Fashion Show

Today Ainsley went to a birthday party and it was a "princess fashion show" party. The girls got their hair done, a little make-up and got their nails painted! Then they got to choose one of the stores' pretty dresses (they all brought their "fancy" shoes) and they walked down the run way for the moms to watch. It was very cute but long- from 1 until almost 5 these little 3 and 4 year olds were pampered and had to wait patiently for the others but they did do a cute craft and got snacks through out. To my surprise, the moms were allowed to walk the mall for almost 2 hours while the girls got ready! I never get to shop by myself so my mom and I walked around and enjoyed the afternoon-what a treat! Harper was with daddy and granddaddy at the house. Here's Ainsley with her "up-do" and make-up above. She's looking a bit too grown up!

Here she is attempting to strike a pose.

She's had enough after 3 hours, make-up is starting to run, hair is coming out, she just wants a piece of cake for goodness sake! She asked me while she was eating her cake if it was dark outside- that's her way of saying we've been here for a long time!:)

What's the big idea- update"

This is silly but we were watching "Mickey Mouse Clubhouse" and Donald the Duck said- "What's the big idea?" Ainsley turned to me and said "that's where I got it from." So maybe it wasn't Franklin, it was Donald. But I can still see Franklin saying this too. Anyways, thought it was kind of funny. We need to not watch so much t.v. is what I'm thinking right now...

"What's the big idea?"

This is Ainsley's new saying lately. We have no idea where she has gotten this from. It's just not a saying we say. We asked her where she got it from and she said from herself! We informed her that this saying has been around for quite some time now but she insists that she made it up herself. She even says it in the correct context. Like, Harper will take something from her and she says "Hey, what's the big idea??" Too funny! The more I think about it I think she may have picked it up from the Noggin show "Franklin". The one with the turtle- for those moms of young kids. I can see Franklin saying something like this. It's not a saying that particularly bothers me unless she says it rudely to someone of course. But if I know Ainsley, if I ask her not to say it anymore, she will test me and say it more! When she was around 2 years old she picked up a saying that we did not like at all -"Oh my God!" Again she said it in the correct context- imagine in a little two year old voice saying this in response to something that surprised her- she sounded like a 15 year old! I will admit it was amusing but of course I did not laugh because like I said this is not a saying we approve of! So for months we worked on saying "Oh my goodness" instead and she got better but she loved to test me and whisper it ever so softly. I guess this is where they get the saying- "Kids say the darndest things";0

Cute boy clothes!

Two words- Mini Boden! So cute for boys and girls- although for girls you must check out Chez Ami first!!:):) But as for boys if Chez Ami is not quite your thing or your boys are older check out Mini Boden- they have adorable baby boy clothes as well. Thanks for the other suggestions- I will be checking those out too!!

WELCOME TO HOLLAND

By:Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I know some of you have seen this but I wanted to share it with those that have not. It's such a good way to look at situations when our plans don't go quite the way we thought they would but if we change the way we look at things and accept them for what they are, we may see a whole different world.

I had a positive dr. appt. experience!

It was uneventful, normal and no drama! We listened to the heart beat and Ainsley asked if that noise was Bennett kicking my belly:) I guess she really wouldn't be familiar with the sound of a heart beat at this age. But things looked good and I still really like this doctor. He didn't act any different and I asked him if he's delivered babies with DS and if they had to go to the NICU and he said he has and most went home right away. So that was encouraging to hear. Of course we won't know what will happen until he gets here but it's nice to hear that these babies can go home without any problems.

We went to Target afterwards and of course Ainsley wanted to get some clothes for Bennett! I got a couple of PJ's for him but I'm still having a hard time really getting into boy's clothes! I'm excited to have a little boy but after having two girls and going crazy with all their cute clothes it's just so hard to not want to gravitate towards the baby girl clothes! If anyone has any suggestions of cute boy clothes- web sites, stores, whatever, please let me know!!

There's something about that little blue box...

