Here is where our story begins for a second time. The day before surgery we were supposed to go to the hospital for the pre-operative workup. There was so much to do! Chris had been fielding the calls so I didn't really know what we were doing. We packed up the baby and drove over to begin. At this point we were walking zombies. We were both still working full time, we had a 2 year old at home that needed us, and our emotions were overwhelming. Needless to say we weren't sleeping either. We walked through the front door of the hospital and just kind of stood there staring off into space. It was a surreal feeling to see these little kids being pulled in red wagons, watching families walking around, and see hospital personnel going about their business. We were locked in OUR terrifying world. Then all of a sudden this ray of sunshine literally appeared out of nowhere. A woman walked up to us and introduced herself as our welcome coordinator. "Hi! I'm Peg!. She began right away, talking, explaining where we were going and what the next step would be. There were so many tests to be done and I kept thinking "what if we miss something and that delays his surgery?" We didn't have to worry though because she took us to each individual place in the hospital for the tests, she made sure we stopped to eat lunch, and when Noah began to cry because he was hungry she stopped and left to get him some formula (we had been so focused on getting in the door that we forgot our diaper bag in the car). She took us on a tour of the floors where Noah would be staying. She introduced us to the surgical team and showed us the family rooms. She offered to set us up with someplace to sleep and even checked with my Mom to see if SHE needed a place to stay. She took care of all of the little details....details that were overwhelming, but once things were done we actually settled down a little bit. And at the end of the day Peg said her goodbyes and we went to the hotel feeling that at least we got through the first day. Little did we know that wasn't the end.
The morning of surgery we were up at 3:00 am to give Noah his last bottle of the day. We got him washed up with the special soap, changed clothes, and headed over for a 6:30 am check in with pre-op. We got to the waiting room at 7:00 and tried very hard to keep occupied with any other thought and action that we could. We were called back for another soap wash, vital signs, and a time out with the anesthesiologist and surgical nurses to ensure all was ready. Then we waited again. I had been holding Noah but gave him to Chris to hold until it was time. I whispered to him, told him I loved him, and he gave me the most trusting look, like "it's okay mommy." The team came out and said they were ready to take Noah at about 9:00. That was the moment where for a brief minute, my life ceased to exist. I was underwater and watching someone else's life unfold. I just bent over to give my baby kisses on his forehead, without really comprehending anything. It was like I shut off. All I could say was "ok, ok," The nurse picked him up and started to turn and I remember her very briefly hesitating, like she wanted to say something reassuring, but couldn't. I just put my hands over my face and broke down. Chris knelt in front of me and could only hold on. We finally calmed down, gathered the rest of our family, and went out to begin our vigil. When they were settled with a spot in the waiting room, Chris and I went downstairs to get a bite of breakfast.
As we were sitting there, silent, contemplating, trying not to
fall apart, that sunshine showed up again. I felt a bit of shock.
I thought her part was over. She asked how we were, did we
need anything . I felt mildly numb and could only shake my head.
Later that day she showed up again, and later again. When the
team came to tell us that Noah was okay and was in the CICU it
was like a tiny break in the dam we had walled up around ourselves.
We got to see him and touch him and even though there were
monitors and tubes hooked up all over, he was there, and he was so
Noah had a few complications but they were quickly taken care of. We were able to spend chunks of time with him in the CICU and the following day they were able to get him off of his ventilator. Pretty soon he was off some of his medications. He had received both of the units of blood that Chris and I had predonated and was doing well absorbing that. Each time we stepped out and came back in, there was a piece of equipment gone. The moment he started to wake up was one of the most breathtaking sights I've gotten to witness. It was like seeing him born all over again . He was so swollen but the first thing he wanted was to eat! He tried so hard to purse his little lips around that bottle and after taking 4 ounces of glucose water I felt like we had run a marathon together. It was a magical feeling and I don't know how else to describe it. That dam started breaking more.
Two days after surgery Noah was able to move to the stepdown unit. We had our little area to ourselves with his tiny crib and a few monitors. We started to learn how to pick him up without hurting his incision, how to hold him, to feed him and burp him, how to change a diaper. We always felt that we missed out on his newborn days because it was all about his sickness, so we really DID have an 11 week old newborn again. That afternoon, Peg showed up again. Now I really WAS mildly perplexed. Why did she keep coming? At one point she gave us coupons for the coffee cart which was a godsend. I am a coffee fanatic and being able to go down for a latte was like getting candy on Christmas mornng. You don't realize what all you take for granted in life. Another night she gave us coupons to order Chinese food. She told us to leave Noah's room, get some air, take our parents downstairs and have some food and conversation. Just being away for those 30 minutes was nerve wracking yet very much needed. Chris and I took turns staying the night with Noah - one of us slept on a cot in his room while the other drove 5 minutes to stay at a hotel. I remember one night it was about 2 in the morning and I had gotten up to fix a bottle. As I was coming back one of the nurses asked how I was doing. I told him we were doing well and couldn't complain since our child was doing so well while others were not. He stopped dead in his tracks and said to me "do NOT downplay everything that you two have gone through. Everyone goes through the emotions, and everyone knows the potential outcomes. This is hard on the kids, but it's hard on the parents too and you have to acknowledge that. The families are important too." That was a very profound statement and at first I felt guilty but then realized he was right. We kept finding that out during the next several days. I've never seen so many people come by to offer their resources. Peg came by several times a day. We began to learn the story of what the Welcome Program was. It was just what we had been seeing. It was a program set up to help the families. It was to offer support, guidance, and help with living. We found out it wasn't just the coffee and food coupons. The program had put families up in hotels if they came from out of town. They had been able to fly a mom in from out of state when her baby had to come to Chidlren's via Flight for Life and she was left behind. There were so many stories. We got to thinking about our emotions and the toll they had taken, and WE lived in the area. We had family and friend support here. How would it feel to come to a strange city with strange people AND have a sick child? This program provided a PERSONAL TOUCH. It was a person who cared, who WANTED to know us, our baby, and our family. Peg wasn't just a worker assigned to us. She became our anchor, someone we knew we could contact 24/7 for anything and she'd be there. She became, to us, what the Welcome Program stood for. We knew how grateful we felt towards the support we received and the more we learned about the program, the more we wanted to know that it would continue. But the program is mostly funded through donations made by patient families and outside sources. Now what?
Visit the 5280 Magazine website as follows to read a story about our family's journey.
Visit the 9 News site to see a feature story from 2008 (video not enabled at this time.)