Baby Dacky IS HOME Update pg 9 post 133

[dsneprincess]

I think your baby is LUCKY God chose you as his parents. Your video is amazing: someday your son will know how loved & wanted he was from the first moment you met. I send continued prayers.
I am always amazed by how territorial & "junk yard dog" some doctor's offices act. Just admit you dropped ball, apologize & send the records NOW! Keep yourself cool, calm & collected. You are right & they are so wrong on this one! So sorry you are dealing with these attitudes from supposed professionals.

 

[mommy2mrb]

Vicky, hope you will be able to have your c-section at CHOP, better to be at the best place for Baby Dacky!

am keeping you and your little man in my prayers

 

[JJ&JHsmom]

Glad you were able to keep the appointment at CHOP, boo to the not nice woman at your DR's office. She should admit they made a mistake, correct it and move on!

Hopefully the famlies in the support group will give you a better picture of what to expect and help you better understand and prepare.

We are keeping you in our thoughts and prayers.

 

[jacksmomma]

Lots of prayers and pixie dust for Baby Dacky! The first video was amazing! I could not get the second video to load, but I am sure it was just lovely. As someone with disabilities, be strong, be honest with you child, and know that you can do this.

 

[dacky041208]

So we ended up getting our appointment with CHOP, and it ended up being an all day event this past Thursday. We met with genetic counselors, they did an echo on the baby and then we had a 2.5 hr ultrasound (baby was stubborn!) followed by a meeting with 2 doctors, a head nurse, and a genetic counselor.

My nightmare came true when they said that his condition is worse than first thought- not only does baby dacky have fractures in all the bones of his arms and legs, but they are now seeing fractures in his ribs too. This is extremely bad news as they aren't healing correctly and may limit his ability to breath on his own when he is born.

They believe he has type 2 O.I., not type 3 as first thought. Type 2 is lethal.

They are really pushing for the amnio but after speaking with a support group we found on facebook, both DH and I are still against the idea. They want to do the amnio because if it is confirmed type 2 then we'd have a natural delivery so I can "have the time with him while he's alive". If it's a severe type 3, then we'd continue with the planned c-section.

I feel like the amnio would confirm his death and I'm against the idea. Although type 2 is extremely severe, there are type 2ers who are alive.

The support group also has 20+ similar stories to this: they were told the worst news, recommended to terminate, trusted God and their gut and have beautiful children to show for it.

We refuse to give up.

We're talking to Dupont Children's hospital now to see about options there. Although I think we'll be able to deliver at CHOP, I'm afraid they won't fight for him like they need to.

Anyway, on a related note, if you have any yellow in your closet, wear it tomorrow, please? May 6 is known as Wishbone Day and is an international day of awareness of O.I.. Spread the word. If you do wear yellow, please take a picture and send it my way. I can pm you my email if you need it.

Our baby will live. We're determined for that. We plan to make a scrapbook of all our friends and family around the world who send us pictures. We want him to know that even before he came into this world, he was loved and supported by many.

Thanks ladies.

 

[BernardandMissBianca]

I will try to dig up something yellow tomorrow. DS16 will as well, I'll have him send me a pic. He can't wear it to school because it has a logo but he'll change into at some point in the day.

 

[BernardandMissBianca]

I will continue to pray for baby Dacky.
You are strong and you are the best advocates a child could have. Keep up the good fight!! We are in your corner!

 

[Reddy]

oh Dacky I was wanting some good news

I don't think I have anything yellow but one Disney shirt that is already packed besides I have to wear black to work


I feel like we need more hugs around here

 

[JohnsonsLoveDisney]

Sorry to hear.. You are in our thoughts. I do not own anything yellow

 

[rlovew]

So sorry to hear about the continued issues. I will see what I have in yellow to wear tomorrow.