Yes, there's just something about that little blue Tiffany box that can brighten up a girls' day. Not that I get the little box all the time, which of course I don't expect, but today was a nice day to receive it! Mike has been working hard at his new job and out of town a lot lately so when he got home today he gave me these beautiful earrings. Thanks sweetheart!! Love you!

A Little Anxious

I have a regular check-up tomorrow and I'll admit I'm a little anxious right now. I think since the last time was supposed to be a "regular check-up" and quite frankly turned into the appointment from hell, I'm not looking forward to tomorrow's. I'm hoping and praying that we will hear the heart beat just fine- they should because little Bennett has been kicking up a storm, that I'm measuring fine (another concern I have since my pregnancy with Ainsley- I got huge all of the sudden at 31 weeks or so and that's when her problems started) and that this doctor is positive about all of this. I will have the girls with me (yet another concern-hoping Harper behaves!!) and I liked this doctor when I first met him at 14 weeks but at the time we didn't know anything about the baby. Is he going to be nice about it and educated on Down syndrome? Is he going to respect my decision for keeping the baby or will he act differently? I know I can't control how he acts but how people respond to my baby now and especially after he is born is a big issue for me right now. I'm hoping Ainsley will be able to hear the heartbeat, she is very excited about this so please say a little prayer that everything goes fine tomorrow without any drama!

Bennett Patrick

We have decided to name our little boy, Bennett. Bennett comes from the name Benedict (not particularly a fan of Benedict) but the name means blessed and when I saw that I just knew this had to be his name. Patrick is after Mike's middle name which he shares with his dad Mike Sr. Honestly, I don't think we can change the name because Ainsley already has it in her mind that "Baby Bennett" is in mommy's belly and she even says a prayer every night for "Baby Bennett"- it's so sweet. She says the same thing every night- "God, please don't let Baby Bennett be sick and let him have a good time in mommy's belly, Amen" She's going to be such a good helper!! When we ask Harper where baby Bennett is she pulls up my shirt and kisses my belly and blows on it like we do hers when we are tickling her. It's very cute!

So I thought I'd post a couple of basic facts about DS on here from a website called http://www.downsyn.com/index.php. I was totally unaware before all of this happened that 95% of the time DS is not inherited. I just thought when it happened the mom or the dad must have been carriers without knowing it- this is what I feared when we first found out- I was concerned that I could have possibly passed this on to Ainsley or Harper, something they would need to be worried about if they have children but I was wrong- thankfully. Bennett has Standard Trisomy 21 which is not inherited. Whew! So here is a little educational lesson if you're interested...

Are there different types of Down syndrome?

There are three different types of Down syndrome: Standard Trisomy 21, Translocation, and Mosaicism.
Standard Trisomy 21 is when the extra chromosome 21 comes from either the egg or sperm cell. Between 90% and 95% of all Down syndrome is Standard Trisomy 21. (Bennett has Standard Trisomy 21).
Translocation is caused when a piece of chromosome 21 is located on another chromosome such as chromosome 14. The person with Translocation Trisomy 21 will have 46 chromosomes but will have the genetic material of 47 chromosomes. The person with Translocation Trisomy 21 will exhibit all the same characteristics of a person with Standard Trisomy 21 since they have three copies of chromosome 21. Translocation occurs between 3% and 5% of cases of Down syndrome. (Translocation can sometimes be inherited)
Mosaicism is when a person has a mix of cells, some containing 46 chromosomes and some containing 47 chromosomes. This occurs either because: a) The person received 46 chromosomes at fertilization but somewhere during early cell division the chromosome 21 cell pairs failed to split creating a cell with 47 chromosomes and a cell with 45 chromosomes. The cell with 45 chromosomes can not survive but the cell with 47 chromosomes will continue to divide. All cells that come from this cell will contain 47 chromosomes. b) The person received 47 chromosomes at fertilization but later during cell division the extra chromosome is lost. Mosaicism occurs in 2% to 5% of cases of Down syndrome. A person with Mosaic Down syndrome may exhibit all, some, or none of the characteristics of Down syndrome depending on the percent of cells carrying the extra chromosome and where these cells are located. (Mosaicism can sometimes be inherited)

