Re: incoming twins, questions

[Guest guest]

Hello, Heidi!

I have 3 1/2 year old fraternal twins. One with DS and one without.

My pregnancy experience was completely opposite of yours. Molly (my twin w./DS) was way more active but she was also Twin B and was on the top so she had a lot of room to move around and Maggie (my "typical" twin) was Baby A and was head down from about 28 weeks on so she "appeared" to move less.

I work as a NICU nurse and have not found that DS children take any longer in the NICU than their typical counterparts. If the A/V is severe enough, Teddy may require some oxygen (but usually not). DS kids sometimes have troubles eating due to the low muscle tone. This would/will be no different for Teddy if he were born full term vs. premature. The problem will/would exsist regardless of gestsational age at birth.

There is a member of this group that had her twins at 28 weeks so she could tell you more if her typical twin went home before her DS twin. But remember that each child is an individual with it's own stregnths and weaknesses.

I would love to tell you not to worry so much about the "could happens" but I know that is easier said than done.There is nothing you can do about the seperation of the babes during the surgery. You can snuggle and love on Teddy so he doesn't feel that missing link during that time.

The girls are at different levels but play well together. During the first 12-15 months, there really was no difference between the two.

Hope some of this helps! goood luck and keep those babies cookin.!

V.

Family Blog: http://thevelander4.blogspot.com/

Adoption Blog:http://www.lovingonlera.blogspot.com/

To: Multiples-DS Sent: Tue, January 12, 2010 11:13:46 AMSubject: incoming twins, questions

Hi folks! We are still due April 14th (ny w/o and Teddy w DS), but I am on modified bed rest as I have been having a lot of contractions and am dilated a bit. So, plenty of time to think of questions!

1. For those of you who had one twin with and one twin without DS, did you notice much of a difference in their kicking? Teddy (ds) just seems SO much more gentle and less active, and I was wondering if that was typical (my OB assumes so, which does nothing to reassure me).

2. Teddy has a pretty substantial A/V Canal (endocardial cushion) defect and will require open-heart surgery some time in their first year. Do any of you have experience with this? I am less concerned about the surgery (almost 100% positive outcome) than I am with having the boys separated so much both in the NICU and post-surgery. I know twins typically do MUCH better if they are together, especially if they are early. It is all so scary! I don't want hime to hurt, and I don't want ny to suffer because Teddy needs so much extra attention and care.

3. What is the relationship between your twins like? How does it change as they age?

4. Did any of you deliver early? If so, did the twin with Downs have extra problems besides the usual preemie problems?

Thank you so much for all of your help and I appreciate your sharing your knowledge.

Yours,Heidi

Mom to Lilly (3 in Feb) and Ted and on the way!

[Guest guest]

Hello Heidi,Try not to think too much.... I know, hard to do. You have asked some great questions. Remember twins are "term" at 37 weeks.1. Before we knew Davey had DS (and after), our OB called him a slug because his heart rate was always slower than Will's. We didn't know Davey's diagnosis until we were about 6 months pregnant.2. no3. We have kind of taken our relations with the boys on the fly. We have ALWAYS tried to treat the boys the same. We have always had high expectations for Davey. But, now as they get older, we try to base our expectations on what Davey's needs are, not worried about him keeping up with Will. Some things they do together, and some things different. Special Olympics is a big part of our lives. Will also bowls with Davey at Special Olympics. Will does karate and Davey doesn't want to do it.4. We were prepared for the boys to be born early. I was given steroids for lung maturity. BUT, the boys were happy lounging and I was induced at 37 weeks. weighed 6 3 and Davey was 4 14. We had the WHOLE NICU team in the OR "just in case", but they were not needed. Davey had fluid in his pleural cavity in utero and had a needle punched in his chest cavity several times before he was born to remove the fluid. Davey had a higher apgar score than , since Will was born breech. Both apgars were 10 at the 3 minute check.Keep sending those questions and enjoy the peace and quiet for now!wife to mom to Amy 22, Kelsey 19, Davey (DS) 10 next month and 10 next monthHi folks! We are still due April 14th (ny w/o and Teddy w DS), but I am on modified bed rest as I have been having a lot of contractions and am dilated a bit. So, plenty of time to think of questions! 1. For those of you who had one twin with and one twin without DS, did you notice much of a difference in their kicking? Teddy (ds) just seems SO much more gentle and less active, and I was wondering if that was typical (my OB assumes so, which does nothing to reassure me). 2. Teddy has a pretty substantial A/V Canal (endocardial cushion) defect and will require open-heart surgery some time in their first year. Do any of you have experience with this? I am less concerned about the surgery (almost 100% positive outcome) than I am with having the boys separated so much both in the NICU and post-surgery. I know twins typically do MUCH better if they are together, especially if they are early. It is all so scary! I don't want hime to hurt, and I don't want ny to suffer because Teddy needs so much extra attention and care. 3. What is the relationship between your twins like? How does it change as they age? 4. Did any of you deliver early? If so, did the twin with Downs have extra problems besides the usual preemie problems? Thank you so much for all of your help and I appreciate your sharing your knowledge. Yours,HeidiMom to Lilly (3 in Feb) and Ted and on the way!

