Celebration Just Around the Corner

We have been talking a lot about Hailey's upcoming birthday.  Most of the time, if we ask her old she will be and she will answer "4" and grin from ear to ear.  She keeps asking us to sing the "birthday song".  Dad will indulge her more than mom :-)  At the end of the song, she always pretends to blow out candles.  I don't think it fully hit me until tonight while I was wrapping presents.  My baby is turning 4 in two days...the little girl who was so frail, tiny and sick...who is now so healthy, strong and full of life.  It's hard to wrap my head around it.  I know that some people might think I'm crazy to get so sentimental over a 4 year old's birthday, but it is difficult not to.  There is a good possibility that she would not even seen her 2nd birthday without open heart surgery and her she is turning 4!  She's my last baby and this will be the last time we will celebrate 4 :-)

It is also difficult for me to grasp the little person we have in our lives.  She isn't what I thought we were going to have.  The wave of fear that washed over me when the doctor uttered those two words "Down syndrome" brought images and stereotypes of what I thought Down syndrome looked like, what it was.  I laugh at those now.  She doesn't fit a single one of them, but neither does any person I have met over the last four years with Down syndrome.  I thought she would be the wall flower in the corner of the room.  The only way she would be in the corner now is if she is in time-out!  Wallflower...she definitely is not!  She wants to world to notice her and loves attention. 

The first night, the first 12 hours of her life, I questioned "why God"?  "Why us?"  "What did we do wrong?"  I still sometimes ask "Why God?", but in such a different way.  Not out of sorrow or anguish, but out of pure shock and amazement.  How did we get so lucky?  Why did God chose to give us this wonderful gift?  This little girl that lives life to the fullest.  This perfect little person that has made us appreciate so many more things in life.  She has brought so many wonderful people into our life that we never would have met before and some of them are in our own community.  Why can't everyone get this lucky?  What on earth did I ever do to deserve her (or her brothers)?

The day before open heart surgery

A few weeks ago, a friend and I were talking about miscarriages.  She happened to have one between her 2nd and 3rd children as well.  I told her how quickly we became pregnant with Hailey afterwards and without missing a beat, she said, "God didn't make a mistake with Hailey, did he?  He had her ready for you.  He wanted to make sure you were ready for her."  I turned my head so she wouldn't see the tears forming in my eyes.  I've always thought that, but it made my heart happy to hear someone else say it. 

Every holiday with Hailey seems to be better than previous one because she gains so much more understanding and gets so excited.  I'm positive this birthday will not disappoint.  She has requested cupcakes, cake, chocolate, presents and Elsa!  I can't wait to celebrate with her!!

Who wouldn't want to celebrate with her?

Repaired...Strong & Beating

We have been fortunate with Hailey...other than her rough start into the world and her heart defect, she has been relatively healthy.  Yes, she has more doctor appointments than the boys, but other than her eye appointments, the rest are just annual check ups.  The first of the year always brings a new round of visits.  Today was cardiology.  I am well aware of the signs and indicators of congestive heart failure....the coloring, the decrease in activity, difficulty breathing, struggling to eat, chest collapsing when breathing...it is how Hailey looked those first 4 1/2 months of life.  She does not have a single sign of heart failure.  Even without those symptoms, her annual cardiology appointment brings me great anxiety and lots of fear.  What if I'm missing something?  What if the repair didn't take?  What if there is something else wrong?

This morning, Hailey and I trekked out in the snow.  Some would ask, why didn't I change the appointment.  Hailey's specialties appointments are scheduled 6 months ahead of time....you don't cancel or change unless there is a major emergency!

Hailey seemed to think the entire day was an adventure.  We got out of the van and she exclaimed, "Snow!"  Yes, Hailey...I see all the white stuff.  "Hurry, mom, cold!"  We stomped our feet at the door and headed in.  The one thing I LOVE about our cardiology department...they are ALWAYS on time and we never wait.  Height and weight looked good and Miss Independent cooperated and we were on our way for EKG.  That's where we hit a snag.  I had talked to Hailey about her upcoming appointment this weekend.  I reminded her about the stickers they were putting on her body to check her heart and she replied with "check heartbeat".  So she "knew" what was coming, but Hailey doesn't like a lot of stickers of any sort.  One sticker or one band-aid is this child's limit.  8-10 of them puts her over the edge (actually it took 3 years before she would even keep a Band-Aid on!).  Child Life Specialist to the rescue with an ipad and apps that aren't familiar.  EKG was over shortly after the last sticker was placed on her little body.  The tears cleared up and we had "tea" while answering the nurse's list of questions.

