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RIP Riley (2 Viewers)

shadyridr said:
The nurse who had her today is really confident in herself. She said I've been waiting to get this baby for awhile because the one time she fed her she took almost an entire bottle. Well the confidence was well founded. Riley took four entire bottles in a row with her. 75ml in each. Now don't get me wrong. This wasn't luck. Riley still has week suction but she has no problem with the swallow or breathe part so this nurse used a different technique than others. She basically moves her cheek and massages her throat at the same time. Best way I can describe it is if you have ever seen videos of vets feeding baby calves with a bottle.
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I'd ram this info down every nurse until they were sick of hearing about it.  Awesome news.

 
shadyridr said:
http://imageshack.com/a/img921/6581/yVHT7a.jpg
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shadyridr said:
Here's my MIL and Riley the day she was born

http://imageshack.com/a/img921/2166/YCOkvY.png
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Two beautiful pictures. 

I don't have kids yet so I don't know what I'm talking about but Riley's difference between that first picture (the one with your MIL) and the second is remarkable. In the first she looks like a little peaceful sleeping jelly bean. In the second picture she looks like a fighter, who has already seen and done things that nobody else in the NICU or nursery has even imagined. Those eyes have depth and soul. And that full head of dark hair. She is making progress, moving in the right direction.

The stories you will tell her one day, and the stories you will tell us about her one day years down the road. I hope I don't get banned before then.

Thank you for sharing as much as you do in this thread. Selfishly, every time I see an update it makes me smile, snaps me out of any negative thoughts I may be having, focuses me on what is right and what is possible. 

#TeamRiley

 
Wrigley said:
Steady is good, most newborns lose a few ounces the first few weeks 

continued thoughts and prayers 
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The first few days they lose but by a month old they should be gaining around an ounce a day or about 1-2lbs by one month. She started at 7lbs, dropped to 6lb, 8oz and is now 7lb, 4oz

 
shadyridr said:
The nurse who had her today is really confident in herself. She said I've been waiting to get this baby for awhile because the one time she fed her she took almost an entire bottle. Well the confidence was well founded. Riley took four entire bottles in a row with her. 75ml in each. Now don't get me wrong. This wasn't luck. Riley still has week suction but she has no problem with the swallow or breathe part so this nurse used a different technique than others. She basically moves her cheek and massages her throat at the same time. Best way I can describe it is if you have ever seen videos of vets feeding baby calves with a bottle.
Click to expand...


That is freaking fantastic! I'd be parading that nurse all over that NICU to show the others how it's done.

 
shadyridr said:
The first few days they lose but by a month old they should be gaining around an ounce a day or about 1-2lbs by one month. She started at 7lbs, dropped to 6lb, 8oz and is now 7lb, 4oz
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Ain't how you start.  It's how you finish.  She'll get there.

 
shadyridr said:
The nurse who had her today is really confident in herself. She said I've been waiting to get this baby for awhile because the one time she fed her she took almost an entire bottle. Well the confidence was well founded. Riley took four entire bottles in a row with her. 75ml in each. Now don't get me wrong. This wasn't luck. Riley still has week suction but she has no problem with the swallow or breathe part so this nurse used a different technique than others. She basically moves her cheek and massages her throat at the same time. Best way I can describe it is if you have ever seen videos of vets feeding baby calves with a bottle.
Click to expand...
I'd so give that nurse (and Riley and you) a big giant bear hug if it was within my power.  Much ❤.

 
Night nurse didnt have as much luck but my wife did feed her 45ml this morning. Doctor joked we need yesterday's nurse to come live with us.

 
shadyridr said:
Life is just unfair sometimes.

I'm going back to work tomorrow. Saving a week for when Riley comes home.

Riley still very inconsistent with her feedings. Had feedings of 55ml, 30ml, and 10ml. She's very tired today. 

And to top it all off my MIL is practically in her death bed today.

Dont know how our family gets through both these at the same time.
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Almost four years ago, my wife had a similar struggle. Three days before I was to have open heart surgery, we found out her brother died. She would've leaned on me to get through this time, but I couldn't do or go anywhere because my surgery was locked in and I would've had to go through some procedures again. God blessed us by having our friends step up and support us. One friend came up from WV to take me home from the hospital and baby sit me while a neighbor from down the street offered to drive my wife and kids to Columbus and watch the boys while my wife did the funeral obligations. 

The thing is, let your friends and family fill the gaps. You've got this; trust me, you do.

 
Great to read there's progress! Some nurses have both the knack and the right personality fit. It can't hurt to ask if that nurse can be scheduled  to be with Riley more.

 
Dignan_ said:
Two beautiful pictures. 

I don't have kids yet so I don't know what I'm talking about but Riley's difference between that first picture (the one with your MIL) and the second is remarkable. In the first she looks like a little peaceful sleeping jelly bean. In the second picture she looks like a fighter, who has already seen and done things that nobody else in the NICU or nursery has even imagined. Those eyes have depth and soul. And that full head of dark hair. She is making progress, moving in the right direction.

The stories you will tell her one day, and the stories you will tell us about her one day years down the road. I hope I don't get banned before then.

Thank you for sharing as much as you do in this thread. Selfishly, every time I see an update it makes me smile, snaps me out of any negative thoughts I may be having, focuses me on what is right and what is possible. 

