Blogger Fail. Updates.

It's a miracle that I made it through 31 for 21, because I haven't blogged in almost two weeks since it ended.  It's been a busy two weeks, preparing for the move, dealing with illnesses, teething, and appointments.  It's hard to believe that we're leaving in just 3 days.  In the past two weeks so much has happened.  We saw cardiology and were cleared not to come back for a year.  As I sat in their waiting room, watching Kennedy run around, playing with all the toys, another mom started talking to me.  She had a baby Caleb's age.  She was tiny.  When the mom asked me how old Caleb was and I told her, I saw that look.  The look that I remember giving off, when Kennedy was a baby and I met other kids her age, two or three times her size.  It made me think back to the bi-monthly cardiology visits that we were making for so long.  The time leading up to her surgery.  My life was centered around that.  And now here we are, not going back for a year.  Through the Mended Little Hearts program, I've also been speaking with other parents lately.  Parents of children who are having their AVSD repaired.  In answering some of their questions, it's occurred to me that something that was once the center of my universe are now fuzzy memories.  I actually had to reference my blog to answer some of their questions. 

In the past two weeks we've also said goodbye to a lot of friends.  Mostly people that I've met since Kennedy was born.  People who will always have a special place in my heart.  People who promised me that "it" would be okay.  The women that I cried to, in fear of what our future would hold.  The women who supported me through my struggle with breastfeeding.  The women who were present for the birth of both of our children.  The friends who have supported us through open heart surgery and helped us to celebrate Kennedy's milestones.  The friends who have recognized Kennedy for who she is and how many chromosomes she has.  I feel like we've come so far since we met them.  I distinctly remember meeting Amanda and her son at my first Mom's Group.  We compared horror stories from the NICU.  We had swim dates with the kids.  We were both pregnant with our second children at the same time, battling the fear of another NICU experience.  We welcomed our babies into the world just weeks apart.  I'll never forget when my midwife visited me in the hospital, and gave me Stephanie's phone number.  She told me she had a son with Down syndrome, and that she would love to talk to me.  I remember the first time we talked.  I cried.  A lot.  And I hung up, replaying in my head that things would be great, and that it gets easier.  She offered to take newborn photos of Kennedy.  And Kennedy flopped around in her flower pot, making it difficult to get photos.  And just a few months ago, she offered to do Caleb's newborn photographs.  And Caleb was equally as uncooperative. 

The hardest goodbye of them all was my Doula, Angie.  We reminisced about the day we met for the first time.  AS usual, I had 5,000 things going on and my mind was in 20 places.  The day that I made the decision to hire her, I had no idea just how huge that decision would be.  I never imagined that we would need the amount of guidance and support that we did.  Angie or "Aunt Angie" to the kids, has become a part of our family, and will hold a special place in our hearts forever.  Of all the "goodbyes" this was the hardest, and the most tearful. 

Today we said goodbye to our Physical Therapist, Holly.  Holly has been with us since January, and I owe her some credit towards Kennedy's success with walking.  She has given us some excellent guidance and has always praised Kennedy for how wonderful she is.  I know by experience that good therapists are hard to come by, so this was a difficult goodbye. 

Of course, with all that said, we're very excited about moving forward.  I'm ready to put all of the stress of the move behind us.  To get the kids rooms and play rooms set up.  To run around the back yard with the kids and not worry about snakes and alligators.  To see Kennedy learn and grow around her cousins and to watch the fun that they will have together.  Most importantly, to have more time as a family.  I'm looking forward to meeting new friends, and play buddies for Kennedy (and Caleb.)  I know that I will form new friendships with memories just as special as the ones I have here. 

Enough rambling.  Here are some photos from the past few weeks. 

Showing off my walking and my hair cut!

The nice therapist at Hope Haven told mommy to give me Twizzlers to help strengthen my jaw.  Mommy wasn't too thrilled with the idea, but this is one therapy I'm okay with.

Can we do this therapy more often?

My little brother is getting to be more fun.

Playtime with Grandma.

We went to vote.  It was exhausting.  I was being adorable, and all the people loved me.  And then I fell asleep because it was taking so long.

