Those Sneaky Birthdays

Considering the fact that it seemed Spring would never come, I’m not really sure how it is suddenly April 21st – but here it is…Owen’s Birthday!

The truth is, it’s been so busy that I’ve not even had time to ponder what this birthday means to me.  It’s the first birthday for Owen that is about Owen…not about how his birthday makes me feel.  And what a year to celebrate…what a THREE years to celebrate.
Owen just after birth

 

April 21, 2011:  Born at 5:18 AM at 800 grams.  He made a small cry and had APGARS of 6, 7 & 8.  We were told that white males born at his gestation and weight had less than 50% chance of survival and if he survived, he had an 80% chance of a long-term impairment.

 

 

 

 

April 21, 2012:  In the PICU, on Bi-Pap with a rate.  Owen’s 224th day in the hospital that year.  He had no voice – not even when he cried, could barely support his own head and was just starting to willingly put weight on his arms and legs.  Breathing was the constant worry, but there weren’t many patients who could better flirt with the nurses.

 

 

birthday2

 

 

April 21, 2013:  Finally a party!  If the first year was about surviving, the second year was about therapy.  3-5 therapy sessions per week and things were starting to click, he was walking behind carts, started using a handful of words and had started weaning off his oxygen.

 
birthday3

 

 

 

 

April 21, 2014:  A full head of hair, a full mouth of (yellow) teeth, a vocabulary fit for a 2.5 year old, been walking for 6 months and haven’t had a whiff of oxygen in 10 months…oh, and NO hospital overnights.

 

 

 

Do I wish that Owen had a July or August birthday?  Well, I imagine it would have been an easier last three years if he did, but this year, I can’t really feel the need to acknowledge the bitter part of April 21st. Starting this year, it’s just a really sweet day that was the beginning of life with a rascal.

Happy Birthday, Owen!  You are amazing.  You are an inspiration.  You are THREE!

Posts of 2013 Every Preemie Parent Should Read

Last year I shared the list of posts from around the blogger community that moved me the most.  There are many, many fabulous posts, these are just the ones that for me, I remembered all year.  These are the posts when I get down, that I know will help lift me up.  I hope they do the same for you.  Read and enjoy and if you love the posts, leave a note for the blogger thanking them for being brave enough to share.

When you need to hear, “I get it” through all of this:

Words for Micropreemie Parents by Becca Wood for Cheering on Charlie

When you wonder what your preemie is going to think of all of this:

An Interview with My Preemie by Kasey Matthews for Preemie Babies 101

When you wonder what the siblings are going to think of all of this:

An Interview with a Preemie Sibling by Kasey Matthews for Preemie Babies 101

When it feels like moms and dads deal with all of this differently:

The Challenges of Being a NICU Dad by Dr. Sue Hall, MD for Papa’s of Preemies

When you need a reminder to find the good in all of this:

The Gift of Disability by K for Transcending CP

When the guilt of all of this is overwhelming you:

Dear Me:  A Letter to Myself by MrBoosMum for Premmeditations

When you need a reminder that even through all of this, you’re just a mom:

 (Micro) Preemie’s Mother Day by P for Handpicked Miracle

When you need a reminder that most doctors are on your side through all of this:

End of Life at Birth by Dr Keith J Barrington for Neonatal Research

When you are missing your friends through all of this:

Friendships After the NICU by Jessi Bennion for Life with Jack

When you’re trying to make sense of all this for your child:

To My Child with Special Needs by Tatum Marinkovich for Ain’t No Roller Coaster

If you have a blog post (written by you or someone else) that you want others to see, please feel free to share in the comments.

preemie posts 2013

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An End to Our Eczema Battle…and it’s an Alcohol Free Hand Sanitizer Too

Most people are polite enough to not mention it.  Doctors are not most people.  Owen sees 7 specialists, each 3-5 times a year.  I’ve heard it a lot these last couple of months.

“Whoa, his skin is so clear!”

Up until a few months ago, this is what Owen’s hands looked like.

eczema before

Can I tell you how horribly stressful eczema is?  We had cream after salve after steroid after lotion after homeopathic oil.  I would go to the store and buy a bottle of everything in the section, and nothing worked.  We had to stop food trials because we couldn’t get his skin to a good enough baseline to know if he was having allergic reactions to foods.  Every night we gave Owen Benedryl so he had a chance of sleeping through the night.  If he woke up it was because he was crying from itching himself bloody.  “Itchy Itchy” was one of Owen’s first 10 words.  We had our duct work cleaned, the carpets cleaned, switched detergents, stopped using dryer sheets, only dressed him in cotton… you name it, we tried it. I hesitated going to the Dermatologist because I knew she would just suggest more (and stronger) steroids…and she did.

