My Little Fighter

That smile she is giving me in the picture below is one of the things that keeps me going.   I miss that smile so much right now.  Emma continues to make baby steps in the right direction which is a good thing.  She is trying to breathe over the oscillating ventilator which is weird because it breathes like 600 breaths a minute...but that is my little fighter....always working hard to survive.  Her swelling is slowly coming down (we have a LONG ways to go, but we have urinated a liter off....5 more to go) yes, Emma had 6 liters of extra fluid on her).  Her hands and feet are warming up and I can actually feel pulses...yay!  We will get another heart echo today to look at function (please pray it is improved).  Thank you all for the prayers and encouragement.  I wish I had time to write you all individually and tell you how much it means to me.

Brief Update

Just a brief update.  Emma is still stable and improving slowly.  We have been able to work down on her vent settings some but with all the fluid that she has accumulated around her lungs, it is going to be difficult to go down much further without probably having to have that fluid drained off.  We have been able to remove one of the medications that support her heart function (inotropes), which is really good.  They have been working at removing some of the fluid off her body that has accumulated since she got admitted.  This has been successful thus far which is a big blessing.  She had/has so much excess fluid accumulated.    All in all, Emma is making positive steps forward.  Continue to pray for her and her recovery process.  Also, remember to pray for all the doctors and all the staff here at the hospital as they take amazing care of Emma. 

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

Update

Brief update:  Emma's lungs are filling with fluid and causing ventilatory issues so they tried to put in a pigtail but she has so much scar tissue that it was unsuccessful.  We are trying to control things without surgical chest tube intervention but have that in our back pocket.  We are still fighting for Emma and she is still fighting.  Her heart function looked minimally improved.  Everyone is working really hard for her.  We have an extremely uphill battle and to be honest it is very scary but our God is good and He will carry us through whatever storm comes our way.  We want to thank everyone for prayers and support....it gives us peace at a time when we need it the most

Please pray

Emma had a cath on tuesday to fix some issues in her heart. She has had a difficulty recovering and has run a high fever and had some swelling. Emma took a turn for the worst yesterday afternoon/evening.  She had to be intubated because of her acidotic blood gases.  The problem that we then had was that none of the traditional ventilators were working so we had to put her on an oscillating vent.  The challenge then was to correct her acidotic blood gases.  It took all through the night and into this morning to see some improvement.  During all of this, her heart took a hit and is not functioning like it should.  Things are very critical right now but Emma is still fighting so we are too! (they have her sedated and paralyzed). Please pray for our princess as she fights this uphill battle.

Update on Miss Emma

It has been a while since we last updated the blog and I apologize.  Emma's birthday went well and she continued to improve and we were discharged on the 8th.  We went home and enjoyed watching the OU/Texas game.  After the game, we put Emma down for a nap.  Everything was going great and we were excited to be home, but when Emma woke up from her nap, we noticed she was having a little more difficult time breathing.  So, we called up to the hospital and told them what was going on.  They called back and told us to just watch her and see if she got any better or if it got worse.  So, we watched her through the night and then through the daytime on Sunday.  We decided Sunday night, that we needed to take her in as she had not gotten any better and looked a little worse than on Saturday.  So, at around 11:45pm, we headed up to the ER at Children's to get her looked at.  Sarah and I thought that more than likely she had developed another effusion on the left side, and so it was no surprise to us that when we saw the xray, an effusion was glaring out at us from on the left side.  We were admitted to the 8th floor for them to attempt to diurese off the effusion.  Once on the 8th floor,  they decided to send us down to the ICU in case she would require a chest tube placed.  After a few days of intense diuretic therapy, the team decided that a pigtail chest tube would be the best option as her electrolytes were starting to become abnormal and possibly difficult to try and normalize as well as her effusion not improving significantly.  So, on Wednesday of this week, she got another pigtail chest tube.  It has dramatically helped her improve as her breathing has normalized, her sats have increased back to baseline, and her xray has cleared up quite nicely.  Now the big question at hand is going to be when to remove the chest tube....  Last time her xray looked great before we left the hospital and she somehow re-accumulated fluid in her chest.  So, as you might imagine, the team is not wanting to make any rash decisions. Today, we have been enjoying the OSU and OU games up in our room on the 8th floor.  Emma is very happy, but at times still quite fussy from teething (she is cutting around 8 teeth at once).  Amazingly, with all Emma has been through, teething is by far one of the worst things for her.  She cries and moans which just breaks our hearts!  We feel so sorry for her because we try everything that you can think of to help with the teething and it just doesn't help her that much.  Thankfully though, teething doesn't last forever and we look forward to the day when her pain from this subsides and she is our happy go lucky baby again!

