Monday, November 10, 2014

One Month




In One Month…………………..

I will hand my precious girl over to a new medical team…..a new surgeon will skillfully open her chest and repair the area where her pulmonary veins enter her left atrium.  I will once again turn my “baby” over to a team, look them in the eyes, and beg them to care for her like they would want their own children cared for during a major open heart surgery.  I will kiss my precious little girl, tell her how much I love her, and once again pray that God puts his hands on her and helps her fight through this next battle in her life.  I will sit in a waiting room with Scott and my parents, anxiously awaiting updates from the OR.  I will stand by my daughter’s hospital bed as life-saving meds and machines support her heart and other organs as she recovers from surgery…….in one month.

We are busy preparing for our trip to Boston.  We have our transportation arranged; hotels booked, and are working diligently to finalize oxygen plans.  This month will no doubt pass quickly as Scott, Emma and I prepare to leave our house for an unknown amount of time. 

We have done our research and are at peace with the decisions we have made.  We are forever indebted to our CMC team for all they have done to help us get to this point and supporting us in this next step.  As we move forward, we continue to ask for your prayers….prayers for Emma, her new Boston medical team, and Scott and I.  Your endless support and encouragement give us the boost we need when we need it the most.  Watch the blog for updates on our Journey to Boston.

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

Enjoy a few pics from our recent outing to the Dallas Arboretum 








Monday, October 6, 2014

Happy 4th Birthday Emma Nae


Happy 4th Birthday Emma Nae


          We have been truly blessed with another year with our precious Emma.  A big majority of this last year was filled with time spent in isolation in preparation for procedures so we were unable to get out of house as much as we like too, but we cherished all of our time spent together getting to watch Emma grow and develop. 

Emma has made tremendous strides in her physical development this past year.  Her little legs are gaining muscle and allowing her to bear more weight, take supported steps, and pull herself up from varying heights off of the floor.  Emma is also using sign language to aid in her communication skills.  She is fascinated with animals and is quickly picking up those signs with the help of Signing Time videos.  Her comprehension of vocabulary terms is growing daily.  We very rarely show her a flashcard that she cannot identify.

 Emma loves her stuffed kitty cat and takes her everywhere.  Kitty cat even sports an NG tube, AFOs, and glasses.  Since Emma loves her kitty cat so much, we decided to do a kitty cat-themed birthday party this year.  I had a great time planning and searching for items that resembled her kitty cat.  We got to have her party on her actual birthday this year and Emma once again got to celebrate with family and friends.  Look below for a birthday story in pictures:

Holding my Big Girl at 8:44am!  I did not get to do this on the day she was born so I get my time in every year since.

Emma and Kitty Cat ready for the Big Party!

Kitty Cat Cake made by Gramma and Aunt Joni

Purrfect Party

Kitty ears picture

My Heart, Love, and Joy!

PaPa and MawMaw (PaPa is being silly)

Grampa and Gramma

Uncle Tom Tom, Cousin Trevin, and Aunt Jones

Aunt Randi, Cousin Rhett, Cousin Coen, and Uncle Caleb

Auntie Stacey and Nana Jana


Aaron, Smith, Lorelei, and Sarah

Chad, Danielle, and Addison

Grandma Estes

James and Karla

Dawson

Dayton and Kasey

Samantha and Rusty

Party Room Set-up

She loved hearing the Birthday Song

Make a Wish

What would I do without these two party helpers?

Yummy Snacks

Checking out her new clothes


Playing Peek-a-Boo with her new kitty

Emma loves books :)


She loved all of her kitty cat toys and clothes
So what is next on our list….well, we have decided to move forward with surgery at Boston Children’s in Boston, Massachusetts.  With the counsel of our current Dallas team and our new Boston team, we believe we have a plan of action to address the area of narrowing where Emma’s pulmonary veins attach to her left atrium.  Scott and I have been doing a lot of praying about wisdom in choosing the best surgical route and hospital for Emma.  The Boston team has been extremely helpful in answering any questions Scott and I have in this process and the surgeon called to speak with us personally about the procedure.  We want to make something clear, we have the utmost respect and adoration for our Dallas team.  They have been remarkable in handling Emma’s healthcare and will continue to monitor her after this surgery; however, Boston simply sees more of these cases and have had success in helping children like Emma become Fontan candidates.  They would like to move soon on this, so we are waiting to hear from their scheduling department this week.  Please keep us in your prayers as we take this HUGE step forward and move out of our COMFORT ZONE to give Emma the chance for a longer life.  We will keep everyone updated as we know more about WHEN the surgery will take place.


