Tuesday, October 28, 2008

Dear New Parent:

Dear New Parent,

Congratulations on becoming a parent of a child with Down syndrome.

You don't know it yet but you are to be envied. You have a child with something extra, something more and something special. This something extra is extra LOVE. One day you will think back to this moment and know how silly all your fears were, how misplaced your sorrow was and how what you thought would be a burden has become your most precious gift.
Never will an outstretched hand be softer than this child's. Never will a smile be more precious than this child's. Never will an "I love you, mama," be more sincere than this child's.

Today you may wonder, "How am I going to do this?" Or "Why me?" and soon you will hear yourself saying, "I can't wait another minute to hold this child." And "Why me, why was I chosen to receive this amazing child... how did I get so lucky?" One day soon, you will no longer be able to imagine your life without this child... you will count the minutes until you see this child again.

Soon you will read stories about amazing people with Down syndrome. Artists, musicians, athletes, teachers, medical care providers, actors. You will read about people with Down syndrome working, living independently, even marrying. Their stories will inspire you to dream all your dreams for this child.

Soon, you will realize that you are the lucky one...

Sunday, October 26, 2008

What are the odds?

OK--so Mike and I were both 31 when we had the girls.

The odds of us having spontaneous fraternal twins: 1.7% or 1 in 60

Our odds of having a child with DS (without any testing) was: 0.02% or 1:800

The odds of us having one twin with DS? The jury is still out on this one but someone on our multiples list serve estimates it to be, drum roll please....


We do not play the lottery nor do we do pull tabs but I would bet that the "odds" would be in our favor...

Friday, October 24, 2008

Pumpkin Carving

Mike had to work late last night so the kiddo's and I went to Kristin's house for dinner and some good old fashion pumpkin carving! Today there are many kinds of carving kits with all sorts of fun designs and carving tools. Boy, have times changed. Growing up we used to cut out three triangles and couple jig jags for the mouth. No where in the "pumpkin carving" were the kids allowed anywhere near the knife. It's always fun watching the kids "do it themselves."

Austin and Chloe gutting their pumpkins

..and Gavin (Yes, that is Austin acting weird behind him)

..and Taya

Austin carving his pumpkin (he kept giving me funny faces and I warned him I would use one of those pictures and here it is. I am a mom of my word!)

Chloe carving hers (isn't she just too cute?)

..And Taya (this is a very serious side of Taya as you can see)

...& Gavin (he was quite precise and accurate with his "sawing"--good job, Bug A Boo!)

And the finished project (with goofy Maggie sporting her Dora backpack)

Thursday, October 23, 2008

Maggie's first "up do"

Since Maggie and Molly are my first girls, I have absolutely no experience with braiding and pony tails. I tend to just put up a basic pony somewhere on their head to keep their hair out of their face; I keep it simple. OK, it's totally because I have no idea what to do or how to do it. Some days, I just leave their hair down and daycare puts it up. Linda got creative today and I just love it.

Wednesday, October 22, 2008

Tuesday, October 21, 2008

Another word for Molly...

The other day Molly was sitting in the kitchen, behind the highchairs. Thinking she was getting into some sort of mischief, I asked her, "Molly, what are you doing over there?" and she replied, clear as day, "Juice". She had a sippy with juice in it and was drinking it. She's so smart, huh?

Monday, October 20, 2008

Letting Go(Army Wives Style)

I watch the show "Army Wives" on Lifetime TV. The very end of Sunday nights episode showed a man whom lost both of his legs to the war and was talking to other soldiers in the same situation about life now after the explosion; how this life changing event has changed him and his life. It touched me. All of you that are currently experiencing a new diagnosis of a child with DS and those with children with DS, can relate to this story. It's a little blunt (military style) but is sooo good true! I changed some things so it makes sense without changing the meaning..

"On September 25th, 2006, my life changed. Letting go. That is what is what this is mostly about. The first thing that you have to let go of is worrying about stuff that is out of your control. What happened, happened. So take a deep breathe. This is your new reality. Whatever anger and frustration you have, you gotta let go of that too. There's no reverse button on our lives. It's not going to be easy; I know that. Your brain is going to try to steer you off course, like some stubborn horse that doesn't want to stay on the trail. But the really important things; those get clearer in your head. I mean it. No matter what junk you thought you needed before to make your life worthwhile, it goes away. Life gets a lot more basic and a lot richer. In the coming months (years), it's gonna be scary. I won't tell you it isn't. The small changes can be scary, but their still small. It's like you started out as one person and a thing like this changes you and this whole new person starts to form. But until you let go, you'll never realize your full potential. So that's it. All of us here, we were given a special challenge (gift) and what I have to keep believing is that special gifts allow for something special to float to the surface. Something that I may have never known about myself if September 25th hadn't had happened. ."So it's all about letting go of what could've been and only holding on to the things that really matter."

