In Summary

The journey isn’t over, it’s not any more or less of a roller coaster and unless weekly belly X-rays, g-tubes, visits to the neurologists (and 7-8 other specialists), and mild Cerebral Palsy labels are “normal”, we are still far from typical.

However, this is our life.  it is our normal.  It’s our version of life and I won’t just say I accept it.  I embrace this life.  It’s mine.  It’s ours.  it’s been excruciating and it’s been amazing.

On the journey, so far, I’ve been in denial, I’ve held onto guilt, I’ve been really pissed off, I’ve accepted, I’ve realized I’m blessed, I’ve forgiven others…and, most importantly, I’m forgiving myself.  There has been no miracle cure.  There has only been dedication to getting through the worst of it.  I’ve had an amazing teacher in a little boy who was born too small.  One who has not let prematurity define him…and so why should I let it define me?

Instead, today, I need to start living.  I need to start moving forward and giving an example to my boys that sometimes we get derailed, sometimes we take steps backward,  but in the big picture, dear Kellen and Owen, please know, we never stop moving forward.

This isn’t an end of the journey, this isn’t the end of our life with prematurity, but it is the end of a chapter. The next chapter may be private, it may be in public of another space, I’m not 100% sure.  I just know that ANRC has met all its goals.

It’s one of the few blogs that made it okay to say “this sucks”.  It was honest, it connected…and without meaning to, I’ve been told, it inspired.  I can’t tell you how humbling it was to know that this space has inspired others and in turn I/we have been inspired too.

I won’t fully say goodbye, the site will stay up (but no more new posts), the ANRC Facebook page and my email will all stay active.  ANRC will continue to be housed here as a journal that captured my truths as one mom dealing with prematurity and special needs.

I was recently asked, “Tatum, don’t you wish you would have known three years ago how well Owen would be doing today?”  I replied…”I’m not sure that three years ago my definition of doing well would have been MRIs, braces, feeding tubes, blended diets, chronic constipation, breathing treatments and “only” having 8 specialists because I refuse to go see the others…because who can see that many doctors?  However, that doesn’t mean that TODAY that I don’t understand and appreciate how amazingly well Owen is doing.  Three years ago this would have been daunting at best, today it’s just our really blessed life”

In truth, prematurity is a journey.  It doesn’t end at 2 or 3 or any other magical age and it is nothing like a roller coaster….but it is a beautiful journey and I’m honored to have been one of the people who, for a time, has helped share that beauty.

ANRC OT

Thank you for reading, thank you for connecting and, thank you for allowing me to understand the strength in vulnerability.  Without you, I’m not sure I’d so fully realize, that it really does turn out okay.
Xoxo,
Tatum

 

Doing it All or Doing Nothing at All

Herlife Magazine, Twin Cities.  Mayy 2014 Cover.  Photo by Chris McDuffie.  Hair & Makeup by Julie Swenson.

Herlife Magazine, Twin Cities, May 2014. Photo by Chris McDuffie. Hair & Makeup by Julie Swenson.

This month I’m featured by a local magazine, Herlife Magazine Twin Cities, as an example of a mom to a medically complex child who transitioned her new-found-passion into a more caring career.

I’ll admit, on Mother’s Day when I went to the spa and found myself on one of the magazines in the waiting room, it was pretty cool…and a little intimidating.  Whew!  I can’t tell you how many times I’ve heard variations of “you’re such a great mom!” in regards to this magazine feature.

To those who gave such high accolades, I give you a humble and sincere thank you.

And then there is that nagging part of my brain that screams, “am not. am not. am not!”  In truth, I often feel like I’m barely keeping it together.

This mom thing is hard.  This career person thing is hard too.  Throw in 2-6 doctors appointments – just for Owen (heaven forbid, I might go for an annual check up) – per month and there are a lot of days that I wonder if it’s even possible to be both.

Last week I sat on the floor for muffins and moms while wearing a pencil skirt business suit and 3″ heels.  As the festivities wrapped up, I ran out the door and drove (above the speed limit) 30 minutes across town and arrived 5 minutes before the start of our company’s board meeting at which I was one of the presenters.

Part of me was like, “see, I totally got this!”  The meeting went well, I made it on time and I didn’t miss out in participating in Kellen’s school program.  I can totally do it all.

