Tuesday, October 26, 2010

Update on Miss Emma

Yesterday was a good day!  Sarah and I got to hold our precious little princess for a while and then she went back into her display case or grow box, whatever you want to call it! Hehe!  She has now found what they call "the doghouse."  This is a plastic cover on one of her peripheral iv lines on her hand.  She likes to lick and suck on it.  Funny little girl, won't take a pacifier, but loves her "doghouse!"  :-)

She had a good night last night.  She was bright eyed and beautiful for a long time before she finally went to sleep!  It was AMAZING to see her like that since she hasn't been that way in days!  We switched to a new Giraffe bed (aka "Grow Box") last night as well.  The other one did not have a cord for taking her weight.  So they moved in this other Giraffe bed and went through the crazy process of switching beds.  Always nerve-racking!  But they got her moved and guess what!  The cord that just wasn't there, was hanging down on the side of the other Giraffe bed...........................  Oh well, they were pretty positive that it didn't work.  So now she has a much newer, less smellier bed.  ;-)

So this morning we were awoken to some more bright eyed moments with our sweet little daughter!  The doctors last night decided again that she was losing so much fluid out of her chest tube because of breast milk.  They had thought this a couple days ago but thought they would give her another chance on breast milk.  So they switched her to a formula again last night around 10 pm.  This morning she is losing much less out of her chest tube and so they are thinking about pulling out her last remaining chest tube today or in the morning.  She is up to full feeds on this formula which is great!!!  That means no more TPNs as long as she stays on full feeds!  That truthfully means less IVs, which is always good!

All in all, another good day yesterday!  God is good!!!!!

Specific prayer requests:
1)  Pray that she keeps having less and less of her a. flutter.  She rarely has little runs of it now, but pray she will be a. flutter free!
2)  Pray that her heart continues to function well. 
3)  Pray for her lymphatic system to heal quickly so she can get back on breast milk.
4)  Pray for her lungs.  That they will remain up and working properly.
5)  Pray for her growth.  Pray that she continues to gain a consistent amount of weight!
6)  Pray for the doctors, nurses, and all the staff taking care of Emma.
7)  Pray for Sarah and me to continue to have strength and peace for the road ahead.

God is good, all the time!  And all the time, God is good!  He is in control!


Daddy Scott

These are the eyes we got to see this morning! :-)
Yesterday's bow and bright eyes!

After bath and bed exchange-- Crazy hair!

9 comments:

  1. Wow-Miss Bright Eyes-thankful for answered prayers. Keeping Emma lifted up that the drain tube can come out, she will gain wait and everything else will fall into place. God is good!
    Read this verse this morning and thought of you,
    "God wonderfully comforts and strengthens us in our hardships and trials." 2 Cor 1:3
    Angie-Ada

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  2. Wow look at those pretty eyes this morning. LOL she says that she doesn't need a pacifer as long as she has other items she can use. :) Besides, I think it would be a little awkward with the breathing tube in her little mouth. What do I know huh. Anyway, I am so glad that everything has been going her way this week.
    Love,
    Karla

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  3. I had pulled up Emma's blog to read while the kids were getting ready for recess and they happen to see the one of her with all her hair showing and no bow!! Hope (one of the twins) said, "Wow, she looks crazy this morning!" Made me laugh and hope it does you too! Love seeing those bright eyes! Hope you all have a blessed day! Grow, Emma, Grow!
    Love,
    Darla

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  4. We had the same problem with milk leaking out the chest as well. We were on special formula and it made a big difference and we gained much better. Wow, I read a lot of blogs but yours is just different. All I have to do is go back one year from now and I am exactly where you are, feeling the same feelings. I so understand the frustration you are feeling. It is such a helpless feeling, like you are spinning and spinning and no one can stop it. I am sure that your mind runs non-stop with the what if's and different scenarios that could happen. You may not want my advice, but here it is. The doctors and nurses at Children's are WONDERFUL, the best staff there is...with that being said, you get a different doctor every few days and this can be very hard to deal with because they normally change plans that the other doctor said would happen. Also, you probably get several different nurses and though they are all great, you have your favorites that know your daughter better. Ask for a care team, make a list of the nurses you prefer and they will try to make sure you get those nurses at all times. It makes A WORLD of difference! And they will help you in wrangling doctors into keeping their plans for your child lined out. Also, write down everything they plan so that if you have questions you also have the comments to back it up. I know that you are having a hard time and I feel so much pain for you. PLEASE remember that I would be more than happy to give you any advice. My e-mail is amy.young@ectorcountyisd.org. Prayers being sent your way!!!

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  5. I am so sorry to hear about the issues you are dealing with right now. I know it is so hard! My son also leaked milk out of his chest. We switched formula and it helped him to gain weight. I also understand your frustrations with the doctors. I was right where you are right now just this time last year. I have some advice on how you can make things a bit easier when it comes to the doctors and nurses. If you are interested and have time please e-mail me at amy.young@ectorcountyisd.org
    Prayers being sent your way!!!!

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  6. What beautiful eyes! love the crazy hair!!! God is so good and Emma will be a testament of how powerful and loving He is.

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  7. Her eyes are gorgeous...they are much bigger and brighter than they have been. She is just beautiful! I am so relieved to hear your good news this morning and will continue to pray for all of your specific requests. I know that the two of you feel blessed beyond measure, but little Emma is blessed as well to have the two of you for her parents...you are both truly an inspiration to all. Thank you for sharing her with us...we are loving her from a distance and cannot wait to meet her in person one day soon. Love to all of you.
    The Brown family

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  8. Wow, those eyes melted my heart. I am so thankful for the positives going on for you all right now. I feel in my heart she on her way to recovery. You two stay strong and try to rest. You are all blessed. Love you
    Sheri and kids

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  9. Elise & John DonaldsonOctober 26, 2010 at 8:46 PM

    Emma looks beautiful! Her eyes are gorgeous. We are so glad to hear the good news. Y'all are such strong and faithful parents to your baby girl. I follow her blog daily. I'm sure holding her was pure joy, indescribable love.
    Praying often,
    Elise

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