And then in July, I applied for a job and listened to the CEO of a start up tell me about the alcohol free hand sanitizer his company was launching.  Let’s be honest, I’m a preemie mom… he had me at ‘hand sanitizer’.  However, as I learned more about the natural healing and non-stinging properties of the active ingredient, Hypochlorous, I had one thought.  A hand sanitizer that I can use on Owen!

I’ve never used alcohol hand sanitizers on Owen because he’s so young and puts his hands in his mouth…and well, it is alcohol (120+ proof, by the way).  Even if their wasn’t the toxicity of alcohol to worry about, I don’t like using alcohol hand sanitizers when I have a hang nail, can you imagine what it’d feel like on tiny hands that are nearly entirely open wounds like Owen’s were?  With the reality that there was a hand sanitizer that I could use on Owen, the company probably could have gotten me to work for free (if you’re reading this CleanSmart team, I’m just kidding!)

Needless to say, I got the job and immediately took product home.  I had a small cut on my hand so I sprayed it on…it didn’t hurt.  So I held my breath and put a small squirt on Owen, he didn’t cry!  Finally, I had an option besides wipes when we were out of the house without access to soap and water.  To my surprise, I started to notice another benefit to CleanSmart hand sanitizer, Owen’s hands started to heal.  Within a week, his teachers asked me what we were doing differently.  Within two weeks, his hands looked like this.Eczema after

Since August, I have not put a steroid cream on Owen’s hands.  He no longer wakes up crying from itching, he doesn’t get Benedryl at bed time and “itchy, itchy” is a phrase I never hear him say.  We’ve been able to reinstate feeding therapy and food trials and this weekend Owen swallowed TWO Gluten Free mac and cheese noodles.

I realize I work for the company and it could seem like I’m blowing smoke, but guys, I cannot tell you how much CleanSmart Alcohol Free hand sanitizers have improved the quality of Owen’s day to day life.  No more pain and constant itching.

I may work for the company, but I’m a mom first and I wanted a doctor’s agreement to this treatment, so when we went to the Dermatologist I brought the product.  She felt it made a ton of sense that CleanSmart hand sanitizer is working for him.  As a matter of fact, there are newer-to-the-market prescription products for eczema that use hypochlorous as one of the natural ingredients.  In her opinion, the reason it works is that it’s killing the germs.  When your skin is dry and you irritate it by itching it, your skin is highly susceptible to bacterial infections, like staph.  The infection worsens the eczema and becomes a vicious cycle…you can’t moisten the skin because you don’t put lotion on open wounds, and you can’t stop itching because there is an open wound.  CleanSmart, in her opinion, killed the germs which allowed his skin to heal.  And it killed the germs without the use of any antibiotics.  Once the infection was gone, and the wound was healed, we moisturized with an over the counter lotion (Cerave is what our Dermatologist recommends) and his hands have stayed healthy.  Occassionally he’ll itch and get a small flare up.  I treat any red areas with CleanSmart and the discomfort is gone within a day.

CleanSmart Alcohol Free Hand Sanitizer

Since our success with CleanSmart treating Owen’s eczema, a woman who works for our agency tried it on her teen daughter’s eczema with very similar results.  Will it work for you?  I don’t know, we have a sample size of two, so far.  But, I am encouraged by the doctor’s belief in the efficacy of CleanSmart hand sanitizer and that there are prescription products that use the same active ingredient.  What I really love is that unlike the eczema aisle at the grocery store, it’s a pretty inexpensive product to try (starts at $2.50) and the product is 100% kid safe – pediatrician approved, dermatologist approved (and that’s a real test, not just one doctor saying so) and it’s hypoallergenic…oh, yeah, and did I mention it’s a preemie mom’s number one must-have – a hand sanitizer that kills 99.9% of germs.

I’ll admit, I thought long and hard before sharing this post.  I want to keep my work life and my blog life separate.  However, if there is one more family out there that is dealing with the pain of eczema like we did for two years and CleanSmart could help, then I felt I needed to share.

If you’d like to try CleanSmart, I’m giving away one travel pack with both the 2 oz Gel and Spray Hand Sanitizers to one lucky winner.  CleanSmart is in select stores in Minnesota, and will be reaching other parts of the country over the next couple of months.  Until then, you can also purchase products at CleanSmartHome.com.

a Rafflecopter giveaway

I won’t talk more about CleanSmart on ANRC, but you can learn more at CleanSmart’s Website, Facebook or Twitter pages.

To see CleanSmart being produced, check out this feature video from WCCO news in Minneapolis.

Preemie Premonitions

I was standing in front of a room full of people, presenting my latest project at work.  I was wearing tan pants and I looked down to see bright red blood soaking through them.  I tried to turn my body, hoped that no one saw it and continued on.  As quickly as I could, without being obvious, I finished up and sat down in the back of the room as the meeting adjourned.  Sitting back on my tail bone, not wanting any more blood to soak through.  I was supposed to meet with a small team next, so I wrote to the organizer who was sitting next to me.

