What If…

I often feel as if I hang in the balance of the “what ifs”.

There are the “what ifs” that didn’t work out in Owen’s favor.

  • What if he hadn’t gotten CMV?  Maybe if I had chosen the unthinkable – to not breastfeed?  Would his course have been different? (You can read this story here)
  • What if I had been seeing a Maternal Fetal Medicine doctor from the start, maybe P17 and/or a cerclage would have helped me stay pregnant longer.
  • What if I had gone in one week earlier when it felt like Owen was kicking my tail bone?  Is that when my cervix started to thin?  Could I have still gotten a cerclage and stayed pregnant longer?
  • What if we had kept Kellen out of school Owen’s first winter home, would that have kept Owen healthier?  Could he be off oxygen today?
  • Kyle often thinks, what if he had helped me paint the boys room and rearrange the furniture – did I do something then?
  • My dad has wondered, what if I hadn’t been chasing Kellen and carrying him as he had a temper tantrum the day before I went into the hospital – did that start the labor?

There are also the “what ifs” that, thankfully did not happen.   Most notably:  what if he had died?

Is it logical for me to think about all these “what ifs”?  No, I know I can’t change what happened and I truly believe I did nothing that caused Owen’s early arrival.

Is it human nature to think about all these “what ifs”?  Yes.

For the most part, I focus on what’s happening and what is in front of me.  But, I will not apologize for the occasional “what if”.  I really can’t imagine that Owen will grow up never wondering how his life would be different had he not been born so soon.  I promise you, my 5’ 7” brother wonders if he would have been taller than his 5’ 10” sister, had he not been born too soon.

If I don’t acknowledge these thoughts exist –   If I do what so many people suggest, and “don’t think that way” (which is really just pretend they aren’t there) – how will I ever be able to help Owen work through his own, “what ifs”?

The feelings are real.  They won’t stop me from helping my son succeed and I can see in Owen that he won’t be stopped from succeeding.  But I do believe, it is okay to admit that the journey of life, is not quite the way I planned.

No Apologies

I think by now, everyone who has ever known me knows that Owen’s story was shared on Minneapolis CBS news station, WCCO with this story.

I was thrilled about the exposure to Owen’s story because it’s so important that people understand that sometimes things as simple as eating are things that too many kids aren’t able to do.  Then today, I was catching up on some of the other blogs that I follow and I smiled when I saw this post from Parenting the ‘A’ Team.  It really hit home for me the significance of reporter, Rachel Slavik and WCCO featuring Owen’s story.  She/They got it!  They understood that these teeny steps, like swallowing a little puree for Thanksgiving, IS a big deal.

It took me back to when I was recently on a non-preemie blog and saw a comment from a reader that said something like, “I don’t understand why special needs parents think they need to tell us every. single. milestone!  I get it, their kid is different, but I shouldn’t have to do cartwheels for each step”  I was a little hurt by the comment – so hurt that I couldn’t find the words to respond (not a very common occurrence).

But, it did change my behavior.  I started apologizing when I’d celebrate Owen’s (and even, Kellen’s) successes.  Like in this post and, more subtly, this one too. I didn’t want to be that annoying parent, so some milestones, I didn’t even mention.

I’m frustrated with that woman, for not understanding.  But more, I’m frustrated with myself for letting her make me feel that I should change my behavior.

It doesn’t matter what need level your child is; as a parent, each milestone that a child puts hours and weeks and months into accomplishing IS worth mentioning and celebrating.  We live in a world that idolizes athletes and movie actors that are great because of the dedication that they put into their sport or craft.  Some people put just as much work into much less glamorous tasks like; eating and walking and talking.  It doesn’t matter the glitz of the prize, the work and effort and ultimately the accomplishment is what is celebrated.

Thank you, Gillette Children’s Specialty Clinics, for making it happen and Rachel and WCCO team for making a beautiful story that helped me and your viewers understand that sometimes seeming small steps are giant accomplishments worth sharing within the family and the community (even a major market).

I shared this picture already this week, but it’s too perfect, that I must share it again.

Once Tiny…Always Strong.

