Hand to Hold's Official Blog: Written by Parents for Parents

Let Go of “What If”: Celebrate the Milestones

Zoe's first diaper change

1 day old – dad changing Zoe’s diaper

Parents of “typically” developing children will marvel when their baby takes their first steps and says their first word.  And when their child graduates from high school it is a day of joy to be sure.  Each and every mark is to be celebrated and should be.  As parents of babies born prematurely or critically ill, finding moments to celebrate can be challenging.  Each day we are often given a plethora of statistics about the mortality and morbidity of our children and may often be told that their futures will be difficult, that neurocognitive damage is almost certain.  This leaves many parents feeling a load of anxiety, unsure of what that may truly mean for their child and for their family.  For others, guilt may reign supreme as we blame ourselves for the early start to life our children experience.  Just before our triplets were born at 25 weeks 5 days gestation the neonatologist told us it would be a miracle if any of them survived the delivery; and if we were lucky enough, after months in the NICU, to bring just one of them home, we were most likely facing a lifetime of chronic medical conditions and developmental delays.

In some ways this doctor was right.  It was a miracle that any of our girls survived the delivery.  And we did spend months in the NICU, 9 ½ months to be exact.  She was also right in saying that we did not know what the future would hold for our girls, how could we?  No one can predict because every baby is different.  I would drive myself crazy running all the “what if” scenarios in my mind, trying to imagine as far down the road as college, while my daughters lay in their isolettes, barely weighing two pounds.  One of Avery’s nurses gave me the best advice I could have received and is something I often share with new NICU parents.  Vana said “Keira, you cannot look for the light at the end of the tunnel yet.  Its there, but you can’t look for it yet.  There are no guarantees.  What you have is today.  Today you can choose to love your girls and promise them you’ll do whatever they need no matter what the outcomes are.  You cannot control what the future holds and worrying about the unknown does not do you or those little babies any good.  Love your girls today, because that is what you have right now.”

8 month old in the NICU with mom

Cherishing the moment

Her words stung a little at first but as they sunk in I realized she was right.  A friend of mine once told me: “Worrying is like paying interest on a debt you may not owe.”  Which is true!  It is a hard concept to put into practice as parents of babies whose lives are in jeopardy, but if we can allow ourselves to let go of the worry and the “what ifs”, even for a few hours, we create an opportunity for ourselves and our partners to focus on the day at hand.  We should ask ourselves: What can we do today to be involved in our baby’s care?  How can we show our baby we love him/her?  What can we celebrate today?  It doesn’t have to be a big milestone like successfully weaning off the ventilator or drinking an entire bottle.  We can celebrate the small steps, which, for our fragile babies are huge accomplishments such as holding a good sat for 30 minutes, or weaning one microgram of a medication, or even having a dirty diaper.

This mentality should carry over after the NICU as well as we venture into the world of Early Intervention and multiple specialist appointments.  There is so much in the lives of parents of preemies that can be overwhelming, and rightly so.  However, I think we miss out on opportunities to notice the small steps if we allow ourselves to drown in worry.  Can you try today to find one thing to celebrate?  I’m not saying it will be easy; it certainly wasn’t for me.  But as I look back on even the worst days, like the day we lost Zoe, I am thankful for the last moment I saw her sparkling green eyes, when she reached up and twirled my hair one last time.  Try to make this part of your NICU or daily routine as you sit down for dinner, take your shower, or climb into bed – find one thing that day and say out loud “Today I can celebrate_________.”

 

Keira Sorrells About Keira Sorrells

Keira Sorrells (MS) is the mother of triplets, Avery, Lily, and Zoe, born at 25 weeks. Avery and Lily spent four months in the NICU and Zoe was there for 9.5 months. After coming home, Zoe was rehospitalized at 14 months and died suddenly from a secondary infection. As a result of those experiences, Keira founded the Zoe Rose Memorial Foundation which offers support to parents of premature infants and those who have lost an infant; as well as the Preemie Parent Alliance, which connects parent-led, preemie support organizations across the country. Her faith and connecting with preemie and bereaved parents has given her hope when it was hard to find. Follow her on Twitter, Facebook or on her personal blog.

Comments

  1. I just read this and it totally hit home. I gave birth to my triplets at 24 w 1 day after being on bed rest since 18 weeks BC my little boys water broke. We were also warned of all of the possibilities that could happen to babies being born so early. Despite that we asked for them to be resessitated. May 4 th 2012 my babies were born. My girl Delilah did not make it out of the or.Madelyn and Mario were rushed into the nicu. Mario lived 20 hrs but with barely any lungs my biggest baby couldn’t makeit and longer. Madelyn who weighed 1 lbs 4.5 oz ( smallest of the 3 ) survived and thrived in the nicu. We brought her home last week, 1 week before my due date. I thank god everyday for her.
    Nicu parents are a different kind of parents.

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