Saturday, June 4, 2011

The Latest News

So Sarah and I were talking tonight and both came to the realization that neither one of us had updated the blog in a while with all the latest news on Emma.  So here it goes.  Emma is back at home again.  She went into her cath procedure on the 27th to find out more information as to what our plan would be for the future (whether we would go Glenn Procedure or heart transplant.)  Sarah and I were really worried because we knew the cath would be long and she would have to be reintubated (breathing tube put in) to do the procedure.  As many of you are aware, it was such a struggle getting her off of it the first time that we were very scared and worried about her having to have it again and then her being able to come off of it.  Also, we were concerned with how long she would have it if she could not come off.  So, she went into the cath procedure on the 27th of May at around 7:30am and did not get done till around 1 pm.  So she was in the procedure for over 5 hours.  A very long cath procedure but Dr. Nugent had a lot to do when he was preforming it.  While he was in there, he ballooned open the stent in her left pulmonary artery bigger to make it anatomically more  like her right pulmonary artery.  If you remember, this left pulmonary artery was very small in comparison to her right pulmonary artery until he put a stent in it.  It was very very tricky to put a stent in the first time because he was unable to use a guide to put the stent in.  Without a guide, he basically had to manipulate the stent by hand which can be very hard to do.  The reason he could not use a guide is because Emma would go into something called heart block every time he would slide the guide through her Sano shunt (which is the initial connection made during the Norwood to enable blood to flow to her lungs to be oxygenated).  Nevertheless, as good as Dr. Nugent is, he successfully put the stent in the first time and she benefited greatly from that.  This time, his focus was to enlarge it to make it even closer in size comparison to her right pulmonary artery.  This took some time as again, when he would pass through her Sano and start to balloon the stent (make it bigger), she would go into heart block.  He said she went in and out of it around six times or so when she was in there.  (Very scary for us to hear by the way!!)  But, he was able to get it closer in size, which was really good!  Some of the other things that he did when he was in there was evaluate her pulmonary veins to look for any stenosis (narrowing/closer/obstruction), assess the function of the heart, take measurements of pressures while he was in the heart, and many more things.  So the results, everything looked really good.  Better than I think any of us expected! (Praise God!)  And they think that right now, she is back on the path of being a Glenn candidate!!!!!!  Now in saying this, we know that there are chances that this will not be a straight forward in and out Glenn like many other hypoplastic left heart infants go through.  Emma still has some things that could make her recovery time longer than normal.  But, the fact that we are doing this procedure is an answered prayer from God!  So, when?  Well it will probably be in a few months.  As for right now, Dr. Forbess sent us home on oxygen to aid in her recovery and put her in better shape for the Glenn.  But it will more than likely be in a few months.  There is really no set date because it all depends on how miss Em is doing.  So in the mean time, while we are waiting, we are just enjoying being home with our sweet little princess and trying to get her caught up on all the things that she is behind in.  Being intubated for as long as she was made her developmentally behind as many could imagine it would.  Emma, when she was extubated would have been on the same level at 6 months as more than likely a 2 month old.  Does she roll over yet, not yet (well she will roll over sometimes from tummy to back if really mad).  Does she stand up with support yet, not yet (just like rolling over, she will put weight on her legs only when really mad).  Does she eat from a spoon, not yet.  Does she do many things an 8 month old should do, not yet.  But, she is here and that's what matters.  You know when I thought about her being that far behind it almost seemed like an ominous task to get her caught up.  But we are trying our very best daily to work with her and make her do more things like an 8 month old should be able to do.  But, in the great scheme of things, being a little behind because she was intubated, and in the hospital, while going through surgeries and many other painful events, pales in comparison to her being here.  We are truly blessed to have had this time with our child that would have been stripped from us if it wasn't for God and Him working though the great people at Childrens!  We look forward to the day when we can show Emma her journey, the ups and downs, the scary times, the happy times.  And we look forward to her being able to share what all amazing things God and so many people have done for her in her life!!

We don't know what the future will bring, and that is scary.  But we look back at all that we have gone through and we see how amazingly strong Emma has been.  As I have said to many people before, Emma has taught me more in the time she has been here than I would have ever learned on my own.  Lessons about the truly important things in life and the blessings that I would so often overlook.  Thanks be to God for watching over her and us through all of this!

A very special thanks to all the doctors, nurses, respiratory therapists, etc. at Childrens for watching over Emma with such care and expertise, over the time we have been there!  You are all truly amazing!

So, until we go in for the next surgery, we are here in Dallas, playing with Emma, laughing, having somewhat of a "normal" life.  We will try to get on as often as we can and update with pics and videos of Miss Em (Our Precious Princess) and her hilarious things she does and the progress that she is making. 

