Parenting after a Loss

Update

After 11 days, I finally don't feel like I might explode... I guess I blocked that part out of my reading about postpartum constipation mixed with pain meds from the hospital. I've never been big on drinking much water, but I guess I have to learn how to. FYI: Drinking Epsom Salts is terrible and I think my cleanse for a colonoscopy was more pleasant.  but I am glad it's over.

Vince has thrush sadly, so I am doing everything I can for him, and to prevent it from spreading to me.

He apparently from the echocardiogram he had last week has a hole between the two walls of the upper chambers of the heart, though they said that 3/4 people will grow out of it by puberty. Most people don't know they have one unless they get an echo. So of the heart defects he could have, this was the best case.  

On May 15th we go back to the Cincinnati Children's Hospital to get an ABR and hearing test, he failed all three when he was first born in the hospital. He does seem to respond some to us talking, but we aren't sure if he is responding to our faces, or the noise. Loud noises do not bother him (Loud clapping, sudden noises, etc) We also meet with a geneticist to talk about Downs, and in November (the earliest the waiting list will allow) we start going to a Down's Clinic to meet with the team there that will help him. I am grateful to have such amazing resources at my disposal. 

From what we know, seeing he has few markers and almost no facial markers, they are suspecting he has Mosaic Down's, which would help him live a much more normal life. No matter what he is perfect, but for his sake, I hope him an easier life.  Seeing I am 25 and we are starting very early with the testing, he will have a much better chance to get ahead. 

imageVincent Julian born on March 27th, 2013 DX with Down Syndrome image
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Re: Update

  • (((HUGS))) I hope you are able to get all of the help in the world for him.

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  • I'm glad you are feeling better.  I hope the thrush goes away quickly.   Luckily we haven't had thrush, but LO had a yeast diaper rash that took two weeks to clear, so FX it doesn't spread.

    It sounds like you have a great plan an

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  • You are doing so good, mama!

    Hugs!
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  • I'm sorry to hear he has thrush. I hope it goes away quickly and that you don't get it.

    I wanted to add that at that age, DD didn't react to loud noises either. We thought she might have hearing issues as well but the pedi said it was normal
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  • I am glad you got things worked out! Also, great news about about his heart. I am glad you are getting all the testing done you can and are finding the resources you need for Vince. 
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  • Wow you are seriously a rock star. I was a crazy mess at 10 pp and you are handling everything so well.

    Vince is lucky to have you and all the amazing resources possible. :::hugs mama::: you seriously are doing awesome.

    I also
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    ((hugs)) I love your outlook on this.  He is absolutely perfect!  Sounds like you have a great plan in place. 

    Also, FWIW, I was born with a hole in my heart as well.  Now it's just a murmur, and unless you know what

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  • You are so strong and positive! Love reading this update from you. And you couldn't do better than Cincinnati Children's... they are absolutely wonderful (and I'm not saying that just because my DH works on one of their research teams!)
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  • Huge hugs to you! I agree with PPs.. Vince is so lucky to have you as his Momma! You are doing fantastic and it sounds like you have an excellent plan filled with tons of amazing resources to help him lead a truly fulfilling life!! 

    And, lik

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  • He is lucky to have such a great mama! (((HUGS)))
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  • Thanks for all the kind words :) I know I sure don't feel like Supermom! I know my family is surprised I am taking this with a positive heart rather than a negative one, but I am just glad if something has to be wrong with my boy, that at least Down's

    imageVincent Julian born on March 27th, 2013 DX with Down Syndrome image
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  • ((HUGS)) That is great news about his heart and I pray he grows out of it! You have a beautiful son, and a great attitude! He will have a wonderful life with a mama like you[:))]
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  • Thats a lot to handle!! I wish you all good luck & lots of prayers for all of you!
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  • Mmm79Mmm79 member

    You are doing all the right things for your little man.  Way to go, mama! I just googled mosaic downs to learn more.  

    Hopefully, the thrush clears up soon. 

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  • Glad to read this update. Keep up the great work, Mama! Big ((((HUGS))))
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  • I am so glad Vincent will have access to so many great resources.  Very sorry about the thrush; I hope it clears up quckly and you feel better soon.  You are so strong!!  You amaze me.
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  • I hear ya on the not liking water thing! Ive found adding fruit to it helps give it  a flavor which helps me to like it more!

    Vince is such a lucky little mister to have such a great mom for a support system! You are a great voice for you so


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  • It sounds like you have a great plan laid out for little Vince. That's wonderful that his issues, while serious, still seem to be mild cases. I hope the thrush goes away quickly and he continues to do well.

    You're doing awesome, momma! ((Hugs))&

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  • imagedotmbc:
    Ditto PP, At 11 days post partum you really sound like you have your schtuff together. I think you might be super mom
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