Worth it

November 23rd, 2011

My friends, I am truly sorry to have left you hanging so rudely right at this spot.  I have not had working internet or computer for two days, and believe me, I have been feeling the responsibility like a heavy weight.  Joe came tonight to pick up the non-functional laptop and leave our old one here with me.  The old laptop is not letting me access the photos, so they will have to wait until I can get tech support from Joseph when he is awake tomorrow morning.

If the current internet access holds until tomorrow afternoon, I hope to catch up then on all the waiting emails!

Katie has gone from 5 to 20 mLs/hour of food continuously through her NG tube since Sunday, with the plan to increase by 5 mLs/hour per day until she reaches 45 mLs/hour.  Today she reached 25 mLs/hour, and all her labwork shows that she is handling the increase very well so far.

Some of you may be interested to know that her nutritionists are estimating that she was receiving about 600 calories per day on the diet that the orphanage was giving her, and it was severely deficient in many vital nutrients.  For instance, her gums are swollen, inflamed and bleeding due to a serious lack of vitamin C in her diet, and she is currently receiving doses of ascorbic acid three times a day through her NG tube.

When she reaches 30 mLs/hour, they will be adding 5 mLs of my milk every hour as an injection via syringe into her NG tube.  This injection of food into a feeding tube using a syringe is also known as a bolus feed.  This is how we fed Katie last week, and how we fed Verity last year during the weeks she had an NG tube.

Tomorrow, there will be an interruption to Katie’s progression toward more calories.  After midnight, she will receive only IV fluids until her PICC line is placed sometime during the day on Wednesday.  This is a procedure that will require her to be under anesthesia.

In order to enable the doctors to keep close watch over her electrolytes and blood sugar during this crucial time, as well as begin to rule out a long list of possible health issues, Katie has needed to have so many pricks and blood draws that she is quite speckled and bruised.  Her list of necessary blood work is so long, and her available blood supply so small, that this procedure will go on for some time to come.  The PICC line will provide comparatively safe access to her blood without traumatizing her every time.

A long succession of specialists have come to examine our rare treasure over the past three days.  The highlights I can think of right now~

Katie’s heart is perfectly normal.  Now is the time to tell you that we were aware that there was a possibility that she would need open heart surgery, so we are thankful to learn that her heart was better than her official medical report stated, and not worse.  This also reveals to us what we suspected–the unlikelihood that she was actually examined by a cardiologist annually or received an echo as her medical report claimed was the case.

Her bones are so porous due to malnutrition that they are like the bones of a little old lady with osteoporosis.  Her spine shows that she has had multiple compression fractures due to improper handling of her fragile bones.

Not surprisingly, during this hospitalization, Katie has regressed in her attachment process.  She was very cranky during all her waking hours on Tuesday.  I have so much more to write about this, but, uh, yep–it will have to wait as well.  Katie just needed her whole bed changed, I haven’t slept yet tonight, I need to put away the milk from the last pumping, wash bottles and pump parts, get myself ready for bed, it’s past 1:30 am, and 4 am is coming soon!  And she is beginning to fuss again.  As one of my new friends recently said, “This is the hardest work I’ve ever loved!”

That’s all I can think of that should be in this initial update, except to ask for prayer for all of us right now.  This tough time is temporary, and YES!!!  It is worth every difficulty!!!!  And we appreciate your prayers more than I can adequately say.  If I try to verbalize it, it comes out in tears instead of words.

My prayers these days are simple.  “Help!”

I am determined that my next blog post will be a joyful one.  But you are also welcome to put your questions into emails and comments for an upcoming Q & A.

Thank you, friends.  Bless you.

“He shall call upon me, and I will answer him; I will be with him in trouble…”

 

 

 

 

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63 Responses to “Worth it”

  1. Joy says:

    Oh, Susanna!! Thank you for updating us. It is so helpful to know how to pray. But please don’t ever feel that it is a weight. Let the ‘wait’ be ours!

    My heart breaks for the injustice that has been done to Katie (and oh, how the mama bear rises up inside of me!) I am so thankful God has placed her in your family and that she is being taken care of. I, too, am interested to know if her bones can/will/should improve with proper nutrition beginning now.

    I pray for rest for you, for special grace for your family during this time without you and you without them, for Katie to grow in leaps and bounds (or even slow and steady!) and that she would flourish in spite of all that is against her.

    I love you and am with you in spirit (all the way over here!), dear friend. 

  2. Gwendolyn from MOMYS says:

    I’m so happy to read that Katie is handling the increase in calories well.  I am so sorry that you are having computer problems, and I’m so anxious to see photos of Katie with her new brothers and sisters.  Thank you for letting us be a part of your family’s journey by reading and praying for you all.  Have a blessed Thanksgiving.
     