A bigger part of me was sad.  The fact is, while I was running out the door, Kellen was tugging at my leg begging me to not go to work.  I also knew that I was l-u-c-k-y.  The Interstate 494 traffic gods were in my favor that day – very easily I could have been late, that’s one of the worse traffic stretches in our area.  That day, I did do it all – but it wasn’t without risk or cost.  And I still beat myself up about it.

Getting the balance right is a constant effort.  Some days the effort is so much that I just want to give up.  In truth, this winter…that Personal Polar Vortex was me giving up.  I emotionally stepped out of my life because doing it all is hard.  Honestly, I’m still working on staying emotionally present in my life.  The weather has warmed.  I’m doing so much better, but I’m still a work in process.

I haven’t shared my writing on ANRC lately – but I assure you, I’ve been writing.  I’ve been pushing to get to the root cause of my angst.  Do you know what I am starting to figure out for myself?  The saying is true, “I am my worst enemy”.  The more I pushed myself to get to the root cause of what I was feeling is that I felt like I was failing at everything.  I wasn’t the mom that I wanted to be.  I also wasn’t the worker that I wanted to be.  Those two summed into me not being the person that I wanted to be.

At the same time that I was coming to my personal realization, someone shared this post from Dr. Laura on Facebook.

 

Dr Laura, mom guilt

 

Now that’s perspective!

Basically, I spun myself into depression because I was afraid I was failing at doing it all…but when I put it into the perspective of the RESULT of what I am doing…

hugs

CleanSmart

Content from Herlife Magazine, May 2014, Twin Cities

it’s pretty clear that the only thing I’m failing at is being fair to myself.

I’ve said it before, and I’ll say it again…

Mom Guilt

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!

G-Tube Acceptance and our Experience with VitalStim

I’ve written a lot about the anxiety that I feel about Owen not eating.  I’ve tried to explain that he’s not just picky, I’ve vented about regression and I’ve given detailed summaries of what worked and didn’t work.

Owen turns 3 in 8 days (I know, I can’t believe it either) and he still doesn’t eat measurable amounts of food.  He puts things in mouth,  bites a piece off, chews and chews and then spits it out.  He asks for food, seems to enjoy the taste of food and even likes the sensory experience of it in his mouth, he’s even starting to express hunger.  He just won’t swallow.

He used to swallow, before what I call the “Pediasure debacle” and the suspected case of Eosinophilic Esophogitis (all described in excruciating detail in the link above).

In January, we started VitalStim Therapy.  VitalStim, in mom terms, uses electrodes to teach the muscles and the brain how to swallow.  It’s similar to how people who have paralysis will use electrodes to ride exercise bikes.  It doesn’t hurt – he is slowly transitioned into higher settings of electrodes.  As with all feeding therapy, the goal is for Owen to enjoy eating, so we keep him comfortable and often distract him with the iPad.  Here is a picture of Owen in feeding therapy with the electrodes in use.

20140411-084133.jpg

I had a lot of hope for Owen with VitalStim.  My expectations were probably unrealistic, but I kind of just thought since he used to like eating, if we could get this one piece solved for him that he’d jump right on board.

In reality, it’s been sssllllloooowwwww going.  First, Owen had several illnesses during cold and flu season that had him missing sessions.  The idea with the program is to be more intensive with 2-3 sessions a week.  Owen’s been averaging closer to 1 session a week.  The other thing is this is eating and eating just takes a long time to learn to do when you’re this old.

We’re definitely keeping up with therapy and keeping food fun.  I want Owen to eat and am going to provide the best environment to give him that chance.  But here’s the thing.

I AM DONE STRESSING ABOUT IT!

Owen is relatively healthy.  Other than some occasional constipation/diarrhea cycle issues, his gut is happy.  I no longer fear feeding him.  He’s a big boy.  37″ tall and 32 pounds.  He’s breathing on his own.  He’s walking on his own.  He’s talking in 4-5 word sentences.  Most importantly, he’s comfortable!  It’s taken 3 GI doctors and 18 months to finally get him back to comfortable.

We had a GI appointment today.  The doctor was realistic, he said that Owen’s allergies are going to complicate his ability to meet his caloric needs with a regular diet.  That’s not to say never.  It’s just to say, there is one more variable to overcome.  It’s never fun to hear of the roadblocks, but I do appreciate the candor and honestly.

He’s doing so well.  He can live a long healthy life with a g-tube.  I’ll keep trying to give him every chance to eat on his own and I’m never losing hope, but the truth is, if he always needs it, it’s okay…and it sure makes giving icky medicines a lot easier!