I can’t meet.  I have to go home.

 

She knew me pretty well – considering I’d only been at the company a couple of months.  She whispered back to me, asking what was wrong.  I tried to not respond, but she was insistent.  Finally, I wrote again.

I am pregnant and I’m bleeding.  A lot.

 

I could tell she instantly regretted asking.  I sat in the meeting, watching the final minutes of the meeting.  As soon as the meeting was out, I positioned my notebook in front of my waist and rushed to the bathroom.  This was the third week in a row that I’d had bleeding.  I was 7 weeks pregnant and had already had two ultrasounds.  I knew something wasn’t right with this pregnancy.  As I observed the amount of blood and saw how much worse it was than the previous weeks, I tried to keep myself pulled together.  Untucking my shirt to cover my pants, and finding a pad to keep it from getting too much worse, I rushed to my desk and put on my coat.  My boss already knew I was pregnant, because I had to explain my pasts absences the two weeks prior.  I just simply said, “I need to go.”  He asked if I needed a ride.  I said no and was off.

I had already been to the doctor twice, so I knew the drill.  If I was miscarrying, they wouldn’t be able to stop it, so there was no point in going to the ER.  I went home and cried all night.  Kyle came home and held me.  I was positive there was no way I could still be pregnant with all the blood I was still losing.     I finally fell into a deep sleep, fatigued from all the crying.

As I slept, I dreamed in techno color.  In the dream, I was holding Kellen and we looked down at a baby.  A boy.  He was nearly bald, with fine golden hair, I couldn’t tell if it was red or blonde.  He looked much like Kellen had, but different.  His head shape was slightly different and there was something else.  I couldn’t put my finger on it – the baby was so still.  Something wasn’t right.  I had always felt he would come early, with the dream I knew he would…earlier than Kellen.

More than anything, I knew I was still pregnant.  I like to think I’m a rationale person and that a dream is just a dream, but I knew that dream meant something.  I was giddy on my way to the ultrasound the next morning.  I think Kyle thought I was crazy to be in such a good mood after being so certain I’d miscarried less than 8 hours before.  I nearly sang the words, “I’m still pregnant.  It’s a boy and I saw him!”  and I proceeded to describe the future Owen to Kyle.

As happy as it made me in the moment, that dream haunted me for the next 17 weeks of my pregnancy.  There was something wrong.  What was wrong?  I kept replaying the dream in my head, watching him to see if he was breathing.  I knew he would be born, but I wasn’t really sure if he was alive.

Only a few months later, I stood over Owen’s NICU bed with Kellen in my arms and I realized I was living the moment my dream predicted.  The dream left out the ventilator and myriad of cords, but there lay a very still baby Owen while I faked calm for Kellen – searching for signs to see if he’d live.

I’m not sure of the purpose of that dream; if it was a warning or a way for my brain to start working on the unimaginable events to come, or just an odd coincidence, but it seems I’m not alone.  I’ve heard of so many others who had premonitions…did you?  What did the premonition mean to you and how do you think doctors and patients should differentiate between normal pregnancy jitters and true intuition?

A Micro Preemie Journey: A Grandma’s Story

“Micro Preemie wasn’t part of our vocabulary.”  Admittedly, they were prepared for an earlier delivery, as is often the case for twins, and they even knew there was a chance of bed rest due to recent blood pressure increases but mostly on everyone’s mind at the regularly scheduled MFM visit at 23 weeks was that they were doubly excited for two girls.  All too quickly, the excitement shifted to fear.  The visit turned to an admittance due to preeclampsia diagnosis soon-turned HELLP syndrome.

For too many of ANRC’s readers, this shift from happy-go-lucky to heart-stopping fear is all too familiar.  However, this isn’t the story of the parents of the micro preemie.

This is the story of the grandparent.

Last month I had the pleasure of talking on the phone with one of ANRC’s regular readers, Marilyn, who agreed to share her story.  I asked her to share because prematurity doesn’t just emotionally impact the immediate family.  It also impacts the extended family and, often, most notably the grandparents.  I also asked Marilyn to share because, just like many people say to me, “I can’t imagine how you do it”.  I sometimes think that way about the grandparents’ version of this story.  Not only are they helpless to what’s happening to their grandchild.  The grandparent is also helpless to making it better for their own – adult – child.

Marilyn described it so well.  She happened to be with on that visit during the 23rd week that went horribly wrong.  She said, “I went into that mode – she’s scared.  As a mother, I was worried, but I had to stay calm.”  I haven’t met Marilyn in person, but I could tell from our phone conversation that she is a master of remaining calm on the surface.  At the same time, I could hear the fatigue in her voice as she shared that day with me.  “Indescribable,” was her word.  Sitting in that waiting room.  Making phone calls notifying friends and family of the turn of events.  HELLP is a very serious medical condition – Marilyn’s daughter’s life was in immediate risk.  At the same time her two granddaughters were coming into the world at just 23 weeks.  “You try to be happy and joyous, but at the same time, I have three loved ones in the ICU.”  Marilyn says she felt fear and anxiety more than immediate joy.

