A Successful Surgery...

Dear Family and Friends,

As I write this, we are driving home from CHLA. It’s 1am and Everett is sleeping soundly in the car seat next to me. As with all things hospital related, patience is key and going with the flow a necessity. We arrived at CHLA at 1:30pm for a 3:30pm surgery. After getting checked in, we were brought into pre-op where we were warned that his surgeon had an emergency earlier in the day. This had delayed her scheduled cases. Zac and I try to remember that at one time, Everett was the emergency case that probably delayed another family, so we settled in for a long wait and tried to keep Everett distracted from his grumbling tummy. Somewhere around the two hours delayed mark, his surgeon stopped by and apologized profusely. She said it would be another two hours, at least, but if we were ok, she was ok to proceed as scheduled. Slowly the pre-op unit cleared out until it was just us and two other families. As the minutes wore on, Everett became more frustrated with the lack of food and water, but thanks to his iPad, the tears were not constant. At 7:45pm, we were finally ready to go. At the OR entrance we hugged and kissed and told him he was a big, strong boy. He wasn’t scared or crying, but was giggling about a joke the anesthesiologist made. It wasn’t traumatic or tearful and for that I’m very thankful. 

Everett was in the OR for over two hours. During that time they closed the surgery waiting room so we, and the two other families, were ushered into consult rooms on the OR floor. We were placed with a mom awaiting surgery results for her nine-year-old daughter. We got to talking. Small talk at first which then became deep conversations about having a hospitalized child; the feelings of isolation, the financial devastation, the worry, the responsibilities at home, the guilt...the weight of the reality. This woman was drowning in sadness and sorrow. She opened up to us and trusted us with her feelings. I was reminded of the couple who sat by us during Everett’s first surgery. They guided us through that experience. For this woman, who was suffering so much, I wanted to be that guide for her too. We listened. We acknowledged. We understood everything she said. I truly feel that we were delayed today so that we could be there with her. I pray her daughter has full healing. 

The surgery was complete around 10:15pm and Everett’s surgeon said it was a success. She (hopefully) treated the source of his pain and in three weeks time, he can return to normal activities. The anesthesiologist waited until he was asleep to start his IV and took it out before he really became aware it was there. His incisions are closed with a type of glue that don’t have any tape over them. For all these things we are so thankful. We left CHLA around 12:30am. We debated getting a hotel and staying another night, but Everett said he wanted to be home. For how strong and brave he was today, for how little he complained and for how he continues to amaze us with an understanding that is beyond his years, it is a small thing that we can do to drive him home in the middle of the night to reward his courage.

We thank all of you, Everett’s prayers warriors, for lifting him up and encouraging our entire family. Thank you for loving him as we love him. You have each made a difference in our lives. In closing, his surgeon told us tonight that on days when everything seems to be going wrong, when the gravity of her job makes her feel helpless, she often thinks of Everett as a symbol of hope. And with that, we all shed a tear together ❤️.  

Goodnight,

The Bollinger Family

Everett's Fourth Surgery...

Dear Family and Friends,

It’s been over two years since I’ve written about Everett and our fight with prematurity.  The last time I wrote about him, he’d just been diagnosed with ADHD and we were scrambling to find the help he/we needed.  Two years later, we’ve settled into a really great place, armed with a team of experts at school, in the community and at CHLA who have been showing us the way toward living and thriving with the diagnosis.  And thrive he does.  Everett is, as always, doing exceptionally well…amazing us with his smart brain and his miraculous body.  He remains the sweetest child, always eager to please, willing to help, completely devoted to his family and friends, and wise beyond his almost nine years. 

The effects of Everett’s prematurity are always with him.  He/we have learned to work with them and they rarely slow him down.  He understands that his body works a little differently because he was born so early.  He’s been working with an ADHD coach who has helped him learn about his unique brain and the incredible things it is capable of.  However, one day this summer Everett let us know that his body has been in pain for quite some time.  After seeing a doctor here, we made the trip back to see his surgeon at CHLA who found that he’s experiencing a common complication from his previous abdominal surgeries.  The scar tissue in his abdomen is pulling on other structures in his belly, causing him constant pain.  While he says the pain gets better and worse throughout the day, he is never without some level of discomfort.  As a result, we head back to CHLA for surgery on Wednesday, August 22nd.  

Compared to the surgeries he’s already endured, this surgery will be minimal.  It is scheduled as an outpatient surgery, meaning we will get to go home the same day.  But handing your child over to a surgeon is never easy.  It goes against every single instinct in your body to protect your child from harm and pain.  It’s also trickier this time as Everett is old enough to reason but not quite old enough to understand.  He knows that he’s in pain and understands that he needs surgery to make the pain stop.  But he is concerned about the logistics of being cut open, the blood, and the new scars on his body (we will be adding two more).  We are concerned about his recovery (he has to be “down” for a week) and his ability to tolerate his dressings after surgery.  Oh and the thought of putting him back on a ventilator, even for a short time, scares me to my core (completely irrational fear, I know, but it’s there).  

