Thursday, October 28, 2010

The Long Road of Recovery

I guess there comes a point when you start to realize as parents that this road of recovery is not what we expected.  They said that it would be a roller coaster of a journey.  And those who said it were right.  Emma has amazing days, days where you feel so great that she will be out of here in no time.  And then she has days where it looks like we may be here till the Glen procedure.  And its times like those that your morale starts to fade.  Sarah and I are so ready as parents to be parents that it is so hard day in and day out to see our child like this.  We just want to pick her up, hold her, kiss her, hug her, and tell her everything is going to be okay.  At this point in time, we can not do that.  It's hard.  I don't think there is any amount of preparation that can prepare you for the constant grind and emotional stress that it puts on you as a parent watching your child go through more in their 24 days of life than I will every go through or have gone through in mine.  It's simply hard.  In saying all of that, I know that we have an amazing God that is watching over Emma, who never feels worn out, and who is always helping her.  He is who we lean on for strength.  I don't know how we could make it through this journey without leaning on Him!  He gives Emma strength and when we lean on him, He gives us our strength.

Emma is having one of those days where she is not really doing leaps and bounds better, but she is not doing leaps and bounds worse.  The doctors constantly remind us that this is normal.  (Another constant reminder that sometimes what we want for us and Emma, is not how life goes!)  They say that every hypoplastic child has ups and down days and that we should prepare knowing that that is the case.  But they also constantly remind us that given her severe condition, we are doing great!  I think the hardest thing is seeing the end result.  As parent's I think its easy to get caught up in the day by day little stuff, that we get the end result clouded.  So, every time I think how much I want Emma to be at this point, I step back and think of what the doctors tell us and it gives me peace to know that they feel she is doing good.  And then of course, I pray.

They have stopped her feeds again.  They think that they want to watch her stomach and digestive system closely to make sure that it is functioning like it should.  They have also added another antibiotic to her regimen of medications.  They are still concerned that she may be having some sort of infection and so they want to cover everything they can.  They want to start weening her and starting little trials of breathing to get her ready to be off the ventilator, but they stated today that they will not pull her off till they notice a good amount of weight gain.  So, we will see how she does with gaining weight.  They are trying some new regimens for her nutrition to try to maximize the amount of calories and fats she is getting.

All in all, she is doing good.  Just a long road of recovery.

Some specific prayer requests:
1)  Pray for her nutritional status.  Pray that she starts gaining weight and that she can tolerate her oral feeds better.
2)  Pray for her to be infection free and stay that way.
3)  Pray for all of her labs, sats, and other vitals to be great and where they need to be.
4)  Pray for her to start steadily recovering and not take steps backwards.
5)  Pray for her to be peaceful and rest, so that her body can gain the weight that she needs as well as not have to work too hard.
6)  Pray for the doctors and all the medical staff that are making decisions, that they will be guided by God's hands and that they will help her get to where she needs to be.
7)  Pray for Sarah and I as we are indeed in the long journey with Emma.  Pray that we will have strength and peace for the roads ahead.  That strength and peace that can only come from God!

God is good, all the time.  And all the time, God is good.

Daddy Scott


  1. I know that you both have to be physically and mentally worn out. You are so right in knowing who to turn to when you are at the end of your rope. He will see you through! We are continually lifting both of you up along with little Emma. You are both an inspiration to anyone who has followed your blog weather they know you personally or not. You have had more thrown at you in the short period of time that Emma has been here than most parents do in a lifetime. You have handled everything with such grace and faith that we cannot help but be inspired by you and how big and gracious our God is. Through you sharing Emma's story, we are truly blessed to see His miracles in your life...some days smaller than others, but miracles just the same. Hang in have so many people praying for all of you and loving you. When you hurt, we hurt with you...when you weep we are weeping with you and when you cry out to Jesus...we are crying to him as well! Love and hugs to all of you!

    The Brown Family

  2. My heart hurts so bad for the three of you. I know you want to hold that precious baby so badly. Hang in there. She is precious it is truly worth it. I know you get tired and I know it has to be hard to watch that poor little baby go through all of the things she has to be put through. Hang in there you have so many people praying for all of you. Connie Smith, Ada Ok

  3. Scott and Sarah,
    You both are in our prayers. The journey of having a critically ill baby is the most difficult and the most helpless. Nothing and no one can prepare you for it. I think the hardest moments are the two steps forward and three steps back. Especially the days when you want to hold and touch your baby and they are having a picky day when if you touch them their stats drop. I praise God that He can take our burdens and that He holds us, as only He can. We pray that Emma starts gaining weight and that she continues to get stronger and stays away from infection. You both stay strong and know that the day will come when you look back and wonder how did we make it and see a healthy smiling girl looking back at you and you know it is all by the grace of God.
    Thinking of you all continually and praying for strength through these ups and downs.

    The Rogers Family

  4. When you say "Pray for Sarah and me," I know that you are exhausted, and that's when I pray all the more for God to remind you to be "leaning on His everlasting Arms."