Unfortunately, on the same day when there should have been relief at her daughter’s recovery from HELLP and discharge from the ICU, one of the babies passed away.  “And then we were planning a funeral”.  The words Marilyn spoke were simple and straightforward.  However, the weight of them were enormous.  As I write this a month later, I can hear her say those words.  Her voice was even and clear, but I can feel the pain 1000 miles and a month away.

And just as suddenly, Marilyn’s tone changed, the pain was pushed aside and she was back to matter of fact.  There was still a surviving baby, who was only 15 oz at birth, and her grieving mother to worry about.  Marilyn didn’t have time to process what her family was going through.  She had to keep staying strong so she could help ease the burden.  Marilyn visited the hospital daily to support her daughter and also she helped with logistics to ease some of the pressure on the family.

After more than four months in the first NICU and failed extubation, the baby was transferred to a NICU 2 hours away where she stayed for another 5 months.  Marilyn’s daughter and husband needed to rely on her to manage more of their household needs.  She did the grocery shopping, took care of the cat and every night … waited for a phone call to hear how her daughter was doing.  Of course, Marilyn worried about her granddaughter, but she was also worried about her daughter.  She knew her daughter wasn’t eating or sleeping well.  The time away was especially hard on Marilyn, “[my daughter] was just recovering from this experience and I couldn’t be there to take care of her.”

As Marilyn described the helplessness of not being able to make things right for her daughter, I realized how much she truly understands the story of every preemie parent.  As parents we often feel like we’re supposed to come equipped with a magic power that makes everything okay in every situation.  When that ideal can’t be met, it’s excruciating.  We feel it as preemie parents and Marilyn proves it’s also felt as parents to preemie parents.

Also, like preemie parents, Marilyn admits that even though she has stayed strong to the outside world…and around her daughter… she reserves the right to meltdown with her husband.  Marilyn’s situation allows her to play a more physical role with helping her daughter, but she took special note that grandfathers are also deeply affected by the prematurity experience.  The emotional burden is shared by the entire family and Marilyn and her husband rely on each other as they both cope with that weight.

Now that her granddaughter has been home from the hospital for a year, Marilyn continues to play an active role in helping with day-to-day cares and errands.  At 19 months old, the baby has a trach and requires around the clock care.  When the nurse goes home, Marilyn does what she can to help.  With cold & flu season in full swing, Marilyn helps with grocery shopping and picking up medications at the pharmacy.  Things are improving, but there is still a lot of work to be done.

Marilyn’s pay off for the work that she’s done is the joy in watching her daughter love her own daughter.  Together they celebrate each milestone – signing “mommy” and “daddy”, knowing her body parts, cruising and walking with hand held assist.  Marilyn’s voice sang, as she talked about how well her granddaughter is doing.  While she admitted there is still crippling fears – especially tied to cold & flu season – she said she really tries to focus on how much fun her granddaughter is.

I love that the conclusion of our call was focused on the joys and loves of parenting and grandparenting.  Whether you’re parenting a typical child, a preemie or a parent of a preemie – it seems no matter how dark those darkest moments may be, it all comes back to joy and love.

Thank you, Marilyn and your family, for sharing your story.  You inspire me to be a better mom and to better appreciate our parents and all that they have done and felt through our own journey with prematurity.  I hope one day our paths will cross where I can give you a hug.   (Also, thank you for your patience as I took an unintended month off from blogging.)

Dealing with NICU Parent Survivor’s Guilt

I’ve struggled with the decision on writing about NICU survivors guilt because it always felt a little disrespectful to those that did lose a child in the NICU.  There is part of me that says, the loss of the child is the only emotion that deserves to be addressed.  But the feelings are there and I guess I need to say it out loud (in the written form) because I’ve never said it.  I have heard it once out loud, and it was really helpful to hear.  Now it’s my turn to say it, because maybe someone else needs to hear it.

The thing about the NICU that is most cruel is that there is no predicting who will go home and who will not.  The fact is the great majority do go home.  Still, way too many do not.

The only time I’ve ever had someone put the complexity of emotions that I felt around the loss of a NICU baby was the hospital chaplain when he stopped to see how Owen and I were doing the day after one of Owen’s roommates passed.  I brought up the baby’s loss and we both stared at the newly empty bed as he said, “it’s such a complex thing to deal with, being sad for their loss, for your loss…and especially one you got to know so well.  And then there is the reminder that it could have been you and the fear that it still could be you.  There is the guilt for thinking what you have going on is hard. You still have your baby.  And then there is guilt because you’re not really sure why it happened to them and not to you”

I wanted to be able to vehemently disagree.  Of course, I don’t feel all of that!  Guilt?  No, I can’t feel guilt that my son is alive.

