December 1, 2010

learning curve

At midnight JF awoke and when I picked him up I noticed he was soaked.  What seemed to be almost the entire 3 oz from his last feeding had soaked through his onesie and sleeper and blanket.  When I undressed him the acidic formula was pooled on his belly and as I wiped it up more came out, along with some fresh blood. 

It was kinda gross - especially the smell, which is the smell of barf.

We cleaned him, cared for the g tube site, dessed him, and I gave him another 2 oz, which he then threw up all over.

So I cleaned myself and changed clothes while Travis did the same for JF.  And then I gave him a paci and put him to bed. 

At 3am he was wet again.

At 6am he was wet again and crying hysterically.  We didn't give him any more formula but Travis took him downstairs to watch the morning news and that calmed him down.  Meanwhile I was on the phone with our family practitioner, who was probably regretting telling me that I could call him on his cell phone any time.

At 8:10am I finally got ahold of the surgeons office and was told to come on in.  The magic words were "no wet diaper since 8:20 last night."

The problem?  There tube had snaked down into JF' belly and there was an extra 4 cm of it inside him.  So the "balloon" at the end of the tube which holds it against the wall of the stomach was bobbing around on the sea of stomach acid.  As soon as the CNP took the extra tube out JF was happier. 

And then, in a wonderful move, she took the tube out and replaced it with a button.  The button snaps shut and lays pretty flat against JF's belly.  We can hook a tube up to it if we need to, but since we give him all his food via bottle and have been told how to give him his siezure medicine orally, we hopefully won't have to use it, and can get rid of it in 3 months or so.

For those of you who are in it for the long haul, would you please do me a favor and make a few prayer requests for me? 
-Please pray that JF will lose the button and be able to eat and drink normally for the rest of his life.  (I've recently learned that some kids with neuro problems will stop eating suddenly years down the road.)
-Please pray that JF never develops acid reflux.  We are very afraid of that possible development.
-Please pray that his muscle tone will be normal.
-Please pray that his mind will work well, that he will be able to talk, think, read, write, and create at age appropriate levels.
-Lastly, please pray for me and Travis.  We feel so overwhelmed by the amount of knowledge that we're supposed to retain, skills we're supposed to develop, and paperwork we're supposed to read through.

Thank you and God bless.


  1. Bonnie, Sounds like you both handled this incident very competently but I know what you mean by the steep learning curve. I've posted twice on my blog asking for prayers for James (& tweeted too!). For some reason, God has put you all on my heart...maybe bc you're my neighbors to the north ;-)
    I'm wondering if there's an organization in your area similar to this:
    They provide amazing (subsidized) programs for kids with all kinds of neuro diagnoses. Just a thought!

  2. Having had a baby with health issues, I so know your fear and gratitude. A friend sent me this link once. It's very soothing.

    I'm praying for James, you and Travis everyday, having learning about you through a mutual friend, Molly B.

  3. I'm still praying!

    Sarah Hedman

  4. Praying, praying, praying! I'm sorry to hear about the rough night, but it's great that James has a button now and (hopefully) soon not even that, God-willing. On a personal note, I want to thank you for your honest look at life with James from birth through the present. I'm going in for a routine 20 wk ultrasound in about a week, and as we all know, we hope and pray for a perfectly healthy baby, but sometimes God has other plans. I'm slightly nervous, as any mother is, about the "what ifs" that may be waiting for us next week - though hopefully all is well. In anycase, I say that because I so deeply appreciate your perspective and honesty as you have lived life with James and watched God work in his body and your heart and mind. Thank you, your story gives me renewed hope that truly the Lord reigns in our lives. Thank you! Happy Advent!

  5. We're in it for the long haul and praying for you all with every step.

  6. Bonnie, I can't think of a more wonderful family into which James could have been born. I know things are really tough and scary right now, and there's nothing I can say to make it any less daunting. But I want you to know that you are loved. I have loved all our random moments together as friends, and I love the things you've taught me. I loved going to Europe with you. I loved re-meeting Travis through your eyes and getting to know him as the best husband in the world! I've only met Lydia the one time, but I love watching her grow up through your pictures and stories. I always wish we lived closer to each other so I could experience the changes with you. And although I've never met Bennet or James, I love both of those little munchkins from afar simply because they are your and Travis' sons, a combination of your two souls.

    I'm not a big prayer, but I always read your prayer requests and keep them in mind on a daily basis. For what it's worth, please tell James that I love him and hope for him to have a beautiful life.

    I mean... all hoping aside, isn't the beautiful life thing guaranteed, being raised by you and Travis?

    Yes. Yes, I believe it is.

  7. I'm praying for your intentions this Advent!