Updates will probably come from me during the week. Chris is taking advantage of the rest days and working.
Ruby's lungs have opened up again! Her latest x-ray looked better. She has been peeing A LOT. Her catheter bag is getting really full. This is all good news. We talked to her surgeon today. She said that Ruby isn't ready for surgery yet. She still needs the ECMO support. We are just taking it day by day. As soon as she gets a window to do the surgery she will. We trust Dr.HH decisions and hopefully Ruby will give her the signs that she needs soon. While we understand we are on Ruby time, it would make her parents feel better to have her off of ECMO and her surgery done.
Keeping her sedated is one the biggest issues the past couple days. Ruby wants to stay awake and join the party. We need her to rest and not move much. As a parent I love interacting with her. I do understand the need for her to be still. The canulas for the ECMO go directly into her heart. So squirming around is not a good thing.
Yesterday was a tough day for all of us. Some days it's harder than others to stay positive. It's especially hard when Ruby throws a curve ball at us and seems to take a step in the wrong direction. It's hard to remember that this is a roller coaster and will have ups and downs.
Ruby's nurse today changed the tape and repositioned the tubes in a different way. We can now see more of her face!
When she is calm enough I've been able to help do parts of her care. I've gotten to change her diaper, take her tempurature, and wipe drool off of her face. Her finger nails are getting kind of long, but we can't trim them. ECMO requires her to be on heprin. They don't want to risk any bleeding. No manicures for Ruby for a while. Helping with her care has really made me happy. it's hard to sit and watch someone else care for your baby. I understand the need, but it is hard. I'm sure in a few months I'll be thinking how crazy i was to be so excited to change her diaper.
Praying that Ruby continues
Praying that Ruby continues to have more and more uneventful days on ECMO. Rest up little girl so that you can say GOODBYE to that big machine. Sending you strength, love, and prayers from Michigan.
Howdy from Austin! Hi Chris,
Howdy from Austin! Hi Chris, Holly & Beautiful Ruby Hope, Thanks for the update Holly, she looks wonderful. We're agreeing with you about the diapers down the road... We're praying for more uneventful days for Ruby. You are all in our thoughts and prayers and there are so many of us here pulling for Ruby and supporting all of you. We hope Ruby is ready for her surgery soon so you can all come home. If there is anything I can send you from Austin, I'd be happy to. Take care and we look forward to your next update. Love from all of us at DMi.
So glad to hear she had a
So glad to hear she had a good day today...two steps forward. And she DOES look like you guys :) So cute. She's very lucky to have such amazing parents.
Hope tomorrow is another "boring" day ;)
Gretchen
Awesome picture! Thanks so
Awesome picture! Thanks so much. She is just beautiful. It seems like she's changed even in 2 weeks, doesn't it? I know she has lost some swelling, but still she's changed. I always think they change so much in the first month or two. She's definitely adjusting to her world! What a sweetie-pie. xoxo from St. Charles.
What a beautiful girl! She
What a beautiful girl! She looks a lot like you, Holly. All kinds of love from Iowa. I'm hoping for many more boring days.
I don't blame her for
I don't blame her for wanting to join the party, but I hope she gets the rest she needs. Very beautiful photo!!
Hang in there all of you!! We're thinking about you every day!
Oh! She's beautiful, Holly.
Oh! She's beautiful, Holly. I hope she continues to rest and get ready for her surgery. Hugs to all of you,
Jenn
She is so beautiful! And, I
She is so beautiful! And, I think she looks quite a lot like her mommy! I'm glad today was a better day. Continued prayers...
Pam
I'm so so glad she had a
I'm so so glad she had a good day. She is simply gorgeous, I love how peaceful she looks here, the swelling is obviously better.
All my thoughts and hugs are coming your way. Here's to more restful and boring days ahead.
Tami, Chuck and Aisling
Ruby is beautiful! I'm sorry
Ruby is beautiful! I'm sorry I've been absent for a bit. We were out of town, but I'm glad to see more news of boring days. I'm so happy you get to help with her care. Don't worry about manicures yet. When she is older, call me and I'll take her for a mani/pedi. :)
Hi Holly, I am so happy for
Hi Holly,
I am so happy for Ruby that she had a good day! She is so precious a sleeping beauty. I love the power of pink she has going on. I am praying that you get a double measure of sleep tonight!
Missy and Larry are right!
Missy and Larry are right! I was just thinking the same thing about similarities to both Chris and Holly. This new photo shows her cuteness so well!
Hang in there you two; send virtual hugs up north...xoxoxo
I sure loving reading about your remarkable journey.
It is truly courageous, and your open and honest online discussions reveal your wonderful capacity for love and acceptance and patience....just what any little child needs. Holly and Chris, my heart goes out to you both daily...
Rest, Ruby, Rest....rest up for some bigger days ahead...
Love,
Marie Pousson
So glad to hear the "boring"
So glad to hear the "boring" news! Ruby is so beautiful!
Karla
Braden's Mom
Hi guys, I love the new pic
Hi guys,
I love the new pic of her... she is so cute. It seems that this ride hard and very emotional but Ruby is getting stronger and soon the ride will be have more ups than downs.. I will call u tomorrow and see if u are up for a visit.. even if I only see u a small bit.
HUGS
Joanna&Fil
Ruby is a BEAUTY!!! The
Ruby is a BEAUTY!!!
The Power family
So glad to hear today goes
So glad to hear today goes well. SO glad!
Don't know why this didn't
Don't know why this didn't show up in my RSS feed...
Glad to hear the good news. You guys really are taking this one day at a time. And it seems like she is making progress, even though it must be agonizing. I love the picture! She really looks like both of you guys! :)
Hang in there Holly and Chris.
Love,
Missy, Larry and Anthony
Great to hear the good news
Great to hear the good news of a calm day. Hang in there!