or Connect
Mothering › Mothering Forums › Mom › Parenting › Special Needs Parenting › Phoebe
New Posts  All Forums:Forum Nav:


post #1 of 21
Thread Starter 
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.
post #2 of 21
i've been wondering how you guys were doing.
post #3 of 21
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..

post #4 of 21
Thank you for the update. Phoebe sure is a fighter, isn't she? I'll pray for you all.
post #5 of 21

i remember when

phoebe was born; she sounds amazing. please please keep us updated on her.

((((((((((P H O E B [COLOR=sky blue]E))))))))))[/COLOR]
post #6 of 21
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.

post #7 of 21
I think about you and your family all the time. Thanks so much for the update. Sending positive, healing thoughts your way!

post #8 of 21
Thanks, pony, for the news. Still praying for your little fighter. Hugs to sweet phoebe and her family.
post #9 of 21
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
post #10 of 21
she is in our prayers! what a trooper!
post #11 of 21

positive thoughts and

white light..
post #12 of 21
thanks for updating us pony, I've been wondering how you were too

big hugs to dear phoebe and all your family
post #13 of 21
Phoebe gets her strength from your love.............

Thanks for the update.

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

post #14 of 21
Thread Starter 
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.
post #15 of 21

i am so sorry

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)))))
post #16 of 21
Thread Starter 
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?
post #17 of 21
love and blessings to you nad Phoebe..

You'll be in my thoughts..

post #18 of 21
Bright blessings to you Phoebe and family.

post #19 of 21


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
post #20 of 21
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.
New Posts  All Forums:Forum Nav:
  Return Home
  Back to Forum: Special Needs Parenting
Mothering › Mothering Forums › Mom › Parenting › Special Needs Parenting › Phoebe