Little Snippets Of Life With Bennett...

Well it's been a while since I posted some videos of Mr. Bennett (almost 9 months!) so these are very short- all together they are 2 minutes. Just little snippets of life with Bennett...

In this one Bennett is attempting "So Big", with one arm ,(he's getting better at it every day!)...

In this one he's just a slobbery, talking, happy little boy...

And in this one he's sitting up with his sister who got a hold of him and put a silly hat on him but then he gets a little bit upset, yes, Bennett does get mad {occasionally}:)...

Just can't get enough of him!

Coming Up On Six Months...

Almost six months ago my little baby had open heart surgery. I used to worry some, about how his scar would look as he got older. And for a while it was looking kind of puffy and not so great but now as he approaches his six month mark to having a repaired heart, a heart that had to be repaired in order for him to live basically...

I don't think it looks so bad.

It's his battle wound. Such a strong little boy. And we are forever thankful for this repaired heart.

Baby Bennett's First Christmas!

Happy New Year!! Hope everyone had a great holiday-we definitely did, so much better than last year!! Last year we had so many unknowns to worry about but this year that big unknown (Bennett) was just a happy, cuddly baby for us to hold! We're so thankful for him!!

So this Christmas was a special one for Bennett-his first, of course! Here's some pictures of him on his very first Christmas as well as throughout the holiday and some special people in his life:)...

Opening his gifts

Ainsley helping him open gifts

Getting ready for his morning bottle:)



Just some cuteness in these next few pics



His sisters love him so much!

Bennett with his sisters and cousins

Uncle Seth and Aunt Alexa


My parents with all their grandchildren

Micah (my sister's son) with Bennett

Ty (my sister's other son) with Ainsley

Mike with Harper waiting to take a ride on granddaddy's trailer.


Us-Christmas 2009!

Happy 2010!

Everything Changed...

One year ago today. This was not the day we got the official results from the amniocentesis, that was December 26th, 2008, which made for a rather depressing Christmas holiday. December 22, 2008 was the day that my doctor told me that my afp testing results came back as a 1 in 10 chance for Down syndrome and that's when I knew. This was the day that my "perfect pregnancy" came to a screeching halt.

When the genetic counselor called a few days later on December 26th, I'll never forget that moment: my cell phone rang and I had to step out into the garage because the girls were happily (although loudly) playing with their new toys. I held my breath, just praying that she would say "everything came back normal" even though in my heart I knew. But she didn't. Instead she said "I'm sorry, but the amniocentesis came back positive for Trisomy 21". I can barely type this without sobbing. I don't know why it is still so hard to think back to that moment. I think I'm sad for the girl that answered that call. But I don't feel like the same girl today.

After some very sad weeks, the saddest I have ever been, I decided to send out an email to let all of our family (that didn't know) and friends know about our son. I'm a realist. And while I was very sad, I knew I had to snap out of it and try to move on. No matter how hard I cried it still was not going to change the diagnosis so this email was my way I saying: I've accepted it.

Here's what I sent:

January 6, 2008

Happy New Year to all!! We hope everyone has had a wonderful holiday this year as we have with our girls! Can’t believe it’s January, 2009! This should be an exciting year for Mike and I as we are planning on welcoming our third child into the world, a boy, in May. Many of you are aware of the recent diagnosis we have received for this baby- Down syndrome. For some of you this may be the first time you are finding out about this. Of course this came as a shock to us and was very difficult to even comprehend. We have had some time to accept this diagnosis and truly believe God will turn this into good. Mike and I want our family and friends to be aware of this now so when our baby does arrive there are no surprises or sadness just joy that a new life has entered the world. We know that many of you may not know what to say to us or how to act around us and we want you to all know that we are coming to peace with this and do not want you to feel sorry for us or awkward around us. All we ask is for your love and support just as you would if he did not have Down syndrome. The last thing we would want is for anyone to stop calling or asking us how things are going in fear that we may break down or not want to talk about it. We want you to be interested in how the pregnancy is going and once he arrives how he is doing. We know there will be challenges but we feel God sometimes leads us down different paths in life, although some paths are not where we planned or where we want to go, we know He will not lead us down this path alone. Mike and I are prepared to love and care for this baby just as we do our girls and ask that you do the same. I strongly feel after doing some research and talking to parents that have children with Down syndrome that it is a life worth living not something to throw away. And we will do everything in our power to help this child reach his full potential in life and know that we will learn so much from it.

