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Please hug your babies UPDATE page 14
So happy things are looking up!
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Posted 2/24/16 7:53 PM  |
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Dani
Life is about choices.
Member since 5/05 6532 total posts
Name:
Dani
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Re: Please hug your babies UPDATE page 14
Posted by Mommyx03
So happy to hear both babies are doing better!! Praying they continue to improve!!
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| Posted 2/24/16 8:32 PM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Re: Please hug your babies UPDATE page 14
Posted by PaddysGirl
Posted by StaceyWill
Posted by PaddysGirl
That's fantastic news. Keep fighting hard little,girl!!!!!
How's your DD doing?
They extubated her yesterday, stopped her feeding tube, and 2 of 3 sedation meds. We have been dealing with withdrawal. She went on a high flow vent then this morning she went on a cpap. I was finally able to give her bottles of pedialite. We hope to see an end to this nightmare soon. Thank you for asking.
They mentioned possible withdrawal to us today. Sounds awful 
Everyday we get closer to taking our babies home!
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| Posted 2/24/16 8:44 PM |
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Rosie0613
LIF Adolescent
Member since 8/10 875 total posts
Name:
Rosie
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Re: Please hug your babies UPDATE page 14
Fantastic!! So glad both your daughters are doing well!!
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| Posted 2/24/16 9:12 PM |
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J9-13
We're gonna be big sisters!
Member since 6/06 14887 total posts
Name:
J9
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Re: Please hug your babies UPDATE page 14
wonderful update!! So glad that things continue to improve. Sending good thoughts for her EEG. 
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| Posted 2/25/16 8:45 AM |
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wingsofsong
My 3 little loves <3<3<3
Member since 1/09 7395 total posts
Name:
Maureen
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Re: Please hug your babies UPDATE page 14
So glad to hear continued improvement from both these little babies!! Continued prayers!!!
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| Posted 2/25/16 9:29 AM |
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PaddysGirl
Little princess is here!
Member since 4/07 5923 total posts
Name:
Crystal
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Re: Please hug your babies UPDATE page 14
I can't wait till we both get to,take these girls home!
Maddie's respiratory rate is still high, so no more bottles and they are going to put a feeding tube in and she has cellulitis on her foot. Ugh!
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| Posted 2/25/16 12:44 PM |
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BargainMama
LIF Adult
Member since 5/09 15657 total posts
Name:
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Re: Please hug your babies UPDATE page 14
Posted by PaddysGirl
I can't wait till we both get to,take these girls home!
Maddie's respiratory rate is still high, so no more bottles and they are going to put a feeding tube in and she has cellulitis on her foot. Ugh!
Your poor babies!!! I hope they both get well soon!!!
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| Posted 2/25/16 12:46 PM |
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MrsT809
LIF Adult
Member since 9/09 12167 total posts
Name:
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Re: Please hug your babies UPDATE page 14
Posted by PaddysGirl
I can't wait till we both get to,take these girls home!
Maddie's respiratory rate is still high, so no more bottles and they are going to put a feeding tube in and she has cellulitis on her foot. Ugh!
Sending prayers for both of your girls
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| Posted 2/25/16 2:00 PM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Re: Please hug your babies UPDATE page 14
Posted by PaddysGirl
I can't wait till we both get to,take these girls home!
Maddie's respiratory rate is still high, so no more bottles and they are going to put a feeding tube in and she has cellulitis on her foot. Ugh!
.
Ugh that's terrible
Lila still has the nasal cannula but didn't tolerate it when they tried to take it off. She had speech and swallow therapy today. She's not rejecting the bottle but isn't sucking either. She's just so unhappy. It's hard for her to cry bc her throat probably hurts. They said we may be able to leave the PICU tomorrow and go to a regular room. I don't know if she's ready though.
I miss my happy smiley baby.
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| Posted 2/25/16 3:24 PM |
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Dani
Life is about choices.
Member since 5/05 6532 total posts
Name:
Dani
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Re: Please hug your babies UPDATE page 15
oh man.. i really cant stop thinking of you girls.
the only thing that may help you feel a tiny tiny bit better is that these little ladies are so young, they wont remember this. you will never forget it and it will change you forever, but they will have no recollection.
praying for the speedy full recovery of them both!
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| Posted 2/25/16 5:43 PM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Please hug your babies UPDATE page 15
It looks like we're leaving the PICU tonight. I'm a bundle of nerves. I don't know if she's ready. I also feel so comfortable with the doctors and nurses here. They know everything about her and what she's been through. I know it's a good thing because it's one step closer to going home but I'm still so nervous. The doctors know to get me when they're doing rounds, the nurses we've had previously look in to see how Lilas doing. I just hope the doctors and nurses on the regular peds floor are just as good.
