Bobby Bobba-Loop's Hospital Adventures

It's been a rough 5 weeks since Bobby was born (he's been in the hospital for 3 of those 5 weeks)... As Anne's last entry discusses, his latest hospitalization started last Thursday (5/1) with symptoms of congestive heart failure (rapid breathing, fluid on the lungs) and poor feeding. We're both exhausted from being at his bedside 24x7, frustrated with Children's Memorial, and not really any closer to discharge.

Shortly after he was admitted to the hospital, the doctors decided that Bobby needed a feeding tube (nasogastric - NG tube), and we were very hopeful that it would solve the feeding issues, but this has not been the case. Instead, he's having problems with food volume, gagging, vomiting, continued excessively rapid breathing, etc. Even the hospital has not been successful at getting him to gain weight... he's the same weight now as he was when he was admitted there (3.38 kg = 7 lbs 7 oz). So, in an effort to give ourselves some respite, we've opted to have a nanny pull the night shift for us at his bedside a couple of nights next week, and Children's has finally (and graciously) offered to loan us a nursing assistant for a few hours, for a couple of nights, too, so we can get some sleep. Bobby's on a telemetry unit at Children's and not the ICU, and in my opinion, they have a really poor policy on how frequently they check on their kids on telemetry... the nurses are only required to do checks every 4 hours. Which means, Bobby might be vomitting from his feeding tube and no one would know it until the next time the nurse checked on him, perhaps 4 hours later. For this reason, we feel like someone needs to be there all the time, since clearly their staff won't be. Frustrating!

Anyways, Bobby's on 3 different heart meds now (2 diuretics and Digoxin), and if we can get some weight on him, hopefully he'll be able to have his heart repair done when he's 3 or 4 months old. That should resolve most, if not all, of the breathing, lung fluid and eating issues we're seeing. Hopefully the three of us can hang in there until then! We're very lucky he's such a forgiving, patient, wonderful little baby, because in addition to the medical stuff going on with him, we're still new parents and are still learning how to take care of our first child!

For now, we're taking things one day at a time. :-)