Nicholas Surgery ~ April 8, 2009

Oh what a long day this has been. I can go into better detail on how things went now that I'm at the hotel and have some free time to.

Nicholas woke up around 3:00 this morning. He wasn't able to have any formula but was able to have some apple juice. Matt stayed up with him since he went to bed earlier then I did. I got back up around 4:30 and got ready. We left my friend Lola's house around 5:45 am.

Matt's parents arrived at the hospital around 6:15 thinking that's when we had to be there. Nope, we didn't have to be there until 7:00. By time we got there they had already had breakfast. We signed Nicholas in and then headed to the surgery waiting room where they weighed him and such. On their scale he was only 16 lbs 12 oz. Everything else checked out fine.

They took us to a small waiting room where they prepped him some more. Another couple came in with their little boy "Pork Chop" as his older brother (5) was telling us. His name was actually James lol. I don't know what he was in for. Something about his belly but he sure did fit his name lol. I thought he had enough for both Nick and himself lol.

Dr F came in and told us what he planned on doing. He said he went over Nicks heart cath pictures again and didn't think he would have to put the tube in... YAY!!! We talked to a few more people and at 9:00 I had to walk him back. I didn't have as hard of a time handing him over as I did the first time but it was still hard. The nurse was standing there waiting for me to hand him over but I just went brain dead and didn't hand him over. Finally it hit me that this was the moment and he needed to have this done. I think with all the time waiting for this day, it kind of made it easier for me then last time where it was so quick.

We didn't hear anything from Barb until about 11:00. She came out and told us that they had just started opening him up and would update us in about an hour on how he was doing. We went down for lunch and quickly came back up to wait on Barb who finally came around 12:30. This is when she told us that at noon they put him on the bi-pass and were now cutting into the heart. Once again she said she would be back in an hour to tell us how he was doing.

1:30 came and Barb came out with the news that they were done with the heart and were now sewing up the PA. Everything looked great and he was doing wonderfully. She said the next time we see her would be that the surgery was done and we could go see Nick. Now earlier in the day they told us that the surgery should be done around 2 or 3:00. I knew it wouldn't be done at 2 but was thinking more 3:00.

3:30 hit and still no Barb. I looked over at my mother in-law and said... I hope everything is ok, its past 3:00. This is when Barb came out and said that they were done with everything and were sewing up his chest. Dr F should be out to see us around 4:30 to tell us how everything went and by 5:00 we should be able to see Nicholas.

Dr F finally showed up around 5:00. Ok... so this is what they did...

He started off with cutting out the band. Then he went in to patch the small upper hole but ended up that all he had to do was just stitch it. This hole was a bit smaller then a penny. Then he cut a hole into the bottom part of his heart and patched the tunnel from his hole to his artery. Ends up that the hole was a heck of a lot bigger then expected. This whole time they told us it was a nickel size. Ends up that it was as round as a silver dollar and was more oval... 2 inches long by 1 1/4 inches wide. His heart is no bigger then Matt's fist. When I saw that I said... OMG its a LOT bigger then we expected. Dr F agreed! I see now why they were so impressed on how well he has been doing. From this point Dr F doesn't think he will need any more surgeries... YAY!!! but it all depends on how he heals and how scar tissue builds up.

We asked if we could go back and see him (by this time it was around 5:30). Dr F said he would like for us to wait a half hour before going back so the nurses and everyone could work with him. Matt's parents were wanting to get something to eat before leaving and had to leave soon so we asked if we had time to eat and he said that would be great, we could see him when we got back.

We went to 1st floor for dinner and then headed right back up. Matt and I went back first. OMG, he had so many more wires and tubes then he had before. He looked good though. He wasn't puffy or anything. His nurse said that it might happen later on yet but yes he did look good. She told us that they took him off the sleeping meds and would be waking up shortly. I asked her how much longer before he would wake up. We still had to check in the hotel and I wanted to be there when he woke up. I was so afraid that he would wake up with strangers and strange things all around him and get scared. She said it could be an hour or it could be later that night. We told her we had to run to the hotel and would be right back.

Matt's parents decided to stay while we went to the hotel just in case Nick did wake up. I was happy about that. Matt and I quickly went to the hotel, checked in and brought our stuff in. We made it back to the hospital within 45 minutes. When we got back my mother in-law was in the room with Nick. She just felt the need to be there with him. I went back and saw that Nick had been fussing and doing some crying hurt faces... awh... broke my heart. The nurse gave him some pain meds and he fell back to sleep. I stayed with him a little longer and then went with my mother in-law to say good bye to my in-laws. After they left Matt and I both went back in to see Nick. The nurse had put the picture up I made for Nick saying "thinking of you" with pictures of him and the kids. We have a mobile for him but are waiting until he is awake before putting it up and I also brought in his bag full of everything they might need.

We stayed with him for about 10 minutes but every time I would talk, Nick would hear me and start moving and crying. I felt so bad that... it was like I was causing his pain. I told the nurse that we were only going to do short visits but see him every hour or so. If anything was to go on we would be just right down the hall, to come and get us.

We went in for one last visit with Nicholas and then headed back to the hotel, where I'm at now. I just got off the phone with the doctor watching over him tonight and she was watching him to see how he was doing with his breathing tube. They are thinking of slowly lowering the level to slowly ween him off of it and hopefully withing 24 hours he will be able to have it taken out. I told her that I would see him tomorrow morning but I know we will be calling as soon as we get up to see how he did over night.

So that's how things are going for now. He was such a trooper. My strong little man!

I will try to update more tomorrow. Oh... I did get a couple pictures of him tonight that I will post later. I wanted to get a couple pictures a day to see how much he changes through out his stay. Dr F said he hopes to be able to let Nicholas go home either Monday or Tuesday. YAY!!!

Thanks for all the warm wishes and such. I saw all the replies but haven't had a chance to read them yet. I hope to do that tomorrow between visiting Nick.