get to come home we will not stop needing Him desperately, nor will He stop being our amazingly faithful Provider & Protector!! 

Praising Him for how He has loved us,

Jules

(PS. Ava Gray's heart surgery looks like it is tentatively scheduled for early September - we'll keep you posted on that)

More Good News

Friends,

Ava Gray has gone from barely tolerating her feeds and not being quite "herself" (quiet, restless & in some pain), to keeping all her food down & acting more and more like a little girl every day. Whereas she was listless and withdrawn 10 days ago, she's now alert & vocal ("Hey! I'd like a bottle over here!"). Those of us her see her regularly are falling in love with her all over again as the precious little personality God has given this girl starts to blossom. She is feeling BETTER! 

The team has her on continuous feeds through her feeding tube (she had to get that put back in, but now that's she's bigger it doesn't seem to bother her much at all - prayer answered!). They are going to get her up to full feeds (& off her TPN, which is messing with her liver) by Monday, and then start feeding her the same amount but in regular "meals" vs. continuous feed. 

I wish you could see her, she is such a champ! 

I find that the looks I'm exchanging with her nurses over her head have gone from anxious to exhilarated. Somewhere along the line we've morphed from wondering if she's ever going to make it out of the NICU, to wondering if she's going to go home with a G-tube or bottle. And then I think, "wait, going home?" I'm stunned when I realize that we've walked through a long dark valley and though we're still in a ravine, that there's light up ahead. I feel like there should have been a huge giant party to celebrate the milestone, but it crept up so slowly that we are just now realizing we've past it. Praise God, praise God, praise God! He must be smiling to see the reality of His power start to slowly dawn on us, and how He must delight in my surprise. 

Here's the new prayer request:

• Supply & demand. Ava Gray's feeds are getting up there. She's not quite at full feeds, but I'm already struggling to keep up with both girls. (Those praying specifically for Havyn, pray that she gets enough, and that I would recognize it quickly if she's not!) Here's where I have to stay hydrated, well rested, and "un-stressed." Sometimes that's easier said than done. Some of my sweet nurses have taken me aside this past week and talked to me about not trying to be "superwoman." They've seen me getting tired and drained lately. They've lovingly pointed out that if I get sick, my girls are in trouble. I'm so thankful for their concern & honesty. Pray that I would recognize when I need to ask for help and when I need to just rest. I really don't want to try to be the hero of the story God is telling here. HE is the hero, while I am very helpless & human. His power is shown through my weakness and reliance on Him, not my ability to be a rock star on my own. "In repentance & rest is your salvation - in quietness and trust is your strength." 

OK dear friends, that's it for now. Thank you for your love & prayers! It is so sweet to see them being answered powerfully in this little girls' life and in mine.

With a mix of great tiredness & joy,

Julie

PS. If you live nearby, and would be interested in volunteering to do "milk runs" to the hospital, I would be most grateful! Just let me know. Thanks friends.

The storm & the Savior

Dear Friends,

I have to start this update out with a confession: God has very gently but firmly confronted me with the fact that somewhere along the line I stopped walking by faith by looking to Him to define reality for Ava Gray, and turned to "the facts" instead. So I have repented, and by His grace, will no longer do that. The facts are still the facts, but they don't determine what Ava Gray's future holds, and they don't determine whether or not we have hope. Actually, regardless of Ava Gray's path or what her future holds, she and Hayvn and I have the most incredible hope & promise. So like Peter who walked on stormy water towards his Savior, we are walking through the storm of Ava Gray's hospital stay with our eyes on the One who calls us to do the impossible and live by faith. The waves can get pretty big out here, but I'm no longer fixing my gaze on them but on this powerful and loving God who has promised to never leave us or forsake us (and to provide for and protect us at every step along the way). Huge promises from a God who is always faithful! 