Sunday, October 19, 2008

My favorite DS physical feature...

Are the Brushfield Spots...

Brushfield spots are small white or grayish/brown spots on the periphery of the iris in the human eye due to aggregation of a normal iris element (connective tissue). These spots are normal in children but are also a feature of Down syndrome. They occur in 35-78% of newborn infants with Down syndrome. They are much more likely to occur in Down syndrome children.
Brushfield spots are named after the physician, Thomas Brushfield, who first described them in 1924.

I am not sure if Molly has them or not. Some doctors see them, others do not. Therefore, they are not obvious. I did have a baby with DS in the NICU over the summer that had to most beautiful bright blue eyes with Brushfield spots. It's like he has a "twinkle" in his eyes.

Saturday, October 18, 2008

"The A Maze N Farmyard"

Our family went to a pumpkin patch/petting zoo today with some friends from work. It was a great time. I have such awsome work friends and all of our kids just love each other. Afterwards, we played some Wii; which was a first for the Gjerset's. All in all it was a fun day. Even Molly was a trouper and believe it or not, did not complain once--what a good girl!

Maggie with her boyfriend, Gavin (they are 3 weeks apart in age)

Gavin doing what he loves, being a bouncing boy!

Look Grandpa Jerry!

Gavin and Maggie looking at the ducks

The annual pony ride

All the kids together in the pumpkin patch

Friday, October 17, 2008

Using my knowledge and nursing....

For those of you that do not know me personally, the career that I have chosen for myself is a registered nurse. I work in the Neonatal Intensive Care Unit at a nearby hospital. Let me just tell you that it is the absolute most rewarding job that, in my opinion, one could have. To grow these preemies into big strong newborns is such a wonderful feeling.

When I had the ladies, I had worked in the unit for a little over a year. As I previously posted, at their birth, the NNP (Neonatal Nurse Practitioner) discussed her suspicions of DS. The pediatrician came in to tell me he agreed with the findings and he would order a chromosome study and ECHO in the am. Well, that was honestly the last time ANYONE in that hospital mentioned the words "down syndrome" to me and my family. We were left to research DS online. (you know how much I LOVE it when I hear, "well, the Internet said...."--UGh!) No handouts, no acknowledgement of Molly, nothing, nothing, nothing. I was under the impression that they were not discussing it with me and Mike because I worked there and they were "assuming" I was OK with things and understood everything there was to know about DS. In a way, that is correct but still. "Mum" is NOT the word here people!

When I returned from maternity leave, I found out that the hospital was suppose to give me a folder from the MN DS association and a social worker was suppose to come talk to me about my needs. That did not happen.

Over the past two years, we have had several babies with DS come through the doors. I, of course, took that opportunity to talk to these families as I am "one of them". I also took the time to interview the families about how well we have done as a hospital getting them the needed information (especially the Early Childhood Intervention program) and we did not do as well as I had hoped. Some got the info, some didn't. Then I started interviewing staff as to how they handle the situation and they said, "I don't know what to say".

Anyway, my point to this entry is this: After reading all of these blogs and reading about how sad and angry and disconnected and guilty my fellow moms and dads felt about DS, and how I was (NOT) treated while I was a mom with a brand new baby with DS, I feel VERY strongly that I, me, need to do something.

So, I got the hospitals axillary to order 20 copies of the book, "Gifts: Mothers Reflect on how Down Syndrome Enrich Their Lives" (http://giftsds.segullah.org) Can I just say that this is a wonderful book and brings so much hope to so many new families dealing with the new diagnosis. Anyway, I now have to go the OB clinics MD's, along with the genetics counselor, and let them know to hand out one to each of their patients getting the prenatal diagnosis and then off to the hospital and talk about it with my co-nurses and staff and have them do the same. Also, I am putting myself out there to talk to any family, day or night, about what it is like to have a child with DS.

