Tag Archives: University of Minnesota Amplatz Children’s Hospital
Collateral Damage

Collateral Damage

I had an opportunity to be in Boston a few days ago – and to visit Children’s Hospital Boston.  A fellow Minnesota family is there right now with their 8 month old baby girl, recovering (beautifully) from a heart surgery at the hands of Eve’s surgeon, Dr. del Nido (their cardiologist at the University of Minnesota Amplatz Children’s Hospital is also ours, Dr. Kochilas.)  Baby Maddy’s room was two doors down from our old room – 8E, right across from the nurses station.  It all came flooding back.

It was 3 years ago this week that my husband and I flew our 3.5 month old baby from Minnesota to Boston to fix her heart.  She had just a couple weeks left to live.  I don’t remember being anxious or afraid. I remember being confident.  We were doing the right thing. She was going to come home with us and grow up to be a happy, healthy girl.  Somehow I knew this to be true.

I’ve told people many times since, that it was our mission at that time to never bring fear or pain into Eve’s ecosystem.  No matter how tired, discouraged or nervous we were along her difficult newborn journey – we were always positive and upbeat around her hospital bed.  Always.

There was always a scarf in her little isolette that smelled like mommy or daddy.  We must have recited Brown Bear, Brown Bear a thousand times.  We played the Disney Lullabies CD over and over.  And that musical seahorse.  I still wake up hearing that sometimes…

Even during pokes and painful procedures, we would just tell her how we were sorry, but that she was so very brave and strong. She needed us.  That is certain.

Sometime when we took a walk outside her room, it was all we could do to stand.  There’s no way to explain this type of sheer exhaustion unless you’ve been there.  We needed others – to lean on when we left her room.  Our hearts shine from the friendships we have gained because of Eve and her broken heart.  For every lost friend (unfortunately there were some), we have gained 10 new ones.

One of the great human tragedies of pediatric disease is the loss of friends, family, support systems. Again, no one can understand unless they have been through it. Nearly every day, I hear a heartbreaking story of how a best friend never came to visit the hospital.  How parents, brothers, sisters…and yes, even spouses, just bail. Sick infants are not the things of story books and fairy tales.  Tubes, wires, monitors, cuts, stitches, blood.  Congenital heart disease is an abomination.  No child should have it.  Period.

But until the day when children suffer disease no more, reach into your soul to BE THERE for those you know going through a traumatic health experience with their child.  BE THERE for those you barely know.  And BE THERE for those you don’t know. Suck. It. Up.

Eve is 3 now. She is the happy little girl I promised her she would become.  And someday soon, I hope we can share her amazing story with her – and teach her one of the most valuable word in the human vocabulary: compassion.

Rockstar Epiphany

Rockstar Epiphany

In this first year of Eve’s life, we have come to this epiphany.  In our daughter’s cardiologist, we found medical nirvana.  He has been smart, savvy, pigheaded (as needed), caring, proactive, collaborative.  Many days, we would see this man at 7 am – and again at 7 pm.  If we emailed or called or paged at 11 pm, we’d still get an immediate response.

Most importantly, it seemed like he treated our baby as he would treat his own child.  I never asked if that’s how HE really felt (that would be weird…), but it’s how he made US feel.

That is a very special gift.  Not every pediatric physician possesses it.  That’s why it’s so special to see glimpses of that pervasive caring as people name their 1in100 Rockstars http://1in100.org/rockstars/.

I will say this.  When it was time to schedule surgery, Eve’s heart only had a few weeks left.  The team at our hospital was outstanding.  And that’s why we were able to bring Eve to another hospital 2,000 miles away.  Because in their caring, compassionate, collaborative way – they knew Eve’s case was unique.  And that she was in the best hands with one of their peers.

Accolades aren’t enough.  That takes not only special doctors, but a special hospital.  Just this week, I wrote a letter to the University of Minnesota Amplatz Children’s Hospital.  We never formally acknowledged the amazing, selfless decisions that allowed our baby to live and thrive.  I hope they know how important this is.  That they are the model for how hospitals can, should and WILL be practicing in years to come. I might add that the doctors we’ve come to know during this journey are still committed allies.  Now joining together to tackle such challenges as universal pulse oximetry screening, pediatric heart device development and real-time clinical information exchange for the youngest patients.

When it comes to saving and protecting lives, there should be no hospital borders, no state borders, no country borders.  The medical community is just that – a community.  Neighbors, keep helping each other.  That’s what makes a Rockstar.

All About Eve…

All About Eve…

On this day last year, I finally was able to talk about Eve.  I sent my first message to friends and co-workers since Eve’s delivery on December 12, 2008.

“Sorry to have missed you all over the holidays….and that it has taken me a while to write this email.

Eve Isley Saarinen was born the evening of Friday, the 12th  – 6 lbs, 9 oz, 20 inches….and lots of beautiful dark hair.

At 2 days old, Eve was diagnosed with congenital heart disease. It’s a broad category.  Her biggest problem is a severely leaking mitral valve, which puts strain on the whole heart function, enlarging the heart and putting pressure and excess fluid on the respiratory system.  She was transported by Lifelink to the University of Minnesota NICU on the 14th.  Paul drove through the blizzard that night to be at her side, but since I had a c-section I could not be discharged until the next day.  Took a cab over there on the 15th and we hunkered down for the next 5 days.  The medications seemed to be working at first, but within a couple days her heart was continuing to get larger, her breathing more labored.  After an episode of SVT – which is basically super-fast heart arrhythmia, she was immediately transported to the U of M Children’s Hospital pediatric intensive care unit – closer to the full time cardiology staff and cardiac surgeon.

She was immediately started on a new, stronger drug to alleviate some of the pressure and workload on her heart.  We were warned that her situation was precarious.  The surgeon and team spoke to us of a possible transplant (her heart had already been greatly damaged by her defect and the tachycardia).  Yet with all this, she has started to turn a corner and improve.

With only a couple setbacks, Eve has been getting stronger every day.  It is slow progress – and it’s hard to be patient.   We don’t know how long we’ll be here as the medicines do their work…though they seem to be stabilizing her.

The tentative plan is to get her bigger and stronger for a heart surgery at about 3 months old.

There are very sick children all around us here.  It’s the holiday season and there shouldn’t be any sick children.  Anywhere.  So we pray for all these babies and continue to be grateful for how well Eve has been doing.

Blessings to all of you in the new year – cherish your new arrivals.  They are the greatest gifts.  We’ll do our best to keep you posted (Paul’s Eve blog updates can be found at:  www.tweetandmeet.com)

Annamarie, Paul, Jack, Elle and baby Eve”

I can tell you writing about this today – as I try to finally get the 1in100.org website up and running – nearly brought me to my knees.  Those days were a fog.  A never-ending series of rounds, drugs, dozens of nurses, sleeping on floors, praying and praying some more.  We wouldn’t see our other children for days on end, for fear of what might happen if we left Eve’s side.

None of this is news to heart families.  They’ve seen it.  Lived it.  And then some.

The blessing of Eve is her journey.  I can honestly say that I would not be doing any of this if we’d lost her.  The pain would be too intense.

But today – one year after Santa actually cried at her bedside – we are mobilizing.  We give thanks for our gifts and will never, never forget that each day thousands of families are living it.  It is with the greatest honor to those comrades in arms that I make my first official 1in100 post.  Know more.  Do more.  #1in100.