Re: twin preemies just diagnosed

[Guest guest]

Hi Deanna,

You have found the right place to come. Congratulations on the birth of your beautiful boys. My son was also diagnosed with hydrops at about 24 weeks. Luckily for Davey, they treated it in utero (stuck a needle into his chest cavity to remove the fluid) and he recovered before birth. I will keep your children in my prayers.

mom to Amy 15, Kelsey 12, Dave (DS) almost 3, and Will almost 3.

twin preemies just diagnosed

I just delivered my monoamniotic twin boys 1/20/03 at 29 weeks gestation. They are in NICU on vents, multiple cardiac drugs to maintain BP, on bili lights, etc. Jordan was diagnosed with hydrops at 20 weeks gestation and I was told he probably would never make it. He was coded right after birth, but he is here still by the grace of God. They have had blood transfusions and each has already had sepsis in the past couple days. The nurses just keep teling me how sick they are. Do they expect them not to make it? I am really getting depressed. Learning about the Down's today has been the easiest news to take so far. Strange isn't it? I was told at 15 weeks that my AFP was low and they would probably have Down's. That was expected, but all the drips and chest tubes, etc has been awful. I am at my wits end. All I do is cry. I just want to get them home so we can become a family. Any one else out there have Down's preemies with all of these problems? Deannahttp://DSyndrome.com/Multiples

[Guest guest]

Deanna,

I know there are some mom's on this list who have endured the NICU with preemies--we welcome you to our group and I will pray for you and your babies. We have all been through a lot in this group and have lots of information and experience to help support you.

Marcia Mom to Sara (DS) and 8 and Lucas 12

[Guest guest]

Deanna, congratulations on the birth of your sons. You are in the right place to find info of all types.

I will keep you and your family in our prayers.

I am , biological mom to 9yr(DS) and Dayton 4yr(DS) and adopted mom to 8months(DS). was born at 29 weeks. I know it was up and down from birth to 2months in NICU. We got him at 2 months and from 2 months to 6 months we was in the hospital 3 1/2 months, he had open heart surgery,fundo(reflux) and a feeding tube and now on oxygen. We battle with asthma and allergies along with some reflux(possible) and I also think he has large tonsiles blocking the airway. He also has fluid in ears but tubes have to wait.

I know what you mean, the Down Syndrome is the least of everything when they are sick. I do wish you the best of luck and (((HUGS)))

If you like to talk you are welcome to email me.. medr2215@...Cynthia,mom to 9yr(DS),Dayton 4yr(DS) and 8months(DS)

[Guest guest]

HI DEANNA

I JUST WANTED TO DROP YOU A LINE TO LET YOU KNOW I AM PRAYING FOR YOU AND YOUR FAMILY AND ESPECIALLY YOUR BOYS. I DO NOT HAVE TWIN PREEMIES BUT I DID HAVE TWIN GIRLS DEDEMBER 28 2002 AND ONE HAS DOWN SYNDROME. YOU HAVE A GREAT ATTITUDE AND I TRULY HOPE YOURS AND MY AND EVERYONE ELSE'S PRAYERS ARE ANSWERED FOR YOU.

GOD BLESS YOU AND YOUR BOYS

SHERRILL

MOM TO JILLIAN, 5--NATALIE AND EMILY(DS) 1

[Guest guest]

I have twin boys - Braden and Grant. Braden has Mosaic Down Syndrome and had a very serious heart defect which has since been repaired. He was also a very sick little boy when he was born. The tubes, monitors and their tinyness can be overwhelming but I'll tell you this. There seems to be an inate determination, a sheer will to live in these kids. They will continue to amaze you everyday. They embrace life. They want to live and be your babies. They will enrich your life because of it. No one could have conveyed to me the emotion and pride I have for Braden. He had to fight to breathe. He had to fight to have his heart beat. He had to fight to eat. He had to fight to sit, to crawl, to stand. But never have I seen anyone fight with such a smile on their face or in their heart. Hang in there and know you are not alone. Love them and they will grow! Bethany mom to Allie (7), Cameron (3), Grant and Braden(DS) (15month fraternal twins) tbmirka@...

