We just couldn't believe this perfect little man was all ours. Our world was suddenly so much better because you were in it. Then our wonderful world came crashing down, when you were transported to Providence Hospital NICU, and we found out that you were sick. Your daddy and I were sitting very close to you when we found out that our very perfect and handsome some had a not-so-perfect heart.
My card stopped there, the defect and complications were too much for me to comprehend at that time. I couldn't of put it into words if I tried.
Waiting is the hardest part
We were told that it would take a few days, through the weekend, to arrange a flight home for Shawn. We got a room at the Ronald McDonald house, but didn't sleep, and hardly ate. We spent a lot of time in the NICU. We talked of his funeral, where he would be buried and even went shopping for an outfit to bury him in. We were both hurting. We began preparing for the worst, still silently hoping for the best. Miracles happen, right?
Miracles do happen
Monday morning, August 17, the day we were to fly Shawn home. We walked silently to the hospital, knowing it would be the last time. George went to the cafeteria for coffee, he couldn't bring himself to go upstairs to witness the preparations. I went to Shawn's side and asked the nurse to keep every blanket, tube, tape anything that touched my son, I wanted it all. I then noticed a post-it on Shawn's file, that read, "Ask about the EKG" so I asked the nurse, "What about the EKG?" She said, "Oh, that's just a pre-operative test". I was sure she had confused Shawn's file for another child, so I asked, "Pre-operative for WHO?" She then stopped and waved down Dr. Dave who was across the NICU, who came over to tell me that Shawn's liver functions had improved, he had stabalized considerably and the surgeons were willing to operate if we wanted to do so. I gently touched Shawn's hand and said, "Buddy, I need to go tell your daddy" I raced downstairs and found George in the long hallway leading to the cafeteria. I ran to him and said,"We're not going home, they want to operate". A look came over George that I have never seen, and have yet to see since. It was as if he had been holding his breath for days, and finally exhaled. He bowed his head and cried tears of joy. We went back to the NICU and waited to meet with the surgeons.
Cardio-thorasic surgeon, Hagob Hovaguiman - we just call him Hagob
We met with Hagob in the waiting room. He was extremely positive and George and I were still thrilled about Shawn having major open heart surgery - crazy things you get happy about in extreme situations. He explained it very simply, he goes in, patches him up, we take him home, he'll grow up and have babies. Hagob became my new best friend. Dr. Dave, always was and always has been realisitc, he doesn't sugar coat anything, but Hagob was the opposite. We had the two extremes. We arranged to have him dedicated by the clergy in the hospital, and daddy was able to hold him. It is such a big ordeal to move Shawn into our laps, so I was able to hold him the day before, and it was daddy's turn. We were in great moods, it was a good night. Surgery was scheduled for first thing in the morning. We went back to the Mickey D house (as we called it) and set the clock for 5 am. We finally slept.
The Norwood Procedure
We went to the NICU to see Shawn before surgery. For the first time in a week, he opened his eyes and looked at us. We told him how much we loved him and we would see him soon. The surgery was very long, Lisa, Dr. Dave's nurse would meet us in the Family Waiting room to give us updates, and they weren't good and got worse each time she came in. The surgery went ok, they were not able to get Shawn off bypass. As complicated as it was, the doctors, surgeons and nurses wouldn't quit. They would take Shawn off bypass, then put him back on, they did this at least three times. While his surgery was taking place, I went down to the NICU on the 2nd floor to gather all the breast milk I had pumped and froze to take upstairs to the PICU on the 3rd floor. George stayed in the waiting room for any news.
"Wow, that baby must be REALLY sick" I thought
Walking down the hallway, the elevators opened and just like out of a movie, this "crib" surrounded by at least 10 nurses and doctors came flying out. Orders were being shouted, medical equipment was being raced towards them, the men and women were working like crazy on this child. I thought, "Wow, that poor baby must be REALLY sick, I wonder what happened" As I moved aside so that I wouldn't get run over, the faces under the masks looked familiar, and there in the crib was MY baby. My legs went weak and I raced to the family room to tell George I had seen Shawn. I again felt hopeless and sick. I sat in the chair, put my head down and lost it, really lost it. George tried to comfort me and I then lost it on him, misery loves company after all. Hours later, we were able to see him. The nurses said, "well, he barely made it upstairs, but he's still hanging on." We had been prepared before hand that after surgery Shawn's chest cavity would be left open, because of swelling, but it is closed within a week. Although we had seen pictures, it's a whole different story when it's YOUR baby on full life support with his chest wide open. We sat vigil beside him, knowing full well that he was barely holding on. If faith can move a mountain, can it will your child to live? We were going to find out.
Legacy Emanuel Hospital - Pediatric Intensive Care Unit, Our Home Away from Home
Shawn's sternum was closed four days later, but that was the only advancement that he made. He remained extremely critical and was not impoving. Still unaware of what the numbers on the monitor meant, I only paid attention to his heart rate. I knew that if his heart rate went up, he was irritated or in pain. So, if those numbers went up, I would turn off the tv, or stop talking to him and ask his nurse if he was scheduled for pain meds. During this time, we met alot of other parents staying at the Mickey D house. The first couple lost their son right before Shawn had his surgery. The next family was victims of a huge house fire featured on the news a number of time. The mom had gathered her 3 children and got them all out of the house safely, but when the family dog ran back into the house, the 3 kids ran after it. The two older died, and the third was found under his sister. The surviving sibling was in the PICU next to Shawn. There was a large sign outside his door that read, "Do NOT mention patients siblings" How tragic and sad. The children's grandmother from Texas came to Portland to be with the family.
