Tuesday, January 18, 2011

Tuesday, January 18th

Deuteronomy 32:36
"For the LORD will vindicate His people, and will have compassion on His servants, when He sees that their strength is gone, and there is none remaining, bond or free."

Today was a bit exhausting for me, and not to forget exhausting for Endurance.

Endurance's feeds were turned off again today.  He was getting 1ml an hour, which is about 1/5th tsp.  It goes back and forth, on and off so often that I don't wonder why he doesn't gain much weight.  He's now at 4.7 kilos, which is a little under 10 1/2 lbs.  About 2 1/2 pounds weight gain since birth.  The doctor's explanation for today's food shutdown was for Endurance's agitation and high heart rates not coming down.  He was still upset afterward too.  The doctors really don't have a good explanation for his frequent agitation.

Endurance had 7 in-house visitors today, including an occupational therapist.  She told me Endurance will start having little therapy sessions, training him to get his neck strengthened, so when he sleeps he doesn't shift his head backwards, almost touching his back.  Definitely not a chiropractor's recommended position!

Endurance also had two different chaplains visit at two different times.  One of them also has another job description and that's what Mike and I know him as.  The other one, a woman, came to meet me.  I must admit that I felt completely uncomfortable.   I didn't send for her and I really didn't want to talk to her at that moment.  If I want to talk about the possibility of our son dying, I'd rather talk to Mike, one of our elders, or a godly friend.  Sorry, I just feel like they are "pushing" Endurance through their line sometimes.  She did get Hannah and Noah doughnuts though.  Buttering them up???

Endurance smiles now when he's happy!  Absolutely adorable!!!!  He tries to say baby "hello's" as well.  He seems to be pretty out-going.

Thank you again for all of your prayers and encouraging words!!!!  I'm hoping to have a better day tomorrow.

Oh, something cute: yesterday Endurance was going to have the dear McKinley family from church visit, so I asked for a comb to get rid of Endurance's "mad scientist" hair.  His nurse Kelly said, "well let's just give him a shampoo and make him smell good instead."  Great!  After he was finished and hair all dolled up, Kelly gave him a kiss on his forehead and said, "I shouldn't have done that without asking, but he's soooo cute!  I love him!"  Endurance will put Kelly on his nurse request form!

Tuesday, January 11, 2011

Four Months Old!

Yesterday Endurance turned four months old!  God be praised for this!  He was making a few baby noises and little itsy-bitsy smiles with the help of caressing his chin!!!  I love holding him while I stand, so I can rock back and forth quite easily.

He's been having somewhat good days, which means his heart rate is between 130-170, no fever, and breathing rates between 35-70 (these are just my observances).

This morning though, at around 6:30 am his heart rate was in the high 220s.  This happens.  If it happens for quite a few minutes (about 15 minutes or so, depending on his nurse), his nurse will give him a "bolus," which means a large volume of fluid or dose of a drug given intravenously and rapidly at one time.  With him, his boluses can either be dilaudid (which now takes place of his morphine he used to get), or ativan (anxiety).  He gets dilaudid and ativan (also called Lorazepam) regularly through his drip lines.  Anyway, this morning he got three boluses early this morning.  When I came in at 9:00, his heart rate was still in the 210-230s.  His respiratory rate was anywhere from the 80s - 110s.  Ouch!  He got a fever then around 10:00, which then his nurse gave him Tylenol.

Coming from a family where we do not go to doctors except for emergencies, don't use prescription drugs, and definitely no immunizations, this is heart breaking to just say "here he is, give him what you think is best!"  Can't we just give him a bath in Arnica and everything will be okay????

As I left his room to write this, his heart rate was in the 180s.  His doctors said to shut off his feeds again, for a few hours, since he's working so hard with his heart rate being high.  They also ordered a bunch of blood work.  This poor little guy!  His picc line doesn't draw blood anymore, so the lab needs to come in and draw manually.  He hates this.  I do too, at least the having to hold him down part.  I need to figure out how to get more pictures downloaded  for this blog to show all of the poke marks on his arms and legs.

Yesterday they started giving him only breastmilk!  It's a first since his first week of life!  They had been concerned that Endurance might have a milk protein allergy, that would be in my breastmilk.  But a doctor that just got back from maternity leave and is extremely pro-breastfeeding, asked if any of my other children have had allergies.  When I said no, she said let's give him only breastmilk!  Again, may God be praised!  We were cautioned though, that if there is any signs of blood in his stools, they will shut his feeds off completely for 10 days and treat him for NEC again.  So far so good!

Endurance's roommate is a cute little 5-week old named Eden Grace.  She small enough to fit in a pocket!  Her mother took Endurance's birthday picture for us yesterday.  When she emails it to me, I'll post it!

God has been good to our family.  We thank Him for the many, many blessings He's given us and is showing us!

My dad sent us some keychains with this verse on them.  May we truly live up to these words with God's help:

"Consider it all joy, my brethren, when you encounter various trials,
 knowing that the testing of your faith produces endurance.
And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing."

James 1:2-4 (NASB) 

Thank you again, for your prayers!

Monday, January 3, 2011