Pediatrician Update

We had another successful visit today with Dr. Chung, who we really have taken to. Liam is up to 6 lbs, 8 oz. When he was born, he was 5 lbs, 6 oz but had dropped to 5 lbs, 2 oz over his first few days. When we left the NICU on November 20th, he was back up to his birth weight. He was originally charted at 12% growth percentile on a Down syndrome chart and is now up to the 20% percentile. He won't be "allowed" to gain too much between now and the surgery or move to another percentile because retaining too much fluid is harmful with open heart surgery. But if we stay on track for surgery in March, he should be just about 10 lbs. Keeping our fingers crossed!

The other key weekly check we do with Dr. Chung was to have his oxygen saturation levels checked and they are consistently in the mid 80s. Most babies are at 97-100 but because of his particular heart condition, he should be 80 or higher. If this number begins to get lower than this, it will be go time for the surgery. It measures the amount of oxygenated blood being pushed out to his body- all adults are typically 94 and up according to the cardiologist.

We have learned some tricks to monitor him at home without an actual electronic monitor- if he begins getting purple in the face (when not pooping because when he goes, he is a little old man who grunts and scrunches, funniest thing ever, all he needs is the paper to read). The blue/purple color means his levels have dropped. We are supposed to take his legs, bend them and push them towards his middle which helps bring the levels up. Also, raising him up so he is sitting or on our shoulder as if he is burping is supposed to bring those levels back up. However, most "tet" babies do not have blue spells until they are about 8 months old. We haven't seen one yet and hope that continues!

In the not so great news but minimally concerned compared to the rest of his health, little man looks to have a bellybutton hernia and apparently, his left testicle has not descended yet. Some babies take about a year to drop. These might need surgical repair as well and we are making appointments to meet with those specialists. Poor thing, he just isn't getting an easy start but with a repaired heart, he will do great.

Since being released from the NICU on November 20th, we have now had 8 appointments with various doctors. Liam's fantasy team as I refer to it includes pediatrician, cardiologist, geneticist, soon to be surgical team, urologist and another surgeon re: hernia. He also will be meeting with early intervention specialists which includes a speech therapist, occupational therapist and physical therapist. He has been a gem at the doctor's so far and only seems to mind having his blood taken or temperature taken from you know where..as as his official general manager, I see a pennant in the near future much like the Yankees.