Some prayer requests:
1) Pray for her effusion to go away for good so that when we remove the chest tube, she will not need another one placed.
2) Pray that her teething pain lessens.
3) Pray for all the doctors, nurses, and other medical staff as they take care of her and all these other precious children each day.

As always, we are so thankful to God for blessing us each and everyday with this sweet little princess!

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

First Birthday Pics!

Holding my baby at 8:44am (birth time) since I did not get to last year!

Nana Jana and Aunt Stacey came!

This WONDERFUL lady, Michelle, (with Icing Smiles), made Emma's birthday cakes!

Party decor

Check out the cute cakes!

More room decor!

Waiting on the Pizza!

Emma's birthday chair

Presents

Little red wagon from Gramma and Grampa

Birthday sign that Gramma and I made!

Birthday chair again!

Scarlett (CVICU RN) and Kim (CVICU NP)
These are two, wonderful, caring ladies!  We love them!

Happy Birthday Girl!

Opening Presents!

C8 nurses

Cheryl and Cindy
These wonderful ladies are from the prenatal program at Dallas.  They are the reason we choose CMC!  Love them!

With Cindy and Cheryl!

I am going to get you Mommy!

Silly girl!

Courtney is another one of our CVICU nurses!  She is wonderful!
We love her for taking care of Emma post Glenn!

Our Wisconsin nurses Becky and Nate (little Gracie is in this picture too)!
These two mean so much to Scott, Emma and I.   Nate and Scott cause trouble in the CVICU at night. Love you both

Wendy the massage therapist!  One of Emma's favorite people!

Miss Sarah!  One of our lovely night nurses!  She is always so caring!

More presents!

Dr. Lemler!  Emma's cardiologist!  We are so blessed with great doctors.

Dr. Koch!  Emma's head Intensivist.  He has truly been with Emma through the good and bad days!  We cannot not say enough how much we appreciate him!  He has also had to hear me vent more than once :) 

Chanh (RT)!  Emma loves Chanh.  They are homies ...lol

Ready for the cake??

Here you go!

Happy Birthday to you!

Digging in!

Yummy!

Beautiful Cake!

Right before I accidently let her fall backwards :(

Taylor (NP), Naomi (NP), and Dr. Clay (Intensivist)
More of the wonderful CVICU team!  

FAmily

Estes, Gerth, Stewart family

Our little family!

Love my 1 year old

To My Little Emma: Your First Year

To my Sister Girl, Sweet Pea, and Punkin’ Head:

A year ago today, I was anxiously awaiting your arrival.  I could not sleep knowing that the next day would change our lives forever.  I spent hours praying, talking to you, and rubbing my huge stomach.  I was so scared for your fragile little body to enter into this world.  As excited, as I was to meet you, I was equally nervous about the journey you were about to take.

 I will never forget your sweet little face (well, the small part I could see).  You had a perfect little button nose and a head full of dark hair.  You arrived at 8:44am and weighed in at a whopping 6 pounds and 1.5 ounces.   They quickly wheeled you away to Children’s Medical Center and your wonderful Daddy was with you every step of the way.  Your daddy is so proud of you!  You have been his Precious Princess from day one.  You were so sick—sicker than anyone thought.  The doctors and nurses worked quickly and diligently that day to help get you to a better place.  All the while, I was stuck in a recovery room in a different hospital.  My heart and arms ached for you.  I hated that you had to go through so much on your “birth day,” but I hated even more that I could not be with you.

Right after you were born!

After your first Cath

 

Waiting to really “see” you for the first time seemed like eternity.  Your daddy did a great job keeping me updated, but I wanted so bad to see, touch, and kiss you.  I was finally allowed to leave Parkland to come and see you.  You looked so small and helpless laying in your little hospital bed.  Tears filled my eyes as I got to really take “you” all in for the first time.  You were everything I could have imagined and so much more.  I reveled in the opportunity to give you a bath and dress you up in your bow and little socks.

Meeting Mommy for the first time!

First Family Photo!

Beautiful Baby from the outside in.