See last year's reaction...she wasn't a fan of the EKG then either....

Seriously, Mom...a picture..now?

Oh wait...what's that on your iPad?

Would you like tea, cheese, chocolate or salt (not sure where the salt came from but she kept offering it)?

Yummy, yummy

Just like that...tears are gone and all is well again.

Within minutes our cardiologist was in the room chatting with Hailey.  I love our cardiologist.  She has always been very open and honest.  She has always spoken to us and not at us.  She always acknowledges Hailey and doesn't speak down to her.  She doesn't baby talk...she speaks to Hailey as a 4 year old....Ds or not.  Hailey generally attacks the doctor's jewelry...today it was her stethoscope.  Hailey checked the doctor's, mine and her own heartbeat before her exam began.  The doctor said Hailey's EKG looked good and her heart sounds great.  She said we do need to have another echo conducted at some point.  She asked if we knew of any procedures that Hailey needed.  I mentioned that we were going to have a sleep study done sometime over the next year.  I explained that our ENT "released" us from his care and I was searching for a new one.  She replied with a simple, "Yes, please".   She said that Hailey might need her echo sooner if they decide to remove her tonsils, but otherwise...we will go back in 2 years!!!  How exciting is that?!!?!

Hailey will never be released from cardiology for good, but how fabulous that she is doing so well that we don't go back for 2 years!!  Thank you God for the advancements in medical technology!  We braved the cold back to the car and Hailey yelled at me "Hurry, home.  Daddy, Brayden, & E."  Yes, Miss Bossy Pants!  We made it home safely...everyone back in their pjs for a cold, snowy President's Day.

Happy Monday to all!

Huge Friday!

Last year on Valentine's Day, Hailey and I were invited into her class to join her classmates.  She was going to be starting in the class in two weeks and her teacher wanted Hailey to join in to get accustomed to the classroom and students.  She seemed so tiny and she was very apprehensive with all the bustling and commotion.  I suddenly panicked.  Was it too soon to send her to school?  Was she not ready?  What would I do?  I pushed those fears to the back of my mind and sent her to school anyway...a mere 24 hours after she turned 3 (months earlier than either of her typical, big brothers did). 

I have been happy with that decision.  I'm glad I didn't give into the fears.  We faced them head on and Hailey has flourished because of it.  Yes, she is a little mischeivous every now and then.  Yes, she has tried to run a few times.  Yes, she can be defiant at times.  Yes, she has been known to throw her glasses or remove her shoes and socks at times.  But she is learning!  She knows all her classmates.  She engages with them.  They play together.  Her fine motor skills are improving as well as her speech and her gross motor skills. 

Hailey painting with marshmallows

Sensory play - which she will NOT do at home!

She loved the hot chocolate a little TOO much!

This day she said "chocolate" about 500 times and smelled like chocolate, too!!!

Some days it is difficult to fully grasp how much Hailey is learning.  How much she is retaining from her classroom.  She isn't like a typical preschooler.  The boys would come home and give details about their days at school.  They would tell me what they had for snack, what they did at recess, who they played with and what they learned in school.  With Hailey, you don't get that.  Most days, I don't even get an answer to "Did you have a good day, today?"  It's hard.  I feel like we are going at this clueless.  Little by little, we get a glimpse to what Hailey is learning and how she is doing. 

She will identify all her colors one day or all her shapes another day.  She counted to 8 for me last week.  She will identify a letter her or a letter there.  She identified 9 at school last week.  It's slow and sometimes just when I'm beyond frustrated because I can't tap into her brain and figure out what she's thinking or what she's learning...she blows me away.  Today is one of those days!

In Hailey's preschool, a parent can either attend the Halloween party or the Valentine's Day party.  I was able to attend today.  The class was divided into groups and they worked through centers.  One of the centers was decorating a Valentine monster with stickers.  Her speech therapist reminded her to write her name on the back of it.  One by one, Hailey listed each letter in her name and then drew them.  To most people this will look like scribbles, but each letter is there and she knew what she was doing.  They aren't in a row yet and she doesn't pick up her writing utensil after the letters (which is why is looks like scribbling)...but she knows them!!!!!!!  I honestly wasn't sure if she would be doing this at the end of next year before going to kindergarten!  I'm not sure her speech therapist saw the tears in my eyes or knew that I cried halfway home.  It makes me wonder what else she knows and we just need to figure out how to get the knowledge out!  I am so proud of my little girl.  The obstacles she has overcome and the ones she overcomes every day....she does everything with a determination and a smile on her face (on most days)! 

