Tuesday, August 6, 2013


Yesterday, 4 years ago, I should have been delivering triplets...well, not really. When we found out we were expecting triplets, no breaths were taken between telling us "the news" and telling us due dates were really just arbitrary. Their importance lay only in telling us HOW early our babies would be born - not if they would be. Our babies would be premature. That was a fact. Typical gestation was about 32 weeks - though some mothers (who typically had previous pregnancies) made it to 34. 36 weeks happened - but was exceedingly rare. Our bottom line goal was to make it past 28 weeks with the babies each weighing over 2 pounds. That would give us the most positive outcome for all involved.

Part of me still feels like I should be snuggling with 3 - 4 year olds.

I had, I think, a unique perspective as a NICU mother. I'd seen the inside of those walls before - for the last 6 weeks of nursing school, I spent evenings in the NICU caring for tiny TINY babies. I had just enough experience and vocabulary to know what 24 weeks pregnant meant...and to know that we wouldn't have luxuries like holding, discussion of the social implications of long term nursing, arguing over co-sleeping and differences in upbringing. It didn't matter what outfits they had, what they would ride home in, if we had a room ready. It was quite simple: when one has a baby at 24 weeks gestation, there is really only one question: is the baby alive? well, is he? is she? now? what about now? still alive? ok...what about now?

I remember when I came out of my initial fog enough to see Brent's face - really see it. I have no idea what day it was or how much time I'd lost. He was changed. He was afraid. He was in so much shock. Every single family member or friend who came to see our babies cried. Cried. They would try to tell us how beautiful our family was on occasion...but end up sort of whispering, knowing that beautiful just wasn't really appropriate...because it wasn't. There were people that just came and sat and stared at me - or us. There really wasn't anything to say. It just was.

And were they alive now?

On occasion, I read things like this. I know how detached medical professionals can be. I relied heavily on that detachment to get through making heart wrenching decisions for our children. I watched as a nurse judged us and took jabs at us with medical terms and medicine dosing when we were just trying to have a moment's peace with Kuylen. I still remember the cold explanation when we rejoiced over a tiny TINY (1cc) wet diaper only to be told it was artificially induced by heavy doses of renal medications. I was angry. However, I remember asking "why" during school to the utter horror of my preceptor as I watched twin boys suffer for days before succumbing to their extreme prematurity. I know that the nurse was doing the same thing. The worry must have been there that she would be "stuck" caring for this suffering "lost cause" for shift after shift while we sat crying, wringing our hands and begging that he be alright. Her heart was pure, but her actions were just so bitter. I know that *the right* thing was done when we did discuss end of life care for Kuylen with the doctor and nurse practitioner. They saw us come solemnly into the NICU and stand staring at Kuylen. The doctor quietly asked that the NP stand by as they turned off the color skewing billi lights and quieted the machines. For the first time, we saw him. No matter how much we wished it was different, we both, I think, knew what Kuylen was saying. It was time. Those few moments and that one request by the doctor gave us a lifetime of peace about our decisions. If you just listen, they'll tell you. Children are born so wise. You teach the child the world. The child teaches you about himself - even if said child only has moments to survive.

Everything in the NICU has consequences - and many times, the "good" outcome, isn't really. The scars referred to in that link exist on Mary Louise and David's heels. Their skin would blister with certain tapes and adhesives. I worried about contractures and severe facial scaring from tape and skin tearing as we gained hope that we would be able to bring *some part* of our 2 survivors home. Though somewhat gratuitous, the doctor is right - people don't understand. How in the world can they? There needs to be support and explanation. There needs to remain a standard of care but also flexibility to assess individual situations. But medical personnel are typically ill-equipped with time and psychological training to provide such - and even if they try their very hardest, most people simply can't understand until they are there...or more often, in hindsight. Furthermore, those same medical "experts" can't be what we, as NICU parents really want: future predictors. They can't tell us with all certainty what's to come. They offer statistics and probailities - but for each and every number they offer, there are high and low cases - that's what makes the average true. There's always possibility fueling the everlasting pleading hope of the NICU parent.