Healthy Babies Are Worth The Wait

Over the last couple of months, I’ve done some volunteer writing for March of Dimes (MOD) Minnesota and have joined their Marketing Committee.  It’s an honor for me to do this work because I believe that without March of Dimes funding of important prematurity research, Owen would not be here today. For example, grantees of MOD have developed surfactant therapy, a treatment that has reduced deaths of respiratory distress syndrome by two-thirds.  In addition to research, MOD also looks to support NICU families.  The hospital that has managed all of Owen’s care, University of Minnesota Amplatz Children’s Hospital, will very soon be the second March of Dimes Family Support Site in the state of MN.  Another focus area for MOD is education.  Their current campaign, “Healthy Babies are Worth the Wait” is aimed at helping women understand the risks of electing, without medical cause, to induce before the 39th week of pregnancy.  As the mom of two preemies, I was asked what “Healthy Babies are Worth the Wait” means to me.  Here is my message to moms considering an medically unnecessary early induction.

You know that woman who says how great she felt when she was pregnant?  She also radiated joy and sunshine the whole time.   She didn’t get morning sickness or stretch marks, and somehow, she escaped waddling through her third trimester.  Does this woman actually exist?  Can she?  I’m inclined to believe that she probably just remembers her pregnancy that way and didn’t really feel that way.  I guess, I don’t really know.

I know this much for sure: that woman is not me.

I am the woman who hit the wall of nausea about fifteen minutes after conception and it proceeded well into the second trimester.  Reglan was the only reason I was able to stay out of the hospital from losing too much weight.  I was so ill that I felt it was better to tell my bosses and several co-workers, that I was pregnant at about 6 weeks because I didn’t want them to think that my extreme fatigue, calling in sick and sudden and frequent trips to the restroom were indications of me not liking, or being good at, my job.

In both of my pregnancies, I was thrilled to be having a baby, however, “sunshine” and “joy” are not words anyone would have used to describe me.  Those hormones!  I have no idea who that crazy woman was that took over my emotions, but even I didn’t like her.  Then there are all the comments about how big, or not big, you are.  Why do people think that it’s okay to discuss a woman’s weight?  Openly?  To her face?   I don’t care how pregnant a woman is.  It’s never…ever…okay to say, “Woah!  You look like you’re about to pop!”  (True story, by the way, and I was only 33 weeks.)

I could go on and on about the inconveniences of pregnancy and there are entire books dedicated to that subject, much of which is embarrassing.  I’ll just get to my point; pregnancy wasn’t exactly fun for me.  In both of my pregnancies, I did complain about how I felt.  In fact, it was right around the time of that earlier mentioned comment (from the extremely rude store clerk) that I wondered if I could possibly get 7 weeks bigger and more uncomfortable.

Unfortunately, I will never know.  I never got those last weeks.

One week later, at 34 weeks pregnant, I burst into a sob and, wide-eyed, stared down the doctor who told me my son was going to be born that day as she started explaining the risks of a premature birth.  A little more than two years later, I again, heard the risks of a premature birth.  This time, I was too numb to cry.  How do you respond when you hear your baby has less than a 50% chance of surviving and if he does live, there is an 80% chance he will have long-term issues due to being born at only 24 weeks?

Some women who have, or are, experiencing those final weeks of pregnancy tell me that I am lucky that I never had to experience those uncomfortable weeks.  I’m never sure how to respond to those women.

Are they really not able to understand the agony of your baby being born too soon?

While I know, I don’t fully understand those last weeks of pregnancy.  I do understand the alternative.  There is the silence after he is born as you wait…forever, it seems…for him to cry.  Then, there is the long, lonely wheelchair ride as you’re being discharged from the hospital while your child is still in the NICU.  As you wait for him to get healthy, you pump, and pump and pump in hopes that a machine will keep your milk supply up, because your baby is not ready to breastfeed.  You have to ask to hold your own baby…and sometimes, you’re told “no.”  There is nothing like being introduced to parenthood by being asked to help hold down your child while the nurse inserts a tube from his nose to his stomach (I said “no” by the way. You do have that right).  There are IV’s, often in the head, so the baby can’t pull it out as easily and when you hold your baby you’re fighting with the cords attached to him.  And then one day, you get out of the hospital and you dread things like weight checks and developmental screenings.  Maybe your child passes, but if he does, it’s probably with a D+.  You anxiously watch as his daycare friends and your friends’ kids learn to do everything faster than he and you wonder, “Will he always be behind?”

