Quick update

>> Sunday, July 5, 2009

We have made it 19 days and it seems like a lifetime already. It's harder because I just don't see any real progress being made with Kamryn. Kamryn is still on the conventional ventilator and her peak pressure setting has been between 22-25 for so many days now. The number of breaths that the machine helps her with each minute (rate) has been between 50 - 60. They tried again to bring the rate down yesterday and her CO2 is back up in the 70's. This becomes more frustrating as each day passes. Honestly, there just doesn't seem to be any light at the end of this tunnel because we just stay stuck. They try to lower the rate, CO2 goes up, we chase her by raising everything up again, and we are back to where we started. We do this routine every couple of days.

On a positive side, she has handled her feeds well and today we will go up to 2ml/hr. This is roughly 1.6 ounces over a 24 hour period. Not a lot, but it's a start.

She was alert yesterday for a couple hours and even tried to smile a couple of times. I hope she will do that more for me today when I am up there.

The doctor didn't come by yesterday while I was there so hopefully I get a chance to talk with him today. I'll let you all know how that meeting goes.

Shawn

5 comments:

Carissa July 5, 2009 at 12:27 PM  

Hey guys...I just wanted to let you know that we feel your frustration. All of this is so hard to watch. The progress is slow and we would do anything to make things move faster. Just remember that we walk side by side with you as we all move towards bringing these gals home.

Carissa

Elizabeth July 5, 2009 at 12:39 PM  

Sometimes these babes take time - recovery and progress for each of them is so different. She is tolerating feeds and that is progress!

Just went through Noah - healthy going through surgery and it was simple but even that there are frustrations. I hope Missy soon rebounds and astounds you all!

Keeping you all in my thoughts and prayers and sending those imfamous Lung Function Chants!
Elizabeth

Anonymous July 5, 2009 at 3:20 PM  

Hi guys!

I am silently reading your blog.... I am sorry that things are at a stand still right now. I hope that things pick up and real soon.

Hang in there!!!

Lotusflower (IVFC)

The Vierig's July 5, 2009 at 7:08 PM  

prayers for your little princess... that she will continue to fight hard!!! They call it the CDH rollercoaster for a reason and she has kicked butt thus far. Keep up the lovin and positive vibes!
Kristen
mother to Bodee (LCDH)

Mamie July 6, 2009 at 4:16 PM  

Dear Shawn and Stephanie,

As I read your blog and get caught up on all that has transpired, my heart goes out to you and your family. First, I would like to wholeheartedly congratulate you on the birth of your beautiful daughters. Wow, what a blessing! You have been on my heart since the day I first learned of your pregnancy and even more so when I learned about the challenges that were ahead of you. I continue to pray for your strength, your daughter's health and wisdom for the doctors who have been so amazing.


Keep Lookin' UP!

Mamie

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