Jon found me on the couch reading. â€œWow. Are you reading a real book?â€
And indeed I was. It was a paperback, not my standard digital iAppendage. A Pound of Hope â€“ the story of miracle micropreemie twin boys by Jennifer Kemper Sinconis.Â
â€œWhy do you insist on reading those stories? Jon asked. â€œWhy do you want to relive that time? It’s over. It’s done. They’re upstairs refusing to nap.â€
Every NICU story is unique (I say this slightly hypocritically since my guys had a pretty close to exactly-the-same similar stay â€“ so weâ€™ll say experience of the parents.) But for everyone whoâ€™s joined this club, the stories shared let people know they are not alone. We may be the outliers, but for those living the nightmare, it is simply a new normal.
Iâ€™d yet to read a story about the miracle of wimpy white boy twins. So I sat down with â€œA Pound of Hopeâ€ and refused to put it down.
The book is written in the style of the personal journal it once was. Some entries are merely health updates, while others appear to be the ranting of frantic mother trying to find some semblance of sanity in her life. The same motivation behind this blog.
Once again, the description of the NICU remains the same â€“ at yet another hospital unknown to me. The scrubbing ritual, the hallway leading to entry doors, the cold uninviting plastic boxes where babies live, the wires, beeps and alarms, the shell-shocked parents.
Throughout the tale, footnotes appear at the bottom of pages â€“ explaining medical terminology. And while I appreciated the time the author took to explain things like PICC line or ROP, it struck me as how obvious these words were â€“ who doesnâ€™t know such terms as blood gas or apnea? And it immediately hit me. I too am a NICU grad. (Did you know parents graduate too? Takes parenting to a whole new level of hovering.)
Who wouldnâ€™t know acronyms like RSV, CPAP or CLD? Anyone who hasnâ€™t been in close contact with a preemie parent, thatâ€™s who.
Acronyms like NICU â€“ Nick-yoo. How adorable sounding. Most of us know that one, at least peripherally. Donâ€™t forget it means neo-natal intensive care unit. This is the home of seriously sick babies.
The shock of the NICU will fade. But it will never leave. Congratulations. You are a parent now. The mother of children who are critically ill.
â€œNew to me are feelings of complete vulnerability. Anything will set me off â€“ even a kind word from a stranger asking, â€˜How are you today?â€™ I am fighting back tears and the ache in my chest is ever-present. It keeps me awake at night. I try to sleep, but my heart is stretched so think I think it might burst.â€
The above is the most apropos definition I have ever heard. Every parent survives the NICU experience their own way. I was lucky to have such support and prior knowledge that we would soon end up there. (I even got a pre-admission tour.)
Sinconis also addresses the financial burden that comes with such a fight for life. The average stay of a micropreemie is $20k per day. And you thought I was joking when I refer to my guys as the Million Dollar Miracle Muppets.
But the main take away from this book? Be your childâ€™s parent. For one so fragile and tiny, you are their voice. Fight for them. You may not be allowed to bring them home just yet, but you are still their parent. And entitled to an equal voice in their care.
The foreword to this book teases, â€œIf you donâ€™t cry you have no tear ducts.â€
I prepared myself, cuddling up on my couch with a box of tissues at the ready. But I didnâ€™t cry.
(Trust me â€“ I still have tear ducts. I cry way to often for ridiculous reasons.) Iâ€™ve lived the NICU story. And yes, I relive it through the many stories of others I consume with reckless abandon toward my own mental state. Many of you canâ€™t begin to imagine what Sinconis went through. Far too many of you can.
I didnâ€™t cry because this isnâ€™t a tearjerker. Instead it is an aptly titled story. It is one of hope.
I shall leave this review with the essay that begins the story of Aiden and Ethan, miracle micropreemies. Because at the heart of all preemie stories â€“ this is the hope eternal as we watch our miracles grow.
Do They Remember
My son is 21 months old and he is only just now strong enough to pull himself upright holding on to furniture. Standing at a coffee table, he concentrates on stacking alphabet blocks one atop the other â€“ ignoring the evening news that airs on the TV behind him.
The news coverage is about hospital care. The camera cuts to the scene of a Neonatal Intensive Care Unit where a reporter is interviewing a doctor.
The reporterâ€™s microphone picks up the background sound of a ventilator alarm. Instantly my son pulls one arm up across his forehead as if to protect him from danger. Then he slowly turns to stare at the TV.
As he peeks out from behind his arm held like a shield across his face, the newscast shifts to another story. It is only then that my boy exhales deeply and resumes his play.
Does he remember?
I hope not.