Wednesday, June 24, 2009

another day

well, i'm posting early tonight because nothing is going to change today. Nothing was weened off of her. Nothing was turned down. Nothing has changed. She hasn't slept a wink today, and she finally just dozed off. I had to turn away the respiratory therapist so Kaia could sleep. She'll be back in 20 minutes. 20 minutes? That's all they're letting her sleep? I've successfully kept the nurses from giving her morphine all day. She's doing fine on tylenol and some tweaks in her position and clean diapers (she HATES soiled diapers...will NOT tolerate!). She had an echo on her heart today that showed a narrowing of a vessel that is not allowing a steady flow of blood to her lungs. They're gonna watch it closely to see if it's a problem. Let's hope it's not, because we can't do another surgery right now. Heck no.

I had a meeting with all of her doctors today. There were 7 of them from all areas of the spectrum. I voiced all of our concerns about the excessive X-rays (like 3/day) and they are going to do one big one each day instead of all these separate ones. She's had over 100 at this point. I'm worried about radiation in her little body. I put the nix on morphine and other heavy hitting drugs that she doesn't need. And I requested more and better communication. they were all super helpful and supportive of our wishes.

Looks like we will be here for several more weeks though. We were originally supposed to be out probably today, but by friday. Now we are here for way longer since her arrest the other night. Please pray for a speedy recovery so we can cut our stay down to a week or two! I can't stand it here. It's so depressing.

thank you all for all the supportive comments and for reading. I am still amazed by how many people care what happens to her, when not many of you have ever met her. She's a precious little wonder, and I am amazed by her strength and tolerance.


  1. Thanks for keeping us all posted, guys. You guys stay strong and tough and we will all keep praying for a quick end to this nightmare and to get you all three home! Hang in there, guys...

  2. Steph- thanks for keeping us updated. We are sending little Kaia so much love and strength. She is a blessing. I know it is hard to get your fill of wholesome foods which you need, so I would be happy to bring you your favorite smoothies, fruit salad, etc. Let me know if you ever feel like a break from what you have there. You and Eric are doing all of the right things for her and you are such great parents- Kaia knows this:) A group of women who pray together made Kaia a prayer blanket and it was blessed my Father Jay from St. Helens church. They have a prayer list for Kaia that has grown into other countries. She has a lot of love being sent constantly. Take care of yourselves and let me know if I can help. xo-kim

  3. Steph...hang tough. Your little girl is a gift from God and he will help to sustain you through this terrible time. Aunt Tina is keeping us posted and we will keep you in our prayers. Kaia is a strong little lady. Keep your faith and know that we are all praying for you. May God's grace be upon you at this time.

  4. Hi Stephanie,

    What a small world - i am sure Kimberly told you but I teach yoga at Inner Bliss along with Kimberly. Anyways she has been asking us all to keep her new little niece in our prayers because she has been sick and i just found out that is your little baby! I am keeping you in my thoughts as well as Eric and ouf course, Kaia.
    Justin sends his love as well! I look forward to meeting Kaia once she gets out of the hospital!

  5. Hi Steph & Eric,

    I'm still here for ya and always will be!!!! I want to Kiss Kaia!!!! And you two also, hopefully soonXXXXXXXOOOOOO. Let Kim know about that fruit salad, that's my specialty!!! Prayers continue to come your way from many many friends and family!!!!
    Love, Aunt Tina