In truth, I didn’t speak.  I didn’t have to because he said exactly what I was actively feeling and also the subconscious thoughts that I wished like hell I wasn’t thinking.  The only emotion that he missed saying was the relief that I had in someone saying so clearly what I was thinking…to kind of make it okay that I might feel guilty for their loss.

If you are reading this and you have lost a child and you’re thinking, “this is all very sick.”  I want you to know I feel that way too.   I’ve written about it a lot in my personal journal because, I wanted to understand it so I could move away from the icky feelings of guilt about this guilt.

The more I process it, I’ve come to the conclusion that guilt is the wrong word.  As I peel back the layers of feelings, what I’m starting to conclude is what I really feel is great confusion.  I think about looking around that NICU nursery and thinking, “How is it all decided?”  Who goes home and who doesn’t?  The randomness of one day a baby seems to be making great strides and the next day, they are gone.  That it seems your son is sicker, but somehow he’s still here and the other babies are not.

Why???

How is it decided??

Why do babies, children, loved children have to die?

I’m not really looking to turn this into a theological discussion.  My beliefs and your beliefs, whatever they may be, are valid and we all find our ways to cope with these questions.  But the fact is, for the most part, it seems it doesn’t matter what people’s beliefs, these questions seem to come out at some point.

I guess overtime the guilt has diminished.  I’m still confused – but at least I’m doing a better job of identifying the emotion as confusion and not guilt. For me, with time, “it’s just the way it is” is my way of beginning to hmmm…it’s not really accept….but acknowledge the reality of it maybe.  It has occurred and it is just the way it is and nothing will change it.  It still crops up but now it’s less in the form of beating myself up that my son is here and their son is not.  Now it’s more times when I stop and realize that I’m sad that there are babies missing from the picture.

We had a play date last week with NICU friends.  In a picture, we got three amazing boys who combined spent more than 22 months in the hospital and 6 years on oxygen/vent.  It was a joy to see how they are all thriving in their own ways.  As I looked I couldn’t help but also know that one of those boys had a twin sister that passed before birth and the other had two brothers who lived one and two days.  And then there was the other little boy who was in the hospital with these three and he passed away at 7.5 months.  Our picture of three…it should have been seven.

I missed them in the picture.  Those four…and many others…  I’m not sure why the three survivors are the three that survived.   It’s not really something I’m currently able to come to terms with, but I will remember each that didn’t survive and I will never stop celebrating those that did.

Each Parent Has His/Her Own Course Too

I’ve met several families who have had preemies with similarities to Owen’s course.  But I’ve never heard of a story exactly like his.  That’s not because Owen is some sort of special case, it’s because EVERY preemie is a special case.

There are no two preemies exactly alike.  The course of Ailyn does not predict Virginia or Charlie’s.  The course of Jack does not predict Owen’s or V’s or Boy Boo’s or Tucker H’s.  Not even twins, like Destroy & Search or T & K, who have the same parents and same length of time in the womb have the same course.

The same is also true for any type of special needs.  Kerry’s Cerebral Palsy is likely different from Max’s Cerebral Palsy.  Girl Boo’s undiagnosed special needs don’t look like Tucker C’s who has a kind of sort, maybe, not quite exactly, but a lot like diagnosis.

I know you know that every child – special or typical needs – has his/her own course.  It’s not always easy for us as parents, but as a whole, I feel like this community really does a great job of giving our kids permission to end up in different places.

Where I would argue we don’t give that same permission is with ourselves.

It’s an interesting perspective being a blogger who is really open with her emotions through all of this.  After two and a half years, our family is finally settling into some sort of groove.  We are forever changed, but we are getting to a place that is more about moving forward and hope and  joy and less about living in constant fear and simply thinking it’s a good day when all the meds and feedings were on time all while trying to figure why/how could this happen?.

Some families are wondering what took us so long to get here.  Others are wondering how we could be here so soon.  Just like our kids’ course and outcomes differ, the parent course and outcomes differ.   And it doesn’t have anything to do with the course of the child.  My husband, Kyle, and I have completely different perspectives on much of what happened.  We have the same two preemie children and each experience effected each of us differently.

Just because I went back and toured the NICU, doesn’t mean that I think everyone should.  In fact, my husband would probably rather do just about anything than to step foot beyond those doors again.  Just because I choose to believe that there wasn’t a reason for any of this happening and that it’s just what happened.  Doesn’t mean I don’t respect people who do feel this was part of God’s plan.  Just because writing a blog that details every negative and positive feeling I have had on this journey works for me, doesn’t mean it’ll work for everyone…notice, I don’t talk much about Kyle on this blog?  He knows it’s what I need and he respects that.  I know he wants to keep his path private and I respect that.  Same kids, same courses.  Different outcomes.  Both outcomes are okay.

