So Big!!!

Everyone says babies grow up quick, and I'm still truly amazed at how fast time goes by with Kennedy.  It seems like just yesterday I was sitting in this very chair, crying my eyes out just hours before she was admitted for open heart surgery.  Now I'm sitting here crying happy tears as I think about how proud of her I am.  We've gone from sitting up unsupported for a few seconds at a time, to being able to leave her on the floor to play with her toys, while I make dinner.  Of course, every now and then she gets REALLY excited and kicks her feet like a maniac, and tips over.  The good news - mommy quickly learned to keep a down pillow not far behind.  We have had SO much fun playing with all of her toys the past few days.  I can't get enough of the excitement that radiates from her all day long.  The smiles, the giggles, and the squeaks and squeals as she explores and discovers new things.  I could not be any more proud of my little girl.  It brings tears to my eyes, just thinking about how much she's been through and all that she's over come.

It took a long time for me to catch her at just the right moment where she was going to tip over.  This is hysterical!

And of course, photos.  These are just a FEW of the 500 that I have taken over the past two days.  Good thing digital is cheap.  I apologize in advance that there are so many.  But she was having SO much fun, and her little faces are so cute.  I can't just pick one.  Or five.  Or ten to share.

Mom this toy is so cool!  I love the way the air feels!

Mom, how does this thing come off?

I got it!  This thing is fun.

I need to show my monkey this toy!

This is so fun mom!

Did you know it makes music when you move them mom???

How come I never realized this before?

  

Can we bring this to the beach next week mom? 

Mmm...yummy!

Look mommy!  Only two more left.

 

I was so excited for mom to help me get them back on that I started kicking and tipped over!

 

Yummy!  Fresh squash.  I got really hungry after all that playing!

A Little More Every Day

Five months ago Down syndrome seemed like the center of my universe.  And it occurred to me yesterday, that I hardly write about it anymore.  Marlon and I decided from day one that we would not let it run our lives, and that it would never be about what Kennedy couldn't do, but what she COULD do.  And let me tell you, she's sure showing us everything she is capable of.  Not only has she shown great progress in meeting her milestones so far, but two weeks after surgery she's continuing to do so well, despite the limitations. 

For many people it's like a contenst, to see whose baby starts doing what when and whose baby is bigger than whose.  In the long run, does it really matter who is sitting up first?  Was that on the last job application you completed?  No - Kennedy isn't rolling from back to front, and no, she's not sitting up.  But she is giving us kisses, blowing raspberries, sitting with support, playing with toys, eating pureed carrots, and most of all, she's making awesome progress in her recovery from open heart surgery.  All of this competition and the shocking remarks that she's not sitting yet make me want to say, "When did your baby do THAT?"  But I'm not that kind of person.  Sometimes I wish I was. 

Kennedy has to work a lot harder to do things that "typical" babies do with out even thinking about it.  That makes every thing she does even more of an accomplishment.  I don't take anything for granted.  Every milestone, no matter how small it is, is cause for celebration.  The fact that she grabbed onto the book while I was reading to her the other day is a big deal, while many people wouldn't think of the significance of that.  Each day we learn a little something new, or make progress with something we've been practicing.  My mom and I went shopping yesterday (imagine that) and scoured the aisles of Toys R Us for some new toys for Kennedy.  Keeping her busy since surgery has been a real challenge, so we're constantly trying to introduce new things until we can return to our normal activities.  Buying toys is a science for us.  I know that Kennedy won't necessarily use them for what they are intended at the age it indicates.  But for us, it's a matter of finding things that can help her develop certain skills.  We have to find new ways of using some of the toys, before we can really use them as intended.  And even some of the more straight forward toys, it takes patience and teaching for her to understand what to do with them.  Yesterday we taught her how to play the piano.  We also sat and played with bubbles.  Okay, okay.  I blew bubbles and she got excited to see them floating by, then popping when she poked it with her fingers.  We also made our second attempt with carrots yesterday.  She seems to like them more and more with each attempt.  And she's definitely starting to get the concept down.  After a few bites she was opening her mouth every time the spoon came towards her.  She ate half the container!  And followed it with 4 ounces of milk.  These are the moments I live for as a mom. 

Learning to play the piano!

Yummy mom!  More carrots. Now I'm going to do raspberries and get them in your face!

Can We Go Home Yet?

