Wednesday, April 9, 2014

Perfect Timing




Some of you have seen that Emma has been suffering from some sort of respiratory illness for almost two weeks now.  We thought she was just having seasonal allergies, but that slowly turned into an asthma flare which in turn settled into her lungs and has caused a persistent cough and runny nose.  We are so glad that she has not run a fever and that the blood work and swabs are showing no major infection; however, this respiratory illness (whatever it is) has caused Emma to have many sleepless nights, a sore throat (which has led to her refusing to eat), and overall feeling crummy and tired.  We hoped that this illness would dissipate quickly so we would not have to postpone her heart cath/eye surgery; however, that did not happen so we have officially postponed her April procedures. 


Perfect timing....I was hoping and praying that April 22nd was the perfect timing for Emma.  I was praying for a smooth and successful cath/eye surgery that would lead to a future plan for Emma's cardiac care.  However, that is not what is going to happen.  I will admit that I was VERY disappointed.  I have been anxiously awaiting April 22nd.  I have been mentally preparing myself for what was going to happen, but now the waiting game begins again.  My wonderful husband has reminded me that we MUST trust in God's timing for our sweet Emma.  He is in FULL control and has a plan for Emma.  I am trusting in His timing for this procedure whenever that may be, so we move forward and wait.  We are trying to coordinate the eye surgery/ heart cath for sometime mid May.  We are praying for God's perfect timing for these procedures and for Emma's health as we wait. 


In the meantime, we are continuing to work her in therapies and enjoying the new things she learns everyday.  We recently attended the 2nd annual Hearts and Heroes picnic.  Emma only came for a very short amount of time due to her not feeling well, but we enjoyed catching up with the Heart Center staff and fellow heart hero families.


Hearts Heroes 

Emma's Mommy working the MLH Dallas table


Part of our MLH Dallas Booth at the Picnic

Some of the Amazing Heart Center Staff


Emma at the Hearts and Heroes Picnic

These two precious CVICU nurses are near and dear to our hearts

Emma is loving cold dessert treats including chocolate ice cream
Yummy mango Popsicle 

Playing with her silly puppy Max

One more reminder: The CMC Red Balloon Run and Ride is April 26th in Plano Texas.  We would love for Emma's supporters to come to the event and walk, run, or ride for Emma and her buddies.  The cool thing is that if you cannot attend in person, you can be a part of the virtual team.  Please support any way you can.  Sign up under the Hearts of Fire team.  http://www.redballoonevent.org/site/PageNavigator/Home 


Thank you for your continued prayers as we work hard to get Emma feeling better, eating again, and ready for her cath/eye surgery in the near future.

God is Good!  All the Time!  God is Good!  WE TRUST IN HIS PERFECT TIMING!

Sarah 

Wednesday, March 26, 2014

One Month Away




 

It has been a little over a month since I updated our faithful blog followers.  Life has been a very good busy and yet mundane (in the best way).  Emma has been busy with her therapies and living life as a toddler.  She continues to improve and make strides in the right direction.  Emma continues to use her legs more and more.  We can actually see some little muscles forming. J  We got evaluated for a Kid Walk.  A Kid Walk will be a device that will support Emma’s upper body, but will allow her to walk and use her legs more.  It will be approximately 6-8 weeks before she receives the equipment, but we are anxiously waiting for the independence it will provide her.   She is continuing to progress with her fine motor skills.  She enjoys working puzzles, sorting pegs by color, coloring, and most of all, playing with Mrs. Potato Head.  Her new favorite activity is flash card identification.  If she is playing with Grampa then she throws them around, shuffles them up, and throws them again.  However, if she is playing with Mommy or the therapists she has to actually identify the correct object on the flash card.  She is getting very good at this activity and her recognition of the world around her continues to increase.  We have been enjoying the gorgeous weather and taking full advantage of the nice weather days to let Emma go wild and crazy in her “Power Wheels”.  She navigated around the entire block a few days ago.  It is so wonderful to watch her have the ability to get from point A to point B on her own.  So watch out Frisco…Miss Emma is taking her wheels out and about and she sometimes doesn’t stop for obstacles in her way…lol.

