While in the maternity ward staring at my beautiful baby boy wrapped up in his blanket and breathing peacefully a Dr and nurse came in to look at Reid. The Dr. informed me that they sent pictures of his anus to a specialist in Santa Clara because he may require surgery, and that this surgery could be right away. Of course not I thought, that wouldn't happen to my baby. It will be fine. About 15 minutes later as I tried to nurse Reid again the Dr. returned and said that the specialist had contacted her and that she wanted to see Reid herself… in Santa Clara. Starting at this point things became blurry. I think I have mentally blocked out a lot of details but I do remember that the Dr. told me Reid needed to be observed in the NICU in Modesto until the ambulance came to transport him. They needed to start an IV on him and were taking him immediately. I was so numb I just agreed without really saying goodbye to him. I looked at my husband and I could see the color drain from his face and fear just completely wash over him. I told him to go to the NICU and that as soon as I could (remember I gave birth 3.5 hours ago!) I would go to the NICU. So off they went and the nurse tried to help me get up and go to the bathroom to clean myself up before heading to the NICU. I asked if I would be able to join Reid on the ambulance ride and they said no. They said that if I wanted to go with him to Santa Clara I had to be discharged from Modesto and then just go to Santa Clara as a parent with no further care after my delivery. The Dr's agreed that it would be okay since it was my second child and I knew what to expect. I had to start taking medication that would make me contract to help with bleeding but I didn't care. As long as I could be with Reid as soon as possible. I made my way down to the NICU in Modesto and Michael met me at the door and said that Reid's bottom looked really weird and that they think he has 2 anus's. They were having a lot of trouble getting an IV and were trying for the 4th time as I walked in and heard him screaming. At this point I still had not seen what Reid's entire body and anomalies looked like, I didn't even know everything that was going on with him. It wasn't that they weren't telling me, but they were too busy caring for Reid. They finally got an IV in his umbilical line and he calmed down. I was so tired at this point and all we were doing was waiting for the ambulance so I decided to go back to my room pump and try to close my eyes. I asked Michael to stay with Reid, I didn't want him alone. He agreed without any problem and kissed me goodbye. I was able to pump and close my eyes for about 15 minutes before Michael came back up and said that the ambulance was there ready to take Reid away. This was so hard. As I sit here and type this tears are still welting up in my eyes remembering how it felt to have complete strangers take my new baby away from me. My new baby that I had yet to bond a lot with, he barely had seen me in between sleeps. But I knew that this is what was best for him, he needed this. Something was wrong with him that I couldn't fix so he needed to go where he could be fixed. I hated this. I hated this so much. As they wheeled him away I broke down. Michael and I just cried in each other's arms, a cry that crushes your whole body into pudding. As soon as we could pick ourselves up off the bed and I was able to walk around we left the hospital. We didn't even stop at home we just went straight to Santa Clara. I slept part of the ride there which I needed after delivering a large baby just hours before.
When we got to Santa Clara I remember walking into the ER (late at night it was the only way to get into the hospital) and shaking. I was uncontrollably shaking and I thought maybe I was loosing a lot of blood. I asked them if I could have a wheel chair and they wheeled me to the elevator and we headed up to the 3rd floor looking for the NICU. It was a little after midnight at this point and there wasn't a nurse to let us in the NICU. We had no idea what the process was of getting into the NICU so we just started banging on doors when we saw a person walk by. Eventually someone let us in and they were so confused. I just kept saying I want to see my son, he was brought here from Modesto just a little while ago. It was like I was speaking another language and that someone had finally found me who spoke my language. I remember the Dr. from that first night. He was the first one to try and figure things out for us. He was young, looked like he had just graduated. He ushered us through the halls and into the pod where Reid was. The nurses were still wiring him up to all the monitors and they said he did good on the ride over. We sat down near him and I was still freezing cold. We stayed for about 45 minutes and just stared at him and watched the nurses poke and prod at him. This was so novel to us. I didn't know anyone close to me who had a child in the NICU. I had no idea what this was like.
At this point we didn't know what was going to happen 10 minutes from then and because of this we didn't know where we were going to sleep or if we were going to sleep. The Dr. informed us that the NICU had a parent's room in suite that was used in emergency situations and for parents to have one night with their NICU child before being allowed to go home and that we were going to be able to stay there. I was so thankful. I was exhausted. We said goodnight to Reid and walked around the corner of the NICU to our bunker. It was a tiny room with a bathroom and a dresser. There was a TV… that had no working channels. While we were thankful to have a place to put my hospital bags that were suppose to be used in Modesto's maternity ward we didn't love it. The Dr. that first night told us that rounds were every morning at 8am and that parents were encouraged to be involved in rounds. So at 8am we were right there by Reid's side waiting to see what "rounds" even meant. I was so concerned with how Reid's night went since I wasn't there. That was suppose to be my job. I was suppose to be up all night trying to nurse a newborn and change meconium diapers. I wanted that. I didn't want to be in our bunker room pumping every 3 hours. I wanted to be snuggling my baby.
