How The NICU Changed My Life

30 Sep 2014

            I had all but reconciled myself with the fact that was I wasn’t ever going to be a dad. I was 42, newly remarried, and Cori and I were very happy with the life we were establishing for ourselves. We both enjoyed our careers, our on-again off-again running and bike riding, our quiet evenings at home reading, watching The Office reruns, and eating take-out. When we began discussing “trying,” I let a glimmer of hope enter my heart.

            Hope can be both a wonderful and dangerous thing. Hope can drive us toward our greatest personal achievements; hope can motivate us when we think all is lost. But hope can be a trap; to have wanted something so badly, only to be denied and disappointed so many times, and then to allow for the possibility once again---to expose that vulnerability willingly---is a risk not for the faint of heart. I made the conscious decision to assume we wouldn’t manage to get pregnant; we would try for a few months, we would be unsuccessful, and we would go back to the original plan.

            After a visit to the ob/gyn, we discovered that Cori had a bicornuate uterus; that, combined with her age (since when was 38 an issue?), put us in the “high risk” category. Bingo. Not gonna happen. A few months of trying and talking, a few weeks of consoling, and that would be that.

            Little did I realize that Cori would approach our efforts to get pregnant in much the same way that she approaches everything in our lives---with a fastidious precision that leaves little room for error. Books, calendars and schedules, supplements….little was left to chance. There were many mornings when she would wake up before me so she could take a pregnancy test; I would lay there quietly, not sure if she wanted me to be awake or not.

            After about three months, she woke me up one morning to show me a positive result. We were both cautiously optimistic, at best. When the results were confirmed by her ob/gyn, I genuinely didn’t know how to react. Of course, I was ecstatic, overjoyed. But in the back of my mind, I wanted to hold back, not let that glimmer of hope of being a father back into my heart again. Even now, I have a hard time describing the bizarre combination of complete happiness and utter dread that I was feeling. I still feel guilty for tempering that happiness I should have enjoyed with thoughts of how we were going to deal with losing a baby we had JUST been told we had conceived.

            I truly am not a cynic by nature---I’m a teacher, for god’s sake, I spend my days looking for even the smallest possibility for potential in kids whom everyone else has given up on. But all during the pregnancy, I kept waiting for the other shoe to drop. For the most part, the first few months went exceedingly well. Besides some nausea, Cori was doing well. As an added bonus, I came home one day to find her making a pot roast---despite the fact that she had been a vegetarian the entire time I had known her, she suddenly had a craving for meat (bonus!). All was well. I was beginning to feel….hopeful.

            That was then we began to hit some bumps in the road. Cori had some bleeding, and despite assurances that it wasn’t a serious concern, I, of course, took this as a sign of the apocalypse. Then there was the ultrasound that identified the baby’s unilateral renal agenesis (I could just have written that he only had one kidney, but the formal diagnosis better reflects the impending sense of doom I was feeling). I literally had to keep myself from asking the doctor when we could expect Cori to miscarry.

            Then, sure enough, a little over 29 weeks in, the other shoe dropped. Cori’s blood pressure spiked and some tests found protein in her urine: preeclampsia. She was immediately admitted to Sparrow. The next few days were a blur: shifting from room to room, conflicting approaches to treatment, utter confusion. One doctor thought there was the possibility of keeping the baby in utero for another 3 or 4 weeks, the next felt the baby should come out immediately. They all, however, made one thing clear: we weren’t leaving the hospital until the baby was out.

            So after five days, they decided it was no longer safe for either Cori or the baby. Sitting by Cori’s disembodied head behind the surgical sheet was surreal. I could tell she was in pain, so I asked if they could give her more anesthetic. When the doctor said “It isn’t surprising she’s in pain; I have her uterus in my hands,” I made the mistake of poking my head over the sheet. I truly wish I hadn’t done that….

            A few moments later, they brought a little alien over to us; he was so ridiculously tiny (or so I thought---once we got up to the NICU, he was huge compared to the other preemies). I was 26 inches and just shy of 11 lbs when I was born, so my frame of reference was a bit skewed. When they told me he was 3 lbs 11 oz, 16 ½ inches, I couldn’t even conceive of ways to keep something so fragile safe.

            Needless to say, we only had a few seconds with Finnegan before they took him to the NICU. As with most things related to a preemie and the ensuing stay in NICU, it’s difficult to convey my feelings and reaction to first seeing my son in a plastic box. Tubes and bandages, CPAP and feeding tube. Beeps and readouts and alarms. Thankfully, every single nurse we worked with did their best to ease us into what turned into a 72-day stay.

            It’s funny to look back now and remember how all of that became the norm rather than the exception. Ten to 12 hours per day, sitting by his bedside, memorizing every curve of his delicate face. We marked the days by landmarks: first time we could kangaroo; first time he finished a bottle; first time we were able to bathe him. But it seemed for every two steps forward, Finn took a step back. He couldn’t quite seem to breathe without assistance. There was about a week where a blood transfusion became a real possibility. Then the fear that the injection he was given for Patent Ductus Arteriosus wasn’t going to work and he was going to require surgery. It seemed to go on and on and on….

            The NICU started to become too familiar. The machines and their seemingly random noises were no longer a mystery. The nurses started to become friends. I have no other experience to compare with our stay at the Sparrow NICU, but without the support those folks provided, I’m not sure I could have held it together. In order for Finn to be released, he had to go 5 consecutive days without a respiratory or cardiac “event”: after making it to 4 days twice and then breaking his streak, they bumped the requirement up to 7 days. Then, to maintain his consistency (and what the nurses had termed “wimpy white boy” status), he made it to 6 days twice. It seemed as though we would never leave. Tom and Katy, the two nurses primarily in charge of Finn’s care, kept reassuring us, reminding us that it was always better to be able to take him home without monitors, etc. Finally, on October 8, six days after his original due date, 72 days after he was born, Finn finally came home.

          Two years later, Finn is a beast---but in a good way. His height puts him in the 99th percentile, and his weight puts him in the 92nd percentile. His vocabulary grows daily (though I’m still not sure why “bokaka” makes reference to a long, yellow fruit), and he has an insatiable curiosity about the world around him. We feel so, so fortunate for his progress; we saw so many children in the NICU who were going to face a long road ahead of them. As a result, Cori and I have decided to try to give back, even if it is in a small way. We’ve joined a group of parents who have all had children in the Sparrow NICU at one time or another, for a variety of reasons, for various lengths of stay, and formed the Sparrow RNICU P.A.L.S. At the moment, we just make visits to the NICU, offering support to parents who are going through what we all experienced. We have monthly pizza nights for them, giving them an outlet for their frustration and confusion. I know that I was incredibly reluctant to share what I was going through at the time, but if I had had another father there, a guy who knew that I was keeping it all in for my wife while tearing myself up inside for feeling helpless, it may have helped. If I can do that for one dad, I’ll consider it a success.

             If any parents who have had a NICU experience are interested in learning more about our group, please contact Jessica Hamrick at jessica.hamrick@sparrow.org. We just ask that you be at least a year removed from your ‘graduate’s” stay.