As always we appreciate your continued love and support.

God is Good!  All the Time!  God is Good! 

Thursday, September 18, 2014

Emma's Medical Update and a Few Pics


It has been an extremely busy month for us with Emma’s 6-month check-ups with every specialist on her team, so I will give you a brief update on all of her appointments. 

Scoliosis: Emma saw her orthopedic doctor today and her scoliosis had improved once again!  Her doctor was very pleased with Emma’s progress and told us to go home and worry about more pertinent aspects of Emma’s healthcare because Emma’s back is stable and is not impacting her pulmonary or cardiac status at this time.  The ortho doc also looked at Emma’s hips to make sure everything was forming properly.  Emma’s hips looked great as well.

Pulmonologist/Allergy Testing: Allergy testing is something Scott and I as well as her pulmonologist have been wanting to do for quite some time; however, we needed to wait until her heart cath/eye surgery was finished before we could proceed.  During the allergy testing, Emma received 72 pokes on her back with various allergens.  We were all expecting some major allergic reactions to certain outdoor allergens (ragweed, etc.) since Emma has had major asthma issues after being in Oklahoma.  However, that would be way too easy.  Emma only had one allergic reaction: Lamb’s Quarters.  Have you heard of Lamb’s Quarters?  So, I ignorantly said “well, that’s interesting because we don’t eat lamb.”  After laughing, the doctor informed me that is was a weed.  Of course, we were baffled yet excited about this news.  We headed to Oklahoma that weekend for the first time as a family since being in pre-cath isolation.  As soon as we crossed back over into Texas (slight exaggeration), Emma started sneezing and having a runny nose.  Within two days, it exacerbated to a full-blown asthma flare.  This resulted in  meds, several days of multiple breathing treatments and a few sleepless nights.  We are still unclear on what is triggering these asthma flares which is super frustrating, but we are pushing forward and trying to still let Emma live and experience life.    

Ophthalmologist: We had a follow-up with her optho and he was very pleased with how her eyes healed.  Her right eye is still the weaker eye, so we are patching the left eye for an hour each day to try to encourage her right eye to work more efficiently.

Cardio: This is the update that I am unsure how exactly to write.  You see, Scott and I are at an impasse with Emma’s cardiac care.  Dallas has taken phenomenal care of our sweet baby since before she was born.  We have known all along that there might be a time in her life that we had to pursue other opinions in order for us to make the best decision possible for Emma.  Well, we have reached that point.  Please know that we there are no hard feelings toward Dallas and they are still Emma’s primary care team.  Her team is being very supportive and caring in this new journey.  We have requested opinions from Boston Children’s and CHOP.  We will hopefully hear something back from the cardiac specialists from these centers in October.  Once we have that information, we will discuss it with our Dallas team and pray for guidance as we make a HUGE decision on the next surgical step for Emma.

Feeding Therapy: While we are waiting on the next step, we have decided that it is time to push Emma in her feeding therapy.  We have had such caring therapists that have worked with Emma for a few years and have aided in her making tremendous progress in all developmental areas.  One area that she continues to struggle in is with liquids.  Emma has no desire to drink, so we have enrolled her in an extensive feeding program through Baylor called: Our Children’s House.  Emma will be enrolled in the day patient program.  Emma will attend this program four days a week for five weeks beginning at the end of October (insurance clearance/waiting list).  Here is a brief description from their website:

On the road to better eating habits, some children require more intense, frequent therapies. In our Day Patient program, your child sleeps at home with you, but is in treatment with us from 9 a.m. to 3:30 p.m. weekdays.  
               Sensory integration therapy for texture, taste and sensory problems
               Oral motor skill therapy for swallowing and/or chewing problems
               Psychological consultation 
               Four to five structured feeding, occupational therapy, speech therapy and psychological consultations each day

We are being cautiously optimistic about this new endeavor.  We are praying that Emma is receptive to this intense therapy and that she is able to make progress with her drinking.
 

