2003 Journal Links

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 seizure.

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 oncology unit.

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.