Oh, I cannot wait to help and give my knowledge....

Thursday, October 16, 2008

An end to another season...

Austin had his last soccer game of the season Tuesday. They won 2-1--yeah! We live in a small town and can you believe that they do NOT have a soccer team at the school? So the team he played on is somewhat of a traveling soccer team. Austin was one of the top scorers for the season. I am so proud of him. We were lucky enough this year to not experience any treacherous weather (Wind, rain, and sleet) We essentially had beautiful weather for every game. That is amazing for fall in Minnesota. Until next season...

Wednesday, October 15, 2008

Tuesday, October 14, 2008

What the future holds.....

Ok, so I am on a roll talking about DS and what it has meant to our family and Miss Molly. I went to sleep last night thinking about her in the far away future.

Where will Molly live once she is done with high school and college??

I got an overwhelming sense of panic for a moment as we have not even started saving for this period of Molly's life. For those of you who are with me on this, what is it that you have set up? Geez, I don't even have a financial advisor.

This is something that people ask me from time to time and for the most part, I don't worry about that but this is what I have come up with. I will assume, for the time being, that she will not want to live with her mom and dad forever (but she, of course, is welcome to do so for as long as she likes). For one, she has three siblings that would be super cool to live with. When Molly was born, Austin said, "I plan on being a bachelor, she can live with me." And for two, she would get bored living here so I think some sort of home would be fun and much more fitting for her. How cool would it be for her to have "roomies" to play games and cards with and watch their favorite Monday night show? I plan on visiting some of these homes in the future, just to see how they run and what not.

Monday, October 13, 2008

The DS Diagnosis...

+I remember when Molly was 2 weeks old, we got a call from the pediatrician stating that her newborn metabolic screen had come back positive for a rare protein disorder. At that point, I knew I was OK with the DS but not with something "medically" wrong with Molly. That came back as a false positive, thank God.

Molly also had a "perfect" heart. Her PDA was only a sliver open and the cardiologists was confident that it would close on it's own. Unfortunately, at three months of age, Molly aspirated her milk into her right lung and had to stay in the hospital for three weeks. It was during that stay that they first heard a heart murmur. To make a very long story short, because of the lung infection, this put pressure on her heart and PDA, which, in turn, opened her PDA wide open. She went to the U of M and had a clip placed via her femoral artery--no scars! That's about it for her health issues. Again, thank God.

I didn't (and don't) hurt for Molly. Molly was going to be fine. I hurt for Maggie. Wow--her twin is "mentally retarded", OMG! She will be teased in school. How cruel the world is. I hurt for all the family that came and went with tears in their eyes. That tore me apart. But not for Molly, she was going to be fine. I was sad for a second that she may never have a husband or children or go to college. But Why? I then realized that being married with children is work and challenging and she is going to live the "simple" life, the one that I long for from time to time. She will go to college, if she desires. She will be married, if she desires. Molly will be whom ever she wants to be. I just don't worry about that stuff.

I love the fact that Miss Molly is sporting an extra chromosome!

Sunday, October 12, 2008

Birthday Fun!

When I was thinking about what to blog about today, I remembered that I had to yet post about M & M's birthday.

It was a fun day. The ladies got a kitchen set and baby strollers, pack -n- plays, and swings, and lots of clothes (mommy's favorite!). They are having a total blast with all of it. Even Molly was putting the babies in the strollers and pushing them around. She got a mat that makes music that will help her to "stomp" and stand up (Great idea grandma!).

I really can't believe that they are TWO already! It seems like yesterday that I had them. (My big gut and butt think they were just born too--LOL!)

Saturday, October 11, 2008

What's in a name??

OK, seriously!! Had I known then what I know now, I might have reconsidered naming my sweet baby girls Maggie and Molly.

Why do you ask? Because they appear to be "DOG" names. I don't know if this is a Minnesota thing, an upper midwest thing or just a DOG thing but there are soooo many dogs around here named Maggie and Molly. I seriously had no idea. Everyday I go outside, I hear someone calling their dog, "here Maggie" "here Molly".

When I named them, a girl at work said to me, "You know those are both big time dog names, don't you?" Ummm, no I don't know...

There are meanings to my children's names and their meanings all seem to fit them pretty well (all are in the Latin term):

Austin:Majestic, dignity
Gavin: White Hawk
Child of light
Molly: The Perfect Child

Friday, October 10, 2008

2 Year Stats!

OK, so I missed posting yesterday. Working 5 out of 6 overnight shifts put me into pure exhaustion!