One fascinating thing is that even though Everett was only 14 months old at the time of his last surgery, he’s told us he remembers some components of it.  He remembers the mask over his face with “the gross tasting air.”  And he very clearly has some memory of all the tape that was placed on his body during his first year of life (from IVs, breathing and feeding tubes, his ostomy bags).  Everett has always struggled with adhesive aversion.  Meaning he doesn’t tolerate stickers, tape or band aids on his skin…at all.  His therapist calls it “pre-verbal trauma” meaning while he can’t recall the memory of all the tape on his body, he knows the sensation and is terrified by it.  As a result, he’s rarely tolerated any type of adhesive on his body.  In anticipation of this surgery, we’ve been working with his therapist.  In our session, she placed a band aid on his skin then taught him relaxation techniques to help decrease his anxiety.  He clawed at his arm and whimpered for the entire 10 minutes the band aid was on.  It was almost unbearable to watch.  So now we are looking at adhesive alternatives to get him through this surgery.  

We are so thankful that his surgeon, the one who saved his life eight years ago, is going to do the surgery.  While we haven’t seen her in seven years, I still send her letters and pictures twice a year so she can keep up on Everett’s life.  When I spoke with her before our appointment she brought up the letters.  She said she and her office look forward to them every Fall and Spring.  They keep them all in a file and when a new one arrives they pull them all out to compare and see if he has new glasses (which I find hysterical).  I told her I was excited for her to “meet” Everett again.  I told her he is the sweetest child.  She said “Of course he is.  That’s because of all the love you poured into him to will him to survive.”  At those words, I lost it and cried, like ugly cried, into the phone.  It just goes to show that she too thinks he is a miracle.  I hope someday she shows his pictures to a another family, who maybe has been given as devastating odds as we were, and can tell them that odds aren’t everything and can show them that miracles really do happen. 

If you, Everett’s prayer warriors, could think some good thoughts and send up some prayers on his behalf, we’d appreciate it.  He’s already been through so much and sometimes I feel like the world asks too much of this little boy.  But then I remember that there hasn’t been one thing we’ve asked of him which he couldn’t accomplish in his own way, in his own time.  So I know he’s got this. 

Always with love and gratitude,

The Bollinger Family  

A Letter to the Mom Who Watched Me Bring My Baby Home...

Today is the eighth anniversary of my micro-preemie son’s homecoming.  Eight years ago we walked out of the hospital and into our home.  It marked the completion of one of the hardest times in our lives.  It was the beginning of a journey of love and hope and appreciation for all that we never dared to dream he would be.  We celebrate this day every year, knowing we’ve been given a blessing that not all NICU parents get to experience.  We honor those who helped save his life by sending cards of thanks and encouragement.  And yet today, eight years later, I find myself thinking of you…the mom who watched me bring my baby home.  

You were standing in the hallway outside the NICU door.  I’d never seen you before, but then again, being in an 88 bed NICU distributed among many rooms, we rarely saw other parents.  You were standing with your husband (or boyfriend) and when you saw us, carrying our six pound, six-month-old son in his carseat, you burst into tears and buried your face in his chest.  He instinctively moved himself between you and us, physically trying to shield you from your pain.  It was subtle and obvious all at the same time.  

You weren’t much taller than me.  You had dark hair.  You were maybe a little younger than me.  And in that split second, our moment of joy brought you a moment of pain.  I should have hugged you.  I still don’t know why I didn’t.  I wish, with all my heart, that I had.  I think I was fairly certain that if I took one more step toward that NICU, some doctor would come and tell me that there had been a mistake, that he couldn’t go home, that we would have to leave him as we had done a hundred times before.  I think I meant to smile at you.  I can’t remember if I did.  But I want you to know that I saw you.  

Eight years later, I wish I had taken a moment to acknowledge your pain.  Eight years later, I wish I had taken a moment to hear your story.  Eight years later, I wish I had taken a moment to tell you ours…if anything, to give you hope.  You see, our son was/is a micro-preemie.  Born at 25 weeks gestation, weighing 1 lb. 13 oz.  We transferred to Los Angeles from our local hospital, four hours away, when he needed emergency surgery.  He had been plagued with “preemie problems” and our NICU stay had been anything but predictable.  We’d been through two surgeries, countless close calls, and had been told more than once that he might not survive.  He struggled to learn to eat and to breathe and to survive.  But he did survive.  And now he thrives.  

In naivety, I remember hoping, in that moment, that your baby was a “grower-feeder.”  The reality was, of course, there were no “grower-feeders” at that hospital.  All the babies there were in life threatening situations, including yours.  I wish I had told you that this agonizing moment for you was the first time he’d been in his carseat.  That this moment was his first time wearing pants.  That this moment was our first time seeing him without a wire or tube attached.  I wish I had told you that while no part of this journey had been easy, there had been many moments of immense joy and excitement.  I wish I had taken the time to tell you what someone had taken the time to tell me…that a NICU mama’s job, your only job, was to hope for your baby. 

I’ve often wondered about your baby.  Were they a micro-preemie too?  Were they a boy or a girl?  Had you known you’d end up in the NICU or was all of this, like for us, a complete surprise?  I’ve often thought about you too.  Do you remember that moment?  Did you wipe away those tears, walk back into that NICU, and hope (maybe against some staggering odds) that this would be you someday?  Did you get to bring your baby home?

So, if you were the mom standing by the door of room 303, on 3 West, by the Giraffe Elevator, at Children’s Hospital Los Angeles, on Tuesday, March 16, 2010 around 3:30pm…I want you to know that I saw you.  I saw you and your pain.  I saw you and a small glimpse of the journey you were on.  And I hope, I hope, I hope, that you are celebrating homecoming anniversaries too.  

With Hope,

Sara Bollinger