Mighty Beautiful Heart

This past weekend, Alexandra had her first dance recital.  It seems so ordinary for a young girl to have a dance recital, yet it truly is miraculous!  You see, two years ago at this time, Alexandra had just started walking again and was in physical therapy to go up and down the stairs, as her legs had grown so weak during her hospital stay.  So, for us, the fact that she is actually dancing now is amazing!

She has been taking a combination ballet and tap class since September and has done so well.  In fact, just a couple of weeks ago, her teacher invited her to try out for dance team…the only girl in her class to be asked!  We are so very proud of her!

Now that she has friends at preschool, she is finding out about all kinds of other activities that her friends do.  While we never want her to dwell on the fact that she will have limitations, we do need to be realistic.  When she came home one day asking if she could take gymnastics, we simply told her we needed to ask her cardiologist.  We did, and he said she shouldn’t, so we told her that gymnastics wasn’t the activity for her but that she could continue dancing.  That answer seemed fine to her, and she hasn’t asked about gymnastics since.

The fact she was asked to try out for dance team at 4 1/2 shows us that there are activities in which she can excel…it just may not be exactly what all her friends do!

Have you had to tell your CHD child that he/she can’t do something?  If so, how did they take it?

As we approach Father’s Day, it’s hard to believe that two years ago, Alexandra was still in the hospital recovering from her Fontan during what was the most hellacious month of our lives!  Now, two years later it’s funny that my biggest stress has become where to go on vacation!  I know people who have already taken their vacations and many more who have had their vacations planned from start to finish for months now.  We’re still trying to figure it all out.

We could drive to a beach just a few hours away and have a fine time.  However, now that Alexandra’s cardiologist has given us permission for her to fly, it opens a whole new world of possibilities.  That being said, the words “If you fly, be prepared for her to turn blue” spoken by her cardiologist some time ago still ring in my head.  Therefore, if we fly, we would want it to be a short, non-stop flight to see how she tolerates it.  Of course, flying has become such a hassle with all the additional security, plus Alexandra has a couple of compounded medications which require refrigeration, which further complicates airline travel.  While all this narrows down the options, I have still spent countless hours on the internet becoming downright obsessed with trying to find some ideal place that provides everything we want at a decent price.  Every time I come up with one idea, I find numerous reasons why it could present problems.  Most frequently, I think about how quickly we could get to a decent hospital should something happen. 

Last summer during a weekend trip to the mountains, Alexandra got what turned out to be food poisoning on the way there.  At first we only knew that she couldn’t stop throwing up and was showing all the signs of dehydration.  We ended up having to take a 1 ½ hour ambulance ride (in the rain, no less!) to the nearest hospital where she had to be hooked up to an IV.  We spent most of the night there until she was released only to have to drive back 1 1/2 hours to where we were staying in the mountains.  That experience certainly put a damper on the rest of the weekend but also haunts me as I try to plan this year’s vacation!

Of course, while I’m driving myself absolutely crazy over wanting to take her someplace special, the reality is all she really cares about is that she’s with Mommy and Daddy, and the hotel has a pool!

I would love to hear how others have decided on where to go for vacation!

One night while getting Alexandra ready for bed, we started talking about things that happened before she was born.  About the third time I told her that she had not been born yet when something had taken place, she looked at me and said, “Mommy, you would be sad if I wasn’t here!”  Those words rang in my head after her cardiology appointment that following week.

Alexandra has had a leaky aortic valve, but we had been told that after the third surgery it would most likely be better.  For all this time, that had seemed to be the case; however, after this last cardiology appointment, the Doctor said it had gotten worse.  We felt like we had been punched in the gut!  Things had been going along so well and then all of a sudden here we were being faced with the reality that things don’t always go well with CHD babies.   During all of her surgeries, I kept it together, but this time, I had a true pity party for several days.  It was just so disheartening to think of her having any setback after she has been doing so well.

The Doctor increased one of her medications and is hopeful, as are we, that the increased dosage will lessen the leakage so no further action will be necessary at this point.  Unfortunately, we have to wait until July for her next appointment to give the medicine some time to work if it’s going to.  So, until then, we wait and we pray!

Being a Mom exposes you to the greatest extremes of emotions.  This last week, it seems we ran the whole gamut.  Last weekend was the last weekend before election day for my husband’s re-election campaign, so we spent it knocking on doors, distributing his literature.  Naturally, Alexandra was not happy we were leaving her at home so much and, even though she loves those we have watching her, she screamed and cried and hung onto my legs every time I tried to leave.  As I’m sure all other Moms know, this just breaks your heart.  Of course, you also know they will be just fine as soon as you leave, but trying to pry yourself away from them is very upsetting!

