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)
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
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. :)