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Hard Time

Well...
Ruby is now 20 days old and has been on ECMO for 17 days.

Ruby is having a hard time. She is still shunting and very labile. Today is one of the days where it is very hard to have hope. She was not supposed to be this sick. She has plenty of lung tissue. She has severe pulmonary hypertension. We are slowly but surely ruling things out. She is on antibiotics to rule out infection. They are increasing her sedation to see if that helps. The other cause could be that her hypertension is so bad that ECMO isn't helping her. If that's the case the prognosis isn't good. No one is at the point of giving up, yet.

We've all had rough day today.

Our thoughts and daily

Our thoughts and daily prayers go up to God that Ruby will do well, and that He will bless all of you richly.

Scott Baker

These are tough days and I

These are tough days and I know your hearts are aching. Your job is to pray, hope and rest (when you can). I know you are doing that. We are praying with you and hoping with you also.

Praying that this roller coaster makes an upswing real soon.

Mark & Roberta

Our best wishes and prayers

Our best wishes and prayers are with you both and especially with precious Ruby Hope.

Jackie Gregory

Ruby: name origin precious

Ruby: name origin precious gem who brings light into life........ the truth on all accounts . hoping for a better day for you today "precious one"

I am praying for you guys.

I am praying for you guys.

We are praying for little

We are praying for little Ruby! Hang in there Chris and Holly, they say that those little ones can turn a corner very, very quickly.

Sending hope and prayers.

Sending hope and prayers.

I know days like this are

I know days like this are hard. Stay strong and be as positive as you're able to be. Ruby is such a beautiful little girl. We are praying for your family every night.

Oh, Ruby. Come on, sweet

Oh, Ruby. Come on, sweet girl. Relax. There are people around the country pulling for you, praying for you, waiting to meet you. Holly and Chris, we are sending our love and strength to you.

Natalie

Sending you extra love and

Sending you extra love and courage tonight. You, Chris, and Ruby are in my thoughts daily--

I'm sorry that Ruby is

I'm sorry that Ruby is having a hard time getting better. We are praying for her and no matter what don't give up until she does. She will let you know. Joseph also had a lot of lungs but his hypertension was on 100% :(

Fight Ruby, FIGHT!!!

Hugs,

~ Carla- Joseph's mom (2.3.09 -2.26.09)

Pray.

Pray.

I'm so sorry to hear that

I'm so sorry to hear that Ruby is having such a difficult time. I continue to pray daily for her improvement and for you to have the strength you need.
Pam

Praying for Miss Ruby!!

Praying for Miss Ruby!! Severe pulmonary hypertension is a monster too and praying that her shunting will get better. Prayers for you Chris and Holly during this very difficult time. Ruby have a strong night for mom and dad!!

Thinking of you, Tracy - Ian's mom

Ok, Miss Ruby....we get it

Ok, Miss Ruby....we get it honey....you hate the machines and hate the ECMO (who can blame you??)....but come on sweetheart, relax a bit and let your body stop shunting...let your lungs calm down a bit....you can do this!!!!

(((hugs)))) Holly and Chris, hang in there, we're sending you our strength and love. Amy is right, we're riding this rollercoaster with you, we love you three and want everything to be ok. We're anxiously awaiting the day of good news, that she is ready for surgery to occur and/or ECMO to stop.

All of our love from the 'Lou,
Tami, Chuck, and Aisling

when I read today's post, an

when I read today's post, an old song my dad used to sing came instantly to mind...don't know who sang it, but the refrain went something like this:
"when you walk through a storm, hold your head up high, and don't be afraid of the dark"...."walk on, walk on, with hope in your hearts, and you'll never walk alone"....
you are loved, the three of you and all who care for you at CHOP, are loved alot,
Marie

Sending you all love and

Sending you all love and light. And Miss Ruby? BEHAVE for Mommmy and Daddy.

Sending extra love

Sending extra love today...

I know it's hard sometimes, but have hope :). Ruby needs to you stay positive, she can feel the good vibes.

I wish I could be there to

I wish I could be there to give you hugs. Hang in there and be strong for each other. I can't even begin to imagine how hard this is for you. Know that the Pousson family thinks about you three a lot. I love you guys and am just so much in awe of how much love you both have for your sweet little girl. I hope for good news every time I check the blog...in a way, we're all riding this roller coaster with you. Love and hugs from IA.

My prayers to you three. I

My prayers to you three. I had no idea what the last days have been, and just read all 12 pages of your entries. You are truly amazing, and please stay strong in your faith for her health. She is one lucky girl :) Meredith

Praying for Ruby and her

Praying for Ruby and her strength. Sometimes it feels as though your back is against the wall and then you will see the hope and opportunities that are still available for Ruby. (((HUGS))) to you. We are praying for her everyday. Stay strong Miss Ruby. Show those doctors who's boss.

Love,

The Miles Family

Asking all CDH angels to rally around Ruby and give her strength to overcome this hurdle.

I can't imagine what it's

I can't imagine what it's like but know we are sending our love. There isn't a day that goes by that I don't think of her. She's made such an impact on all of us. She's a fighter and so are you guys.

Come on, Ruby!!! Kick this bug's ass!

So much love from us...
Missy, Anthony and Larry.

Holly and Chris, So sorry

Holly and Chris,

So sorry to hear the news.. I don't even know what to say, I know it is so hard to go through this ride.. u want it to end with Ruby responding better. She is tough girl and she will get through this rough day and improve. My heart is with you and I pray that Ruby stops shunting.
All my best,
Joanna

Sending you all good

Sending you all good things...

There are no words.

I know you two are SO strong, and Ruby is a fighter, and I can also only imagine what these days are like right now. It must be so hard to get perspective, and information is hard to come by, and you are sleep deprived and heartsick, and you can't figure out what exactly is causing the 17 days of ECMO. Just want you to know I am thinking of you all, and sending good energy your way, and keeping Ruby in my thoughts and (what passes for) prayers. You are so incredible, to be trying to share this with all of us, and I sure do hope you are getting the love we are sending to you three long distance!

Peace to all,

Tara

Every day I am amazed by

Every day I am amazed by your strength. We are praying that Ruby gets well soon. Love and lots of hope from STL,

Jenn