Maggie and Molly had their 2 year physical yesterday. And the verdict is:

Weight: 26 pounds (40%)
Height: 35.5 inches (85%)
Tall and skinny

Weight: 22 pounds, 11 ounces (50% on the DS chart)
Height: 31 inches (30% on the DS chart)
Perfectly proportioned. If you are interested, her height and weight do not even measure on the "typical" growth chart.

Compared with normal standards for children without Down syndrome, growth rates of children with Down syndrome are reduced by 20% between ages 3 and 36 months, by 5 to 10% in childhood, and by 27% (girls) and 50% (boys) during adolescence. Reduction in lower segment length (pubis to floor) appears to be the major contributor to the decreased growth seen in children with Down syndrome. Average adult heights are 145 cm/4 feet 9 inches in women and 152.5cm/5 feet in men.

This is going to be so fun watching my very "untypical" twins grow (in the literal sense) up together. Maggie will probably be 5'9" and Molly will be 4'9"--too cute!

Wednesday, October 8, 2008

Tuesday, October 7, 2008

More Doctor Fun

Today Maggie and I made a trip to Pediatric Short Stay. There she was given a sedative called Versed. She was too funny! She was acting goofy and laughing and laughing.

  • They put a catheter in and the staff was wonderful! They had a child life specialist there distracting her with bubbles and books. So, between the sedative and the distractions, the cathing went very well.

  • We then proceeded down to Radiology where they attempted to perform a VOIDING cystogram. Yes, the key word here is voiding. They filled her bladder to the max (ouchie!) and waited her her to void. And waited, and waited....

  • Yup, it was pretty much unsuccessful. She was crying so hard and sweating and screaming to be "all done" that she tightened her bladder muscles. Poor baby girl.

  • She starting peeing once for couple of drops but then stopped. He was able to capture a little bit.

  • There was no reflux shown, however, it was hardly a "complete" exam.

After the testing we went to Wal-Mart and I heard a girl say, "Oh my gosh, Honey! Did you see how cute that little girl is? She is the cutest girl I've ever seen." She was, of course, talking about my Maggie. That put a smile on my face. I needed that after three hours of frustration.

Monday, October 6, 2008

Sign Language

Children with Down Syndrome have speech delay, therefore, sign language is an important part of the communication in our house. We have been working hard with Molly on her Sign Language. We have books and a couple of "Baby Signing Time" videos that she just loves. We also sign what we are saying. I.E. "Molly, do you want milk? To Eat?" ect. She signs "eat, more, milk, dada, puppy, night/night, diaper." Her newest one is "cracker". When I ask her if she wants to have snack, she signs "cracker"--it's so stickin' cute! She is also obsessed with her daddy and signs "dada" all day long. I tried to get her to do it on video but you know Molly; she does it when SHE wants to do it. At any rate, I did get her to sign "cracker". .

Sign language has been fun. My older children (including Maggie) sign regularly for Molly and it's a positive thing for them. I don't see it as "work" at all. It all comes naturally

Sunday, October 5, 2008

Praying for Micah

Today, I would like to pay special attention and shoot a little love and prayers through the wires for Molly's friend, Micah over at "A little something Extra For Us." Micah is a sweet little boy born in January whom also has Down Syndrome.

Micah has had some troubles recently and has been in the hospital for that past week. He has a G-tube and has been having "belly" trouble. We love you Micah and we are praying for a speedy recovery!

Saturday, October 4, 2008

On my soap box...

While surfing the web, I stumbled upon this and it was quite upsetting:

"Modern diagnostic tests are driving a "search and destroy mission" to eliminate babies judged to be inferior, disabled, or deformed. Some experts now believe that up to 90 percent of all pregnancies diagnosed as having a likelihood of Down syndrome end in abortion.

Back in 2005, ethicist George Neumayr commented: "Each year in America fewer and fewer disabled infants are born. The reason is eugenic abortion. Doctors and their patients use prenatal technology to screen unborn children for disabilities, then they use that information to abort a high percentage of them. Without much scrutiny or debate, a eugenics designed to weed out the disabled has become commonplace"

Sad and totally and utterly heartbreaking.

Enough said...

