Ruby had another stable day today. She's continuing to pee and "get skinny" as her surgeon says. She's starting to look a lot more like Ruby again. We can see her facial features. She is also able to interact with us a bit more now that she's more comfortable. It's really cute to see see her feet move around. The Occupational Therapist came by today and gave us some suggestions on things that would calm her. She said that holding her feet and letting her push them against our hands is very comforting for a baby. Couple that with putting your hand lightly on her head and speaking softly to her can sometimes calm her down. I did this a lot today, when the nurse was doing something to her that she hates. Ruby hates to have her mouth suctioned. I would try to hold feet and head when the nurse was suctioning her. I'd like to think it helped. She didn't need any "rescues" today. Maybe it did work or maybe Ruby decided she didn't need any help today.
Being parents in the NICU is hard. There is constant beeping and crying babies. Plus we don't ever get any alone time with Ruby. Due to the severity of her illness she has two nurses around the clock just for her. One is the ECMO Specialist and the other is for her nursing care. Neither of these nurses can leave Ruby's room without someone to relieve them. We spend most of our days in Ruby's 10x10 cubicle with these two nurses. Various doctors and specialists come by throughout the day to check on all the aspects of her care. The NICU is a very busy place. It's very tiring to sit in there all day long. We, however, want to be with Ruby as much as possible. I hate the fact that she might open eyes and one of us not be there. The long days are starting to wear on us. We left a bit earlier than normal this evening with hopes of getting a bit more rest. Ruby will hopefully have surgery at the end of this week and when that happens I'm sure we won't have the luxury of getting some extra sleep.
As for her surgery. We mostly likely won't know when it will be done until the day of. Her doctors evaluate her several times a day and when they see the timing is right they will jump on it. Please don't ask us when she will have surgery. When we know we will let you know. Until then we are waiting. We also don't know if she will be taken off ECMO before or after her surgery. Again the doctors haven't decided yet.
This evening before we left I put another pair of booties on Ruby. These tie on. Hopefully she won't kick them off as easily.
Ruby Dear Ruby how do you
Ruby Dear Ruby how do you do
There's a lot of people praying for you
So get your rest and heal up real soon
Cause your Grandma and Grandpa think
you hung the moon!
Hi Holly and Chris, I am so
Hi Holly and Chris,
I am so happy to read that Ruby is doing well and continues to be stable. I hope that Ruby will have her surgery soon. I'm praying for her.
I love the booties. So cute.
I love the booties. So cute. Ruby is beautiful!
Natalie
Life in the NICU is indeed
Life in the NICU is indeed very tough. It just makes your time once you get home so the more enjoyable. Ruby is absolutely gorgeous. You are in our family's prayers.
Hi Holly and Chris, So glad
Hi Holly and Chris,
So glad to hear that Ruby is doing well and continues to be stable. Ah, yes, those suctions are aweful. One nurse explained to me that it feels as if you had to breathe through a straw- nasty thing really. I used to massage Alina's legs-without oil or lotion, just gently rubbing them, and it did seem to help.
Anyways, just wanted to say that you guys are great parents. We hope that Ruby will have her surgery soon.
We love you and will keep
We love you and will keep you closely in our hearts during these very difficult days.
Lois Smith
Ruby is beautiful and we
Ruby is beautiful and we know that Jimmie and Julie will be doting grandparents. We continue to pray daily for you.
Love, Laree & Perry
Sending healing thoughts and
Sending healing thoughts and prays. I do hope that Ruby Hope does get her surgery this week. I'm sure she will do much better once her itty bitty parts and pieces are in the correct spots.
Hi Guys, Thanks again for
Hi Guys,
Thanks again for allowing us to spend a little time with u and precious Ruby.. she is such a sweet and beautiful baby. I am glad she continues to improve and is losing fluid! Take care of yourselves! I am not sure if I will see you Friday depends how long our appt is since Fil has to work but I will text u if we can. U are always in our thoughts and we r here if u need anything.
