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?”|
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||
I think we knew that something was wrong before it all went to hell
|by Anne Moore
I think we knew that something was wrong before it all went to hell. Although Archie was social with
us Thursday night, opening his eyes and making noises at us, he seemed as if he wasn't himself. He
continued to be very congested all day and we were afraid when he bradied (dropped his heart rate
below 100 beats per minute) during several consecutive feedings. I even noticed Archie twitch his
hand repeatedly at least twice. I mentioned it once, and said that it looked as if Archie were
having a seizure. No one seemed too concerned so I didn't really think anything more of it.
When John and I arrived at the hospital Friday morning, Archie was having another echocardiogram.
Dr. Horne wanted to check on the fluid around the baby's heart and determine if the heart medications
he had prescribed were working. The technician asked me to comfort Archie during the remainder of
the procedure, and as I was doing so I noticed that his skin was clammy. At first I wondered if the
clamminess was a result of the echocardiogram jelly, but it seemed to remain even after the exam had
ended and the jelly was cleaned away.
Dr. Stroud, one of Archie's hematologist/oncologists, had examined Archie in the morning before John
and I got to the hospital. Dr. Stroud left a message for us to call him when we arrived. John
called Dr. Stroud who explained to us Archie's most recent white blood cell count. We found out
later that morning that during his exam, Dr. Stroud noted that Archie had what he believed to be a
During his 9 a.m. feeding, Archie bradied again and there were a few tense moments when I yanked the
baby up and rubbed his back, trying to get his heart rate up again. Archie's nurse practitioner,
Dawn, came buy and examined him. Soon she brought back Archie's neonatologist, Dr. Ferlauto.
Dr. Ferlauto was concerned with Archie's appearance and performance during his feedings. He was also
concerned because the poor baby was sucking air so hard that his chest was caving in and out even
worse than it had been when Dr. Horne diagnosed heart failure. The doctor asked John and I what we
thought, and we said that we thought something was wrong. I mentioned that Archie was clammy and
that he almost looked green. Archie's nurse then whispered to Dr. Ferlauto that Dr. Stroud had
suspected Archie had a seizure during his exam. I heard her and said, choking back tears, that I had
seen the baby twitch his arm in this weird way on two different occasions. That's when things went
crazy. Dr. Ferlauto said that he was moving Archie back to the intensive side of the unit. He
ordered an I.V. put in, and said that he was going to do a spinal tap and order x-rays. Dr. Ferlauto
said a lot of things, but that's when I stopped hearing him. Do you know how it sounds when you're
outside standing under an awning and it begins to rain? It starts innocently enough, with the rain
occasionally pinging against the awning. And then the rain picks up and the pings are more frequent,
until all you can hear is the roaring noise of rain on the roof. That's how my mind felt as all this
was happening. I stopped hearing. I started crying. I didn't know what to do.
John and I left the room when the nurse came into the room to put in Archie's I.V. I'm glad we did,
too, because that's when the baby crashed. He seized again and this time Dr. Ferlauto was there to
see it. John and I were sent to the NICU waiting room. We called my mother. We took our camera to
the car. We came back and sat, wondering what to do next.
John went into the NICU first. Ann, our social worker, came out moments later to get me. I started
to cry when I saw her. She suggested I call a chaplain. She suggested we plan to stay the night.
The rain was roaring in my ears. Nothing made sense. Ann took me back to the NICU, to Archie's new
room. John was standing in the middle of the room, crying. Archie didn't look anything like
himself. He was wearing only a diaper. He had new tubes in his hands and feet and oxygen in his
nose. He was green. Sue brought Archie's sign into his new room and hung it on his window. Someone
had put his clothes into his new drawers.
The doctors stated looking at Archie's blood. Dr. Stroud was back to talk white blood cell counts
and leukemia. Archie's white blood cell count was up in the 80,000. He mentioned that Archie may
have to have a blood transfusion, but that would be particularly risky for Archie because of his age
and heart defect and that he may not survive the procedure. Additional blood tests were ordered.