Even with two teeth and being sick, I'm still smiling.

What do you mean I can't wear tank tops after this week?

Come on mom!  I want more swinging.  See....I'm signing "more."

Bedtime, what?  No thanks.

Vacation Photo Bomb and Other Updates

Kennedy is getting more and more mobile!  Pulling up, scooting, and just getting around!  She *can* crawl, but Kennedy is Kennedy and she does things the way she wants.  And she doesn't like being on her knees, so she uses her butt to get every where.  It's been 3 weeks since we saw our Early Interventionist last and she was just blown away at the advances that Kennedy has made over the past few weeks.  She's also *talking* more and more.  And I can't forget about her new found love for yelling.  She's not unhappy, but she loves to yell.  At the top of her lungs.  Sometimes in hotels, at 11pm.  Sometimes in the close confines of the car...for three hours.  And even in doctor's offices.  Kennedy makes herself known. 

Today was also a Cardiology follow up.  Kennedy rocked it!  We got another perfect report and Kennedy weighed in at a whopping 17lbs 13oz!!! 

Here are some pictures from the past week.  And I promise, you'll start seeing more updates from me! 

Sleeping on Aunt Michelle and Uncle Sam's pool table.

Hi Great Grandma.  I like your necklace.

I can't handle all this family time.  I'm exhausted!

Enjoying the beach!

I think we should start every morning with a walk on the beach.

Hanging out poolside!

 Yes, I'm cute and I know it.

And sometimes I'm shy.

Mom, stop taking pictures,  I don't really like this hat.

Daddy, can't we get a pool at home?

Swimming is fun!  But don't think I'm going to sleep more tonight.

Okay, maybe swimming made me tired.  I'll nap now.

 Did someone say I was getting ice cream?

With sprinkles????

 

I had a little bit of ice cream, and now I'm up partying.

Mom, why don't we ever bring my bike on vacation?

This thing is so much fun!

Look mom, I'm steering!

Diagnosis: Perfect

I'm way too tired to be blogging tonight.  But I was also way too tired last night.  I swear, one of these days I'll get back into it.  My goal for tomorrow is to write a serious post.  One that I've been working on in my head for several days, and I am determined to find the time, long before midnight, to sit and do it.

In the mean time, we had Kennedy's appointment with the cardiologist yesterday.  Three months ago when we were there, the doctor was slightly concerned by the elevated pressures in the right side.  Not concerned enough to think anything was wrong, but he said they wanted to watch it.  Needless to say, I've had some major anxiety leading up to this appointment, but I was also happy that we'd be seeing our normal cardiologist again, since she recently returned from maternity leave.  Dr. Nardell was THRILLED with Kennedy's progress.  Said she's doing amazing and that her echo is perfect.  No concerns what so ever.  What a huge relief this was!  Of course, Kennedy was happy to have Dr. Nardell back and was acting like a total ham through the whole appointment.  Showing off all of her skills and her big cheesy smiles while stuffing her face with cheerios.  Silly little monkey.

And with that, I'm off to bed.  I promise.  Serious post tomorrow.  And I'll take a few pictures to include as well.

31 For 21: Appointment Day

Poor Kennedy had to put up with all sorts of appointments today.  First up was Cardiology.  Kennedy has a routine on Cardiology days.  She wakes up to party in the middle of the night, so that mom oversleeps.  She followed through as always.  Despite waking up late, we arrived promptly for our appointment.  And we waited.

I'll just sit here and play while you fill out those papers.

Then we got weighed - just under 16 pounds.  We measured in at just over 25 1/2 inches.  She skipped her tradition of peeing on the scale.  Then it was time for the EKG.

Hey miss Deb, let me help you with those wires.

Then it was time to wait for the echo.  We waited, and waited and waited.  Luckily, Kennedy was pretty content.  Her piggys were the hit of the office and everyone came in to see us her.  We played with Sophie and Flutterby and we even had a snack. 

Mom!!! Stop taking pictures of me.  I'm NAKED!

Nom nom nom....I love my Mum Mums. 

