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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


If prayers were audible, I’m sure they’d hum heavy over the NICU
by Anne Moore

If prayers were audible, I’m sure they’d hum heavy over the NICU. The prayers of desperate parents must have a distinguishable tone. I image the voices ring clear, full of fear, heartbreak, love and hope. I wonder how it would feel to shoulder each parent’s private thoughts, knowing that each baby’s comfort will come at a price, with some too dear to pay? We pay in tears and blood for that which matters most.

On Friday morning, Dr. Ferlauto was talking about putting Archie in a bassinette again, letting us dress him in an outfit we brought from home. We had hopes of moving the baby to the intermediate section of the unit again, bringing him one step closer to coming home. Archie was breathing so easy that I didn’t even notice his chest rising and falling, rising and falling.

By Friday night, Archie was clammy and retracting hard with each breath. He slept fitfully as John and I asked the nurse practitioner to resume the baby’s Lasix. The doctor had withheld the baby’s daily dose of Lasix in an effort to counter his dropping sodium level. He had also ordered several cc’s of sodium chloride be given to the baby through his PICC line. The nurse practitioner ordered an x-ray of the little guy’s lungs and determined that since the image looked the same as the x-ray taken on November 10th she wanted Archie to try to ride out the night without the diuretic. “We expect these sorts of episodes from a heart baby,” she told us. I left the hospital that night in tears.

When John and I walked into Archie’s room Saturday morning, the nurse was holding the baby at an angle, watching Archie’s chest retract with such force that his skin was sucked between his ribs each time he inhaled. Each inhale was accompanied by a disturbing side to side rattle. John explained the fight we’d fought the evening before as Archie’s nurse listened intently. Before John could finish, the nurse flagged down the resident. He watched the baby breath for about a minute and left to find the neonatologist.

Dr. Newel examined Archie and ordered Lasix to be administered. He questioned Dr. Ferlauto’s call, but explained that treating babies is a lot like chasing your own tail. In fixing one problem, another is often created. I assured Archie that help was on the way. “Archie says ‘Thanks, Dr. Newell!’” I called after the neonatologist as he left the room.

The Lasix helped the baby a bit, but his breathing was still a long way from comfortable. I watched Archie’s monitor and tried my hardest to take each breath with him. Ninety breaths per minute. One hundred and fourteen breaths per minute. I couldn’t keep up. The baby arched his back and grimaced, gasping for air again and again. Time stood still as we waited for the Lasix to take effect. The baby’s next diaper registered 97 cc’s of urine. A new delivery, a 34-weeker, was brought into the unit and placed next door to Archie. A flurry of activity ensued. Another delivery, a 25-weeker, was brought in and put in a room far down the hall. A team of respiratory therapists flowed behind the incubator. The baby across the hall, a 26-weeker days shy of his two-week birthday, suffered a pulmonary embolism. Each case is direr than the next, each situation bests another. Saturday’s census counts 44 babies in the NICU.

The administrative assistant at the nurse’s station told us that John’s brother and sister-in-law were in the waiting room. John traded places with Lewis, and Lewis eventually traded places with Karen. She brought us crayon drawings Claire and Ellis made for the baby. Sensing Karen was a little fearful of the baby’s appearance, I offered, “This is what heart failure looks like.”

Dr. Stroud dropped by Archie’s room to examine the baby. He confirmed that Archie’s liver is still low, but that his white blood cell count, although a little higher than the previous two counts at 45,000, was still low enough to point toward the transient leukemia diagnosis. “So we’re going to have nice, friendly visits from now on?” John asked.

“I hope so,” Dr. Stroud replied, smiling.

As the day wore on, Archie continued to struggle to breath. He cried and fussed, two activities from which he usually abstained. We asked repeatedly that Archie be put back on the C-PAC to give him a rest, and our requests eventually wore the neonatologist down. The respiratory therapist put the mask on the baby and he relaxed immediately.

John and I went home to get the baby’s CD player and a disk full of lullabies. When we went back to the hospital Saturday night, Archie was resting quietly. The neonatologist on duty Saturday night, Dr. Owning, talked to us about the possibility that the baby may have to remain in the NICU until he’s sent to Charleston for his surgery. “This is how it is with cardiac babies,” he explained. “We won’t send him home until he’s stable. And if that means he’s going to Charleston straight from here, then that’s how it will be even if it’s an inconvenience for all of us.”

Archie was a new man Sunday morning. He was resting easy, enjoying the assistance of the C-PAC. He seemed to love his lullabies. The little guy opened his eyes wide and socialized with his father and me for an hour or so. He is a beautiful baby, observant of his surroundings and alert to the goings on surrounding him. Archie pulled out his feeding tube and grabbed at his C-PAC mask. He took a pacifier for the first time, sucking crazily for minutes on end. We cheered with joy as John fumbled for the camera.

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