Ruby spent 26 days on ECMO. During that time she had to look up and to the left to see us. The first few days after she was taken off she would only look up and to the left. In an attempt to get her look down and right we hung a toy duck from a string above her bed. We also tried to only approach her from the right. It is all slowly working. She now looks all around. She won't turn her head to the right on her own, but we're working on that. During her OT sessions we learned some stretches to help with her torticolis (fancy name for ECMO neck). We do the stretches with her a couple times a day. With the stretches and the duck we hope to have her turning her head to the right on her own soon. We also learned some massage techniques to help her neck and to calm her down. Ruby does love her duck. She has started reaching out for it and batting it around
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Ruby had another good day today. They weaned her morphine and flow. She is now at 1.5 liters and 25% Oxygen. Her morphine and versed are still at levels that would knock out an adult, but we are slowly weaning them. She was a little cranky this afternoon after the morphine wean. We are expecting tomorrow to be another cranky day for the same reason. Hopefully she won't be too cranky. If she is she has no problem telling us all about it.
Her PO feedings are going well. She took 14 ml from a bottle this morning. Yesterday her speech therapist switched her to the Dr. Brown's Preemie bottle, and she seems to really like it. She also latched on and breast fed for 25 minutes this evening. The scale didn't work right so we couldn't get an accurate measurement of how much she got. The PO feedings should get easier as her sedation is weaned. Right now she gets her sedation and fed every 3 hours. We wait to give her the drugs until after the PO feeding sessions, mostly becasue she needs to be awake to eat by mouth. She does get pretty cranky when she needs her morphine. Hopefully soon everything will come together.
Now for a couple very zen Ruby pictures to help us all relax or wish we got a dose of morphine every three hours.
Yes she is sleeping in her boppie. Yes we know not to do this at home. It is however one sure fire way to get her to calm to down. The simple fact that she is attached to monitor like the one below, makes it OK.
Thanks for checking in to see how Ruby is doing. Chris and I really do appreciate all the love support we have received. Some of you asked what we need or if there is anything they could do. We would like to encourage everyone to go donate blood. While on ECMO Ruby recieved transfusions at least once a day. The generosity of strangers helped save her life on a daily basis. As for other things we wouldn't turn down a batch of cookies or giftcards to a certian very well known coffee place. Really, all we need is the continued support of our friends and family.
Hello Ruby, Chris, and
Hello Ruby, Chris, and Holly...
So nice to read how well Ruby is doing! I just want to hug her, hug her, hug her... she is so cute! I wonder if babies understand how precious they are and how much we love them. I can't stop kissing my baby boy and, at only 6 months, he's already showing signs of independence. At night, he doesn't want to fall asleep in my arms anymore! What's up with that?! He squirms, and moves until I put him in his crib. He falls asleep on his own in his crib... Anyway, a big kiss for Ruby and a big hug for you.
Please email me your address. I don't have it.
Alejandra (friend of Frances and Jim).
I am just a friend of a
I am just a friend of a friend, but you have prayers and encouragement and support coming from us daily! Ruby's page is the first I check every day...I'm so happy to continue to hear of her progress!! ~Karen
That is one awesome duck!
That is one awesome duck! Thanks for showing the duck!!
I can't wait to hear Ruby go quack quack like a duck. Make Way for Ducklings sounds like the book for Ruby!!
You guys are awesome and we are proud of you -- you are doing such a great job and it really shows in the photos that Ruby is responding to you. Way to go mom and dad!!
Phillip
We are so happy so see how
We are so happy so see how quickly Ruby is progressing. It sounds like you are getting closer and closer to going home. Love her sleeping pictures, she is soo cute. And the duck is a great idea. Have you tried attaching a mobile to her cotbed? We got one with nursery rhymes and classical music. Alina loved it and it really helped her to start looking around. And she also found it very comforting when we brought her home as it was something familiar.
You guys are doing great. Only those who have been through this know how hard it is. You are fantastic parents and we are looking forward to seeing your first pictures from home.
Hugs from the UK.
Blood donations is a
Blood donations is a wonderful idea!!! Summer brings on a slump in donations and an increased use of blood. Donors are super heros who never see the lives they save or the families they touch.
I have been tranfusing people for over 40 years and know the constant need of donors to maintain a ready supply of blood. A big thanks to all who donate !
Holly - congratulations on
Holly - congratulations on making into the NYC Marathon! It's so wonderful to see that Ruby is doing so well - progressing with her feedings, her med weaning, etc. Go Ruby!
Pam
Love the duck!! And I'm
Love the duck!! And I'm totally loving Ruby's very cute dress in photo #1 and #2. She's quite the fashion plate :) So happy to hear the feeding is going well! And don't feel you need to explain the boppy sleeping - you do whatever you have to do to make that girl comfortable!! She deserves a comfy sleep with all that hard work she's doing!
Ruby is not only beautiful,
Ruby is not only beautiful, she is absolutely amazing. Such a strong little girl! I just love checking in on her. She's part of the CDH Family, how could we not peak in on her? Oh and for the record, Jaime sleeps in his Boppy, too. He prefers to sleep on his tummy with Z-flo pillows under his feet and his arms dangling over the side. We're pretty sure this, too, would be frowned upon outside in the "real world."
Wishing for Ruby to have continued progress!
Hugs from the Cincinnati RCNIC,
Sheryl
Also headed your way: a
Also headed your way: a small stack of New Yorkers and some super cute burp cloths. :) She's looking good, my friend. I am so happy to hear that she is all about the duck.