Thursday, July 28, 2011

Update - Day 1

First off I just want to say THANK YOU to everyone who has reached out to us here, on FB and everywhere else they've been able to do so.  We very much appreciate each and every effort even if its just to pop in and read on how Payton is doing.

There's not much to add to what I wrote earlier.  In the end, Payton lasted on her own for about 1.5 hrs.  By then she had tuckered herself out and was too tired to keep breathing on her own so her oxygen levels started dropping and that's when they hooked her up to the Ventilator. 

She's currently on a setting that would be considered moderate in so far as pressure is concerned but is still breathing room air quality (ie they aren't giving her any more oxygen that what is found in air).  She's doing about 30% of her own pressure while the vent is doing the rest.  They did say that they have given her a bit more help than she possibly needs but mostly so that she's not maxing her effort each moment and this hopefully will allow her to rest and build up her strength.

From what we've read each CDH baby goes through a 'Honeymoon' stage in the 1st day or so and this was reiterated to Dwayne by the doctors.  So the next couple of days will really let us know how she's handling things (today may be the best she is for the next few days).

They have said if all continues along this 'good' path then we could be looking at surgery as early as Monday but its possible it could be put off for up to 2 weeks.

Here are a few pictures and a video.  These are early pictures and we haven't gotten any yet of her hooked up to her vent...mostly because at this point she's becoming sensitive to external distractions so they have her room darkened and door closed to keep out light and sound (not the greatest for pictures).

Hopefully tomorrow I'll be much more mobile and I can spend extra time with her (rather than the quick bed fly by on my way from recovery and a quick trip down in a wheel chair at about 8:30pm tonight.

We are so incredibly proud of how well she's doing so far and so very thankful that she's meeting the hopeful expectations of her condition.  We know there are a number of hurdles ahead and we know that her recovery will be a rollercoaster for both her and us but we are so thankful that she's had such a promising start and we got to see so much of her from the get-go. 

Sitting back patiently and waiting to see how well she's breathing.

Daddy picking her up.

Its all coming back to Daddy - all new for Payton and she's letting everyone know.

Big protesting mouth like her sister had on her 1st day.

Mom, Dad and Payton photo op.

In the NICU still breathing on her own and still crying.

Tuckered out...still breathing but not long now till Vent is added.

A bit of video showing Payton after they removed her from the delivery room and into the NICU.  She's still breathing on her own here (did for ~1.5 hours) but soon tuckers out after all giving it her all.

9 comments:

Dixie Harvey Mesa said...

Oh my word, she's so beautiful & just look at how strong! Go Payton!

Anonymous said...

She is beautiful !!!!! Reminds me of her big sister. She looks and sounds like she will be a good little fighter and ready for her next journey. Can hardly wait till she's home and I can come and see her. How I wish I lived closer!!! I do hope your recovery goes well Renee and you're up and about soon but do get that much needed rest. Dwayne, you are amazing. I am so proud of you and your little family. Lots of love and wishes, Grandma Helen

Silverdollar said...

I see in Payton that same vivacious fighting spirit that I see in many of my little NICU graduate patients.
-Taryn

Jess C said...

She is simply beautiful! I can't wait to hear more about her fighting spirit, and meet her when we come down again!

Anonymous said...

Good Morning, Renee
Payton is Beautiful - just Perfect!
Renee, you look marvelous!!
Thank you, - for the excellent updates - greatly appreciated.
Love to All, Auntie Bev

Angela, Tony, Mattiaus and Marcus said...

She is here & what a great start, she is beautiful!! Truely a blessing that she was breathing room air for as long as she did, your husband got to hold her and you all spent some time togther. And *yay* for her being fiesty! Another CDH babe that will do their own thing, when & how they want to :o) We are so happy for your family. Take care, Angela

Unknown said...

Renee and Dwayne, your daughter is gorgeous! What a sweetie. So vivacious and such a fighter - congratulations. I loved the photos and the video - they made my heart melt. I'm so glad that she did so so so well and that you all got to spend a little time together.
Love you!
Meg

Shannon said...

She is so cute! And strong. You can tell she will be a fighter. My sister was Born with CDH and is now a healthy 6 and a half month old. Be strong Payton. Prayers go to Payton and her family

Kim Stegeman-Lowe said...

Congratulations Renee, Dwayne, Liv and baby Payton. Thank you so much for the updates and photos. It sounds like she is doing very well and hope she gets stronger every day. Much love, Kim, Ian, Marin & Kate