A Needed Reprieve

We had a very good holiday weekend with one of Randi's high school friends and her husband coming to visit for a few days. Their first child is due in September. She was a ton of help for us and it was good practice for them. On Friday night we were able to get a night nanny to stay at the house. We went to a fun dinner and were able to get a full night's sleep. She kept very detailed records of when they slept, when they ate, and what the meds and blood sugars were. It was actually very informative to see exactly what their sleeping patterns look like, particularly Wyatt. We were very happy with her and are looking forward to having someone here a couple nights a week, most likely until we can get Wyatt sleeping consistently between his feeds.

We were also able to take both kids out to eat a few times this week. It's so odd to have to have people be accommodating to us, with our two infant carriers needing two high chairs and an extra large table. On one dinner and lunch occasion everything went off without a hitch. They both slept the entire time we were at dinner and were able to keep to their schedule even with all the distractions and breaks from our routine. On one other dinner night out, we went to a local pizza place. It was busy and we were a little worried. They were able to stay asleep during the dinner, but during the course of the meal the music in the establishment rose considerably to a crescendo. That night we had the worst night with both of them. They were so over-stimulated they couldn't help it. We had pushed them too far, and they made us pay for it.

We have now titrated Wyatt's steroids to what is considered a replacement dose or physiologic level. He has been sleeping better over the last few days, although he is still not a good sleeper and seems to sleep better during the day than at night. As a result Randi and I are extremely sleep deprived. He does seem to be much less agitated and in general a much happier baby. If his blood sugar continues to hold steady, we will titrate his other medication as well. The ultimate goal is for him to be free of these medications completely in the next month or so. They are both eating above the estimate amount for their size and age. We are hoping this will translate to more pounds for them both, especially Wyatt. They are holding their feeds pretty well, although Parks has started spitting up in larger quantities but does not appear to be in any pain. We are getting more efficient at feeding and getting them down without too many hiccups (literally and figuratively).

UPDATE: Randi took both boys in to the pediatrician's office today. Wyatt is now 5 pounds, 7 ounces, and Parks is 8 pounds, 12 ounces, 5th percentile on the normal growth curve.