What a Difference a Year Makes (And More Stranger Anxiety)

It was on this day last year that I found out I was pregnant!  I somehow managed to keep it a surprise from Marlon for the night.  It was exactly one year ago that I was sitting on the couch trying not to explode with excitement.  The next day was our "one month" wedding anniversary.  I went to the store, got a pack of digital tests, a baby bib that said "I love Daddy" and a gift bag.  When he got home from work I gave him his "anniversary gift."  Here we are - one year later.  I'm sitting on the couch, snuggling my precious baby girl.

We had our second appointment with the Early Intervention Therapist.  Kennedy still hates her.  And I'm not exaggerating.  From the moment she was looking and talking at Kennedy, she screamed bloody murder.  I've never seen her do this, except with Amanda.  She didn't do this with the nurse, the ARNP, or the surgeon yesterday.  When Amanda would move out of her view, she would calm down.  As soon as she realized Amanda was still there, she screamed again.  I'm not talking a little crying.  She turned bright red, fists clenched, body tensed up, eyes closed, ear piercing screaming.  At one point, she was sitting in her Bumbo, eyes closed and screaming.  She stopped crying, opened her eyes, and saw Amanda.  We were back at square one, the second she saw her.  Needless to say, I'm at a loss.  We don't have a lot of strangers around her, but my husband's co-worker held her the other day and she did fine.  We're seeing an ARNP tomorrow for her 4 month well baby visit.  I'm curious to see how it goes.  I'm torn between giving it one more attempt, and just requesting a new therapist.

3 Weeks....

Three weeks from now, my husband and I will be sitting at the hospital, snuggling Kennedy and preparing for the longest and hardest day of our lives.

Today we met with Dr. Quintessenza, the Cardiothoracic surgeon who will perform Kennedy's surgery.  He seems really wonderful and skilled in what he does.  He answered my rather long list of questions with out hesitation.  He said that Kennedy's AV Canal Defect is the easiest of them to fix, and that she's at a perfect point to have the operation done.  On a scale of 1-10 he said the complexity of the procedure is about a 4-5.  He repairs the same defect Kennedy has about 4-5 times a month, and does around 400 surgeries a year.  I'd say he's pretty qualified.  They explained the surgery, anesthesia and gave us detailed information as to what we can expect.  I think I feel better about the recovery than I did before.  They said that she should be off the Lasix about 2-3 weeks after her surgery.  Since Kennedy and I have the same blood type, i'm going to donate blood this week or next.  I know that she may end up needing more than I can donate, but it would make me feel better to know she's getting as much of mine as possible, before resorting to the blood bank.  I'm still just as terrified about the surgery, even though they assure me that the risks are minimal, though they can be serious.   The hardest part (I think) is going to be the surgery itself.  Yes, the 7-10 days in the hospital is going to suck.  But, at least the surgery will be over with.  Kennedy needs this.  She's a strong girl, and this will make her life so much better.  I'm going to do my best to be strong for her.  

Who am I kidding?  I'm going to fall apart. 

And because I know you all really just come here for the pictures. 

This thumb tastes REALLY good mom!

And for added enjoyment here is a new video of her and her "friends."  Honest, we buy her new toys, but these are her favorites.

Kennedy's Blessing

Marlon and I had decided before Kennedy was born that we would hav a Baby Blessing for her.  With her upcoming surgery we felt it was even more important.  Coordination, timing and logistics made it impossible to have everyone we wanted here so it was a small celebration, but could not have been more beautiful.  When I started researching Baby Blessings I realized there were two ways to go.  A non-denominational minister or a friend/family member.  As soon as I read this, the perfect person came to mind.  Angie was our birth and postpartum doula.  She was there from the very start of Kennedy's life and helped us through so many of our initial struggles.  Angie is like family to us, and will forever hold a special place in our hearts and our lives.  Not to mention she's one f the most spiritual people we know.

