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I need your prayers please! :( 12 Years, 8 Months ago
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Karma: 0
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My sister has been baking my nephew/niece away for the last 35 weeks and last night her water broke and my niece was born 5lbs 6oz and 19 inches long. (keep in mind dad is 6'4" and mom is 5'11") She is unfortunately 2 weeks preemie and 5 weeks away from full term at 40 weeks. Of course we were beyond happy that she came out screaming and wasn't blue or anything worse.
This is where I need the prayers...
My niece, who is named Brooke, was taken to the nursery quickly because of the preemie condition. While there they discovered an infection, she was turning blue after eating and the doctor thinks she has the early feature signs of down syndrome.
We were heart broken.
Brooke is the first girl in the family and all her tests came back negative while she was in the womb. My sister had the QUAD test done and no one in our family has down syndrome. No one. Long story short...the signs are minimal. The doctor is sending out for a test to be done but we won't know the results for 2 weeks.
I'm attaching two pictures of my niece and prayers, suggestions, observations..anything would be appreciated. I do want to specify that my sister and her husband have firmly said that they will love Brooke either way the test goes. I love her all ready and got to hold her earlier and am going back tonight to do so again.
In the picture the only possible signs of down is her eyes being small and the fat roll around her neck. She carries no other signs. She has a nasal bridge but it's undeveloped..her feet are normal and long, and her hands are the same. Also my nephew (her blood brother) had a fat roll around his neck but he was full term at 37 weeks.
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Last Edit: 2012/03/10 22:17 By MoxyMikki.
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Karma: 5
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Congrats on the newest addition to your family! Hopefully the test comes back clear! She will be in my thoughts <3
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Karma: 12
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Aw, I'm praying for you guys!
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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I know nothing of babies and birth, so I can't help you there but she's one beautiful baby, I know that much! I'll be keeping you and your family in my prayers and I hope the tests come back clear!
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Karma: 29
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No posting or linking to images of minors, folks. now that my adminy job is done...
you have my prayers. My daughter was born 5 weeks preemie and was in the NICU for 14 days. She's now just a little over 3 weeks away form her forth b-day. I know its terrifying, but its amazing how advanced medicine is and what they can do. I'm sure your niece will pull through. Have faith in the medical team and encourage your nieces parents to use every opportunity the hospital gives them to do Kangagroo Care. I'm CONVINCED that is why my daughter pulled through SO fast. There were babys in there that started out healthier than my daughter, but were still there by the time we left with her... the hospital staff said they rarely saw those parents. Whats even more sad is they said that it wasn't uncommon... I suppose its hard to spend time bonding with a child they thought they might loose, but I'm SURE that my bonding and my husbands bonding with out daughter, is what helped her get stronger so fast.
As for her blood condition and everything else, I'm afraid I don't know much on either topics. I hope that everything turns out alright, but this child is a blessing no matter what the results say, so congratulations!
again, your entire family, especially your niece is in my prayers.
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Last Edit: 2012/03/10 22:20 By MoxyMikki.
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Karma: 14
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As a mother of a child with a disability I can say that a lot of these "markers" are often just warning signs of absolutely nothing at all - it's just an overly cautious doctor doing their job. Trust me, a good doctor IS overly cautious, so you've got two good things going for you. 1) Good doctor 2) Low odds of it actually being down syndrome.
Remember that physical signs are by themselves not enough to diagnose something such as down syndrome - they along with other symptoms must be combined to form a proper diagnosis. It is better to be thorough than to jump the gun and have an incorrect diagnosis - the best thing to do is be patient and let the doctor assure that it is in fact down syndrome. MANY babies are born with small eyes and/or fat around their necks (In fact, I've never even heard of this as a sign of any disability. Always thought it was normal - go figure.) and are still perfectly healthy.
The best thing you and your family can do is prepare for the worst and hope for the best. If there is a chance that Brooke has down syndrome then you and your family should educate yourselves on what that means and what it doesn't. Will your lives have to change? Will your sister require more help to parent Brooke than she would a "normally developing" child? Will Brooke require special medical care (I believe most down syndrome patients do, physical therapy being one of them in many cases.) and does your sister's family's medical insurance cover this care? If not, what can the family do to help Brooke get the care she needs? What makes the typical child with down syndrome happy, content, and irritated? Keep the irritants away - add the happy and contents. Find out whatever you can and prepare a "just in case" emergency action plan (in writing!) where everyone in the family has a job so that everything works smoothly if the doctors say "Brooke has down syndrome.".
The most important thing you can do for your sister and her husband is to be there for them in case the doctor says these words to them. I cannot express to you the deep fear and pain that a parent feels when their trusted adviser (a doctor) tells them that their child has a disability. It's even harder when you have to face those words alone - so express your support for your sister, her family, and Brooke as often as you can. It will be the greatest gift you can ever give your sister in her hour of need.
If the doctors say "Brooke does not have down syndrome." then here is what you do:
Have a big welcome home party for Brooke and throw the emergency action plan away! Enjoy!
