2003 Journal Links

John and I are in agreement that yesterday was the most trying day of our lives. Archie’s breathing was labored and quick when we first arrived in his room in the morning. As the morning wore on, his breathing got worse and worse until his chest was heaving in and out. Since the labored breathing is indicative of congestive heart failure, the neonatologist listened to Archie’s lungs to see if he could hear any fluid in them, but he said he couldn’t hear anything. Even though the doctor was unable to hear anything in the baby’s lungs he ordered a chest x-ray to see if the baby’s lungs were filling up with fluid.

Archie breathed harder and harder as the day went on. He looked miserable. He slept fitfully and whined and cried. He didn’t interact with us at all. During his tube feedings, Archie’s heart rate would drop to below 100 and he would gag and choke. John and I would have to pick him up, lean him forward and rub his back. He was barely able to finish his feedings. Archie’s nurse kicked us out of the NICU so that hematology could come take blood samples and put in an IV. The baby has thick blood so it’s difficult to take blood from him, and they also had a tough time putting an IV in (they eventually had to put it in his scalp).

As if all of this wasn’t bad enough, the radiologists x-rayed the wrong Baby Boy Moore (there are presently two in the NICU) and we had to wait even longer for the radiologists to come by the NICU again. When the x-ray was taken and returned, the neonatologist did see some fluid in Archie’s lungs, but not as much as he had anticipated seeing. The doctor ordered Lasix, a diuretic to help Archie’s body flush out the extra fluid. He also paged Dr. Horne, Archie’s pediatric cardiologist, for a consult.

Dr. Horne visited Archie later in the afternoon and performed an echocardiogram on him. He said that there were “no surprises,” that he felt his initial diagnosis was still accurate, but that he did see some fluid in the bag around Archie’s heart. Dr. Horne also expressed some surprise that Archie had begun congestive heart failure so quickly, but that was ok because each baby is different. I asked Dr. Horne if this meant that Archie would have to go for surgery earlier than expected. He thought for a long time and then said, “There’s a lot we can do with medication before we reach that point.”

John and I finally left the hospital late in the afternoon. When we arrived home, Archie’s nurse Judy called as she leaving the hospital. She wanted us to know that Archie was doing much better on the medication, and that he was resting easy and had followed her around the room with his eyes when she was in his room checking on him before she left for the evening. Yesterday was the first night John and I didn’t go back to the hospital in the evening. We just couldn’t. We were emotionally spent and knew that Archie needed to rest. My parents did go to the hospital, though, and sat in Archie’s room with him later that night. A Eucharistic minister from St. Mary’s came by when Mom and Dad were there and visited with Archie and prayed for him. The little guy needs all the prayers he can get these days.

Today Archie is doing much better. He is resting easier and is more alert and social. He still looks slightly miserable, and the IV that had been placed in his scalp yesterday afternoon was leaking. He kept batting at the IV. John and I were relieved when the neonatologist ordered the IV removed during his rounds. When the nurse took the IV out, some of Archie’s hair was pulled out by the tape. Poor little guy.

Archie is getting his strength back and the neonatologist was encouraged by Archie’s progress. As we were tube feeding him, John and I noticed that Archie was moving his tongue around. We pressed on either side of his mouth to see if he would root toward the stimulus, and he seemed to do so. Hopefully Archie will take his bottle now that he’s on medication and will have the opportunity to regain his strength.

The neonatologist did note, though, that Archie’s liver and spleen still felt enlarged. Archie’s white blood cell count was slightly up although still hovering in the “safe” range, but he had more “blasts” than he had in the past. Hematologist/Oncologist Dr. Stroud has been examining Archie on a regular basis and watching his blood counts, so if there were anything to be concerned about regarding the white blood cell count I’m sure that Dr. Stroud would have visited with us and shared his concerns. Oh, and the psychologist came to visit with us again. John and I like her.