I am so happy that Andrea, the midwife who was at Kennedy's birth, and has also provided so much support was able to join us on Kennedy's special day.  It meant so much to have everyone present who was there for her birth.  Andrea's support has been never ending as well, and she too will always hold a special place in our hearts and our lives.

Angie's blessing was absolutely beautiful from the first words.  I don't think she completed her first sentence, and tears filled the room.  There was one part of the blessing that stuck in our minds, and could not be any more true.  "Born in love, Born in water, Born in the caul and Born with something extra special, Kennedy is indeed a perfect gift from the heavenly Father."

I cannot thank Angie enough for writing such a beautiful blessing and for playing such an important part of Kennedy's special day.  It was truly perfect.

Our Family

 The Blessing

A Family Photo with "Aunt Angie"

A Family Photo with "Aunt Andrea"

Andrea getting in some snuggle time with Kennedy.  This is when I realize how big she's getting!

Nap time with Aunt Angie.

 

A Great Report!

After MONTHS of trying - we finally had our first meeting with the Early Interventionist today.  The good news, I really like her.  The bad news, Kennedy doesn't like her so much.  We haven't seen much stranger anxiety with Kennedy.  I assumed she was still too young, combined with the fact that we don't really have many any strangers holding her. 

Things started out great.  Kennedy ate before she got here, and we were happily playing.  Everything went fine, until she picked up Kennedy.  Anyone who knows Kennedy, knows she has the pouty lip down.  Well, Amanda picked up Kennedy - the bottom lip poked out further than I've ever seen it, and the tears started pouring out of her eyes.  I've never seen real tears come from her like they did today. 

But Amanda said stranger anxiety is a great thing for her to be exhibiting at this age.  The only thing we really need to work on is the strength in her arms - which is what I expected.  Kennedy is right on track with everything else. 

Hopefully Kennedy doesn't forget Amanda between now and Tuesday when we see her again.

Mark Your Calendars

Kennedy did amazing at her sedated echo today.  The doctor was stuck in traffic so we were there for an hour before the sedation could be administered.  My poor baby was starving and NOT happy.  Thankfully I had woken her up at 3am to feed her.  We were able to get through the extra wait with out too much trouble. 

 Trying to amuse Kennedy before the sedation could be administered.

Once the medicine was administered and I got her to sleep, I thought we were finally ready.  No.  The Sonographer was 40 minutes behind.  All I kept picturing was her waking up before we even started.  As it turned out, we made it through most of the test before she started to wake up.  Her eyes popped open and she let me know she was hungry and ready to eat!  She devoured her bottle and even helped the nurse pull off the EKG leads.

The Cardiologist said she's doing amazing.  The echo looked really good.  She said she has no reason to believe that the surgery and recovery won't go as smooth as possible.  The concern over her aorta is no longer an issue, so that will not be addressed in surgery.  We meet with the surgeon on Monday, and will get a tour of the facility.  We'll be admitted on July 4th and the surgery will be the morning of July 5th.  The best thing about having surgery that week is that our cardiologist is the one assigned to hospital rounds that week.  I feel like this is a huge relief.  She knows where we stand on things like formula and we won't have to try and adjust to a new cardiologist, or one that we aren't comfortable with.  She told us to plan on two weeks in the hospital, but she felt it would be less. 

So, here we are.  I swear, it feels like yesterday we were just hearing her diagnosis and the news that she would need open heart surgery.  Now we have a date.  This feels too real now.  Where is my fast forward button when I need it?

So, I ask you all to please mark your calendars and send a few extra thoughts and prayers to Kennedy on July 5th.  

Kennedy talking to her friends on the way home.

 

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. 

Kennedy's Vacation!

Marlon and I had a lot of vacations planned for this summer.  Unfortunately, with Kennedy's upcoming heart surgery, they were all put on hold.  We REALLY wanted a weekend getaway, to spend time as a family with out the distractions of every day life.  We decided on a quick trip to Clearwater Beach.  How lucky are we that we can just toss our stuff in the car and hit the beach for a weekend?

