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Update from Anne on Kaiden


Forum: Pregnancy and Motherhood After Loss

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  #1  
January 31st, 2009, 04:00 PM
*Bobbie*'s Avatar Platinum Supermommy
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I am just going to copy and paste the PM:


Hey Bobbie, I got your text. We got confirmation of Down Syndrome this morning. The good news according to the dr is that Kaiden got to skip the worst parts of Down's - he doesn't have the bowel obstructions, severe heart problems, he has excellent musculature, he is very active, and he is quite large for his gestational age. They said he will have some sort of mental retardation, but we won't really see that until he is about 4 months of age. They cannot give us any indication of the severity of it. It might be severe, or he could be on the high functioning end. If we are lucky enough in that respect, he won't be an A student by any means but able to function well on his own, with a life expectancy of roughly 50 years. He does have a heart issue but that is due more so to him being a preemie and they are already treating it with something called neoprofin (baby ibuprofen) and if that doesn't work, there is another medication they can try, and if that doesn't work he will need surgery. Down babies do not typically respond to the medications as well as "normal" babies so we have to wait and see on that too. They may choose to go straight to surgery instead of trying the 2nd medication - just depends on how he is doing. The good news here is that the heart issue doesn't seem to be affecting him too much, he is pretty much on room air (forced) rather than forced oxygen, and his color is excellent, as well as him being very active. The heart issue is causing pulmonary hypertension and CO2 retention, so once he's past that then really it's just getting him to the gestatinal age where he would normally begin learning the suck swallow breathe stuff. We might get to try breast feeding next week or the week after. gotta say I was impressed, my colostrum came in 10 hours after the birth, and my milk is already in. Tried out the Medela Pump In Style I bought last October used but the motor was pretty weak so we just went ahead and bought the newest of the new Medela Pumps, the Freestyle. LOVE IT!!!!!

Please update the girls, I probably won't be on JM much since we will be traveling up here every day to spend with him. Dh has elected to work on site rather than from home - he will drop me off in the mornings and then come over in the afternoon and stay till evening every day until Kaiden comes home. His work is only 15 min or so from the hospital, rather than the hospital being 80 miles from home. I hate being away from the dogs but I will hate being away from Kaiden too so this is the best compromise we can make. This way the dogs get used to me being home, and get used to Kaiden's scent before we get to bring him home. And it is really hard to stay up here in the hospital listening to all the rest of the mothers and their newborns thru the walls. I'm having a really hard time with the diagnosis but there is nothing we can do to change it, just work harder to teach him things.

Anne



I am so happy to hear he has a mild form of it. I think that Kaiden has a very bright future and two parents who are going to love him and watch him grow without seeing him as having a disability. He really is a blessing Grow strong little man!!!!
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Bobbie mom to : Jeremy (22) Amanda (19) Matthew ( 4) and Daniel (3).... RYAN DAVID 1/4/14 8lbs 10oz 20 3/4 inches!!! My miracle happened!
step-mom to: Stephany (23) and Krista (20)
step-grandma to: Wesley (3), Rosemarie (7 months)



On 1/31/12 at exactly 16 weeks pregnant Noah came too soon. He was our 7th loss
If you would like to see pictures of my sweet (but tiny) boy they can be viewed at www.caringbridge.org/visit/noahdarrohn they aren't the easiest pictures to look at but I am willing to share them with anyone who would like to see them <3
On August 2, 2012 we lost Sarah at 17 weeks. She was our 8th loss Her pictures can be viewed at http://www.caringbridge.org/visit/sarahdarrohn
There is no known explanation for my losses.

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  #2  
January 31st, 2009, 04:26 PM
Danielley08's Avatar Mega Super Mommy
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I definately agree that Kaiden has a very bright future ahead of him! I know Anne and her DH will do everything in their power to make sure Kaiden has the best life ever!!!

I'll be praying that the meds work for the heart problem...I'd hate for him to have to go through surgery after being such a trooper so far!