  3. Shari says:

    Hi Susanna – Thanks so much for updating, please don’t feel bad about doing so sooner…but I do love to read those Katie updates! I wanted to let you know that my perfectly well-nourished 8 year old was recently diagnosed with Osteoperosis as well.  This was shocking to me (I had no idea kids could get Osteoperosis, especially well-nourished ones!) and we are still wading through the testing but from what I have read it should be damage that can be repaired, particularly if there isn’t an underlying disorder causing malabsorption (which it doesn’t sound like there is in Katie’s case since hers is malnutrition).  Anyway, hopefully that will encourage you some.  I know this is a tough time but I think the update was amazing – no heart condition WOOHOO!

  4. Jennifer says:

    Prayers for endurance and strength.    And our family of 8 will join the many who will continue to do so for a long while.     With 5 adopted children (two from Bulgaria) we “get” tough it is to bring a new child home even under the best of circumstances so we can only begin to imagine how much harder it is in your current situation.   So, our prayers are for your sweet girl AND for you and the rest of your family who are separated during this hosptial stay. 

  5. Tami C. says:

    Bless you, bless you, bless you… and a multitude of prayers for all of you.  And as said before – do what needs to be done for Katie, and for yourself that you may have strength to be what you need to be for her right now.  We are anxious to hear how she is, but it is more important that you all are cared for.  Don’t feel you must add more to your list to satisfy us; Katie needs you more, and maybe even a few other people. ;)  We can wait as needed.  :)  Just so relieved that she is getting care…  poor dear sweetheart.

  6. Joy McClain says:

    I am so, so glad you guys are all safely here in the U.S. and your sweetie is receiving good medical care.  May Jesus continue to hold you snugly in His big, strong arms.  Please get as much sleep/rest as you possibly can.
    Love,
    Joy

  7. Barb says:

    Amen, Dr Judy!!

  8. Gail says:

    Joy – I believe God is so big that if we  pray for healing for Katie her bones will be restored.

  9. Brenna says:

    Praying, praying, praying. We will continue to hold Katie and your family up to the Lord in this journey of recovery and attachment. Hugs!

  10. Tami Swaim says:

    Ah, yes, the PICC line.  They finally put one in for Josh when they ran our of veins for IVs.  Out of the whole hospital experience Josh says that their last IV try before the PICC line was the worst for him.  But once that PICC line went in he FINALLY started looking like he was going to pull through his failed condition.  I will be sure to update the boys because they’ve been praying for Katie. 

  11. Bernadette says:

    Hi Susanna, Thank you SO much for the update – another thing for you to think of right now, so don’t worry about ‘us’. Will keep praying. I wondered if Katie’s initial reluctance to be handled was down to rough treatment. If, as you have said now, the doctors confirm multiple spine fractures, that would have caused yet more pain. Obviously her last baba was far more caring and gentle. Being in hospital may remind her of the orphanage. It will take time for her to adjust to the differences, though hard for you if she’s cranky. Will she need to remain in hospital long term or will you be able to have her at home some time soon? God has worked so many miracles for her, I believe He will continue to do so. Thank you for all you are going through and doing for this precious child. She is beautiful, and so are you. Try to rest in the Lord. Will keep praying for you all.

  12. Laura F. says:

    Susanna, thank you for this update.  I so appreciate you taking the time to do this and want you to know that none of us wants you to feel any pressure to do so when you are doing so much right now.  We are praying constantly!  I was heartbroken to hear more details of Katie’s treatment (really, neglect) and its effect on her.  To think that every time she felt touch, it hurt just breaks my heart.  I am even more in awe of her tremendous spirit that she knows a loving touch now and embraces it.  She IS a survivor.  And in terms of her fussiness, I remember when Ian was in the PICU after his heart surgery at not even 4 months of age.  Once he was off the vent and awake, it was so noisy and loud and they were poking and prodding him and he was not happy at all and not able to get any sleep.  When we finally got into a quiet, cozy room and his needs required less poking and prodding, my little guy reemerged.  Bless you that you know and understand what she is going through.  This post was full of hope and unconditional love.  Thank you. Hugs and prayers, Laura

  13. Holly says:

    Although the updates are something I crave, please do not feel guilty if you cannot do so.  I think I speak for everyone when I say Katie is our NUMBER ONE concern and reading updates is a distant fourth to you loving on her, taking care of yourself (which includes sleeping), and keeping up with all other responsibilties that unfortunately, do not stop no matter how busy a person is.  Although I suspected it, I cried to hear about her bones, stress fractures, and calorie intake before being rescued…but I REJOICE in the PICC line, that she is tolerating the calories, and that her heart is fine!!! 

    A few days ago, I sat my two older children (11 and 7) next to me and explained Katie’s life.  They adore their younger brother (with Down syndrome) and naturally love others with Ds at first meeting.  But I felt it was time to introduce to the darker side of the world.  For now, I am only sharing Katie, as she has been SAVED.  There will come a time when I will share the ones that have not, but for now, know that Katie is touching their hearts too.  And when the Lord decides to move my husband’s heart to adoption, my children will already have the fire in their heart to welcome our own little bird.  God bless!

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