Long Overdue Update...You don't Want to Miss the Zoo Pics :)

Hey everyone!  Just thought I would give a little update as to what our sweet girl has been up to lately!

First, Emma recently went to the zoo and had a blast!  She got to see a ton of animals and even got to feed the giraffes.  I wasn’t able to go with Sarah and her mom to take Emma (I was extremely sad about this!!) but Sarah was able to send me some amazing pictures and a video of her feeding the giraffes.  So glad my big girl got to see all of this and have this amazing experience!  Lots of pictures, but I think they tell her experience so well.

Zoo Fun Video

Secondly, we thank God for the improvement we saw on Emma’s last Scottish Rite appointment.  Her lower lumbar scoliosis improved from 35 degrees to 24 degrees just in this short time she has been able to wear the brace.  Sarah and I consider this a huge victory because as one might imagine, this brace is no fun at all for Emma.  But, she has been amazing at tolerating a lot of hours in it.  We will continue to have her wear it and reevaluate in months to come.   Praise God!

Emma in her brace...We don't get many smiles when she has to wear her brace :(

Third, we give praise to God for her improvement in communication skills!  She has recently been doing and amazing job with communicating with Sarah, her therapists, and me with her song cards.  We give God the glory for all that He is doing in her life right now and to come!

Emma also has a new wheelchair.  While she is not maneuvering it herself yet, she is definitely enjoying some rides around the block.  Our hope is that this allows her more independence in her movement.  

Emma's Power-Wheels Video

Emma's cardiology appointment went well.  Her labs looked good and we are continuing to watch a collateral vein that has formed and is "stealing blood".  At some point, this will send Emma to the Cath Lab, but we are holding off for now because her oxygen levels are "good" for her and her heart function remains stable.

As always, God is good, all the time.  And all the time, God is good!

Scott (Daddy)

It’s All About Perspective

This past Saturday was the first annual Hearts and Heroes picnic.  This picnic was put on by the HeartCenter at Children’s Medical Center. All children who had heart surgery in the last two years were invited.  I was honored to sit on the committeefor this event due to my participation in Mended Little Hearts of Dallas. The Heart Center staff worked tirelessly to make this a fun event forthe heart heroes and their families. We could not have asked for a more gorgeous day on Saturday.  We got everything ready to go onSaturday morning and began welcoming some familiar faces to the picnic.  This is where things got interestingfor my little family….

You see, Emma does not care to be around a lot of people,especially people she does not know. But, before I get into the details of Emma’s picnic experience, let megive you a few examples of what the title of this blog is all about….

Truth: Emma is two and is not mobile in any way(not crawling, scooting, walking, etc.

My Perspective: Emma spent a year of her lifefrom birth on in the hospital. Emma suffered with hypoxia (low oxygen levels) for a long time and beingintubated for ½ a year.  EMMA ISALIVE!

Truth: Emma becomes easily overwhelmed withpeople and situations in
which she is unfamiliar therefore, sheshuts down and cries a lot.

My Perspective: Emma has been poked and prodded on her entire life, but nowthat she has been away from the hospital for awhile she prefers her bubble thatwe live in most of the year therefore, anything outside of that is scary toher.


 Truth: Emma is classified extremelydevelopmentally delayed.

My Perspective: Emma is a happy little girlwho has been through more in her little life than most will go through in theirentire lifetime.  No, she is not a“normal” two-year-old.  In fact, Iwas reminded on Saturday that she is really behind in heart kiddo standards aswell.  However, I am trying my hardestto not put Emma in a box. 

Truth: It is EXTREMELY hard to watch Emma not enjoyingthings that I think children her age should be enjoying.

My Perspective: I fight the urge to push her to "like" situations that I think she should like.  I want normal for her.  I want her to enjoy the same activities that other two-year-olds enjoy.  Running around acting crazy....I fight this inward battle on a daily basis.  

So, back to the picnic.  Emma recognized a few people and gave them smiles; however, the outdoors made her allergies act crazy.  She did not enjoy the windy weather.  She did not enjoy all of the people coming up and trying to touch her.  Emma broke down and cried and cried.  She wanted her mommy and I was trying to run the Mended Little Hearts table.  All of those factors made for a very cranky baby (come to find out she is also cutting two molars).  She did not get her picture taken for the Heart Center bulletin board or put her sweet little thumb print on the painting.  She did not play games, or run around playing with the other kids.  If I am being honest, this was hard to watch.  I can make excuses all day and say that it doesn't bother me, but it does.  I am working on these thoughts.  I am working on accepting Emma for who she is....having no unrealistic expectations...and being truly thankful of who she is today because you see, as soon as she got home she started smiling, laughing, and being the sweet natured little girl that we love so deeply.  And more importantly,  Emma is HERE!    

My little family at the Hearts and Heroes Picnic

MLH of Dallas Coordinators at our table

This CMC Heart Team is Phenomenal!
They gave of their time to show these kiddos how important they are.  

