Oh the tubes...

Connor,

Hey there little guy. I know its not the end of the night yet but I wanted to write you a little note and fill you in on all the big events of the day so far. I have a feeling that the next forty-eight hours are going to be really tough on your mommy and daddy, and probably even more difficult for you, so I wanted to make sure and write you something while there are no alarms going off and my brain is still functioning at a decent capacity. We shall see if the latter is actually true as we get through this note but I wouldn't put too much money on it if I were a betting man. Either way I'll do my best to remember everything.

We started this morning bright and early, very early, with you wide awake and kicking all over the place. It wasn't mad kicking either, it was just kicking, kind of like you were excited or anxious. I don't know if there is any possibility that you could have known what was going on but you sure acted like it. You were wide awake and wiggling the entire time mommy and daddy were in here with you, right up until the anesthesia people showed up to get you ready for your field trip to the OR. They came in and talked with mommy and daddy for quite a while about what was going to happen and how everything would work with your medicines and your tubes. Lucky for us you are what the doctors call "a veteran" these days and we knew what to expect coming into this morning.

After they had you all changed up and ready to go mobile they wheeled you down to the elevator and your entire entourage, mommy and daddy included, took a trip down to the third floor. We walked down the hall with you and kissed you goodbye so you could go get your surgeries out of the way and take two more steps toward getting better. Mommy and I sat down in the waiting room with Grandma and set up camp for what we expected to be a long day. We had some coffee and some hot chocolate and Grandma got all of her Christmas cards written while mommy and I tried to pass the time and keep our minds as busy as possible without worrying about you. That is no easy task mind you.

Your nose repair was first on the list this morning and we expected that to take a long time because of how much they had to do last time and how long we have had to put this one off with your fevers and what not. Dr. A (I cannot even begin to attempt the spelling of his name although I think I can finally say it correctly) was scheduled to do this one, just like the last one, and that made mommy and daddy feel a lot better. He is a really nice doctor and seemed to take extra special care of you last time.

The receptionist called out to let us know that Dr. A had started on your nose and before we knew it she was calling us again to tell us he was finished. At first we were worried that something was wrong since it had been such a short amount of time but we were relieved to find out that it was just because there wasn't that much to do and your nose was way better than they thought it would be. They only had to work with soft tissue, no bone this time, and they didn't even have to sew in the the stint (that tube in your nose) like they did last time. The put a temporary stint in there but said it will come out in a few days and shouldn't have to go back in. How great is that?!

Then it was on to your belly and the work they had to get done down there. This time it was Dr. B doing your surgery (I swear I really just have no idea how to spell these names and I'm not trying to be cute here) and he is very friendly and spent a long time talking to daddy last week when we thought you would have your surgery last Friday. His job was to go in and tie a little piece of your stomach around your esophagus so that you wouldn't have any more reflux when we feed you. Then, after that was finished, he was planning to go put a little tube into your stomach so that feeding would be easier and getting all those medicines in your tummy wouldn't require so much to go down your throat.

But of course you had your own plans. As it turns out your stomach hasn't grown much in the last eleven and a half weeks and Dr. B couldn't quite tie that piece of your stomach like he wanted. He was able to do something close to his original plan and hopefully that will help with the reflux too. Also, because your stomach is so tiny right now, it was hard for him to get that tube in there and you made him work extra hard to get it where he wanted it. Then, as if that wasn't enough worry for the surgery team, you decided you were going to "ooze", as Dr. B put it, a lot for such a little guy. You weren't gushing blood or anything but you were losing blood at a pretty quick rate and they had a hard time making it stop.They finally got it under control but they did have to spend more than double the amount of time on your surgery that they were planning.

After they were all finished Dr. B came and talked to us and told us about what happened with your stomach and all the oozing and that he was a bit worried about you. He said he thought you would be fine but that we would need to watch you super close tonight and tomorrow to make sure that things kept moving in the right direction with your belly. He has even stopped by your room since then to talk to the nurses about what to watch for and who to call in case something funny comes up and your belly doesn't cooperate. We are all on watch though, so don't you worry.

Since you got back to your room things have been up and down quite a bit. You go from quiet and sleeping to awake and freaking out. That probably has to do with the tubes. Oh the tubes, not more tubes, I know how you hate the tubes. But they did have to put some in, more than we thought. You got your belly tube for feeding, a foley catheter to help you pee during surgery, a brand new IV in your hand for your extra medicines, and that breathing tube you have been fighting for the last four hours. So you went in with just the one tube, your PICC line, and you came back with five total, the big one breathing for you.

I know you hate that one and to be completely honest it broke mommy and daddy's hearts to see that in your mouth again. We can tell you can't stand it and we can't either because it feels so much like a step backwards to three or four weeks ago. We know it comes out in a few days but it is still so hard to see it, especially seeing how much you hate it and how much you are fighting against it to breathe on your own. You have been doing such a good job of that lately that you don't want any help. I know how that feels, your daddy is just the same way with most things in his life. "If I can do it on my own then let me!" Here is another lesson from Connor, sometimes we need to let people (or in this case a tube) help us if the situation calls for it. You are a pretty smart character.

For now we have you quiet and calm again and we are hoping to keep you that way but my guess is that won't last since you seem so anxious to be moving around and fighting. We will do our best to keep you comfortable and happy though, you just do your best to keep getting better. Mommy and daddy are SOOOOOOO proud of you Connor, you are doing so well and dealing with so much and we couldn't ask for a better little boy than we have right here in front of us. Keep that in mind as you take your little naps, and think about all the time we are going to spend cuddling when those dreaded tubes are gone again.

Mommy and daddy love you Connor.

- Daddy