Oliver is now two months old, a full 8 pounds, and yesterday he drank his whole meal for the first time! We've had a very full week and a half of seeing his pediatrician, nephrologist, cardiologist, occupational therapist, and a host medical personnel who all tried in turn to draw blood out of him.
Nephrologist - We finally got to meet Oliver's blood pressure and kidney doctor in person. Most of his specialty doctors are at OHSU (Oregon Health and Science University), but many of them hold clinic days in Medford several times a year. The bottom line from this visit was that we'll need to wait until Oliver is off the caffeine and sodium meds before they can fully get to the root cause of his high blood pressure, and that we'll wait until Oliver is over 6 months old to do further tests to determine the functionality of his left kidney. In the mean time we'll be taking him in for weekly lab work to monitor his sodium levels.
Cardiologist - Oliver's heart doctor is based at another Portland hospital, and the pediatric cardiologists from there also thankfully have clinics in Medford regularly. The doctor confirmed Oliver's
hypertrophic cardiomyopathy (thickening of the heart walls, specifically the septum between the ventricles), but also was encouraged that his heart was functioning well in spite of it and the other abnormalities in its structure. We'll see the cardiologist again at their clinic in July.
Occupational Therapist - Oliver's current occupation (besides visiting doctors and being patted and poked by Nora) is learning to eat on his own. The PATS (Pediatric Assessment and Therapy Services) group at the hospital here have been great in working with Oliver and I, especially in teaching me how to work with Oliver as he progresses. The primary difficulty for him now in eating is still his rapid breathing rate and low stamina (try gulping down a glass of water when you are tired and panting, like after a sudden sprint), both of which are slowly improving. As much and I've been trying to "help" him along, he's really done great figuring out on his own how to nurse and drink from a bottle in such a way that he can handle it, and at our last appointment he drank his whole meal! We are so thrilled! He'll use an NG feeding tube for a while still probably, but now the end seems to be in sight!
Lab work - Oliver does not give up his blood easily, and the orders are for weekly lab work. For the last two weeks it has taken 5 tries to get enough out of him, but this week they needed a larger quantity for some additional tests (kidney-related hormone levels). Five attempts, three nurses, one respiration therapist, and two and a half hours later they apologetically sent us home with an appointment to come the next day to try again. So today we went back and were directly seen by a new respiration therapist, who, after another failed attempt, sent us to the NICU to our original NICU doctor who finally got 6 mL of blood out of the poor little guy after two more attempts. Oliver the pincushion. We'll see them again next week!
He's become quite social at home here and loves being held (hates to be put down!) and tolerates his sisters' affection rather well. He's getting much stronger and tries to hold his head up all the time. We absolutely adore him. I let Elsa hold him for a bit today and found her pacifying him with her finger! (Note the "Fancy Nancy" hair-do she gave herself - she loves the books, thanks Aunt Naomi!)
Thanks for your ongoing prayers!