In February we will be seeing a pediatric cardiologist to access the baby’s heart defect that was detected on an ultrasound. Heart defects in babies with Down syndrome are very common and can almost always be corrected with surgery- some not requiring any surgery at all. Of course we are hoping and praying to hear some good news at this appointment. We will not know the severity of his condition (Down syndrome) until he grows. Just as with any child, we will not know his capabilities or when he will reach milestones, be able to talk, read or write until he develops. We do know that the more early intervention the child receives the higher the potential and success. Again we will do everything we can to help our son succeed in life. Please continue to keep us in your prayers as raising three children without disabilities would be hard enough! We will keep you posted as we find out more. 2009 is sure to be full of surprises for us and I just know in my heart we are going to be pleasantly surprised. Please stay in touch!

Love,
Mike and Adrienne


When I hit the send button I had no idea what kind of response I would get. I had no idea that I would get an overwhelming amount of love and support from so many people. Sending that email was my first step to acceptance of the diagnosis and it was also my first view of how people would accept my son. I'm so glad I sent that. And I'm so thankful for the family and friends we have. And wow, Mike and I have been pleasantly surprised, beyond belief.

You've heard the saying "If I only knew then what I know now" - for me, that saying couldn't be more true. If I only knew then what I know now, I wouldn't have wasted so many tears, I wouldn't have spent sleepless nights worrying, I wouldn't have spent days and weeks being angry, I wouldn't have spent days and weeks being jealous. Man, If I only knew then what I know now....but if I did know then what I know now I don't think I would have become the person I am today. I went through a learning process about myself and sometimes I don't think God wants us to know it all because otherwise we wouldn't have a chance to grow.

No, I'll never forget the feeling I had when I rode down the elevator to see Mike after that appointment with the doctor on December 22, 2008. Oh, it was awful. When I saw him waiting he was sitting in the car with the girls just smiling and laughing (he didn't know yet) and then he noticed me through the window, still smiling but he could see I was not. There I was feeling like the world was crashing in around me. His smile went away when he saw my face. To think back at how very sad I was and then to look at Bennett now, it almost seems foolish. But I know it wasn't and that it was a learning process.

It almost makes Bennett's existence that much sweeter.

The Apple Of My Eye is 6 Months Old!!

Umm yes, I do think I could just eat him right up!

No way, 6 months, really?? The more kids you have the faster it goes by I think!

Well Bennett is just under 16 pounds now and I'm thinking 26-27 inches (I have a scale but I don't measure his length-lol). That puts him in the 75% for the Down syndrome charts for both height and weight and in the 25% for weight for the typical charts and 50% for height.

He is currently getting occupational therapy twice a week and the request for physical therapy was made so hopefully soon he will be getting OT once a week and PT once a week. To my surprise he will also be receiving speech therapy!! When I called and asked for a PT, I also mentioned that I would like him evaluated for speech, knowing I would get some resistance, which I did: "We don't usually offer speech at this young age", well I got a little feisty (in a nice way) with the woman and next thing I knew a speech therapist was calling me! She also has a degree in teaching and is trained in developmental therapy as well so we will be working on things that Bennett should be doing cognitively as well as socially for a 6 month old and so on as he grows. Once she meets Bennett we'll determine how often she'll come out to work on prespeech, eating and developmental therapies.

I ordered Baby Signing Times for Bennett and I'm excited to start sign language with him! I think the girls will really like it as well. We've been working on "How big is Bennett?" and I swear he lifts his little arms sometimes when I don't do it for him- so cute! He also enjoys doing patty-cake and wheels on the bus, really he's just a joy to be around.