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| Posted 2/25/16 6:32 PM |
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cowgirlkate
Twins times TWO!
Member since 1/11 1197 total posts
Name:
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Re: Please hug your babies UPDATE page 15
Just reading this now as we were away and then my whole family was sick. SO sorry for all you are going through. My daughter spent 7 days in Stony brook PICU with RSV at 3 weeks old and reading your original story brought back so many of those memories. Sending hugs your way! Hang in there and hope she is feeling better soon. Please feel free to PM me if you need to vent! I've been there. I had three other children at home waiting for me and their sister, including her twin brother. It was the most difficult week of my life.
ETA: She also spent 3 separate stays in Peds at 9 months old for related complications. The nurses in Peds are great too.
Message edited 2/25/2016 7:56:58 PM.
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| Posted 2/25/16 7:55 PM |
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LSP2005
Bunny kisses are so cute!
Member since 5/05 19458 total posts
Name:
L
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Re: Please hug your babies UPDATE page 15
Thinking about you and your dd. I hope that the regular ped level is just as responsive to both of you. Wishing you strength and love.
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| Posted 2/25/16 11:19 PM |
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Hofstra26
Love to Bake!
Member since 7/06 27915 total posts
Name:
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Re: Please hug your babies UPDATE page 15
Thinking of you! Hope everything goes well once they move her and she continues to recover!!!
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| Posted 2/26/16 8:18 AM |
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Tiggeruth
I am a mom :-)
Member since 6/06 3433 total posts
Name:
Heidi
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Re: Please hug your babies UPDATE page 15
Thank you for the updates. Hope things went well last night.
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| Posted 2/26/16 11:01 AM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Please hug your babies UPDATE page 15
We've moved on up out of the PICU and into a regular room. As much as I'm happy we're on the road to recovery and one step closer to going home, I'll miss that comfort we got from having the same doctors and nurses every day who know her and her history.
They're repeating the eeg right now for about an hour. They might have to do another MRI. Speech and swallow should be coming back to work with her on the bottle and also physical therapy will come by to assess her. She's still very sick- so congested and sounds like a walker. She's definitely more awake though. Just looks uncomfortable. Her voice is starting to come back though. They tried taking the nasal cannula out yesterday but she didn't do too well without the oxygen flow so it's still in for now.
There is a concern that she may have viral encephalitis so add that to the list. It's like never ending. She's not really tracking with her eyes or really close to acting like herself. It could just be that she needs time or she really suffered neurologically while under cardiac arrest. We'll see. We can only hope for the best.
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| Posted 2/26/16 11:55 AM |
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2BadSoSad
LIF Adult
Member since 8/12 6791 total posts
Name:
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Re: Please hug your babies UPDATE bottom of page 15
Sending continued prayers!
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| Posted 2/26/16 12:13 PM |
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oneday
<3
Member since 5/05 4319 total posts
Name:
Pam
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Re: Please hug your babies UPDATE bottom of page 15
I'm glad to hear they felt she was improved enough to move her out of PICU, but I can't imagine how scary it must be for you.
I hope she continues to improve and is back to herself soon!!
Sending positive thoughts and wishes for your baby girl!!!
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| Posted 2/26/16 12:18 PM |
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StaceyWill
It's a girl!!!
Member since 6/10 21539 total posts
Name:
Stacey
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Re: Please hug your babies UPDATE bottom of page 15
Praying so hard!! 
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| Posted 2/26/16 12:18 PM |
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Wishes1111
LIF Adolescent
Member since 12/10 853 total posts
Name:
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Please hug your babies UPDATE bottom of page 15
Continued prayers for your little girl!! You're so strong!
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| Posted 2/26/16 12:46 PM |
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J9-13
We're gonna be big sisters!
Member since 6/06 14887 total posts
Name:
J9
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Re: Please hug your babies UPDATE bottom of page 15
Sending strength and millions of prayers your way. Constantly thinking of you and your girl.
I hope you get the same response and level of care as you did in the PICU
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| Posted 2/26/16 1:19 PM |
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MyBabyG
LIF Adolescent
Member since 1/15 793 total posts
Name:
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Re: Please hug your babies UPDATE bottom of page 15
Continued prayers!
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| Posted 2/26/16 1:33 PM |
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jellybean78
:)
Member since 8/06 13103 total posts
Name:
Mommy
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Please hug your babies UPDATE bottom of page 15
Continued prayers
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| Posted 2/26/16 3:39 PM |
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PaddysGirl
Little princess is here!
Member since 4/07 5923 total posts
Name:
Crystal
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Re: Please hug your babies UPDATE bottom of page 15
I'm so,glad they moved you out of PICU. I hope the newest issue is nothing and it just,takes time for her to get back to herself.
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| Posted 2/26/16 3:54 PM |
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