Some prayer requests:
1)  Pray for her next surgery.  That it is a success and her post op goes very smoothly!
2)  Pray for the doctors, nurses, and all the staff at Childrens. 
3)  Pray for Emma to continue to make progress in her development and to do better each day at home.
4)  Pray for Sarah and I to continue have strength for the road ahead.

Thank you all for the prayers, thoughts, and help you have all been!  I hope you all know how much of a blessing you have all been to us through all of this!

Daddy Scott

Emma getting ready to go to the cath lab.

Mommy and Emma in recliner after cath and recovering on 8th floor.

Look at that big girl sitting in her Bumbo.  And, oh yes, she is watching Baby Einstein. :)

Emma going home after being in hospital from cath procedure.

Emma chilling at home in her activity center.

We might skip needed development and go straight to reading! ;)

Me and my sweet Princess outside.

Emma outside by flowers at hospital.

Sweet little Princess!! :)


  1. Praise the Lord, Praise the Lord, Praise the Lord!!!

    I have been so anxious for an update and it was definitely worth the wait! I am soooo thrilled to hear that all went well with the Cath procedure and that sweet, little Emma is back on track for the Glenn.

    I can't stop smiling while I write this. My heart is overflowing. Praise the Lord!

    I continue to pray for your family.

    Joy/Chandler, OK

  2. She is absolutley beautiful!!! so glad the procedure went well and you are back home and laughing and playing and learning! Hugs to you

  3. Oh, I am so thankful it went well. What good news! Will keep praying as she prepares for the next surgery. God has the timing all figured out! Will keep praying for Emma and her mommy and daddy and all the details involved in her journey of life!
    God bless you all big time!

  4. Oh how sweet!!!!!!! Love the updates and the pics. Scott and Sarah, she is such a blessing. She looks so happy. Prayers are with all of you. Kendall and Darla

  5. I have been patiently waiting for an update on Miss Emma! It is great news that you guys will be on The Glenn path!!! As we start our journey home please know that we will still continue with prayers for you & precious Emma, she is such a strong girl & I think she will continue to surprise you with all she is capable of! Our paths will cross again as we are intertwined as parents of these special babies & you guys will never be far away in our thoughts!! Many continued prayers & blessings!!! Love, Janette (( Mason's mommy))

  6. Sarah,
    I had no idea that you had had a baby! I found your blog thru Darla's FB. Baby Emma is so sweet and I can tell that you love her sooo much! Wow, you have been and are continuing to go through such a challenging time. Scott and I will pray for you and your Scott and, of course, Emma. I love the picture of you holding her in the recliner above. She is just precious, and you look as beautiful as always!

    Hugs and prayers,
    Shelly Bolton

    P.S. Tell your mom "Hi" for us, too!

  7. It is great to hear that things are going so well with Emma. She has grown so much!! It has been a life changing experience for me to follow your blog on her since she was born.

    I will continue with prayer for your family. There are many happy memories that still await. I hope you will be able to find time throughout these memories to share them with the rest of us who have grown to love her as well...

    God bless you all!

    With love,

    A forever changed heart...

  8. Scott, you are so right!
    In our daily look at things, it is easy to point out Emma's developmental deficits and to compare her to other 8-month-olds.

    But then we take a giant step away from the day-to-day and consider what her life has been for all 8 months -- the predicted 20% chance of survival at birth, the rush through the hospital tunnel to Children's for her first heart procedure before she was even an hour long, her first open heart surgery before she was 2 weeks old, the times her little heart stopped or beat out of rhythm, the problems with feeding and digestion, the endless five months of intubation, the continuous oxygen, the weeks lying flat on her back while medication dripped through her veins, the months in ICU, the heart caths, the IVs and nasal feeding tubes, on and on and on -- and it is then we gain the perspective we need and realize that, just by being here, Miss Emma Janae is indeed a miracle.

    She is, just exactly as she is, perfect to us. And she is an amazing messenger proclaiming God's love.

    I think of the thousands of voices she has united over and over again, all around the world, in prayer to our Heavenly Father ... and I am humbled at how blessed we all are to have the little Princess here with us. She truly does remind us of the blessings contained inside each day.

    May God continue to manage her days, her development, and her care ... and may He always keep close to our hearts the knowledge of how blessed we have been since the day the Little Warrior Princess came into our hearts and into our lives.

    God bless her ... and God bless you and Sarah with the energy to care for her. What a bundle of love you are, Miss Emma. We ALL love you so very much!
    (from Nana Jana)

  9. We are so very glad Emma is doing so well. We have been following this blog since day one and are always glad when there is a new update. We don't follow Facebook so these are our only updates. She is getting so big and I'm sure brings such joy to your lives. You are in our prayers.

    Elise & John Donaldson & girls

  10. HI
    My name is Jenna and I came across your site. Emma is a cutie, and a courageous, strong, and determined fighter. She is a brave warrior, smilen champ and an inspirational hero. I will be praying for her and you as her parents. I was born with a rare life threatening disease.