# my baby was born



## pony (Dec 23, 2001)

I posted here while I was still pregnant, when I found out that my baby has a rare, fatal chromosomal defect called Trisomy 13. I gave birth to my baby, my little 5-lb, 6 oz Pheobe 9 days ago. She has 6 fingers on each hand, 6 toes on one foot, and she looks like a little fallen baby bird. She has a hole in her heart, which is what every doctor tells us is going to kill her. We were told babies like these usually don't survive more than a few days. But I think she's surprising everyone, including us. She turns blue sometimes and we have to put her on oxygen. Today I thought the end was at hand when she turned purple, but she got better. On top of everything, she has a cold, which my mother gave all of us when she came to the hospital after I gave birth. My husband is taking all his sick days and vacation days from work so he can help care for her and our 2 yr old son, which is really quite unmanagable, so we often have to send him to his grandparents' house. We came home to wait for her to die but she's so strong. I'm pumping breastmilk for her, she is always held, and there are so many people praying for her. But what a strain to live everyday wondering if this will be her last.


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## Irishmommy (Nov 19, 2001)

Pheobe sounds like a real fighter. It must be so hard for you and your dh and ds.

Tell me to mind my own business if you like, but it sounds to me that your ds is just reacting to all the stress. Do you think it might be better for him if the grandparents came to your house to look after him. That way he still has you and dh around and is still in his own home, and he is less likely to feel abandoned or pushed aside (and I in no way mean you are doing that).

My thoughts and prayers are with you and your family.


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## moonglowmama (Jan 23, 2002)

Oh, how many emotions you must be feeling. I feel so many just reading your post. Joy for you for Pheobe's birth and each moment she has given you. Pain at the thought of losing her. Sorrow for you and your husband and your son.

Just wanted to let you know it's safe to have all those feelings here.

Love to you,
Sarah


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## Momof4 (Jan 25, 2002)

God bless you pony, and little Pheobe, and your whole family. My thoughts and prayers are with you.


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## Dodo (Apr 10, 2002)

My thoughts are with you.


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## indiegirl (Apr 15, 2002)

What a sweet girl. You are a good mama and my thoughts are with you and your family. please keep us updated.


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## emmaline (Dec 16, 2001)

dear pony

love to you and your family especially your dear baby phoebe


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## lilyka (Nov 20, 2001)

Congratulatios on the birth of your dd. I wish these next few weeks to be a time of peace and joy for you and your family. It must be hard knowing you are going to have to let go so soon. You and your family will be in my thoughts and prayers.


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## pony (Dec 23, 2001)

I do miss my son. Since the baby was born it seems I have little to do with him. I'm sure he feels like he's being shoved to the side. But honestly, trying to manage him and the baby is much much too difficult. I don't know what I'm going to do when my husband has to go back to work. I may need to get someone here to help out with him or find some kind of daycare for him. We can't really afford it, so we'll probably have to look into some kind of program like medicaid to help us out with this situation. The grandparents can't take him everyday and I can't handle both him and a sick baby. Thank you all for your well wishes. I will keep you posted. It'll be therapeutic for me to share about this very difficult time in our lives.


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## MamaDimitriou (Nov 27, 2001)

I'm so glad you are posting this here!! You know you have my support, but it is important to have additional support and an outlet to get your feelings down 'on paper'... you are a brave and wonderful woman!
I will be bringing you some lentil stew when I come to get Phil on Monday.
Much love,
Colleen


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## serenetabbie (Jan 13, 2002)

Pony ~ I have no words for you that have not already been said.







You and your family will be in my prayers.


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## tara (Jan 29, 2002)

peace and love and strength to you and your family, pony. thank you for sharing with us, and know we'll be thinking of you...


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## bpolley (Mar 1, 2002)

Pony, you and your family are in my heart -- prayers and good thoughts to you all during this trying time. I wish you peace, strength and love.

Brooke and Asa (1/19/02)


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## Abigail (Aug 23, 2002)

Pony,
You are so strong and brave. My prayers are with you and all of your family.

Abigail


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## Deirdre (Dec 1, 2001)

Pony- my thoughts and prayers are with you.









I am in NJ also and I have met Colleen before. I know you haven't met me but please, please please let me know if I can do anything for you.

-Deirdre


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## carminex (May 24, 2002)

Stay strong. My thoughts and prayers are with you.
Much love,
Heidi


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## LiamnEmma (Nov 20, 2001)

Oh my goodness, I'm in tears for you and your DH and your DS and your Phoebe, although she sounds very much beloved, and in the end that's what matters in my opinion. My thoughts will be with you and your family.

My dd was ill in a way that comes nowhere near this when she was newborn and it was difficult for us because I also felt like I needed to focus on her, and our ds was about 22 months old and shuffled around as well. Your ds will recover with your love before and after this, and I think will ultimately be stronger knowing how much you love your family and having witnessed first hand how lovingly you respond to this. In the meantime, I'll send him thoughts of strength and love too.

Leah


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## charmarty (Jan 27, 2002)

Congratulations on your baby girl.I love her name btw!
I just wanted to tell you a very near and dear friend of mine had a baby with trisomy 13.It is very rare.I can tell you the things they did to help comfort them and if you have any questions I would be glad to help,I just dont want to overload you right now.While they were still in hospital they did wonderful things like.letting her smell a rose,listen to all kinds of music,took a family picture,let her feel the sunshine on her face,listen to her mama and sister sing o her,read books.They also took a clay imprint of her hand to keep forever.She lived a wonderlife while she was here and got to experience many wonderful things that we all take for granted.
Much Love and thoughtfulness to your beautiful family.
Please pm me if you want to as well.