So at 6 months Bennett can/is:

• roll both ways and is starting to continue to roll to move across the room
• starting to push up on his arms to get his tummy off the floor
• shake toys and rattles rather ferociously-quite funny to watch him shake his little car seat toy-he makes this serious face and really gets into it
• working on sitting independently- this could take some time though
• hold a crawling position with knees on floor, tummy off the floor and arms straight momentarily-this is just so cute!
• working on putting weight on his legs-he loves doing this and just giggles when he's bounced up and down
• working on eating solids-he seems to like it for the most part
• working on holding his bottle
  

Bennett will be getting a hearing test this month (recommended for babies with DS at 6 months and 1 year) as well as an eye exam. Both the eyes and ears can be issues with kids that have DS so we need to stay on top of it. He will also be getting his thyroid tested-again another issue that can arise... I know, it's a lot but you know, it's not that bad and I'll do anything for this little boy. I was prepared for some of the extra things that come along with having a child with Down syndrome so I'll just go with the flow. I just can't believe he had open heart surgery over 3 months ago! Oh I'm just so thankful he's doing so well right now.

Bennett you are our little cuddly bub and we love you soooo much and yes, you are the apple of mommy's eye!

Happy 6 months!!!

Giving Thanks For The Unexpected...

As Thanksgiving approaches, naturally I've been thinking about what I am thankful for. Of course I am thankful for good health for me and my family and good health for my extended family. I am thankful for Mike's job, thankful for the opportunities we've had with his job. I'm thankful for Mike and for God putting him in my life-honestly, I don't think anyone else could put up with me-Ha! And I'm thankful for my sweet, sweet children. As I sit here and think about each of my children I can honestly say I am thankful for every inch of their little bodies, inside and out. But when it comes to Bennett, I ask myself am I thankful for that extra chromosome?

Let me just tell you as a mom, as a parent, this is very hard to answer, at least for me. Let me share with you what that extra chromosome has given me and then maybe I'll be able to answer my own question...

Bennett having Down syndrome has allowed me to "meet" so many wonderful people that I otherwise would have never "known".

I have received countless emails from strangers that have told me their stories and how Bennett's story has helped them cope and how it has inspired them.

I have received the sweetest messages from good friends and others that I haven't heard from in years, that allowed me to see what type of person they really are and otherwise I don't think I would've known their hearts like I feel I do today.

I have seen a love from family members that can never be broken, not ever. A love so deep, so genuine and so pure.

For me and for my life, Bennett brings out the best in people. That's the bottom line. Basically he has allowed me to see into the hearts of people, really see their hearts and how they feel and to me there is nothing sweeter. But if he didn't have Down syndrome I honestly don't think I would even have this blog because I didn't even know what a blog was until I started looking at them right after we found out. I would have never "met" these wonderful people or heard from friends that I haven't heard from in years.

And if Bennett didn't have Down syndrome of course the love that people have would always exist but would I see it in my life, I don't think so. I wouldn't be brought to tears by the emails and messages I've received because there would be no reason for people to share their hearts with me. I wouldn't be brought to tears by all the kindness we've received from friends and family. Don't get me wrong, I'm not saying I think Bennett is more special than any other baby. All babies are special and are precious gifts from God. I'm just saying that the things I am thankful for and the things that have made a difference in my life are in a sense because of him having Down syndrome. And Bennett is not just Down syndrome. It is not what defines him as a person, it is a part of him and if I love every inch of his body, inside and out then I have to love the part that is Down syndrome.

So as hard as this is to say or write for me, and as crazy as it may sound, almost a year later after being thrown, dragged, shoved into a world that I did not want to be a part of (kicking and screaming mind you), the world of Down syndrome that is, I can say I am thankful for every part of Bennett and for Down syndrome and the things it it has already shown me. There, I wrote it. Man that was hard to write, I'm not going to lie. But it is what God intended for Bennett and I am thankful for everything God has given me so Down syndrome must be included. You see,

"Every good and perfect gift is from above" James 1:17

And Bennett is good and Bennett is perfect.

It's so strange because it's never been a question whether or not I'm thankful for Bennett. But I've never been able to say I am thankful for him having Down syndrome. That's sounds crazy doesn't it? Why would I be thankful for something that causes delays in children and that sometimes causes health issues in children and that may one day cause him to be made fun of? Why on earth would I be thankful for that? The fact is that while the world of Down syndrome can bring on many scary things or many hurtful things, the good things from it far out weigh the bad and I truly believe they always will. I cannot change the fact that he has Down syndrome, would I if I could? Uhh- that's still so hard to answer because I know it would be like changing who Bennett is and I'm not sure I'd want to do that. And since I can't, why even pretend that I could? What can change is how society views my sweet boy so I will focus on that.