[Guest guest]

My twin w/o down syndrome kicked a lot more than the one with. They were born at 27 weeks gestation (they are now 13 years old)....the girl (w/o down syndrome) had an apgar score of 7 and the boy (w/ ds) had a score of 1. All I can say is that you never know how things will turn out. 13 years later.... my son (w/ down syndrome) is VERY healthy and does not have any of the medical problems that may be associated with down syndrome (thyroid, heart, ear, eye, obesity, etc) HOWEVER he is extremely low functioning ( & also has the diagnosis' of adhd and autism). My daughter (now hospitalized.... & not having a good day today) has had nothing but medical problems from the beginning. Hang in there...the longer the better (ie they will be that much more healthy)!

( & Ian)Jennah (14)Nicala (13, LD) (13, DS/ADHD/Autism)Jonathon (12, Neurofibromatosis) (11) (4)Subject: incoming twins, questionsTo: Multiples-DS Date: Tuesday, January 12, 2010, 12:13 PM

Hi folks! We are still due April 14th (ny w/o and Teddy w DS), but I am on modified bed rest as I have been having a lot of contractions and am dilated a bit. So, plenty of time to think of questions!

1. For those of you who had one twin with and one twin without DS, did you notice much of a difference in their kicking? Teddy (ds) just seems SO much more gentle and less active, and I was wondering if that was typical (my OB assumes so, which does nothing to reassure me).

2. Teddy has a pretty substantial A/V Canal (endocardial cushion) defect and will require open-heart surgery some time in their first year. Do any of you have experience with this? I am less concerned about the surgery (almost 100% positive outcome) than I am with having the boys separated so much both in the NICU and post-surgery. I know twins typically do MUCH better if they are together, especially if they are early. It is all so scary! I don't want hime to hurt, and I don't want ny to suffer because Teddy needs so much extra attention and care.

3. What is the relationship between your twins like? How does it change as they age?

4. Did any of you deliver early? If so, did the twin with Downs have extra problems besides the usual preemie problems?

Thank you so much for all of your help and I appreciate your sharing your knowledge.

Yours,Heidi

Mom to Lilly (3 in Feb) and Ted and on the way!

[Guest guest]

PS,I breast fed both boys.

Hello Heidi,Try not to think too much....  I know, hard to do.  You have asked some great questions.  Remember twins are " term " at 37 weeks.

1.   Before we knew Davey had DS (and after), our OB called him a slug because his heart rate was always slower than Will's.  We didn't know Davey's diagnosis until we were about 6 months pregnant.

2.  no3.  We have kind of taken our relations with the boys on the fly.  We have ALWAYS tried to treat the boys the same.  We have always had high expectations for Davey.  But, now as they get older, we try to base our     expectations on what Davey's needs are, not worried about him keeping up with Will.  Some things they do together, and some things different.  Special Olympics is a big part of our lives.  Will also bowls with Davey at Special Olympics.  Will does karate and Davey doesn't want to do it.

4.  We were prepared for the boys to be born early.  I was given steroids for lung maturity.  BUT, the boys were happy lounging and I was induced at 37 weeks.   weighed 6 3 and Davey was 4 14.  We had the WHOLE NICU team in the OR " just in case " , but they were not needed.  Davey had fluid in his pleural cavity in utero and had a needle punched in his chest cavity several times before he was born to remove the fluid.  Davey had a higher apgar score than , since Will was born breech.  Both apgars were 10 at the 3 minute check.

Keep sending those questions and enjoy the peace and quiet for now!wife to mom to Amy 22, Kelsey 19, Davey (DS)  10 next month and 10 next month

Hi folks!  We are still due April 14th (ny w/o and Teddy w DS), but I am on modified bed rest as I have been having a lot of contractions and am dilated a bit.  So, plenty of time to think of questions! 

 1.  For those of you who had one twin with and one twin without DS, did you notice much of a difference in their kicking?  Teddy (ds) just seems SO much more gentle and less active, and I was wondering if that was typical (my OB assumes so, which does nothing to reassure me).

