PART THREE - My Very Own Miracle

(If you're just tuning in on this Thanksgiving Day, we are at the conclusion of our three-part mini-series story event.  Please read Part One and Part Two to catch up.  And check the sidebar for our special giveaway.  Leave a comment to be entered in the drawing.  Happy Thanksgiving!)

We questioned ourselves for days, even weeks, after making our decision as Penni looked more miserable than any human being should ever look.  Penni went through more in her three months in the NICU than anyone should ever have to endure. There were countless down days and harrowing moments as the incredible medical team at PCMC kept her going. You would not believe the amount of medical staff it takes to keep one little tiny baby alive – we are ETERNALLY grateful for their knowledge and dedication! 

Little Penelope made it through it all and is a relatively healthy, only slightly behind physically 3-year-old child. She shows no sign of the brain damage everyone was afraid of – again one in a million – a “true miracle” as her surgeon calls her. Penni is so funny and so stubborn and so SWEET. We are all so in love with her we can barely stand it. My 13-year-old speculated recently what our life would be without Penni – I’m glad we don’t have to know. I would probably be working again, I’d be stressed about the house, school, work, all the typical things – but with a giant hole in my spirit. 

Now I get lonely for grown up conversation and a little time to myself and with my husband. We also miss the second income and that is stressful of course. But would we trade it? Can you even believe I’m asking that question? We are VERY blessed, and yes, we’ve asked ourselves many questions over the past three years. But did we EVER think this kid is what we would end up with when we were all in the NICU 3 years ago? I have to say NO WAY. You may think we’re pessimists to not have any hope. But you had to be there, you had to see her, you had to be in the moment. My husband, as a neuroscience trauma nurse, knew what we could be in store for – I could only think of what was happening in the minute, it was all I could handle. We didn’t allow ourselves to think of a future with Penni. It wasn’t a reality we could see. But here it is. We’re stressed a lot here and there, but truly we feel like we WON THE LOTTERY OF LIFE! ☺

I don’t know what we did to deserve it really.

When I think again back to Thanksgiving 2005, I have to give props to this sometimes extremely misunderstood city, county and state we now live in (Salt Lake City, Utah). No matter what you think of Thanksgiving, it makes you wonder what really went down all those years ago when the pilgrims settled in to what was to become our country with all its glory and imperfections. No matter what you think of the state of our country and world today. No matter what you think of Utah and its influences. This Thanksgiving truly try to think of your own blessings in your own tight circle of living. I mentioned the props that my community here in Utah deserve – we TRULY, absolutely, could not have made it through those trying days and weeks in the NICU without the support of family AND community. We have no family in Utah, our parents all came to us (my in-laws’ RV parked in the driveway - my mom, dad and stepmom all staying in the house with us at the same time! For WEEKS!) – And guess what? It all worked – everyone was one in their desire to help us and in turn help little Penni. Our neighbors, Dave’s co-workers, folks from our Presbyterian church, did I mention our neighbors… I don’t have words for how they rallied to help us. 

I hate to say this… but sadly, we’re pretty sure this would not have happened in Los Angeles, not to this extent – we had meals EVERY night made for us by church folks and neighbors, some we didn’t even know! We finally had to move the meal schedule to every other night so the leftovers didn’t pile up! Penni was born in November 2005 and we had meals still coming to us in MARCH 2006! It was HUGE! Neighbors, Mormons, Presbyterians, whatever – they were amazing! And we are infinitely indebted to them! Meals, groceries, babysitting, driving, praying, emotional support – and talk about praying - there were prayer chains across the country working overtime sending such love toward Penni and us that we could feel it – it was so tangible and real – I mean, truly – AGAIN, what did we do to deserve it???

Bottom line, folks, right now I am a stay at home mom with a lot of really strange perspectives on the world, politics, the Obamas, Sarah Palin, Joe Six-Pack, the economy, war, schools, the health system, the prison system, drugs and alcohol, religion and faith, teenagers, sports, nature, family and motherhood and I’m willing to talk about most if not all of these topics at some point. But when it all is said and done, in the middle of this crazy world, at the exact center of my universe in my soul, spirit and heart – no matter my daily struggles and rants, I am tremendously and overwhelmingly THANKFUL for who I am and for what I’ve been given.

Do I have any idea what God, the world, life has in store for Penni, for me, for the rest of my family? No I don’t. We still have some obstacles to hurdle with Penni medically, she’s still quite fragile, but she appears to have a long life ahead of her and plenty of time to conquer EVERYTHING! We’re excited to be a part of this journey with her and are grateful that we have this wonderful little human being to give us immediate perspective. 

