Well Avery has made it almost to the 24 hour mark of her partial closure. Yesterday she was pretty up and down. Her stats were way lower than they had been prior to the closure. It was pretty scary and I was uneasy all day. I actually slept pretty well and feel rested. This morning, the docs decided to raise her meds just a little bit more and she seems to have responded well to that. Now, they will watch her and hope that she can keep her numbers up as they ween back down on medications. Later this week they may close the remainder of her chest and we are back to readjusting again. It is such a long slow process.

We are supposed to meet with a bunch of doctors sometime this week to discuss Avery's big picture. Although it is easier to break up her two conditions, it is sometimes helpful to get an idea of where she is as a whole. I will let you all know what we find out.

As for me, I walked/ran for the first time yesterday and it felt SOOOOO good. I am not as sore as I thought I would be so I guess I better step it up a notch! I miss Kaitlyn desperately. It is so hard to be away from her. Actually I hate it!!! My mom is leaving today so that is going to be really hard for me to get used too. She has been such a fabulous help and support and I will miss her dearly. Hopefully she will be able to come back again.

Anyways, thanks for all your comments. They keep us going!



  1. Still praying for you guys. I hope miss Avery continues to fight. Anything us fellow bloggers can do to help please let us know.

  2. Hang in there Carissa! I know it has to be really hard having your family split up right now, but please know you have the prayers of your big extended CDH family out there!

    Take care,

  3. Bob CusolitoJune 16, 2009


    I am very proud of you and your family and how you are handling this. I'm wishing you and Avery the best. If we can do anything to help......

  4. I pray for Avery Often and will continue to!

  5. Thinking of you today, as always.

  6. We just got back from our trip and checked on you guys as soon as we could. We'll be praying.

    And, way to go on the run!!!

  7. You go girl on your running. Maybe you will motivate me enough to get exercising again! Yeah for the 24 hour mark!

  8. AnonymousJune 16, 2009

    Hey, I was running right beside you! Yah me too! We will lose 20 lbs. together!

  9. AnonymousJune 16, 2009

    You guys are doing such a great job, keep up the hard work. Aaron and I always likened Pete's NICU stay to running a marathon blindfolded. You have no idea where or when the end is coming and you know you should be pacing yourself but it seems impossible. I know it's a torturously slow process but keep the faith. Avery has come so far and overcome so many obsticles and your amazing parenting has a lot to do with that. We are all still here praying for you guys.

    Heather and Aaron Briggs

  10. AnonymousJune 16, 2009

    Praying for you all and precious Avery! Praying for wisdom for the doctors and strength and healing for Avery.

  11. AnonymousJune 17, 2009

    Hello again!
    We are regularly reading the blog and praying for you! Thank you for allowing us to be on this "journey" with you. Talking bout walking on water...you guys are a living example of the LORD's strenth in and through and to you! WOW! The Dudley's

  12. kara nd hannah 11 and 16June 17, 2009

    we wish you the best and hopefuly avery will make a full recovery and be out of the hospital soon. avery is gorgeous and so is kaitlin!!! best wishes!!!
    hannah 16
    kara 11

  13. AnonymousJune 18, 2009


    I am still trying to keep up with Baby Ave by your blog. I have continued to pray for her and for you guys also. If you need anything please let me know. I am home a lot during the week and would love to take you to lunch or shopping. Call me.
    Shannon R.

  14. AnonymousJune 18, 2009

    How are things going now that you are solo? Hope you are hanging in there!