Once again...congrats Anne and welcome to the world Kaiden!!
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  #3  
January 31st, 2009, 05:17 PM
Sabina's Avatar Mega Super Mommy
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Quote:
I am so happy to hear he has a mild form of it. I think that Kaiden has a very bright future and two parents who are going to love him and watch him grow without seeing him as having a disability. He really is a blessing Grow strong little man!!!![/b]
Very well said Bobbie and just what I was thinking but probably couldn't have written it as nice. I know he will be a very bright little man with all the love you give him Anne. I am praying the poor little guy doesn't need surgery though.
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  #4  
January 31st, 2009, 06:09 PM
*becky*'s Avatar Mommy to Bailey & Camryn
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I know that Anne and her DH will raise a wonderful son, no matter what condition he has!

I will pray that the meds work and he doesn't surgery.

Thanks for keeping us up to date Bobbie!
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  #5  
January 31st, 2009, 06:43 PM
dee68's Avatar Platinum Supermommy
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Kaiden is a blessing to you both just as the two of you are to him....he will thrive on the unconditional love he will be given.

I truly hope the meds work and surgery will not be needed.

many prayers and all of our love and support goes out to all of you
now give that little man a smooch from all of his JM aunties !
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  #6  
February 1st, 2009, 12:01 AM
angelmomjen's Avatar Mega Super Mommy
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Kaiden has a wonderful set of parents who are going to raise a beautiful child who thrives in this world. Im sure of it. I pray he does not need surgery and can come home very soon. Many hugs and prayers for you all sweety.
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  #7  
February 1st, 2009, 06:19 AM
IAMommy's Avatar Platinum Supermommy
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Quote:
Kaiden is a blessing to you both just as the two of you are to him....he will thrive on the unconditional love he will be given.[/b]

I completely agree with what dee and everyone else has said. Kaiden is a blessing, and your love and devotion to Kaiden will make all the difference in his life, and he will stive in this world.

Many prayers that Kaiden will not have to have surgery.
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  #8  
February 1st, 2009, 10:03 AM
princesskate's Avatar Platinum Supermommy
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I agree with everything everyone has already said.. and I hope he doesnt have to have surgery xxx
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  #9  
February 1st, 2009, 01:03 PM
keekopeeko's Avatar Platinum Supermommy
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Thank you for the update.. I have been around a family that has 3 boys.. the oldest of which has downs and he is the most lovable little kid! I know it must be hard to swallow.. But He is lucky to be with two wonderful parents who will love him through everything..

~Em
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  #10  
February 1st, 2009, 08:14 PM
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Kaidan is one very special little boy who is loved beyond belief. May he continue to breath on his own, and get strong.
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  #11  
February 2nd, 2009, 09:20 AM
kalis's Avatar Platinum Supermommy
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i hope he continues to do well and i am very happy that he does not have some of the physical problems that sometimes goes along with Downs. lots of HUGS to you and your family Anne and i continue to keep you in my prayers.
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  #12  
February 2nd, 2009, 09:31 AM
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I agree with what everyone has said here, he is such a little miracle and such a strong lil fighter, he is going to thrive and shock all of his dr's with how well he does in life;
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  #13  
February 2nd, 2009, 05:17 PM
..Jessica..'s Avatar Platinum Supermommy
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I agree with the other ladies. I'm very sorry that you're going through this Anne, I know you and DH will give Kaiden the best life he possibly can have. He's going to become an amazing little boy and man. I can't wait to watch him grow!
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  #14  
February 3rd, 2009, 11:06 AM
jademyst13's Avatar Platinum Supermommy
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I agree with everyone else. I hope he won't need surgery, but I'm sure he will be ok either way. I think not only are you (Anne) blessed to have Kaiden, he is blessed to have such great parents. God knew he was giving him to special parents that would help him be the best he can be. I haven't been on the boards much, so I may have missed it, but I can't wait to see some pictures of him!
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