It's been a very busy, long and tiring past few weeks and almost a month since the last update.
Community Connections' A Royal Night Out was a huge success - the second annual event almost doubled in size and doubled the money raised! The day after that, we flew to Charlotte to spend the week of Thanksgiving with family in South Carolina. The boys traveled well and we had a great time - it just took them a few days to get back into their normal routine once we were back home.
Last week Jack and Luke had the second half of their one-year shots. Luke did well and only cried until the shots were done. Jack's leg must have been asleep, because all he did was stare at the nurse with a serious face - no crying, not even a frown... In the past two weeks, Luke has had three appointments at the hospital. The first was at the audiology clinic to retest his hearing. He failed one test before coming home in January (not uncommon for babies on a lot of oxygen like he was) and this appointment has been set since the spring. Luke did fine and they just want to see him in another year to check one more time.
Tuesday Luke went to the pulmonary clinic for a 1-month followup. After his hospitalization in October, Luke was on oxygen all day and night. Last month the pulmonary clinic had us discontinue daytime oxygen and only use it at night. Luke has continued to grow slowly but steadily until now. He lost weight this past month - dropped from 5.8kg to 5.6kg. Luke is now back on oxygen all the time and we expect it to continue at least through the winter.
Since February, Luke has had monthly visits to the high-risk newborn clinic at the hospital. They have kept a close watch on his growth and development, but the doctors have been very conservative and at times slow to act when we have brought up concerns. During Luke's hospitalization in October, the pulmonary team let us know about the Medical Home Clinic at the hospital. It is a place for kids with chronic medical conditions that need the services of multiple clinics at the hospital (Luke has seen newborn, eye, audiology, radiology, and pulmonary clinics and has had two hospitalizations since being home). They will help coordinate multiple appointments by making sure they are scheduled the same day. It should be a big help and will let us squeeze things into one day instead of making three visits like we have these last two weeks.
Yesterday was Luke's first visit to the medical home clinic. Rachel was working but was able to leave her unit and be with us for most of the visit. The doctor and nurse were great and will be very proactive with his care plan. While we are excited about the change, it was not a good day. We have known since the spring that if Luke does not gain enough weight consistently, the last resort is a feeding tube.
All year long, the newborn clinic has tweaked his "recipe" and increased the calories of his formula each month. They were concerned about his slow growth curve, but his growth has been proportionate (weight, length and head circumference) - that is no longer the case. If babies are not getting enough calories, slower head growth is the first sign, followed by slowed development. Yesterday's measurements showed that Luke's head growth is no longer following his length and weight.
Luke is eating all that he can/will right now, but the doctor thinks it is only about 60-70% of the calories he needs. Babies need to gain about 20 grams per day for normal growth and Luke's best average has only been around 7 grams. The doctor is giving him one more chance until the next appointment - we are adding more calories to his formula and Luke is also starting Reglan. We do not have a date for his next visit, but it should be in 4-6 weeks.
