DownSyn Forum

LaLouve · Posted: April 09 2011, 4:08 AM Post subject: He is here!

Late last night I gave birth to our little boy. 1.95 kilos and 44 cm at 35 weeks... We have known about the DS since week 14, but I must admit it is hard. He has all the classic DS features in addition to being small and premature. I feel little connection to him, I feel a little like there is nobody there. At the same time I worry about any additional health issues that might come up or be discovered, I do so not need anything else at the moment... We do know he has an AVDS, but hopefully he does not need surgery for a couple of months. He is breathing on his own. Nervous about the talk with the doctors that we will have later today..
Oh, my heart is filled with mixed emotions, and far more negative emotions than I had hoped for. I guess I was not as prepared for this as I thought, and I also feel that because he came so early, I am not yet ready to be a mother of two...

well, that is my life at the moment. I know you will all tell me my feelings will change, but it is hard to see now.

LinMac · Posted: April 09 2011, 7:44 AM Post subject:

Congratulations on the safe arrival of your new baby boy! What name did you give him?

My son came in week 37 and was 1.89 kgs....small indeed! And he too went to the SCBU for 3 weeks!

Take it one day at a time and hold him as much as you can. For me holding Robert close to my heart was so healing.
When I held him close to my heart nothing else mattered except the love that flowed between us!

Love to you at this time....

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)

First day at school

Tigger · Posted: April 09 2011, 8:41 AM Post subject:

Congratulations!! It really is like getting hit with a reality bat when your baby is born and does have DS. Up until the birth I think there is sometimes a bit of denial but I remember when Talitha was born and she obviously had DS and it was very confronting.

I made the decision to love her, and be there for her no matter what and although I couldn't breastfeed her (although I did put her to the breast quite often) I learned by about day 3 to tube feed her and I did all her feeds except for maybe 2 until she was able to leave hospital 3 weeks later. That really helped me bond with her as normally I bond with my babies through breastfeeding. It helped me feel like her Mum if you know what I mean. I watched the nurses tube feed the other babies and I felt sad that they weren't being fed by their Mums because feeding is not just about nutrition.

I would spend hours just sitting holding her in the NICU. I quickly grew to know her and her moods and to love her. Your little man has the same needs as any other baby and he needs you.

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

LaLouve · Posted: April 09 2011, 10:36 AM Post subject:

It is already getting a little better, much because he had some problems that made o
me so afraid of loosing him and through that realising that it is not him I hate and don't want, it is the DS and the heart problem...
What a great idea to do his feedings, I want to try to do that. Sometimes I feel almost go the way for all the doctors and nurses, but he is my son... I have given him a little of my breast milk with a syringe and to see his little tongue search for more was heart warning.

Kasey · Posted: April 09 2011, 12:34 PM Post subject:

Congrats! Paige did not have the same issues, but was in the hospital for 5 weeks. I found that taking on as much of her care as possible really helped. Paige was our first and that did make it easier to be at the hospital all the time. We eventually got into a routine, and as much as I hated the hospital, I loved to have the time to just bond with my baby!

_________________
Kasey, mom to Paige (4), Leigha (0!)

AliMama · Posted: April 09 2011, 1:28 PM Post subject:

I remember that feeling of disconnection, because I didn't yet know my daughter as a person, I only knew her as a diagnosis. She seemed a little like some kind of alien to me those first few days. Like you said, it will get better. Hugs,

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

Momma2Bean · Posted: April 09 2011, 5:07 PM Post subject:

Congratulations on your baby boy! Most of us have been exactly where you are...those early days, especially, are like a blur now. We didn't know prenatally so the shock was stunning and I honestly thought I couldn't bear it. But, I quickly realized something very simple...that in the midst of all my anguish, pain and distress, this little tiny baby made me happy. A happiness I'd never known -- he is my first child. Not that I necessarily felt "connected" in those early days, which was also difficult to be with, but I really didn't know what to expect either. I remember one mom of a child a couple of years old at the time, who said something that really struck me and whenever I was having a particularly bad time, I remembered it (and still reflect on it every now and then) "you will love him more than you can possibly imagine, just give it time...he will show you the way." Today, Lucas is the absolute light of my life and I couldn't imagine life without him nor would I ever. He is an awesome kid and I am proud to be his mom!

Give yourself time to be with all your emotions and know that everything you're feeling is very normal and totally okay. Take comfort in knowing that there are many, many people who have been there, and are here, to help you through. Let your son lead the way. It will all get better and your love will grow and your bond will be unbreakable.

Take good care. Look forward to seeing photos and hearing updates!

And CONGRATS again!

_________________
Sandy, momma to Lucas "the bean" (10/15/06)

TheBradyBunch · Posted: April 09 2011, 9:33 PM Post subject:

congrats on the birth of your child!

Forget all the DS stuff, right now, he's just a baby. He needs to eat, he needs diaper changes and snuggles, just like any other baby.

_________________
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"

JanetG · Posted: April 11 2011, 8:15 AM Post subject:

LinMac wrote:

Take it one day at a time and hold him as much as you can. For me holding Robert close to my heart was so healing.
When I held him close to my heart nothing else mattered except the love that flowed between us!

This was totally me. We also knew at 15 weeks and as prepared as I thought I was, actually having Jacey here was totally different. I remember looking at her, only being able to see her features that screamed Ds, and feeling very sad - for her, for me, for our family. When I held her close, though, all seemed right with the world. She became my little slice of heaven.

Congratulations on the birth of your baby. Hold him, feed him, and most of all, love him... and give yourself time. HUGS!

_________________
Janet (45) and Jeff (45)
Joshua (angel) '85 (1 day old)
Sarah-age 23
Jaret-age 6
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

LinMac · Posted: April 11 2011, 9:36 AM Post subject:

Just wondering how your're doing? And your son?
Is he feeding? What's his name?
Stop by and drop us an update.....you're in my thoughts!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)

First day at school

Will · Posted: April 11 2011, 11:19 PM Post subject:

What "Brady Bunch" said. He's a baby; he's just the kind that stays in each stage longer. You likely feel like you put your hand in a light socket; I sure did when Liam came. We adjust. What else can we do?

_________________
Father of Liam (DS, '08 ) and Charles ('10).

earlyam · Posted: April 15 2011, 9:27 AM Post subject:

Congratulations!!

_________________
Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

youdontknowJack · Posted: April 19 2011, 4:23 PM Post subject:

If I could offer a slightly different perspective... this is your second child.

Any mother of more than one knows that that second baby is a HUGE game changer, DS or not!!! I know that when Zay(#2) was born, I had a tantrum ridden toddler. Having another was an overload.
I have no idea how old your other child is, but I promise, its actually easier in the long run. Two is better than one. Smile

That second one changes how you run your house, though. You are going to learn household management all over again.
Not that subsequent children don't do that too...
but that second one. whew.

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