Surgery. #6

October 14th - Today was the day. Isaac was 6 days old. For 4 days he has been poked and prodded almost on a continual basis. We've had to weave through leads, IV's, cords of all kinds just to be able to hold him. I wanted so badly to hold him like I did for the first 2 days of his life. With nothing attached, nothing to be careful of, nothing to restrict us to his bedside. I felt this was precious time I was losing. Bonding time with my son. But I also knew that he would remember me being there all the time. The only time I really left was when he was asleep. I asked all his nurses to call me as soon as he had woken up so I could make my way back there.. If I wasn't there already. And they always did. They were all so good to us. One of his nurses even drew him a picture of a ladybug and posted it on the plexi glass next to his head. He loved looking at it. I made sure to pack it in our bag to take home so we could have that for his baby book.

Surgery was scheduled for 9am. They told us that around 7am they would prepare to take him to pre-op. So we made sure to get there extra early to spend some time with him before. He was sleeping when we got there so we let him rest. I did hold him before because they told me once they got him up to pre-op he would remain in his transport incubator type thing until they were ready to take him back to the OR. I don't remember much of this morning. I only remember going up to pre-op. We loaded the elevator. Isaac was wide awake and being a squirmy wormy. He was so precious. We got off the elevator and got to our little room.They told us Dr. Acierno, the anesthesiologist, and the rest of the surgical team would be by to see us. We had requested a nurse, Kristin, from the NICU to go to surgery with him. She was there with us the whole time. She was our favorite. Isaac had so many nurses, at least 4 a day, but we LOVED all of them. But Kristin made me feel confident and comfortable with everything that was going on. I trusted her. She was supposed to be on vacation that Friday but she requested to be on the schedule and to work that day so she could take him to surgery. She did this without even telling us. That's how special and kind this lady was. I had asked someone the day we found out he had Hirschsprung's if it was possible to request a certain nurse to go with him to surgery. When I found out we could, I immediately asked Kristin. I felt better because she was there.

I can't even remember what time the surgical team came by.. Probably around 8:30am. Dr. Acierno gave us a run down of how the surgery would go. She also told us that Kristin would be calling us from the OR and updating us as each step was completed. The plan was to do a small incision under his belly button so she could do a biopsy and have the pathologist review the sample right there to check for ganglion cells. The closer the cells were to the end of his large intestine, the better it was. That meant he could have the pull through procedure because he had what was considered "short segment." If that was the case, she would go ahead and do the pull through. She couldn't give us an exact time frame because she really didn't know. If he had a larger area affected, she may need to do a colostomy. Which would make the surgery more complicated. As she finished the anesthesiologist came in and introduced herself, along with a surgical nurse named Shannon. We were pretty quiet and didn't ask that many questions. We really didn't know what to ask. We just wanted it to be over and done with.

I could barely look at Isaac. I felt so bad. I felt like it was my fault. It was the worst feeling in the world. But I just kept telling myself, this HAS to be done. He NEEDS this surgery. After all, I didn't have a choice. Kristin then told us a few things about what to expect after surgery. She told us he would still be on a ventilator and that he would be very out of it. She said he might be twitching or making odd movements. She said as the day went on it would wear off and he would be back to normal. She basically just gave us a run down of what he would look like and what they would be watching for. She told us that after a surgery she would only have one patient and they monitor them minute by minute. She would only have him for the day. That made me feel better. She would be right by him all day and so would we. I heard people coming down towards our room again and I knew it was time for him to go to the OR.

We kissed him and told him we would see him soon. I promised him that he would get to home in a few days but we just had to do this first. I promised I would be by his bedside when he woke up and I would rock him like I always did. It was the hardest thing I've ever had to do. Fear set in. I began to let my mind run in a million different directions. I burst into tears as I watched them wheel him away. He was happy and wiggling all around. I was like how terrible of a mom am I to send him away like that. He didn't even know what was going to happen. I didn't want him to feel scared. I didn't want him to think we weren't there for him. It was so hard... I reminded him that I loved him and I would be waiting for him.

We went up to the surgical waiting area. At that moment I felt really calm. I felt confident. I knew that this was one step closer to bringing our baby home.  We checked in at the front and gave them our number and name. Each patient is given a number and there is a tv screen that you can watch to see what phase they are in during surgery. Also, we had to give our names and number so that when the OR called to update us they could get us on the phone. Dr. Acierno told us it would take her about 30 minutes to get him set up. And then about 30 minutes to do the biopsy. So we wouldn't hear anything for about an hour. I just kept thinking an hour? An hour? What am I going to do for ONE long HOUR? Ug I hate having a time put on something. That meant clock watching minute by minute for an hour.

Every time the phone rang up at the reception desk, I would jump. My heart would race, my face would feel hot, I felt faint. When the phone rang and it was for us, I jumped up so fast. I didn't know if we would be getting good news or bad news. When I got on the phone Kristin told us that they had done the biopsy and on the first sample there were "lots of ganglion cells." That meant he only had a very small area affected. I was so relieved. She said now they were going to proceed with the pull through. She said he was doing very well. I let out a sigh of relief and hung up. This was the best possible outcome we could have asked for. Now we had to wait for the next call. I figured it would be like at least 2 hours. Blah.. Time.

About 40 minutes later the phone rang for us. Kristin told us that they were done and the surgery went very well. She said Isaac was doing great and that they were taking him back to the NICU to recover and that Dr. Acierno would be up to see us and tell us how everything went. He was in surgery for under 2 hours. I figured it would have taken a lot longer. I was so relieved that it was finally over. I was so eager to hear from the doctor and to get down to see Isaac.

When we met Dr. Acierno in the post op conference room she told us that she had removed about 5cm. She said he had such a minimal area affected that she didn't expect any complications. She said that it was a text book case and ideal surgery. She expected him to do very well. Finally I could breathe again. The worst part of our journey was over.

As we got to Isaac's bedside I felt an instant rush of relief. I was no longer worried or scared. I was so happy, like a huge weight was lifted off my shoulders. When we walked in he was laying on his back.. He was still on a ventilator. And that was hard seeing him like that. But he didn't look bad at all.. I thought he would look horrible. Thankfully, he didn't. I spoke softly to him. We were told to not speak loudly or to talk too much to him because the anesthesia and surgery was overwhelming for him. We actually didn't stay that long because they told us to let him recover and to let him sleep as much as he could. We didn't want anything to hinder his recovery. I asked Kristin how he was doing and if he was stable. She told me he was doing excellent and that they didn't expect any issues.  So we kissed him, told him we loved him, and stayed for about 20 minutes just so he knew we were there for him. I felt so much better now. It was a total turn around. The past 4 days seemed like weeks. All the hours ran together. I was hoping that we would get some normalcy back. This was such a traumatic event that we had not planned for. But who ever does, right? As we walked out of the NICU I imagined what it would be like to walk out of these same doors with Isaac in our arms and for us to head home. That didn't see like a dream anymore.. It was becoming a reality.