For real.  There's nothing worse than being in the hospital with a baby who feels wonderful.  She is so full of energy, it's crazy to me.  And like everyone said, we didn't know just how sick she was until her heart was repaired.  Now she wants to be awake, playing, talking, etc.  Marlon and I have had many sleepless nights here.  One would think having a baby less than a week out from open heart surgery that I would have a lot of time to post updates.  Not so much the case.  Kennedy NEVER sleeps.  It's getting impossible to amuse her in a tiny room, when you can't walk 6 inches from the bed because of the wires from all the monitors. 

We were supposed to be going home yesterday or today.  The ARNP came in and went over all of the discharge paperwork FRIDAY night.  Even made us go get the prescriptions filled.  Everyone warned me not to get my hopes up about going home, and I was perfectly fine with being here as long as we needed to be.  Until now.  The ARNP who went over our discharge paperwork told us all we needed to do was get her lungs clear and off the oxygen and we could leave.  They started her on a  new medicine on Friday, to help clear the fluid out of her lungs.  Unfortunately the doctor ordered it IV, but it was started orally.  But with the IV dose.  The doctor realized it during rounds Saturday but we essentially wasted 36 hours before she could be given the correct IV dose.  Then last night the nurse only took her off the oxygen for 5 minutes.  When it dipped a little, they put her back on.  The doctor said this morning during rounds that it wasn't a fair chance, and she should have left it off longer to give her body time to adjust.  So another day wasted.  She came off the oxygen and is doing wonderful.  But now they want to keep us until the end of the week to change her medication from IV to oral.  WHAT???  No one ever said that, and WHY does it take 5 days?  I'll be speaking with the ARNP who was planning to discharge her during rounds today.  Today also means a new doctor for the CVICU and a new cardiologist.  Another one whom I've never met.  I suspect I'll be putting a call in to my cardiologist today as well.  On Saturday the hospital cardiologist said she called Dr. Nardell and that she was on board for a quick discharge once the oxygen was discontinued.  They even did the echo on Friday already for her discharge.  The ARNP went over all the findings and said it was completely normal for being post-op and that they would repeat at 2 weeks when we saw Dr. Nardell for her follow up.  But now they want to do another one today?  I don't get it.  We've seen nothing but improvement.  I'm not willing to pay for a bunch of unnecessary tests, or stay here even longer if we don't truly need to be.  I won't even go into the fact that I heard someone say, "This is great, we're almost at half capacity" last night. 

I finally got a swing and a bouncy seat for her for her.  Of course, it doesn't swing.  So I spent a few hours yesterday afternoon pushing her in the swing.  Oh, and the mobile doesn't turn on its own.  So I also spent a few hours spinning the teddy bear mobile.  Kennedy was looking at me like, "Are you kidding mom?  I'm supposed to be happy with this instead of my sheep?"  The bouncy seat has no toys on it.    But at least it's somewhere else for her to sit.  It's just a matter of keeping her entertained with what we have.  I also had daddy go to Toys R Us yesterday and bring back more toys.  And bring the play mat from home, which is now on the bed.

As if trying to keep her entertained all day isn't hard enough, there's the whole lack of sleep issue.  Since she can't use up all of her energy she's not really napping, and doesn't go to bed until around 11pm.  Then the nurses are in all night.  Hr monitors don't pick up the right signal, so they are constantly going off, and the nurses are coming in to correct them.  Then there are the IV lines.  Every time one finishes it beeps.  Loudly.  Until someone comes and shuts it off.  They also wake her up to change her diaper.  Ridiculous.  Just let the poor baby slep!  Because you aren't the one dealing with trying to get her back to bed.  By the time I get her back to sleep, they come in again.  Between being sleep deprived and bored, Kennedy is miserable most of the time.  I just want my happy baby back!

Snuggles with mama!

Mmmm....MILK!

Excuse me mom?  Why do I have socks on my hands?

Kennedy sent Grandma to the grocery store for a cake for Mommy's birthday!

Kennedy doesn't look so thrilled about the socks on her hands.  At least they had monkeys on them.

Mama Snuggles!!!!!!  FINALLY!  (I was so afraid of hurting her incision).

Looking at Pinky!

Mom...who is this crazy nurse lady?  And why is she blowing bubbles at me?  (We loved Devra!)

Just chillin' in bed.

"WTF?  Where are my sheep and why doesn't this thing move on its own???"

Drastic times call for drastic measures.  Even if it means the play mat on the bed.

Kennedy has her purse, and she's ready to get the heck out of here!