Through all of this, I am a changed person because of Down syndrome. I will never be the same but I am thankful for that.

Bennett is truly like a little piece of heaven for me to hold. I know that sounds like a cliche but I don't know, there's just something about him and that extra 21st chromosome. That extra chromosome that was so unexpected but that has given me many things to be thankful for.

First "Real" Haircut and My Roller!

Ha! I bet you thought it was Bennett's first haircut-nope, already taken care of that myself-just a little snip,snip here and there {don't worry, I saved it}. It's the girls that needed their hair cut and this time it was done by a professional, not mommy! I've been cutting Ainsley's hair into this little wedge cut for the last 2 years that was really cute but I'm kinda over it for her so I just needed someone to add layers.

First up was Harper:

She did really good, she sat somewhat still and watched Pinocchio.

Not much change here, she's still got that baby fine hair, hard to tell what her hair is going to be like.

Ainsley did good too, she was used to me cutting it all the time!

So while I'm trying to grow it out, it is a little shorter but it needed to be trimmed and layered so now we can start fresh and really let it grow.


This was her idea of "fixing it" after we got home-lol.

This girl has got some curls!

So Bennett decided he was feeling a little better and thought it was time to roll from his back to his belly today! He's been working on this for a while now but would always get stuck on the bottom arm...until today-take a look! (Excuse the shriek and the raspy voice-still recovering from this flu thing)

So proud of him!

Bennett Has The Flu~Prayers Please!

Type A Influenza. And we all know what that is. Which pretty much means my whole family had H1N1 and we didn't even know it. How can that be? First off I'm asking you to please pray that Bennett recovers just as we have so far, with no complications. I just gave him his first dose of Tamiflu and he is sleeping peacefully.

These were my family's symptoms: (remember-we never got proof of Ainsley testing positive because the swab was "lost" or not good enough, so we don't know for sure that she had it but since we all got what she had and now Bennett tested positive, it's pretty much a given)

Ainsley: (her symptoms were not bad at all)

• woke up coughing-went back to bed
• woke up later with a low fever (however-and this was my down fall-I used an ear thermometer and her temp was never above 101 but I think ear temps can be off a little so hers could have been higher)
• woke up saying her tummy hurt but never said it again
• Next day fever was gone but would return to a low (ear reading though) temp around 100 throughout the day.
• still coughing some sneezing
• decreased appetite some
• also tested positive for strep throat and treated for that

Harper: (she was much worse)

• Temp got up to 102 once (ear again though-I am so mad at myself for thinking they were fine because they had lower temps!!)
• watery eyes
• cough
• sneezing
• didn't eat as much but still drank a lot and ate some
• fever lasted on and off for 4 days but ear temp consistently said 99 so I thought it was a very low fever.
• She was treated for strep as well.

Me:

• Same as Harper but I had chills and then I would be sweaty but every time I checked my temp (ear) it was 97-98. So I thought I didn't have a fever.
• I do have asthma and I have started to wheeze some which I do when I have a cough like this.

Mike:

• Same as Harper and I

None of us were on Tamiflu because we didn't know we had it. Everyone is on the mend -no fevers for a few days but now my sweet Bennett has it and I just can't believe it. His symptoms started late yesterday when I noticed a little congestion and then today it was all of the sudden a fever of 100 (rectally) and the congestion was worse. So I took him in and I was able to see the doctor I liked. Turns out that my insurance allows for a lab to come directly to the office to pick up the swab and test it and will have results within hours. The doctor I saw today had no idea what happened last week. She called me at 12:30 am to tell me that Bennett tested positive and that she had just received the call. I was very thankful for her to do that. She said she will be calling to check on him daily and wants to know how his breathing sounds. She sounded exhausted. They are getting slammed with swine flu.

So learn a lesson from me. The symptoms don't have to be that bad for it to be swine. I'm just so glad I took Bennett in at the first sign of a fever and we got the results back quick this time. And I'm so thankful that Ainsley and the rest of us dealt with it okay. I'm hoping my asthma is not an issue.

