One month later

It's hard to believe that it is already one month later....one month since the day that we sent Allison into surgery.  Honestly, it feels like a lifetime ago.  As I thought of what I would write today, it brought me back to Allison's first birthday.  Just like on Allison's first birthday, this first month post surgery brought with it a wave of emotions.  These are the days of remembrance that you anticipate long before they even come.  It's impossible to not go through the day thinking of what we were doing one month or one year ago at that very moment.  The events of those days leave such an imprint on your mind and heart that it's impossible not to reflect on all of those moments.  While many of those memories bring great heartache, I can look at these days and remember those moments, but see each of those moments as one we have overcome and therefore, a moment to celebrate and feel the blessings that are in our lives as we are given the opportunity to enjoy another step forward.  Each and every day, I look at Allison in complete amazement at the wonder before my very eyes and I see the true blessing that has been given to me to hold, love, and cherish.  So today, we celebrate how far we have come in one month and we look forward to all the wonderment and blessings that lie ahead for this special and amazing little girl. 

Surgery Day (5.12.14)

One month later! (6.12.14)

And since I mentioned Allison's first birthday, here's a little look back to that memorable and special day.

Allison's 1st Birthday (3.12.13)

The long awaited outing

It's been a week since we've updated and what a week it has been.  For Allison, the big excitement of the week was the long awaited outing that she went on today.  For others in the house, it's the fact that summer has officially begun with the ending of the school year and the fun and relaxation of the summer ready to begin.  For myself, the beginning of summer always means the seemingly endless days enjoying all the small moments with my family creating some very special memories.

But back to Allison....so what was the big outing?  Her first trip out in public was getting to go to her brother's baseball game and then on to her sister's softball game.  Not too exciting one would think, but as soon as I said we were "going bye-bye", she started jumping up and down with excitement.  I don't think she cared where the trip would take her....she just couldn't wait to get out of the house.

Other than traveling to the houses of a couple family members and friends, Allison has not yet been able to be out in public.  Getting sick at this point would be tough on her recovering heart, so it's pretty much kept her at home.  Also, because of one of the meds she is on, she can't be out in the sun, so our summertime outings are pretty limited at this point.  But we continue to be thankful for her continuous steps forward in her recovery and look forward to many fun and memorable moments here at home and hopefully in the next couple of weeks, to include those moments that stretch beyond our home.  Looking forward to a wonderful and healthy summer!

Exhausted after a big day!

The journey continues

On Thursday and Friday of this past week, we had doctor appointments to follow up from the surgery and to see how Allison is progressing since we've been home from Mayo.  Being back at our home hospital, Hope Children's Hospital, the journey continues.  We truly feel as though we have been surrounded by some amazing doctors along the way and feel the blessings of such wonderful care for her as she continues on this journey.

All ready for our visit to Hope

Allison has become quite the little patient since the trip to Mayo.  She is now easily able to distinguish between the tests that will bring with it some pain and those that won't.  Allison readily sticks out her finger for a pulse ox and lifts her arm for a temperature and blood pressure, yet will dissolve in tears and protest at the site of the stickies of the EKG.  What goes on, must come off....and she remembers that all too well.  And when it came time for the echo, she knew it was TV and treat time, and settled in for the hour long test.  Our little heart warrior continues to amaze us each step of the way.

This is easy!

Another easy test!

Not so sure about this!

T.V. and treat time

So relaxed!

Some entertainment while we wait

More bubbles!

And the update:  The cardiologist at Hope that has followed Allison since birth, had many positives to share after reviewing the results of the day's tests.  The repair is continuing to hold and, as said by the doctor, the right side of the heart is smaller and happier.  What wonderful news to hear!  There were a couple of small concerns that the cardiologist addressed that will bring us back up to the hospital earlier than we anticipated with another visit in a couple of weeks, but we hope and plan to hear more promising news about those things at our next visit.  And for now, we celebrate that her heart is in a happier place and that she continues to make steps forward.  We couldn't be more pleased with the progress that we are seeing as the journey continues.

Happy to be done!

The purpose of a blog

About a month ago, I started this blog to keep people updated on Allison’s progress leading up to, during, and following her heart surgery at Mayo Clinic.  While this purpose will continue to be fulfilled and I look forward to continuing to share her journey with you, I have also been reflective about other benefits that have come from and will continue to come from this, leaving me to look at the purpose of a blog.

The original purpose of this blog was to keep people updated on Allison’s progress.  So, I’ll start by sharing her progress since we’ve been home.  We have been home almost a week now, and boy, what a busy week it has been!  We cannot be happier to be home.  Although extremely busy, I am so grateful that my business involves taking care of Allison and her needs and at the same time, managing the activities of the other kids.  Allison continues to remain homebound in our attempt to keep her healthy as she continues to recover from surgery.  We had a scare a few nights ago when her heart rate suddenly dropped really low, but thankfully, the on call doctor at Mayo was able to walk us through some medicine changes that helped to get things back on track.  The doctors and nurses at Mayo Clinic continue to impress us!  At the end of this week, we have a couple of follow up doctor appointments to see how Allison is healing and progressing.  We are most excited to see her cardiologist up at Hope Children’s Hospital and are hoping and planning to hear that she continues to make great progress.  We’ll let you know!