Finally - we had our echo.  Kennedy hates this part, and didn't make it a pleasant experience for the tech.  Fortunately, she loves Kennedy, and was happy to see her squirming and moving around the table.  Then we waited some more.  And we played with our ball.  Seriously, I have no idea how I got so lucky to have such an awesome kid.  This was more than 2 hours after we got to the doctor.  She was handling the wait better than I was.

I can't believe you only brought two Mum Mums. I guess I have to eat my ball.

Here mom, want a bite?  I'm okay with sharing.

Go long mom!  Hurry!  I'm gonna throw it out in the lobby!  Catch!

How come we don't come here to play more often?

All in all, it was a great cardiology appointment.  The doctor said that her repair could not look more perfect.  There's no leakage around the patches or the valves.  There was a slight increase in the pressures on the right, that we need to check again in 3 months.  He said it's not uncommon in kids with Down syndrome, and he really thinks it's an isolated incident.  However, it can be an indicator of sleep apnea, so we'll have to investigate further if it increases.  Soooo....we go back in 3 months, instead of a year. 

We also had Early Intervention today.  I'm pleased to say that it went amazingly well.  There were some tears in the beginning, but she spent much of the time full of smiles and showing off her accomplishments.  In an attempt to get Kennedy to like Amanda even more, EI will take place at the park next week. 

And to end our day on a negative note, Kennedy is officially sick for the first time.  I feel absolutely horrible.  We have worked so hard to keep her healthy, but we failed on this one.  Of course the mommy guilt is kicking in.  I've found 100 things I should or shouldn't have done.  I'm just praying that this is nothing more than a common cold and she gets through it quickly.  

I did manage to snap a few pictures earlier, before she started feeling yucky.  

Another Great Appointment!

I always dread cardiology appointments.  My biggest fear is that something will have changed or we'll get some sort of bad news from her ECHO, EKG, etc.  Even though everything has been going so well, I was nervous!  This was our first appointment since stopping her Lasix.  Well, everything went great!  Dr. Nardell was completely thrilled with her ECHO, her vitals, and how well she is doing overall.  There is a very minimal amount of leakage around the mitral valve, but it has improved since the last echo a month ago, and she said that it will probably continue to correct itself.  Even if it doesn't, it's not an issue.  We'll be weaning her off of her blood pressure meds, and in two weeks we'll stop them completely!  We don't even have to go back for another 2 months!

We can truly celebrate and enjoy our vacation!  That is, if Hurricane Irene lets us.

Here are some recent pictures and a video of our little miss eating rice for the first time!!

Mom!!!  Help me!  I can't figure out how to crawl!

Loving our Ergo! 

Meal Time = Play Time

Exploring rice!

 

I love when mommy gives me new food to try!

 

Enjoying the Other Side

Yesterday was Kennedy's first post-op appointment with her Cardiologist.  I used to dread these appointments.  I was always expecting some bomb to drop, or for an argument about her weight.  Yesterday was different.  Of course, I was worried that something would be wrong, but over all I had a sense of relief going to the appointment.  The last several times that I've been to the office, there were lots of tears and anxiety.

The appointment went really well!  Kennedy is up to 12lbs 10oz.  She sucked down a six ounce bottle in about 15 minutes when we got there.  The nurse could not believe the way she was eating!  She fell asleep and the sonographer got her echo done in no time.  She took another 5 ounce bottle after her Echo!  Dr. Nardell couldn't believe how well she was eating!  Her echo looked even better than the one done at discharge.  There is still a slight amount of leakage around one of the valves, but it is even less than last week and to be expected at this point.  We are weaning her off of Lasix, and will be able to stop it completely in 2 weeks.  She'll remain on Enalapril until our next appointment in one month, then we will begin to wean her from that too.  Unfortunately for us, that's when Dr. Nardell goes on maternity leave, so we'll have to see one of her partners while she's out.  We have 3.5 weeks until we can resume tummy time and lifting her under her arm.  Her incision from the actualy surgery is healing beautifully.  We have a little more time on the healing from the chest tube though.  As she explained to us, they use a lot of care and precision for the main incision but when it comes to inserting the chest tube they aren't as precise, and they just leave it to heal on it's own.  So it takes longer and looks worse. Once that heals a little more, we can resume regular baths and SWIMMING!!!! 

