DownSyn Forum

JaniesParents · Posted: February 03 2012, 7:30 PM Post subject: New Parents

Hi,

I'm Sara from Philadelphia, PA. My husband Steve and I just had our first child on January 9, 2012. Upon her birth, we found out that our daughter, Jane Elizabeth "Janie", has Down syndrome. Janie was sent to the NICU a few hours after her birth because her PDA duct was slow to close and when she cried she would turn a little blue. She was in the NICU for 5 days and did very well. They wanted to make sure she was feeding OK and she did great bottle feeding (we're still working on breast feeding, but making progress there). She was put on oxygen for the first 2 days but taken off and just monitored after that. By the day we left her PDA duct had gotten significantly smaller. Overall, our experience was very positive. We're very lucky that Janie did not have any other heart issues and has been gaining weight just fine. Since we've been home we've gone to the pediatrician a few times and he says that she's doing well.

It's been quite a shock and I'm still reeling from finding out this diagnosis. Steve seems to be doing very well just taking it one day at a time and enjoying our daughter but I'm very up and down. I go from being completely devastated one day to being OK and even positive about it all the next. We have quite a different road ahead of us than what I was expecting and there are some days where I just feel really sad that Janie has the odds stacked against her in ways that most of us do not. She's so sweet and cute and I just want life to be good for her. I'm very scared. It's nice to look through this forum and see so much encouragement here. I've also looked at some you tube videos of adults with Down syndrome living very fulfilling happy lives, which has been extremely helpful.

Right now, my day to day is mostly just doing the normal new mom stuff (feeding, diaper changing, trying to find time to sleep) but it does feel very different knowing that I'm going to need to become educated about Down syndrome and work to make sure Janie gets the best resources she can. It's all a bit overwhelming right now. We will look for support groups in our area but I thought it would also be good to find an online support group too.

burnsun · Posted: February 03 2012, 7:46 PM Post subject:

Welcome and Congradulations!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Katrina · Posted: February 03 2012, 8:45 PM Post subject:

Welcome !!!! I love Janie's name Very Happy

Katrina

_________________

Peyton and Paige

beckysmum · Posted: February 04 2012, 4:13 AM Post subject:

Hi

congratulations , thats great Janie is doing so well , we all deal with the DS diagnosis differently , the first 6 months was the hardest for me , enjoy your baby girl cant wait to see pics and hear more about you all x

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

TheBradyBunch · Posted: February 04 2012, 11:46 AM Post subject:

welcome to downsyn! Congrats on your daughter!

The up and down is totally normal and most of us here have been through it. In time it won't seem like such a roller coaster, I still have bad days, but they are few and far between now. If you ever need to vent or just talk to someone, please come to us.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

Emdad · Posted: February 04 2012, 11:53 AM Post subject:

Welcome and congratulations on the birth of Janie!
My Emma had some issues that kept her in the NICU for about a week, too.
Reeling is the right word. Frankly, you appear to be regaining your balance rather well, IMHO, but that may not be how it feels to you. Give yourselves permission to grieve the loss of expectations. I do not say this lightly. Try to realize that some time will need to pass for things to sort out.
You used the expression that Janie "has the odds stacked against her." That's one way of looking at it. I'd suggest that you may eventually - in your heart of hearts - see that, in a way, you've won the lottery, odds-wise, when it comes to the person that Janie is and what she'll bring to your lives. The odds are going to change. The game is different.
I have two kids. Intellectually, they are at opposite ends of 'the spectrum.' They both present scary challenges. Parenting is scary to me, still is. I don't mean to diminish your feelings, I'm trying give perspective. My son is about to get behind the wheel of a car. I'm confident in him but mortified at. . . you get the idea.
It's going to take a while for Janie to emerge, for you to see her power and influence in your world. Your challenge right now is to take care of that sweet baby and each other. The knowledge, resources, and other stuff will come in good time.
These are great Moms, here. There is valuable wisdom, practical and emotional to be gained from them. You're one too, already, I can tell.
Jeff
Dad to Sam, 15 and Emma, 12

AliMama · Posted: February 04 2012, 12:08 PM Post subject:

Congratulations on the birth of your daughter and welcome to DownSyn! This is an amazing place for support and information, so I'm very glad that you found us. DownSyn has helped me so much on this journey, and I hope it will help you just as much. Can't wait to "meet" your little girl Smile

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009

JaniesParents · Posted: February 04 2012, 5:58 PM Post subject: Thanks

Thanks everyone for your kind words. I understand that I may at some point feel like it's been a blessing for Janie to have this diagnosis, but right now that feels very distant. I am grieving and it is hard. Good to hear from folks that this level and amount of pain diminishes.