I have no idea what Halloween is going to be like now. I'm just praying the girls can have their fun now that they are feeling better and Bennett will continue to eat and get the rest he needs.

Sorry if this post is all scrambled, I just wanted to get it out there and ask for your prayers. Thank you!

No More Scooping and "We'll see you in a year"...

Yes, that's what I was told after Bennett's echocardiogram today!! His cardiologist said the leaking in his mitral valve was now mild, not mild to moderate and everything looked really good. However, (don't ya just hate that word sometimes??) he said that Bennett has a bicuspid aortic valve- excuse me, a what?? Are you kidding me?? He said that this happens to about 1% of the population and people can live with it just as it is but if leaking gets much worse heart surgery would need to be done. Bennett's aortic valve is not leaking at all-praise God! Let's hope and pray it stays that way!

So after googling the heck out of it, {you knew I was going to do that, right? That's what us moms do best} the bottom line that I found was: Average lifespan is similar to that of those without the anomaly. Okay, that made me feel much better. But seriously, could we not have things happen to us that only happens in 1% of the population??? I think this was the case with Ainsley's diagnosis when she was born-ahhh!

Well, I always ask the cardiologist when he's done with Bennett: "Are you pleased with what you saw today and how he's doing?" and he said "Yes, very pleased" I then asked him if I should worry about this bicuspid thing and he said "NO!" He said to treat him like any other baby, no more scooping him up (we can now hold him under the arms) and no more lasix! And then "we'll see you in a year"- that was good to hear. So if he's not concerned then I'm going to try not to be...I stress the word try. I'll leave you with my cutie wearing his cute owl outfit (not sure if these are pj's, I guess technically they are because they have feet but who cares, they're cute);)

Still lovin' that thumb

Getting close to rolling over to his tummy!

I just love this little guy!

Bennett Will Do It.

This simple T-shirt with this simple slogan may seem well, simple but it means so much more. Jennifer from Three's A Charm has started a great campaign with these simple t's to show that kids with Down syndrome can and will achieve. She is selling the shirts for $21 (In honor of Trisomy 21) and with the money, she purchases the book "Gifts 2" and donates it to her local hospital, genetic counselor's office or a pediatrician's office.

This is what I like so much about the campaign- getting information through "Gifts 2" to the parents who have received a prenatal diagnosis of Down syndrome. We, like many other parents never received any information or hope when we first found out about Bennett. I was left to surf the net but when I left the doctor's office, some pretty scary thoughts were running through my mind. Not one glimmer of hope was given to me. Giving parents or moms this book will show them that their child can and will accomplish things in life, the wonderful experiences that their families have had with their children and that Down syndrome is NOT the end of the world!

And now to the other important part of the campaign- the little shirt and announcing the fact that children with Down syndrome will do it, can do and are doing it! And the one that is nearest and dearest to my heart: Bennett, who may not be doing much now, (he's just 3 months-give him some time) other than the that minor thing called OPEN HEART SURGERY that he seemed to cruise through (by the grace of God of course) but for now the shirt symbolizes the future for him. I have no doubt that Bennett will walk, talk, run, play, go to school (with his sisters), have friends, love (most likely unconditionally which doesn't happen with us "typical" people) and be a wonderful brother and son. And I know when he does first sit up or drink from a sippy we won't take it for granted because for him it will be a big deal and that makes it even more fun!

This all goes back to my post "Will It Make A Difference". I think it is so important for people to know the good and the bad about Down syndrome not just the bad (or in our case and most other's nothing at all) when they are faced with the possibility that their child could or does have DS prenatally. That's why I love what Libby has done and what Jennifer is now doing. One of these days when I get my feet grounded in this whole DS thing and can manage to juggle three kids, I'd love to get involved in developing some sort of pamphlet for local OB offices and especially genetic counseling offices to give to parents or mothers who are lost after receiving their diagnosis. Like I've mentioned before just something that shares the good and bad. I'm not saying to sugar coat DS because yes, their are serious medical issues that can occur and it won't be easy. But to see a cute baby on the front and show that along with the possibility of medical issues, is also the possibility of great love and accomplishments, just like any other child really. Besides, just because the baby has DS does not automatically mean he will have a heart defect or eye problems or cancer or whatever else can happen at a higher incidence with DS. And believe it or not some people are even told that their child will never walk or talk! I've never been told this and besides it's just pure ignorance but some people really think that!!