 


Medically, the best news we have to share is that Emma’s scoliosis has improved.  She had a great appointment.  Her therapy seems to be paying off.  Her core strength has improved which has in turn helped support her spine.  We are cautiously optimistic that her spine will continue to stable with therapy and that no other intervention will be needed (at least for awhile). 

 

Scott and I were able to get away for a few days in March to enjoy the beautiful mountains of Colorado and do a little snow skiing.  Scott and I enjoyed our time together and our time with the wonderful Abbott family.  Scott works for the Abbotts and we have always thought of them as extended family.  Wolf Creek was absolutely beautiful and the slopes were as fun as ever.  Big thanks to Gramma, Grampa, and Aunt Joni for watching our sweetie pie...and the ornery dog! 

 

We have been mentally preparing ourselves for her upcoming heart cath.  It has been two years since Emma has undergone any procedure that requires anesthesia, so we are slightly (ok, perhaps that is an understatement) nervous about how Emma will do.  The heart cath/eye surgery is scheduled for April 22nd.  The heart cath will give us all a chance to see exactly what is going on in Emma’s little heart.  Dr. Nugent will perform any intervention necessary to help Emma’s heart work more efficiently.  We do not have all of the details on her eye surgery at this point, but will meet with her ophthalmologist soon to discuss what needs to be done to improve her eyes.  Prayers are much appreciated as approach this next major step in Emma’s care. 

 

As always, thank you for caring about our sweet Princess Emma!  She is truly a blessing in our lives and we treasure every day we are blessed with her. 

 

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

 

 

Sarah

 

P.S.  Please pray for our heart buddies Kaleb and Evan.  Both of these cuties had major heart surgery in Boston a few weeks ago. 

Monday, February 17, 2014

The Ramblings of a Scatterbrained Heart Mom and CHD Week Wrap-up

*****I apologize in advance if this blog post seems scattered…random….etc.  I have been so busy living life that I have had trouble writing the words that I thought were fitting to sum up CHD Week and how I feel as a CHD mom at the moment.  Anyways, here it is….

CHD Awareness Week 2014 is officially over, but our job as “heart parents” is far from over.  No, I will not be bombarding my Facebook page every day with CHD facts and statistics, nor will I be arranging big events, attending proclamation requests, doing radio interviews, or asking all of you to participate by wearing red or changing your profile picture to Miss Emma.  However, I live with CHD every day, so really my mission to educate, and drive to keep her alive is a daily task that I perform with pride. 

CHD Awareness week reminds us to take a step back and focus on what makes Emma unique….what turned our life upside down….what makes us advocate for more research and better outcomes.  It allows us to educate our local community on what CHDs are and how to recognize signs and symptoms in newborns.  It reminds us how blessed and supported we are by family, friends, and acquaintances.  It unifies us with local and national support groups and other heart heroes who are all pausing for a week to remember those who are living with CHDs and honor those who have lost the fight. 

So, I thank each and everyone of you for participating in CHD Awareness Week 2014…. for wearing red, posting facts/statistics, donating to CHD awareness groups, changing your profile picture to Emma or another heart hero, and most importantly  for praying for Emma.  I encourage you to donate blood, register as an organ donor, and continue to remember all of these precious children that fight CHD with every heartbeat.












Now to my feelings right now on living with a child with a CHD:

Balance.  We all struggle with balance in our lives, but when discussing Emma it is a constant struggle with balance.  I do not want Emma to be solely defined by her CHD, but in reality her CHD has created a life for her that is different from the norm. But you see, she doesn’t know she is different.  She doesn’t realize she is behind or that her life shouldn’t revolve around multiple therapists a day, a feeding tube down her nose, oxygen at bedtime, multiple meds a day, braces to stabilize her ankles, etc.
I watch her fight every day to overcome obstacles that most children her age conquered two years ago.   She huffs and puffs just pulling herself up on the couch….she gets frustrated when she cannot communicate her wants/needs or go get something she wants.

