Michael James at one month

We learned that Michael had Hypoplastic Left Heart Syndrome (HLHS) from the routine ultrasound at 19 weeks. We were fortunate to find out early, so that we could learn much as we could about HLHS and be as prepared as possible. We worked with our insurance company to get the Norwood covered at Oregon Health Sciences University Hospital (OHSU), and made arrangements for our other four children to be cared for during Michael?s hospitalization. We were followed by a pediatric cardiologist and neonatologist throughout the pregnancy.

In June, Michael?s Norwood was scheduled for August 6; I was to be induced four days prior to the surgery. However, I went into labor and Michael came precipitously in the early morning of July 30, 2002. He weighed 5 pounds, 10 ounces. When he was a few hours old, he took the two-hour ambulance ride to OHSU, followed by dad. I went up in the afternoon. We were able to stay at the Ronald McDonald house while in Portland.

For the next week, Michael stayed stable on prostaglandin-E, with only a few episodes of apnea. He slept most of the time. I tried breastfeeding, but he would only latch on briefly, and suck once or twice.

Michael had his Norwood procedure done as scheduled on August 6 by Dr. Ross Ungerleider. He stayed on the ventricular bypass machine until August 9th. His chest was closed on the 11th, and he came off the respirator on the 13th. He was transferred from the PICU to the neonatal ICU on the 14th. He had withdrawal symptoms (vomiting and irritability) as he was weaned off morphine.

We were able to take Michael home on August 24th with a nasogastric (NG) tube. He weighed 5 pounds 13 ounces. His medicines include aspirin, Lasix, spironolactone, Reglan and Zantac. His milk is breast milk mixed with Polycose and Similac with iron. When he was too tired to finish a bottle, we would give him the rest through the tube. He was on a feeding pump for 12 hours at night. He threw up 2-3 times per day.

At 2 months old, he weighs 8 pounds and takes around 55% of his milk on his own. We now only use the NG tube while he is on the feeding pump for 10 hours at night. He still has some reflux. His oxygen saturation is about 85%. His energy level has increased, but he still sleeps 18-20 hours per day. He does smile at us occasionally.

We have been fortunate to live close to extended family. They and many friends have been very helpful in caring for our other children and helping us in numerous ways. Their faith and prayers continue to bless Michael and us. We anticipate Michael?s second surgery to be in early 2003.