For the last week I have been able to sleep five or six hours straight each night. With all the renewed energy this has afforded me I am finally getting around to writing. And I have a lot to catch up on.
On March 13th we welcomed our son Lewis into the world. Afternoon sunlight streamed in through the blinds of the birthing suite, the sounds of Andrew Bird’s violin soared through the room from my meticulously planned playlist, and the midwife with her short cropped hair and infectious reassuring smile lifted the crying mauve-colored boy on to my chest.
Then things got a little complicated. I had not even counted his ten tiny toes and ten tiny fingers before Lewis and I had to be separated. The little red splotches covering his body that I had assumed were normal baby markings were actually small hemorrhages forming beneath the skin. The midwife, no longer smiling, had recognized these at once as the first sign of missing platelets.
Lewis had what is called Neonatal alloimmune thrombocytopenia (NAIT). Summed up, this means that due to an incompatibility between my platelet type and Fañch’s, Lewis’ platelet count at birth was only 5000. To put that number into perspective, a healthy level is between 150,000 and 400,000. This is why instead of having our two hours of skin-to-skin contact, Lewis and I were separated. Accompanied by Fañch, he was whisked off to get an ultrasound of his brain to check for a possible brain bleed caused from his passage through the birth canal.
Within an hour the midwife came back to update me. Lewis’ brain scan was clear. The first major hurdle was cleared. By that point he had been transferred up to the NICU and was going to receive his first transfusion of platelets.
By that evening the epidural had finally worn off and I was able to leave the confines of the birthing suite, pushed in a wheelchair by the midwife student who had assisted during the birth. We headed straight for the NICU.
It was quiet up in Lewis’ corner of the hospital. The lights were dimmed and the only noise was that of beeping monitors from his room and those around his. Fañch stood next to Lewis’ bed, staring down at his son through tired eyes. He looked up when she wheeled me in and gave me a small smile meant to reassure. Lewis was wearing nothing but a diaper, his gangly arms and legs sprawled out, with wires and tubes crisscrossing up and around towards the monitors and IV fluids. Fañch and I sat at his side all evening, staring at his little sleeping form, exchanging few words. Little by little Fañch filled me in on all that had happened after they left the birthing suite. It had not been easy for him to watch as they inserted IVs into Lewis’ hands and head, or to see him put through so many tests in those first hours of life. Talk about a crash course in some of the toughest parts of parenting.
In the days that followed we continued to spend nearly all of our time with Lewis in the NICU. The hardest part was at night when I would have to say goodnight and leave him to sleep in my own room on the maternity ward down the hall. It was a battle between feeling like I was abandoning him and being so overcome with exhaustion that I knew I had to get some sleep. The only thing that allowed me to leave at night was knowing he was being taken care of by the best nurses I have ever met in my life. The stellar NICU team felt like family by the end after having walked alongside us for every step during those ten days.
By the 10th day his platele count had reached 180k and the doctor informed us that we would be able to take Lewis home. Seeing her walk in the room, her smile giving away the good news before she had even spoken, I felt as though I had finally exhaled after holding in my breath for much too long.
During our hospital stay I had avoided looking online for information about NAIT. I did not want to read about worse case scenarios or success rates. I counted solely on the doctor, the intern, and NICU nurses to tell me what I needed to know. Seeing Lewis all hooked up and receiving transfusions was scary enough without the added stress of Google search results. Only afterwards, once he was in the clear, did I allow myself to read a little more about what he went through. And I am glad I waited. As my doctor told me afterwards, someone or something was looking out for Lewis that Monday afternoon in the sunny birthing suite. NAIT is rare, in the ten years she has been seeing patients my doctor has never come across a case. 1 in 3 babies born with NAIT either don’t make it through the childbirth due to a brain hemorrhage or they are permanently brain damaged. Upon hearing that we were even more thankful and in awe of our boy. That day could have turned out so differently and we are fortunate to have him in our arms today.
Now that that chapter of his life is over we have moved on to typical baby life. He eats (a lot!) and sleeps well. He has begun to smile in response to our smiles and our songs and the other day he even made what sounded like a laugh. He is a pretty serious little guy and observes all that is around him, often staring transfixed by faces and lights. In a couple days he will be two months old and we have begun dressing him in six month sizes already!
I will write more soon as I continue to figure out this thing called motherhood. Every day is a new adventure here at Fern Island Farm with our Lewis. Thank you to everyone that has supported us and encouraged us these last two months, especially during those difficult first days at the hospital. Lewis is lucky to have to many people that love him already from both sides of the Atlantic!