HUGS
Joanna and Fil
Ruby looks a lot of better
Ruby looks a lot of better and getting "skinny". Hope she keeps doing what she is doing and gets stronger every day for her surgery. Praying for your little girl!! Keep fighting Ruby!!
Much love - Iracy, Ian's mommy
Holly and Chris, you are
Holly and Chris, you are doing hard work all day long and I can tell that it's difficult being in such a constantly busy place. I'm praying for some peace and quiet for you both, quiet time with Ruby that will come when she's better and able to just snuggle with you. It will happen! And about those booties, the whole kicking off booties thing is sooooo normal. My mom made booties like the ones in the picture for my kids, because only the ones with ties will stay on. There's a wise knitter in your circle of friends.
Love and prayers from Austin,
Ann
Hello I am another CDH MOm
Hello I am another CDH MOm and I'm not sure we have "web-met" yet. My daughter was born in 2006 at CHOP. We live in Iowa. She is still struggling with the effects of this nasty birth defect called cdh. Anyway I wanted to pop out and say hello and that your little Ruby is in my prayers. Hang in there Mom and Dad. I'm so happy to hear she is breastfeeding. THAT is a huge accomplishment for these kiddos. Don't give up on that Ava BF exclusively. God Bless.
~Terri
http://avaslifewithcdh.blogspot.com
http://cdhawarenessvideos.blogspot.com
http://allmiracles.blogspot.com
Those aren't
Those aren't Booties...
They're Rock Socks!
You gotta tie em on 'cause *Ruby* *Rocks!* In fact she rocks so hard she tends to rock her own socks off!
Keep on Rockin!
We're sending some aloha to
We're sending some aloha to all of you tonight! Big hugs for the sweetest bambina, miss Ruby - she is absolutely beautiful. You two are already amazing parents to Ruby... your patience and love are felt by all of us when we read your updates. Know that even in the hardest minutes, we're thinking of you, and know that with each day your love just grows stronger for Ruby and one another.
I Love the new booties. She
I Love the new booties. She looks soooo cute!!!!
Love the booties. She's
Love the booties. She's adorable, as usual.
Hang in there, guys!
Love,
Missy, Larry and Anthony
Hi there! Ruby looks so cute
Hi there! Ruby looks so cute in those stylin' booties. I'm sure you are doing wonders for her. Ruby probably loves it that you are there while she's having to deal with that stuff! It's so hard to figure a baby out, especially in your situation. Every baby is so different. The first 8-12 weeks is generally just getting to know what they like and what they don't like. You are doing great! Kiss Ruby for me! xoxo Sarah
I absolutely love her
I absolutely love her booties!!! She is looking so much more like herself when she was born, it's so good to see. But regardless of the swelling, she is (and was then too) beautiful. I love that she's interacting with you, that's such a good sign.
It's got to be so tough to not have any privacy or alone time with her. That will come, it will come soon, and you will be able to soak all of her up. I imagine you'll never want to put her down, and you know what, that's perfect! Who can blame you? I can't wait for that day for you and Chris.
Next step - surgery....on her schedule. I'm thinking of you three and will be as patient as possible to hear how it goes. :) All of our love from the 'Lou...
Tami, Chuck, and Aisling
What a sweetie little Ruby
What a sweetie little Ruby is!!! :-) Love the new booties. Praying for more stable days.
Ashley
Now that is a precious baby.
Now that is a precious baby. Glad to hear Ruby had a stable day today. We continue to pray for her and you and Chris, especially that you and Chris will have an extra measure of endurance. "Love bears all things, believes all things, hopes all things, endures all things."
Jordan still likes to put
Jordan still likes to put his feet on us and push us off of the bed. Ruby has such a sweet face. We are cheering for her back in Austin.
Look at those precious
Look at those precious little feet! Love and hugs from Iowa. Ruby's on her schedule, she'll let everyone know when it's time for surgery. See you in a few weeks! Amy