Phoebe - Mothering Forums

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#1 of 21 Old 03-19-2003, 07:40 PM - Thread Starter
 
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My 7 month old daughter, Phoebe was born with Trisomy 13, meaning she has an extra 13th chromosome. Most of these kids don't live more than a year and are profoundly retarded. Phoebe had a congenital heart abnormality as a manifestation of this syndrome and was dying of congestive heart failure when we brought her to the emergency room about 2 months ago. She just had her second heart operation 2 days ago. The first one didn't work, so they did open heart surgery to close up the hole in her heart the day before yesterday. She's doing well. She's a real fighter. We had been living at the hospital for more than a month and are expecting to stay quite a while longer. Your good energies would be greatly appreciated.
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#2 of 21 Old 03-19-2003, 07:44 PM
 
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i've been wondering how you guys were doing.
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#3 of 21 Old 03-19-2003, 09:38 PM
 
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Thank you for the update. I've thought of you and Phoebe often over the past few months and wondered how you were.

I'm keeping your family in my prayers.
Much strength and peace to you..

peggy
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#4 of 21 Old 03-19-2003, 10:49 PM
 
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Thank you for the update. Phoebe sure is a fighter, isn't she? I'll pray for you all.
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#5 of 21 Old 03-19-2003, 11:58 PM
 
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phoebe was born; she sounds amazing. please please keep us updated on her.




((((((((((P H O E B [COLOR=sky blue]E))))))))))[/COLOR]
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#6 of 21 Old 03-20-2003, 12:40 AM
 
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Oh my goodness! What a little trooper! Best wishes for a speedy recovery for your little baby Phoebe!

And take care of yourself too, mama.


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#7 of 21 Old 03-20-2003, 09:32 AM
 
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I think about you and your family all the time. Thanks so much for the update. Sending positive, healing thoughts your way!

Jerri
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#8 of 21 Old 03-20-2003, 09:41 AM
 
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Thanks, pony, for the news. Still praying for your little fighter. Hugs to sweet phoebe and her family.
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#9 of 21 Old 03-20-2003, 04:50 PM
 
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wow...a month in the hospital! i hope they are treating you well. prayers to you and your precious family. i remember when our daughter had her heart surgery, it's like you are in a dream or some other world. bless you and here's to speedy recovery for sweet phoebe!

~ star baby
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#10 of 21 Old 03-20-2003, 08:28 PM
 
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she is in our prayers! what a trooper!

I'm Andrea - I have three boys - 12 year old twins & an 11 year old

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#11 of 21 Old 03-22-2003, 04:17 AM
 
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white light..
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#12 of 21 Old 03-22-2003, 06:26 AM
 
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thanks for updating us pony, I've been wondering how you were too

big hugs to dear phoebe and all your family
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#13 of 21 Old 03-23-2003, 01:27 AM
 
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Phoebe gets her strength from your love.............

Thanks for the update.


(((((Phoebe & Family)))))


El
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#14 of 21 Old 03-23-2003, 01:37 PM - Thread Starter
 
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Phoebe is having a hard time. She hadn't slept for about 48 hrs. and was clearly suffering. They had to put the breathing tube back into her trachea last night. The reason I had her undergo 2 heart surgeries was so that she could breathe on her own. But it seems she's having too difficult a time doing that. She has been on breathing aids for as long as we've been in the hospital (ventilator, CPAP, BiPAP, cannula). Right now she's back on the ventilator. If you are so inclined, I ask that you please send healing thoughts her way. Thank you.
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#15 of 21 Old 03-23-2003, 01:53 PM
 
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love and light to beautiful phoebe

i have been thinking about phoebe SO much. my best friend's stepmom had a baby boy born w/ trisomy 13. they live on the west coast so my friend never got to meet him.

i hope that little phoebe is doing better by now, may she get some sleep. she has been blessed in her time on earth to have such a caring mama!

love & light to you as well. (((((pony)))))
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#16 of 21 Old 03-24-2003, 03:17 PM - Thread Starter
 
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Phoebe is doing better on the ventilator. She finally got some sleep. They're talking to me about a possible tracheostomy. What ever happened to your stepmom's trisomy 13 son?
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#17 of 21 Old 03-24-2003, 09:49 PM
 
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love and blessings to you nad Phoebe..

You'll be in my thoughts..

peggy
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#18 of 21 Old 03-24-2003, 11:47 PM
 
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Bright blessings to you Phoebe and family.

Jesse
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#19 of 21 Old 03-27-2003, 01:52 AM
 
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it was my friend's stepmom, i think he lived less than a month.

phoebe sounds AMAZING. i would love to meet her. why did you choose the name phoebe? it is so beautiful.

love & light & hugs & kisses to your whole family.

love, jenny
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#20 of 21 Old 04-14-2003, 10:57 PM
 
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Oh wow!! i thinbk about pheobe all the time. As a mater of fact I wanted to name our last baby pheobe in honor of her (I lost).

I am glad to hear she is such a fighter and that you guys have gotton to have so much precious time with her. I hope she is feeling better soon.

The truest answer to violence is love. The truest answer to death is life. The only prevention for violence is for the heart to have no violence within it.  We cannot prevent evil through any system devised by mankind. But we can grapple with evil and defeat it, but only with love—real love.

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#21 of 21 Old 04-21-2003, 05:43 PM
 
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Pony,

Thank you so much for the update! I've been thinking about you and Phoebe ever since I read your posts over on the BF overcoming difficulties board. All the best to Phoebe, you, and your family. Lots of positive energy flowing your way! May you all be surrounded by love and support as you walk through this. Phoebe has an amazing spirit~ Glad to hear that she's such a fighter.

Best wishes,

Sharon

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