 2. Teddy has a pretty substantial A/V Canal (endocardial cushion) defect and will require open-heart surgery some time in their first year.  Do any of you have experience with this?  I am less concerned about the surgery (almost 100% positive outcome) than I am with having the boys separated so much both in the NICU and post-surgery.  I know twins typically do MUCH better if they are together, especially if they are early.  It is all so scary!  I don't want hime to hurt, and I don't want ny to suffer because Teddy needs so much extra attention and care. 

 3. What is the relationship between your twins like?  How does it change as they age?

 4. Did any of you deliver early? If so, did the twin with Downs have extra problems besides the usual preemie problems?

 Thank you so much for all of your help and I appreciate your sharing your knowledge.

 Yours,

HeidiMom to Lilly (3 in Feb) and Ted and on the way! 

-- Love life and be gentle,

[Guest guest]

Hi!! I know what you are going through and it's not fun at all. A little over

10 years ago, I found out that Twin B had Down syndrome and I was just short of

24 weeks gestation. I went to talk to the ob/gyn doctor that afternoon and

found out I was dilated at a 1 (I had no idea I was in labor). For the next 10

weeks of STRICT bedrest, I read everything I could get my hands on (no internet

support then). This resulted in a lot of worries about my future, my twins

future, their older brother's future...

In a nutshell, (with DS) was much more laid back and did not kick near as

much as his twin (). They were born via c-section because Gabe was

breech. They were 6 weeks early. Our expectations were that would have

a lot more problems when he was born because he did have DS, after all. The

doctors pulled out Gabe (no DS) and he wasn't BREATHING. They ran him out of

the room and I was thinking, " great, the 'normal' one might not even make it " .

Two minutes later, the drs pulled out (SCREAMING) at the top of his

lungs! He showed us right then and there that he wasn't going to be the

" stereotype " we had in our heads!! PLUS, weighed more than Gabe. Gabe

weighed a whopping 4 lbs 1 oz and 4 lbs 10 oz!!

Gabe stayed in the hospital for 2 weeks, but ended up staying in for 4

weeks due to feeding issues. He was very sleepy and it took a lot of energy and

coordination to breathe, suck, and swallow. He had prematurity plus the low

muscle tone going against him. I was able to breast feed Gabe, but just

couldn't latch on. So, I ended up pumping milk for for the first 4

months of his life.

No heart surgery here, so no advice from me except that I'm sure all will work

out well.

Relationship between them: Like I said, they are now 10 years old. They were

closer when they were younger. At this point, they fight like typical siblings

but Gabe prefers to play with his 13 year old brother because the gap is so big

between the twins (Gabe is in the talented and gifted program too, thus widening

the gap even more).

My advice to you is to take one day at a time (as best as you can). Keep them

in you as long as possible. Good luck with your pregnancy and I apologize if

this was too long!! )

Mom to Austin (13) and twins Gabe (ADHD, NLD) and (DS)

[Guest guest]

Hey Heidi,

I have b/g twins, who just turned 3. I delivered at 28 weeks gestation. 's diagnosis didn't come until 2 weeks after birth. During my pregnancy she kicked a lot less than her brother. She was breech and he was head down. I had "mother's intuition" that something just wasn't "right" with her, but after seeing 3 different ultrasound techs, they all confirmed she was "ok". Because they were born so premature, they were separated, and both did pretty well in the NICU. actually came home before her brother, and 21 days before her due date. She would have been home even sooner, but had feeding issues. and Caden have a very special relationship. Everything I did from birth to about 12 months was the same for them. Caden started solids and walked sooner than , but other than that we treated them the same. We still do. Obviously, things have changed as they are older. But, they still have a very unique relationship.

Hope this helps! You can check out our blog which includes my pregnancy story: http://shipleytwins.blogspot.com

~ mom to (DS) and Caden 3 yrs old

incoming twins, questions

Hi folks! We are still due April 14th (ny w/o and Teddy w DS), but I am on modified bed rest as I have been having a lot of contractions and am dilated a bit. So, plenty of time to think of questions!

1. For those of you who had one twin with and one twin without DS, did you notice much of a difference in their kicking? Teddy (ds) just seems SO much more gentle and less active, and I was wondering if that was typical (my OB assumes so, which does nothing to reassure me).

2. Teddy has a pretty substantial A/V Canal (endocardial cushion) defect and will require open-heart surgery some time in their first year. Do any of you have experience with this? I am less concerned about the surgery (almost 100% positive outcome) than I am with having the boys separated so much both in the NICU and post-surgery. I know twins typically do MUCH better if they are together, especially if they are early. It is all so scary! I don't want hime to hurt, and I don't want ny to suffer because Teddy needs so much extra attention and care.