Rounds at this point didn't mean much because the surgeon hadn't evaluated him yet. She was going to be coming by sometime that afternoon depending on other urgent cases. I remember during that first morning shift when we had no idea of how to act or what to do in the NICU we had the sweetest nurse we could have asked for. I could tell immediately that she cared for my child and I needed that. I needed to know that when I wasn't there someone else was that could comfort him if needed. Her name was Lillianna. She was a tiny little thing who looked 18 but we later found out she was 35! As the day went on and Reid was evaluated by numerous people no one had told us anything about him yet. They didn't know. It was a Friday and any images that were taken of him probably wouldn't be seen for a few days. ….. We would be here for a few days???
That afternoon Michael's Uncle Tim and his partner Bryan took us out to lunch. I am so grateful to them for everything they have done for us and especially Michael. Having that small comic relief during this chaotic time was exactly what he (and I) needed. When we got back from lunch we learned that we had missed the surgeon and that she wanted to talk to us the next day about Reid's surgery and when it would occur.
This was Friday afternoon. After almost 24 hours I was finally able to hold my baby. I was terrified. He had an umbilical IV, 3 wires attached to his chest to measure his oxygen, heart rate, and breathes taken. He had another cord coming from his foot and one in his mouth that went to his stomach and sucked out any stomach acid. I couldn't really tell what he looked like because of the tape and wires but I knew I loved holding him. I didn't want to let go of him.
But unfortunately we learned some rules about the NICU from the social worker and we weren't allowed to be there during rounds and we were encouraged to get off the hospital campus and try to relax. So during shift change we went on a tour of a home that was in the parking lot called the JW House. We were hoping to be able to stay at this house and leave the bunker. It was similar to a Ronald McDonald home except amazingly beautiful. To be completely honest I don't remember the tour of the home. I don't remember meeting the house manager April, I don't remember looking at the rooms, I don't remember being wheeled over there. The next thing I remember from Reid's NICU stay was meeting his surgeon Friday evening. Dr. Kerry Sullivan. She was Reid's angel sent to help all of us. She sat down with us and explained that Reid was a very complicated little boy. She said she wasn't quite sure of everything that was different about Reid and that she wanted to explore him a little with some CT scans/MRI's/and exploratory surgery. She showed us on Reid everything she was talking about. This was it. This was the first time I was going to see these anomalies that Reid had. I saw all of it. I saw that Reid had 2 anus's. I saw that one of his anus's was an imperforated anus. I saw that he had a large purple birth mark (hemangioma) that covered his butt and back and went down his leg. I just looking. I kept looking at this baby boy and didn't understand why something was wrong with him. Why him? Why my baby? Why me? Why was this happening. I remember Dr. Sullivan was saying that he would need surgery tomorrow but she didn't know what time until the next day depending on emergency surgeries (we later found out that Dr. Sullivan is a crazy busy person) were. I informed my parents and they said they wanted to come tomorrow morning.
The next morning as I laid in our bunker I heard a knock on the door and saw my perfect little toddler Parker. It wasn't until then that I realized how much I missed him! I missed his smile and it helped me so much. Just as they showed up the nurses called and said Dr. Sullivan was with Reid and wanted to talk with us. So Michael and I hurried over there and she informed us that Reid was going into surgery now. They kept talking and talking and I kept nodding but inside I was just looking at my baby and still asking why. This wasn't fair. I didn't want him to have surgery. It was scary for a 2 day old to have surgery. They had to find an anesthesiologist that would agree to do the surgery on such a young baby which was also scary. They were getting ready to walk away with Reid and Michael asked if we could have a moment alone with him. We leaned over his giraffe machine where he laid and "hugged" his machine. Michael said I think we should say a prayer. He asked God to be with Reid and to protect him and to stay with him whenever we couldn't be with him. I felt better. I am not a super religious person, but just hearing Michael ask God for this made me feel like I was giving him the control. I didn't need to hold it together anymore because it was in God's hands. He would take care of my son. We stood up and our favorite nurse told us she would pray for Reid and I lost it. Someone I barely knew for 1 day was taking the time out of her day and pray for my child. We cleaned ourselves up and left the NICU back to our bunker.
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