Maybe I’m over thinking it, but I’ve received a few comments and private messages lately that made me think that my sharing where I am, made others feel bad about where they are.  No one has come across as angry at me for sharing what I’ve felt, but it has seemed a few times, they have been angry at themselves for not being in the same place that I am.  If you fall into that camp; I am sorry.  It is never my intention to make someone feel bad (unless you gave me crap about being asked to wash your hands in my home).  I do not think that my thoughts and experiences represent everyone.  I’m only sharing because 1) I have this inner need to share this experience.  I know no other way to try to make sense of it all  2)  I still find the time to share because if every once in a while it makes other people feel better about their own experience, it’s worth the effort.

Most of the readers of this blog are preemie or special needs families.  We are all brought together by what we have in common – beautiful kids that didn’t have the expected course.  I love having this group for that support and also want to remind everyone that your perspective is not the same as mine, or each others on every point.  That’s okay.  We can still join together to remember those who had much too short of courses, encourage those still on an unexpected course and support each other as we heal.

Just like our kids,we parents have our own course too.

PS – check out all the links to see more inspiring preemie and special needs stories.

Are We Lucky?

I’m not ready…and probably will never be ready to say, “it happened for a reason”.  To see your child in pain, fighting for their life.  I can’t think of many outcomes that makes me think my child…any child…should have to go through that existence as atonement (as some suggest) or as part of the process to get a good result.  I can’t say I’m a religious person, but I do believe in a higher power and in my personal belief, that higher power isn’t master planning terrible events to teach people a lesson.

My theory is we are an imperfect species and sometimes things, for a lack of a better term, malfunction.  In my pregnancies, my body malfunctioned.  Especially for Owen, the results of that malfunction was pretty horrific.  The physical pain and suffering that he had to go through – it was intense.  I can’t identify any “reason” that makes it okay.

But I do believe that I have a choice on how I respond.

Let’s be honest, a response is a moment in time.  Some days I respond really quite well.  Other days aren’t quite so exemplary.  In truth, there are days that getting out of bed seems like a super human feat.  On those days, my focus is what we all lost.  What we’ve been through, how our life has changed forever and that Owen never got a choice in any of this.

On my best days, I sit and wonder about the same events that can get me struggling to get out of bed, but instead of being overwhelmed with how hard it was, I am awed by how lucky we have been.

  • My symptoms of preterm labor were really mild.  In truth I called the on-call OB-GYN on a Saturday night at 10:00 because I had a gut feeling and the tiniest sliver of pink in my discharge.  The fact that we and the OB took my symptoms seriously meant that I received the steroid shots to help Owen’s lung development and when he came very quickly with no warning, we were in a hospital equipped to give him his best chances.  Lucky.
  • I went into the hospital at 24 weeks exactly.  Our hospital assumed Owen was viable.  Thankful.
  • The statistics we were given were grim.  For a white male at 24 weeks who was typical sized and received the steroid shots via mom,  he was given a 40% chance of survival and a 20% chance of having no long term issues.  Owen is a survivor. Blessed.  Owen has global delays, but he’s only 2.5 and he’s surpassed so many expectations.  Hopeful.
  • Complication on top of set back on top of “never seen that before”.  Owen pulled through it all.   Miracle.
  • Bilateral PVL with Cysts diagnosis.  The doctors didn’t give statistics but I scoured medical research papers and found them.  They weren’t pretty.  Nearly all had CP diagnoses and about half weren’t able to walk at three.  Owen’s tone continues to look good (CP not an expected label) and he’s taking a few steps here and there.  Odds-Defied.
  •   Minimal vocal sounds at 1-year old.  Turning into a little jabber jaws at 2.5.  Amazing.
  • 230 days in the hospital in his first 53 weeks of life.  Days in the hospital ever since?  Zero.  Mind-blowing.  (knock on wood)
  • Tears of fear and frustration for months.  Tears I’m wiping away as I write this post.  Joy.

This smile while dressed in scrubs in homage to NICU nurses on Neonatal Nurses Day on Sunday.  Serendipity.

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I don’t expect my response to be perfect to all of this.  I accept bad days.  Not bad days that Owen and Kellen need to see…but bad days that I need to give myself.  After all, I am human – an imperfect species – and I do malfunction sometimes.  I am also lucky and blessed and thankful and incredibly grateful for all the “what ifs” that have turned out in our favor.

I won’t accept that it happened for a reason.  I’d rather it not have happened at all, but it did and in many, many ways we were so very lucky.

In My Defense: Why it May Seem I’m too Harsh

I hear it quite a bit.  Normally people are very nice about it.  “You know, most of the people really are well meaning,” they say.  Or more often than not, it’s a comment on this site or somewhere in social media guiding me to be more patient with those who are trying to support me with the words that just stung so badly.