3. What is the relationship between your twins like? How does it change as they age?

4. Did any of you deliver early? If so, did the twin with Downs have extra problems besides the usual preemie problems?

Thank you so much for all of your help and I appreciate your sharing your knowledge.

Yours,

Heidi

Mom to Lilly (3 in Feb) and Ted and on the way!

[Guest guest]

Hi Heidi,I don't have a lot of time, but wanted to let you know that I went on (strict) bedrest at 25 weeks and delivered at 36. There was an activity difference, but it was (non DS) that was more mellow than in utero, by quite a lot. I know how that it is just their personalities. She had an ASD and cleft mitral valve -- didn't need surgery until she was 19 months, but she spent her first 5 days in the NICU while was with me in the room. Their relationship of fantastic -- they're close and loving, yet bicker like typical siblings at times (they are 10 now). Tonight hadn't been feeling well, and "snuggled her to sleep" and then went in an hour later and cuddled her again after she was sleeping. When we came home from the hospital (all together at 5 days) I had them share a crib until they were just TOO big to make that work, but even then I had them at L shaped angles to each other until they were almost 2.Neither had any other problems as infants. I'd be happy to talk to you any evening (I'm on west coast time) or on the weekends. I'm in OT school, plus working and single parenting. .so the weekdays are full until later, but I'd love to chat with you. If you're on Facebook, you'll find me under Casey Traver.Happy resting. . .it's the last true rest you'll probably get for a decade!!Casey incoming twins, questions

Hi folks! We are still due April 14th (ny w/o and Teddy w DS), but I am on modified bed rest as I have been having a lot of contractions and am dilated a bit. So, plenty of time to think of questions!

1. For those of you who had one twin with and one twin without DS, did you notice much of a difference in their kicking? Teddy (ds) just seems SO much more gentle and less active, and I was wondering if that was typical (my OB assumes so, which does nothing to reassure me).

2. Teddy has a pretty substantial A/V Canal (endocardial cushion) defect and will require open-heart surgery some time in their first year. Do any of you have experience with this? I am less concerned about the surgery (almost 100% positive outcome) than I am with having the boys separated so much both in the NICU and post-surgery. I know twins typically do MUCH better if they are together, especially if they are early. It is all so scary! I don't want hime to hurt, and I don't want ny to suffer because Teddy needs so much extra attention and care.

3. What is the relationship between your twins like? How does it change as they age?

4. Did any of you deliver early? If so, did the twin with Downs have extra problems besides the usual preemie problems?

Thank you so much for all of your help and I appreciate your sharing your knowledge.

Yours,Heidi

Mom to Lilly (3 in Feb) and Ted and on the way!

[Guest guest]

Hi Heidi,

I hope you get plenty of rest, peace and quiet on bedrest…which

I know is not easy! I was on hospital bed rest for 10 days and it was a

struggle, so I feel for you these next months. My SIL was on bed rest

from 12 weeks til she delivered at 36 weeks…you’ll get through it

but try not to make yourself crazy! I’ve answered the questions

below…

1. For those of you who

had one twin with and one twin without DS, did you notice much of a difference

in their kicking? Teddy (ds) just seems SO much more gentle and less active,

and I was wondering if that was typical (my OB assumes so, which does nothing

to reassure me). My DS (with Ds) did kick

less, but he was head down and VERY low all through the pregnancy. His

sister was very high up with lots of room to move around, and she did. He

was substantially bigger… 6lb7oz to her 4lb15oz, and we would joke that

he stole all the food before she could get any. Turns out, she is still

much smaller, although he is not huge..she has numerous food allergies and my

older typical daughter who also has numerous food allergies was born at 6lbs

and has always been small.

2. Teddy has a pretty

substantial A/V Canal (endocardial cushion) defect and will require open-heart

surgery some time in their first year. Do any of you have experience with

this? I am less concerned about the surgery (almost 100% positive

outcome) than I am with having the boys separated so much both in the NICU and

post-surgery. I know twins typically do MUCH better if they are together,

especially if they are early. It is all so scary! I don't want hime

to hurt, and I don't want ny to suffer because Teddy needs so much extra

attention and care. Colin didn’t have

surgery but he was in the NICU 20 days while his sister went home after 9 days.

After the first week in the NICU, I asked to have them co-bedded because

I also knew that twins do much better if they are together. That worked

really well but only lasted a few days before my DD was sent home. Once

home, my DD would only sleep right up next to me but as soon as her brother

came home she would only sleep right up next to him! They shared a

co-sleeper/bassinet for the first 4-5 months, swaddled and propped right up

against each other. They were good sleepers!