Tuesday was election day, and there was a party that evening to wait for the results.  Much to our surprise, she went right over to a little girl about twice her age, and they began to run all over the place hand-in-hand.  Other little girls joined in, and Alexandra had a blast running all around not even caring where Mommy and Daddy were.  When all the winning candidates (my husband included!) got on stage to say a few words, all the little girls sat right in front of the stage.  Our Alexandra then started bossing all the other girls around telling them to lay down on the floor.  When one would sit back up, she would tell them to lay back down again.  They were all giggling the whole time.  While I was a little embarrassed by the display, I also felt a bit of pride that my little 3 ½ year old had such confidence!  When I talked to someone later, I confessed how I had been embarrassed by the fact she was being so bossy.  However, she told me not to worry and that it was better to raise a leader than a follower.  I truly appreciated those words and, after I thought about it for a while, had to agree.  While her antics may be a little embarrassing now, I know she will make us proud with her confidence and persistence in the future.

Unfortunately, Friday she got very sick with a stomach bug.  Surgeries aside, this was the sickest I think I’ve ever seen her.  You hate to see your children sick and wish you could just make it all better.  However, I must admit that I didn’t mind the extra snuggles and quiet time we’ve enjoyed over the last couple of days. 

I hope all you Moms have had a wonderful Mother’s Day!

Recently, Alexandra taught me a great lesson on patience and persistence that I wanted to share.  For her last surgery, I put together a small plastic photo album containing pictures of the most important people in her life so that she could “see” everyone during what turned out to be a month-long stay in the hospital hours away from our family and friends.  Also, after hearing of issues other children have had after this surgery, I wanted to make sure she recognized and remembered all of these people!  She still likes to look through it and points out each person in each picture every time she looks through it.

Well the other night, while I was busy in the other room, she decided it would be fun to take out every picture and throw them all on the floor of her bedroom.  When I saw the mess, I told her she needed to pick them up.  Little did I know that she would lay down on her stomach and actually put each one back into the photo album.  She wouldn’t even let me help, so I just sat there and watched her for the next 30-40 minutes painstakingly put each picture back into its sleeve.  The pages are flimsy, and she would get one corner of one picture in and as she would try to get the second corner in, the first corner would slip out.  At times she would get one in only to realize that she got it behind the divider and would have to pull it out and start over.  I marveled at how calmly she just kept trying until she got all the pictures back into the photo album. 

It made me think about how quickly we all quit things when they turn out to be harder than we anticipated.  We give up on our dreams when it takes longer than we want to wait.  We never know how close we are to reaching our goals because we give up a moment too soon.  I’ve certainly been as guilty of doing this as the next person!  However, I’m making a plan to take a lesson from my three-year old and persevere through whatever challenges are thrown my way until I’ve done what I want to do!

As you may have noticed, I have taken a bit of a hiatus over the last couple of months getting used to working outside the home again.  For the last few years, I was able to work from home in our own business, which was a true blessing given how much we had to go through with Alexandra.  (At times, just getting her to all of her doctor’s appointments seemed like a full time job not to mention being away for weeks up to a month for surgeries!)  However, for a number of reasons, I decided to look for employment and was lucky to have found a great place which allows me to experience all that I was missing by working at home but still allows me enough flexibility to spend time with my family and continue working in the business.

As I’m sure many other mothers would agree, going back to work was not the hard part.  Finding someone I trusted to care for Alexandra, however, was!  We are fortunate enough to have mothers in the area who take care of her two days a week, but we had a real dilemma as to what to do the other three days.  With the big H1N1 scare back in the Fall and in consultation with all of her doctors, we decided we really needed to have someone come to the house.  We spent months looking for someone and found a terrific young woman to cover for a few weeks when I first started my job.  We kept searching, knowing that she would be going back to school.   Finally, we found someone who shows up on time each day, and Alexandra seems to really like her.  Still, we wonder if we made the right decision.  I guess you’re never 100% sure.

Alexandra is certainly ready for preschool which brings us to our next hurdle…finding the right environment for her and deciding when to start.  Over the next couple of months, we will be looking at options and deciding what’s best for her.

I would love to hear what other Moms have done and how they selected the best care for their children!