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Just diagnosed today, hubby out of town, lot's of questions.

 
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Carter's mom



Joined: 30 Jan 2008
Posts: 4

PostPosted: Wed Jan 30, 2008 1:10 pm    Post subject: Just diagnosed today, hubby out of town, lot's of questions. Reply with quote

Hello members,

I am Sara, mommy to Carter a beautiful 10 week old baby boy.

The first item of concern is that I just got a call from the geneticist this morning saying Carter does have MW. My husband is out of town for work. I don't know if I should tell him while he is out of town. I think I should but I feel awful, he is in a remote location so it will be tough for him to just jump on a plane to get home. Also the main freeway between our airport and the house has been closed off and on due to ice an snow.

Other than telling my husband I am sure I will have a TON of questions and when I find the energy I will post more of Carter's story, he does have Hirschsprung's and had a pull through surgery at 10 days old. He also has a severe case of hypospadias and a heart murmur, PDA and VSD, of which I can't remember what they stand for at the moment.

Carter is a joy of a baby, a serious little boy, but is smiling and developing just as we would expect in a healthy little boy!

Meet Carter, I'm his mom Sara and we have a Pug Co-Pilot. Hubby's name is Scott.


And a more recent one of Carter laying on his Pug sister.
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Daisymum



Joined: 19 Jan 2008
Posts: 4
Location: Ontario, Canada

PostPosted: Wed Jan 30, 2008 8:48 pm    Post subject: Reply with quote

Hi Sara....
Our little Nicholaas (22 days old) was just given his clinical diagnosis about a week ago, his blood went off to the lab for the DNA work today. Our boy is still in hospital with a fresh colostomy, they are waiting till he is older to do the pull through. He also has a hypospadius, heart issues, and agenisis of his corpus colosum. We will leave his hypospadius as is for now and are working on getting him home soon.

I have a billion questions too...lol..and a few answers..lol..
I am wondering how many other moms out there had/have issues or difficulty with breastfeeding because of their baby's smaller jaw. That's a hurdle we are still working on, though I have found that the Gerber bulb pacifier really really helped him get it out and moving to feed properly.

I started a group on Facebook called "Life with Mowat Wilson Syndrome" Please check it out and add whatever you feel comfortable sharing. I haven't posted anything yet, simply because I have been living at the hospital,lol.
Looking forward to hearing from you...
Anna
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Carter's mom



Joined: 30 Jan 2008
Posts: 4

PostPosted: Sun Feb 03, 2008 10:12 pm    Post subject: Reply with quote

Anna, nice to meet you, I am so sorry to hear of your son. I don't have a facebook account, but may join.

May I ask where you are located, we are in Bakersfield, CA.

Carter had the Hirschsprung's pull though surgery at about 12 days old, hypospadias and minor heart issues. He also has the MWS looking ears and his head is on the small side. Other than that he is doing wonderful at home and hitting all the milestones at the moment.

He did have trouble breast feeding and with everything that happened he ended up being bottle fed and I pumped for him. He is now on formula which I hate, but it just ended up that way.

I would encourage you to breast feed if you can, as I know with their intestinal issues it has to be the best thing for them, I was devastated when I was not making enough milk for Carter.

My email is sarabell661@yahoo.com if you'd like to get in touch.

Daisymum wrote:
Hi Sara....
Our little Nicholaas (22 days old) was just given his clinical diagnosis about a week ago, his blood went off to the lab for the DNA work today. Our boy is still in hospital with a fresh colostomy, they are waiting till he is older to do the pull through. He also has a hypospadius, heart issues, and agenisis of his corpus colosum. We will leave his hypospadius as is for now and are working on getting him home soon.

I have a billion questions too...lol..and a few answers..lol..
I am wondering how many other moms out there had/have issues or difficulty with breastfeeding because of their baby's smaller jaw. That's a hurdle we are still working on, though I have found that the Gerber bulb pacifier really really helped him get it out and moving to feed properly.

I started a group on Facebook called "Life with Mowat Wilson Syndrome" Please check it out and add whatever you feel comfortable sharing. I haven't posted anything yet, simply because I have been living at the hospital,lol.
Looking forward to hearing from you...
Anna
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Daisymum



Joined: 19 Jan 2008
Posts: 4
Location: Ontario, Canada

PostPosted: Mon Feb 04, 2008 6:05 pm    Post subject: Reply with quote

Hey there,
We are in Hamilton Ontario, Canada.
I was having alot of trouble with milk supply, ( have been breastfeeding for 9 yrs, all my babies+) but Nicholaas had me stumped. The lactation consultant at the hospital and my Dr gave me a perscrition for Ran-domperidone...WOW...I have enough milk now, even with his weak suck and little jaw. If you really are still interested I have heard many moms say that that medication resarted even a totally dry mommy.
Our boy will likely be home for Valentines day...WHOOOHOOO. We can hardly wait.
TTYL
Anna
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