WE NEED YOUR HELP: Hope From Emma's Heart Part 2

Hello LOYAL Blog Followers....

WE NEED YOUR HELP. . .


I am a member of a wonderful group called Mended Little Hearts of Dallas.  Our goal is to be a support group to the Heart Families in and around the Dallas Metroplex.  One of our big projects is Care Bags for the families in the CVICU and 8th Floor at Children's Medical Center in Dallas.

Take a minute and read the following.  See if you can put yourself in our shoes for just a minute.....

Imagine finding out that your child has a congenital heart defect. This happens to about 40,000 new families each year. In fact, congenital heart defects are the most common birth defects in the United States.

Children are often sent to another city where a hospital can perform open-heart surgery or other procedures. Parents may have nothing more than the clothes they are wearing and the contents of their wallet or purse with them as they sit by a hospital bedside hoping that their child survives.

Mended Little Hearts provides care bags to let families know that we care and that they are not alone. Families are connected to a caring support network and given educational materials to help them cope.

(http://www.mendedlittlehearts.org/document.doc?id=64)

HOW CAN YOU HELP???

Scott, Emma, and I are in charge of the following items . . 

75 Individual Laundry Detergent Packets (You can find these in Target and Walmart in the Travel-size item section) They are only about a dollar a piece.  You can skip your daily coffee or pop a few days---right???? :)

75 Laundry Bags---Once again, you can find inexpensive, but effective ones at Dollar Tree!

75---Tide-to-go pens or Shout wipes....(You can find these in Target and Walmart in the travel-size item section)

75---Small boxes of dryer sheets

                           ------------------------------------------or------------------------------------

Walmart or Target Gift Cards or Money for me to purchase the needed items.

Let me tell you from personal experience, you do a lot of laundry in the hospital.  These items will be so helpful to these families.  

This is one of the projects we are doing as a part of Hope From Emma's Heart Program this year. . . 

Thank you for all of your help in the past.  I know that our loyal blog supporters will step up and help make these Heart Families' stay in the hospital just a little bit easier.

If you are in the Ada area, feel free to drop off the items to Scott Estes at Citizen's Bank of Ada.

If you are in the Dallas area, I would be glad to arrange to pick up the items.

If you want to mail the items, please email me at: s.stewart1114@yahoo.com and I will send you our address.

We would love to start handing out these care bags in August, so the sooner you can get us the items, the better.  

Feel free to share with family, friends, and co-workers.  Maybe your business could turn this into a competition and the winning department could get something special.  

Thank you again!

Scott, Sarah, and Emma

How could you say no to this face???

My Beautiful Daughter

This post was supposed to be on Father's day, however, we were out of town and when I got back, I went on the road traveling for work.  So, tonight, I am able to finally sit down and put into words what it is like to be the father of a child with HLHS.

I, like many fathers, know the feeling of being blessed with a daughter.  The smiles, the looks, the love that she shows me makes every single day, perfect.  Emma, as you all know, has had a rough road.  Watching her go through everything she has been through makes me, as her father, wish I could have taken her place.  She has had so many things happen to her, so many experiences, that no child should ever have to go though.  Yet, each day, when I come home from work, I receive a smile.  Each morning that I am blessed with the ability to wake her up, I am met with laughter and smiles.  I have asked myself so many times how my beautiful daughter, in spite of what she has been through, is the happiest girl I have ever seen.   As her father, it has been tough.  I am not going to lie.  I have found myself in a room away from Sarah and Emma, crying, hurting, because of how much she has to go through.  Now, is better than it used to be.  I think what is the hardest thing now is the not knowing what the future may hold for Emma.  Its thinking about the next surgery, instead of thinking about normal next steps for children her age.  Its trying to grasp all the little things, all the giggles, and enjoy everyday without thinking to far into the future.  Sure, I can say its unfair, that this life has not gone the way that it should have, but that doesn't change anything.  Emma will still be my Emma, and I will struggle with all the those thoughts listed above over and over again.   The journey that she is still on may be hard again or easy.  What matters is, as her father, that I always love her and cherish every moment with her.  Isn't that what all father's strive to do.  I mean no one, in this life, is guaranteed anything.  This journey that I have been on with Emma has taught me so many things.  It has taught me important things in life.  Sure, I have had times of weakness when bitterness and jealousy enter into my life.  But through it all, I have been taught so many things by my little girl.  She has taught me true joy doesn't come from your situation but from you.  She has taught me to laugh more each day.  She has taught me a greater degree of perseverance than I would have ever known.  Patience, qualities of being strong willed.  Things that would have taken me a life time to probably learn, or may have never learned.  You see, it doesn't matter in the end whether life is unfair or not.  What matters is realizing the blessings you have in spite of the strife.  Its about cutting through all the bad to see the good in something.  That "good" has blessed my life for the last almost 2 years, and Lord willing will continue to.  God has truly blessed me, and as the tears stream down my face as I write this, they are not tears of sadness but of joy, because no matter what may happen in the future, the blessings that Emma has brought me, I could have never overlooked.  Being the father of a child with HLHS is one of the most scary, sad, hurtful experiences you could ever go through, but if you cut through the negatives, you see all the positive aspects, all the blessings, and all the things that you might have overlooked or never understood.  I would never trade my time, the time from when we conceived Emma until now and even Lord willing years and years into the future, for it is through all of this that I have seen God's, mercy, protection, power, love, first hand as he has watched over my beautiful little princess.  To all the father's out there that may be reading this, and all the mothers reading it and who will share it with their husbands, father's lets never forget the important things, cherish everything, love deeper, and hold closer our little ones each day.  They are truly blessings from above! 

