Busy gaining weight to avoid heart surgery

This blog is more about Sheena's baby brother who is now three weeks old - but he has been the big deal of late.

He is out of hospital, with a strict regime to gain weight over the next month, in the hope that he will grow, but the holes in his heart won't, thus reducing the symptoms.

He is on lasix (diuretics), and captopril (to reduce this blood pressure), and polyjoule (a syrup to be given after each breastfeed which is very high in calories). He gets weighed 2 times a week by a nurse that comes to our house. We have to keep him away from anyone with a virus, and basically reduce anything that is going to make him work too hard. We have to keep him especially rugged up, and avoid big changes in temperature as much as possible to avoid him wasting energy trying to keep warm.
The final decision after 4 echo's was that Roy has Swiss cheese VSD's, or multiple vsd's ranging in size from 3.5mm to 1mm. Each hole on its own is considered small, but because he has several it caused the heart failure. The doctors are hoping, that by waiting one month the holes will spontaneously close or significantly reduce. There is a strong case for this because:
1. The holes are relatively small and if they were in isolation they would probably not have caused him any bother.
2. They're in the more muscular part of the wall which apparently means they can close more readily
3. Being in the muscular part of the wall, surgery would be very difficult at this point, as its hard to locate them through the various muscle fibres.
4. The only surgery they could do now is to put a band on the pulmonary artery, so it is not a complete solution, but would stop the heart failure problems.

Here is Roy's journey from hospital to home again. He was in for 13 days.


1. Initial few days in the high dependency room on the cardiac ward. Plugged into lots of monitors.
2. A precious wee cuddle with dad before going back under the lamps to get rid of the jaundice.
3. Back under the lamps again, but with less tape on his face as the oxygen prongs are no longer needed.

4. Off most of the monitors, still looking rather sick though.
5. Two days before discharge. Still have nasal gastric tube, and still alternating BF with NG feeds.
6. Back home again, feeling free and happy.