Balance….but I want her to experience normal.  I want her to attend Bible class, hang out with family, make friends, go to the movies, go out to eat, visit parks, zoos, museums, etc.  Honestly, who doesn’t want “normal” for their child?  That’s what makes living with CHD so difficult….Balance.  How much do I expose her to during viral season?  What if I am exposed to RSV, the flu, the stomach bug and accidentally pass it on to her?  For example, the other day Scott and I were at an event and the person sitting behind us was coughing and sniffling the entire time.  I really had a hard time concentrating on the event because I was worrying about germs were infesting me. ;)  Balance…..letting go and understanding that while it is okay to be smart and careful, it is not okay to not give Emma the chance to live, grow, and experience life.

Truly, God has given us an amazing gift.  Emma smiles through her struggles...she laughs off the pain and she is a constant reminder of the love God has for us.  We are not promised a life without pain, tears, and even heartache, but we are promised an abundant life of Joy if we turn our life over to Him that gives us life...if we follow Him.  This world is not my home...but I will praise Him in the storms! So we continue to find balance in our life, happiness around every corner, and giving our God thanks for every second of every day. God is good...all the time. And all the time... God is good! 



 


Friday, January 31, 2014

Back to the Land of the Unknown



Hello Faithful Blog Followers:

We hope you all have had a great start to 2014.  We have been enjoying many days in the comfort of our no germ bubble (aka our house).  This season is inundated with the flu, RSV, and various other respiratory illnesses.  All of which would wreak havoc on Emma, so we stay fairly isolated this time of year to keep Emma as healthy as possible.  She still sees her four therapists twice a week, so she stays very busy.  Speaking of therapy, Emma has started doing some incredible things in physical therapy.  Right around Christmas, Emma started using our hands as support to stand herself off of her bench.  This is a major accomplishment for a three-year-old who has never put weight through her legs on her own accord.  Then, just within the last couple of weeks, Emma will stand herself off of her bench (using the couch for support) and play with toys/iPad.  We are very proud her drive and strength.  She was just re-evaled for her therapies and made progress in each one.  This is a slow and steady progress for Emma, but we are constantly surprised with the hurdles she is able to overcome. 












Well, it is that time again.  Time to take Emma to the cath lab and have her heart evaluated, function assessed, and pressures measured.  This also means that potential intervention will be done: coiling collaterals, opening up pulmonary arteries, etc.  We know it is time; however, it has been a long time since Emma has been under anesthesia or had any interventions performed on her heart.  To say we are nervous is an understatement.  We are beyond nervous, anxious for the actual procedure and uneasy about the results.  You see, Emma has NEVER (and probably never will be) a straightforward case.  We know from past experiences that her pressures tend to be on the high side.  What does that mean?  That means that she will potentially NOT be a Fontan candidate.  As crazy as it sounds, I long to hear the words Fontan candidate.  I would be overjoyed to set a surgical date for the Fontan because if the Fontan is not an option at this point then what will our path look like?  These are all questions/scenarios that we will be faced with in April.   Scott and I, along with our medical team at CMC, will no doubt have some tough discussions about Emma’s future and the best paths to take to ensure that she has the longest/happiest life possible.  In conjunction with the cath, we are trying to arrange for her to have her eye muscle surgery performed while she is under cardiac anesthesia.  There are a lot of hurdles to overcome before we get this completely worked out, but we are hopeful that we can get this done so that Emma will be able to begin learning how to see with her binocular vision instead of her peripheral vision.  This will help with her depth perception, balance, etc.


So, now that the “heavy” news is out of the way, let’s discuss the next few weeks.  February 7th-14th is CHD Awareness week.  Please be watching my blog for facts, statistics, and my personal point-of-view.  This is the time of the year when I take extra time to educate and spread awareness.  So, what can you do to help us spread awareness:

1.     Change your Facebook profile pic to a heart hero you know from Feb 7th-14th
2.     Wear RED on Feb 7th and send me a pic.  Emma loves to look at them in her
       scrapbook.
3.     Talk to those you know who are pregnant about CHDs and encourage them to      
become educated and have their newborns screened.
4.     Do you like to RUN, WALK, or RIDE your BIKE?  Join us on April 26th in Plano,    
TX:  Sign up at:   http://www.redballoonevent.org   Sign up under the Hearts of Fire Team.  This helps raise funds for the Heart Center at CMC where Emma is treated.  We had an AMAZING team last year and I know we can do even better this year.  Please let me know if you sign up so we can make some plans for after the RACE.   The registration is now open so sign up soon!  


