Friday, September 3, 2010

The Good Things

Samuel's ACH appointment went very well! He weighed 8lbs 4oz! The normal weight gain for a preemie with chronic lung disease is 15-30 grams a day.....Samuel gained 33 grams a day!
His new doctor, Dr. Lightburn, told us that we could begin taking Samuel off the oxygen during the day (but leave the monitor on so that we can see how he is doing.) I'm thinking that it may take us a while to actually ween him off......we are going to give it a try tomorrow to see.
The ENT appointment was probably the most disappointing part of the visit. They did a scope down Samuel's throat to look at the vocal cord and also to figure out why he squeaks when he breathes. Apparently, Samuel has a 'floppy' voice box (causing the squeaking.) We also learned that his left vocal cord has not gained any more mobility since the last time they checked it. They have decided to recheck in a month or two to see if he has made any progress. We are still hoping that he outgrows both problems.
I've been worried about one of Samuel's arms. He hasn't been moving it around as much as the other and I know that can be a sign of something serious. The doctor took a look and didn't see signs of high or low muscle tone (which is really good.) The physical therapist came by and worked with him a little bit and as far as we can tell, the one arm is just weak. I guess I'm not only a mom, I'm also a speech therapist, an occupational therapist, and now a physical therapist.
For the most part, it was a good visit!
In daily life, we've been dealing with a rather sudden batch of eczema. FUN STUFF. I've bought some Aveno baby wash and lotion for babies with eczema....I'm going to have to skim my baby books for some other ideas of how to deal with it because it doesn't seem to be going away.
I've made the switch to half-formula/half-breast milk and it's been a tough transition so far. Samuel's plumbing gets a little stopped-up thanks to the formula. It's going to be interesting when I finally make the switch to all formula. People keep suggesting that I begin pumping again. I don't think I have time to pump and take care of Samuel. I hardly have time to brush my teeth as it is!
So....over the last few weeks I've been meaning to make myself a list of good things that have come out of this situation.... I figured sharing might be the easiest way to make myself do it.

The Good Things
(in no particular order)
1. We have Samuel!
2. We have met some amazing medical professionals - Carolyn especially - whom I love very much.
3. We have seen just how BIG the body of Christ is.
4. (I'm hoping) Samuel's life has touched the lives of many.
5. I get to stay at home with my baby (which I wouldn't have done if he had been full term.)
6. I have been humbled - accepting the help and love of so many.
7. I can fully appreciate what good friends we have.
8. I'm less selfish.
9. I take nothing for boy is the strongest kid you'll ever meet.
10. I realize I'm not in control. (That's a hard one to learn....)
11. Ah.....enjoying the little things in life.....showering, brushing my teeth, getting some sleep!

What good have you seen because of Samuel? I would love to hear (but no pressure!)......
by: email:, blog, or Facebook


  1. I have truly seen that through God great things can happen. You have shown me a strength that I hope to have one day.

  2. yes...God is Good all the time!

  3. P.S.~He looks so sweet and chunky in those pictures!

  4. I have seen people who live miles away pray for Samuel.
    I have seen the body of Christ pour out love like I have never seen before.
    I have seen a family show supernatural strength amidst overwhelming uncertainty.
    I'm sure that I speak for many by saying that pictures of Samuel have brought tears to my eyes, and a smile to my face. He has brought hope to parents who are going through similar struggles. Thank you for sharing Samuel's journey with us.


  5. Hi Sarah,

    I found your site today after searching for the term 'The midnight bark' after losing my mobile phone and asking friends to call it.

    I started reading your site and found it inspiring. I'm a doctor, and spent time working with neonates.

    You sounds really committed and strong, and I think you have a great outlook on things (as evidenced in this post).

    Anyway, I wanted to wish you and your son luck, and hope every day brings new happiness.