Neurologist:
Her neuro appointment was short and sweet.  Emma’s neuro was happy with her progress and said we will just continue to monitor her.


Well, that about wraps up her medical updates.  There is fun stuff to catch you up on, but that will have to wait for another night.

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


Sarah


Wheelchair Fun at Gramma and Grampa's

Busy with Cousin Coen

Uncle Caleb is so Funny!

Hay bale fun!

Standing like a big girl at the window looking for flying pigs :)

My beautiful heart warrior

She looks like such a big girl in this picture

Wednesday, August 6, 2014

Quick Update

Just wanted to shoot out a quick update.  Emma was stable enough to be moved earlier to C8 which is the step down unit, so to speak, of the CVICU.  She has had all of her IV lines removed and now we are just getting her back to her home regimen of things so we can get discharged.  Not sure at this point when that will happen but hopefully soon.  Everyone, doctors, nurses, etc. have been so great during this hospital stay and we can't thank them enough for all their hard work and dedication!


Now, off to bed for Sarah and me.  Again, thanks everyone for the continued thoughts and prayers!


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


-Scott

Emma's first selfie (we did not know she was taking pics) ;)


Cath Update 5

So, long night.  Sarah and I did not get a lot of sleep and neither did Emma.  Emma was just uncomfortable and didn't sleep well.  She also had a lot of stuff going on from the care perspective last night that would wake her up and then in turn, us up.  Overnight, we also had some electrolyte issues which meant some arrhythmia issues.  Nothing severe, but we had to address those as well.  So, like I said, long night with little sleep.  We were greeted this morning, however, by a smile and some laughs.  This was so great for us to see! :) Those though were short lived as she got tired and is now back asleep.  Her cath doctor already came by this morning and said she looked great.  The doctors in the PICU also have rounded and think we are ready to go to the cardiac floor in preparation to go home in the next day or so.  We should be removing the majority of her IV lines today, which no doubt will also make her more comfortable.  We have also started back her water through her NG tube and will get to try and feed her today as well.  We are also weaning down on her oxygen.  She has been on 2L continuous flow and we just went down to 1L.  If she handles that well, then we will keep titrating it down to be on room air for discharge.  All in all, we are so proud of how she is doing and how she is recovering!

 

As always, we thank you for all those that are thinking about us and praying for us!  Simply put, prayers work.  What an amazing God we serve!

 

God is good, all the time.  And all the time, God is good.

 

Some prayer requests:

1) Pray for the upcoming decisions that will need to be made regarding Emma's future surgeries/procedures.

2) Pray that she continues to have a quick recovery.

3) Pray that she tolerates food well as we start feeding her again.

4) A special prayer of thanksgiving for the doctors, nurses, respiratory therapists, etc. that are taking such amazing care of her.

5) Pray that she continues to do well coming down on oxygen.

 

Tuesday, August 5, 2014

Cath Update 4

Emma is settled in the PICU and is finally resting.  She was able to be extubated and seems to be handling that fine.  She is a mad little girl and just wants to be left alone.  Her eyes are slightly bloody and swollen. She doesn't want them open for very long and understandably so.  Our goal is to keep her comfy tonight and let her rest up.

We appreciate all of the love and concern each of you have shown.  

Prayers for a restful evening and good respiratory status.  



Cath Update 3

Emma is done with her cath and stable.  They were working on getting her extubated.  We will be going to the PICU due to crowding in the CVICU.  We are slightly disappointed in this, but one of her CVICU docs is on that floor, so that makes us feel better.  

We received a lot of information and will divulge that info as we process it more.  Things look pretty much the same as they did 2 1/2 years ago.  She has higher pressures (20s) and has developed massive amounts of collaterals that are working in her favor right now.  The Fontan is not in her best interest. 

In the positive, her lungs looked better, her PAs looked good, and her heart is pumping well.  

We will be speaking and consulting several people over the next few weeks to determine the best route for our girl.  

Please pray for a continued smooth recovery and an uneventful few days of recovery.

Pray for wisdom for Scott and I as we make life-changing decisions for her.

Pray for all the doctors consulted that they will be open, honest, and helpful.

God is good!  All the time!