So now to an update on Miss Emma:

Emma is doing AMAZING in therapies.  Sure she cries from time to time, sometimes all the way through therapy, but she never stops working hard.  She is getting stronger each day with physical therapy and occupational therapy.  On another exciting note, she is eating an ounce of baby food in around 10-15min which is huge for her!  There are talks, if she continues to progress well with that, and starts taking more fluid by mouth, of making changes to her dietary regimen!  Sarah and I are extremely proud of her!  She has also discovered the art of waving which cracks us up.  She not only waves when she sees us but also at times to get our attention.  We even caught her, as we watched her on the camera in her room, waving at her birds that are above her bed! :)  Many of you know how she would shake her head back and forth to rock herself to sleep, but now she shakes her head no and she thinks that is hilarious!  We are so very proud of her, and yes we praise her every time she does any of the above! ;)  She also is saying "mmm ma" and "momma" to Sarah ALL THE TIME!  And yes, the next question is, does she say daddy or dada, which I hear is supposedly easier for them to say.  The answer is yes, but not anywhere near as often as momma.........  Somewhere along the line, she has turned into quite a little mommy's girl!  I have turned up how often I refer to myself as dada around her and say it dozens of times around her hoping to offset some of the "mommas" and replace them with daddys!  :)  All in all, she is doing really really good!


Some specific prayer requests:
1) Pray for Emma's future.
2) Pray for Emma to continuing developing, learning, and growing as she is doing!
3) Pray for Emma to continue progressing well with eating and drinking so we can hopefully slowly work down how tube dependent she is.
4) Pray for us as a family to continue to have strength each day.

As always and this will never change- God is good, all the time.  And all the time, God is good!

Daddy Scott

I LOVE MY DADDY!

Fun Family Date!

Sometimes a mask and gloves are necessary for a diaper change.

Sassy Girl!

Mom and I are best friends!

I SO CRAZZZY

Smiling in Her Sleep

Here is a sweet look of our precious princess waking up from a nap!  Enjoy!

Mother's Day 2012

First of all, a HUGE THANK YOU to all of our loyal blog followers for the kind words of encouragement related to my previous blog post.  I appreciate how accepting everyone was of my honesty.  It feels nice to be able to have an outlet for my emotions.

Mother’s Day:

It is Mother’s Day…..It is my second year to be celebrating as MMMM..MA to Emma…..It is my second year to reflect upon what it means to be Emma’s mom…

I am truly blessed to be Emma’s mom.  This is a ‘job’ that I do not take lightly.  I work so hard to try to learn how to best care for my sweet little girl.  I am constantly learning how to help her grow and develop.  We enjoy our time together and I live for that sweet smile that keeps me going. 