    Truly, I am amazed at the strength that Sarah and you have shown since moving to Dallas over six weeks ago, away from family and friends, into a huge lonely city and a hospital filled with cribs of really sick children! That is a difficult environment for sure.

    In fact, as a mom, I used to get so worried when you or your Sissy just had bronchitis, Scott, and I cannot imagine staying focused for so long and not showing periods of physical fatigue and mental exhaustion as you help Princess Emma face her foes day in and day out, fighting off bad equipment failures, infections, setbacks, uncertainty, etc.

    Just know that from the world's viewpoint, you and Sarah are doing an AWESOME job as Emma's parents. Your faith that God will see you through keeps you going long past what is expected, and your ability to "lean on His everlasting arms" will continue to sustain you both and keep you focused on this journey.

    Too often in life's journey, we look far down the road at destinations and forget that life happens only 24 hours at a time. Today is the only day you have to face; yesterday cannot be reclaimed, and if, Lord willing, tomorrow arrives, then it will be another TODAY all over again.

    So think only of now and what can be done in this short time period; you and Sarah try to find some rest when Emma rests; and above all else, remember that you have God beside you, His Comforter inside you, and a huge band of prayer warriors surrounding you!

    We love you three so very much!
    MOM/Nana Jana

  5. Many prayers coming your way. The road is long, but it is so worth it when she comes home and you can hold and cuddle her all day and night.

  6. Dear Sarah and Scott, Words simply cannot describe how my heart breaks for you. I feel your pain and agony through your words today. You are extremely tired and the emotional roller coaster is started to wear you down. What you are feeling is normal. I felt that way when my mom was at Mercy for 6 weeks. There were days I just literally wanted to scream out as loud as I could. But, then I would remember who was in control and he indeed, pulled her through. It is so important for you to try to rest and keep up your strenth as much as possible. Lean on your family, friends, each other and God. Just know you are all so loved and have and endless number of people praying for you. We love you so much. Sheri and kids

  7. Thank you both so much for keeping us all informed about what is going on. This is the only way we can know. You had some beautiful messages sent your way today on this blog. Everyone wants to lift you all up as best we can. You both have shown unmeasurable strength. It is all because of your faith in God. Better days are ahead for all of you. We understand that the "normal" things to the doctors are "major" for you. You are looking at things from parents point of view. They are looking at it from a medical point of view. Emma has a long way to go, but look at how far she has come. Prayers and many good wishes to you all.

  8. understanding and praying ~The Burks

  9. Nothing I can say will change the situation..or make things better, but hopefully a little encouragement will help each day. God sees and knows each thought and tear. I pray He reveals Himself to you in an awesome way.

  10. We are praying for all of you. Love, Kendall and Darla

  11. Doctors have come from distant cities
    Just to see me
    Stand over my bed
    Disbelieving what they're seeing

    They say I must be one of the wonders
    Of god's own creation
    And as far as they can see they can offer
    No explanation

    O, I believe
    Fate smiled and destiny
    Laughed as she came to my cradle
    Know this child will be able
    Laughed as she came to my mother
    Know this child will not suffer
    Laughed as my body she lifted
    Know this child will be gifted
    With love, with patience and with faith
    She'll make her way

    You are in our prayers.
    Ramey, Steven, Aidan, and Emma Rae

  12. I have been praying for you all on this long journey and followed this blog and will keep praying.

  13. I'm praying for you all.
    Kerith Leffler

  14. My heart hurts for you. We try to understand what you are going through but we don't and I don't have words to make it better. I pray that God will give you the peace and wrap His arms around your family to give you the comfort that only he can. As I have a child with so many disabilities, I can tell you that the good out weighs the pain. We love you! Karrie Terrell and the boys.

  15. I, too, have been following your journey. I check the blog several times daily, anxiously hoping to hear some news. I rejoice in your triumphs, my heart breaks for you when the report is not so good. I pray continually for Miss Emma and for you guys. Hold on - God has a perfect plan and nothing takes Him by surprise. Miss Emma is a precious gift from God. I will continue to pray for God's peace and strength to keep you strong as I also pray for your precious gift from God to receive His healing touch daily.

  16. I know exactly what you are going thru and I pray for you, Sarah, and Emma daily. This time last year I was in the same state of mind as you. My little Emma Jo was hospitalized for 8 weeks at Dallas Childrens. We had so many ups and downs....a roller coaster is exactly what it is. We had problems weeing off the vent, her cardiac line came out and was draining fluid into her chest cavity, and she was diagnosed with "NEC". We even made three attempts to move onto the 8th floor but a problem would occur and keep us in ICU for another week. I know how stressful it can be but I just wanted to let you know that I think you and Sarah doing great. I read your blog daily and I cry when every scary or exciting moments happens. Emma is blessed to have strong parents. Keep your head high and know that you are doing the best that anyone could do.