Shawn Raymond Stockwell is born!
Having a very uneventful pregnancy, I did not anticipate any problems with our son, we were so happy to see him, and so proud to have a son. At first, everything was fine, but then he stopped nursing, wouldn't open his eyes or even wake up. When I voiced my concerns, I was told I was paranoid, I needed to relax. A lactation consultant then visited, because he wasn't nursing, I must of been doing something wrong, they thought. Her name was Andrea, and she listened as I told her that Shawn hadn't eaten in almost 8 hours. She then took him into the nursery and put a small feeding tube up his nose that goes down to his stomach and poured formula through. He began to vomit, and she checked his oxygen saturation levels, she then rushed him to the NICU. I wouldn't hold my son without iv's, tubes, etc. for almost a month.
In the NICU at the hospital Shawn was born, he was stabalized and prepared for transport to Providence Hospital, with a much more advanced NICU. The hospitals are about 2 blocks from eachother, but it took HOURS to prepare him for that very short ambulance ride.
George met us at Providence, where we met Dr. Scott A. Wellmann, pediatric cardiologist, a stranger at that time, would became such an important role in our lives later on. He quietly did an echo-cardiogram, then led George and I to a small conference room where we heard the words, Hypoplastic Left Heart Syndrome for the first time.
Those 3 Famous Choices:
Scott told us that Shawn had a heart defect and was very critical. He then kept talking, but I heard nothing. It hadn't even began to sink in that Shawn had a heart defect when we were given the choices that are so familiar to families with Hypoplastic Left Heart children. 1) Transplant - this really wasn't an option for us, since Shawn was so critical, having gone for days without being diagnosed or treated 2)Compassionate choice: medications to make Shawn comfortable and allow him to pass away 3) A series of heart surgeries to take place over a number of years, the first, named the NORWOOD procedure, would have to be done immediately. The only choice for us though, was the surgery. Having NO knowledge of congenital heart defects, etc. I just assumed the surgery would be performed there at the hospital. We were told to go pack some things, they would begin the process of transporting Shawn to Portland, Oregon.
In shock, George and I went and threw some things together and went back to Providence. On the way back into the hospital, I passed a couple just leaving the hospital with their new baby. The father was so carefully carrying his new baby, so tiny, in her new car seat. The mom was in a wheelchair with bouqets of flowers and balloons that read "Congratulations" I wanted to grab them by the shoulders and ask them if they had any idea how lucky they were. I was so jealous of them.
Portland, Oregon - Here we come.
The hosptial arranged for us to have an empty patient room on the third floor so we wouldn't have to leave the hospital. Very early in the morning, I went down to the NICU to sit beside Shawn. Dr. Scott was sitting very close by, as he had been most of the night. The nurse taking care of Shawn suggested that we take pictures of his chest, we may never see it without scars again.
That afternoon, George's sister, Tanya gave us a ride to the hangar where Shawn's private jet was waiting. He arrived in an ambulance with his 2 flight nurses.
Arriving in Portland, there was another ambulance waiting to take us to Legacy Emanuel Hospital. We waited in a small waiting room for a few hours while Shawn was 'settled in'. Dr. Dave MeIrvin, pediatric cardiologist then came out to meet us, and take us to another small conference room,
The walls close in......
Dr. McIrvin, who introduced himself as Dave, told us that Shawn's tricuspid valve had torn, there was significant regurgitation, he was in renal failure and much too sick for surgery. He then told us we had the choice of keeping him in Portland or transporting him home to Anchorage. We said we wanted to take him home to die. He left, telling us that it would be just a little while more before we could go back and see him. George and I said nothing. I felt as if the walls were closing in. I felt hopeless, scared, sad, angry, and devastated. I began to pray, begging God to bring Shawn through this, I did some serious negotiating with God in that conference room.
We were then scrubbed and lead through the NICU to Shawn's area. 99% of the babies in the NICU are there because they are premature. so walking through, looking at these TINY babies, when we got to Shawn at 7 lbs 3.4 oz, he looked HUGE. I wasn't prepared to see the amount of medical equipment surrounding Shawn. Reality was sinking in, we were going to lose our son. How would I ever survive the death of my son?
That night in the NICU
We had arranged to stay in the Ronald McDonald House that is right next to the hosptial, but a room would not be available until the next day. The staff set up a corner for George and I right in the NICU so that we wouldn't have to be far from Shawn. At some point, I fell asleep. I was so exhaused and in so much pain (I had just had a baby after all). George woke me up with a card and a pen and told me that I needed to write everything down, so that we would never forget a second of our son's life. That card remains in Shawn's baby book. So around 2 am, on a cot in the NICU, this is what I wrote in that card: Our Sweet Baby Boy, Shawn Raymond, At 3:21 on Monday, August 10, you entered our lives. We fell completely, head over heels in love with you the second that we saw you. You were so handsome, even with all that white stuff on you :) We hardly slept that night, spending that time holding you and stareing at you in awe.
