September 30, 2010

a little bit of good, a little bit of bad

Good:  muscle tone is improving and much closer to normal.  We still need to keep an eye on it, and James will still have to do physical therapy, but his daily examinations and his physical therapist think he's doing better.  Please continue to pray for normal muscle tone.

Bad:  Today he had a cookie swallow, which means they x-ray-filmed him taking bottles with different thicknesses of milk.  He did best with the milk that is as think as honey, but he still aspirated on it.  They are going to continue with the feeding tube (now in his nose) through the weekend and will do another cookie swallow on Monday or Tuesday.  This gives us 3 good days to pray for this specific intention:
- James needs to take 30 ml of the honey-thick milk with no aspirations at the next cookie swallow, with continued success, so his feeding therapist will okay him having a bottle.  This will put us on the path that leads to him at home without a feeding tube.  It also leads to normal eating for the rest of his life. 
This will be another mini miracle as the feeding therapist said it was one of the more severe cookie swallows she has seen.

Clarification:  I don't know if I misunderstood this on purpose or accident - if that even makes sense! - but when James' doctor told me about the pathology report on the placenta she said there was "one true knot" and then said something about the midwife putting it there.  So I believed that my midwife had tied off the cord.  But I asked my midwife and learned that she did not tie off the cord, meaning the knot happened naturally, in the womb, and is probably the reason James had the trouble he did.

Scary thing I learned today:  Jenny, our nurse friend who attended the birth, told me today that as soon as James was born she was worried.  She said, "the only other time I've seen a baby that color was when I was carrying one to the morgue."  Oh Lord God!


  1. My daughter was born on the 8th with a true knot in her cord, as well. What a coincidence! I've heard they're very rare.

    Thanks for the updates! We will continue to keep you all in our prayers!

  2. Bonnie- my grandpa was one of the best pray-ers I know and I have full confidence that he is basking in the comforts of heaven. I'll ask him to take up James' cause as one of his first heavenly assignments :) (I'll esp ask him to intercede for the cookie test- my grandpa loved to eat)

  3. Just found you through Conversion Diary...

    my oldest had a true knot in his cord and was blue at birth (probably had meconium aspiration as well) - he is now an 18 year old fabulous young man!

    we are up in Chicago and will keep you in our prayers!

  4. Hi Bonnie. I don't know you, but another blog I follow linked yours, asking for prayers. I am praying so hard for James, for you and for your family! As difficult as it is to give yourself any respite time during this stressful time, please do keep an eye on how you are coping. (I say this as a nurse and a mom): Between postpartum hormones, a NICU baby, and young children who aren't clear on what's going on, you are being taxed beyond what many of us could handle, even with enormous graces. I noticed your "eating a lot" comment and sometimes that's our brain's way of getting a quick serotonin fix. (It could also just be that you just need those extra calories as your body is put through a mental and physical marathon.) Regardless, the battle for the mind is a fierce one; speak truth to yourself and accept truth from others. For ex: the Truth that you are an amazing mother and the choices you made from labor through the present are THE BEST anyone could've made given the information you've had. James is blessed to have you as his mother! Also, if you are experiencing high stress/anxiety/depression, which of course you must be - but I mean in a crippling manner, please do talk to your doctor; being the healthiest mom you can be is a wonderful way to serve your children even in this dark time.

  5. Bonnie, keeping you in our prayers! I guess it must be somewhat nice to know that there was a reason (sad they thought the midwife did it, they don't do that kind of stuff!).
    I do have a friend whose eldest (now 11 I want to say) has brain damage from birth, they are a really inspirational family. I asked her if she would be willing to talk with you if you ever need it, and she is happy to - if/when you would like to.
    Prayers for full healing though! :)

  6. May God continue to bless you and beautiful James Fulton. I am praying.