2003 Journal Links

I try to keep my mind blank during the week when John is working and I have to go to the hospital alone. As I walk from the parking garage and through the long hospital corridors I try not to think about how tired I am, or how helpless I feel, or how fearful I am that my baby will have another bad day and that his father and I will have to wait even longer to take him home. Most mornings I feel nauseas as I exit the elevator, pass through the waiting room, and pick up the phone outside the NICU to ask permission to visit with my son. Although John calls the hospital throughout the night to check on our baby, I never really know what to expect each morning, what each day will hold.

Today I called my husband almost as soon as I saw Archie. “He looks dusky,” I croaked into the phone, my voice still lost to stress and fatigue. “And he can’t breath right. He’s struggling… umm…”

“I’m coming down there,” John said, sensing the fear in my voice.

“You don’t have to,” I replied, although I hoped desperately that he really did feel that he had to.

“No, I’ll leave right now,” he insisted. “I’ll be there soon.” I hung up the phone without saying anything more, wiping the tears from my eyes.

No matter my fear or anxiety, I can always pull myself together when I stand beside the baby’s bedside. I like to think that he can sense my confidence in him and that he finds my strength reassuring. As I stood stroking the hair sticking out of Archie’s C-PAP hat, Dr. Ferlauto stepped inside the room. I knew that he wasn’t making his rounds, but that he was greeting me out of courtesy to let me know that he was aware of my son’s poor condition.

The doctor gestured to Archie’s monitors. “We’re plugging holes in a damn.”

“I know,” I said nodding.

“Ben Horne needs to get in here and work,” Dr. Ferlauto commented, referring to his suspicion that Archie’s labored breathing, dusky coloring and clammy skin were a result of heart failure. “I ordered a chest x-ray. We’ll see how it looks.”

I nodded again in response. I nod a lot when the doctors talk to me. Dr. Ferlauto nodded, too, and left the room.

I looked back at the baby. His arms were waving wildly in the air. He whimpered intermittently. I tried to comfort him but he was beyond soothing. “Shhhh… little man,” I whispered. “Please, shhh…”

Archie’s fussing escalated into a full-fledged cry. I began pleading with him. “You have to get better, Archie. Your daddy and I love you so much. We want to take you home so bad. You’re everything we ever wanted.”

I turned around and John was there. “Ferlauto says… we’re… plugging… holes in… a damn,” I choked out, fighting back the urge to sob.

“Well, if that’s what we have to do, then that’s what we’re going to do,” John replied, smiling. “It’s going to be alright.”

“But he’s too young for surgery,” I said. “He’s still too small.”

“That little man is strong. He’s a fighter,” he reassured me. “He has his momma’s will.”

Archie started to cry again. The monitors began ringing as the baby’s blood oxygen level dropped dangerously low. John swept in to comfort his son. “Come on, Archie. You’re scaring your momma. Breath, little booger.” The monitors stopped ringing. “That a boy…”

Word travels fast in the NICU. Only a moment or two passed after Dr. Ferlauto left Archie’s room, but before I really had a chance to think about it our social worker, Ann, was visiting with me trying to allay my fears of traveling to Charleston for Archie’s surgery, of handing my baby over to the surgeons so that they could heal his heart. When Ann left the room, the March of Dimes NICU Family Support Specialist Rachel Balck brought me a document to read entitled “Preparing For Your Baby’s Surgery.” We talked about the medical challenges that lay ahead of Archie, about other mothers I could speak with who faced similar challenges with their own children, about Archie’s Web site. The NICU is good at caring for babies, but it is also good at caring for parents, too.

Dr. Ferlauto and Dawn, Archie’s nurse practitioner, came to assess the baby during their rounds. They paged Dr. Horne to request a consult. Dr. Ferlauto shared with us that he felt Archie was going into heart failure again based on the baby’s chest x-ray and that surgery may not be as far off as we initially anticipated. “I am certainly willing to sustain him here until he has to go for surgery,” he reassured us.

Bad days progress timelessly. It’s as if the characters engaged in your baby’s drama exist inside a vacuum immune to the ticking of clocks. Doctors and nurses enter the room. They exit the room. You sit in a chair. You stand by your baby’s bedside. You sit in a chair again. You wait, and hope, and wish for answers. The absence of minutes and hours continues until someone can tell you something concrete.

I saw Dr. Horne walk into the NICU. “There’s Dr. Horne,” John observed. “Now he and Dr. Ferlauto are looking at the x-ray.”

Soon Dr. Horne walked into Archie’s room. We stood. John shook the doctor’s hand. I felt sick to my stomach again. “I’m sorry you’all are going through all this,” Dr. Horne offered.

After listening to the baby’s chest, Dr. Horne explained to us that he didn’t think that Archie’s problems were related to his heart. He said that Archie’s heart and lungs sounded differently than they would if he were suffering heart failure. He explained that the baby’s x-ray looked differently than it would if he were in heart failure. “The difference is subtle,” he said. “But the difference is there. I don’t want you to think that I’m trying to pass this off on someone else as if this is not my problem, but after listening to his lungs I have even more to go on to make a stronger argument for infection rather than heart failure. I’ll make some changes to his heart medications, but let me talk to Dr. Ferlauto again.”

“You were right before,” John replied. “We trust you.”

“Well, I have made mistakes, but I do think I’m right here,” Dr. Horne responded reassuringly.

After consulting with Dr. Horne, Dr. Ferlauto stopped outside Archie’s door. “Just a quick stop to let you know that we’re changing boats midstream,” Dr. Ferlauto explained. “We’re going to test for infection again. Urine culture, CBC, blood gas… and to be thorough we should probably do another spinal tap so be sure to sign a permission slip before you leave. We’ll start him on the antibiotics again and see what happens.”

“We’re not going anywhere,” John said smiling.

With that there was a flurry of activity in the room. Syringes of drugs were drawn and administered to the baby. Preparations were made to take the urine culture, do the spinal tap. John signed the necessary permission slips. A technician arrived to perform an echocardiogram to check the heart’s size and function. John and I were asked to leave the room so that the nurses could begin the battery of tests. “Be good, Archie,” I said as we left the room. “I love you.”

The CBC revealed that Archie’s blood is as stable as it’s ever been. Dr. Ferlauto was pleased with the results but shared his frustrations with John. “I don’t want to wish a positive on any test, but I do wish there were something so that I knew what I had to treat,” he confided.

We waited for the doctor to perform the spinal tap. The shifts changed and we were told that Dr. Ohning would perform the procedure. The nighttime nurse was able to comfort Archie and put him to sleep. A deacon from St. Mary’s stopped by to pray with us. It was 8 o’clock, 9 o’clock… John and I left after the nurse promised to call us as soon as Archie’s spinal tap was performed.

We were getting into bed when the phone rang. “Good,” I heard John say. “Oh, good!” He hung up the phone.

“The spinal fluid was clear,” he said. “Looks like pneumonia again.”