We met
with cardiology and pulmonology today in a 5-hour visit to the hospital clinic.
They did an echo, an EKG, and an x-ray. The conclusions: she has very mild
septal flattening while off oxygen so she will stay on the oxygen and continue
the sildenafil. We can take her of the Lasix. Her oxygen saturation levels are
low so she is now up to 1/2 liter instead of a 1/4 liter. The x-ray showed that
she had hyper-inflated lungs so she is starting on steroids to address the
inflammation. She will have 3-5 days of a ‘steroid burst’ and then we will
continue to give her inhaled steroids for 3-6 months. Evan and I are both
unhappy about this, particularly Evan. I am hopeful that we can keep this
shorter rather than longer but it is important to protect her lungs as much as
possible.
She gained weight again - averaging 25 grams/day for the 18 days between clinic visits. She is now 4.95 kg (10.9 lbs). We think of her as a normal-sized baby but she is really still quite skinny.
She gained weight again - averaging 25 grams/day for the 18 days between clinic visits. She is now 4.95 kg (10.9 lbs). We think of her as a normal-sized baby but she is really still quite skinny.