>From: "deannatotten "

>Reply-To: Multiples-DS >To: Multiples-DS >Subject: twin preemies just diagnosed >Date: Tue, 28 Jan 2003 05:20:02 -0000 > >I just delivered my monoamniotic twin boys 1/20/03 at 29 weeks >gestation. They are in NICU on vents, multiple cardiac drugs to >maintain BP, on bili lights, etc. Jordan was diagnosed with hydrops >at 20 weeks gestation and I was told he probably would never make it. >He was coded right after birth, but he is here still by the grace of >God. They have had blood transfusions and each has already had sepsis >in the past couple days. The nurses just keep teling me how sick they >are. Do they expect them not to make it? I am really getting >depressed. Learning about the Down's today has been the easiest news >to take so far. Strange isn't it? I was told at 15 weeks that my AFP >was low and they would probably have Down's. That was expected, but >all the drips and chest tubes, etc has been awful. I am at my wits >end. All I do is cry. I just want to get them home so we can become a >family. Any one else out there have Down's preemies with all of these >problems? > Deanna > The new MSN 8: smart spam protection and 2 months FREE*

[Guest guest]

Hi Deanna,

God, I just want to hug you so bad right now! You hang in there, and if by

chance you're in the Houston area and need a hug and a shoulder to cry on,

call me. . I do not have personal experience like yours but I

feel your pain just the same. Please keep us posted. I will pray for you

LOTS.

Love,

----Original Message Follows----

"

Reply-To: Multiples-DS

To: Multiples-DS

Subject: twin preemies just diagnosed

Date: Tue, 28 Jan 2003 05:20:02 -0000

I just delivered my monoamniotic twin boys 1/20/03 at 29 weeks

gestation. They are in NICU on vents, multiple cardiac drugs to

maintain BP, on bili lights, etc. Jordan was diagnosed with hydrops

at 20 weeks gestation and I was told he probably would never make it.

He was coded right after birth, but he is here still by the grace of

God. They have had blood transfusions and each has already had sepsis

in the past couple days. The nurses just keep teling me how sick they

are. Do they expect them not to make it? I am really getting

depressed. Learning about the Down's today has been the easiest news

to take so far. Strange isn't it? I was told at 15 weeks that my AFP

was low and they would probably have Down's. That was expected, but

all the drips and chest tubes, etc has been awful. I am at my wits

end. All I do is cry. I just want to get them home so we can become a

family. Any one else out there have Down's preemies with all of these

problems?

Deanna

_________________________________________________________________

MSN 8 with e-mail virus protection service: 2 months FREE*

http://join.msn.com/?page=features/virus

[Guest guest]

Hi , and ,

Welcome to our group. So glad you found us! What a beginning you had; but what a beautiful story you are able to write with such a great outcome for . Thanks for sharing.

I am Marcia, mom to Sara, who has Down Syndrome and , who does not. They are 8 years old. We were very blessed in that Sara was healthy at birth. It turned out her twin brother, , was the one who had to have a PDA repair at 13 months. I guess he knew she would have her challenges in life, so he was willing to take one of them! Since then, Sara, has had a lot of sinus issues, so had sinus surgery, this summer. It seems to have helped, so far (Knock on Wood).

Sara is in first grade and loves school--does math and reads a bit--has a number of friends who are very important to her right now--the big thing here is the "sleepover". She has been in dance since she was four and is in a couple of recitals a year.

We live in Sisters, Oregon. I look forward to hearing more about you and your family.

Marcia

[Guest guest]

Deanna,

I am new to the group (just found out that there are others like us out

there....) and haven't introduced myself yet. I have fraternal twin girls

that are 5 years old now ( (DS) and ). I live in Scituate, MA -

south of Boston.