Most people will see this as a bunch of scribbles.  I circled them but I can't remember were the "I" is. The top right is an H.....top left is her A....I forget where the I is...L is the bottom left...lower case "e" on the bottom right and her Y is in the middle. She told us the letters as she wrote them.

Each Year Gets Better!

I can't believe it has taken me this long to blog about Christmas...I'm only two months late :-)  Every year, I say this one is my favorite and this past Christmas is no different.  It was so much fun!  We always celebrate with the kids a few days early before we head to Indiana to visit family.  The kids enjoy it because they get presents early and this way they have a day to spend with their new gifts before leaving for a week.  The boys are 7 and 11 so they had their wish lists and tried guessing everything before opening.  They proceeded to tear into the paper like animals.  Hailey was the complete opposite.  Everything was a surprise.  Everything was her favorite item.  It is official though...she is the SLOWEST gift opener I have ever seen.  We aren't sure if she was afraid of tearing the wrapping paper or what...but it was painful and comical all at the same time.  It was the first year that Hailey unwrapped all of her gifts and helped her brothers with theirs.

Hailey loved Santa again this year!

The three of them is always a hard pic!

Loved her facial expressions!!!

Ian was responsible for her beloved sing along.

She still loves Frozen...singing Olaf!

The weekend prior my garage door failed to raise all the way up and I didn't notice it...I backed my van into the door.  Needless to say, it damaged the door and my van....sigh.....  Our trip to Indiana to visit family proved to be equally eventful.  Christmas Eve my husband's car was backed into and then two hours later...I locked my daughter in the van.  Poor thing!  I felt so horrible.  She wasn't happy because she was strapped into her car seat.  Thank goodness for AAA (and the fact that a child locked into a car is a high priority situation!).  The remainder of Christmas was uneventful.  Jason had to head back to work on Christmas, but the kids and I stayed a few extra days to visit with family. 

She always has her Mamaws read to her.

Princess shoes...first thing she saw and that was all she needed.

Modeling her new shoes.

Are these all mine?

Look, mom, boots!

Can't wait to see how much fun she has next Christmas!!!

Strong Beating Heart

I couldn't let Congenital Heart Defect week pass without a new blog post.  It's been awhile since I've posted...not because of lack of thoughts, but I'm having a difficult time getting some of those thoughts written.  February brings a great deal of emotions to this mom.  Hailey's birthday is at the end of the month, Hailey has a cardiology follow up every February and February 7-14 is Congenital Heart Defect Awareness week.  Obviously, all three of those events are a big deal in our lives.

At the beginning of the year, Hailey had a doctor's appointment.  We had a new nurse and she asked if Hailey had any surgeries.  I shrugged and replied, "no".  A few moments passed and I was confused with myself.  How on earth did I forget that Hailey had open heart surgery?  How did something so major slip my memory?  How could I have forgotten that my daughter would have died without it?  How I could I forget watching my daughter's chest raise and retract like she didn't have enough energy to breath? How could I forget the 7 hours a day that we would spend feeding her because she didn't have enough energy to breath and eat at the same time?  Hailey probably would not be with us today, getting ready to celebrate her 4th birthday, without that surgery.  How could that be forgotten in just 3 short years.

It was all I could eat and breath for those first 4 1/2 months of her life.  Watching her breathing...watching her coloring...praying that she would have enough energy that day to eat and breathe.  Rubbing her fingers and toes to get the blood circulating again.  Praying that she was getting big enough to schedule her surgery.  Praying every waking moment and probably during my sleep.

The crazy thing is Hailey's surgery was a simple one (relatively speaking).  She definitely wouldn't have lived without it, but it was an easy fix and a common defect.  We left Hailey in the CICU hooked up to machines, IVs and not awake yet...she was healthier at that moment than she had ever been in her life.  Her heart was fixed and her little body didn't have to work so hard.  She could eat and breath at the same time and it didn't exhaust her.  Her first bottle post surgery only took her 10 minutes to finish.  It was the first 3 ounce bottle she had ever eaten and it took her 50 minutes less than normal.  I was speechless.  We were able to live after that.  We didn't have to schedule our entire life around Hailey having a bottle.  Our family was going to get a chance at a new normalcy. 

I will never forget the pain...the fear...or the pleading I did with God, but it's easy to shove it in my box of memories and live our life with our very healthy, active, almost 4 year old!  Thank God for medical technology, skilled surgeons and caring professionals for giving Hailey her second chance at life.  I can assure them all that she's living it to the fullest!