The Neonatal Intensive Care Unit is as foreign a world as Avatar. Unless you’ve had a baby in the NICU and been there with him, you don’t have the capacity to fully understand the emotions, energy, and exhaustion that goes into this season of life. I didn’t have the capacity before Gabriel was born. If you’ve had a healthy pregnancy and baby, you probably grasp a minute aspect of the heartache, but cannot fathom the day-to-day angst knowing that with the sounding of each alarm, it may be the last.
I recognize now the things I used to take for granted and unfortunately, I’m having a hard time dealing with people who do that very thing. Here is some perspective: I only get to hold Gabriel once a day. I can only change his diaper every four hours. To touch my son, I have to “scrub up” using surgical scrub and apply hand sanitizer after touching things like my phone, a pen, my diaper bag, the counter, the chair, my sleeve, etc. I can’t kiss him for risk of infection. I can’t play with his toes or fingers or pat his back because he needs to sleep to gain weight and his brain is not developed enough yet to handle outside stimulation because he’s a preemie. I leave the hospital every night without my baby… and I’m being told that it will be after Thanksgiving before I’ll leave this place with him.
My point is if you haven’t been in this situation day in and day out, you can’t understand it. It’s impossible… and that’s OKAY!
On the flip side, however, I’ve bonded and grieved and celebrated with other mom’s who are also here. Gabriel has his accomplishments and strengths, but he also has his hurdles and diagnoses, just like the other 40 or so babies in the NICU.
Baby Reid went through a completely normal, uneventful pregnancy. An hour after his mom went into labor, and thankfully she was at the hospital in time, his umbilical cord broke. Within 12 minutes (3 of which was the emergency c-section, record timing) he was delivered with not a single drop of blood in his body, literally the color of the screen you’re looking at. 95% of babies this happens to die. The other 5% are severely handicapped. His doctor prepared his mom for facing the decision of taking him off life support the day after he was born. I got close to his mom, cried with her, and celebrated the report that he only has a pin head size of brain damage that will never cause him a problem. He got to go home a few days later. Reid is a medical phenomenon, a miracle.
Baby Illie was born at home. Ten hours later her mom realized she wasn’t breathing. For days, the doctors had no answers. A week later they figured out that it’s her pituitary gland, adrenal glands, and thyroid causing the problem. Her mom has to give her an intramuscular shot once a day for the rest of her life. If she breaks a bone or gets the flu, it’s a life or death situation for her.
Baby Jaylynn was born a few weeks early as a twin, he was Gabriel’s roommate for less than 24 hours. According to the neonatologist, Jaylynn was the sickest baby in the NICU, his heart was failing, quickly. Jaylynn was there one afternoon and gone by 8am the next morning. He was sent to another hospital to await a heart transplant… but hearts that small don’t come around often. I’m not sure what’s happened to him.
Baby Ann was born with spina bifida (a portion of her spinal cord exposed). I met her mom while we both stayed in Antepartum. Her mom knew about the spina bifida, but after Ann was born, the doctors said she’d only live for two hours…that was several days ago. Ann just had an MRI, I cried with her mom as she shared the results. Ann’s brain and spine will never grow. She may live a few more weeks or up to a year. She’s going home today to be with her family until she passes.
Comparatively, Gabriel has done really well. Some days these stories help me.