Thank you all for being a part of this journey with us.  Thank you for bearing with me as I learn how to live our new normal.  Bear with me if I act frustrated or disappointed in situations in which we are around "normal" kiddos and Emma is not able to participate.  Pray for us to embrace Emma for who she is, and what she is able to do.  

As always, God is Good!  All the Time!  All the Time, God is Good!

Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matt 6:34 NIV

I can do all this through him who gives me strength.  Phil 4:13 NIV

Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.  Isaiah 40:31 NIV

Some Prayer Requests:

1. Emma is still dealing with significant pulmonary issues and will see the pulmonologist on April 16th.

2. Emma will get her scoliosis brace on April 16th as well barring her pulmonary issues subside.

3. Emma is not participating well in therapy, so we will be trying new tactics to get her want to participate properly.

4. Emma will see her cardiologist and nephrologist this month as well.

5. Pray for all of our other heart buddies fighting their battle on a daily basis.  

       

See, here is that sweet smile.

Emma's Heart Hero Cape!

Emma in her cape and picnic shirt.  She is happy, happy, happy now that she is in her environment.  

Hippity Hoppity Easter's On Its Way!

Happy Doctor's Day

Happy Doctor’s Day!

We have been very blessed with the medical staff that has been a part of Emma’s journey.  Once we established (to the doctors) that Emma was worth fighting for, we found a team that agreed to help us in that fight.  I seriously doubt that any of her doctors read Emma’s blog; however, I will briefly write a small synopsis of what each of the “main players” mean to us.  If they read it, I hope they see how much of a difference they have made in Emma’s life.  If not, please read of the selflessness these doctors show on a daily basis.    

Dr. Forbess: 

Oh Dr. Forbess, words cannot truly explain how much trust we have in you.  I know how unique Emma’s case has been, and I know that she has presented her fair share of challenges, and yet each time you have taken her into surgery, you carefully/skillfully cut open our precious daughter’s chest and work tirelessly to try to take an imperfect heart and make it work perfectly for our little Princess.  We appreciate how passionate and methodical you are before, during, and after surgery.   We have enjoyed getting to watch you perform your art like only a skillful artist can.  Also, thank you for expressing your appreciation for the work our MLH of Dallas group is doing.  It means a lot that the Chief of Pediatric Cardiothoracic Surgery notices and is grateful for what we are doing for the families at CMC.   

 

Dr. Matthew Lemler:

You were one of the first doctors we met at Children’s Medical Center of Dallas.  You knew Emma before she even arrived.  You knew she would present great challenges and were extremely honest with us about what we were about to face.  In fact, your honesty is probably one of the qualities that we appreciate the most about you.  I don’t know if you remember, but out of the six cardiologists that saw us prenatally, you were the one the stopped by Emma’s CVICU room regularly to check on her and on us.  Those qualities were why we asked you to be Emma’s primary cardiologist.  You have helped us through so much and have monitored Emma so closely to give her the best chance possible.  Don’t worry, I won’t tell any of the other patients that we are your favorite…;) ha ha! 

Dr. Josh Koch:

One of the first memories we have of you is not one of our best, but it helped us gain respect for you and your responsibilities.  The first terrible night that Emma crashed: you had left for the day, but came back and worked calmly and patiently (even though I thought you were working too slow) with the fellow to determine what to do in order to get Emma back to a stable place.  After that, our respect and admiration for you grew and grew.  You calmed me down multiple times and truly listened to our concerns when we felt like no one else was.  But probably the act that means the most to us is when you offered to pray with us before Emma’s Norwood.  Your compassion and willingness to work with families to make the CVICU a truly family centered care unit is bar none.    

Dr. Nugent:

You are the very first doctor to perform a procedure on our dear daughter.  Little did either of us know the journey we would all take together?  You did an impeccable job day one of opening up Emma’s intact atrial septum.  You gave her the opportunity to live another day and for that we are thankful.  We trust you above all others in the cath lab with Emma even though she can be extra ornery for you.  You have added humor to our lives when we needed it and take time (even if you don’t have a lot to give) to explain everything that is going on and how it relates to Emma specifically.  We adore you just as much when you are attending in the CVICU.  Thank you MATE!    

Dr. Sarah Troendle:

I do not think I ever truly understood the value of a great pediatrician until Emma came along.  We had trouble finding someone that even understood Emma’s complex health issues.  When we heard about you through a fellow heart buddy we were very excited about the prospect of finally finding someone who could understand Miss Priss.  Once we found out that you had trained at CMC and knew Emma’s cardiologist well then we knew it was the perfect fit.  You have such a compassionate spirit.  Your kindness, empathy, and thoroughness mean the world to us.  You always take the time to give Emma the medical attention she needs and are constantly advocating for her needs.    

There are many other doctors (Dr. Clay, Dr. Green, Dr. Wolovits, Dr. G, etc.)  that I could list, especially those in the CVICU that worked so diligently on Miss Priss during her year long stay.   You are appreciated more than you will ever know.  Thank you for giving of your time to help “fix” our little one’s broken heart. 

HAPPY DOCTOR”S DAY from the Stewart Family! 

Emma when she was practicing to be a doctor!