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Rest & Recovery

Ruby is on R&R today.  We are mostly focused on keeping her comfortable so she can sleep and heal.  We're not going to challenge her today and we want the ventilator to do most of the breathing for her, since she has stitches in her diaphragm.  We're keeping a close eye on her urine output, but it has been increasing.  We're waiting a few days for her stomach and bowels to settle into their new home, but as soon as she poops, we'll know the plumbing is clear and we can start feeding her through her stomach tube.  For now she's still on intravenous HAL & Lipids. 

Her chest x-ray after the surgery looks awesome.  I wish I could post them for everyone to see, they're so unbelievable.  Once they got her stomach out of the way, her squished left lung unfolded and appears much larger than we anticipated.  Only time will tell how efficient and effective it is, but without a doubt it is contributing to her respiration.  

Here is how she looked immediately after surgery.  Yes, that is a butterfly-shaped bandage on her tummy.   Apparently, being a world-class fetal and neonatal surgeon isn't enough, so you have make it a little more challenging by cutting bandages into pretty shapes.  The doctor saw the butterflies on Ruby's poster that the people at my work sent  and she used that as inspiration for an artistic and functional bandage on top of her surgical wound. 

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She looks fantastic! Her

She looks fantastic! Her color is great. What great news! Keep us posted, and as always, we're praying for Miss Ruby and the you guys!

What wonderful news! Thank

What wonderful news! Thank goodness that her surgery went well and she's recovering now!

So happy to hear that things

So happy to hear that things are going well and that the left lung is larger than you expected! Love that bandage - what a great surgeon! Continue resting and recovering, Ruby!

Woo-hoo!! I'm so happy that

Woo-hoo!! I'm so happy that the surgery went well and that things are looking good. :) Keep up the good work, Ruby!!

- Jenn

Amazing! Ruby looks

Amazing! Ruby looks fabulous! LOVE the butterfly bandage!

Karla
Braden's Mom

I love the bandage! What a

I love the bandage! What a wonderful surgeon. Y'all absolutely did the right thing in going to CHOP. Like you said, Chris - world-class! That is also so great to hear about her left lung, who knew it would listen when we were all cheering for the right lung! Hoping she keeps improving day by day...love and hugs from IA

Wow, Ruby already looks like

Wow, Ruby already looks like a different baby. Well done little one! We are so pleased that she's doing so well. We are sending positive thoughts for further lung expansion and for poos.
PS: love the butterfly

I am so, so pleased for you

I am so, so pleased for you all! Ruby looks fabulous; and you'd never know she'd had such major work done - especially not with such an awesome bandage!

Gosh, I'm crying and I don't

Gosh, I'm crying and I don't really even know you. I'm so happy for Ruby. I noticed the butterfly bandage immediately. It shows how much the surgeon really cares for your baby. I also notice how small her incision appears to be. It's amazing who surgeon's can do so much with such a small opening. Sending best wishes and hope all 3 of you can rest comfortable for the next few days.

I am sooooo happy for you

I am sooooo happy for you that things are looking up. So happy.

Reading that about the left

Reading that about the left lung unfolding and being larger than anticipated, I couldn't help but think of the Monarchs that migrate down to Mexico and how big their wings are compared to the tiny Chrysalis they emerge from.....God does not cease to provide wonders for us, does He?

I know it may be several months still, but I cana't wait to hear that Ruby will be leaving her Chrysalis at CHOP and fluttering down to the life waiting for her in Austin.

For now, you might want to get as much rest as you can... as much spunk as she's got there is no such thing as child-proofing your house! ;-)

Grandad's right she is "Beautyful"!!!

Sounds like good news about

Sounds like good news about the unfolding lung!
Hope Chris & Holly are getting some R&R, too!

Peaceful dreams Ruby! Keep

Peaceful dreams Ruby! Keep working on using and strengthening that left lung!

She looks wonderful! We are

She looks wonderful! We are all thinking of you and have your next round of goodies ready. Just shout when you need them.

Ben has been explicit about praying for Baby Ruby every night and last night asked me how to spell "B-A-B-Y R-U-B-Y". So I think when she's feeling better, her first boyfriend is ready to meet her.

Take care. Get some rest - all of you!

Brad

You go Ruby!! That

You go Ruby!! That butterfly bandage is a lovely touch.

Many prayers for Ruby!! The

Many prayers for Ruby!! The good news of the chest xray is very encouraging and I hope Ruby keeps making progress.

Thinking of you, Tracy - Ian's mom

I have been praying for you

I have been praying for you constsntly and wanting to be there for you but not possible She is BEATYFUL and will grow up to make us all proud of her take care of your selves as you will want to enjoy every moment you can now but will also need to be able to care for her later too please keep me on the receving end of all the news great grand dad lewis

I have been praying for you

I have been praying for you constsntly and wanting to be there for you but not possible She is BEATYFUL and will grow up to make us all proud of her take care of your selves as you will want to enjoy every moment you can now but will also need to be able to care for her later too please keep me on the receving end of all the news great grand dad lewis

The butterfly bandage

The butterfly bandage actually made me cry. You guys so made the right decision to have her at CHOP, she's in the best hands ever, you are such amazing parents. I'm so emotional right now, I'm sorry...I just feel like this is an uphill positive road from here, and I'm awaiting the day you guys to get to hold her for the very first time...and take her home to Austin.

I love that her left lung is bigger than anticipated, I hope hope hope that it is in excellent shape and there are no more complications and surprises.

All our love from the 'Lou - you are all in my thoughts almost every moment of the day.

Tami, Chuck, and Aisling

Oh, she looks so beautiful!

Oh, she looks so beautiful! Love the bandage! Rest up Ruby, we can't wait to see you back in austin!
Hoping mom and dad can rest a bit easier now too.

You both don't know me, but

You both don't know me, but I have been checking up on Ruby every day. My very best friend's baby has been diagnosed with CDH and her baby will be delivered at CHOP in July. She told me of Ruby's website and your blog, and like I said I have been checking in everyday to see her progress.

Rest up sweet Ruby! You are a trooper and I pray and think of you every day and will continue to do so!!!! I wish you all the best!

I'm sorry I'm so emotional

I'm sorry I'm so emotional right now, but Ruby is meant to be here. She has a purpose on this Earth. We don't know what it is yet, but she is here to stay! Hugs and Kisses all around! Sarah

Awesome, I am praying for

Awesome, I am praying for your little Sweet Ruby!! Was so glad to hear the surgery went well!! She is beautiful!! May God continue to bless you all!!

Sissy
Nashville, TN

I hope that the next few

I hope that the next few days are nothing but calm and uneventful. I noticed the butterfly bandage right away - so sweet and kind and hopefully representative of the change that the surgery will signify for Ruby.

Keeping you in my thoughts.

What wonderful news! Rest up

What wonderful news! Rest up sweet, Ruby. Love, Natalie

We're so happy she's doing

We're so happy she's doing so well! The butterfly bandage is wonderful and very touching. Sending you hugs and kisses and our best thoughts and prayers Ruby! You go Girl!

Sending Butterfly kisses to

Sending Butterfly kisses to Rockin Ruby! Ruby, just rest and relax today. Let your body heal and get ready for chasing butterflies later. Continuing prayers for Ruby (and her parents).

Mark & Roberta

I am so glad to see Ruby

I am so glad to see Ruby looking so well. I hope you two are giving yourselves a day of R & R as well. If Ruby needs it, I know you both do too. Be good to yourselves, Ruby is going to need you both to be in top form very soon. Give her a big kiss from the neighbors!

Marilyn

Hurray for Ruby! What a

Hurray for Ruby! What a precious Gift! :)