Evan is doing better than anyone would have guessed that a ‘heart baby’ would be doing. Heart babies with conditions like Evan’s tend to have too much blood going to their lungs; this causes excess fluids to accumulate in their chest making breathing difficult. The breaths become shallow and fast causing a buildup of carbon dioxide in the body. Evan’s chest x-rays have been clear and his breathing has not become rapid enough for the doctor’s to worry. If this does happen then they will put him on lasix (water pill) to force the fluids out through his urine. They may also change his breathing air from ‘room air’ to something with lower oxygen (higher nitrogen) content. The air we breathe is about 21% oxygen and 78% nitrogen. Oxygen is a vasodilator, meaning that it causes veins to dilate or expand. Lowering the oxygen content in the breathing air will cause the veins to constrict and less blood will go to the lungs, which in his case would be a good thing. Reducing the flow of blood to the lungs is one of the goals of the first surgery, more on that later.

Yesterday Evan decided that he didn’t like his feeding tube and gave it a good tug before I could grab his hand. He only managed to pull it out a couple inches and it easily went back in. He hated the tube and I think it was impacting our attempts at feeding him normally. Since he had taken his last couple bottles without issue, the nurse took out the tube and he’s been great ever since. This morning during rounds the doctors increased his food intake again. Sarah’s attempting to breast feed but we’re not quite there yet. We’re getting closer and closer at every feeding. He’s gone from 22 to 33 to 44mL of food (breast milk and formula) with the remainder of his calories coming from an IV.

Evan got his first bath a couple days ago. Mom and Dad gave him a nice warm sponge bath in his bed. He did awesome, he wasn’t screaming or anything. We’ve barely heard him cry at all. I am sure that won’t last, but we’re enjoying it while it does. His skin is crazy dry so we’ve been liberally applying baby lotions to it to keep his skin from cracking and getting sore.

Evan’s surgery is scheduled for the morning of Thursday July 28th. It should begin at about 8:30am and last 3-4 hours. The surgeon has not talked to us about exactly what is going to happen yet but we have talked to the cardiologists while they were making morning rounds. In general, two things are going to happen during this surgery, 1) Evan’s pulmonary artery (the one that sends oxygen poor blood to the lungs) will be severed from the lungs and combined with the aorta to provide larger and more consistent blood flow to the body. 2) A shunt will be put in place to send blood (in a smaller quantity) to the lungs.  The surgery will begin by putting Evan’s heart on a bypass machine. His heart will be stopped and the surgery will be underway. A nurse will provide us with regular updates during the surgery and we’ll get a tour of the cardiac ICU to help keep us occupied.

Post-surgery Evan will go to cardiac intensive care for about a week. After this we may go back to the NICU we’re in now, or if he’s doing really well, we’ll go to the normal general care floor for another week or two. If all goes well then we’ll be going home about 3-4 weeks after surgery.

If you would like to learn more about his condition and the surgeries you can read about it on our website here.