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2 weeks and... (George Update)


Forum: April 2013 Playroom

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  #1  
April 20th, 2013, 05:35 PM
2XlinkedPHkids
Join Date: Jul 2012
Posts: 820
We are STILL in the NICU. /sigh

George was supposed to have an MRI last night, but it didn't work out. So probably on Monday. She also has a swallow-study scheduled for Monday too.

I haven't put this particular tidbit on facebook, nor have I told my SO, so if any of you are friends with me on Fb - please don't say anything there.

The doctor told me yesterday that while she was still 'an enigma', he is leaning heavily towards her having a brain defect or damage.

So there's that lovely piece to deal with. -.-

I did get her to eat 15 mls today. I swear she just does NOT like to be touched. I've got her to eat more than anyone else on two sep. occasions over the past few days.. and both have them have been in the same circumstances. I left her on her bed, did not touch her at all, and just waited until she opened her mouth and then popped the bottle in. She stayed awake and alert at least 3 times longer than she normally does.
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  #2  
April 20th, 2013, 05:54 PM
bellasky's Avatar Blessed
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I'm sorry you are having to go through so much. Hope you get answers soon.
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  #3  
April 20th, 2013, 05:57 PM
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Join Date: May 2008
Posts: 130
Oh no.
I hope the progress with eating continues. As the mom it seems like you know better than anyone what will work.
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  #4  
April 20th, 2013, 05:58 PM
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Double post, sorry. You are all in my t&p!!
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  #5  
April 20th, 2013, 06:11 PM
MsRK's Avatar Mega Super Mommy
Join Date: May 2012
Posts: 1,611
*hug* I'm so terribly sorry that your little sweetie is still having problems. I'm going to stay optimistic and hope like hell that the doctor is wrong about the brain damage. I'm glad that you've gotten her to eat though.. that's definitely encouraging if you have found a way to get her to eat.

I am thinking of you and baby.. and hoping for the best.
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  #6  
April 20th, 2013, 06:11 PM
ThaiSpice's Avatar Platinum Supermommy
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So sorry. You guys continue to be in my thoughts. Hoping for better than expected MRI results.
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  #7  
April 20th, 2013, 06:27 PM
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I hope her MRI goes well. You have all been in my thoughts, LOTS!
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  #8  
April 20th, 2013, 06:56 PM
*Anya*'s Avatar Platinum Supermommy
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hugs, thinking of you guys. Praying the MRI comes back normal.
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  #9  
April 20th, 2013, 07:22 PM
2XlinkedPHkids
Join Date: Jul 2012
Posts: 820
Thanks, ladies. The longer she's in there, the harder it gets to deal with.

She's either beat Lily's NICU days stay or is tied with her. I'd put so much hope into George being healthy. Then this.

I mean...how in the hell do you deal with this? At least with Lily we pretty quickly identified what was wrong.
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  #10  
April 20th, 2013, 07:31 PM
kimberley's Avatar Mega Super Mommy
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I'm so sorry to hear this. I hope the MRI comes back okay and that you find out what is up. It's the not knowing that can drive you bonkers.. You're all in my thoughts. HUGS!
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  #11  
April 20th, 2013, 07:36 PM
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Thinking of you
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  #12  
April 20th, 2013, 08:00 PM
anjawb's Avatar Super Mommy
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Location: Western Mass
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I can't imagine what you are feeling. I hope you get answers soon and are able to take care of that little one!!!
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  #13  
April 21st, 2013, 12:45 PM
HalfDozen's Avatar Formerly Number5OnTheWay
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How awful!!! I'm sorry that you are still going through this, and I hope that you get some answers soon!!
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  #14  
April 21st, 2013, 01:23 PM
Purple_cat's Avatar Mega Super Mommy
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I am so sorry that this is going on. I am thinking about you and keeping you in my prayers. I hope that you get good results from the MRI.
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  #15  
April 24th, 2013, 12:03 AM
MsRK's Avatar Mega Super Mommy
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Just wondering how your sweetie George did on her MRI and how you are holding up.

Update us when you have a moment to spare.. *leaves you a tender hug*
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  #16  
April 25th, 2013, 08:27 PM
2XlinkedPHkids
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Well, this Saturday will make 3 weeks... and we're still in the NICU.

We did get the results of the MRI back, and there was an abnormality found. They believe it to be a genetics issue so we're working with them. They're going to do an in depth scan (I forget the exact name) of her chromosomes. They're looking for a few specific things (but didn't tell me what). They did say, however, that if they don't find anything, they will want to do ...gah...I think they called it gene sequencing? analyzing. Something. They looked obscenely excited by the prospect.

We don't know if it actually has anything to do with George's issues, though. Since issues in that area of the brain (cerebellum) tend to run in my family.

We're working with different types of nipples, and she seems to do a tiny bit better on the Avent slow-flows. By tiny bit better I mean we can sometimes get her to eat 6-7 mls as compared to the 2-3 we normally see on the hospital provided slow-flows.

I'm still pumping like mad, but I go back to work on Monday so I'm not sure how its going to work out. I only get an average of about 80 mls per session, pumping every 2-3 hours during the day.

Her coming home is still not even something we've talked about.

...and my boyfriend is swaddling one of Monster's babydolls as we speak. Monster has been in bed for 2+ hours.
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  #17  
April 25th, 2013, 09:43 PM
*Anya*'s Avatar Platinum Supermommy
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hugs I don't even know what to say I hope that because she is so young that the brain as it develops will compensate for the abnormality. I'm so sorry that it wasn't better news
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  #18  
April 26th, 2013, 05:47 AM
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I was just thinking of you guys, wondering how things were going. I'm sorry you don't have better news. I really hope you get answers soon!! How's the monster holding up through all this??
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  #19  
April 26th, 2013, 06:26 AM
MsRK's Avatar Mega Super Mommy
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Thank you so much for updating us. I'm truly sorry that she is still in the NICU. I was hoping that you guys would have gotten more of an answer than that but I understand that this sort of thing can take some time. Please know that you are in the my thoughts and I am hoping for the best possible outcome for your little George. If you ever need to vent or just talk you know that you can always PM me. *HUG* Please try to stay strong and good luck!
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  #20  
April 26th, 2013, 09:47 AM
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Have been coming to this board for a long time, My children are older 11 year old twins and a 14yr old but I have been following your story and just wanted to let you know that my thoughts and prayers are with you and your family!!!
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