Teafreak · Posted: February 04 2012, 6:36 PM Post subject:

Congratulations! What a beautiful name! The best advice I received in the beginning of this journey is to just enjoy your sweet baby. Smile

The rest will fall into place.
God bless,
Deane

_________________
Deane, wife to Matt and Mom to Kate-the-Great (9 years old)

"A person's a person no matter how small." - Horton

jtkkmom · Posted: February 04 2012, 11:26 PM Post subject:

Welcome & congrats on your new baby girl! How wonderful that she is doing so well!

_________________
Laura - proud mom to my 4 girls

http://downsyndromeupupupandaway.blogspot.com/

http://community.babycenter.com/groups/a6729133/unlimited_potential

youdontknowJack · Posted: February 05 2012, 1:47 AM Post subject:

As others have stated, everyone handled this differently.

For myself, I remember one day when Jack was about a month old. I was going to change him, I was carrying his tiny body in my arms. A realization came to me that regardless of what I am told to expect from him, that I was given this being to do my best by, and I felt I could do that. My best.

The other thing that has helped immensely was for me to focus on our good fortune. Jack's health, his alertness and willingness to interact. His desire to get into things... When people ask me "Is Jack walking yet?" I say, "No, but he definitely will figure it out! He is quite a problem solver!" and proceed to steer the convo into a positive direction about Jack's abilities.

Does that mean thinking about his DS never causes me sadness? No.
But he is healthy, and progressing, and that is more than some parents have.

This is how I have chosen to frame my mind up in order to support the challenges in front of me. You will find a way to do your best.

Enjoy your little girl! I have always wanted one. Smile

[/i]

_________________
Monica Mom of Ayden (10) Zavien (8 ) and Jack (2)

babystpierre · Posted: February 05 2012, 10:25 AM Post subject:

Your post brought back so many memories as my son was born on Jan. 8, 2004. He was our first and the diagnosis was a complete shock. So many of us understand completely your fears and the roller coaster you are on right now.
It is a different path - one that wasn't expected but I just love what Jeff "Emdad" said. It takes a while for your little one to come into her own but you will see her power in this world and you will see this whole situation as a gift. I didn't see it for a long time. I grieved hard and dreamed up all kinds of bad future situations that awaited us.... I wish now that I would have just adored my baby and savored every moment. Literally, every time I see a baby with Down Syndrome now, my husband and I just about die to snuggle with him and take him home with us!!!
Give yourself time to adjust, hold that baby close, and believe me - your fears are waaaaaaaaaaaaaaaaaaaaaaaay worse than your reality will be. I could NOT be happier with our lives together as a family. It's good. Better than good.
Yours will be too.
˜Lauri (mom to Gunnar)

_________________

Sarita75 · Posted: February 06 2012, 12:58 AM Post subject:

Isn't it nice to have found this site? I felt so too. My son is 7 months and I understand everything you described! There are ups and downs. oments you think about it and moments you don't. Congrtulations on your daughter!

Annieo · Posted: February 06 2012, 12:33 PM Post subject:

Congratulations! Love the name (I have a Janie myself).

I grieved like I've never grieved in my life when my son was born. Grieved the loss of the child I expected. Grieved the loss of an uncomplicated future. If someone had told me in those first days that we could trade my son for one without DS and no one would ever know, I would have taken them up on it. I'm so glad I wasn't given that choice. My son is now nine years old and I hardly ever think of DS. He's just one of the kids with his own set of challenges.

I'm glad you found us here. Can't wait to see a picture of your sweet baby girl!

_________________

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

seansmom · Posted: February 06 2012, 2:42 PM Post subject:

Welcome!

_________________

Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs

lespring · Posted: February 06 2012, 3:30 PM Post subject:

Hello and welcome....to a club you didn't really want to join. It's ok. We've all been where you are at some time or another. Or maybe we've gone BACK to that point!

I'm Leah, mom to a bunch of adults, then at home we have Angela 15, Axel 11 and Asher 7, all with DS. Angela has a social life far more busy that her older brothers ever were. Because of who's in our house, we do think a lot about DS around here, but not like, "OMG he has DS". But really, we want to adopt one more time but are afraid to adopt a child who doesn't have DS. He/she might feel left out!!! LOL

I wrote a blog post a couple years ago for new parents. Here's a link to it if you feel like reading.
http://gardenofeagan.blogspot.com/2010/10/message-for-new-parents.html

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)