3. What is the relationship

between your twins like? How does it change as they age? My twins just turned two. As others have said, we

have always treated them the same and expected a lot of our DS. My DD is

just starting to notice that her brother gets extra attention (4 EI

visits/week). She is very protective of him, gets things for him, tells

me if he is into something he shouldn’t be…it’s very

cute. They are also just starting to play together these last few months…wrestle,

play in the pretend kitchen, blocks, etc, and lots of hugs and kisses to each

other, which is so cute! I have hopes that they remain close also but I’ve

learned that I can only do so much to encourage it and then leave it to them…my

older two children are exactly two years apart and get along okay but

fight/bicker very often no matter how much I try to get them to be friends!

4. Did any of you deliver

early? If so, did the twin with Downs have extra problems besides the usual

preemie problems? I delivered at 35wks2days, and

both twins had typical preemie feeding and breathing issues. They had to

remain in the NICU/special care nursery for 5 days without any incident before

being able to go home. That happened more quickly for my DD. My DS

was on a feeding tube for about a week, then did ok with the bottle but was

having some breathing issues (brady’s) when he ate. They told me it

was very common for preemies and he would outgrow it, which he did. I

also was breastfeeding, but neither learned to latch while in the hospital so I

was pumping. They both had a big learning curve with bf’ing but I

had breastfed my two older kids and really wanted to make it work with the twins…

My DS did learn (slowly) and eventually mastered it and nursed til he was 19

months, which his speech therapist is always telling me was so beneficial for

him.

Sorry

this is so long! Try to enjoy your bed rest (lots of movies and reading…you

won’t get much chance for either once the twins arrive!).

Take

care,

Eileen

Mom

to Owen (7), Maeve (5), Colin (2-Ds) and (2)

Thank you so much for all of

your help and I appreciate your sharing your knowledge.

Yours,

Heidi

Mom to Lilly (3 in Feb) and Ted

and on the way!

[Guest guest]

see below...

incoming twins, questions

Hi folks! We are still due April 14th (ny w/o and Teddy w DS), but I am on modified bed rest as I have been having a lot of contractions and am dilated a bit. So, plenty of time to think of questions!

1. For those of you who had one twin with and one twin without DS, did you notice much of a difference in their kicking? Teddy (ds) just seems SO much more gentle and less active, and I was wondering if that was typical (my OB assumes so, which does nothing to reassure me).

Zack ds was always less active in the womb, he was also less of a fusser when born

2. Teddy has a pretty substantial A/V Canal (endocardial cushion) defect and will require open-heart surgery some time in their first year. Do any of you have experience with this? I am less concerned about the surgery (almost 100% positive outcome) than I am with having the boys separated so much both in the NICU and post-surgery. I know twins typically do MUCH better if they are together, especially if they are early. It is all so scary! I don't want hime to hurt, and I don't want ny to suffer because Teddy needs so much extra attention and care.

didn't have any of those problems, many here do so they will respond.

3. What is the relationship between your twins like? How does it change as they age?

my triplets are 11.5 now and wonderful buddies, they fight terribly like siblings do. The other 2 adore Zack and would walk through fire for him,

they are fierce defenders of him too. He drives them crazy at times just like siblings do As they grow it is a different relationship as they are so different now

when they were very young they were more similiarly capable.

4. Did any of you deliver early? If so, did the twin with Downs have extra problems besides the usual preemie problems?

we went 36 weeks full term for triplets. Zack had feeding problems he was low tone and would drink an ounce and fall asleep so we

had to wake him to finish. We found preemie nipples (longer) to be great with that. He had a great routine and was easier than the other 2.

Thank you so much for all of your help and I appreciate your sharing your knowledge.

Relax it is going to be fine, we have all been where you are now. The first few weeks are alot of maintence and disorder but it is a great journey!!

Irene

Yours,Heidi

Mom to Lilly (3 in Feb) and Ted and on the way!

[Guest guest]

Hi Heidi!How lucky you are to be connected with this group now....I would have loved all these stories back when the boys were born.  My Ray & Sam(Ds), just turned 4 and the one thing that I've learned from this group and others...our kids with Ds are definitely now " typical " .  My twins were born at 32 weeks and it came out of nowhere...all was fine and no bed rest; however, I question that decision now.  Just went into labor one night and they stopped it with the magnesium to get the steroid shots in.  Because of " baby b's " , now Sam(Ds), heart rate kept going down, the doc decided he didn't want to take any chances, so had an emergency c-seciton.  I was sooo upset about them being early and didn't even know about the Ds until a week later.  Looking back and finding out that Sam has sleep apnea, explaining the lowered heart rate, prematurity could have been avoided.  Just like 's experience, Sam was on top and kicked a WHOLE lot more than Ray.  AND, to this day, Ray still sleeps much better than Sam.  However, both Ray & Sam are very active boys most of the time!