The scenario I just described is the scenario of my late-term preemie, Kellen.  He’s the 34 weeker who had about as smooth of a course as a 34 weeker can have.  It took about 2.5 years before I stopped noticing the differences between him and his friends.  He’s one of the lucky ones; it doesn’t seem there will be long term effects.

On the other hand, there is my very complicated course, 24 weeker, Owen.  He too, is doing amazingly well given the events of his 6 month stay in the NICU (7.5 months total hospitalized in his first year).  He started crawling at 18 months old.  A really big milestone is he has just started getting breaks from his continuous oxygen to help him breathe.  A few hours a day he gets to roam without a cord holding him back.  For eating, he’s recently had a surge, so he’s now taking 20-30% (versus the 0% two months ago) of his calories orally.  The rest of his nutrition comes through a button he had surgically placed in his stomach.  These things may not sound like much, but you would only think that if you didn’t see where we started.  Since Owen, I’m no longer afraid to hold him down for uncomfortable procedures.  Now, I actually am performing some of those procedures.  Just last night my husband held him down as I replaced the feeding tube in his stomach.

So no, I don’t understand what a 39-41 week pregnancy feels like.  I’ll admit; it looks pretty uncomfortable.  However, I so wish I did know what it was like to have a healthy baby.  From my perspective of having two babies born not healthy, I can’t imagine anything that would make me want my healthy pregnancy to end early.

Some women think, “But, I’m 37 weeks, that’s not preterm.”  My response is, “Are you really 37 weeks, or is that an estimate of your due date?  Due dates can be off by as much as two weeks.  What if you’re really only 35 weeks?  At 35 weeks, you’re likely looking at a Kellen scenario…best case.”

I can’t relate to a full term pregnancy, however, I can relate to the desire to have the absolute best for your baby.  I can also share that the emotional pain of having a baby born too soon is beyond any physical pain I can imagine.  Unlike the aches and inconveniences of pregnancy and the pain of labor, having a baby that’s born fighting to live is a hurt that you never forget.  I don’t know a preemie mom who doesn’t struggle with guilt, anger, helplessness and jealousy.  Most of all we suffer daily a deep and profound sadness that we didn’t get those last weeks of pregnancy.

Some think that a late-term preemie is not that bad.

My boys were born at different ends of the prematurity spectrum. As different as their journeys are, I can say this:  It doesn’t matter if your child is a micro preemie or late term preemie, it still hurts.  I’d give anything for an extra day, week or month(s) to either of their pregnancies.  I’d give anything for any amount of time to better their odds of living and then thriving; any amount of time to not have to take the long and lonely wheelchair ride out of the hospital while my baby waited in the NICU; any amount of time to not have to ask to hold my baby…and be told “no.”

Any amount of time to have a healthy baby.

What I really want to say to all expecting parent is this; if you’re starting to think you can’t possibly get any more uncomfortable and swollen or that your due date doesn’t work well for your calendar, I cheer you on, and plead with you to waddle through to 39 weeks!  Feel free to complain (just maybe not to a preemie mom), and pat your swollen belly, and know that this won’t be the last time parenting is uncomfortable.  Most importantly, know that it’s a miracle inside of you and that he (or she) is worth it!  Both of you, mother and child, deserve a healthy baby with the very best chances.

Please!  Please!  Healthy babies are worth the wait.

March of Dimes wants to know your thoughts on Healthy Babies are Worth the Wait.  Please join them (and me) for a Twitter chat at 12:30 CST today.  Look for #39weeksmn.  Never done a Twitter chat?  Well, neither have I.  Here is a great tutorial.  If you can’t join the chat, please leave any comments on this post.

Whether you’re joining the chat or not, please pin, tweet, post or share this great infographic that MOD created for the Healthy Babies are Worth the Wait campaign.

Also, if you haven’t signed the petition to light the White House purple on January 3 to honor the 75th anniversary of President Roosevelt founding the March of Dimes, please sign now at http://1.usa.gov/XjOakw. It’s a quick two-step process — provide your name and email, then click on the link that’s emailed back to you and sign the petition.  It’s a simple and free way to give hope for preemie families.  

And, a note of thanks to two friends who took the time to help me edit this post.  Kar and Will, I appreciate you greatly!