Friday, August 21, 2009

God Bless This Broken Road

Jimmie has been puking a lot today. )-: However since Rachael realized he needed a different tube and they put the bigger shorter one back in he hasn't puked his tube up. He has done pretty good taking his bottle. He's taken 70 mls a few times and isn't screaming and struggling. Of course that seems to change very quickly. He still has one more feeding this evening I think.

I'm eating my words about Dr. P. He came back in today and spent over 30 minutes talking to Rachael and Justin. He is proving to be very open minded. He even made the statement that mixing western and eastern medicine could be very helpful. He is willing to try oxygen for Jimmie. He is also open to enzyme therapy and probiotics, both of which Rachael brought up. He wants to very systematically try things. He wants to know what works and what doesn't. So - we'll see . . . there may be some experimenting happening which we are totally excited about in that context.

Dr. P. told Rachael and Justin this morning that *on paper* Jimmie looked great! He is gaining weight and very healthy. He said that he could never recommend a g-tube (surgically implanted feeding tube) for Jimmie at this point in time. He said that would be gross negligence and fodder for malpractice on his part if he did that. He said the risks of that far outweigh the benefits to Jimmie. Jimmie would have to prove over and over that he wasn't able to thrive any other way. He said that Jimmie is growing and gaining and that means eventually his LES ( lower esophageal sphincter) will mature and his terrible reflux will subside.

Amy we totally appreciate your input! I read your comment to Rachael over the phone this evening. It's nice to hear from somebody who's "been there done that" and is so straight forward.

I thought the whole discussion with Dr. P. was very encouraging, but Rachael sounded very tired and down anyway. She and Justin need a refresher. They need perspective and grace to deal with this. I think this grace has to come from Above! Lord please comfort them and give them strength. I know that Rachael and Justin are very discouraged and weary from this struggle. Rachael- of course- wants the whole thing to just go away, for there to be some magic potion to make everything all better. Unfortunately I think that the most likely outcome to this is that they keep limping along until Jimmie outgrows his issues. It's a broken road, but that doesn't mean it can't be blessed right? (-:

We are so thankful for your prayers!



  1. I am glad the doctor is open minded. He is spending time trying to figure this out so that is a very good sign. Jimmie is an amazing lil guy and he WILL beat this problem soon. He will leave it all in the dust and once again surprise everyone. Mom and Dad comfort each other and know that you can do no more than you already have. You have made the right decision taking him to the hospital, now let them do their magic. I think of you everyday.

    Kathy Barnes

  2. I'm glad today was at least a little better. Remember, even if tomorrow brings more arching or struggling to eat, or other problems, that overall improvement is the goal. You can't concentrate on the minutiae too much or you get down very very quickly. One of our favorite NICU nurses called this the NICU dance: one step forward, two steps back, two steps forward, one step back, etc. You learn to get "good" at it, to take the good with the bad and press on. One of the most important things Rachel can do is to pray before each feeding, not just that it will go smoothly, but for peace for herself too. Jimmie can pick up on her tension and make things more challenging for both of them. He is gaining weight. He is eating, even if not "enough". Concentrate on these amazing things. God is good. This too shall pass, and one day she will be sitting in her living room holding him as he is holding his own bottle and be amazed that it has gotten so "easy" to feed him!
    One other thing to possibly advocate for is to get that tube out ASAP! One of our NNP's told us that the tube exacerbates reflux because it manually keeps that sphincter open all the time weakening it. So, bug them! bug them! bug them! get that tube out of there! you might also consider asking for a ENT consult (if you don't already have a relationship with one) so you have someone to followup with on adjusting dosages. Our pediatrician is WAY more conservative about increasing dosages than the ENT, because without visualizing the esophagus with the scope it's hard to justify I guess. We'd still be back on a ridiculously small dosage, and horribly symptomatic, without her.
    More prayers your way. Hope tonight and tomorrow go fabulously!

  3. I am thrilled to hear that the doctors are being open minded. THAT changes everything.

    My oldest had severe reflux until the chunky monkey had yogurt added to her diet at 6 months. She gained, thrived, was happy except when she ate and then puked...the best was when she nailed her dad down the back of his sweater at a month.

    One time her colic was so bad that I went to see a friend's mom, who promptly told me to go lay down and sleep (I guess the bags under my eyes were at my chin by then) and she rubbed her little tummy and sang to her. She calmed down and was able to eat then. So I started rubbing her tummy anytime I fed her, and that helped a lot. So I would have to say that combining all techniques makes a difference.

    Amber, I have had Jimmie and Rachael and Justin added to many prayer lists. All of you. I know that many are following this blog. We are all rooting for Jimmie and for God's will.

    Your faith astounds me. I have been blessed.


  4. I am adding a nickname for Jimmie. After hearing today that he was over 9 pounds, I think he should be called "Big Jim"!