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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

 

Good day, bad day
by Anne Moore
11/11/2003

Good day, bad day. Good day, bad day. Good day. Good day. Good day.

It seems as if we may be turning the corner. I don’t think we’re entirely around the bend yet, but it seems as if things are looking up.

Archie looked great this morning. Although his breathing was still strained, it appeared much easier than it has been for a while. He slept easy during the majority of my visit, even though he seemed to have a few intermittent bouts with nausea. When the poor little guy starts to gag he pulls his legs and arms into his chest and turns his head to cough. Archie actually spit up twice or three times this morning. I rubbed his back and wiped the spit off his lips. Dr. Ferlauto said that the nausea is a side effect of one of Archie’s heart medications, and that it would subside once he and Dr. Horne found the correct dosage for our little guy.

I was present when Dr. Ferlauto examined Archie and reviewed his blood work. The little guy’s calcium is within range, and although Archie’s uric acid is a little off Dr. Ferlauto is fine with the count, contributing the inequity to the chemotherapy preparation drug Archie was given all day Saturday. “Everything is looking good from my standpoint,” he said. Dr. Ferlauto was even more excited when Dr. Hayes came in to exam Archie and announced that the baby’s white blood cell count was at 50,000, the lowest it’s ever been since Archie’s birth.

Dr. Ferlauto and Dr. Hayes continued to argue about the placement of Archie’s liver. Dr. Ferlauto holds that the liver is still low, although Dr. Hayes believes that the liver is moving back up to its correct location. Dr. Ferlauto made another mark with his pen on Archie’s abdomen to aid him in tracking the changes in the liver’s position.

Archie fussed and fought the doctors throughout their exams. Dr. Ferlauto told me that Archie has a lot of “spunk,” and that he was happy of it. He also told me that two nurses had to hold Archie down when Dr. Ferlauto did the spinal tap last Friday. “I got it on the first stick, no problem,” he explained. “But he fought me.”

I have to admit that I was happy to hear that Archie was able to put up a fight when he felt his crappiest.

Dr. Ferlauto also ordered blood drawn for an F.I.S.H. on the 22nd chromosome. We hope to get to the bottom of the calcium deficiency by definitively diagnosing DiGeorge syndrome.

Archie is now back on breast milk. The food is given to him continuously by feeding tube. The nurses are fortifying the milk with additives to help Archie gain weight easier and faster. I think we’re starting down the road of packing on pounds in preparation for Archie’s surgery.

The baby also had two stools this morning. They were an odd color, but the nurse said that could be the billirubin passing through the baby’s system. I think she may be right as Archie is looking pinker and less orange today.

The very best part of this morning’s visit was when Archie was awake and social for about a half hour. He watched me as I talked to him and his hand found his mouth. Together we invented a game where I would exaggeratedly kiss his check and he would follow me with his eyes and then make this surprised look when I pulled away. Now I know what parents mean when they talk about the special sort of love they have for their children.

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