That’s my story and I’m stickin’ to it…at least as long as he needs a g-tube.

 

 

The Life of a Rascal

In my last post, I talked about how blessings can be exhausting.  That doesn’t make them any less of a blessing…if anything it’s the opposite in that blessings make the exhaustion a little more tolerable.

How hard is it to not find the joy in hearing a quiet voice talking to himself in the bathroom, “not very safe, Owen” as he’s doing this (Yes, I did have, do I grab the camera or not moment).

DSC_0361You might notice that there isn’t any toilet paper on that holder that’s being used as a step up to the sink.  That would be because half the roll is unwound in a pile on the floor.  It’d be half in the toilet and half on the floor, but I finally smartened up and got those toilet locks that I always thought only over-zealous parents used.  I now know that those toilet locks are important for over-zealous parents and parents of rascals who cannot be deterred from the toilet no matter what.  Let’s just say we’re down an ipod, several combs, toys and we’ve scrubbed many of toilet dunked hands.  Rascal.

Need more proof he’s becoming a rascal?

photo 1 (1) photo 2 (1) photo 4

Taking a rascal in public isn’t always a wise decision.  Late in January Owen and I were invited to speak at the Minneapolis/St. Paul March of Dimes kick off meeting.  Fortunately we were stuck in terrible traffic and we showed up for only the second half of the event.  Owen saw his picture on the tables and clearly thought he owned the place as he walked through all the tables and kept running out of the room yelling, “elevator, elevator!”  (He’s obsessed with elevators and has nearly sneaked off on one more than once.)  By the time it was my turn to present, I had completely forgotten what I was supposed to say and was out of breath from chasing him away from the elevator.

This weekend we’re going to give it a try again…only it’ll be on live TV.  (KSTP between 8:30-9:00 on Sunday, 3/23 for those of you who are local).  I’m already praying that Owen doesn’t come out with his still-favorite-word, “damn it”.  Aye-aye-aye, can you imagine?  The only upside that I can think is that maybe a video like that would go viral and the March of Dimes will get some extra donations.

As I said at the kick off meeting back in January (once I caught my breath), when it takes all the extra time and effort Owen has given to being able to become a rascal, well, it’s pretty hard to not cheer through the exhaustion.

Either way, wish me luck on Sunday, cause I’m going to need it with this rascal!

DSC_0359

 

 

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

Click image to Pin on Pinterest

When your non-verbal kid is suddenly verbal

When Owen was one, we still hadn’t really heard his voice.  His cry was a hiss, his laugh was a belly shake and beyond that we just heard lots of wheezes coming from his lungs.  He never babbled, imitated speech or made much sound at all.  I’m not going to lie, I was concerned that we’d never hear his voice.  Even when he did start to have the lung capacity for making some sound, he said very little.  He was 18 months before he truly babbled consonants and vowels and he did that sparingly.  Shortly after his second birthday, he started finding a few word.

 

Seemingly out of no where these last few months, Owen is suddenly a jabber jaws.  There isn’t a word he doesn’t try to say and he’s pretty vocal with his opinions too.  Last month, he had his NICU follow-up appointment that included a Bayley development screen.  Owen is still globally delayed, however, we learned that in the last year he has narrowed the gap compared to same aged peers.  Where did he score highest?  Language.  So high, that when correcting his age (which they did one last time) Owen was only 2 points from falling within the average range of a 26 month old.  In the last month, I’m guessing he closed that gap some more.

I love to hear him talk.  It seems no matter what the word, it’s cuter coming from his sweet – and still somewhat quiet – voice.  I’m also learning that all that time I assumed he didn’t understand me, he was listening.  For example, he just started talking, but he’s also already counting.  With very few mistakes, he gets into the low 20’s.  He’s also saying most of the alphabet and singing to his favorite songs.

He’s proving that non-verbal was no indication of his comprehension.  He clearly understood so much more than we ever gave him credit for…he heard everything…did I mention everything?

Owen has a new favorite word.  He uses it about 50 times a day.  I’m not exaggerating.  Some of the time it’s used appropriately, like when he drops a toy.  Other times, I think he just likes to say it.  I hear him tonight laying in bed saying it as he waits to fall asleep…clear as day…

“damn it, damn it, damn it”

Yes, guys, never underestimate your non-verbal kids because one day, they just may surprise you with a potty mouth.  I’m not going to lie…I’m pretty proud (and a little chagrin).

This kid is going places.

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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.)