Let’s be honest, this blog is full of posts … especially the most popular posts… filled with “Please don’t say this about my child / my experience” type posts.  The top five shared posts on this blog all fit in that category: “Don’t tell me to get over it“, “Don’t tell me most of these kids catch up“, “Just wash your hands and don’t argue with me about it“, “Never, ever tell me it’s good for my child to get sick” and “Even if you are a preemie parent, don’t assume we hurt exactly the same“.

Some days I look at that list of most popular posts, and even I think, “Tatum, you are a complete rag.  Lighten up.  Don’t be so sensitive.”  And then I’ll go back and read those posts and I think…harsh or not, it’s really how I feel.  The fact that they are very well read posts, tells me it’s also how many others feel.   So, I wondered…why?  Why am I, and seemingly many other preemie parents, so sensitive.

I can’t answer for the universe of preemie parents…but after some reflection, I can answer for myself.  Each and every single one of them comes back to one thing…

I desperately want people to ACCEPT Owen…me…our family and this situation.

I want people to accept that our situation is different.  I want people to accept that we make the decisions/requests that we do, not because I’m psycho-mom, but because our situation IS different.

The reason that acceptance is so important to me – the reason that I struggle to let it go and the reason that I sometimes get a really feisty about it is that I want people to…and I really fear they won’t…accept Owen, not just today, but also for whomever he becomes.

Every time someone tells me that it’s okay for my child to get sick, or that I’m too over zealous on hand washing and vaccinations, or that their situation is exactly like ours, or that I just need to move on because these kids all grow out of their issues…those comments tell me that people don’t accept where we are today.  And if they don’t accept where we are with a cute, smiley little toddler (who looks “normal” but still has significant needs)…If they can’t accept this boy, then what about the future young man?  When he’s a pimply faced teenager, or maybe a somewhat awkward adult, or he can’t run as fast as the other kids or eat what the other kids are eating … will he be accepted then?

When it matters to him.  When Owen’s happiness can be impacted by other’s thoughts about him…then will they accept him?  Because clearly, his situation…the realities of it…they aren’t accepted today.

I accept that Owen will very likely have life-long differences.  I don’t write those words because I have given up hope – we absolutely will continue to push Owen to be the best Owen he can be and the fact is, I think that Owen is, and will be, amazing.  I write those words because I ACCEPT it.  Because I ACCEPT Owen…with whatever his difference(s) turn out to be…he will be okay.  Maybe not everyone’s definition of okay, but my definition of okay and hopefully, his definition of okay.  I don’t just love him…I accept him.  I want other’s to accept him too.

My biggest hope and dream for both of my sons is that we are able to give each the resources and support to find their own version of amazing and for whatever that version is, he feels accepted.  That’s what every parent wants, right?  Our kids to be accepted – and ultimately, to accept themselves?

So yes, I know, I can be a rag who is sometimes a little harsh towards people who probably didn’t mean harm with their words or actions.  I promise, I will continue to attempt to accept that sometimes, a lack of understanding isn’t a lack of caring.  At the same time, I ask that when you hear that mama bear in me roar that you realize behind it is simply a mom who desperately wants her family…especially her children…to be accepted.

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Photo shared with permission. All rights reserved, Pichette Photography, LLC.

The Truth About Prematurity

If you took a poll of the number one pet peeve of preemie moms (and dads), I bet “hearing women complaining about those last weeks of pregnancy” would be really high up there.

Personally, my gut reaction when I hear someone complain is, “I would take any…A-N-Y!!!…amount of pain and discomfort to not have had my kids in the NICU”. I also think about my friends who struggle with infertility and how they must hate to hear people complaining about the one thing, they so wish they could have.

At the same time, I try to be reasonable. In some ways, it feels like it should be a God-given right to complain a little when you’re pregnant. I do get it. Okay, well not fully, both of my kids were preemies. However, I remember being 34 weeks pregnant and thinking, “wow, I’m going to get 6-weeks-more uncomfortable than this?” It’s no secret. The last weeks of a full term pregnancy are a mess of raging hormones, fluid retention, heart burn, Braxton hicks and real contractions, stretched, itchy belly skin, bladder/rib/back pain, you can’t see your feet and even if you could, your shoes don’t fit and then there are the, very embarrassing, things that your body is doing.

It really is conflicting for me, because I know these moms are not hoping their kids will be born sick. At the same time, I know that too many people don’t understand the importance of those last weeks of pregnancy. They don’t imagine feeding tubes shoved down the baby’s nose and IVs sticking out his head. When they say they are, “over being pregnant”, they don’t mean they would rather have the baby and leave him at the hospital until he is ready to come home. Maybe these moms haven’t seen data, like shown in this 2010 CNN Article, that states that at 34 weeks the risk of respiratory distress increases 40 (FOURTY!) times. Even at 37 weeks, there is a 3 times greater risk for respiratory distress than those who are born at 39-40 weeks.

