The Duff Family: July 2008

Well, as usual, a lot has happened since I last posted. The doctors removed Charlie's feeding tube the Saturday before last and he has been eating exclusively from the bottle ever since. He had a little trouble keeping his weight up at first, but they have since increased the calories in the formula that gets mixed with the breast milk. Also, he is getting better and better at taking more volume from the bottle everyday. Charlie's only real problem with the increased bottle feeding has been spitting up, but we have learned to be patient with him and give him plenty of time to burp, which usually helps keep things down.

Another major step forward, was another attempt to take Charlie off of the nasal canula oxygen. From Saturday to Monday he was Charlie was completely off any extra oxygen. I have attached a couple of picture of him with NOTHING on his face. It was actually a really emotional experience to see his cute little face free of wires and tubes. Somehow, after all this time is was nearly as stressful seeing him look like a normal little baby as it has been to see him get poked and prodded for the last few months. Along with that, we spent all day Monday talking with Charlie's doctors, nurses and therapists about all the details of taking him home and whether or not he needed to go back on the oxygen.

The plan by that afternoon was that Charlie would be coming home on Wednesday (today) and that he would need to go back on the oxygen. Although we were elated that he would finally becoming home, I think that it was one of the most intense days we've had at the hospital since those few times we almost lost Charlie in the early days. So, after a long day of planning and preparing we went home to start finalizing items there. Somehow, we forgot that Charlie does not have any regard for our plans or anyone else's. After we had been home just a couple hours we got a phone call from the hospital. It was Dr. O'Neill, Charlie's eye doctor. He has been telling us for the last few months that Charlie was just on the cusp of needing eye surgery, but that the problem usually resolves by the time the babies are past their due date. Charlie forgot to read that medical journal, apparently, because his eyes have gotten worse and Dr. O'Neill told us that he does need the surgery.

As always there are statistics involved, so I will relay them. According to the doctor, Charlie has about a 97% of having normal vision if he gets the surgery and about a 25-50% chance of having major problems without it. So, he suggested, and we agree, that the risks outweigh the benefits and Charlie will be getting the surgery bedside today at 3pm. Please remember to pray specifically today that it goes well. The good news about the surgery us that it is a very minor operation and Charlie will not need general anesthesia, just some sedation and local anesthesia.

It's not clear yet how long this will delay the homecoming, but it could still be this week (probably Friday). It will depend, as usual, on how Charlie responds and recovers. Regardless, Charlie's room is pretty much ready to go and we have his co-sleeper attached to the bed. Shannon has washed and folded all his clothes and blankets and we've rearranged the furniture a few times. We're ready.

One last note though. We have gone back and forth with the doctors, specialists and our vet about whether or not we can keep our cat, Joey. In the end we have decided that it will be best for Charlie if we find a home for Joey other than here. It is a hard decision, but Charlie has been through so much that we do not want to do anything to jeopardize his chances at home. Consequently, we need to find a home for Joey pretty quickly. I have attached a picture of him helping me make this blog post. If you know anyone who would like him, please email me at chuckieduff@cox.net . He is an indoor cat. We do not know how he is with other cats, but he is best friends with our dogs, loves kids and people of all ages and is a great cat. We are sad to lose him and want him to go to a loving home.

Charlie is doing very well and is taking more and more of his feeding directly from the bottle everyday. The speech therapists (who also help with feeding) did a "swallow study" on Charlie and decided that he would benefit from having his milk thickened a bit. It has really helped and he is now taking almost 50% of his food from the bottle. Once he gets to 100% he gets to come home! He is also down to .1 liter of oxygen at 100% which is what he'll be on at home. The doctors gave Charlie a test run with no extra oxygen at all, but he only lasted a few hours before his saturation was low enough that they had to put him back on it. It is somewhat possible though that he may not be on oxygen as long as we previously thought.

Charlie is closing in on 7lbs and continues to be healthy. The eye doctor still hasn't completely ruled out surgery, but things are looking good for Charlie's general eye health. I am sure there are things that I am forgetting at the moment, but I wanted to get up a quick post with some pictures because I am so behind.

"Hi!"