16 - growingnglowing - the rest is unwritten
Sometimes I look at my baby and have a moment of digestion that he is real. This moment I've experienced many times over. This moment is raw. It is beautiful and occasionally it is painful. I don’t know if I could explain the feeling in words, but I want to try.
This should probably have a general trigger warning inserted.
When Kingsley was born we didn’t get a very sound introduction. He was allowed on my chest for a very short period of time. He whimpered, he didn’t cry. He didn’t cry for a long time. He very weakly called out after a rugged inspection, across the room, around what seemed to be a million strangers. With the events happening you don’t ever realize how much time is whizzing by. My doctor leaned over top of me and she said “hi mama, I know that was a little scary but, don’t you worry, everything is all good, are you ok?”. I couldn’t think of another answer. I just went through a powerfully foreign and mind altering experience. My baby’s here. “I’m good, I feel good, I don’t think I felt any stress”. We tried to breastfeed and he was trying so hard. It just didn’t work, ‘maybe later he’ll be hungry’. He didn’t get to eat again for four days. When I finally got to spend time with him in the private unit I just held him for as long as I could. Then we tested his blood sugar. 0.5. Not ok. “I think it’s best we take him to the nursery just to make sure everything is ok, you know since he got stuck and all, this is a little weird”. “Are you ready to come see him in the nursery now, we’ve run some tests?” I get to hold him again. “He can’t keep his oxygen up, I have to take him, you should go get some rest”. I think I napped a lot in between these moments. The last time I would see my baby again for the next fourteen hours was in a transportation cubicle hooked up to a ventilation machine covered in wires and tubes while getting a blood transplant. Kingsley’s red blood cell count had dropped and there was, at the time, no indication to why. So, without hesitation I signed the paperwork for a blood transfusion and he was transported to another hospital.
I was not discharged until seven o’clock the following morning. I tensely waited for my mom to arrive at the hospital to pick me up. I without thought carried my bag, the diaper bag, his bag, and my mr. sub not-so swiftly out the front door to get that day moving faster. Went home, packed a carry-on, re-packed the baby bag, and sat in my rocking chair. I took three deep breaths. The first breath was shaky. I let out a stream of tears from each eye on the second breath, and took the last breath to compose myself. The drive was two hours. About twenty minutes in I called the number the nurses left me and was rerouted somehow directly to the nurse who did Kingsley’s intake. My personal angel, Joan. She said so softly, “that’s actually my baby, I have him right here he is doing so well much more stable than last night, he’s going to have an ultrasound soon on his brain, his tummy, and his heart. When you get here there’s a longggg bridge that you’ll walk across from the parking lot and you go right up the B elevator to the fourth floor, you’ll find us in Pod B”. That walk, will forever be the longest walk I have ever walked in my life. First, pull yourself out of the car. Make sure you have your water. Mask. Walk up the extensive enclosed bridge. Security and check-in. Defeat.
“Do you know where you’re headed?”
“My baby is in the NICU he got sent here last night I’ve never been here before”
“Are they expecting you?”
“Yes”
“What’s the baby’s last name?”
“Taylor”
“I don’t have that here I need you to use that phone on the wall and call them and get you to tell them to put you in the system”
B4.
Past check-in, straight ahead, make a left. Walk past the cafeteria. Smell that? You’re starving. Floor to ceiling windows, that hurts the eyes on five hours of sleep, don’t look over there. Slight right. Bathroom, change the diaper, pee. Ouch. Why does it feel like everyone can see the stitches in my vagina? Keep waddling down this hallway and you might make it there before he’s ten years old. Turn right, elevators on the left, go up. Signs. What do the signs say? B4. Left, left, NICU. Card and code access only. Defeat, again. Dial tone.
When the doors opened it seemed to foreign and otherworldly. Nothing made sense, I just needed to know what’s going on. Joan grabbed us chairs, a nice soft recliner for me because you know, sitting isn’t quite comfortable for someone twenty-six hours post-partum. So I sat leaned over to my side. They were giving him an ultrasound on his head. Joan so sweetly was giving the information and the run down and paper, so much paperwork. Trying to listen, trying to watch the monitor that the technician is taking snippets of. Joan told me I looked so tired. Looking back, I was falling asleep in the chair. We check-in to our hotel. Joan said call any time. I called and I rested for the night because I needed to pump, and sleep, and prepare for the uncertain days ahead. The experience in the first nicu was not a bad one, they were so lovely.
Day seven Kingsley was formally diagnosed. They bring you into a room, they bring you with doctors, a social worker, and they put all their fingers touching each other separately, leaned forward, elbows just above the knees, and they give you all this information that seems to make sense. Then you take all those words six hours later and you don’t know what anyone has said to you, you have millions of questions and perceptions of what’s going on. “It’s rare”. “We don’t know a ton about it”. “There is a ninety percent chance he will suffer from some form of seizures, about an eighty percent chance he will have some form of learning disability, and he will likely have trouble coordinating his movements due to the underdevelopment of his right frontal lobe”. Endocrinology, Ophthalmology, Neurology, Genetics, Neonatology, Orthopedics, Physiotherapy, Occupational therapy, Paediatrics. Three meds a day, one once, one twice, one three times. Introduce a new one when he needs puberty. Don’t forget that if he breaks an arm you need to give him an intramuscular adrenaline shot in his thigh, hop in an ambulance and make sure he doesn’t die from an adrenal crisis. He needs a life alert subscription. If he gets dry skin, see endo. If he’s spacey, see neuro. Can he roll yet? Do this exercise. His heads kind of flat. Does he need a helmet? Do you think he sees you? Do you think he sees lights? Shadows?
Sometimes when I look at my baby, I think it’s a dream. Until I feel his warm soft hands searching to feel my cheeks, and his ‘never wanna let go’ hugs. I often have the continuing realization that this is real. I really did grow this baby boy and he really is growing so fast. He will never be tiny him again. Those sweet first weeks that so many people get to enjoy I will never have with him. He is growing so fast, and he is picking up on the world slower than some do, but I am so delighted with every ounce of progress he makes. He is so sweet and loving. He’s witty and simple and reminds me of what I value deep down and desire to experience in this lifetime. There’s so many ways to express and feel about being a mother, that sometimes it sits heavy on my chest, as a lump in my throat, or as joy in my cheeks. I told some of our story so that I could give you some understanding to why over and over again I have a shift with actualization. Although it still doesn’t make it any easier to explain. This truly magical experience is such a ride.
So, yeah.