I’ve really worked on removing the emotion and instead, sharing support for those moms nearing the end of a full-term pregnancy. I focus on not taking it personally, but also consider myself an advocate for premature babies and their parents, so I can’t ignore the statement either.

Here was my comment to someone who was having a frustrating pregnancy day yesterday:

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The comment that followed mine was by someone I do not know.  Nor, do I ever need to know.

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What the…?!  Is she endorsing late term prematurity because her kids are fine?

There are a lot of misconceptions about prematurity, so I wouldn’t be surprised to see something like, “my friend has a preemie, he’s fine…” but this isn’t a “friend” situation.  This is a two-time preemie mom saying it’s no big deal to have a preemie.

I can’t stand cyber-wars and I had nothing nice to say, so I simply responded with,

You’re a very lucky lady, [her name here].

But, of course I stewed.  I’m not going to skewer the person who said these things.  That’s not fair, she’s not here to defend herself and I have no idea who she is.  However, I am going to say that her answer is the exact answer I expect to hear when I talk about prematurity to people.  No, I don’t normally hear it from other preemie moms, but the misconceptions for the general population are unreal!

Absolutely unreal!

I’ve had several commenters on ANRC tell me to not be so hard on people who seem to gloss over the risks for premature babies because it’s done with good intentions.  While I do understand that it’s good intentions and I am not a proponent of personally attacking someone for saying things like, “most of these kids turn out just fine,” I also believe in the importance of advocating for these children and their families by sharing the truth about prematurity.

I’ve had to learn…the hard way…the truth about prematurity.  I know what prematurity looks like in its best cases and what it looks like in the worst cases.

I have a brother who was a preemie and a mother who has struggled with the guilt that she felt for his early birth.  My earliest childhood stories were about my mom going into labor with me at 31 weeks, but in my case, they were able to stop her labor and she was on bedrest for 6 more weeks.  I can see the vast differences in my childhood and adult life versus my brother’s…much of that due to me being lucky enough to have been born after he and so my mom was watched much closer.

I understand the deafening silence as you wait to hear your 34 weeker cry.  I have felt the frustration of being a mother, but not being able to decide when you can and cannot hold or care for your child.  I’ve lived the loneliness of leaving the hospital while my child stayed.  I have a reoccurring nightmare about someone attempting to shove a drinking straw down my nose as I try to process what it must have been like for my boys to have nasal feeding tubes.  I have cried for babies that died in the bed next to my son.  I’ve dealt with parent survivors guilt and the random nature of who does and who does not go home from the NICU.  I’ve been secretly jealous of how well another preemie is doing, and then later I’ve learned they are diagnosed with epilepsy or cerebral palsy or asthma or autism or ADHD.

But, in case you’re thinking that I’m just an over-sensitive preemie mom, don’t take my word for it, here are the truths about prematurity from the experts; March of Dimes (MOD), Mayo Clinic (Mayo) and Center for Disease Control and Prevention (CDC).  Links are provided with first fact from each resource.

The truth about prematurity is the risks are real. 

The truth about prematurity is it is a national and global crisis. 

  • 1 in 9 babies born in the United States is born too soon (MOD).
  • Worldwide, 15 million babies are born prematurely each year (MOD).
  • Pre-term birth costs the US health care system $26 Billion Annually (CDC)

The truth about prematurity is it often does not end when the baby goes home or when they turn two, or any other magical number. (Mayo)

  •  Premature children are more likely to have imparied cognitive skills and learning disabilities.
  • Preemies, especially those born before 30 weeks, may develop retinopathy of prematurity (ROP) which leads to 400-600 legally blind infants annually in the U. S.
  • Premature babies are at increased risk of some degree of hearing loss.
  • Children who experienced premature birth are more likely than full-term infants to have certain behavioral and psychological problems, such as attention deficit hyperactivity disorder, depression or generalized anxiety, and difficulties interacting with kids their own age.
  • Premature children are more likely to have chronic health issues including; Infections, asthma and feeding problems.
  • Premature infants are at increased risk of sudden infant death syndrome (SIDS).
  • For some premature babies, difficulties may not appear until later in childhood or even adulthood.

The truth about prematurity is, not enough people understand the truth about prematurity.

I will not spend any more of my energy stewing over an unfortunate comment on Facebook, but I will continue to advocate.  I will continue to correct people when they say, “most of these kids turn out fine” or, “it’s okay if the baby is a little early”. I will continue to wish friends a comfortable end of pregnancy, rather than a too soon end of pregnancy.

Sometimes I may seem annoyingly repetitive, or overly angry but I will not stop sharing the truth about prematurity.

Healthy babies are ABSOLUTELY worth the wait.