We didn't have any heart surgeries....Sam had a small ASD which is almost completely closed now.  Regarding the seperation though, I understand what you're feeling.  They had to be seperated once born and then Ray was always a step ahead of Sam and they were always getting seperated.  Sam actually seemed to do much better when he was close to his brother, but Ray didn't mind having his own space and still doesn't!    Ray got out of the NICU 2 weeks before Sam because of Sam's apnea spells, but once he got home and was with Ray again, he was better.  It WAS sad to leave Sam at the hospital, but tried to look at it as getting used to one at home at a time.  Once they were both home with us, we had them in the same crib together until about 6 months when they started running into each other.  Other than sleep apnea and acid reflux, Sam has been pretty healthy; however, we did notice that he catches viruses quicker and more than Ray does (he caught chicken pox at 6 months and Ray never got it from him).  Someone once explained to me that kids with Ds catching upper respirtory viruses more is not necessarily that their immune system is worst, but that because of the small airways, things don't get cleaned out as efficiently as others.....sounds logical to me?  We started Sam on Nutrivene about a year ago and more recently through the winter months, more Vitamin D and it seems to help keep viruses down or not as bad.

The boys absolutely love each other like any other siblings and they fight as well!  It's fun to watch them interact with one another and they BOTH learn from each other.  Enjoy your rest and if you're looking for some reading I'd suggest, Road Map to Holland by Graf Groneberg.  Great book for any mother, but her story is much like ours (one twin with & one without).

Take care and keep us posted!Sherry, mom to Ray & Sam(Ds), 4attched couple favorite pics from about 5 months old.....the one  " crib sharing " .....Ray actually rolled over to Sam....it was usually the other way around, so I just had to catch this one!

 

Hi folks!  We are still due April 14th (ny w/o and Teddy w DS), but I am on modified bed rest as I have been having a lot of contractions and am dilated a bit.  So, plenty of time to think of questions! 

 

1.  For those of you who had one twin with and one twin without DS, did you notice much of a difference in their kicking?  Teddy (ds) just seems SO much more gentle and less active, and I was wondering if that was typical (my OB assumes so, which does nothing to reassure me).

 

2. Teddy has a pretty substantial A/V Canal (endocardial cushion) defect and will require open-heart surgery some time in their first year.  Do any of you have experience with this?  I am less concerned about the surgery (almost 100% positive outcome) than I am with having the boys separated so much both in the NICU and post-surgery.  I know twins typically do MUCH better if they are together, especially if they are early.  It is all so scary!  I don't want hime to hurt, and I don't want ny to suffer because Teddy needs so much extra attention and care. 

 

3. What is the relationship between your twins like?  How does it change as they age?

 

4. Did any of you deliver early? If so, did the twin with Downs have extra problems besides the usual preemie problems?

 

Thank you so much for all of your help and I appreciate your sharing your knowledge.

 

Yours,Heidi

Mom to Lilly (3 in Feb) and Ted and on the way! 

2 of 2 Photo(s)

IMG_0125.JPG

[Guest guest]

Hi Heidi -- I have identicals with DS so it's not quite the same, but one kicked more than the other in the womb... turns out the kicker is a more active kid out of the womb too. I was on modified bedrest most of the pregnancy b/c of problems with MY body (not meant to carry twins I guess). They were born at 32 weeks... needed no assistance whatsoever breathing or eating. I breast fed both of them in the NICU (and continued to do so for a number of years), then on Day 4, my kicker came down with a hospital-borne infection that set him up for a NEC infection. came home 2 weeks later at 35 weeks -- no reason to hold him -- and recovered well and came home at at 8 weeks. Both are healthy -- now 4 1/2 years old. Very different from each other. One is still a kicker and one is less so despite their being identical twins. My point, they're two different kids in

there. They'll behave differently, learn differently, achieve differently.

Don't worry so much. It'll all turn out just the way it's supposed to. It'll all be fine. And enjoy the rest... with twins... it'll probably be your last chance to rest for a very long time... LOL

xo maggie

Mom to Olivia '01 and & '05 (IDs w/ DS)

www.walkonthehappyside.blogspot.com

To: Multiples-DS Sent: Tue, January 12, 2010 12:13:46 PMSubject: incoming twins, questions

Hi folks! We are still due April 14th (ny w/o and Teddy w DS), but I am on modified bed rest as I have been having a lot of contractions and am dilated a bit. So, plenty of time to think of questions!

1. For those of you who had one twin with and one twin without DS, did you notice much of a difference in their kicking? Teddy (ds) just seems SO much more gentle and less active, and I was wondering if that was typical (my OB assumes so, which does nothing to reassure me).