We also got the okay to transition her back to exclusively breastfeeding!  This is going to be a huge task to take on, but I'm determined and I'll do whatever I can to make it work.  My postpartum doula and friend, Angie, is coming back to help Monday!  I've been making attempts, and while it hasn't been a complete disaster, it's also not going great.  She loves to use me as her personal teether, rather than eating...OUCH!

It feels so good to be on the other side of surgery.  The worry and anticipation are gone and we can truly enjoy life with our beautiful princess.  We are eagerly planning Kennedy's first big vacation, and are eager for her out of town family, and especially her Great Grandparents, to meet her for the first time.  If anyone knows of somewhere that we can rent an affordable 18 wheeler or motor home to pack with all of our stuff, please let me know.

I'll leave you with some of Kennedy's new favorite thing to do.  Blowing raspberries!  She does it all the time.  When she's happy, when she's mad, when she taking medicine and when she's eating her carrots!  Yesterday she did it to Dr. Nardell!  The video was this morning in bed. 

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.

 

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!!!"

The Black Cloud Approaches

Kennedy's Cardiology appointment went really well this morning.  She weighed in at 10lbs 9oz, which they were very happy with.  She said she's doing wonderful.  We go back in two weeks, for the final echo before surgery.  We'll meet with the surgeon the week after that, and we're on target for surgery at the end of the month.  The doctor performing the surgery will be Dr. Quintessenza, whom I've heard amazing things about.  He's the head of the department at the children's hospital, so I know we are in good hands.   If all goes well, it's my goal that we will be home and on the road to recovery by my birthday.  What an awesome gift that would be. 

Once again, I had a meltdown at the appointment.  I'm absolutely terrified, and nothing can change that.  I don't care how amazing the surgeon is, and I don't care how many times they do this.  It's open heart surgery, and it's my baby - nothing can make me feel better about it.  In fact, I used to think that meeting with the surgeon might make me feel better, but I'm pretty sure that it's just going to give me even more things to be terrified of.  The day we have to take our daughter for open heart surgery will absolutely be the worst day of my life.

Mommy Had a Meltdown

To say that today was not a good day is an understatement.  Kennedy had an earlier than planned cardiology appointment, to get her Lasix increased.  Mommy had a meltdown.

While she is gaining weight, the doctor wasn't thrilled with it.  She's weighing in close to 10 pounds now, but not gaining as fast as she was a few weeks ago.  Hopefully, with her Lasix increased (again) she will start gaining faster (again).  He explained that the heart failure is progressing, which is normal for her condition and to be expected.  Every time I hear the words *heart failure* in regards to my daughter's condition I cringe.  Well today, I cried.  A lot.  I know that she's doing well, and that this is to be expected, but it doesn't make it any easier to face.  The poor doctor, was not our normal cardiologist.  We met him in the NICU (and he saw my boobs while I was pumping and talking to him one day.)  I'm not sure if he remembered me, or my boobs - but he remembered Kennedy for sure.

Each day closer to surgery, things get harder.  In the beginning, it was months down the road.  We had other obstacles to overcome.  Now when we refer to surgery, it's in *weeks.*  While I can't wait for it to be behind us, so we can start really living our lives, I also dread the day.  I'm not entirely sure how I'm going to get through the next six weeks with out losing my mind.  I wake up completely freaking out about one thing or another.  How am I going to starve my baby the night before surgery?  How am I going to get through saying our "goodbyes" as she goes into the OR?

She had to have blood drawn to check her electrolytes today.  I agreed that we would pay out of pocket just for them to do it at the specialty clinic, rather than having to go to the lab.  Of course, we had been there for almost 3 hours, and Kennedy was over it.  Mommy was over it, and we had both already cried.  I had to hold her, while they pricked her heel a few times and squeezed the blood out into a tube.  It was horrible.  She screamed, and screamed and screamed.  And I cried, and cried, and cried.  If I cried this much at a blood draw, how the heck am I going to handle open heart surgery?

Kennedy relaxing after her traumatic morning (notice the matching band-aids on her heel.)