Saturday, June 5, 2010

Life is not Boring

Day 79 (somehow I got off on the days....)
Weight: 3 lbs 7 oz

As expected, Samuel lost weight because they put him back on Lasix twice a day. On the up side, he wasn't breathing as fast today because all of the fluid came off his lungs - meaning we got to come down on the flow to 1 liter! He also spent the majority of the day at room air oxygen (21%) which is fantastic!
On Tuesday Samuel will have a renal ultrasound to see if there is calcium in his kidneys. I want his kidneys to look perfect on the ultrasound.
Samuel will also have another eye exam on Tuesday or Wednesday. I keep mentioning these - and I know that they don't sound serious - but they are. We would like Samuel to avoid having eye surgery.
The last couple of days Samuel hasn't had AS MUCH fluid come out of his stomach.....but today it picked back up again. The doctor still thinks that the valve at the bottom of the stomach may not stay closed tightly when Samuel is stretching, wiggling, or (dare I say?) pooping. Its just worrisome when he has a lot come out.
Yesterday the doctor decided to go up on Samuels feeds again. The nurse practitioner mentioned today that we might do the 'study' on Samuel's stomach next week. If it goes well then we can start feeding in the stomach - then move on to bottles eventually!
Someone today told me that they pray for Samuel and that they would like to know how I pray for him. I try to be specific and cover everything:
His head (for no ill effect from the minor brain bleed....that he will be smart)
His eyes (develop normally)
His ears (his hearing to be perfect)
His lungs (complete healing)
His intestines (no further complications)
His heart (continue to work normally)
His kidneys (function to improve and for no calcium build-up)
For no cerebral palsy (that his motor skills will be excellent)
That he will not aspirate (get milk in his lungs) when they begin feeding him through his stomach
For rest (he is SOOO active)
For growth
Wisdom for the nurses and doctors
And for anything else that only God knows....

Thank you as always for your prayers. They make SUCH a difference. You are changing his life more than you know. Sometimes I get the feeling that people think I should just be happy that he is alive. I am SOOO thankful. But there are many verses in the Bible that tell us to ASK for what we want - and as a mother, I want the best possible future for Samuel....believing that God also wants the best for him.

On another note:
People have been asking what I do with my days in Little Rock. I think they are surprised when I tell them that I'm not just sitting around bored all day.
6:20am - wake up and call the hospital
6:30am - pump
8:30am - get to the hospital
8:45am - pump
9:00am - check on Samuel - get updates from the nurse about what the nurse practioner said that morning when he/she came around. Then wait around till the doctors round.
10:30am - doctors round (sometime around this time)
11:00am - pump
11:30am - eat lunch
12:30pm - check on Samuel and hold him for an hour or two
2:00pm - pump and make a few phone calls/ get some business stuff done
3:00pm - check on Samuel - change his diaper - get him to relax....
5:30pm - pump
6:00pm - check on Samuel until shift change (6:30)
6:30pm - eat dinner
7:00pm - pump and make phone calls
8:00pm - check on Samuel
9:00pm - leave and go back to the Stegers house
10:00pm- pump
11:00pm - bed
3:00am - call the hospital
6:20am - call the hospital
(and my day starts over again!)

Does it sound busy to you? Life is not boring. :)


  1. After reading this I know you are even more amazing than I thought before. You are as busy there as you are it work if not even busier. My prayers are continual and now I know when I am up in the night I can also pray for specific things. Thanks for the update.

  2. Dear Sarah,

    My thoughts and prayers are with you and your family! Slow and steady wins the race! God is watching over your son, but He does things in His time, now always as fast as we would like Him to act. There is a reason for it all. We may or we may not ever know what that may be! A wonderful saying I had heard and applied to difficult times in my life regarding prayer from Tony Robbins is - God's delays are not God's denials, so continue praying, and continue to be and stay strong for your son! Sincerely, Sue

  3. Oh Sarah, I have so missed your glad to be back home to my computer...and yes you sound great as always....Samuel is really growing into that wonderfully made baby boy...I so love him...thats so much for thinking of each of us...your moments are our moments too...praying and yes each of your are still the highlights of our conversations....hugs for each of you today as always...

  4. That you are amazing is an understatement...That you are still so strong and filled with faith is an inspiration to us all. God is using you in so many ways to touch us. When I have a rough day I think of you and realize how easy my day truly was and pray that much harder for you and Samuel and thank God for all His blessings! We love you!!

  5. When my daughter was in the NICU that's pretty much what my day looked like too.