We never in our worst fears thought Ruby would be on ECMO this long. She is peeing and loosing weight, but she still has more weight to loose. She's been started on a new diuretic and we're going to see how it helps over the weekend. She is still shunting and on Monday she will have another Echocardiogram to determine if it's due to the excess fluid. Hopefully after that we will know more. It was very hard to not get frustrated and discouraged after our talk with the Dr. this morning. It seems like we are stuck. She can't be on ECMO for ever. It's getting harder and harder to not worry about the worst.
CHOP's network is very inconsistant. Some days it allows us to update the web page and other days it doesn't. Couple that with extreme exhaustion, it's been hard to update the past couple days. We are trying and we appreciate all the support.
We got surprise when we got home this evening! I'm not sure if we ever mentioned what happened with the "Texas Dirt". We did put it under the delivery bed. All of the staff knew about it and thought it was hilarious. When we got to our apartment this evening we found the following waiting for us.
If you notice he stops short of declaring she's a Texan, but it does have the oficiall seal of Texas. I'm betting it's as close as she's gonna get. We're not sure which of our friends pulled this one off. Whom ever did this please know you made our day.
Now for the Ruby picture of the day. I spend most of my day right next to her bedside reading, talking, or just simply holding her hand. It's hard to campture her personality in pictures. It's there under all the tubes and sedation.
Dearest Ruby, Prayers coming
Dearest Ruby,
Prayers coming through for you and your parents from your astrological twin... you can do this Ruby... you are such a special and beautiful little girl. And I loved your official Texan document.
Love,
Elsa
Happy 2 week birthday Ruby
Happy 2 week birthday Ruby Hope! We're sending all of our love from St.Charles, MO. xoxo
Hang in there!! Children
Hang in there!! Children seldom do what their parents want, when they want. She is preparing your for the teen years... Debbie (Tim's sister) PS- I think your cats love Hector now.
Still praying for Ruby and
Still praying for Ruby and for you guys. CDH babies tend to take things at their own pace. I'm sure an ECMO-free world for RUby is juat around the corner. I'll keep praying.
Bethany
I am praying that Ruby is
I am praying that Ruby is off of ECMO soon. And the certificate, that's awsome!
I love the certificate, that
I love the certificate, that is awesome!
Sending love and healing vibes that she is able to stop the shunting and get ready for coming off ECMO when the time is right. It's amazing how much a little extra fluid can throw other systems out of whack.
Tell us about her personality, Holly. We've caught glimpses already, but I'm eager to hear more. She's gotta be one heck of a personality already - I mean, look at her parents. :)
All our love from the 'Lou-
Tami
Ruby is so beautiful! We
Ruby is so beautiful! We hope that she continues to pee and that she won't need to be on ECMO for too long.
I have not posted here ~ but
I have not posted here ~ but I have been following little Ruby and just wanted tell you I have been praying for her watching for her updates every day. She is so beautiful!!!
sending love and courage
sending love and courage your way-- hopefully today is a good day.
I have been watching your
I have been watching your blog from the beginning and keeping little Ruby in my prayers. I pray that she has the strength to get all the fluid off and control the shunting. My daughter, Addison, lost her fight to CDH on March 11, 2009 after 22 days of fighting (10 on the oscillating vent and 12 on ECMO). I am sending lots of love and prayers your way!
Now we will pray that she
Now we will pray that she will stop shunting and lose all the weight that she needs to lose:
"Be gracious to me, O Lord, for to you do I cry all the day. Gladden the soul of your servant, for to you, O Lord, do I lift up my soul. For you, O Lord, are good and forgiving, abounding in steadfast love to all who call upon you. Give ear, O LORD, to my prayer; listen to my plea for grace. In the day of my trouble I call upon you."
Stay strong guys. And OMG, I
Stay strong guys.
And OMG, I love the certificate! :)
Love you guys.
Missy, Larry and Anthony
Loved the booties, love the
Loved the booties, love the Proclamation...
And of course love to the three of you up there! Words fail when I think about all that you and Chris are managing to keep together for your little girl. Sounds like a really, really tough and frustrating day today. Sending all good thoughts and energy to Ruby tonight.
Peace,
Tara
What a sweet little thing.
What a sweet little thing. Even if they won't call her a "Texan" she is and always will be. Thinking of you and looking forward to coming up there to see you three. Love and hugs from another Texan by way of Iowa.
Amy
P.S. I didn't arrange for that certificate, but man, I wish I thought of that.
Hang in there!!! You're
Hang in there!!!
You're doing an awesome job! You're doing exactly what Ruby needs you to do, just be there. Sending positive thoughts your way.
Hi guys, Sorry Ruby is
Hi guys,
Sorry Ruby is still on ECMo... hope she is doing better today! We will continue to keep her in our thoughts and prayers! Hang in there!
Hugs
Joanna&Fil