Thursday, October 8, 2009

Always in the Back of My Mind

"Since having my son at 24 weeks gestation, almost 4 years ago, I have tried to create more awareness about these tiny fighters. When someone hears that you have had a baby 16 weeks early the first thing they ask you is if the baby is okay. If you start to explain that lots of therapy is needed and that problems could come up at a later date that is where the understanding ends." - from

I just stumbled across an article (quoted above) that hit home with me. The author, preemie mom Lisa Arneill, reflects on the risks associated with a preemie, even one who appears to be doing great. The effects of prematurity linger a lot longer than most folks consider a child a preemie. Yes, Becca is amazing and doing very well, and no, I don't want her (or me!) to be defined by her prematurity, but I as her mother (and John as her father) have to be vigilant and proactive about potential issues and risks. Becca is strong and sturdy, but she still missed out on some major development in the womb; there's just no getting around that. There are reasons why pregnancies are supposed to last 40 weeks.

I think it's human nature to want things to be finished and finished well. I think we like not just happy endings, but endings in general. We don't do well with ambiguity. We're not good at waiting and seeing. So it's natural for folks to want to think that Becca is "over" being a preemie. Sorry, folks, it's just not that easy. I wish it were. You know, of course, that I couldn't be happier with how well Becca has done and is doing, but I can't just let down my guard, enroll her in preschool, and get on with my life.  Not everybody understands why I do what I do with Becca, and we humans are quick to judge (especially new mothers, it seems), but until you truly understand what it is to have and to be a preemie, neither you nor I should expect you to understand the sometimes difficult and unpopular choices we have to make on Becca's behalf.

I don't think we can really comprehend what it is to be born severely premature. What must that experience have been like for Becca? She nearly, in a sense, suffocated in the womb and died from malnutrition. She was taken from this dangerous place into an even more dangerous one, transitioning from fetus to baby far before her tiny body was ready to breathe air, eat milk, see, hear, or even be touched. She was designed to be safe and secure for 3 more months, but instead she was immediately intubated, hooked to machines, covered in wires, poked and prodded and stuck endlessly for months. There was not a single system in her tiny body that was really ready to be functioning outside of the womb. Machines had to do the work that her body was not yet able to do, and it went on that way for months. I am ridiculously, inexpressibly grateful for her nurses and doctors who took incredibly gentle and loving care of her for those months...but let's face it, there's no way to make a spinal tap comfortable for a fetus baby.

I thank God every night that Becca made her appearance at just the right time, no sooner, no later, given our circumstances. I am comforted by the fact that she won't have any recollections of these first too-early months.  (Except for you guys, Leigh, Millie, Carla, Heather, and Stacy...I firmly believe that as long as she keeps seeing you guys, she will remember you!)  But we all know that she was born too soon.  And the question of what that may mean for her 1, 2, 5, 10, 25, and 50 years down the line is always in the back of my mind.


  1. I adore that itty bitty baby girl.
    And her parents.

    For the times I see only her successes and not her challenges, forgive me. I don't walk in your shoes. But I will always walk beside you.

    Love you so much!

  2. Stumbled across your blog... I used to be a nurse in NICU, before I left to be home with my own babies. One of my little people was diagnosed with autism at 2 years old, and I hear you about other people. I have learned so much about being gracious with other people who just don't know, and am learning to be gracious with myself about the things I don't know. (What it feels like to have your marriage break up or certain important people in your life die, for eg.) There are lots of shoes we haven't walked in yet, but one day may. You haven't had an easy one, but we all have our "things" that give us opportunity to be very human.
    God bless your itty bitty family. Your girl is beautiful. I love the bow on the helmet!

  3. Nancy, you never fail to amaze me with the insight that is borne from your utter honesty. Thank you for being our gentle teacher, and for continuing to tell the truth.

    Sending you love and hugs,

  4. As the mother of a 25 weeker, I can certainly relate to your eloquently expressed entry. Our son is nearly 2.5 years old and "doing well." He "doesn't look like a preemie" (whatever that means). And yet we have to be vigilant...more vigilant than most parents, especially in the current cold/flu environment.

    Best wishes to you and Becca.