Is Down syndrome inherited?
The vast majority of cases of Down syndrome are not inherited. Only in cases of Translocation Down syndrome and then in only 1 of 3 cases of this type of Down syndrome is the condition inherited. These inherited cases occur because one of the parents is a carrier. A carrier will have 45 chromosomes instead of 46 but they will have all the genetic material of a person with 46 chromosomes. Remember that in Translocation Down syndrome the extra chromosome 21 material is located on a different chromosome. A carrier will have the extra material but will have only one chromosome 21. The carrier will not exhibit any of the symptoms of Down syndrome because they have the correct amount of genetic material. A carrier will have an increased chance of having a child with Down syndrome. If the carrier is the mother, the chances are approximately one in five of having a child with Translocation Down syndrome. If the carrier is the father the odds are reduced to between one in twenty to fifty. In cases where the carrier has no unattached chromosome 21, all the carriers children will have Down syndrome. In all cases of Down syndrome but especially in cases of Translocation Down syndrome, it is important that the parents have genetic counseling to determine their risk.

Did I cause my child to have Down syndrome?
Simple answer: NO! There is nothing you can do to prevent Down syndrome and nothing you can do to change your odds of having a child with Down syndrome. Down syndrome occurs in all races, in all socio-economic conditions, and in all countries. No relationship between diet or illness and Down syndrome has ever been found. The only established relationship is with maternal age. A woman is more likely to have a child with Down syndrome as she grows older with a sharp rise in risk at 35-40 years of age. However, 80% of all children with Down syndrome are born to mothers under 35. -This was also surprising to me! It's simply because more women under 35 are having babies.

I met the two children with DS today!

So we went to Barnes and Noble today with Renee and Ellie again and there they were, the two children that I spotted back in November before I found out about our baby. They have Down syndrome (DS) and by the way in case you were wondering- it is proper to write it like Down syndrome- not sure why- I read it somewhere. Anyways, once again the little boy was clapping when it was time to clap, roaring like a lion when it was time to roar and spinning around when it was time to spin. I think I and most people that don't know, totally underestimate these children with DS. I introduced myself to their moms when it was over and they answered so many questions and seemed very happy despite some of the challenges they have been through.

One thing I was really surprised about was how small they really were. They were both the size of Harper (20 months) and would soon be 3! So again, Ainsley has prepared us in that way with another pint size baby but the great thing is that they don't grow out of their clothes as fast! The little girl had some medical issues in the past that made me worry a little but I'm really just trying to take this day by day. I can't worry about something that isn't here yet so I'm blocking any negative thoughts out!

Special thanks to my friend Jen Berry, who I recently met, for getting the contact info. from these moms last week, which gave me the courage to go up to them today since we had already emailed eachother. Thanks Jen! So glad I know you!

Where to start?

Well I thought I'd start this blog to keep our family and friends informed on what is going on in our lives. We recently received some rather shocking information about our baby that is due in May and I thought I'd share my story as we go along on this unexpected journey.