Happy at Home!!

But, as I look back at the previous posts, I can’t help but see other purposes of this blog surfacing.   I am extremely grateful to have a record of this part of our journey with Allison.  The day of surgery and the days of recovery that followed are a bit of a blur to me.  There was so much going on and we had so much information being given to us, that without these written reminders, I would have a hard time remembering and sharing all that we have been through.  For us, and more importantly for Allison to be able to go back and read one day, my next several posts are going to be taking a closer look at the important events of these past several weeks.

Connected to this is another purpose that this blog can serve; a connection to and support for other heart moms.  Over the course of the past two years, I have met some amazing and wonderful people who have been such a great support to me.  Walking a similar path, we have cried, worried, laughed, and grown together.  They have been the people that can understand like no other, because their own journeys parallel our journey with Allison.  Some of my best heart mom friends are going to be embarking on this very same or similar trip in the upcoming months and years and I am just hoping that my sharing of Allison’s story will help them and will provide them with some comfort and answers as they travel this difficult road.  I know how much I have relied on those that have walked before me and with me down this path.

So while I started this blog to share a piece of Allison’s journey with all of you, I am also excited to see the purpose of this blog grow....hoping that her story can touch the lives of others.

Our Trip to Mayo: To Be Together Again

There is nothing better than to be together again.  We are officially home as of Wednesday night.  After two long weeks and an uneventful ride home, we are finally all together again.  After saying goodbye to the Ronald McDonald House early that morning, we headed out for the eight hour drive home.  Needing to make frequent stops for Allison, we had opportunities to enjoy the beautiful day.

Ready for the ride.

We're going home! Big smiles!

The best moment of the day was pulling into our driveway, greeted by the smiles and laughter of our other kids.  To step back and watch the happiness all around us was truly a blessing.  Such a wonderful moment!

Big hugs!

More hugs!

Back with my best friend!

Such a wonderful thing to be together again!!

Our Trip to Mayo: Answered Prayers

Over the past two weeks, Bob and Amy have continued to feel the unbelievable support and never-ending prayers from all of you.  Today was a day of answered prayers.

All ready for my appointments!

After long waits, great appointments, and a final visit with the surgeon, Dr. Dearani, it is official. They can come HOME tomorrow! Yay!!

As they learned from the surgeon today, it will take one to two years to determine the full effectiveness of the surgery as they watch the overall function of the right side of the heart and how it adjusts to the changes from the surgery.  Initial reports look promising!  The cardiologist at Hope will frequently monitor her progress and will send information to the cardiologist at Mayo. The surgeon said there are a few heart defects that Mayo follows closely over a patient's lifetime and Ebstein's Anomaly is one of them.  Amy and Bob were very happy to hear that, as they have been very impressed with the doctors' knowledge about Ebstein's.  In addition to their visits to Hope, they will go back to Mayo for follow up at one year post-surgery. They continue to feel so lucky and blessed to be receiving the best care possible for Allison.

I'm going HOME!!

As they start the next part of their journey with Allison, Bob and Amy could not be more thankful for your continued support and prayers.  They are confident in the lifetime of blessings that lie ahead for Allison that will come from those answered prayers.

Our Trip to Mayo: While We Wait

Today was day two spent at our home away from home.  Two days together while we wait....wait to get the wonderful words that we can head back home to Illinois.   I will start by saying that tomorrow afternoon we have several appointments; one of them being with the surgeon that will hopefully give us the word that it is time to take Allison home.  We couldn't feel more blessed that Allison has had the opportunity to receive the best care possible and we would do it all again for her to be here at Mayo, but we are so ready to be home.  We can't wait to get home to see Megan, Robert, and Kayla and all of our family and friends.

Waiting for us at home

While we cannot wait to return home, we have also cherished this time with Allison.  There is not a moment that goes by that we are not counting our blessings for the amazing moments we have with her....for all the little moments.  Since, once again, Allison cannot be out in public for fear of getting sick while she continues to recover, we have spent the last two days together at the Ronald McDonald House.  Although we have seen amazing improvements, Allison is still very tired from surgery that was just a week ago today and she understandably continues to struggle with pain.  She is on a round the clock medicine schedule that continues to maintain her heart function and provide her with pain relief.  As someone jokingly said to us, it's like bringing home a newborn baby; lots of crying, waking up through the night, and awkward holding since we can't pick her up under her arms until she fully recovers from surgery.  And through all these moments, we know how truly blessed we are that she is here with us and recovering so well.  With pictures, we'll give you a little glimpse into our days here while we wait at the Ronald McDonald House.

A walk with Dolly and Kitty

 

A favorite - snack and a movie

Playing my favorite games

Naptime....again!

Sharing a little smile!

Fun in the Playroom

Coloring time

Just enjoyed my 1st real bath

Another short walk

More fun in the playroom