Saturday, July 2, 2011

The What Ifs and Waiting Games....


Where do I begin……  So many things are going through my mind right now.  I have had some days lately where I have to remind myself to take a deep breath and smile.  Don’t get me wrong, I love being a mom to Emma.  She is beautiful, strong, brave, funny, and brings so much sunshine into my day.  However, we are under CONSTANT scrutiny.  If one lab is off, if her sats are a little lower, if she doesn’t gain weight one week, if her x-rays look off……then more tests have to be done and more ifs are added to the equation.  I think Scott and I would be lying if we said that this is easy.  It is NOT easy.  Sleep---what sleep??? ;)  Our days are so busy with therapies, medicines, treatments, etc.

 We are in a way, living on the edge right now.  Although her surgery is scheduled for August 22nd, her oxygen saturations are what we are depending on.  If her oxygen saturations drop then surgery will have to come sooner.  Typically, the Glenn is done between 3-6 months of age.  They are “asking” Emma to wait until she is almost 11 months.  My “mommy gut” does not think that her shunt will last that long, but we will see.  Her oxygen saturation levels have been slowly trending down, so time will tell.   So, we are in the waiting game once again.

During this time, I am also trying to prepare for my PhD Quals and Scott is prepping for his Texas Pharmacy license test, so we are staying busy.    

Well, enough of the “what ifs” and negative attitudes.  I am sure that none of you want to read too much about that.  Instead, you are probably curious about our sweet little Emma and how much she is growing and changing.  I am more than happy to tell you all about it.    

Emma constantly amazes us.  She is full of so many smiles and laughs.  She loves interacting with us and is getting pretty spoiled rotten.  One of the cute little habits she has picked up happens during therapy time.  Whenever she does something really good and gets praised for it, she looks up at Scott and I and just smiles so big.  I guess she is as proud of herself as we are.  She is getting stronger and stronger everyday.  She can sit in her Bumbo chair for about 45 mins.  She can fully extend to reach whatever she wants.  She can pull, tug, push, etc.  Her range of motion is so much better as is her tolerance to tummy time.  She is still not putting much weight on her feet, but the therapist is not concerned with this right now. 

We are enjoying seeing her change a little everyday. And, her little smiles make it all worthwhile.  She weighs around 16 pounds!  She is my little chunky monkey!

*******Small Addendum:
            I was about to post this when I got a call that they wanted us to be admitted to the hospital to make sure that the recent (small) increase in oxygen wasn’t caused by anything major.  They ran many tests and did not discover anything big, so they sent us home on Friday. 
Prayer Requests:

1.     Please pray for Emma’s upcoming surgery. 
2.     Pray that Emma’s recovery will be smooth and short.
3.     Pray that Dr. Forbess and his team that they will have the wisdom and knowledge to perform the surgery at the right time.
4.     Pray that Emma’s saturation levels stay good until the surgery.
5.     Pray that Emma continues to develop and get stronger everyday.
6.     Pray for Emma’s heart buddies.  There are several of them that need extra prayers right now.

God is Good!  All the Time!  God is Good!  He gives us the strength to make it through these storms in life. 

Much Love and Thanks,
Sarah (Emma’s Mommy)  

Fun in the sun!

Oh no, We have been caught...;)

Small hospital stay!

Rise and Shine!

4 comments:

  1. Prayers continue for your family. I can not begin to imagine how overwhelming your days can be. I don't tnink anyone here would judge you for sharing your heart. It is natural to become weary. It is just a reminder to those of us who only know you through this posting to keep you all lifted in prayer daily. God will continue to give you the strength for this journey.

    God not only blessed you with Emma, He also blessed Emma with you. I'm sure you have seen many children who did not have parents who were willing to make the sacrifices necessary to see this journey through.

    God doesn't follow the doctor's time table, so Emma will have surgery when the timing is just right. Praying for the doctors to have wisdom as they make decisions regarding Emma's care.

    Joy/Chandler, OK

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  2. Sarah,

    My wife Jeannie and I met your parents at Prestoncrest this morning, and spent time praying for baby Emma. I want you to know that we will be following the blog and continuing to pray for Emma, and you and Scott as well. May God pour out His richest blessings on all of you.

    Jim Herman

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  3. Thanks for updating...we pray for you daily. We will be praying for the surgery and all of Emma's needs. Praying for you and Scott too! God will provide!
    Angie-Ada

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  4. Hello Scott and Sarah,
    I am Sarah mother to Baby Rylie. My husband Mike and I met you guys at Children's where our daughters were in the ICU on the 3rd floor together but never had rooms close to each other. Emma is such a beautiful baby. My family prays for your family every evening. God is good and he will see you through this journey. We have thought about you guys very often. I am thankful that I found this blog and now we can stay updated on Emma's progress. We will contune to pray for Baby Emma and your family.

    Mike and Sarah Stephenson
    parents of Rylie Stephenson

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