Ultimately, this is it. The heart of what being thankful is all about – life, love, family, friends and peace in daily life. I mean peace in a centered, semi-confident sort of way, even in the midst of chaos. What are we without these things? Let's be thankful we all don’t have to know. 

Love to every last one of you who read this, 

Happy Day of Thanks, 

Karen

(Karen and Penni's story in pics)

11-23-08 - Right after 2nd run of ECMO started - much much more swelling this time, miserable baby

11-28-05 - Dad says goodbye before Penni's surgery to repair hole in diaphragm - still on ECMO.

11-29-05 - No more ECMO, diaphragm repaired - orange thanksgiving bow

12-1-05 - Me "holding" Penni for first time while re-positioning

1-22-06 - Penni comes home from the hospital!

1-22-06 - Penni's big sisters finally get their hands on her!

2-21-06 - First smile at home!

11-14-08 Penni's 3rd birthday - November 14, 2008

August 2008 - Penni's gorgeous smile

July 2008 - Penni's first ferris wheel ride at sunset - Santa Cruz boardwalk

August 2008 - Penni's an integral part of our nature loving family - even hiking to Provo falls, approx 9000 feet with no oxygen needed anymore!

PART ONE - Torn in Two

(To get the whole scoop on what's up with MWOB this week, read here.  If you already know, I proudly present Part One of our guest blogger mini-series.  By Karen.)

As we approach the traditional American family holiday of Thanksgiving, I must reveal that this is an especially poignant time for my little family. This time three years ago, we were in the midst of the most trying time of our lives. Our youngest daughter was born November 14, 2005 with what was considered to be a fatal birth defect. It is at this time of the year where we often find ourselves reflecting on what was, what is and what still could be. 

Last week we watched our videos from those touch and go days in the NICU – my grandma and aunt were visiting and all of us ended up in tears. On the video is a long scene of everyone having Thanksgiving dinner in the hospital. We had my hubby and I, our two girls (then 5 yrs. & 10 yrs.), five of six grandparents (and all staying with us) as well as my stepdaughter and her husband. Looking around the table you see lots of smiles and love, but a definite tension as you realize everyone at the table is torn in half knowing that four floors above, the newest member of the family’s life was hanging in the balance.

Very few people have any idea how close we were to losing her and how excruciating every minute of every day was for us. Let me try to give you a very condensed version of what brought us to that table on Thanksgiving 2005. 

When I was five months pregnant, we took the girls to LDS Hospital in Salt Lake City to see the first pictures of their new baby sister. We didn’t know it then, but that ultrasound would reveal not only her heart beating soundly, but her stomach right next to her heart! She had what is called a diaphragmatic hernia – a hole in her diaphragm. They couldn’t tell in ultrasounds how big the hole was, but could estimate based on where the stomach was just how much of her abdominal organs had drifted up into her chest. Basically, these organs (stomach, liver, intestines, etc.) impeded on her lungs and pushed her heart to the side. We were told that her odds of living until birth were slim, her odds of living after birth were slim, and if she did live her odds of living past the first few hours were non-existent without extraordinary means and if she lived through all of this, we were taking the risk that her quality of life could be seriously compromised.   But the doctors also gave us a fraction of hope that her life could be very close to normal. 

Before I continue, let me say that without writing a novel on the issue, that coming to the final decision to continue on with this pregnancy was torture. It was filled with hours and hours and days and days of heartache, a range of emotions, discussions, prayers, hope, questioning, and fear.  One night it became clear to me that I simply couldn't live with the "what if's?" We decided to move forward hoping the pregnancy would go full-term to give her the best chance at life.  

We also knew even tougher choices were ahead  - every single step of the way in utero and after.  All I can say is I still cannot look back on those moments without my chest hurting and my breath becoming labored.

As the pregnancy progressed, I had numerous labor pains, but luckily she waited until they could induce me a week before her due date in a room that was next to the University of Utah’s NICU. While I was in labor, we noticed her name, “Penelope” on the nurses white board. We knew that while inside me, she was safe and that these were to be her last healthy moments.

When she slipped into the world, U2’s “The Sweetest Thing” was playing on our CD player. Her first cry was loud and then was immediately cut off as her lungs tried to breathe.   She instantly turned purple and she was whisked through a special window into the NICU. My husband and I just started to ball – it was the most painful moment of my life…up to that point.

(Karen's story in pics)

10/31/05 - My family insisted on the painted belly.  A little levity before her birth.

11/10/05 - A few days before induction.  The calm before the storm.

11/14/05 - Penni was brought into the birthing room to see us before transported to Primary Children's Medical Center in Salt Lake.

11/14/05 - Big sister Abby (5 yrs) didn't want to let go of Dad after they took Penni away.

(Tomorrow Karen's story will continue....)