Remember that maybes (Brooke might have down syndrome is just a maybe.) are just big fat possibilities - how you deal with them is what makes them positive or negative. Even if Brooke has down syndrome, this can be a positive for your family - a whole new adventure is waiting for you either way!
Congratulations on your niece!
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Karma: 29
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thank you zandy for taking the time to write such a detailed reply, and for sharing your own experience and knowledge. I learned a lot just from reading your post. And I really have to agree. A good doctor will be overly cautious. After all, just knowing what COULD be wrong is a way to arm yourself with knowledge to help your child/niece or nephew/brother or sister/second cousin once removed (you get the idea) Thanks again zand for sharing your insights!
I karma-ed you! <3
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Last Edit: 2012/03/11 00:30 By MoxyMikki.
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Karma: 95
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I will be praying for you all.
Congratulations on your niece and I hope that everything turns out ok.
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I claimed Shippo`s mushroom in the claim game.
Living on Earth is expensive, but it does include a free trip around the sun.
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MomoDesu
Minister of Silly Walks
Posts: 739
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Karma: 25
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Sending many good vibes and hope for the best your way.
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Karma: 3
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oh how sad. my prayers are with your sisters family i hope everthing turns out right and that the drs are wrong.
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Thank you to everyone for so much support!
I saw Brooke today and the swelling around her face is going down and she is beginning to look different..more newborn like. We're crossing our fingers that everything turns out ok but of course we are preparing for a positive result.
Thank you Zandriella for such a detailed response,my heart soared at your words and I told my sister and she said that she plans on donating to the down syndrome foundation regardless of either outcome. As a family I think we have come to a neutral overall feeling about this situation and we're ok. My sister has support from me (I live with her while her husband is in Korea for the Army) and all the Grandparents are being amazing. One Grandma is into holistic and organics and she is researching remedies to help with the down..if Brooke has it.
Of course I will keep everyone updated and once again...THANK YOU!
Every single one of you is amazing!
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Hi my name is kait, and when i read your post i had the overwhelming urge to respond:D I hope the baby's test does not come out positive and I am very much so praying for her health. When i was in high school I volunteered at a program called Best Buddies, It's for children with physical or mental disabilities in school. While there i had the chance to learn and interact with kids who had mild to sever down syndrome, autism, aspergers and a whole slew of physical conditions. Down syndrome is contracted when a baby develops an extra chromosome, of course you may already know this:D The point of me responding was to tell you that even if the baby is diagnosed there is a lot of help out there tons of organizations and groups with people who know what you are going through and can help. I have two cousins with autism, not nearly the same but still hard to deal with, who are beautiful, smart, and funny. One of my buddies in high school has a mild case of down syndrome and she lives a pretty normal life. She has a job and a boyfriend who she was just recently engaged too. anyways what i'm trying to say is that this is not the end! Be strong and supportive it will be hard physically and emotionally if she does get diagnosed but I will pray and so will others.
I really am hoping for the best<3
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Karma: 3
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You most definitely have my prayers. I know the hardest part is waiting. One of the questions that crosses a parent's mind at a time like this is... "What kind of life will my child have and will the child be accepted by her/his peers as they grow up?" It goes without saying that your family will love your niece. I'd like to offer you some encouragement that she will be accepted by others as well.
I know that there are rules against posting links to images of minors. I'm not sure if that includes public forums. (I know Moxy will clarify this once she reads this. She's so good at her job. Thanks Moxy.) For those that would like to check this out, you can search for it.
The site is the Azle Texas High School website. Find the slideshow from this year's Homecoming. Our elected Homecoming Queen has Down Syndrome. Of course it made our local paper. It was also a featured story on the Yahoo main page at the time. Doesn't get more public than that. If Moxy says this is acceptable according to the rules, I will edit this and post the link to the slideshow.
Whatever the tests say, with the love of your family and others, your niece will have a great life.
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Re:I need your prayers please! :( 12 Years, 8 Months ago
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Karma: 10
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I read your request and just had to reply to your note. Of course Brooke has my prayers along with your entire family. I just wanted to offer an alternative view. If (God forbid), the worst happens and she is diagnosed with Down's Syndrome, she is already one step ahead because she has a family that loves her no matter what. I hope you know what a gift that is, because so many can't handle the idea of a disabled child. With the love and care of your family, there is no reason for her not to grow up as a wonderful young lady, Down's or not.
May God bless you, Brooke and your entire family.
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Re:I need your prayers please! :( 12 Years, 7 Months ago
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Karma: 9
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I know that this post is a little old...but you can never have too many people praying! So I just wanted to add my congrats to your family, as well as the assurance that they all, but especially the new addition, will be in my thoughts and prayers.
I would like to add an experience to give even more hope. A couple whom I know had their little girl quite a few weeks premature. She stayed in the hospital for at least a month (if I'm recalling correctly). She just recently celebrated her first birthday, and while she's smaller than most other kids her age, she is one of the happiest little things I've ever seen. Her parents love her so very much (perhaps more, if that's possible, because of the circumstances surrounding her birth). I tell you this as hope for the future ^-^ Who knows what God has in store for her and your family?
God bless!
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