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2003 Journal Links

Oct 26th - Archie is born
Oct 31st - Today, Archie is five days old
Nov 1st - We called the NICU at 3 a.m.
Nov 3rd - Archie's billirubin is down
Nov 4th - Today was Archie's due date
Nov 6th - Yesterday was the most trying day of our lives
Nov 9th - I think we knew that something
Nov 11th - Good day, bad day
Nov 13th - Archie looked great this morning
Nov 16th - If prayers were audible...
Nov 18th - I got to hold my son today
Nov 19th - John is back working again
Nov 20th - Archie slept all day
Nov 22th - I think I know what it’s like to be deaf
Nov 24th - Archie decided to stop fighting the ventilator
Nov 27th - Thanksgiving At the NICU
Nov 28th - John held Archie tonight
Nov 30th - If Archie doesn’t like something, he let’s you know
Dec 3rd - Archie will go for his first plane ride
Dec 5th - Tomorrow Archie will travel to Charleston, to the city where his father was born
Dec 8th - We got up extra early
Dec 10th - Although I spent the entire day at the hospital...
Dec 14th - The doctors attempted to extubate Archie twice
Dec 15th - We’re going to buff ‘em and shine ‘em up
Dec 17th - Santa Claus introduced himself to Archie today
Dec 18th - Archie is doing well
Dec 19th - Archie is continues to do well
Dec 23rd - It is Tuesday morning
Dec 26th - “Are you sure you’re Archie Moore?”

2004 Journal Entries

Jan 4th - John is holding Archie and feeding him his bottle
Jan 11th - We dressed him in a light blue sleeper
Jan 14th - Oh, how I've missed Days of Our Lives
Jan 18th - Patient & Family Satisfaction Improvement Survey
Jan 20th - Archie discovered his hands last weekend
Jan 15th - Babies like this
Jan 29th - Archie Moore is a flirt
Feb 11th - I'm watching Archie study his fist
Feb 23rd - Guess who gained eleven ounces his first week off Portagen?
Mar 2nd - My throat began feeling raw yesterday afternoon
Mar 10th - Tummy Time
Mar 15th - I hate those machines!
Mar 31st - Archie was not interested in his early intervention therapies today
Apr 13th - Well-baby check-up
Apr 21st - Today Archie's world got a little bit bigger
May 7th - It's difficult to write
May 30th - I took Archie to the CDS yesterday
Jun 20th - I know I don't update my journal as frequently as I once did
Jun 29th - We Achie to Budka's
Aug 26th - Archie fights sleep with a fierce tenacity
Sep 12th - Yeah, I know. I need to post more
Oct 26th - Today you are one

 

Archie's billirubin is down to 15 unconjugated and 2.7 conjugated
by Anne Moore
11/03/2003

Archie's billirubin is down to 15 unconjugated and 2.7 conjugated. John and I are thankful for that. We're hoping that the lower billirubin readings will result in an energy gain for our baby.

Worked with Sue, Archie's occupational therapist, again today as he is still having difficulty eating. Sue said that Archie is spending all of his energy fighting against eating, and because of that he doesn't have any energy to left to eat. Because he ate well his first few days, Sue thinks that it's possible Archie has made a negative connection with eating. She was able to get him to drink 10 cc's, though. If we're able to coax Archie to eat just a little more, Sue said she'd take Archie down to radiology to watch him eat by way of x-ray and try to pinpoint exactly where his issue lies. John and I never knew how many muscles and work went into eating until struggling with Archie through his feedings over the past week.

John and I were instructed not to talk or interact with Archie when he opened his eyes. Apparently our baby would rather spend his energy interacting with us than eating. Although Sue says this may indicate that Archie has great reasoning skills, it isn't helping our little boy get home any more quickly.

I knew that Archie would have developmental delays, but I had thought those delays would occur when Archie was learning to read, or learning to hit a baseball. I had always believed that eating was an instinct. I never knew that my son would struggle with such a basic survival skill. Fighting to feed Archie a bottle is both a frustrating and humbling experience.

The psychologist from pediatric oncology was sent to speak with us today. She said that she just wanted us to know that she was a resource available to us if we felt we needed it, although Dr. Hayes gave her a thumbs up and told her that Archie was doing well before she came downstairs to talk with us. I knew I lost it when Dr. Newell first mentioned leukemia, but apparently I freaked out a little more than I realized. All of the nurses and doctors now handle me with kid gloves.

Dr. Hayes visited with Archie yesterday morning on his way to church services. He examined Archie and told us that his spleen and liver no longer felt enlarged. John and I were so happy to hear that. Dr. Hayes told us that the baby's white blood cell count was roughly 60,000, but that we shouldn't worry about that count until it hit the 100,000 mark. Before he left, Dr. Hayes said that he'd "offer up a prayer for Archie." I was holding the baby and staring at his face, trying not to cry.

We have figured out that Archie is most relaxed when I'm holding him. We can tell by watching his monitors that Archie's blood pressure and respiration levels are best when he's lying in my arms. John also noticed that when my voice quivers or rises when we're talking with the doctors that Archie's blood pressure and respiration level fluctuate for the worse. I think he knows I'm his mother.

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