2003 Journal Links

Today was Archie's due date. When John and I walked into the NICU this morning, Dr. Hayes called to us from down the hall. "There's Archie's parents!" he said. He walked with us to Archie's room and examined his spleen and liver again. According to Dr. Hayes, Archie's spleen and liver feel normal and his white blood cell count is down to 53,900. His red blood cell count, hemoglobin and platelet counts are still elevated. All good news.

Sue worked with us again today during Archie's 9 a.m. feeding. She was able to feed Archie 10 cc's. We were very pleased with that progress as Archie had a horrible night the evening before.

On Monday night Archie was very congested. He sounded as if he was drowning in phlegm each time he took a breath. The lines on his monitor were all over the place, indicating that he was regularly taking 80 to 110 breaths per minute. The neonatologist had ordered Archie's nurses to place him on his stomach to sleep late in the afternoon to help ease the congestion. John and I didn't know about the doctor's orders, so we panicked when we walked into the room and saw Archie on his stomach. As I was turning the baby over to place him on his back, John was walking down the hall yelling, "Who put my baby to sleep on his stomach!?!?" Archie's nurse came into the room and explained the situation to us. She told us that she had called the doctor in when she checked Archie's vitals and found him so congested. The doctor listened to Archie's lungs and said that they sounded clear. If his lungs had fluid in them, then the doctor would have concluded that Archie was going into congestive heart failure. The nurse then gave us our first post-birth talk about congestive heart failure. Both John and I knew that Archie would inevitably go into congestive heart failure, but in our excitement over the baby's arrival we forgot how soon the heart failure could happen. Both John and I were very upset and stressed when we left the NICU last night. Archie's nurse told us to go home and get a good night's rest and trust our son to the "best babysitters in Greenville."

We talked to Archie's neonatologist again this morning and he explained that we actually want Archie to go into congestive heart failure. If he does, that means that things are progressing with Archie's heart defect as anticipated. If Archie never goes into congestive heart failure then that would indicate that other problems may be present and that he would not be prepared to undergo surgery when it's time.

Today we learned that Archie's across-the-hall neighbor also has Down syndrome and an AV Canal defect. We found out that although she also had a very difficult time learning to feed, she's quite the little eater now. Knowing her story really encouraged John and me.

As John and I were sitting with Archie today we watched as our son repeatedly picked his head up all the way off the bassinet mattress and turned his head around so that he could sleep on his other cheek. Unbelievable. I mean, the little man was able to push himself up, off his chest, all the way to his waist. Not too bad for a baby who is supposed to have diminished muscle tone. Even his nurse was amazed. When we called the hospital to check on the little guy around dinner time, his nurse shared her excitement with us about Archie's neck strength.

When we feed Archie this evening his heart rate dropped below 100. That was very frightening, but Archie's nurse taught us how to handle the heart rate drop. She explained that the drop was due to his confusion during feeding and predicted that the drops would stop as soon as Archie was able to coordinate eating. During his 9 p.m. feeding, Archie took another 10 cc's.

The baby is still jaundiced and tired, but just the same he responds to John and my voices. He opens his eyes and studies our faces. That's also when he steals our hearts.

Here's to hoping that Archie's congestion dissipates even more tomorrow.