April 27, 2009

Demetri has been doing well since his surgery last Tuesday. He has regained all of his weight and is up to 3 lbs 12 oz! He is actually starting to fit into his preemie clothes. And his little cheeks are also filling out.

He has been at his full feedings for a couple of days and today it was increased again to 32 ml for his weight gain. He still has the PICC line, but no IV fluids are running through it. He seems to be struggling a little with bottling all of his feedings now. His nurse had to put in an NG tube last Friday when he got up to 25 ml feedings. He did very well eating the smaller volumes, but seems to get tired and uncoordinated with the larger volumes. Now we are offering him a bottle with each feeding for 10-15 minutes. This way he gets to enjoy his bottle, but we are not pushing him too hard. The really good news is that he has not had any problems tolerating his feedings... no residuals and no vomiting!!! They have also started him on Prilosec for reflux.

The doctor is trying to find the cause of his feeding troubles. Today a plastic surgeon came to evaluate his "small" lower jaw. He thought he looked fine and his x-rays of his jaw looked normal. Next, he should be having a swallow study tomorrow or Wednesday. This means they use an x-ray machine and watch him drink from a bottle (with contrast in the milk) to see how he swallows the liquid and if he is aspirating any of it into his lungs.

Last Thursday they stopped the Caffeine. So far he has not had any apnea events. The Caffeine stays in the body for about 5-7 days after stopping, so we should start to see if he is having any events off the medicine soon. Hopefully he will not have any, which means we can take him home off a monitor this time.

Here he is sleeping in his new crib at Children's Mercy with his bear friend.

I talked to the discharge nurse today, she cooordinates all of his appointments after discharge and gets him ready to go. It is nice to start thinking about him coming home soon.

In all, Demetri seems to progressing well during this hospital stay. We seem to have little ups and downs every day, but mostly ups. He has had some good nurses taking care of him (and great ones at Overland Park) which helps us leave him at night. Eleni is wondering when he is coming home and when she can go visit him (the NICU is closed to siblings during RSV season). She goes into his room often and talks about him. We are all looking forward to having him here at home.