I have had an AMAZING Mother’s Day.  Scott went above and beyond to make me feel extra special today.  It started with a great freshly brewed cup of coffee and a gorgeous and yummy Edible Arrangement.  Scott and Emma showered me with sweet cards and presents.  Then Scott made an absolutely delicious lunch consisting of steak with blue cheese, strawberry salad, guacamole Mexicana, and a chocolate raspberry torte.   I defiantly blew my diet today and DID NOT CARE!  After lunch, we took a 2hour family nap.  It was a very good day.

As many of you know, we had to take Emma to the hospital for a few day stay.  Emma has apparently caught a virus that has made her oxygen levels off.  So, we are home again which is good, but Emma is more snotty today and a little TMI her snot is getting more yellow.  We are watching her closely and have her on constant oxygen until this passes. 

We appreciate the prayers for our sweet little Princess as she battles this virus.  It is amazing how much a virus can effect her entire body. 

God is Good!  All the Time!

Here is a little video I put together to take a look back at my Motherhood Journey.  The Martina McBride song I used has been exceptionally meaningful lately.  Enjoy:

In the Quiet Moments

Warning:  I have been trying to allow myself to open up enough, and be honest enough with my own feelings to write this post.  I have typed and deleted many times, and have started and worked on this document for a couple of weeks.  I hope it does not ‘step on any toes’ so-to-speak.  I just needed an outlet to speak my mind and share some feelings.  Thank you for listening and letting me vent a little.  Most importantly, thank you for the prayers.  Please keep them coming. 

Here we go……

Quiet Moments do not happen around here much any more.  I enjoy the noise…giggles, cries, musical toys, Baby Einstein etc.  The noise reminds me that Emma is here - - -my precious little girl who wasn’t supposed to live is VERY MUCH alive and learning so many new and exciting, yet sometimes frustrating and painful things. 

In the quiet moments when I get a chance to sit down and reflect upon the last (almost) 19 months, I can’t believe what we have been through as a family.  Being a parent of a child with a congenital heart defect, no matter what the defect, is difficult, life altering, and emotional.  However, if I am being honest with myself and those around me, I am jealous.  Yes, I said it, jealous or envious.  Don’t get me wrong, I am so blessed to have Emma and be able to enjoy her and her accomplishments. 

Are you waiting for the but………..

Here it is……

A list of things I have not gotten used to yet….

1.     People telling me that I was chosen to be Emma’s mom because I am strong enough……

a.     First of all, thank you for thinking that I am strong enough, but it is all a choice.  Scott and I choose to fight for Emma, get her what she needs, and love her unconditionally.  It is not easy.  There are days that I throw myself to the floor and scream/cry because I feel alone, stressed, and scared.  God is giving me the strength to get through this valley, and for that I am thankful.

2.     Watching Emma struggle and stress over learning new things and gaining strength both physically and emotionally.

a.     Emma sees a physical therapist, occupational therapist, and speech therapist each twice a week for a total of 6 therapies.  We LOVE our therapists.  They are so patient with Emma and genuinely want what is best for her.  They have really helped me learn how to appropriately work with her in order to help her grow and develop as much as she can, but Emma does not enjoy therapy.  Therapy (most of the time) is stressful for her, and even when she does not have ‘scheduled’ therapy she has to do mommy therapy.  There are days when I struggle between finding the balance between fun time and work time.  She is so far behind that we have a lot of homework to do, but I do not want her to hate any and all activities. 

3.      Seeing other families being “normal” and going through “normal” developmental stages.

a.     This is where the ‘green-eyed’ monster rears it ugly head the most.  There are only so many times you can explain why your 19 month old can’t walk, talk, eat, crawl, etc. before you start getting a little perturbed.  I know people mean well, but it doesn’t make it easier.  Even among the heart community Emma is a rarity.  There are just not that many people who we can relate to as far as length of hospital stay and severity of complications that kept us there.  So while most people I know who have children around Emma’s age are talking about potty training, learning new words, speaking in sentences, being more independent, going on first trips to the park, zoo, lake, movies, restaurants, etc, and dealing with shots, snotty noses, ear infections, and fevers----we are isolating our child, taking her to every other day x-rays and blood draws, trying to work with terrible sensory issues so she doesn’t pull out all of her hair (everything is scary to her including: wagon rides, swinging, new people, weird textures, stroller moving too fast, anything food related, and I could go on and on), and  all of her doctor appointments and therapies.

