Sunday, December 16, 2007


Update: Ava had a stat upper GI today (Monday, December 17, 2007)because the docs can't figure out why she can't stop vomiting. She's even vomiting in her sleep, poor baby. Our feeling is that she is being overfed, but the experts don't agree. They are keeping her yet another night for observation. We are praying that she is better soon. She deserves better than this.

Ava is still in the hospital. The poor little thing keeps falling through the cracks, so to speak. Someone "forgot" to write orders for her pain meds, consequently her morphine was taken away and replaced with simple Tylenol. Every time she moves she does that silent scream that tells us she hurts so bad she can't even speak. She has been retching and vomiting. Her g-tube keeps backing up. Her doctor has the bedside manner of Hannibal Lecter. Michigan is in the midst of a wicked snowstorm that is threatening to paralyze traffic. And Ava's birthday is five days away.

What have we done?

Ava's hospital stay hasn't been all bad. We were blessed last evening with a wonderful nurse, Martha, whom Ava loved immediately. As soon as Martha said hello, Ava started smiling and blowing kisses to her. Also, some angel saw to it that orders were written for Tylenol with codeine, which really seems to help. To top it all off, John, the host, brought Ava a VCR and a collection of Barney videos, which she seems to adore. Boy, does that bring back memories! That purple dinosaur is going to live forever.

Best of all we have been receiving great advice and moral support from Danielle, a WS mom from Michigan who is an amazing source of information. Her little girl has been through this exact procedure, so Danielle has practical advice that is invaluable. Still, we are second guessing the decision to have this surgery. How do you know you did the right thing?


Nancy said...

It is really, really hard for me not to be PISSED when I see what she is going through. I hope that by Christmas things will have improved and you will all have a wonderful holiday. I am keeping Laura, Ava, you, and your family in my prayers.

Anonymous said...


I Want Ava To Get Better

Melina's Mommy said...

Just wanted to post in response to your question about how do you know that you made the right decision? As parents, I don't think we ever know if we made the right decisions in regards to our children, but you just have to trust in your heart that you, Ava's family know her better than anyone else. If you felt that surgery was the right thing for her than it probably was. No one knows her better and I know that there is no way that any of you would ever do anything to harm her. I second guessed my decision after Melina's surgery too. It is a hard thing to go through. But, Melina made it through and is doing wonderful today so I now think we did the right thing. I am sure you did too. It just might not feel that way right now. I am praying and thinking about all of you every day. Please let me know if you need anything.

Danielle, Danny, Melina & Alyssa

Heather said...

What a little trooper you have there. So glad to see her still smiling! I'm thinking of you all and hoping for a speedy recovery. She is just beautiful :) Don't second guess youself. I know it must be hard while she is in pain to not wonder if it was the right desicion. But it was. She will get better. She is still smiling :)

Julie said...

I wish there was something I could do to help her. Poor little thing. I will keep you guys in my prayers.

Gina said...

We are praying that little Ava has a quick recovery-she is in our thought and prayers.

LindaD said...

Oh Kim I'm so sorry for all Ava is going through. Please don't second guess yourself, this will work for Ava you just need to get over the bumps in the road. Please know that you can call me anytime if you need someone to talk to. I am praying that Ava gets better soon. I know that Melina retched a lot when her rate was set too high. She came home from the hospital at less than 30 cc's a hour. Her little tummny just couldn't take that fast of a drip even though the doctors wanted it higher. The retching got so much better when Danielle adjusted it by how Melina reacted to it. Just a thought.
Hugs to sweet little Ava.

Nancy said...

You are in my thoughts and prayers. I love you guys more than you will ever know and hope that this will benefit Ava in the long run and make her life easier and more comfortable. You are doing all you possibly can and are such an amazing family.

Thanks for the update.


Kerry said...

Don't second guess yourself - it was the right thing to do ~ I am so sorry you have to go through this stuff. She is such a little trooper though and she is in our prayers over here.... please keep us posted.

Laura said...

The poor baby. It's so hard to see our baby's in any pain or discomfort. I hope she feels better soon.
You all are in our thoughts and prayers every day!
You couldn't ask for anyone better than Danielle and Melina for comfort and support, they are both beautiful!

Amy said...

Please give Ava, and her mom and dad, and you too a big hug from me. I hope everyone is doing better today.

Tara said...

I am keeping Ava and all of you in my prayers. I can't believe what all she is going through. She's a tough little girl....and I can't imagine how hard it is to watch her in so much pain.
Thinking of you and hoping today is better.

Nicole said...

I will continue to keep Ava in my prayers. You are all so strong and I just know things will get better soon. Thinking of all of you.

Ava Jewel Leilana said...

We wish you all the beauty, cherished traditions, and joys of this lovely holiday season. May you be surrounded with the things you hold dear and enjoy most, now, and throughtout 2008.
Merry Christmas and Happy New Year from both of us - and remember that broken cookies aren't fattening!
Warm regards
Ann & Ava Jewel xo

Teresa & Shawn said...

I am just now updating on all my blogs. I knew Ava's surgery was coming up and have been keeping her in my prayers. I am sorry to hear that things are not going well right now. Please know that we are sending lots of prayers, love, and support from snowy NH. Ava's birthday pictures were precious. You WILL see that beautiful smile again!!

Katie said...

Ava, Oh baby girl we love you so much, you keep on smiling so beautifully for your Mommy,Daddy Uncle and Grandma. Soon this will all be a bad dream and you will be safe and sound back home.
Kim, dont EVER feel bad for decisions that have been made in Avas best interests - as these are the right ones.
take care,