Chapter 9: Baby's First Surgery

A baby's first few months of life should be filled with many exciting firsts that proud new mothers eagerly document in their baby books.  First bath! First solid food! First trip to church! My babies memorable firsts looked a bit different... First ambulance trip! First IV placed! And... First Surgery! Not nearly as fun to record for the baby books but no less significant of milestones in their lives. 

My C section was my first ever time to have surgery.  My mom had her first surgery at 56 years old.  My dad had a knee surgery long before I was born.  My brother had tubes put in his ears but I would not remember that.  Surgery was anything but a commonplace occurrence in our lives.   Other than the hours I devoted to watching Grey’s Anatomy, surgery was about as far removed from my life as possible.  I still find it hard to believe that in just 2 short years, there have now been 27 times that one of my children have gone under general for a surgery or procedure.   It is no longer a rarity but unfortunately a pretty frequent part of my life. I’d love to say therefore that it has gotten so much easier and that it’s no longer stressful or emotional.  But, there is still something terrifying about leaving your child in the OR and I still hate surgery days more than any other days. 

She was 5 weeks old when Addie had her first surgery.  It was a small surgery, just having a Broviac or central line placed.  Which of course did not sound small to me when I understood that someone was going into my tiny perfect little girl’s chest and threading a piece of plastic into the main artery near her heart.  It sounded downright horrific and I was petrified and saddened by the whole process.  I suppose though that living in a NICU surrounded by sick babies does if nothing else, provide helpful perspective when needed.  So while I grieved that my sweet girl was going to have this surgery done, I also knew there were babies in her room who had endured open heart surgery within a week of being alive. And they were okay and their parents were okay.  So I knew God could protect Addie and that she could be just fine.  I knew there were worst things to have to endure and I took whatever solace I could in this as they wheeled her away in the tiny portable incubator to receive her first of many scars of honor. I waited and I worried and I prayed and I preoccupied myself with her adorable brother anxiously awaiting her return.

And I remember her return like a photograph, I remember her wearing a purple onesie and my marveling that the IV that had been so prominent on her tiny body was now gone.  She was now receiving medication through a small line hidden under the onesie.  It almost seemed better.  And while I had prepared myself for her to be asleep or in some sort of pain, it was to my tremendous joy that within an hour of her return, she was happily snuggled in my lap, drinking her bottle with a ferocious appetite and oblivious that anything significant had occurred in her life that day.  And relief washed over me.  We had just survived our first surgery day!  And it had not been horrible.  And my little girl came back as precious as I sent her.  And suddenly when I thought of the picture Dr Doom and Gloom had painted, of many surgeries to come, suddenly it actually seemed like maybe it wouldn’t be as bad as I had feared.  In that moment holding her in her purple onesie feeding her, I stopped feeling quite as scared.

Conquering my fear of surgeries was, however, short lived.  If I could give some advice to me two years ago, among the morsels of advice I’d hand to her would be to understand that every surgery is its own risk, its own experience and its own fear.  Do not fear some because they seem bigger and do not become complacent and stop praying and preparing through some because they seem small.  Just stay calm, stay busy, and stay prayerful and meet each surgery experience square on as if it was the first and only one.   But this was 26 surgeries ago and such wisdom perhaps only comes from experience.  Because after facing Addie’s surgery with sheer dread and trepidation only to find it far less traumatic than I had feared, I now developed a very relaxed approach to Max’s upcoming turn.  I was now a central line placement expert and it was going to be just fine.  No biggie.

Except well it did not exactly turn out that way.  Max’s surgery was delayed by a couple of weeks because he had been having some difficulties breathing and was still requiring CPAP a machine that went over his nose to give his breaths some extra force.  But replacing peripheral IVs in his hands and feet almost daily was becoming problematic so it was time for him to get his central line.  A swallowed a lump as he sped past me in his mobile isolette and then waited patiently for him to return and come sit on my lap and stare up at me and be as happy as Addie had been.  As the hours passed and he had not returned, I became increasingly less confident and more anxious.  We got word that his blood pressure had dropped and he had required fluid and things had not gone as smoothly.  As a result they were going to leave the breathing tube down his throat and bring him back sedated and intubated.  No sitting in my lap drinking a bottle.  No cute onesie covering up the new plastic in his chest.  He came back looking very out of it and sad and suddenly the things I had feared two weeks ago sending Addie off were there right before my eyes.  And surgery seemed like a really big deal again.  And years of many surgeries seemed heartbreaking and insurmountable.

It would be six long days before Max would come off the ventilator and start to seem like himself again.  And he would get worse before he got better.  Within 48 hours of his surgery, he started running a high fever and seeming quite sick.  His blood work indicated his blood pH had dropped and his urine output dropped and his blood pressure was unstable.  The nurse had to call and tell us that Max had developed a urinary tract infection that had spread to his bloodstream and he was now septic and in danger.  It was definitely the sickest we had seen either of them.  We spent days sitting by his bedside unable to touch him or hold him, reading him stories, holding back tears and praying he would get better soon.  He finally seemed to turn the corner.  One doctor told us that if he had not received a dose of immunoglobins IVIG the day after his surgery, we would have lost him.  Statements like that would just take our breath away.  We were literally living in a life or death world, daily.  And we had no choice but to just be grateful every single time life prevailed and a crisis passed.

These two experiences were our introduction to the world of surgeries.  Sometimes it goes so smoothly you wonder what on earth you ever worried about.  Other times you spend days wondering if you will even survive it.  Looking at it now, their first surgeries, their line placements, were actually perfect foreshadowing of their transplants down the road.  Addie would have to go first and we would worry ourselves sick.  And she’d bounce right back and completely shock us and make us laugh that we were ever so concerned.  And then Max would follow, and we would cling to Addie’s miracle for hope, and once again, he would have to fight for his life afterwards and leave us wondering how we would ever make it through.