I crave normal sometimes.  I am fully aware that this is our new NORMAL.  I accept that—embrace it even, but that does not mean that I don’t miss the little things like attending worship as a family, or going to Walmart anytime for something I need at home, going to family events, etc.

  I am working at becoming more at peace with this aspect of our lives, but I am a work in progress so to speak.  Please know that I do care about the wonderful things that your child is learning how to do, but that it does strike a nerve inside of me and reminds me that this terrible life altering birth defect CHD has stolen some of those moments from us (at this current time).

I am a mother of a special needs child!  I am proud of this title, but at the same time struggle.

4.     People telling me they know how I feel….

a.     REALLY???  I even ‘chastise’ my husband for saying this from time to time.    There are VERY few people who truly know how I feel.  I don’t mean to seem negative, and I am sure people are only trying to be helpful, but……it really isn’t.  I love living close to Emma’s  doctors, but it is lonely . . . I spend hours on the phone with insurance companies and doctors offices. . . I answer five million questions from all of the medical personnel….and ultimately I try be Emma’s biggest advocate while trying to live my life as well. 

Thank you for letting me vent a little.  I want you to leave this post remembering that I LOVE my child dearly.  I also want you to take a moment and say a prayer of thanks for the healthy children in your life and offer up a prayer of strength for those you know and even those you don’t know who are fighting for their children every day.

Always remember that GOD IS GOOD!  He is---He really is!  All the Time!  Even in the hard times, the quiet moments, when life seems unfair!

Jeremiah 29:11

Sarah 

What a HOPPY Easter!

Drum roll please……

This Easter 2012 we got spend all of the WONDERFUL weekend in OKLAHOMA!  The doctor’s approved Emma to travel to Oklahoma.  We loaded up the car and Emma on Saturday and made our way to Oklahoma.  Emma was so excited about the car ride that she stayed awake the entire trip.  We made one stop at the Oklahoma/Texas border and took a picture ok Emma in front of the “Welcome to Oklahoma” sign. 

We arrived at Emma’s Gramma and Grampa’s (my mom and dad’s) house and were welcomed by a welcome sign and family.  Emma was very tired from her drive and lack of nap, so Grampa walked her around until she went to sleep.  While Emma slept, Scott and I enjoyed catching up with Randi, Caleb, Coen, Mom, and Dad.  We also prepared a BIG birthday dinner and celebrated mom’s birthday together that evening.

We attempted to dye Easter eggs on Saturday night, Emma dumped the cup of red dye all over herself and that made her quite upset; however, she did 'color' on one egg before being done with this Easter tradition.  She was either so excited about the Easter bunny, or unsure of her new surroundings but Emma did not sleep well Saturday night.

She awoke Sunday morning (slightly cranky from the lack of sleep), but quickly cheered up when she got to see the fun items in her Easter baskets.  The rest of the family headed to church while I stayed back with Miss Priss.  We cannot get her around huge crowds just yet, but it gave Emma and I some one-on-one time.  She was very happy and let me take some cute pictures of her with her Easter dress and basket.  

We met the rest of the family at the Vass Home for lunch and an egg hunt.

Headed to Oklahoma

Made it to the State Line!

Welcome!

Good Traveler

Coen fishing with Grampa!

Scott decorating Mom's birthday cake....I am so blessed to have a man who can cook!

Sweet Smile!

Getting kisses from Coen.

Coen thought her walker was fun!

Uncle Caleb entertaining Emma!

Decorating Easter eggs.

Emma has done decorating!

Caleb and Randi's creations.

Emma and Coen's creations prior to being done with decorating!

Emma's eggs.

Grampa has his hands full!

Lovin' on Aunt Randi!

The Easter bunny came!

Emma excited over her presents.

Looking pretty!

So Cute! 

Look what I found Mom!

Love my life!

Easter Family Pic!

On our way home we spotted a rainbow! 

Getting an Easter egg from Nana

Side Note:  Emma's last cardio appointment went well.  We are currently trying to take Emma off of her fat free formula (Tolerex) to a more complete formula (Neocate Jr).  We could use your prayers for Emma.  Our hope is that her body will cope well with this new formula and Emma has not fluid build up in her chest cavity.


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

2nd Episode of Season 2 (Children's Med Dallas)

Here is Episode Two for those wanting to see the conclusion of Rylynn's transplant!
Enjoy :)