Fun and Games

Today's agenda was to finish cleaning the house and go food shopping.  I didn't accomplish either of those things.  It was raining.  Again.  So instead of cleaning or food shopping Kennedy and I just spent the day having fun.  We did tummy time, played with toys, sang songs while we danced and rolled around on the floor.  It's REALLY hard to take pictures while you're doing all that.  I wish I had some sort of a camera and video camera attached to me so I could capture all of Kennedy's giggles and smiles.  I can't get enough of them, and they just melt my heart.  She is SUCH a happy baby, with so much personality and so many expressions.  I am one lucky mama.  I love you Kennedy Aleise!

Sleepy baby - one would think she slept for hours after all that playing.  No, not really.  She slept 20 minutes.  And then stayed up until 11pm.

How Did This Happen? And Other Ramblings.

Everyone says that time flies when you have kids.  Boy were they right.  The nine months that I was pregnant seemed to drag on and on.  Now that Kennedy is here, the time is flying.  I seriously need a pause or rewind button.  Or maybe a fast forward button to get us through surgery. 

When we got Kennedy's diagnosis it felt like surgery was something that was an eternity away.  I refused to even stress about it at the time.  Now, the count is on.  We're about three weeks away from it.  Sometimes I still feel like it's all a bad dream.  I'm not prepared for this.  Is anyone, ever really prepared?  I don't care how often the surgeon does this procedure, and I don't care how many more significant things he's done.  None of them have involved my baby.  As we get closer to surgery I find myself doing less and less.  I find myself just wanting to play and snuggle.  All the time.  There's so much to do, but I just want to enjoy every minute with Kennedy before her surgery.  Last night she was wide awake playing with her monkey security blanket. 

We stayed up until 3am playing games.  As tired as I was, it was so darn cute.  Tonight I'll be waking her up around 3am, to make an attempt at feeding her.  We have an appointment for an echo under sedation in the morning and she can't eat after 4am.  I've been dreading the appointment all day.  There's nothing reassuring about hearing that your baby will be dizzy, groggy and unable to lift her head after.  I know they need a good echo before surgery, but I hate that there's no other way to do it.  This is nothing compared to surgery and mommy is a wreck.  This is just not going to be a good.  The only good that can come  of this is a lot of snuggle time with mama later. 

Protector

As parents, we always want to do what's best for our children and protect them from whatever we can.  I worry about the fact that I can't protect Kennedy from all the idiots in the world.  The ones who make stupid comments and don't understand how truly amazing she is.  My husband and I had a discussion this weekend, how much it hurts us that we can't protect her from all the pain and suffering of her heart condition, and the upcoming surgery.  We would do anything to take it all away from her.  She's so little and innocent, and she doesn't deserve to have to go through any of this.  And one of the hardest things for us, is that we can't take it away or make it all better.  I know that there's going to come a time in the hospital where she's going to look at me to make it better, and there's not going to be a thing I can do.  I won't even be able to give her "mama snuggles," since she won't be able to curl up on my chest.  I'm going to be completely helpless and that breaks my heart.  

Last night my husband was able to be the protector.  I woke the poor guy up at 1am, to handle a giant spider running through the family room.  I don't like big bugs.  And if I had to, I would have found a way to deal with it.  But instead, my way of dealing with it was to wake him up.  So at 1am, he was chasing the giant spider around the living room, while I was sitting on the arm of the chair holding Kennedy.  Had Kennedy not been sound asleep, I'm sure she would have been thrilled with daddy for protecting her from the giant spider, that was probably the size of her hand.

Today, I also found out that I can't protect Kennedy from her toys either.  She was having a great time.  I pulled out a bunch of new toys.  She was laying on the ottoman (we're avoiding the floor after last night's spider incident) and playing with some rattles.  She picked one up, and after playing with it for about 30 seconds, she bashed herself in the head with it.  Poor baby.  Though, I have to admit, looking back at the video, I had to laugh.  And in the end, no harm done.  She played with the rattle again tonight, and with out injury.

She's Not THAT Small and Other Ramblings

So here we are at 3 1/2 months old, and weighing just over 10 1/2 pounds.  Some of Kennedy's friends that are her age weigh as much as 16 pounds.  Yes, I know my baby is small.  She's barely on the charts for an "average" baby, but she is in the 75th percentile for weight and length on the Down syndrome growth chart.  I have to admit, I'm really sick of hearing how small she is.  People constantly ask how old she is.  When I tell them they look at me in disbelief and they all say the same thing, "She's so small."  And then they just stare at us, as if I'm starving her or something.  I really have no interest in giving complete strangers a play by play on my daughter's heart condition, so I usually just let them think what they want.  I thought it was just me, but after being out and about for most of the weekend my husband said the same thing.  This is only one of the things that people say that drives us crazy.  We won't get in to the rest.

