08/16/2007

Wow, it's getting harder and harder to update. I rarely get time on the computer anymore. Erik is completely addicted to iTunes, so he has the monopoly on the computer right now. He says it's my fault that I got him started on it. Oh well. Yesterday was our first high-risk clinic visit at the U of I. The key word of the day was 'impressive.' They said that Emery and I both look great. Dr. A said that parents come in at the first visit tearful and frustrated, and had he seen me just the previous night that is how I would have been. Emery had a literally amazing episode of VABS and has now turned to throwing up with crying. We've been given some tactics to try and minimize that. They went up on his O2 in the afternoons to try and decrease some of his fussiness and went up on his feeds as well, (they were happy with growth, but wanted a little more.) When we left the NICU, Emery weighed 13 pounds 10 ounces. Yesterday he weighed 14 pounds 5.5 ounces. They want to make sure he stays in the 20- to 40-gm a day weight gain (which he had, though on the low side of it). His feeding is also going well. I went in to a great deal of explaining yesterday how Emery does great in the mornings with his eating by bottle and then it tapers in the afternoons as he gets fussy, so they decided to up his O2 in the afternoon for that reason, and they want me to give him some tube feeds in the afternoon as well to make sure he is getting good calories, and then yesterday, just to make a liar out of me, Emery came home and took 2 very large bottles late in the afternoon. They feel that developmentally Emery is at about a 4-month level. We also were reminded yesterday how deceivingly well Emery looks. As the NP was testing his developmental skills, Emery's work of breathing greatly increased (it doesn't help that he never stops talking - yes, he's like his mother) and that he really can only tolerate just a few minutes of tummy time a day. They told us to be 'extremely paranoid' about Emery's health from now on. His risk of re-hospitalization is very high, over 50%, so they want us keeping him home as much as possible, and from October to about April we're to become complete shut-ins, save for visits to the doctor. Today we went for his well baby visit to his pediatrician in town, and he had to get shots, and he's been a little cranky since. They actually made us wait for an hour in a hot room while Iowa City faxed literally dozens of records before being seen by a doctor. We showed up at noon, got seen at 1:30 p.m. Emery was pretty cranky by then. This is a time when a PEG tube is a God-send! Anyway, he's unhappy and a little crabby now, so he's napping and I'm finally getting to a computer. I have finally started a blog, though it's not quite ready to be directed to, so expect the link for that in just a few days. I hope you all follow us in our next phase of preemie-hood!