Friday, October 3, 2008

The Sticky 21st Chromosome

"In the case of Down Syndrome the nondisjunction happens in chromosome 21 (Trisomy 21). Most of the time, the occurrence of Down syndrome is due to a random event that occurred during formation of the reproductive cells, the ovum or sperm. As far as we know, Down syndrome is not attributable to any behavioral activity of the parents or environmental factors. In 88% of cases, the extra copy of chromosome 21 is derived from the mother. In 8% of the cases, the father provided the extra copy of chromosome 21. In the remaining 2% of the cases, Down syndrome is due to mitotic errors, an error in cell division which occurs after fertilization when the sperm and ovum are joined."

I found this one fact to be quite interesting; that most of the time, it is the egg that has the extra 21st chromosome. Both women and men with Down Syndrome can be fertile, although both sexes have a reduced fertility rate. Where one parent has Down Syndrome, there is a 35% to 50% chance that the child would inherit the syndrome. This chance is even higher where both parents have Down Syndrome. There is also a high chance that pregnancy would end in miscarriage.

This is what Molly's Chromosomes look like:

Thursday, October 2, 2008

A Mothers Intuition

The question is frequently asked, "Did you find out about Molly prenatally or postnatally?". The answer is "yes" to both. Some have heard my story, others have not. Here is the start of my journey with Miss Molly K.

8 weeks pregnant: Remember? I found out I was having twins? The ultrasound tech printed me a picture of each little bean? I looked at Baby B and asked the tech, "Does this baby look like it's developing normally?". I don't know what it was about that picture, but something told me at that moment something just wasn't right.

16 weeks: Went in for another ultrasound. This time the tech (a different one) was only suppose to do a cervical length but was "fishing" around, looking at the babies. She seemed to have a look of concern on her face. She told me they were girls and quickly left the room. As I walked out, I saw her "whispering" to her co-workers and the room hushed as I walked by. I caught onto this but was excited at the thought of TWO girls! Did she see something about Molly then? I can't help but to wonder still today.

20 weeks: Our BIG ultrasound. I was seriously scared out of my mind! I was sweating and my heart was pounding out of my chest. To Mike, he just wanted to confirm that there were two girls in there. I was scared to death!! Did I say that already?
Baby A: Everything looked good. "here's the kidney, heart, brain, face..."
Baby B: He was definitely taking his time. Then it happened...The tech kept measuring and remeasuring the "NUCHAL", the NUCHAL, the NUCHAL! OMG! That's it! My baby has Down Syndrome! (the nuchal fold is the fatty tissue in the back of the neck; if it is thickened, it could be a marker for DS)
Out the the lobby we go; waiting to see Dr S. I am trying not to cry my eyes out. I tell Mike my suspicions. He tells me to calm down and wait for Dr S. to explain the results. Dr S. comes into the room and states, "The GIRLS look good and healthy!" "What about the nuchal fold?" I ask. He tells me that it is just slightly elevated at 5.2mm (normal is below 5mm) and there are not other markers for DS so it really isn't likely. He offered an amnio but I obviously declined.

So, the next 17 weeks I secretly worried. I researched DS online like crazy. Especially how to diagnose prenatally without the amnio. No such luck. All of my future US came back completely normal. No other markers. So why was there this nagging feeling that she had DS? I cannot explain this. I would just have to wait to see her face to verify my feelings. Mike kept asking me why I was doing all the research on the Internet since Dr S assured us that the baby is fine. I didn't want to worry my husband as I really had NO, absolutely NO proof that Baby B did, indeed, have DS. So I let it go.

37 weeks: Maggie came out a happy, SCREAMING girl.
Molly's head was out. She had a VERY short cord and it took the Dr some time to cut her cord and she seemed to be having some difficulties breathing so I wasn't able to hold her on my chest. Right to the NICU staff she went. I got a quick glimpse of her. "Yup! I knew it! She does have Down Syndrome!" I thought.
After a short time, the NNP wrapped Molly up and handed her to me and told me her suspicions of DS. The rest of her words were a blurr. I just wanted to hold her and see her. I was not even the least bit fazed by the diagnosis. Mike, however, was crying and stated, "she doesn't deserve this". I told him that she would be fine and she is perfect.

The fear of the unknown is what scared Mike. He didn't know the first thing about what this meant for him, her, or us.

And so, our journey began on September 25, 2006 at 6:08pm...

Wednesday, October 1, 2008