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4/24/92 (Day 160) — Children’s Memorial Day 12

April 24, 2011

Poor little Isaac was exhausted all the time. He was probably hungry all the time, too, but eating wore him out. He would take just enough to take the edge off, then fall asleep restlessly, only to wake again in about a half an hour. Just reading these nursing notes exhausts me. His tummy was always gurgly, too. The things that calmed him were rocking and patting, and swaddling him tightly and putting him in the baby swing. And of course, being fed every 30 minutes. Meanwhile, back at Children's, things were moving at a glacial pace. The staff seemed utterly uninterested in trying to wean Molly from the vent and we were getting more anxious by the day, knowing that the longer she was ventilated, the more damage was being done to her lungs and the longer she would need ventilation — the Catch-22 of the miracle of assisted breathing.

At midnight, dad reported that Isaac “didn’t eat well and slept most of the day.” He was down 275 ccs form the day before. They have been trying to feed him since 8:00 p.m. with no success. I received Isaac awake but drowsy and fussy while being carried by dad. Skin was warm/dry. Respiratory effort increases with increased activity to the 60s (rest rate in low 50s). Color pink. Breath sounds clear with good aeration. Easily aroused from sleep. Offered bottle of 1/2 breast milk 1/2 formula and he at 5-10 ccs eagerly in about five minutes. He would fall asleep and then wake up five minutes later crying. Pacifier does not calm him down. Took 50 ccs at 1:00 a.m. with frequent rest periods and burped well. When sucking on nipple, Isaac has increased respiratory rates in the high 60s with very mild substernal retracting, color pink. At rest, respiratory effort slow/easy in the low 50s. At 2:00 a.m. he slept while being held, but any attempt to put him in his crib, he would wake up crying. He calmed down when held and patted on the back and after 20 minutes, he went down in his crib and continued sleeping. Slept only 30 minutes before waking up crying and fussy.  Took 30 ccs of 1/2 breast milk, 1/2 formula in 30 minutes with frequent rests and burping. Slept well until 5:30, when he awoke with a crying spell. Calmed down when held and patted, but would cry at any attempt to return him to the crib. He was very sleepy and refused the pacifier. Took 30 ccs of 1/2 and 1/2 in 30 minutes. Noted audible bowel sounds even when having a burp. Very irritable. Gave Mylicon and he fell asleep in my arms and stayed asleep when put in crib, crying occasionally in his sleep. Awake again at 6:00 a.m. Took 30 ccs of 1/2 and 1/2 in 30 minutes. Rocked him to sleep for 15 minutes and he finally fell into a quiet sleep until 8:00 a.m.

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