I will start from our first daughter's birth- sweet Ainsley- She was born at 34 weeks due to a rare condition called Congenital Chylo-Thorax which caused Fetal Hydrops. The whole thing was dramatic- at 33 weeks I thought I was having some labor symptoms but the doctor measured me and I was measuring 40 weeks instead of 33 and my blood pressure was sky high. I was rushed down stairs to a specialist at Rex Hospital in Raleigh, NC only to be told to call my husband immediately because the baby and I were in great danger. It still brings me to tears just thinking how scared I was. Everything had gone perfectly up to this point- what could be wrong? Mike arrived and we rushed over to another specialist at UNC Women's Hospital in Chapel Hill and for 3 days they ran tests, did ultrasounds, had meetings over what to do with our baby. I will never forget when the Chaplin came to our room- all I could think was this was the end, he only comes when the end is near. He prayed for us, for our unborn daughter and for us to have peace. On December 20th, 2004 the doctors decided that they could help our little girl on the outside as she was not doing good inside of me. We were rushed down to the O.R. and Ainsley Elizabeth was born. They told me she probably would not be crying and that they would not be able to bring her over to me. They had a whole team working to resuscitate her. Ainsley was put on a ventilator and the first week of her life was touch and go. She was such a fighter and the doctors even called her a "miracle baby". To make a long story short she was in the NICU for 5 weeks and the problems didn't end once she got home-feeding issues, slow growth but for the most part she was healthy and is now a perfectly, healthy 4 year old. I guess I'm telling you this story because I thought that would be our biggest baby drama that God would allow, I mean how much more can parents handle is what I was thinking. No doubt God was there every step of the way and although we don't know why it happened, it doesn't matter, it all made us stronger. Here's a picture right after she was born. She was full of fluid because of the hole in her lymphatic system which made it impossible for her to regulate all of the amniotic fluid that circulates through out the womb. Eventually she got rid of the fluid just by peeing and lasix- no surgery or draining was required!




Fast forward to my second pregnancy. Mike and I were given a 1% chance that the same thing could happen again but the geneticist really felt like this was something that just happened and had nothing to do with us. Listening to all my friends and their wonderful birth stories and how naturally, their babies came home within 2 days, ate like champs, grew super fast, I was determined to have a normal pregnancy, a normal delivery and a normal experience with a newborn if I had anything to do with it. On May 2, 2007 our Harper Elise was born at 39 weeks via an elective c-section. I wanted everything planned and man was it perfect. No problems during the pregnancy, ultrasounds looked great, delivery went perfect and Harper ate like a champ! I remember leaving the hospital in the wheel chair with my little girl, so proud because I didn't get to do that with Ainsley- I had to leave Ainsley at the hospital- so this was the moment I was waiting for. Of course I sat there for quite a while because Mike did not have the car seat in correctly and the car seat guy had to show him how to "properly" install a car seat! You'd think we were first time parents:) Here's Harper on her birthday!




Well, after Harper I went back and forth about wanting another one. For a while I said two is enough, they are both healthy and I really don't enjoy pregnancy and Mike was happy with two. But then I changed, when Harper started crawling and then walking I thought is this really the last time we're going to experience these huge milestones? I just couldn't imagine this was it. So after several months of convincing Mike to have another, he gave in and we got pregnant very quickly. However, I remember mentioning to a friend of mine when I first found out that my worst fear would be that if this baby had something wrong with him/her and I was the one that wanted this, not Mike.

We moved for Mike's new job in November when I was 11 weeks (as many of you know, we always move when I'm pregnant) and everything was going great. In fact I thought this has been the easiest pregnancy, I mean I didn't even feel pregnant, it was great. We started to make friends and got adjusted pretty quickly.

Now, I'm going to share some little tid bits of info. that I feel almost foreshadow what was to come. Before Thanksgiving I went to Barnes and Noble for reading time with the girls and my friend Renee and her daughter. There, I saw 2 little toddlers that had Down syndrome and I was amazed by them, they were participating and paying attention way more than the other kids and I even mentioned it to Renee. I'm not sure why they got my attention but I just thought wow- those children are amazing!

Fast forward to December 21, 2008, it's Sunday night and the next morning I had a regular 4 week appointment with my OB. I started thinking- I wonder why I haven't heard about my prenatal screening tests-it's been a week- I wonder if this practice calls or mails something or if they will just tell me everything looks normal tomorrow. Hmm, I thought, so I got on the internet (very bad place to go when you're worried about something by the way) but I went on the babycenter website, a place that I've gone to for years to find baby names or information about taking care of babies and such and I went straight to the board labeled Down syndrome Pregnancy. So I started lurking for a bit and then I thought- Adrienne-stop, you are fine!