I would also like to share a story about a little girl in our church's preschool. When her mother was pregnant they discovered she had a problem in the brain that would cause many problems and probably very early death. The doctors recommended an abortion. Instead the parents started everyone praying. She was born with problems but they were not nearly as extensive as they thought although she was in the hospital for the first 3 months of her life and had to have a number of shunts. She was expected to walk but she is walking with braces now. She is around 3 years old now and doing wonderfully. She does occasionally need to go into the hospital for things but it is not nearly as bad as the doctors said. Just thought I would share a story of hope because prayer can change things.

Rebecca

 

[DisneyBelle99]

Sending love and prayers to Baby and Parents!!!!! I have a yellow bathrobe, which I will happily wear tomorrow. Now that ought to be some picture! God Bless! Deb in NY

 

[3pletprincesses]

We really hope that you will have better news at the baby's birth. Don't give up!!! I do not have the same story as you and far from it but when we were pregnant with our triplets, we were told that one of them had severe heart defects and we should terminate. I'm stubburned, very stubburn and refuse. Our girls were born at 30 weeks via C-section which was very early. We were told that she would not survive birth and to expect to say our good byes shortly after. She was the only one born breathing on her own while they others had to be intubated. Several hours later, they told me that she would need heart surgery but it wasn't as bad as they expected. She had her surgery and unfortunately had to be intubated form there on. 3 days later, I left the hospital and left my girls there. That same night got a phone call saying that she would not make it and to come right away. Blood transfusions and several extra machines were "blogged" on her. She refused to give up and we refused to give up. It was a very long road with several phone calls saying hurry she has very little time left and almost 7 years later she still with us and she's the healthier of the 3. We were told in the first few weeks that she had severe brain damage, would have health problems all her life and probably would require several more surgeries. We were told that she would be at best a baby all her life and to not have too many hopes yet she has the higher grades in school and just last week got an award for high achievements. I know it's not the same story and I know it's not the same but I wanted to give you a little hope that drs do make mistakes. She was not suppose to be with us and against all odds, she's still here and still going strong. Your family is in my thoughts all the time and I truly hope you are as blessed as we are and get some good news.

 

[lovingthemouse]

You and your husband have incredible determination, an immense quality which will move you and your son forward in life!! I hope that somewhere in his scrapbook, you share with him, how loved he has been since you first found out you were pregnant.

 

[MazdaUK]

Continuing P&PD. I have some yellow ribbon in my stash I'm sure - and a very bright yellow skirt.

Praying it won't be as bad as the professionals fear - they have to prepare for the worst, but we all know prayers can change that. A close friend had a baby born with a rare condition of the nervous system - she was told he probably wouldn't reach his first year, would never be mobile or talk, and a one in [huge odds] of surviving beyond 3. That "baby" is 21 this year, and yes has lots of medical issues but is a friendly loving young man who enjoys life.

 

[dacky041208]

Thank you so much for the continued prayers and thoughts! Your stories have given me tears in my eyes; I know our baby will fight like the others.

Happy Wishbone Day, everyone!

 

[Reddy]

I got the Boy Scout thing going thur my head

Be Prepared

be prepared for the worst - if you are ready for the worst possible outcome then it shouldn't be so bad

My boys were "normal" so I wasn't prepare for what I'm doing now - I'm glad they gave you a heads up so you can be prepare - you are going to be a great Mom

 

[bearbear]

Sending you prayers and thoughts today. I will wear my yellow dress today in honor for your little guy. He doesn't even know how lucky he is to have parents like you. He is truely blessed.
thinking of you
Cindy

 

[tyniknate]

Send me your email please. I didn't see this until this morning, but I will change as soon as I get home this afternoon and will make my guys change too. We will wear yellow to our meetings tonight in honor of your family.

My continued prayers to you and your family. I have to agree with Reddy, "Be Prepared" is a very good motto to live by. We are a scouting family and those two words have been a theme in our lives for almost 15 year now. You and your DH are certainly an inspiration and I know your DS can feel how much he is loved already!

 

[wdwmickey]

Prayers and many blessings being sent your way My family will continue to pray for your family. What awesome parents you and your DH already are!!!

 

[JJ&JHsmom]

Sending hugs and prayers your way. I will be wearing yellow and thinking of you all today.