Thursday, July 3, 2014

So...What's the Hold-up


I have started and stopped this blog so many times it's not even funny. Not that I don't know what to say necessarily, it's just that life has been busy and this is not been at the top of my priority list. Also, to be honest, I am frustrated. I'm ready to have this done for my child and I'm ready for us to get to continue our lives as usual without being in isolation.

So, many of you are probably wondering exactly what happened during the cancellation of Emma's procedures.  Here is a not-so-brief rundown. 

It  was a couple of emotionally and physically draining days. We are still trying to process everything and doing our best to get Emma scheduled as soon as possible for the next attempt at the heart cath and eye surgery.

That Tuesday morning we went to Emmas ophthalmologist for preop.  It was a very short appointment and we had an idea of what would be happening Wednesday morning with her eye surgery. We learned that he would be working on both eyes to work on vertical and horizontal muscle alignment.

We then headed to children's medical center to meet with Dr. Nugent and the heart team. We get there and are taken into the room at that heart clinic to wait to meet with Dr. Nugent. We were told it might be a while because there were some emergencies that had occurred in the Cath Lab.

 Dr. Nugent's PA came in to discuss with us what was going on. He said that due to the number of unforeseen emergencies both in the CVICU and in the Cath Lab he did not know if they were going to be able to make it work for Emma's procedure the next day. We asked to speak to Dr. Nugent and Dr. Lemler before we made any further decisions. Dr. Lemler spoke with us and was not optimistic that it would happen due to everything that was going on. He was very upset that it wasn't going to work but said he had a room for us upstairs on 8 if we needed it.

We waited for quite a long time to meet with Dr. Nugent. When he came into the room I could tell that it probably wasn't going to happen. He told us that he had done everything in his power, but unfortunately due to the abundant amount of emergencies and unforeseen procedures that were occurring in the heart center..... it looked like Emma would need to be bumped.  

He told us that there was a very slim chance of the cath happening in the morning, but if we wanted to, we could spend the night on the 8th floor to be prepared just in case Emma could go to the Cath Lab.

 We decided to go ahead and stay so that we wouldn't miss an opportunity if it occurred. We spent the night on the 8th floor at children's medical center. They were very accommodating and only made Emma wear a pulse ox probe and held off on an IV.  

The following morning Dr. Lemler came by and said that if the case that was going to the Cath Lab right then went well and did not need to go to the CVICU, then Emma would go to the cath lab around 10 o'clock that morning. They were going to call her ophthalmologist and let him know that it looked like it was going to happen and it would just be a few hours later than expected. We were very excited and relieved that we could go ahead and go through with the procedures; however, her ophthalmologist decided that he could not work her into his schedule and refused to do the procedure. We decided that since we worked so hard to do these two procedures together that we would go ahead and wait and try to reschedule. We called his office immediately to see when his next available day would be and we were informed that he no longer wanted to be on Emma's case, no longer would perform surgery on her, and he was referring her out to another ophthalmologist.

GREAT!!! Now we were having to start at square one again. We were angry, frustrated, and overwhelmed.  We were just ready for her to have these procedures done. We have  been trying since March to do these and keep having obstacles in our way so to speak.

We learned that the ophthalmologist that he was referring us to is at children's medical center and our cardiologist knew of him and thought  he would be more flexible with unforeseen issues that arise when dealing with critical cardiac kids. We called to schedule an appointment and were able to get in (with Dr. L's help) at the end of June.  Emma had a very thorough appointment with the team at children's medical center. We were there for almost 4 hours and were only not being seen by a person during the 30 minutes her eyes were dilating. They carefully looked at everything in her eyes and determined something that we have not been told by her former ophthalmologists: one at CMC Dallas and the one in Plano who no longer wants her case....Emma is apparently extremely nearsighted.  We knew she was slightly nearsighted, but not to the degree she actually is.

The new ophthalmologist wanted her fitted for glasses and wanted to see her back this coming Monday, July 7th, in order to get more measurements to better determine if surgery is actually needed at this time. We left the office and immediately went to get her fitted for glasses. Her glasses will hopefully be in on Monday, July 7th as well. We know it will be a fight to get her to wear them since she is not a huge fan of things on her face, but we will work hard with her so that she can see more clearly.  

To be honest with you, we were shocked at this news. You see, Emma has been able to do things that would seem insurmountable with bad eyesight. She can work puzzles put, pegs into a pegboard, navigate her wheelchair successfully around corners all through the house, spot us from across the room, and many more tasks that would seem very difficult with her terrible eyesight. However, we know one thing for sure and that's emma does things her own way. 

You might say that we are also a little...okay, a lot upset that this was not divulged to us in the past. We were not too fond of the first ophthalmologist, so we moved to a new one in the Dallas area that was ranked very high and that we heard good things about.  We trusted this person's judgment based on multiple exams, and agreed that surgery was the right route for Emma.  And yet, we've gone this long without providing her perhaps what she really needs. I felt like a failure. I felt like I let her down. So now the new journey begins, we are hoping and praying that we have a plan on July 7. We stressed the importance to her new ophthalmologist that her heart cath needs to be done very soon, so if  he believes after the second eye exam that surgery would be beneficial for her then we need to do it now.

 Scott and I are immensely exhausted from this back-and-forth game and we're ready to make decisions for these next medical steps for our girl. Please be praying for us as we do our best to get Emma the things that she needs and get her a new eye surgery/cath date as soon as possible. 

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

Emma and her Daddy the day she was supposed to have surgery/cath in June

Mom...I can help fold laundry :)


Emma and her side-kick

Emma and Grampa....best buds

Cheering on cousin Coen! 

New therapy exercise to help with mouth closure...;)

Loves playing/wearing her AFOs

Thursday, May 29, 2014

Two Week Countdown


TWO WEEKS!  TWO WEEKS!  In less than two weeks, Emma will undergo her heart cath and eye surgery.  After having to postpone her cath in April due to pneumonia, we have been extra cautious to limit her exposure to the outside world.  Emma does not like being stuck inside 24/7.  She drives her wheelchair to the door and tries her best to open it.  It breaks our hearts to limit her so much, but we really have to keep her sickness free in order to have these procedures completed on June 11th.

June 11th: the day we have been anxiously preparing ourselves for.  Emma will be put under anesthesia for the first time in over two years.  While this may not seem like a major thing….the last time Emma was under anesthesia did not go well.  Emma coded and we prepared ourselves to spend our last moments with our sweet baby girl.  So, to say that we are a little nervous is an understatement.  The plan is to do her eye surgery first to correct her strabismus, then she will undergo her heart cath to check her pressures and function, evaluate her pulmonary arteries, check for collaterals, and do any “tune-ups” deemed necessary by Dr. Nugent.  The team will admit Emma the day before to give her fluids and we are expected to spend at least 24 hours post procedure in the hospital. The results from this cath will give us a better idea of what Emma's future heart plans look like.

Since our last post, Emma has celebrated Easter, stood up like a big girl all by herself, and kept us laughing at her antics.  We can no longer eat anything at dinner without her wanting to try everything that's on our plate. We are waiting for the day that she does more than just lick the food, but actually eat some. She is really understanding and mimicking things that we do and it's fun to see her take part in the world around her.










We appreciate your prayers as we approach her coming procedures. We ask that you pray for successful procedures, an uneventful and smooth recovery, and an anxiety-free hospital stay for Sassy.  

We promise to keep you updated here on the day of her procedure as we receive updates.

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


Sarah 

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