Well - first of all.  There is no such thing as a quick trip to the beach when you have a baby.  I didn't have a clue just how much stuff we actually had to bring.  Once I started thinking about it, I almost thought about staying home!  As we were packing things up, I kept thinking how much we need a bigger truck.  Like maybe an 18 wheeler?  I left the house Friday thinking we needed a bigger SUV.  I came home thinking we need a minivan. 

We had a great time, and even got to meet one of my "online friends" that I feel like I've known forever.  Kennedy loved the beach and the pool.  She spent some time napping under an umbrella and was the hit around the hotel.  She did fabulous at dinner Friday night when we took to the steakhouse.  I made 8pm reservations thinking she would be asleep or close to it.  She was wide awake - but a happy baby and a hit!

Most importantly here are some pictures from the weekend!

Kennedy knows the right way to hang out poolside!!

She loved playing with her friends on the bed while we got ready!

Sleeping BEFORE dinner.

Wide awake DURING dinner

Dancing with Daddy

Sound asleep AFTER dinner

Daddy Snuggles

Ready to go to the pool.  Apparently her bathing suit tasted rather yummy! 

"C'mon Mom, let's go swimming already!"

As always - she loved the pool!

Mommy and Daddy didn't really think through bath time.  So Miss Kennedy ended up getting her baths on the bathroom counter...on top of a pile of towels.  I feel bad for the cleaning staff that was responsible for our nightly cleanup and turn down service.  Towels and water everywhere!  But Kennedy loved it!

Wide awake - hanging with mommy and daddy at the hotel bar!

Milk on the beach - this is the life!

 

Our Family!

Kennedy absolutely loves this elephant still. Note to self, take it with us to the hospital.

I'm pretty sure Kennedy was eying my cheeseburger!

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.

Learning a Lesson

Trust your mommy instinct!!  It'll save you $35 and an unnecessary trip to the cardiologist.  Okay, so maybe it won't save you exactly that.  But believe me, it'll save you some hassle.  This is something I've been really good at so far, but the closer we get to surgery the more I get paranoid.  Knowing my baby is in heart failure does something to your mommy instinct and still makes you question things.

Over the weekend I noticed that Kennedy was breathing a little heavier when she was playing and really active.  Of course, I know this is probably normal with her heart defect, but the paranoid side of me got nervous.  I called Saturday morning, hoping our cardiologist would just assure me she was fine.  I should have known I was doomed when I found out that it wasn't our doctor on call, but the one that I HATED from the NICU.  He has no bedside manner, and stood in front of us arguing with the sonographer over the echo.  I should have known this spelled trouble!  He called me back and told me to take her to the Emergency Department.  WHAT?!  He said that she should be seen right away since she's in distress.  Excuse me?  Did I say she was in distress?  I told him I was NOT taking her to the emergency room where we'd sit there for who knows how long to be exposed to who knows what kind of germs.  I emailed our doctor, and she agreed.  I got a call this morning that I had to take her in today.  I walked in and they told me they were going to do another echo.  I wouldn't be me if I didn't question things.  I pretty much told them they were crazy.  They didn't tell me they were doing an echo, I didn't bring enough milk to spend the whole afternoon there, and we're having an echo under sedation next week.  Did I mention we pay $300 out of pocket for each echo?  Our doctor was on hospital rounds so we had to see my BFF from the NICU and my weekend call.  He acted shocked that she wasn't blue or struggling to breathe and couldn't understand why I was concerned.  When I explained for the hundredth time that she's breathing heavy when she's active he looked at me like I had ten heads and said that was totally normal.  WHY couldn't he tell me that over the phone?

It's a good thing I'm not a parent who trusts everything a doctor says.  I would have wasted a day and a lot of money sitting in the ER just to be told what I suspected - that it's normal for her case.  Or I would have spent $300 on an unnecessary echo, had I listened to them today.  This will teach me to trust my mommy instinct.  I knew she was okay, and not in any distress.  But the whole "heart failure" diagnosis can really mess with a person. 

"I don't want my Lasix.  I will not open my mouth, and don't think about taking my ball away!!!"

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!"