#TeamRiley
Click to expand...
Ive got three grown kids and I'm usually meh when it comes to newborn pics (the ol' been there, done that), but I can't click the links fast enough when you post new ones. Keep'em coming!

ETA: The stinkin' forum software stripped out the links to Riley pics posted by Shady in Dignan's post above. Thanks, Joe.

 
Last edited by a moderator:
Went there last night and she took 50ml so she is getting there.

I do want to mention something else. She's had a giant brown blotch on the back of her neck since she was in nicu. It was flat so doctors weren't concerned. Then is started scabbing up and then started getting full of pus. Finally the surgeon checked it out yesterday and determined it was dead tissue and she had to cut it all out. So now Riley has a giant hole in the back of her neck. It looks horrible but nurses are all saying it will heal. No clue how she got it. My wife is going to ask more questions tomorrow. I have been googling and it seems one cause is lack of oxygen to the blood vessels in that area so is it possible the stroke caused it? Just crazy

 
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shadyridr said:
The first few days they lose but by a month old they should be gaining around an ounce a day or about 1-2lbs by one month. She started at 7lbs, dropped to 6lb, 8oz and is now 7lb, 4oz
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Not too shaby all things considered!

 
Tube has been removed from her nose. That nurse was the turning point. Not sure when yet but hopefully soon. Not sure what condition the wound on her neck has to be in before they can send her home and they mentioned another mri.

 
shadyridr said:
Tube has been removed from her nose. That nurse was the turning point. Not sure when yet but hopefully soon. Not sure what condition the wound on her neck has to be in before they can send her home and they mentioned another mri.
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Fantastic news Shady.  I'd bet the neck wound will heal pretty rapidly and the MRI is most likely to rule out anything else, and to make sure there's no sign of the original problem.  Everything looks to be pointed in the right direction.  Sending prayers your family's way that this scary episode is but a distant memory in a short time and you and your family can get back to the business of loving each other and enriching those that you meet.

 
shadyridr said:
Tube has been removed from her nose. That nurse was the turning point. Not sure when yet but hopefully soon. Not sure what condition the wound on her neck has to be in before they can send her home and they mentioned another mri.
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That is such good news.  Her big brother will be so excited when she comes home :)

 
James Daulton said:
Fantastic news Shady.  I'd bet the neck wound will heal pretty rapidly and the MRI is most likely to rule out anything else, and to make sure there's no sign of the original problem.  Everything looks to be pointed in the right direction.  Sending prayers your family's way that this scary episode is but a distant memory in a short time and you and your family can get back to the business of loving each other and enriching those that you meet.
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Well I'm sure the mri will still show the damage but hopefully there is some healing seen

 
We're all thrilled to see progress, even if it's coming slowly. Riley is tough, you've found an incredible nurse, and the doctors seem optimistic. Her neck will heal and she'll be home with your family where she belongs soon. Keep hanging in there. 

 
Out of all the ####### things, that ####### ### #### wound is causing complications now. Im a nervous wreck right now. Doctor just called me saying she had some sporadic fevers over the weekend. They keep doing blood work to rule out infection but her cultures came back positive so they are starting her on antibiotic right now. Also, they want to do a bone scan to see if the wound impacted the bone. They are injecting her with a dye and they are also giving her the MRI today. I cant even think straight. Just keep praying please. My heart cant take any setbacks.

 
oh come on! 

you guys have this, shady- thopraws flowing your way. can't wait to read the news that you guys are all home, happy and healthy.

 
shadyridr said:
Out of all the ####### things, that ####### ### #### wound is causing complications now. Im a nervous wreck right now. Doctor just called me saying she had some sporadic fevers over the weekend. They keep doing blood work to rule out infection but her cultures came back positive so they are starting her on antibiotic right now. Also, they want to do a bone scan to see if the wound impacted the bone. They are injecting her with a dye and they are also giving her the MRI today. I cant even think straight. Just keep praying please. My heart cant take any setbacks.
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Hang in there shady. We're all pulling for your little girl.

 
shadyridr said:
Out of all the ####### things, that ####### ### #### wound is causing complications now. Im a nervous wreck right now. Doctor just called me saying she had some sporadic fevers over the weekend. They keep doing blood work to rule out infection but her cultures came back positive so they are starting her on antibiotic right now. Also, they want to do a bone scan to see if the wound impacted the bone. They are injecting her with a dye and they are also giving her the MRI today. I cant even think straight. Just keep praying please. My heart cant take any setbacks.
Click to expand...
Done. Keep the faith man. Keep the faith!  :boxing:

 
I hope to read better news soon - your family deserves it.  Try to remain strong for your family as difficult as it may be right now. 

 
shadyridr said:
Out of all the ####### things, that ####### ### #### wound is causing complications now. Im a nervous wreck right now. Doctor just called me saying she had some sporadic fevers over the weekend. They keep doing blood work to rule out infection but her cultures came back positive so they are starting her on antibiotic right now. Also, they want to do a bone scan to see if the wound impacted the bone. They are injecting her with a dye and they are also giving her the MRI today. I cant even think straight. Just keep praying please. My heart cant take any setbacks.
Click to expand...
Hang in there buddy. My son came down with MRSA after his second open heart surgery. Put him on the antibiotic for 75 days.  That was 18 years ago.... 

 
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