Peek-A-Boo

Home and Well

Noah returned home after his surgery yesterday and is almost back to normal. I think he may still be a little tender, but that's not slowing him down much. Autumn is also feeling better as she had been running a temperature over the last couple of days. Now, if my brother Chris can get home from a back surgery and start getting better, I think we'll all be good.

Birthday Pictures

Justifying Another Surgery

Tomorrow we’ll bring Noah back to Duke to have a new feeding tube surgically placed in his stomach. It’s not a major surgery but it will require him to be monitored for 24 hours afterward. Maria and I didn’t want to put our son through another surgery. We were determined to just keep pushing the tube down his nose into his stomach every time he would pull it out or every few weeks, whichever came first, until he could eat/drink enough to maintain healthy growth. About a month ago, though, we decided that we needed to seriously consider taking whatever advice Noah’s pediatrician would give us about getting the tube surgically implanted in the stomach, the G-tube. She was on board with getting the G-tube and Maria and I were convinced that progress wasn’t coming quick enough.

We are really excited about the new tube now. We still don’t want Noah to have to go through another surgery, but we think he’s going to be much more comfortable with the G-tube. His NG-tube, the tube that enters the body through his nose, has to be taped to his face. The skin under the tape is irritated and can’t heal because it always has tape on it. The irritation causes him to rub the tape and pull at the tube, which in turn causes more irritation. So, it will be great to end this cycle and let his skin heal. It will also be great to see his beautiful face without the tube taped to it.

Another reason we want to get rid of the NG-tube is because we believe that it hinders the enjoyable sensation of eating. This was a big problem until a few weeks ago. As if the mention of another surgery has made him take eating seriously, the boy has been eating like a champ since we brought it up. Still he has medicines that taste awful that he will be on for a long time. We still feel that trying to give him his awful tasting medicines orally would cause him to dislike people getting close to his mouth with anything. That would be a big issue as we want to start him in daycare toward the end of next month. We don’t expect the daycare to have an employee available to just feed Noah and give him medicines all day.

I just feel like I have to justify this surgery because Maria and I sure don’t want to put Noah through it, especially if it’s not absolutely necessary. He’s been through enough already. We’re looking forward to the results, though, and I think Noah will be much better off. Hopefully, it will be as the doctor doing the surgery said, "The only regret people have is that they didn’t get it done sooner."

One Year Celebration

Many have seen the stories on the local Fox News of Noah’s triumph over adversity. The reporters and cameramen did such a great job with them. We have received many comments and blessings from viewers since the stories aired. The only inaccuracy in those reports was that Noah’s parents had once thought that he might not make it. I can’t say what Maria felt during the hard times, but I was always optimistic that we would all pull through. Before Noah was born, we had been built up with a lot of confidence in the staff at Duke but that’s not what carried the day in overcoming my thoughts of a world without Noah. On the night of Noah’s birthday, he was baptized and that’s when I realized that we were all going to make it through.

I’ve never felt comfortable enough to share my account of Noah’s baptism and the resulting optimism I got from it with anyone for two reasons. The first reason is that I’ve been accused of provoking bad luck by predicting good fortunes before they arrive. Whenever I would get excited as good news was passed on to me about Noah’s condition, Maria frequently warned me, "Don’t jinx it!" We both saw first-hand that there was going to be a step back for every few steps forward and some of the set-backs were quite harsh. So, I never would have made the prediction that we’d be celebrating Noah’s first birthday today, but I always felt like we would be.

The second reason I’ve never wanted to share this part of me is because I don’t want people thinking I’m a nut. You see, some time before Noah was born I read the accounts of a Jedi Master who apprehensively told everyone who subscribed to his daily letters that he felt the presence of angels when he would go visit his mother in a rest home. It was a risky thing to put out there, I thought, as I was a little too skeptical to believe in angels or most things that cannot be scientifically proven. But when the priest came to the hospital on the night Noah was born and baptized him in a simple ceremony using a washcloth that had been moistened with tap water, I felt the same presence that the Jedi Master had described. It were as if God himself had sent one of his best angels down to watch over Noah and that angel was letting me know that he was there!

Of all the time I spend in the hospital with Noah, that is the most vivid memory I have. I reflected upon it many times when Noah’s health had taken a bad turn and feel that it’s the reason I never felt that this one year anniversary of my son’s birth would be anything other than a celebration of triumph.

Incase you didn't see the news story that Fox 8 did on Noah here are the links. The first one is the big story and the second one is the follow up story that includes the kids b-day party.

http://www.myfoxwghp.com/myfox/pages/InsideFox/Detail?contentId=5688531&version=2&locale=EN-US&layoutCode=VSTY&pageId=5.7.1


http://www.myfoxwghp.com/myfox/pages/Home/Detail?contentId=5731869&version=1&locale=EN-US&layoutCode=VSTY&pageId=1.1.1

Our big weekend!

Well this weekend was pretty busy, we had a big birthday party on Sat. and on Sun. we went to the circus. The children really enjoyed both and Tim and are feeling like we could just pass out for a few days. The birthday was a big hit! We had over 50 people there and Fox 8 news was there to do a follow up story on Noah. Autumn ran around and played for hours, filled up on chicken nuggets and cake and still did not pass out until after 10pm. Noah had his ups and downs during the party and he was a litle over whelmed with all of his presents. I think Noah opened about 4 gifts. The rest was either opened by Autumn, other children or they were taken home and opened by me. Both Autumn and Noah got so much stuff that it now takes over my entire breakfast area and some of the dining room. I think we have about 2 loads of new clothes for them as well. We were very blessed to have so many friends and family that came out for their b-day party. We were even blessed to have 2 of Noah's nurses come all the way from Duke just to see Noah. It made the day extra special having them there. The circus was great! Autumn had a good time and she loved seeing all the animals. I think it was a little long and a little loud for her but none the less she had a good time. Noah didn't want us to sit with him he wanted to see the show from a standing position. He danced and was amazed with all the colors and music. We have had a wonderful weekend and I promise when we have a few moments either Tim or myself will post some new pics from this weekend soon. I hope you all have a wonderful week.