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## tessamami (Mar 11, 2002)

I lost my perfect little boy Everet just over 4 years ago and it still hurts a bunch. I remember reading about Trisonomy 13 in Spiritual Midwifery, I think?

Life and death such a mystery. You are in my thoughts and prayers.


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## pony (Dec 23, 2001)

Thank you again for all your thoughts and prayers. Colleen--you don't know how grateful I am for helping me out with Phil on Monday. Dierdre--You're so kind to offer your help to someone you never even met. Phoebe made it yet another day and is now 11 days old. My husband sounds like he's at his wits end this morning. He's been doing most of the cooking lately(and what a marvelous cook he is!) This morning our son spilled orange juice all over the floor, threw all the newly developed photos all over the floor, and the toaster broke. Charmarty--I would love to know how your friend dealt with a trisomy baby. She has periods of unconsolable crying which upsets me so much because I didn't want to bring her into the world to suffer.


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## Abigail (Aug 23, 2002)

I am still sending love and prayers to you.
-Abigail


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## Els' 3 Ones (Nov 19, 2001)

Welcome to the world, Pheobe !

pony and family you are in my thoughts and prayers. This time in your lives has a purpose and you may never know what..........

You've done the right thing for your family, please don't waste your precious time second guessing yourself.

If Pheobe learns nothing else, she will know love.


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## sunmountain (Nov 19, 2001)

pony, my thoughts and prayers are with you. I am lighting a candle to send your family strength and peace today. Congratulations on the birth of your wonderful little baby, what a blessing she is. Thank you for sharing this with us.


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## OceanMomma (Nov 28, 2001)

Pony. I was wondering how you were the other day. You are in my thoughts. Give Pheobe a big hug & kiss from me. Sending you strength & peace.


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## charmarty (Jan 27, 2002)

I am not sure if you are still in the hospital or not with Pheobe.My friend kept Cassie in the hospital for her own reasons.She (carol) was unaware of the trisomy 13 until she actually gave birth.Until then she had a very happy healthy preganacy.When Cassie was born the first thing the doc noticed was her cleft lip and palate,which I was told is a common sign of a chromosonal defect,so they took her for tests,and 1 day later a diagnosis was made.They took her off of life support the 3rd day.She lived for 3 more.Carol also had a 2 yo to take care of so she tried her best to balance the two,going back and forth to the hospital.They held her alll the time,did kangaroo care,and lots of walking.
It may help Phoebe`s crying if you did kangaroo care with her too if you havent already,even snuggling close to her mommies breast can sooth her.I would suspect though some of the crying is related to the stress and such that this litle one feels around her.plus you said she is sick,so thats just crappy enough to have.She is probably mostly releasing tension,hold her tight,and tell her or sing to her how much you love her.
If you have any more specific questions please dont hesitate to ask.And if there is ANYTHING I can do for you or your family,let me know!








You and your family are always in my thoughts


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## JavaJerri (Mar 20, 2002)

I've been thinking about you and your family since you first told us about your situation. You are in my thoughts.I think you are one of the strongest most loving people I have ever "met" Congratulations on the birth of little Pheobe.


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## Ivanhoe (Apr 11, 2002)

You and Pheobe are on my prayers. You are such a great mama!!!


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## XM (Apr 16, 2002)

You have been in my thoughts lately as well. I wish you and your family strength and peace at this time.


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## ChildoftheMoon (Apr 9, 2002)

You are a strong loving mama!


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## pony (Dec 23, 2001)

Charmarty--thank you for sharing the story of your friend Carol's experience with a trisomy baby. What a hard, tragic shock it must have been for her. At least I was prepared to expect a trisomy baby because I had amniocentesis. What is kangaroo care? We do hold her most of the time. I keep her in a sling and walk around with her alot. A thousand Thanks to all of you for your wonderful support!


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## Heather2 (Apr 18, 2002)

Congratulations on the birth of your little one.

I read this post the other day and your little Pheobe has been on my mind ever since. It's amazing that you can not even know someone but think about them so often. I wish I could just come over and shower your little one with hugs and kisses.

I am so sorry that your family is going through this rough time. I think it is wonderful that you have given Pheobe life and are showing her how wonderful it can be.

She will continue to be in my thoughts and prayers.


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## Ms. Mom (Nov 18, 2001)

Pony - I've been thinking of you so often and wondering how you and your family were doing.

You're going through such an emotional time right now. Please remember that you just gave birth. As hard as it is, you need to make sure you're caring for yourself.

Phoebe's strenght and determiniation will bring you so much in the years to come. I know your concerned about her uncontrollable crying. Please know that even if she's suffering, she's feeling the loving arms of her mother and that will bring her deep comfort.

You're one of the strongest, most amazing women I've come in contact with and I feel honored that you've shared your precious Phoebe with us.

I'll light a candle each day in her honor and keep her deep in my thoughts.

If you need to talk - please feel free to contact me any time by pm or email [email protected]

I hold you gently in my thoughts.


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## Serenity (Nov 19, 2001)

our thoughts and prayers are with you and your precious little one


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## PM (Nov 19, 2001)

I've been thinking about you too. Healing warmth to your precious baby daughter who is so strong and courageous.


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