Once home, there is more - so much more. You've brought baby home alive. Congratulations. You are now part of a mass machine of checks and balances and more experts to make sure sweet one stays that way. A system that is always on the verge of utter chaos and bankruptcy, corruption and politics. A system that is designed to help those in need, but also, unfortunately, those who typically lack voice. Enter mass budget cuts, insurance denials, maxed out finances. No where to turn.

The percentages, the outcomes, the quality of life conundrums - and at the center is the fluidity of the medical field and the religion. The religion we grasp and cling to keep in hopes that it can overcome the very science God allows us to explore and the technology that exploration allows us to create.

Most people have never seen the inside of a neonatal unit. They've never passed a tiny bed only to see a mound of fabric move and realize that a 1 pound human was just shifting in slumber. They've never watched with a smile as their child turned blue and had to be pounded and rubbed on the back - because sweet baby was just trying to learn to breathe while eating and regardless of outcome, you, as a parent were just so happy to touch the wee one for an instant. Unless you must, there is no way to personally understand the gravity of decisions made in the bustle of an eerily quiet but incredibly packed delivery room where the only sound is the weeping mother.

There are monitor beeps and ventilator rhythms. There are no cries, no coos and there darn sure isn't any question about "spoiling" the baby that "wants to be held again". Yet, the room is filled with children.

And...are they still alive?

Yesterday was my due date. 4 years past. Mary Louise and David and Kuylen are still very much alive. It is with the grace of humanity that they continue to each hold special places in so many hearts.

The other day I spoke to an IT guy about our router (I know - amazing. Sometimes, I can do things like that.) He asked about the noise level here and asked the inevitable: How many?

"3 at home," I answered smiling as I took the advice of a loved one who offered it so long ago as I struggled to continue to acknowledge Kuylen in a non-confrontational way.

He picked up on it immediately. "At home?" he asked.

"Yes, we lost a son and that is my way of acknowledging him."

And that was that - we moved on with simple explanation.

Thank you, IT guy.

Yesterday, we went for a run / bike ride at the nearby state park. David rode 4 miles!! Mary Louise rode 1.5 (!!) then the rest in the stroller. I walked / ran 3.5 miles with Everett and ML. Brent rode the 4 with David. On our way out, Mary Louise saw a deer we'd passed while riding.

"Das a Mommy deer I think."
"Oh? ok."
"What should we name her Mom?"
"I don't know, what do you think?"
"Mary Louise, did you say you wanted to name that deer Fuschia?"
 "Yes. That's her name."
"Of course it is."

That's my girl.

David actually cried when we put his bike back on the truck after he'd rode 4 miles. He wanted to "go wound da bwok and far far away AGAIN!" We were honestly worried he'd get over heated...but ultimately, his determination and get up and go attitude will take him as far as he wants to go.

Kuylen continues to offer quiet strength in times of need. I have gained empathy, compassion and tolerance. I know people see *just* 2. Though I still cringe slightly as I manage a smile response when some asks, "TWINS?!" (for the record, I still think it's a bizarre exchange: "Twins?!" ... (smile, slight affirmative head bobble), "I thought so." stranger goes on about their business - what is the point exactly? Can someone please explain that to me?), I understand what they see - and am occasionally (pleasantly) surprised when people pick up on my ambiguity in response.

Our children have scars - both physical and emotional (or perhaps, the emotional scars are more mine...). But, with careful encouragement and care, they thrive. They are, by all appearances, pretty typical - very typical. I wished for a day that they would be identified by who they are, and not by their extremely early births. At age 4, they are Mary Louise and David - the children - not the micro-preemies.

I'm pretty sure that day has arrived. Rock on kiddos. Happy due date!



  1. Heather,

    I'm a blog follower and even though we've never met, I wanted to comment on this post. I am a former preemie (25 week-er), and surviving twin, who is "all grown up" now and 35 yrs old. I love the beautiful words in your post! Like ML and David, I too, have my physical "preemie scars". Emotionally I am healing through my time as a volunteer holding babies in the NICU (the very same one where my twin sister and I were cared for as preemies!) and I am a member of a wonderful support group for surviving twins, multiples and their families! www.twinlesstwins.org

    God Bless You and your beautiful family!