RE: Introduction--very long!!

[Guest guest]

Hi Krista,

Welcome, I am hopeful that you will find this group as friendly and as

helpful as the others you are associated with.

When my son, was still a baby - he is now 22, an old lady approached me

while shopping - she told me that she had a brother with DS and of

everything anyone ever shared with us at that time, her words I have never

forgotten and are so accurate - 'there is someone watching over them'.

From me - love, cherish and enjoy every minute of your daughter's young

years as before you know it she will be heading off to school. More

importantly though - treat her the same as you would any other child -

they are very intelligent people and very good at manipulating us to do what

they don't want to.

Keep smiling

Jan, mother of Trent 22yo w/DS from the LandDownUnder

Introduction--very long!!

Our journey to become parents started two long years ago. I would like to

share this very personal journey with you because it will truly give you

some idea of who we are as a family. Our first pregnancy came fast, easy

and naturally. Everything seemed to be going fine until the AFP results

came back abnormal. When we went in for the level 2 ultrasound we were

blind-sided by the diagnosis; severe fetal hydrops with no chance for

survival. We lost our son on Jan. 12, 2005 at 19.5 weeks. We did an

amnio and all the other tests but everything was perfect, there was no

explanation for this diagnosis and we were told that sometimes things just

happen.

As you can imagine losing a baby is one of the worst things life has to

offer. Although we were devastated we really wanted to try again especially

because we found no genetic problems through the testing that had been done.

We then encountered our next life challenge- infertility. I won't go into

the details of that but we eventually ended up doing In Vitro Fertilization

(IVF) which of course was not covered by insurance and we paid for out of

pocket. Ironically we did even more genetic testing as is protocol for all

IVF patients and still nothing was found that put us at any greater risk

than the rest of the population (I was 30 at the time). We had only ONE

surviving embryo our first cycle of IVF and through what is a total miracle

I became pregnant with our daughter! Again the pregnancy was uneventful

until the AFP test. It came back abnormal again and so we began the level 2

u/s yet again, in the same hospital with the same doctors as with our

son---it was very difficult to say the least. After several u/s at several

stages through the pregnancy there was no evidence of defects or fetal

anomalies. We decided not to do an amnio this time since our son had a

perfect karyotype and it was not worth the risk of losing this treasured

pregnancy. The rest of the pregnancy was fine.

On Jan. 12 (yes, the same day as we lost our son 2 years previous) my

water broke and I went into labor. I delivered our beautiful baby girl

Jaidyn on Jan. 13th, that is also the day they told us she most likely had

Down syndrome. Thankfully Jaidyn is a pretty healthy little girl. She does

not have any heart defects and the only issue we are dealing with right now

is her breathing. Jaidyn has a very soft trachea and has a hard time

keeping her oxygen saturation high enough. She is on oxygen at night. The

most challenging thing is that she is not allowed around any children right

now because a simple respiratory infection could be very dangerous for her.

I have been off of work (I am a teacher) but I have to go back on Monday.

My Mom will be with Jaidyn for the month of May and then my husband will

have to take a leave from work to stay home with her. We are hoping she

grows out of this very soon and before she will need surgery. She will also

be starting her early intervention infant program this week.

As you can imagine having gone through the things my husband and I have to

get to this point, gives us what I believe is a different perspective on

having a baby with T21. More than anything we are just glad she is here

with us, that we can hold her, talk to her and give her kisses! That is not

to say we don't have our moments of " why us? " because believe me we have

asked that many times during the last two years!

I have been involved in other over that last two years and

have made some wonderful friends that have been very supportive. I hope

that this group will be similar. At this point I guess my biggest question

to you would be: If there is anything that you would have wanted someone to

tell you at the beginning of this journey, what would that have been? What

is the most valuable advice you can offer us?

Thank you for reading this very long post and getting to know our family a

little better. I hope to get to know all of you too!

Much Love,

Krista

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

Well said Jan. And Welcome Krista.

--------- Introduction--very long!!

Our journey to become parents started two long years ago. I would like to

share this very personal journey with you because it will truly give you

some idea of who we are as a family. Our first pregnancy came fast, easy

and naturally. Everything seemed to be going fine until the AFP results

came back abnormal. When we went in for the level 2 ultrasound we were

blind-sided by the diagnosis; severe fetal hydrops with no chance for

survival. We lost our son on Jan. 12, 2005 at 19.5 weeks. We did an

amnio and all the other tests but everything was perfect, there was no

explanation for this diagnosis and we were told that sometimes things just

happen.

As you can imagine losing a baby is one of the worst things life has to

offer. Although we were devastated we really wanted to try again especially

because we found no genetic problems through the testing that had been done.

We then encountered our next life challenge- infertility. I won't go into

the details of that but we eventually ended up doing In Vitro Fertilization

(IVF) which of course was not covered by insurance and we paid for out of

pocket. Ironically we did even more genetic testing as is protocol for all

IVF patients and still nothing was found that put us at any greater risk

than the rest of the population (I was 30 at the time). We had only ONE

surviving embryo our first cycle of IVF and through what is a total miracle

I became pregnant with our daughter! Again the pregnancy was uneventful

until the AFP test. It came back abnormal again and so we began the level 2

u/s yet again, in the same hospital with the same doctors as with our

son---it was very difficult to say the least. After several u/s at several

stages through the pregnancy there was no evidence of defects or fetal

anomalies. We decided not to do an amnio this time since our son had a

perfect karyotype and it was not worth the risk of losing this treasured

pregnancy. The rest of the pregnancy was fine.

On Jan. 12 (yes, the same day as we lost our son 2 years previous) my

water broke and I went into labor. I delivered our beautiful baby girl

Jaidyn on Jan. 13th, that is also the day they told us she most likely had

Down syndrome. Thankfully Jaidyn is a pretty healthy little girl. She does

not have any heart defects and the only issue we are dealing with right now

is her breathing. Jaidyn has a very soft trachea and has a hard time

keeping her oxygen saturation high enough. She is on oxygen at night. The

most challenging thing is that she is not allowed around any children right

now because a simple respiratory infection could be very dangerous for her.

I have been off of work (I am a teacher) but I have to go back on Monday.

My Mom will be with Jaidyn for the month of May and then my husband will

have to take a leave from work to stay home with her. We are hoping she

grows out of this very soon and before she will need surgery. She will also

be starting her early intervention infant program this week.

As you can imagine having gone through the things my husband and I have to

get to this point, gives us what I believe is a different perspective on

having a baby with T21. More than anything we are just glad she is here

with us, that we can hold her, talk to her and give her kisses! That is not

to say we don't have our moments of " why us? " because believe me we have

asked that many times during the last two years!

I have been involved in other over that last two years and

have made some wonderful friends that have been very supportive. I hope

that this group will be similar. At this point I guess my biggest question

to you would be: If there is anything that you would have wanted someone to

tell you at the beginning of this journey, what would that have been? What

is the most valuable advice you can offer us?

Thank you for reading this very long post and getting to know our family a

little better. I hope to get to know all of you too!

Much Love,

Krista

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.