By request

We've heard that some of you would like to see Toby's new look now that he's gained so much. So here he is, starting with his super-baby look.











He has had a nice uneventful week. He had been refusing bottles when he was ill and on steroids but has started taking 2 or 3 a day again. So, hooray!

Thursday, Toby saw the eye doctor. As long as he is on oxygen, there is a chance of irregular blood vessel growth. So she continues to monitor him. But he's doing great.

He is still battling his cough, but we like to think there's improvement. His lungs are handling it ok, which is the important part. The steroid he's been on this week definitely made an immediate difference. Meanwhile, more of his siblings have joined in so that we have a cacophony of coughs.

I know it's snowing out, but I feel spring in my bones. It's coming. We are eager for it and to get Toby out in the bigger world again.

Is the scale broke?

15 pounds is what Tobias weighed in at today at the surgeon's office. 11 days ago, he was weighed at 13 pounds 5 ounces which is 27 ounces less. That would make his weight gain more than 2 ounces a day. I don't know. My mind is having trouble believing that's possible. But he IS looking big and plump and giving the doctors the "catch up" growth they wanted. So good news. He is recovering well from the surgery and is a lot more comfortable since the swelling has had time to go down. He is also completely off reglan (O, happy day) and has received permission to try stopping the other 2 reflux drugs one by one. We are thanking God for the good results from the surgery.

Toby also saw his pulmonologist. He has been battling a cough and cold for the last week and it has started to move into his lungs a little bit. She is giving him another course of steroids and extra breathing treatments and sounds hopeful that he can get past this without anything more serious developing. More good news.

In the true confessions category, I will mention that Toby DID have a trip to the emergency room Friday evening. There was absolutely nothing wrong him, however. I just grabbed a pair of scissors in a moment of frustration and struggle with a piece of tape- and snipped a hole in his g-tube. 5 seconds to make the mistake, 5 hours to fix it. He had to have a new tube put in. The surgical site is not yet healed so even the ER doctors could not replace it but had to call the surgeons in. How do YOU spell embarrassment? Toby's pulmonary nurse walked into the room today, looked at me and said, "measure twice, cut once". Yes, that little incident is part of his medical record now and there for all to enjoy. So smile along with us- and thank God with us that He continues to protect Toby from serious illness . . . and from his mother.

g-tube

Here is a look at Toby's new g-tube for those who are not sure what I've been talking about. One end is located inside his stomach and held in place by a water-filled balloon. The other end can be hooked up to more tubing so his milk can be run directly in. We are using a pump to control the rate. Right now, he is on the pump (i.e. eating continuously) for about 14 hours a day with time off for good behavior. Good behavior equals willingness to take a few ounces from the bottle and is rewarded with freedom to get up and play.



Free from his oxygen tubing for a few minutes today after his bath:


All hooked up again and back to sweet dreams. His last visit to the hospital, one of his doctors used him to explain to her students that you can spot a preemie by his "toaster head", the flattened sides from laying on them and being flipped like a pancake when he should have been floating and growing in the womb. An accurate assessment, perhaps, but one cute piece of toast.

11 months

Toby has had a fairly good week. He is still being fed by a continuous drip through his new g-tube, but we have begun turning it off during the day and trying to reintroduce the bottle. He has not been very interested in it yet, but is taking a little bit more each day. He saw the pediatrician yesterday (for his monthly shot) and has gained 4 ounces this week.

He seems to be recovering well from the surgery. For a while afterwards, he seemed unwilling to use his stomach muscles and sit up. Now he is back to the vertical, playing, and a lot of fun.

He does still seem to have reflux-like discomfort at times. So no verdict yet on how successful the surgery was.

I know it has been a while since any photos went up. The camera took a vacation, but has returned. Here's a look at him without the ng tube (hooray!) and enjoying a good book.

Home again

We made it home last night and have the new equipment up and running. Toby has had a good day today and seems to be feeling pretty good. He is still on continuous feeds but we plan to try some bottles in the next few days. We are eager to see how he feels about them now that the ng tube is out of the way but want to give his stomach time to heal. His stomach is also smaller now that some of it was used to form the wrap so he may not be able to handle as much. Meanwhile, we are very thankful for the smooth sailing so far since surgery.

Toby is fairly comfortable today, playing and resting. It was amazing yesterday to watch him improve hour by hour. He was just up a couple times during the night with discomfort and it is manageable with Tylenol and Motrin. He is being fed by a continuous slow drip and is now receiving the full volume he needs, so the iv is off. He will be fed this way for the next couple weeks at home while the stomach heals and adjusts. Then we will be able to try a more normal feeding pattern. It sounds like we will be here today. His pulmonary doctor wants a chest x-ray. We will have training tomorrow with the new feeding equipment and then we should be home!