The days that followed were filled with so very many ups and downs.  We soon realized that your journey was not going to be typical or easy.  You went in for your first open heart surgery on day two and crashed on day five!  I will never forget the sights and sounds of that crazy evening.  My heart physically hurt as I watched you through the door.  Your room was full of nurses, respiratory therapists, and doctors.  I was watching your heart rate and oxygen saturation levels drop to nearly zero.  I begged God to let you live and cried out to the team to make you better.  No mom should ever have to watch their child crash----those memories will forever be engrained in my memory.  You are such a fighter and with God’s help, you pulled through.  Little did I know what was to come.

After your first open heart surgery

Changing your little diaper

Love those sweet little eyes!

First time to be extubated!

Right after you crashed for the first time

You went in for the Norwood on day seven.  Your daddy and I, along with family and friends, waited anxiously for you to come out of surgery.  You actually did very well post operation and it looked like we would be out of the hospital in no time.  Boy were we wrong.  Your little body had many surprises for us.

Norwood surgery time

Bless your little heart

You were such a brave little girl!

After recovering from the Norwood, your medical care became very complicated.  You had problems with chylous effusions (leaking fat from your chest cavity), problems being extubated, problems gaining weight, problems with kidney stones, gastrointestinal issues, eye problems, etc.  You had a few more episodes of mucous plugging in which we nearly lost you.  We also had a very scary experience with you in which we were within minutes of having to hook you up to ECMO due to uncontrollable heart arrythmias.  You had to spend time in a “grow box” because you did not have the energy to gain weight while being able to keep your body temperature regulated.  You were also listed for transplant because your heart was not working like it should.  We were told at that time that you would NEVER be a Glenn candidate.  As you can see, just in this short little description, your road has been very bumpy.  But all during this journey, you have had amazing people encouraging you and more importantly, praying for you.  You are so blessed to have such wonderful people in your life.  All of the surgeons, doctors, nurses, and therapists have worked tirelessly to help you get 

better.

Into the Grow Box!

Echo Time!

21 days old and the first time to hold!

Best Daddy in the world!

Getting bigger in the "Grow Box"

Check out all of the tubes and wires!

Boomer Sooner!

Happy Baby!

You were one sick little girl

Day your were listed for transplant

Getting Some Gramma Lovin'

My little Minnie Mouse is getting better!

And get better you did!  After almost six month of being intubated, you were finally able to get that nasty breathing tube out.  We had so much fun holding you and loving you!  You are probably the most loved little girl ever.  You improved at a steady rate after being extubated.  We were all so very proud of you.  We got to move your feeding tube out of your intestines into stomach and start feeding you breast milk.  You continued to improve, gain weight, and wean on the amount of oxygen flow you were on.  The CVICU team decided that you were ready to move on up to the 8th floor.  This was music to my ears.  I was so excited because we were told this would never happen until after you got a new heart.

First bath in a bathtub 

Family Time!

You smile a lot now!

You got to try cereal

The nurses threw you a 6th month birthday!

You got to go outside for the first time!

You were excited about meeting your little cousin Coen!

You were worn out after moving to the 8th floor!

You were released from the hospital at the end of April.  We were so excited to get to leave the hospital and bring you to a “home-like” environment.  You really seemed to like the change of pace.  You have slept much better and are growing like a weed.  You have had a lot of visitors and have been held a lot.  You like to play and have even learned how to sit up on your own, roll over from your tummy to your back, and boy-oh-boy do you like to play, especially with anything that makes noise or lights up.     

Mother's Day!

Hanging out in the hospital!

Bumbo time!

Visit to the Park!

Father's Day!

Swimming Pool time!

First 4th of July

You were a ROCK STAR after the Glenn

Sitting up on my own!

Emma, you have taught me more in your one year of life, than I have ever learned in my 26 years on Earth.  This has been the most emotionally and physically draining year, but more importantly, it has been the happiest, most joy-filled year that I could have ever hoped for or imagined.  Your precious smile and laugh melt my heart.  I hope you always know how truly special you are to me.  You are what I prayed for and in your eyes I see hope!  You have strengthened my prayer life and my faith!  I love our days spent together.  You are worth it all.  Remember to always be a fighter.  Never give up and remember that you have the biggest fan club cheering you on every step of the way.  You are an inspiration to so many.  I pray that God blesses you with many more years and that you continue to be a light for Him!  

You're Special, You're Special, You're My Special Little Girl

You're Special, You're Special, You're My Special Little Girl

I Love You, I Love You, I Love You Because

God Made You My Special Little Girl

I love you to the moon and back and so much more,

Mommy
Jeremiah 29:11