Wednesday, November 10, 2010

Slow and Steady

Well, in this journey we are on with Miss Emma, we have our ups, downs, and leveled out times.  We are currently riding in the level area.  We knew that we might have to be in Dallas for six months, but we really did not think that we would be in the hospital that long.  However, it is looking more and more like we will be in the hospital for at least a few more months if not until the Glenn.

 In utero, Emma had a restricted atrial septum, which messed up her blood flow.  This blood flow problem caused damage to Emma’s pulmonary lymphatic system.  To add insult to injury, during the Norwood procedure, Emma’s lymphatic system was accidently nicked.  Now, understand, that we knew she could have some lung damage and that during any surgery other “things” could get accidently damaged.  I mean, we are talking about working on something the size of a strawberry.  What happens when the lymphatic system gets damaged is that fluid leaks into the chest cavity.  Also, it prohibits fat from being processed so it leaks into the chest cavity as well.  So, Emma is on a “fat-free” formula given to her through her feeding tube, and receives lipids (fats) directly into her veins.  Today, that put her back up to 30kcals and 3 on her lipids, so she is at optimal calories and fat intake right now, which is good.  Apparently, it takes the lymphatic system a few months to repair itself and that only really happens when the baby is receiving good nutrition.  So, Emma is now getting good nutrition, which means we must now sit back and wait for the lymphatic system to heal.  As long as the lymphatic system is leaking, it drains fluid into her chest cavity, which affects her lung function.  As you can see, it is a cycle---one that can be highly frustrating at times.   

However, we have a lot to be thankful for.  Emma’s heart is functioning well and her scar is fading fast.  Emma is proving to us that she is a fighter and that she is treating this journey like a marathon, slow and steady.  She has begun receiving occupational therapy, physical therapy, and massage therapy.  She is tolerating these therapies well, and I am even learning moves to do with her to help strengthen her little muscles.  We are very excited that Emma is tolerating her feeds well and is obviously digesting her food well…lol…we change many poopy diapers. 

So, Scott, Emma, and I will be in Dallas for a while.  How long will we be in ICU?  That is hard to say, but I don’t expect us to be out of ICU by Thanksgiving.  At times, this is disappointing, but we have to remember that Emma does better at a slow pace.  God is in control and has our best interest at heart.  And, ultimately, Scott and I want Emma to get better however long that takes.  We appreciate the doctors and other medical staff for their continue care over Emma, and the continued prayers, support, and kind words from all of you.  There are frustrating times, happy times, exhausting times, funny times, loving times, etc.  Emma is our little princess and brings a love into my life that I did not know existed.  We look forward to the day when we can introduce her to everyone, but until then, we “share” her with you via the blog.  Please keep praying, it would be so nice to be extubated within the next two weeks .

God is good!  All the time!  God is Good! 

Specific Prayer Requests:
Pray that Emma will continue to breathe over the vent.
 Pray that the fluid in, on , and around her lungs will continue to decrease and go away.
Pray that Emma’s heart stays arrhythmia free.
Pray that the doctors can find a good pain/sedation balance with new medications.
Pray that Emma will tolerate the tolerex formula and hold her food down and properly digest it.
Pray that Emma’s sats, neer, labs, etc. stay good.
Pray that Scott and I will have strength and patience for this journey.      

P.S.  There are days lately that are stable and uneventful (which is good), so if we don’t update the blog please know things are ok. 

Mommy (Sarah)


  1. Scott and Sarah, We are so thankful that Emma is doing as well as she is right now. It is wonderful to read the blog and see her picture and those "bright eyes". And above all......thanks for letting us all know that if we don't hear from you, that things are ok. That is a relief to know. There are days that we check the blog 3-4 times and wonder wonder wonder if all is ok. We all know that you are busy with that precious little angel. Stay strong and know that we are all out here praying. What a journey this has been for you guys. We are praying that you can get some much needed rest. Know also, that those little close up pictures are so much appreciated. She is beautiful and precious. What a wonderful Thanksgiving you will have just being there with her. Love to you

  2. We are praying everyday... We know you are soooo ready to bring her home!

  3. Thanks for updating..I too check frequently to see how Emma is doing..also how you and Scott are. I thought of you today at Bible study when this verse was read "He gives strength to the weary and increases the power of the weak." Isaiah 40:29. God will see you through..that is what He does best.

  4. God is the great physician and nothing is impossible with him. Continue to believe in God's ultimate plan for precious little Emma. I pray for strength and courage for your family..

  5. Sarah, Scott and of course, Baby Emma,
    we love you and are praying everyday for you. I keep up with you through Facebook and your blog. I can only imagine what you are going through. Emma is a beautiful child and I love her eyes. Next thanksgiving she'll be up and running! Your courage,strength, and most of all your reliance on God has helped so many people become stronger in thier faith and through thier trials. I pray that God gives you the comfort that only He can! In Christ, The Terrell's

  6. I'm praying for you today.

    Kerith Leffler

  7. Looks like Emma was feeling pretty good when you took the picture. Those eyes tell me what kind of day she is having and I love seeing her like this. Go Emma Go!!!!!!! Thanks for being who you are Sarah! Love you guys dearly.


  8. Praise the Lord for poopy diapers!!!! That may sound odd, but in the big picture that is very important to Emma's healing process. It is so good to hear the update even if it is small progress. At least now they have identified the source of some of the issues Emma is facing. Instead of treating a symptom, they are able to actually treat the problem. Praise the Lord for that step in the right direction.

    I continue to pray for Emma, for you guys and for her medical team daily. I love when you update, but it is good to know that no update means things are going okay.

    Thanks for sharing a recent picture. Emma is beautiful. I look forward to the day you are able to share a picture without the vent in place.

  9. We continue to pray for everything you ask. What a sweet picture of Emma. Kendall and Darla

  10. I love reading about your beautiful, precious baby girl every day. You are in our prayers.
    Steve and Betty Johnson