The next morning Mike was off from work so he dropped me off and took the girls to run some errands, there was no need for us all to go- it was just a routine appointment. As soon as I got in an exam room I asked the nurse if they got my screening results back- she looked in my chart and said yes but they just needed to interpret them. I thought okay- so that's why they didn't call, they just got them in, no biggie. So I waited and waited, she came in and apologized and said it was just taking a while to interpret them but that it should be any time. Hmm, I thought, that's not good and I seriously started envisioning a little girl (I was convinced we were having a girl for some reason) all dressed up like Ainsley and Harper in some cute outfit but there was one thing wrong- she had Down syndrome. I couldn't get it out of my head. How could this be? Finally the doctor walked in and instead of saying everything looks great she made small talk, asked about my previous pregnancies and such, all the while I'm thinking get to it lady- tell me, what do my results say? She finally said "Now, I'd like to talk about your results" right then I knew it- my baby had Down syndrome. I could not believe it, I had this feeling all along, my worst fear has come true and now I have to tell Mike. Well, the results were not final, she explained it was just a screening but that they wanted me to go talk to a genetic counselor and have a level II ultrasound at the hospital. (Warning, these feelings I share next were real and honest and I realize they seem harsh, but until you are in this situation you don't know how you will feel) I then asked her what were my odds-(I was reading the night before about women who got results back that said 1 in 160 or 1 in 220) she said she really didn't like telling her patients because it is just a screening and it may be nothing but mine were 1 in 10 that this baby had Down syndrome. When I heard that, it was all over, 1 in 10?! And these women were worried about 1 in 160? Are you kidding me? I honestly did not want this baby and this is me just being honest- at that point I thought maybe I'll have a miscarriage and we won't have to deal with this. I left the office calm but as soon as I saw Mike I broke down. I felt that it was all my fault, I wanted to get pregnant, not him and now this baby is not perfect, or normal, this baby has Down syndrome.

The next day we went to do the level II ultrasound where they found a heart defect and shorter limbs for gestational age (both are markers for DS). Right then and there I said I wanted to know for sure- I wanted the amnio- no matter what the risk. The procedure went fine and on December 26th, 2008 I got the call- it was confirmed our baby had Down syndrome and that it was a boy. This was the day that my life changed forever. It would never be the same. Our perfect little life that we had was gone. Why was God letting this happen to us again? Ainsley's birth was traumatic enough but now this? Why God, why? I can't do this, I thought, I don't want to do this, quite honestly. Mike didn't either. Who does? So we cried that day, we were angry at God, I was angry at myself and then I was just numb. I still could not believe in a million years this would be happening to me but yet I somehow knew.

So a couple days went by and the genetic counselor called to check on me and then she said I had options- I could keep the baby, I could terminate or I could put the baby up for adoption. Well, no matter what my crazy emotions were when I was thinking maybe the baby won't make it and it would be for the better, I knew that I would not terminate. No way. This is the baby we created and we were going to keep it. I felt terrible for wanting something to happen and that I could not even feel excited that we were going to have a little boy. I hadn't talked to God in a couple of days because quite frankly I felt betrayed. How silly of me, I think now. I now know that God didn't make our baby have Down syndrome, he wasn't punishing us with all of this. Things like this just happen, they happen to good people and not so good people, to Christians, to non-Christians, things like this just happen. But just as with Ainsley, God has a plan and I just know if I let Him take over and stop trying so hard to be a control freak it's going to be okay. It was with Ainsley- as soon as I gave in because I couldn't do it anymore- I couldn't watch my little baby girl hooked up to all those machines not knowing if she would live- God stepped in. I just gave it all to Him. I remember that happened on New Year's Eve, 2004 and the next day Ainsley amazingly came off of the ventilator. So I think in a way Ainsley's birth has prepared me and hopefully Mike for what is to come. We are not in control- as much as I want to be, I'm not. I truly believe though if we just let go of that control God will show us the way.

So this is our story thus far. I know it's long but I felt I needed to start with Ainsley as she was really the beginning of our unexpected journey- parenthood, I guess, in a nutshell. And though I feel like our lives have changed forever with this diagnosis I just know in my heart it will be for the better, no matter what happens. I'll hope you'll check in from time to time to see how things are going! I promise, other posts won't be this long:)