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Old 05-19-2010, 09:56 AM   #41
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Re: thanatophoric dwarfism?

thank you all again for you kind words
check out the storys below, they will show you the condition that my Mark has, and the strength and faith that Anakin and Kolby gave everyone

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Old 05-19-2010, 10:17 AM   #42
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Re: thanatophoric dwarfism?

I dont know anything about this condition, but I DO know what its like to lose a little one.

Right now you are probably overstricken with greif. But let me help you with my experience... Even though you may lose your baby shortly after birth you most likely will want to spend many hours holding him and getting to know him and drinking him in so you never forget his sweet face, dont be afraid to do this. Embrace the time you will have together because those memories will be so important to you later.

Also, Iwill make a list of all the things you might want to do while you have him, even after he has passed. Because these are important things later down the road that you might wish you had done (because I have some regrets myself)...

Bring some bath soap, maybe you already have some you purchased that smells beautifully like baby. You can give him his newborn bath in your room. Afterwards- dont stop smelling him... That smell will forever remind you of your sweet baby and while at first it may bring tears to your eyes, later it will bring a smile to your face.

Dont forget the baby book, or anything you may want to get hand/feet prints on. Something for you to frame and save.

Find a tiny little outfit, or a sweet special blanket (2 if you have available)... One you can keep with him, the other you can keep for yourself.

Also, if he has hair, dont forget to take a lock to keep... Something I hadnt thought of, but wish i had done.

If you purchase those kits where you can take molds of the hands and feet, do so. Because I absolutely wish I had...

Contact NILMDTS. That stands for Now I Lay Me Down To Sleep. They are Non-profit professional photographers that will come to the hospital and photograph your moments with your baby, they can capture whatever you want. Just the baby, OR family portraits, the birth if you wish... This can at first sound morbid, but its not- it is amazing and you are going to cherish those photos because you will have a way to remember your babies sweet face forever. Also, they can do amazing editing, black and white, sepia ect... You will get a portrait package on CD of all your photographs, and its completely free. These photographers have been to other births and photographed other babies in some similar circumstances. And, you will be so entranced with your baby you hardly notice they are there. Here is a link to contact them and find a photographer to help you: http://www.nowilaymedowntosleep.org/

I hope I was able to help you with my information, and didnt come on too strong. But I wish I had known beforehand that I was going to have my son born sleeping- because I would have been more prepared and done things I wish I had.
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Old 05-19-2010, 10:18 AM   #43
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Re: thanatophoric dwarfism?

huge hugs to you
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Old 05-19-2010, 10:23 AM   #44
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Re: thanatophoric dwarfism?

thank you so much for your suggestions I will def. be doing all of those things you mentioned...I want to find a nice baby soap that is very unique smelling
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Old 05-19-2010, 10:31 AM   #45
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Re: thanatophoric dwarfism?

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Originally Posted by kannondicarpo View Post
My heart just aches for you and I cannot hold back the tears. I am also praying for a miracle. God is the Great Physician and the Great Comforter.
So true. I can't even imagine what you are going through mama. I have no words to comfort, as I'm not sure there is a "right" thing to say at this time, but I wanted to give you lots of
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Old 05-19-2010, 10:49 AM   #46
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Re: thanatophoric dwarfism?

Oh I am so very very sorry you're facing this tragedy. I too have known of babies slated to die at birth and tthey were born healthy.

Hoping for a miracle for you, but if not, then you find the strength to cope with this horrible loss.


many hugs to you and the other ladies who have lost their little ones like this. ((((((HUGS)))))
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Old 05-19-2010, 05:25 PM   #47
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Re: thanatophoric dwarfism?

I know that they have told you it is TD...but here is a blog of a family that was told their son had the same form of fatal dwarfism and the doctors were wrong...their son is still with them...I know this is incredibly rare, but I just wanted to try to send some hope your way....

http://cortmcgowan.blogspot.com/
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Old 05-19-2010, 05:40 PM   #48
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Re: thanatophoric dwarfism?

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Originally Posted by happymama1 View Post
I know that they have told you it is TD...but here is a blog of a family that was told their son had the same form of fatal dwarfism and the doctors were wrong...their son is still with them...I know this is incredibly rare, but I just wanted to try to send some hope your way....

http://cortmcgowan.blogspot.com/
oh mama, thank you for that link! I thought I had read all the stories out there...this brings tears to my eyes. There are 2 other misdiagnoses that I know of, and I am praying that our Mark is in the 2%
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Old 05-19-2010, 05:44 PM   #49
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Re: thanatophoric dwarfism?

My prayers are with you mama- family- and most of all the little one!

I do not have any experience/knowledge of this disorder; however, when I was 20wks with my 1st DS my ultrasound showed that he had abnormally measuring brain ventricals (on the large side which is a marker for known symptoms of some forms of Downs Syndrome) and I was sent to a perinatologist immediately following; the first visit with him confirmed that the first ultrasound was "wrong" and that my precious little one was perfect! During that week between my ultrasounds I have never been so diligent in prayer! I believe God does answer prayer and he is the Almight Healer! My son is 2 1/2 now and he is perfectly healthy. I am so thankful and blessed! I know that God has a perfect plan for everyone.

I pray that God gives you peace and strength in this very hard situation. Cherish every minute with your tiny baby!
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Old 05-19-2010, 05:50 PM   #50
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Re: thanatophoric dwarfism?

Praying your sweet baby is a 2% miracle. Hang in there and keep us updated. We'll all be praying for you and your family!
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