I have a feeling Bennett's sisters are going to be his biggest fans;)

So one of these days- that's my goal. Thanks to the ladies that are already making a difference and showing the world that our kids can do it and will do it!

No Rest For The Weary!

Now that Bennett is home we have to do some things a little different to help his incision and chest heal. That means no picking him up under the arms, just scooping and no tummy time for several weeks. Tummy time is so important at this age for strengthening just about everything so it bothers me that he can't do this but that doesn't mean that I'm gonna let him slack off! I've got him in all sorts of different positions that will work on holding his head up better and of course I'm always trying to engage him with his toys. At the hospital they gave us the coolest gadget to use for positioning him in many different ways. I have no idea what it's called but it's very soft and flexible and can be used to help keep him on one side, tummy time (eventually), sitting up (eventually) and as you can see in the pictures below, propping up after eating (reflux) and helping him to reach for his toys.

We also got to take home another boppy that is much plumper than the one we had so I'm loving that too. We should be able to resume occupational therapy soon so this little guy doesn't get much of a break. I know, I'm a mean mama. Honestly though, it's amazing how quickly he has bounced back like open heart surgery was nothing.

Oh and remember how I've said Bennett never really crys and he's so easy going? Well, don't get me wrong he's still a great baby and easy going (still sleeping through the night!) but ever since we've been home after surgery he's letting us know that he indeed can cry and it's almost like he's enjoying showing us just how well his little lungs work! He's not crying just to cry but when he's tired or wants to eat or wants his paci, he let's you know and he never really did that before. He's got a little 'tude! Anyways, here are some pictures of him "playing"...

He looks thrilled, doesn't he?

Hello again bug friend.

Okay mommy, I've had enough!

I love that little lip!

See You Later Alligator!

That's right....we're going home TODAY!! Bennett is our little hero. He has now officially joined the countless other little babies that have endured open heart surgery and is truly a different baby. I have never seen him smile and coo and eat as much as he has today! I think he knows he's going home not to mention he has a repaired heart! He had a good night last night, his lungs are clearing up and his O2 sats have been much better. They did a final echo and there is mild leaking of a valve on his left side which is considered normal after this type of surgery. All in all they are pleased and feel he is fine to go home!

Mike and I have been very pleased with The Children's Hospital of Philadelphia. I would highly recommend it to anyone, heaven forbid they had to bring their child here. The staff is wonderful, the doctors are top notch and the hospital itself is just really nice. We are very thankful for all of Bennett's doctors and nurses here at CHOP for taking such good care of him!!

But as much as we loved CHOP, we truly hope that we won't see them later!!;) Once again, thank you soooo much for all of your prayers!! Now we are heading home and looking forward to seeing our girls!!!

Bennett, Bugs and Baby Legs!

Bennett had a great night last night! He's eating better, heart rate is down, sats are coming back up and he's off the morphine. He's much more alert today and is starting to smile again! I decided he'd be much more comfortable in his own clothes and the nurse said it was fine to dress him so yesterday he got a bath and today we put him in his onesie and baby legs!

He is back on oxygen temporarily until his lungs clear up and he can maintain his sats above 90-95. His chest x-ray looked better than yesterday and the nurse just told us that he will have one again tomorrow as well as an echo and she said when they order the echo that usually means you're going home very soon!! So maybe Monday or Tuesday?? We're so excited! We miss the girls so much and can't wait to have everyone under one roof again!!

Here are some pics from this morning:

Back on O2 but we're not gonna let that get us down!
(he really does look like Harper here)

These are Bennett's bug friends- something for him to look at and swat at while laying in his crib.

Mommy interrupting Bennett and his bug friends.

Check out these baby legs! I love these! I wish these were around when my girls were babies- great for Bennett here in the hospital but they will also be good for when he's crawling-(one size fits all). He's gotten quite a few compliments on his baby legs-hey, my boy is going to be stylin' even if he is in the hospital!