When Dr. Stroud left, Dr. Ferlauto reassured us that he felt a blood transfusion would be
unnecessary, that he still thought Archie had pneumonia.
Suddenly my parents were there. John was signing a paper to give Dr. Ferlauto permission to do a
spinal tap. We were in the NICU waiting room again. A priest walked past us. I knew he was coming
to see us. He went into the NICU and then came out again. "Are you the Moore family?" he asked.
"Is Baby John baptized?" Father was happy to hear that we had Archie baptized the day he was born.
He talked to us about love and letting go. He talked about God's will and reminded us that God loves
Archie more than we do. He talked about Archie's soul and how John and I had done our part bringing
the baby into the world, but that Archie's future wasn't ours to control. We prayed together. "Was
John not your favorite, Lord?" he asked. Everyone in the NICU waiting room bowed their head. John
and I clung to each other, crying.
And then we were back inside Archie's room and things seemed to be getting better. Medicine stopped
the seizures. Dr. Ferlauto only had to stick the baby once during the spinal tap and reported that
the fluid appeared clear. X-ray seemed to indicate pneumonia. Two antibiotics were administered to
help alleviate the infection. An hour or so later we were told that first tests revealed that the
spinal fluid was clear of infection. Archie was stable again. John's father arrived. He and John
and I stayed with the baby until late that evening. My dad volunteered to stay the night.
Thankfully Archie had a peaceful night. Dr. Stroud called to check on Archie's white blood cell
counts at midnight, quarter to six the next morning. He spoke with us first thing Saturday morning.
He had spoken to experts in the field of Down syndrome and leukemia and had came up with alternative
treatments. Archie's white blood cell count had encouragingly come down, but steps were taken to
provide treatment if the count went back up again. Dr. Stroud ordered a drug for Archie to prepare
his kidneys for chemotherapy. A sign reading "PREGNANCY PRECAUTION" was hung on Archie's door.
John signed a permission slip to allow the nurse to insert a PICC line (a long I.V. that threads
through a vein up to the baby's heart) into the baby. Archie was given until Sunday morning to drop
his white blood cell count or he would have to endure a dose of chemotherapy. If Archie needed more
than one dose of chemotherapy, he'd have to be moved out of the NICU to the hospital's pediatric
Since the baby's calcium levels were inexplicably low, Archie was given two different courses of a
calcium drip. The drip takes two hours to administer and the baby's heart monitor has to be one for
that time period... beep, beep, beep... It was maddening to listen to.
Archie improved Saturday. His coloring was better. He rested easier. He gained two ounces. Dr.
Ferlauto put a machine on Archie to help him get air down his throat. The machine isn't a
respirator, but only helps Archie breath easier. The baby is breathing room-quality air for himself
and isn't receiving oxygen anymore. Archie was stuck for blood tests all day long. Dad stayed the
night with him again.
On Sunday morning Archie's white blood cell count was in the low 50,000, an acceptable count for a
baby with Down syndrome. His blasts were at 26 percent, one of his lowest counts ever. The drug
meant to prepare Archie for chemotherapy was discontinued. I don't know who was happier: John and
I or Archie's nurse, Janice. The cardiologist visited with Archie. He and Dr. Ferlauto talked to
us about another syndrome they think the baby has. This syndrome, called DiGeorge's syndrome,
affects the 22 chromosome and depletes the body's calcium reserve and lowers resistance to disease.
Archie will have a genetics test to determine whether or not he has this syndrome.
Archie continued to improve Sunday. He slept all day. He even seemed to root around dinner time,
even though he's on an I.V. The baby's liver and spleen felt normal. Everyone was encouraged by
Archie's progress. Sunday seemed to break Archie's trend of "Good day, bad day. Good day, bad
day." Here's to hoping that Monday is a good day, too.