2. Teddy has a pretty substantial A/V Canal (endocardial cushion) defect and will require open-heart surgery some time in their first year. Do any of you have experience with this? I am less concerned about the surgery (almost 100% positive outcome) than I am with having the boys separated so much both in the NICU and post-surgery. I know twins typically do MUCH better if they are together, especially if they are early. It is all so scary! I don't want hime to hurt, and I don't want ny to suffer because Teddy needs so much extra attention and care.

3. What is the relationship between your twins like? How does it change as they age?

4. Did any of you deliver early? If so, did the twin with Downs have extra problems besides the usual preemie problems?

Thank you so much for all of your help and I appreciate your sharing your knowledge.

Yours,Heidi

Mom to Lilly (3 in Feb) and Ted and on the way!

[Guest guest]

Hi Heidi,

I can answer some of your questions, but I think everyone has a different expirience. Actually Austin (DS) did more kicking than did. Their relationship when they were very little did not exist, I mean they were not really aware of each other's existence. Afterwards, they went on a "who gets what" phase, fighting for every toy and of course their mother. Now they get along better, they play a lot, does not like to go anywhere without Austin, it is really cute to watch them. If gets angry or cries, Austin usually goes and tries to console him.

My twins were born 2 months early because Austin was not getting enough oxygen, so they had to do the c section early, so actually Austin had less problems than , because his lungs matured because of the prolonged stress inside the womb, but since didn't have any problem, his lungs did not mature, so he had more medical problems. Still they were both 37 days in the NICU.

Hope this helps.

Good luck.

, mother to and Austin (DS) , 2 years.

[Guest guest]

Hi Heidi,

Congratulations! My girls are 5 now and your questions bring back lots of memories!

Adrienne (DS) didn't seem to move as much as Kayley, but Adrienne had more fluid around her than Kayley did, so I thought maybe she had more room to move around in and was pushing Kayley further up into my ribs, etc.

My girls were born at 33 weeks. Adrienne had a duodenal atresia (narrowing of her intestine) and had to have major surgery her 2nd day of life. She did really well. The girls were in two separate rooms next to each other (our NICU has single rooms which was awesome). They eventually were together in a room. They were in the NICU for about 3 weeks, Kayley came home on a Friday and Adrienne on the next Tuesday, so it wasn't too bad. I never had them sleep together. The NICU had a policy that they did not place multiples together in cribs based SIDS prevention. I was sad about that, because I know they probably would have slept better if they were together.

My girls have a unique, but yet typical sibling relationship. We have always tried to treat them the same, as much as possible. I do see some definite qualities in Kayley that I know are a result of her relationship with Adrienne. She is a little caretaker and likes to help Adrienne with everything, even when Adrienne doesn't want her too, which is when they fight. She is encouraging, and models a lot of what I do with Adrienne as far as speech, etc. It was interesting to go to Kayley's school parent teacher conference this year. The two are together in a church preschool. The teacher said that Kayley is often encouraging her peers and complimenting them often. Thought that was pretty good for a 5 year old! Adrienne has learned so much from Kayley, just being able to model what Kayley does. She is quiet and seems to know just when you need that hug.

They miss each other when they are not together, but also enjoy doing things by themselves, such as staying with grandparents or friends. The relationship has evolved over time, I think just like other sibling relationships. They went from not being so much aware of each other, to parallel play, to playing together now. As I am writing this, they are snuggling, and Kayley is "reading" Adrienne a book. They have recently started to go to their room and play games together with the door shut. I love these moments, because when I found out I was having twins, I was so looking forward to everything they would do together, then worried because Adrienne had DS, that they may not really be "twins" but they are! I also enjoy it so much, because my older daughter is 12 and pretty much an only child until the twins ( not by our choice). I enjoy seeing them have each other to play with.

good luck with everything...those first years are so very busy, but did go by fast when I look back.

Cyndy

Madeline (12), Kayley & Adrienne ds (5)

To: Multiples-DS Sent: Tue, January 12, 2010 11:13:46 AMSubject: incoming twins, questions

Hi folks! We are still due April 14th (ny w/o and Teddy w DS), but I am on modified bed rest as I have been having a lot of contractions and am dilated a bit. So, plenty of time to think of questions!

1. For those of you who had one twin with and one twin without DS, did you notice much of a difference in their kicking? Teddy (ds) just seems SO much more gentle and less active, and I was wondering if that was typical (my OB assumes so, which does nothing to reassure me).

