Ruby seems to be tolerating the circuit change pretty well. She has swollen up again, but not as much as we thought she would. The Isoflurane seems to be taking care of her sedation issues. We don't get to interact with her as much while she's on it, since it really knocks her out. It's what she needs to get better. I just miss seeing her eyes open and watching her feet kick around. What's best for Mom isn't always what is best for Ruby. She's still in there and her personality surfaces when she needs it to. Yesterday her Dr. was feeling her chest and Ruby batted her hand away. Apparently she didn't like Dr. H touching her.
Right now one of the surgical fellows is putting in a chest tube. At some point today she will get some surfactant and a new endotracheal tube. We had to leave her bed side for the placement of the chest tube. Hopefully the plural effusion will drain and we can see what her right lung can do. That's the key to getting her off ECMO. She can't safely come off ECMO if her right lung isn't ready to work.
Here is a picture from a couple days ago. I'm not sure which day, we take pictures everyday, but sometimes don't get around to downloading them. You can see where the cannulae enter her neck. Her left eye looks so swollen because they had her on her left side and all the fluid drained to that side. When she is stable enough they move her from her left side to flat to the right every 6 hours. It helps move the fluid and keeps her from getting used to being one position all the time. Ruby favors flat on her back and makes sure everyone knows it. Some days she will even scooch herself off all the props so she is flat on her back. Other days she gets mad and won't calm down until they move her back. I have been doing most of her diaper changes, temperatures, and even suctioning her mouth. Due to the cannulea the ECMO specialist usually holds her hed when I lift up her legs to change the diaper. I'm slowly learning how to maneuver around all the tubes and wires. I will admit it's a lot easier to change her diaper now that she's on isoflurane. I'm starting to wonder how other parents get by without 2 nurses, and a ready supply of narcotics to calm down their babies :)
Chris and I are getting by. Thankfully Diane and Brad have brought Chris plenty of meals and run some errands for us. It's weird how some days fly by and and others drag on and on. There are no windows in the NICU and the constant beeping is very reminiscent of a casino. Regardless of how fast the time goes, it's time we have with Ruby. We are trying to enjoy each day we have with her.
I love all of the pictures
I love all of the pictures you post of her. She is precious! I'm so happy the circuit change went well for her.
Natalie
Go Right Lung Go! Ruby's
Go Right Lung Go!
Ruby's pep-squad
I have been following Ruby's
I have been following Ruby's journey for a while now. It is like watching my son Drew's all over again. You, Ruby and all of your family are in my thoughts. Hang in there, Ruby! You can do it. These CDH kids are amazing and you never know what surprise they have for you next. Ruby, give everyone a good surprise!
www.cdhrainbows.org
I like that, saying a cheer
I like that, saying a cheer for her right lung. Go lungs, go! Go, Ruby go! Love you guys. Amy
Very glad to read that she
Very glad to read that she is ready to have this fluid drained and she can start working out that right lung. Praying and praying for this sweet little girl, that she will get stronger and stronger each day. "9The LORD is a stronghold for the oppressed, a stronghold in times of trouble. And those who know your name put their trust in you, for you, O LORD, have not forsaken those who seek you."
I know it's hard to imagine,
I know it's hard to imagine, but eventually time will pass and she won't need her circuit changed anymore. She won't need any narcotics or sedatives. She won't need tubes or an ECMO nurse. You are both doing a great job keeping up with the constant change AND getting to know and understand your sweet little girl. I'm so glad she is taking the new circuit well and that they are going to be able to drain her chest. I'll do a little cheer for her right lung to get working! (That was on Sesame Street today...how cheering helps people do better) Love you lots! Sarah
Thinking of Ruby! Praying
Thinking of Ruby! Praying that the chest tube and ECMO circuit change is just what Ruby needs to make some "big" improvements. I hope she is finally letting her body rest and not fighting the tubes and medical intervention. Keep fighting Ruby!
Hugs, Tracy - Ian's mom
I don't know why, but for
I don't know why, but for some reason when I say "relax" I think of Zoolander. :)
Hopefully, some time to relax is just what little Ruby needs. She's really a trooper!
Keep kicking butt, you three.
Tons of love,
Missy, Larry and Anthony
Rest, sweet Ruby. Many
Rest, sweet Ruby. Many prayers here for Ruby and her parents.
Mark & Roberta
Holly and Starling, Sarah
Holly and Starling,
Sarah shared the news about Ruby yesterday. I just wanted to let you know that all three of you are in our thoughts. We are only a few hours away in CT, so if you need anything, just let us know. Being a parent is an incredible experience. I am glad that you are absorbing every minute possible. Much love and positive energy to all of you! -- Lauri and Travis
Hi Holly and Chris, Glad to
Hi Holly and Chris,
Glad to hear things are going smoother for little Ruby... I texted u this AM but I figured u had some things going on and could not see us today. Well I will be in SDU on Thursday for my induction so I am sure we will see each other more. Hope you are holding up well through all this. See u soon! Give my love to little Ruby.
Joanna