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RIP Riley (2 Viewers)

James Daulton said:
Great video.

Man it's awful dusty in my office..

#TeamRiley
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was watching the video in my office.. girl I work with walks past and says "wow, that is a beautiful baby"

 
I bet you are so tired of hospitals now, and can't wait to get your little girl home.  It will be awesome when your whole family can get home and be a normal dysfunctional family like the rest of us schmucks.  Hang in there!

 
lakerstan said:
I bet you are so tired of hospitals now, and can't wait to get your little girl home.  It will be awesome when your whole family can get home and be a normal dysfunctional family like the rest of us schmucks.  Hang in there!
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19 straight days at the hospital. You know what I'm sick of? Wearing this damn hospital band and I have to explain to every Tom, ****, and Harry why I'm wearing it.

 
shadyridr said:
19 straight days at the hospital. You know what I'm sick of? Wearing this damn hospital band and I have to explain to every Tom, ****, and Harry why I'm wearing it.
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Tell them use to get into an exclusive Staten Island nightclub. They'll be envious. 

 
shadyridr said:
19 straight days at the hospital. You know what I'm sick of? Wearing this damn hospital band and I have to explain to every Tom, ****, and Harry why I'm wearing it.
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Don't be.  It's physical, tangible proof that your daughter is a badass.  

"What's that hospital band for"

"Because my baby daughter is stone cold killer, yo."

 
Keep that bracelet.  Tell her when she's 16, or 21, or 30, or every day of her life that she can take on anyone or anything - that she was born to take on anyone or anything, and you have the bracelet to prove it.

 
Riley is one beautiful little girl Shady!  So happy to see her doing better.  The video is AWESOME!  Best thoughts and prayers for you and Riley and your family!

 
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Still not eating. Therapist will evaluate her next week. If they determine therapy wont work in hospital they will have to put gtube in her to send her home and of course therapy will continue at home.

But we did get great news. The hemorrhaging in her eyes is all gone and her blood vessels behind her eyes look great. Follow up in three weeks. Retina detachment is always a risk with ip.

Otherwise she's good.

 
shadyridr said:
Still not eating. Therapist will evaluate her next week. If they determine therapy wont work in hospital they will have to put gtube in her to send her home and of course therapy will continue at home.

But we did get great news. The hemorrhaging in her eyes is all gone and her blood vessels behind her eyes look great. Follow up in three weeks. Retina detachment is always a risk with ip.

Otherwise she's good.
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Way to go kiddo. Keep fighting. :)

 
CurlyNight said:
Oh I hope she starts eating.  Come on Riley girl! Glad to hear eye issues have resolved!

#TeamRiley
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No eye issues for now. Always gotta keep checking them but very happy about that. Not sure the eating thing will resolve shortly or ever. Clearly damage from the stroke. We will see what therapists say.

 
shadyridr said:
No eye issues for now. Always gotta keep checking them but very happy about that. Not sure the eating thing will resolve shortly or ever. Clearly damage from the stroke. We will see what therapists say.
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Before you write that off, could you ask the doctors to check if Riley is tongue-tied?  I know it sounds dumb, but that's a possibility that often is overlooked and it only takes a minute to check.

Lip or tongue “tie”– If an infant immediately has trouble with sucking, in the absence of any obvious medical or developmental problems, the infant may be presenting with restricted “frenum” of the lips or tongue. For infants who are breast fed, the mother may experience unusual nipple soreness. The frenum is the little piece of tissue that connects the top and bottom lip to the gum and the tongue to the floor of the mouth. If these are too tight, then the infant can’t get a good latch on the nipple or can’t adequately move the tongue. This restriction may not be obvious, but a speech-language pathologist who works with infants can help decide if that is the problem. It is then easily corrected with minor surgery.
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Mrs. Rannous said:
Before you write that off, could you ask the doctors to check if Riley is tongue-tied?  I know it sounds dumb, but that's a possibility that often is overlooked and it only takes a minute to check.
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:goodposting:   My youngest was not eating good so we took her to a specialist when he was a few weeks old, turns out she had this issue. 10 minute procedure corrected it and she was fine right after. 

 
Really nothing new. Shes doing good still. Now they moved her to a crib which is good. Still not eating much. Doctor said they want to give her more time to try and eat before making any decisions about a tube. Speech therapist didnt evaluate her yet but ill make damn sure they think theyve done everything before putting the tube in.

 
Wonderful, my son has a cold/cough since Saturday. I've been diligent about not kissing him, washing my hands, etc and now my wife has the cold. She's obviously upset she can't visit Riley in the NICU. She started feeling sick yesterday afternoon so we left the NICU but she was holding the baby earlier in the day. I hope she didn't get her sick. And I hope I also don't get sick. I'm going to NICU by myself now.

 
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shadyridr said:
Wonderful, my son has a cold/cough since Saturday. I've been diligent about not kissing him, washing my hands, etc and now my wife has the cold. She's obviously upset she can't visit Riley in the NICU. She started feeling sick yesterday afternoon so we left the NICU but she was holding the baby earlier in the day. I hope she didn't get her sick. And I hope I also don't get sick. I'm going to NICU by myself now.
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Stay strong, GB. Just a bump in the road.

 
Thank You for the updates Shady. Your family is going thru so much, I can't imagine and I've seen a lot. 

More Ts&Ps to you and your family. 

 
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Keep you head up Shady.  Keep plowing through.

I had a good dream about Riley last night, no idea why.  Stay strong !!!!!

 
Ugh. It's ironic the place you are supposed to get better is the worse place for germs. I always come out of the hospital with something I didn't go in with. :/ Now I just have purell in my pocket and diligently use it. Sending healing ts n ps to all of you. X

 
CurlyNight said:
Ugh. It's ironic the place you are supposed to get better is the worse place for germs. I always come out of the hospital with something I didn't go in with. :/ Now I just have purell in my pocket and diligently use it. Sending healing ts n ps to all of you. X
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I think maybe Shady's son is still in germ farm school.

 
So I only spent a few hours there today because I was alone and as much as I love my Riley it's boring talking to a sleepy three week old. However, I fed her and she did eat 25ml by mouth. The ability is there imo. She just tires out easily. The nurse seemed confident she'd get it eventually but all nurses say different things. 

 
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Keep talking, though.  (Or read some books to her?)  Trust in the power of that ...let her 'hear' your love for her.  I suspect those lonely hours between the two of you will be powerful memories to hold close.  And - Circle of Life - maybe she will return the favor many, many years from now.

 
Do they let yo hold her skin-to-skin?  Studies show that helps preemies and other ill newborns.  Maybe it could help you and yours.

 
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