2. Teddy has a pretty substantial A/V Canal (endocardial cushion) defect and will require open-heart surgery some time in their first year. Do any of you have experience with this? I am less concerned about the surgery (almost 100% positive outcome) than I am with having the boys separated so much both in the NICU and post-surgery. I know twins typically do MUCH better if they are together, especially if they are early. It is all so scary! I don't want hime to hurt, and I don't want ny to suffer because Teddy needs so much extra attention and care.

3. What is the relationship between your twins like? How does it change as they age?

4. Did any of you deliver early? If so, did the twin with Downs have extra problems besides the usual preemie problems?

Thank you so much for all of your help and I appreciate your sharing your knowledge.

Yours,Heidi

Mom to Lilly (3 in Feb) and Ted and on the way!

[Guest guest]

First of all, I love your girls names! Lovely. And I was really hoping for the behavior and skill modeling thing to work, so I was glad to hear that. You know, I didn't even realize until I read what you said that I had kinda given up on the 'twin bond' experience as well due to the ds. Thank you for proving my expectations wrong. Thank you so much,HeidiSent from my BlackBerry® smartphone, powered by CREDO Mobile.Date: Sat, 30 Jan 2010 10:31:22 -0800 (PST)To: <Multiples-DS >Subject: Re: incoming twins, questions Hi Heidi, Congratulations! My girls are 5 now and your questions bring back lots of memories! Adrienne (DS) didn't seem to move as much as Kayley, but Adrienne had more fluid around her than Kayley did, so I thought maybe she had more room to move around in and was pushing Kayley further up into my ribs, etc. My girls were born at 33 weeks. Adrienne had a duodenal atresia (narrowing of her intestine) and had to have major surgery her 2nd day of life. She did really well. The girls were in two separate rooms next to each other (our NICU has single rooms which was awesome). They eventually were together in a room. They were in the NICU for about 3 weeks, Kayley came home on a Friday and Adrienne on the next Tuesday, so it wasn't too bad. I never had them sleep together. The NICU had a policy that they did not place multiples together in cribs based SIDS prevention. I was sad about that, because I know they probably would have slept better if they were together. My girls have a unique, but yet typical sibling relationship. We have always tried to treat them the same, as much as possible. I do see some definite qualities in Kayley that I know are a result of her relationship with Adrienne. She is a little caretaker and likes to help Adrienne with everything, even when Adrienne doesn't want her too, which is when they fight. She is encouraging, and models a lot of what I do with Adrienne as far as speech, etc. It was interesting to go to Kayley's school parent teacher conference this year. The two are together in a church preschool. The teacher said that Kayley is often encouraging her peers and complimenting them often. Thought that was pretty good for a 5 year old! Adrienne has learned so much from Kayley, just being able to model what Kayley does. She is quiet and seems to know just when you need that hug. They miss each other when they are not together, but also enjoy doing things by themselves, such as staying with grandparents or friends. The relationship has evolved over time, I think just like other sibling relationships. They went from not being so much aware of each other, to parallel play, to playing together now. As I am writing this, they are snuggling, and Kayley is "reading" Adrienne a book. They have recently started to go to their room and play games together with the door shut. I love these moments, because when I found out I was having twins, I was so looking forward to everything they would do together, then worried because Adrienne had DS, that they may not really be "twins" but they are! I also enjoy it so much, because my older daughter is 12 and pretty much an only child until the twins ( not by our choice). I enjoy seeing them have each other to play with. good luck with everything...those first years are so very busy, but did go by fast when I look back. Cyndy Madeline (12), Kayley & Adrienne ds (5)From: Heidi <stonecoast>To: Multiples-DS Sent: Tue, January 12, 2010 11:13:46 AMSubject: incoming twins, questions Hi folks! We are still due April 14th (ny w/o and Teddy w DS), but I am on modified bed rest as I have been having a lot of contractions and am dilated a bit. So, plenty of time to think of questions! 1. For those of you who had one twin with and one twin without DS, did you notice much of a difference in their kicking? Teddy (ds) just seems SO much more gentle and less active, and I was wondering if that was typical (my OB assumes so, which does nothing to reassure me). 2. Teddy has a pretty substantial A/V Canal (endocardial cushion) defect and will require open-heart surgery some time in their first year. Do any of you have experience with this? I am less concerned about the surgery (almost 100% positive outcome) than I am with having the boys separated so much both in the NICU and post-surgery. I know twins typically do MUCH better if they are together, especially if they are early. It is all so scary! I don't want hime to hurt, and I don't want ny to suffer because Teddy needs so much extra attention and care. 3. What is the relationship between your twins like? How does it change as they age? 4. Did any of you deliver early? If so, did the twin with Downs have extra problems besides the usual preemie problems? Thank you so much for all of your help and I appreciate your sharing your knowledge. Yours,HeidiMom to Lilly (3 in Feb) and Ted and on the way!