Time to take a break....

>> Thursday, July 9, 2009

I have been pretty distracted today by my daughter's condition, but also with another CDH baby who really needs your thoughts and prayers. Baby Avery is having a tough time right now with swelling and they are desperately trying to find the cause. I just read that her kidneys and heart seem to look ok, so the doctors are a bit puzzled. This is a wonderful family that has been through so much and are understandably scared out of their mind right now. If you click on the button on the right side of our page for Avery, it will take you to their blog and I know they would appreciate your support and prayers.

This morning started off a little scary when I called to get her blood gas readings. Her CO2 was up to 74. I knew this was going to happen at some point, I was just hoping we could get to a pressure of 20 before Kamryn told us to chill out. No changes were made and her blood gas this afternoon showed her CO2 at 73. She is definitely telling us to chill out with changes to her vent and that's exactly what is happening. The good thing is her CO2 didn't shoot up to the 80's or 90's like it did the last time we hit a wall. Right now, I think she is struggling just a bit to keep her CO2 down with the new settings, but she is tolerating it. This is definitely not a setback, just her telling us she needs some time to adapt and catch up.

I am really excited about her feeding! She is off the continuous feed and has been placed on a schedule of 9cc's over an hour every three hours. The total amount she is getting throughout the day hasn't increased, it's just on a schedule now. The best thing about this is they can check her stomach just before her next feed to see if everything has emptied and sure enough she is processing everything just like she should. This was definitely positive step for Kamryn!

For the first time in 22 days, I didn't go to the hospital to spend time with her. I had a bit of a scratchy throat today and wanted to make sure it was just allergies. It was tough not going up there, but she was in terrific hands with Tamara who is one of her primary nurses.

Here are some pictures of Kamryn's first bath yesterday!




The plan tonight is to let her rest and try to adapt to the new setting and then get a gameplan tomorrow morning after her 4:00am blood gas.

Thanks for all of the continued prayers and support! We couldn't do this without all of you pushing us forward!

Shawn

6 comments:

Tracy Meats July 9, 2009 at 8:57 PM  

Good news on the feeding...how exciting!! Praying for a good restful night for Kamryn and her CO2 levels come down some. I love today's pictures of Stephanie giving her sweet little girl a bath. I can totally relate staying away incase you are starting to get sick, don't want to risk giving that precious little girl a virus to fight off too. I was banned from the NICU after Ian's surgery, for I got a really bad cold and the doctors wanted me no where in the NICU until I was better. Hope it was allergies and you are back up there to see your little girl soon.

Baby steps, baby steps Kamryn...we know you can do it!!! Much love to you!

Hugs, Tracy

Maxton's Mommy July 9, 2009 at 9:35 PM  

I love her little booties!!! TOO CUTE! :-) I have been praying for you guys.

Ash

Liz and Shane July 9, 2009 at 10:47 PM  

Stephanie you look great! I love the pictures of Kamryn's first bath. I am praying for you little one. Get some rest and I hope you are not sick.

Jaime's World July 10, 2009 at 12:02 AM  

I just LOVE Kamryn's socks, too cute!
Awesome news about the feedings...go Kamryn!!! :-)
Jaime had crazy Co2 levels, which seemed like FOREVER! Hers will drop in due time, too! She's an awesome little fighter! ;-)
Hugs and prayers,
Sheryl

Anonymous July 10, 2009 at 6:15 AM  

oh yeah ..... she is a figther alright. That is awesome to hear about her feeding and seems like she is handling the CO2 issues on her own.
Wish i could be there with ya'll but will eventually get out there to see ya.

Jake

Anonymous July 10, 2009 at 11:00 AM  

Love the new box with current conditions. We can't see pictures here at work so I am always excited to go check the blog again when I get home to see them.

Hope yall have a good day and Kamyrn's numbers get better.

Shelley W

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