In more fun news, Kennedy is SO close to rolling onto her belly from her back.  She hates to be on her belly though, so I don't expect that it will happen anytime soon.  My shopping addiction has been all about the clothes since I found out that we were having a girl, but now she's finally starting to enjoy toys, so my priorities are shifting again.  We got her a Baby Einstein ball this weekend and she's doing really well holding it.  We also got her a monkey security blanket that she seems to love (maybe I should buy a few back ups now.)

  The elephant makes car rides bearable for mom and dad and fun for Kennedy!

"Daddy this elephant is sooo funny!"  (She was really thinking - if I keep daddy amused he won't realize how much mommy is spending on my new clothes.)

  

"Hey I finally figured out how mommy makes this thing talk!"

"Mommy where did you put Sophie?  Wait I see it - what's it doing down there?"

 Hi Mommy!!!

"Oh my gosh these friends are just sooo much fun!"

"Back away from my monkey!"

I Don't Remember

I seriously can't remember what my life was like before Kennedy was born.  All I know, it must have been pretty darn boring.  Yes, I love my husband.  Yes, we have done a ton of great things, taken amazing trips, and had a lot of fun.  But nothing compares to our life with Kennedy.  In years past we spent Memorial Day weekend traveling...usually hitting a beach and having lots of drinks with fruit and umbrellas (oh, and alcohol) in them.  Tonight we kicked off the long weekend at home with Kennedy, a couple of steaks on the grill, and a glass of red wine.  We rolled around on the floor with her while she kicked at her play mat and gave us giant smiles and endless giggles.  It was better than any beach bar.  However, Kennedy is apparently a real party girl, since she's kicking off the weekend by staying up late tonight.

As I was laying on the floor I couldn't help but think how I've never been happier.  Yes, we're facing open heart surgery next month.  And yes, I'm still completely terrified.  But - we've got an amazingly strong little girl and she's going to do awesome.  It was exactly 14 weeks ago that we were heading to the birth center.  It's been the most amazing 14 weeks of my life.  It hasn't been with out challenges, but each has made us stronger.  The time has flown by.  It feels like just yesterday that she was born.  It makes me sad that she's growing up so fast, but I love everything that she's doing.  It hit me this week that she's not a newborn anymore and she's really turning into a little person.  I just love her little personality.  And I could listen to her "talk" all day (which is good, since she does!)  I guess she takes after her mama. 

Today after her nap (a very short one at that) I went in and picked her up and she gave me the BIGGEST smile.  It brought tears to my eyes when I saw how happy she was to see me.  The baby kisses are endless, as are the snuggles.  Last night, she fell asleep holding onto my hand.  This morning, I woke up when she hit me in the head with her rattle.  (Note to self - don't bring toys to bed.)  Even though it was a rude awakening, I loved seeing that she found her rattle and picked it up.  She's so close to rolling from her back to her belly and I am SO proud of her.  Today she stayed on tummy for almost 45 minutes and was doing great at pushing herself up.  I know these things are REALLY hard for her, but just like her mommy and daddy - she doesn't give up.  She's going to show the world that she can do so much and make a difference in so many lives.

There aren't enough words to express how much I love her and how much she's made my world brighter.  Things that were once really important, suddenly don't matter at all.  Our lives have changed a lot since Kennedy's birth, and we're loving every minute of it.   

Kennedy learned that it's fun to hit her toys with the rattle.

 

Adventures in Tummy Time

Since Kennedy's Early Intervention therapist can't work us in for another 2 weeks I've been working overtime to get Kennedy to strengthen her neck and upper body before her surgery.  She absolutely HATES tummy time.  I've tried everything.  Sometimes she rolls over.  And other times, like today, she tries to make an escape.  I guess at least we know she has really good lower body strength?  At this rate she'll be crawling before anything else. 

Notice - the foot and the arm up.  I swear she was trying to crawl away.

Once again - trying to escape?  Face buried in the floor, and on her knees.

 

Then she gave up and decided to suck her hand.

 

In addition to all the fun (sense the sarcasm?) we had with tummy time, we also went swimming.  Grandma came over to play today, so we were able to get some pool time pictures!  As usual, Kennedy had a great time!  She is most definitely a water baby.

And to finish things off (because I've been slacking on photos lately) - here are some more play time photos.

I'm not entirely sure what this face was all about.  I'm pretty sure it was part of a "conversation" with one of her friends!

Kennedy has recently been very into her rattles.  Today, she finally figured out how to call daddy at work.  Then she hit herself in the head with the rattle, and wasn't so happy.

However, she did not learn the importance of leaving a voice mail, so if you get some random calls from us, you know who it is.