Tuesday, April 12, 2011

8th Floor, Home, OH! MY!

Our little family on our first outing outside! 

Many of you have been curious as to how Emma is doing!  I am very happy to announce that she is doing so very well!  While we still have many hurdles to cross, she has surpassed so many of the hurdles that the doctors thought might be hard to surpass without a new heart.

Emma is now:

1.     On only 2 liters of oxygen! (If you can remember, we started extubation at 20 liters)
2.     On BREAST MILK!!!!  (Emma was on a fat free formula for 6 months)
3.     Being fed in the stomach! (Before Emma was fed into the intestines)
4.     Trying baby food (little bites of vegetables and cereal)

We met with our care team last Friday and had a great discussion on where Emma is headed.  According to the team, if Emma continues to do well, then towards the middle to end of next week, we will move to the 8th floor.  We are very excited about this possibility; however, at the same time, we are EXTREMLY NERVOUS.  For the past six months we have been in the ICU under the CONSTANT supervision of many doctors, nurses, and therapists.  While we do basically all of Emma’s care during the day and night, we have learned to rely on the expertise of the ICU team and the love and care they have shown to our little Emma.  We have been assured by MANY people that the transition to the 8th floor should not be as difficult since we already do so much for Emma and that barring no set backs, we should only be on the 8th floor for about a week and then “home.”  “Home” for us will be in the Dallas area until either a) Emma gets a new heart or b) in a couple of months they reevaluate her heart via the cath lab and determine that she is a Glenn candidate (not likely at this point but “never say never.”)

To be honest, I am really scared to be “home” with Emma by myself, but as nervous as I am about it, I am also happy to think about having a “home” and doing normal sort of things with my baby.  We will continue to live in Dallas and have a prospective apartment set up that houses long-term medical families. 

Please continue to pray for Emma:

1.     As decisions are made for her future.
2.     That her lungs will stay open and clear.
3.     That her stomach will tolerate the feeds and she will not have much emesis.
4.     That Emma’s heart rhythm will stay normal.
5.     That a new/perfect heart will be available to her in the right time.
6.     That she will continue to grow bigger and stronger as well as catch up developmentally.

Also pray:
1.     For the family who will be donating their child’s heart.
2.     For Scott and I to have the wisdom, strength, and courage to take these next big leaps in Emma’s care.
3.      For the other CHD families and their CHD warriors.
4.     For Emma’s Aunt who is battling Thyroid Cancer!

Thank you so much for all of the continued prayers and support.  We love you dearly!

Emma’s Mommy ~ Sarah  

P.S. Emma has taken a few field trips...enjoy the pics

Jeremiah 29:11

God is good!  All the Time!  God is good!

Some of the nurses gave me a 6th month birthday!  I loved my cupcake!

Cool dude in her first trip outside!

First family photo!

New Mommies!
Gramma and Grampa with their grandkids!


  1. Wow! Things are starting to move ahead. I am so happy for Emma's progress. I can't even begin to imagine the concerns you have about making a move, though. God is still in control. He will continue to be with you each step of the way.

    Thanks for sharing the pictures. Emma is adorable. I continue to pray for you all daily.

    Joy/Chandler, OK

  2. Praise God! Saw your story on our local news, have become addicted to your blog, and praying for you daily....God's Blessings to you and your family!

  3. Such wonderful news! Thank you for sharing your lives with us. We pray for you all daily and are so happy to see such wonderful happenings! Love the pics!!

  4. Wow...such good news..praying all goes well and the transition will be without complications. Praying God will be with Emma and the plans He has for her. Praying He will give you and Scott peace and courage, wisdom and strength as you go to the next step in Emma's journey.

  5. WAHOO!!! This is SO AMAZING! We are so so so so happy for ya'll!

  6. Oh my goodness Sarah! I can't believe it! What wonderful news! I honestly have tears flowing down my face knowing that our powerful God has such a hand in showing us His glory in little Emma. To see your family photos is such a joy to me and to know that you get to move to the 8th floor and home is so joyful! I will continue to pray and hope she gets a new heart soon so there won't be anymore "waiting". Lots and lots of love and hugs! Yay!!!!

  7. That is one good looking family! We are still praying for you and will never stop!

  8. Thank you so much for sharing these photos and updates! You have such a beautiful family! We continue to pray for Emma, her family, nurses, doctors, and all care givers for wisdom and strength. God does answer prayers as evident in these pictures!

  9. Congratulations what exciting news!! Emma is so strong and she is showing the doctors who is really in control. God is so amazing!
    Sarah I know is scary to be told by the doctors that you're ready and that Emma is ready. You are an amazing Mommy and you'll be amazed at how fast ICU life becomes a memory and life at home is the norm. I don't know how many meds Emma has when Weston came home he had quite a few, I made a chart to help me keep everything straight. Continue to stay strong and courageous.
    You all are continually in our prayers.

    The Rogers Family

  10. WOW! What a wonderful update. She looks like a little "beach baby" in her sunglasses. We continue to pray that she continues to improve and get stronger and stronger. Love to you all, Kendall and Darla

  11. She looks adorable in her stroller! :)

  12. Love the chocolate cupcake face!! Every baby must have this wonderful fun time.

  13. Praying for you little Emma!!! *hugs* Sounds like things are looking UP! Which is WONDERFUL!!!