| Later updates | Aaron update 154 |
| Subject: Aaron update 154 Date: Thursday, April 7, 2005 10:07 PM From: Kevin Quick To: Aaron Update List How about a GOOD report to end the week on a high note? I could go for that. Yesterday, we met with a team from UCSF (University of California, San Francisco), headed by neonatologist Dr. Robert Piecuch, director of the ICN (intensive care nursery) follow-up program for their department of pediatrics (see https://www.ucsfhealth.org/childrens/special/i/11215.html). This team was in Clearlake for a doctors' meeting, and our Redwood Coast Regional Center Early Start Coordinator, Vicki-Bitonti-Brown, had had arranged our special visit with them at the Public Health Clinic in Clearlake. Kathleen and I had braced ourselves for another barrage from this team of doctors, knowing that they might agree with Aaron's gastroenterologist and strongly recommend the g-tube for Aaron. To our surprise, however, we had an extraordinarily pleasant visit with Dr. Piecuch and his team. Dr. Piecuch probably has more experience with follow-ups with 24-weekers than anyone that we've met thus far, and he was full of helpful and encouraging information for us. Dr. Piecuch said that 26-weekers have generally been in the womb long enough that the survivors escape most of the long-term preemie problems. 25-weekers, he said, often have problems due to complications such as brain bleeds, chronic lung disease, etc., rather than having problems stemming simply from their prematurity. Surviving 24-weekers, however, in addition to problems from complications, often (40%) have developmental problems, as well, that stem simply from their prematurity, apart from any brain bleeds, cerebral palsy, lung disease, etc. For this reason, Dr. Piecuch routinely counsels prospective parents of 24-weekers about the high probability that their child would have major, life-long problems, and that these risks must be considered carefully before the decision is made by the parents on the extent to which resuscitation should be attempted (i.e. that it might be best for everyone involved just to let the baby die.) The good news, according to Dr. Piecuch, is that Aaron, as well as not suffering from any residual complications, as far as we know, is apparently very strongly in the 60% group of 24-weekers that is not experiencing any significant developmental delays due simply to prematurity . He repeated several times that Aaron is a very healthy, charming little boy. When we relayed to him some of our past experiences with Aaron's pulmonologist and gastroenterologist, how our visits with them invariably left us feeling worried and bewildered, he said that yes, he understands why these doctors had been cautious in their assessments, and said that he, too, is cautious when counseling parents of 24-weekers when the kids are only a year old; the kids haven't yet gotten to the point where a solid developmental assessment can be made. At two and a half years, though, he said, we can tell pretty well how the child is doing, and as it's doing at two and a half years is probably how it's going to be doing at school-age. In other words, since Aaron is doing well now, we expect that he'll be doing well when he reaches school age and beyond. And if there are some minor delays with language, fine motor skills, etc., these things are not beyond the scope of routine therapy, and can be worked on if and as needed. Dr. Piecuch definitely recommended against the g-tube for Aaron, because of the multitude of feeding complications that that would introduce for Aaron. Much better, he said, to just feed him from now on as a normal 2-year-old, not even trying to coax him to eat more than he wants to. At this point, he said, Aaron is smart enough to see through all of our "feeding games," and that these games will now impede, rather than encourage his eating. Yes, Aaron is still very small, but Dr. Piecuch didn't see any medical reason to "treat" his smallness. (By the way, I need to make a correction from our last update, where I said that Aaron was in the 2nd percentile (bottom 2%), weight-wise, for 24-weekers. That is incorrect; Kathleen had misunderstood the nurse practitioner that she had spoken with on the phone. Aaron is in the 3rd percentile, weight-wise, for ALL kids, born prematurely or not. This is good news.) Dr. Piecuch said that as soon as he saw me walking into the examining room with Aaron, he thought to himself that there probably is a strong genetic link between Daddy's and Aaron's slim build. He confirmed that Aaron's growth can catch up any time from now until he's 20 years old. He said that he will likely have a major growth spurt in later adolescence, as I had, and that it is still very possible that Aaron will be an average-sized adult. Dr. Piecuch pointed out that although Aaron is in the 3rd percentile for overall body weight, he's in the 10th percentile for head circumference. This is good. Dr. Piecuch counseled against our seeing an endocrinologist. He said that the probability that Aaron has an HGH (human growth hormone) deficiency is close to zero, and that if we were to try to boost his HGH now, that that would entail giving Aaron shots twice a day for a year or more, and would probably result in some, but not dramatic growth. And, he said that an endocrinologist would tie us, his parents, in emotional knots more than the pulmonologist and GI had; he would have us worried that much of Aaron's chemistry is out of whack, and that he needs to be treated for many different things. Dr. Piecuch recommended that we DO take Aaron to church now (We went for the first time on Easter Sunday; it was a success, and it was so good to see many of you again! And thank you, Pastor Johnathan, for announcing our presence and for making us feel so welcome!). The exposure that we give him to germs now will help Aaron's immune system to develop, so it'll be in good shape by the time he reaches school age. "He's doing fine," Dr. Piecuch said. "He's a charming boy. Enjoy him." It was a great visit. We came away from the appointment feeling refreshed and invigorated. Now, we can focus more on being a family, and on enjoying both of our kids, while putting a lot of the big worries behind us. Thank you all, sincerely, for your prayers for Aaron and us over the past two years. God only knows how much your prayers have contributed to Aaron's being where he is today. God is good, and we thank Him often for your love and prayers on our behalf. Thank you. After our last update, several of you asked for a recent picture of Robin. So, here's one that we took today, while we were at Kathleen's podiatrist's office in Santa Rosa. Robin was sitting in the patient's chair, and having a good time. Lots of love to you all. Have a great weekend. Love, Kevin, Kathleen, Aaron and Robin |
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