My girls were born at 33 weeks and were also in the NICU. was

actually in the NICU for 3 months after birth and then transferred to a

Children's hospital in Boston for Heart surgery.

My husband and I had gone through infertility and conceived my girls through

IVF so my pregnancy was followed closely. I also knew during pregnancy that

would probably have DS (via an AFP and level 2 ultrasound) and that

also had a complete AV Canal Defect that would require open heart

surgery after birth.

I, like you, was totall unprepared for all of the medical complications that

would follow. was in very fragile health and I was told repeatedly

that she probably may not pull through. at 1 week of age, developed

NEC - an intestinal infection - and had a portion of her large intestine

removed and a colostomy placed - kelly also coded at this time. also

had a PDA ligation (minor heart surgery) immediately following. We also had

multiple blood tranfusions, Jaundice, etc. She remained in cardiac failure

until she finally grew to 6 pounds after 3 months and they were able to

perform her open heart surgery ('s heart failed again during this

surgery, but she pulled through). did not come home with us for the

first time until she was 5 months old. also returned to the hospital

frequently that first year for a ruptured apendix, RSV, pneumonia,

placement of a feeding tube and removal of her colostomy.

The good news is that is doing great today. No colostomy, no feeding

tube (she eats like a champ) and her heart is strong. She is a bit small but

she's a cutie pie and such a happy little girl!!

I know the desperation that you are feeling only too well and remember my

days in the NICU vividly. This is a time that you will never forget, but

you will survive and things will be so much better than you can ever imagine

right now.

The only advice I can give you that may or may not be appropriate for you is

that my husband and I went home to sleep every night. Sometimes, we'd leave

the NICU and go out to dinner on the way home and have a glass of wine to

feel like we were part of the " real " world. For me, sleeping was a key

factor in getting through that time.

Please know that my thoughts and prayers are with you and if you ever need

to talk please feel free to e-mail me or call me.

lots of love, Sue McCowan (781)545-4121

> "

>Reply-To: Multiples-DS

>To: Multiples-DS

>Subject: twin preemies just diagnosed

>Date: Tue, 28 Jan 2003 05:20:02 -0000

>

>I just delivered my monoamniotic twin boys 1/20/03 at 29 weeks

>gestation. They are in NICU on vents, multiple cardiac drugs to

>maintain BP, on bili lights, etc. Jordan was diagnosed with hydrops

>at 20 weeks gestation and I was told he probably would never make it.

>He was coded right after birth, but he is here still by the grace of

>God. They have had blood transfusions and each has already had sepsis

>in the past couple days. The nurses just keep teling me how sick they

>are. Do they expect them not to make it? I am really getting

>depressed. Learning about the Down's today has been the easiest news

>to take so far. Strange isn't it? I was told at 15 weeks that my AFP

>was low and they would probably have Down's. That was expected, but

>all the drips and chest tubes, etc has been awful. I am at my wits

>end. All I do is cry. I just want to get them home so we can become a

>family. Any one else out there have Down's preemies with all of these

>problems?

> Deanna

>

_________________________________________________________________

The new MSN 8: smart spam protection and 2 months FREE*

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[Guest guest]

Marcia, I would love to enroll Tara in Jillian's dance company..........

but I fear she would not take direction well............the rooms they

practice in is ofcourse surrounded by mirrors. Tara LOVES looking at

herself in all mirrors, she would probably just stand there and talk to

herself for the hour long class!!

I would like to try her in one of their toddler classes this fall when

she'll be 4 1/2 years old, ......

How did you know when Sara was ready, what kind if class did she try

first?

Thanks!