So what are the facts (read "waves") today?:

• Ava Gray is almost two weeks out from her last surgery where they put in a VA shunt (that feeds into her heart). 
• She has done well, especially during this last week where she had a run of 3-4 consecutive "excellent" days. (Eating a lot, keeping it down, talking & smiling at momma, gaining weight, head size stable, etc). 
• Then, two days ago her head circumference started to inch up again and she started to have some trouble keeping her food down. (This started right after her first vaccine shots, so hard to know if this could all be attributed to a reaction to those or not). 
• The wonderful team at Vanderbilt did an ultrasound of her head to "see what they could see" and were happy with the results. (Nothing out of the ordinary). 
• Her head circumference is back down a little, and she's working on keeping her feeds down too. As long as she can get back to eating as much as she was before her shots by tomorrow morning, she won't need a feeding tube. (Let's pray she can avoid that, as she hates the feeding tube with a passion!). 
• And as far as the known facts go, that's about it.... They are working on getting her up to full feeds, and as long as the shunt is working when she gets there - she can come home!

Although this seems like a fairly good report, will you support Ava Gray & Havyn & I by merely glancing at the facts and then turning to fix your gaze on the face of our Heavenly Father? If you want to, you can join me in praying over Ava Gray the following words of encouragement & promise;

Jeremiah 17:14 Heal me, O Lord, and I shall be healed; save me and I shall be saved, for you are my praise.

Psalm 37:39-40 For the salvation of the righteous is from the Lord; he is their stronghold in the time of trouble. The Lord helps them and delivers them; he delivers them from the wicked and saves them, because they take refuge in him.

Isaiah 49:23b-25 Then you will know that I am the Lord; those who wait for me shall not be put to shame. Can the prey be taken from the mighty, or the captives of the mighty be rescued? For thus says the Lord: "Even the captives of the mighty shall be taken, and the prey of the tyrant be rescued, for I will contend with those who contend with you, and I will save your children."

Jeremiah 33:3 Call to me and I will answer you, and will tell you great and hidden things that you have not known.

Isaiah 30:15 This is what the Sovereign Lord, the Holy One of Israel, says: "In repentance and rest is your salvation, in quietness and trust is your strength." 

Isaiah 41:12-13 You shall seek those who contend with you, but you shall not find them; those who war against you shall be as nothing at all. For I, the Lord your God, hold your right hand; it is I who say to you, "fear not, I am the one who helps you."

Isaiah 49:13 Sing for joy, O heavens & exult O earth; break forth, O mountains into singing! For the Lord has comforted his people and will have compassion on his afflicted.

Revelation 21:5 And he who was seated on the throne said, "Behold, I am making all things new."

For the prayer requests, here's an updated list :

• That I would repent quickly when I fail (which is often!) and would run merrily to Jesus for rest.
• That even when I fail to be a light where He has placed me at Vanderbilt, that He would still use me (& these two girls) to make Himself look good (read as wonderful, loving & powerful as He really is!)
• That I would stand firm against the Accuser, who would love to tell me that I don't have the "right" to ask for outrageous things from my Father.
• That God's presence would be tangible to Ava Gray & Havyn & I.
• For the stamina of our support staff (both at home, and at Vanderbilt). For healing of one of our sweet nurses who has a really badly hurt knee (but keeps hobbling into work to love on Ava Gray anyway!)
• For Ava Gray's healing. And for the healing that he wants to do in the hearts & lives of those of us who love her.

I am so thankful for the love of my Father today. He is MIGHTY to save! I wish I could see you all face-to-face and tell you more about what He has done, but that will have to wait. 

My love to you all - 

Jules

Pictures include:

1. Ava Gray doing "tummy time" with one of her special nurses, wearing an outfit a dear friend made especially for her, while looking into her mirror (a gift from another one of her adoring fans). This girl is loved!

2. Another one of Ava Gray in her new dress (Thank you Diane!). 

3. Ava Gray passing her hearing test (yay!)

4. Ava Gray in her swing (sporting a new hat)

5. Havyn hanging out & talking at the foot of her sisters bed

6. Sweet times with Havyn in the morning

7. Fun times with Havyn in the morning

8. How to put a baby to sleep (keep her warm & unable to move!)