Good Vibes for Friend's Baby **updated 11/9**

    • Gold Top Dog

    Good Vibes for Friend's Baby **updated 11/9**

    My co-worker's wife had a baby girl about a month ago.  Her name is Eleanore ("Ellie";).  When she was born, she was not breathing right and they also noticed she does not have the proper responses to stimuli.  After she was stabilized, she was transfered to the local children's hospital so they can figure out what is wrong.  It's been a few weeks and after extensive genetic testing and seeing specialized doctors, it appears that she has two problems: 1) there seems to be something wrong with her brain stem.  Her brain looks normal, but the signals just aren't getting through to her body.  She does not swallow and would choke on her own saliva.  In her pictures she looks like a normal newborn except her arms and legs are flopped open; she won't curl into fetal position.  She has very low muscle tone.  She will not develop any abilities beyond what she has at present.  2) There is some problem with the part of the body that is in our throats that helps with breathing, swallowing, and making sure when you breath you don't swallow and when you swallow your lungs are cut off (sorry I don't know any of the correct anatomical terms).  So far, the implications look like she will likely develop chronic pneumonia from the throat problem and will never physically develop properly b/c of the brain stem problem.  A few days ago, the parents were given the choice to let Ellie go but they have decided to keep her around and see how she does.  She had a trach put in and is breathing without a respirator but with "positive pressure".  They are probably going to insert a G-tube soon (I don't know what that is...a feeding tube?).  Anyway, any prayers and vibes would be appreciated.  They would like to get her fixed up enough so they can take her home and care for her one their own for the little while they have.  They are continuing with genetic testing to make sure there will be no implications for future children and we hope that Ellie's problems are not genetic (so far it appears that they were caused by some trauma in the womb - a stroke perhaps).

    • Gold Top Dog

     Oh my gosh....I'm so sorry for your friends, Liesje.

    I'm sending positive vibes that little Ellie can spend her remaining time at home in the arms of her parents.

    What a devastating story.....my thoughts are with her mother and father, too. 

    • Gold Top Dog

    Prayers and good thots for this baby and her family -- such things are heartbreaking and can be a huge challenge for a family to weather (spiritually, emotionally, and physically as well as financially).

    At such times I'm so glad I believe that the "Alpha of all Alphas" (and I mean that in NO disrespect whatsoever -- it is, for me, a reminder to trust Him as I hope my dogs will simply trust me) has things firmly in His control and His love knows no boundaries at all.

    • Gold Top Dog

    Thank you, Kate and Callie.

    Callie, they are quite devout Christians as well and I believe made their decision to continue with Ellie's treatment largely based in spiritual instinct.  Based on their blog entries, I think they feel the same as you.  I'm a Christian too but I'm impressed with their positive outlook.  I go NUTS when I can't control something, even something as insignificant as my laundry.  I hope if something that terrible ever happens to me I'll be able to find some inner peace.

    • Gold Top Dog

    Liesje, it's exactly those things that stretch your spiritual being and *force* you to grow.  It's when you have to sift thru and decide what IS priority -- that's when we grow.  It's when the most important decisions and lessons take place.  But the thing is, we never get them until He knows *we* are ready. 

    • Gold Top Dog

     How heartbreaking...prayers are coming for Ellie and her family...I can't even imagine... 

    • Gold Top Dog
    This has made me count my blessings.  I feel terrible for your friends and poor little Ellie.Sending very good thoughts their way Sad
    • Gold Top Dog

     Poor little Ellie. It must be so hard for the family. We're sending prayers and nuzzles.

    • Gold Top Dog

    So sorry to hear this,I'll be praying for that little one. My daughter does MRI'S on children and I can't tell you how many times she comes home so depressed or calls me in tears because she knows the outcome for these children.I never know what to say to her except to pray for them and hope they don't suffer. I can't imagine what the parents must be going thru. I don't know why, but God has his reasons.

    • Bronze

     

    Praying for elly and her family.  Our God is good and even when we don't understand, His plan is perfect for each of his children.  I know He still does miracles and am praying for one for this family!
    • Gold Top Dog
    How very difficult, my thoughts are with them. PS: G tube is a gastric tube, tube that goes in the stomach via the abdominal wall for feeding, prevents aspiration. The one they used in kids is called a mickey or a button.
    • Gold Top Dog

    Update

    The baby is now home.  It is difficult for the parents b/c so far the home care nursing company has not met their standards and also the baby sleeps all day and is awake at night.  It is hard to wake her during the day b/c 1) she has severe hearing loss and 2) she does not respond to other physical stimuli as a normal baby would.  However, her tests for Myotonic Dystrophy are negative.  Verdict's still out as other samples and biopsies are still at Mayo....The good news is that she is home, her breathing and feeding are stable, and she can be with her family now.
     

    • Gold Top Dog
    Keeping your friends and their baby in my prayers. That is so heartbreaking. I am glad at least they have her at home now, surrounded by the love of her family. Right where she should be.