We learned to parent this little bundle from a hospital bed; mourned for the 'typical' boy he would not be, and learned to love the boy that he was.
For this child I have prayed
My husband, Matt, and I tried for what seemed like a long time to have a baby. We had two early losses (Brecken and Rory), which were devastating, so when Sam came along we named him Samuel Joseph. Samuel means “for this child I have prayed” and we had. My pregnancy with Sam was pretty rough. I had low amniotic fluid throughout my pregnancy and my test was elevated which put my doctors on alert. I had a significant number of sonograms and the doctor couldn’t quite put his finger on what was wrong. He finally sent me for a fetal echocardiogram with the ominous statement that he couldn’t find anything wrong, but the hairs on the back of his neck were standing on end. Upon fetal echo, they discovered a slight pulmonary stenosis and couldn’t see the aortic arch, so we would need to wait for birth for more answers. We waited through test after test, month after month, always waiting for the other shoe to drop. And then it finally did.
In August, I was getting extra tests because I’d been exposed to some diseases that can cause fetal problems and Sam already had a heart condition. He wasn’t growing and my doctor admitted me. The next morning she came in to tell me they wanted to do genetic testing and didn’t really leave me with any other options. So we did and, again, we waited. On the night I was to be induced, my doctor walked in with the genetic counselor and told me that Sam had 18q Deletion Syndrome. Now that we knew what was going on, she wanted to wait to let me go into labor naturally, but I needed to see my baby and I told her no. We induced that night (a Thursday) and he was born on Saturday morning. He wasn’t breathing. They whisked him away and intubated him. I didn’t see him for the first time until about 5 hours later in the NICU. We were met by the geneticist from the Waisman Center and the cardiologist. Sam had a significant heart problem and they wanted to move him to UW hospital to be close to cardio surgery. They sent the CHEETAH team to move him. If you’ve never seen it, it is quite shocking to see your itty bitty baby put into what looks like a giant coffin and taken away from you. I was stuck at SSM hospital at least overnight. My husband went to UW to settle Sam in and then came back to be with me.
Two and a half months of bittersweet memories
The next day, we had our steak dinner, which we cried through, and I talked to my doctor. They released me to go be with my son. It was heartbreaking to leave the hospital without my baby. You always assume you will carry your baby with you out of the hospital.
This was how we began two and a half months of bittersweet memories. Each day we were met by anywhere from 10-20 people for rounds. Doctors, nurses, respiratory therapists, students, and the list went on and on. They crowded around his bed and threw out medical jargon and asked so many personal questions. We did our best to answer them all. About a week in (on my due date), my husband went to move us into our new home and the neurologist came looking for us. She wanted to wait and talk with both my husband and I and waited hours past her shift to do so. I knew something else was wrong. It turned out that Sam had had strokes at birth. She showed us the image of his little brain and I knew enough to know that was not what a “normal” brain looked like. She had tears in her eyes, too.
We spent weeks with blood transfusions and surgeries. He had a heart procedure, they placed a temporary shunt for hydrocephalus, and we tried to take him off the vent twice. He almost died twice. We received a call one early morning that they’d almost lost him, but we came in we found him wearing his first clothes, a pair of blue socks that our night nurse had put on him. That’s when I began to hope that we would keep him. We ended up having to place a trach and a g-tube and then learned to care for it so that we could take him home. We learned to parent this little bundle from next to a hospital bed. We read to him, we held him, we bathed him. We mourned for the little boy that would never be “typical” and might never sit on Santa’s lap (too dangerous for a baby with a trach…too many germs). We learned to love the boy he was; the little baby who set off his vent alarm to get you to come hold his hand, the boy who was enamored with the bird mobile the nurse had brought in, our baby Sammy. We got ready to take him home. We were two and a half weeks away from doing so, when he needed his final surgery to place a permanent shunt. It would only take about an hour. My husband went to work. My aunt came to sit with me.
He'd had enough
About two hours in, we received a call to come down to surgery. My husband came back to the hospital. Things weren’t going well. When the doctor went to place the shunt, he found blood in his brain and they were having trouble keeping his heart going. They called in cardiology and another anesthesiology team to assist. They had us gown up and go in to see him. There were so many people in the room. We recited his favorite book “We’re Going on a Bear Hunt” and told him to keep fighting and we loved him. We went out to wait. That evening the doctor came in to the waiting room. He had tears behind his eyes. They’d tried everything. They had one last ditch effort and that would be to take the top of his skull off to get the blood out quickly. My husband and I talked. Our baby had been through so much. We decided he had had enough. The doctor agreed to keep him comfortable so we could say goodbye. They brought him up to his room. We held him. We read to him. We told him it was okay to let go and that we loved him. He passed away 45 minutes later in our arms and our lives were changed forever.
We were lucky enough to go on to have our rainbow, Danita who brings us great joy. The person I was before my losses is long gone, though. Now I am Sam and Dani’s mom, bereaved mother; parenting a child on earth and three in heaven. I miss them and myself every day.
Submitted with love by Samuel's mom - Amy Falkner