We cannot thank you enough for your constant prayers and support.  Please continue to keep us in your prayers as we head into this next stage of our journey.  Pray for clarity, pray for wisdom (for us and the doctors), pray for good health through viral season, and pray for continued positive progress in Emma’s development. 

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


Sarah


Sunday, December 29, 2013

Merry Christmas and Happy New Year from the Stewart Family


Stewart Christmas Letter 2013

Merry Christmas and Happy New Year from the Stewart Family.  2013 was a great year for our family.  We were able to vacation at Lake Texoma, go to the Great State Fair of Oklahoma, spend most of the major holidays in Oklahoma, watch our precious Emma grow and learn, adopt a puppy, and so much more.  


Emma:
What a great, eventful, fun, wonderful year Emma has had.  Emma has made tremendous strides in her therapy over the last year.  With the help of her dedicated therapists and nurse as well as new medical equipment (i.e.: wheelchair, standing frame, crawler, ankle braces (AFOs), etc.); Emma has gained muscle strength, cognitive abilities, better communication techniques, fine motor improvement, and overall better understanding of the world around her.  She continues to surprise us with her drive to learn and grow. 

Last Winter, Emma contracted RSV which manifested itself as restricted airway disease aka asthma.  This has been an ongoing battle for Emma as she already has compromised respiratory system.  She is on a lot of medication in hopes to keep it at bay; however, the fall and winter months are hard on her and result in intermittent periods of 24 hour oxygen support, full feeds through the NG tube (doesn’t feel like eating), and long days/night of coughing spells.  Emma continues to see an onslaught of doctors for various health issues.  She is currently stable cardiac wise, but will more-than-likely undergo a cath lab procedure this coming summer to help us determine the next steps to take to help her heart.


Sarah:
Obviously, the majority of my time is spent taking care of my sweet Emma.  I take her to all of her doctor appointments, arrange her therapy and nursing schedules, handle most insurance debacles, and most importantly spend lots of time getting snuggles.

I have been working diligently on my PhD.  I passed my qualifying exam last November and officially received my IRB approval this October.  I am currently gathering data for my dissertation at a wonderful private school nearby.  I am enjoying being back in the classroom and watching the darling pre-k class in action.  My goal is to have my dissertation finished before the end of Summer 2014. 

I am also a Coordinator for Mended Little Hearts of Dallas.  I visit heart families in the Heart Center at Children’s Medical Center in Dallas, gather materials for and assemble Care Bags, and help educate and promote Congenital Heart Defect Awareness.
Scott:
My wonderful husband is still working for Pharmcare USA.  He has worked for this incredibly caring company since he was in college.  He is now a Director for Clinical Services.  He travels frequently all over Oklahoma and Texas (and sometimes beyond) to nursing and assisted living facilities.  He truly puts his heart into helping the residents and ensuring that their pharmacy related needs are being met.  I am so thankful for a husband who works so hard to provide for his family.

In his spare time (what little he has), he enjoys running, working out, playing video games (to my dismay..lol), and spending time with his family.  Emma just lights up when he gets home.  He can make her laugh like no one else.      


Max:
Max is the new addition to our little family.  Maximus (Max) was Scott’s Birthday present this year.  He has wanted a puppy for a long time and I finally gave in to his request.  We adopted Max from Collin County Humane Society at 7 weeks old.  They know his mom is a Rottweiler, but his dad is unknown.  Either way, he is going to be a BIG dog.  He has been a joy, aside from the indoor potty incidents and random chewing on things he is not supposed to be chewing on.  Emma likes him more and more, which is a good thing because we are going to be sending Max to school to become either a service or therapy dog in about 4 months. 


We appreciate the continued prayers, support, and encouragement each of you send our way.  We are so thankful for all of our friends and family who make life’s journey easier, more fun, and even a little more interesting J!  We pray that each of you have a great 2014.  Please remember that our purpose on this Earth is to serve HIM who makes our life worth living. 

As always, God is Good!  All the Time!  God is Good!
Scott, Sarah, Emma, and Max