Bobby Bear's back where he belongs

Bobby's hospital adventures have come to an end, hopefully until his surgery. It wasn't easy. We spent 10 days experimenting with heart medication and diets and were almost ready to go home when Bobby started having mysterious temperature spikes. As is the protocol with young infants, the hospital did blood and urine cultures and a spinal tap. All were negative so they cut us loose even though he was still having the fevers. We've spent the last week working with our pediatrician trying to figure out the problem. More blood tests and more sticks of the needle haven't revealed any major infection. Fortunately, the spikes are becoming less frequent and less severe so we hope that they will soon be a thing of the past.

In keeping with our family traditions, Bobby hasn't allowed his fevers to stop him from gaining weight. Since we hit upon the right type and frequency of formula, he has blossomed from 7 lbs 6 oz to 8 lbs 12 oz in just under two weeks. All this after having been stalled for the three weeks before then.

We're thrilled to have Bobby at home. Its sometimes scary - two days after he was released we were back in the emergency room because his respiration rate was above 100. The doctors have explained that we will just have to live with some of these moments between now and the surgery. Still, now that we're home we can appreciate some of his development. He can now maintain eye contact for short periods of time. He gives us small smiles. He loves his light projection toy - cooing and waving his arms at the light patterns we project on the wall.

His first Early Intervention assessment was Wednesday. EI is a state sponsored program that sends speech/physical/occupational/developmental therapists into the home of special needs kids. Until Bobby is 3, we will have access to these home visits with financial coverage being provided first by our insurance and, if and when that runs out, largely subsidized by the state.

The visit was a little difficult - already Bobby is getting scored. His cognition is at a 2 week level, his movement at a 1 month level, etc. It's tough to hear those numbers and know that we'll be hearing different versions of them for the rest of his childhood. For now, Bobby will receive speech/feeding therapy. The other areas will wait until after his heart surgery. As the therapists reminded us, no child with heart failure develops on schedule. We won't be able to make big gains with Bobby until his surgery.

So, lastly, what about that surgery? Tomorrow Bobby is going to be sedated while he gets an MRI and echocardiogram. These tests are necessary to ensure that the surgeons have the most precise measurements possible. We then have our surgical consult this Friday. After that we'll know a lot more about what the next few weeks hold.

Thanks to all of you for your support over these weeks. 7 weeks down. In another 7, we'll hopefully have a heart healthy baby.