Gail.........Bobby 9, Jillian 6 1/2, and Tara{Ds} 3 3/4

[Guest guest]

Hi Deanna, Congratulations on the birth of your twin boys. We live

in Auckland, New Zealand. We have non identical twin boys who both

have DS. They were born last April at 34 weeks. They were in NICU

for a couple of weeks but were in reasonable health and did not need

ventilation. A book that we found very useful is called Babies with

Down Syndrome: A New Parents Guide, written by K Stray-Gunderson and

published by Woodbine House. Anyone who has new babies with DS

would find this book helpful. It is easy to read and gives a lot of

good information. Take care. Ali Whittington, Mum to , 11,

Ben, 5, and and THomas 9 months non identical twins both

with DS

> I just delivered my monoamniotic twin boys 1/20/03 at 29 weeks

> gestation. They are in NICU on vents, multiple cardiac drugs to

> maintain BP, on bili lights, etc. Jordan was diagnosed with

hydrops

> at 20 weeks gestation and I was told he probably would never make

it.

> He was coded right after birth, but he is here still by the grace

of

> God. They have had blood transfusions and each has already had

sepsis

> in the past couple days. The nurses just keep teling me how sick

they

> are. Do they expect them not to make it? I am really getting

> depressed. Learning about the Down's today has been the easiest

news

> to take so far. Strange isn't it? I was told at 15 weeks that my

AFP

> was low and they would probably have Down's. That was expected,

but

> all the drips and chest tubes, etc has been awful. I am at my wits

> end. All I do is cry. I just want to get them home so we can

become a

> family. Any one else out there have Down's preemies with all of

these

> problems?

> Deanna

[Guest guest]

Hi Deanna - I'm so glad you found us!!

I'm Judi - Mom to Sam & , identical twins w/DS. They were 26

weeker preemies, weighing slightly over 2lbs each at birth. Sam and

just turned 6 on the 29th of December and are in

Kindegarten. We didn't get their diagnosis of DS until they were

about a week old.

Sam spent 16 weeks in the NICU and 16 weeks. I know EXACTLY

what you are going through!!

Just take a deep breath, and take it day by day. I know there's a

lot going on and you have entered a whole new world of dealing

w/Dr's, nurses, hospital's etc. Try to have a talk w/the Dr's and

MAKE them talk to you and explain everything that's going on so that

you understand it! I think they are more willing to stop and

actually spend time and " talk " to parents who put forth that effort.

Plus, it will help you in the long run also because most likely you

will end up having a specialist or two added to the list of Dr's when

the boys are discharged.

I read your other post too about the clothes. Hang on to those

preemie clothes, even if your boys are at the hospital a long time,

eventually they will be able to wear preemie clothes! My boys did

for quite a while! It was after they had stabilized a bit and had

moved from the special care nursery to the intermediate care

nursery.

One thing I did was put a picture of me and my DH in each of the boys

beds. It kind of made me feel like I was still there " watching " over

them even when I wasn't there. I also think it helped the staff get

to know us a little better too. If you have any other children, have

them draw pictures and hang them around their beds too.

And prayers helped tremendously too!! I will keep your boys in my

prayers. If you want to talk to a " been there, done that " mom,

please feel free to email me at judig2@.... I'd love to be

able to " talk " to you over the phone too if you want but would rather

swap phone numbers privately thru email, than here on a public list.

Hang in there! I got through it, my boys are healthy and growing

like weeds now six years later. With faith and prayer (and good Drs

and nurses) you and your boys will get through this too!

Hugs

Judi

[Guest guest]

Hi Gail,

I enrolled Sara in dance when she was four. She had one teacher for two years and then when she was six, she began with a new one. The first teacher she had was a young (in her 20's) teacher and seemed to be more into perfection with her classes, although, worked well with Sara when she was four and five. The teacher she has now, is so great with her--she pushes her when she needs to, expects a lot from Sara, integrates her well into the class with the other girls, and Sara always enjoys going to dance.

How did I know she was ready? I really didn't, for sure, but thought I would try it out when she was four, knowing that if it didn't work, I would try again later. Sara has always worked hard at fitting in and for the most part behaving in class settings. Occasionally, she will go off and attempt to do her own thing, but that is where an effective teacher comes in.

Let us know how it goes when you begin Tara in dance.

Marcia

Mom to Sara (DS) and 8 and Lucas 12