Surgery Day Recap

Wow!  Where do I begin? How about with the present.  After that we’ll rewind the day and share with you how things unfolded today.

I sit in a comfortable chair in our second story bedroom in this cozy yet well-sized English Tudor in lovely Menlo Park, CA, looking at my beautiful wife who just barely gave up for the night. She is resting peacefully--I think--in an antique bed with a thick down comforter atop and a mattress that I believe tops all mattresses.  My friend, whose mother’s home this is, calls this bed a “drug” and now I know why.  I suppose you could also chalk it up to sheer exhaustion, but we have slept well since we first arrived.  Lisa’s hasn’t slept more than four hours at a time, and I probably haven’t slept more than six, but those four or six hour increments have been characterized by deep sleep.

I am so happy that Lisa is sleeping. About 6:15, she hit the wall.  Adrenaline, anticipation, the spirit--all of that has given us energy since last week.  As soon as we got the good news today, the adrenaline started wearing off, and Lisa’s body said, “Ok, now it’s my turn. I’m shutting down.”  I was happy to see that.

An Early Departure to Hold our Baby

That was at about 6:15, as we sat just outside the Cardiovascular Intensive Care Unit (CVICU), while a team of about 10 people got Abigail situated into her new home.  Exhaustion had set in, and Lisa was just about down for the count; however, she knew that she still had one feat to accomplish before she completely called it a night, and that feat was to go see her baby--post major surgery, which, for any mother who has beheld her child just after open-heart surgery will attest, is a feat that requires significant energy.  So, she flipped the tank to reserve, and garnered enough energy to make it through that experience--an experience I will get to momentarily.  First, let me lay out the chronology and thoughts of the day.

We pulled out of the driveway while the stars were still out--about 5:20 a.m.--so that we could have ample time to be with Abigail before surgery.  Some of you have seen the video of Lisa and I holding her and her bundle of blanket, pad, and cords.  I wish that I could properly express what that felt like.  It was really the first time that either of us had held her.  Lisa hadn’t really held her in the delivery room; the concerned nurse had just held the baby up to Lisa’s cheek for about 30 seconds, and then whisked her away.

I promised myself as I held her that I would never forget what this felt like, and that four months from now when she awakes in the middle of the night, screaming, and mother’s milk won’t calm her that I would be patient and hold her with that same love.   I also thought about Samantha, Jeffrey, Daphne, and Emma and vowed that I would hold them with the same kind of love (although, somehow I don’t know if the teenagers would appreciate that, but at least Daphne and Emma will).

At 7:30, they rolled Abigail in her NICU bed to operating room, an experience I described in a previous post.  I also described how the day went, and that we had met Dr. Reddy for the first time this morning.  It may seem odd to some that we would meet the surgeon of our daughter’s heart 15 minutes before surgery but you must remember that we had consulted with multiple cardiologists at Primary Children’s, and that all of the diagnostic work took place there, and that we asked and receive answers to all of our questions regarding Abigail’s surgery in Salt Lake.  There were no surprises once we got here, and we felt no need to consume any of this terribly busy man’s time.

Heroes and Friends We Met Today

I have already described our feelings while we waited.  Strange, really.  The hours moved by quickly and peacefully. That was partly due to the fact that we met some of the most pleasant and caring people while we sat in the Family Waiting Room. One mother, whose son was in for eye surgery, had written down her home and cell phones numbers within three minutes of learning why we were there.  She asked us to call her if we just needed to talk, or needed a nice meal, or just wanted to sip coffee together (no, I didn’t get into the word of wisdom discussion).

We met another kind woman who was sitting across the room from us, and seemingly out of nowhere asked, “Are you Abigail’s parents?”

We nodded, a little taken aback.  “Yes,” we responded curiously.

“I was just reading your blog, saw your pictures, looked up and there you are!” she said.  She was in with her son, 21-month Owen Simmons (www.owensheart.com--check out her blog; this kid is perhaps the cutest boy you’ll ever see).  Owen is much more sick than Abigail, and was born with essentially half a heart.  After multiple surgeries, his heart continues to fail, kept alive by medicine and by a permanent oxygen tank that his mom totes around.  He hopes to get a heart transplant soon before his heart fails.

Owen’s mother, Andrea, had heard about us from another “Heart Mom”(a community I didn’t know existed 10 days ago) who is a neighbor of my business partner.  This Heart Mom is Summer Strickland of Highland, Utah, whose boy, “Miracle” Mason, finds himself in the same fight for a transplant as Owen (miraclemason.blogspot.com).

These two families have dealt with far greater anxiety and uncertainty than we probably ever will with Abigail’s condition, and yet they continue on, probably incurring debts that may take a lifetime to repay, hopeful for a miracle, savoring every breath of life their sweet boys take.  Andrea’s doctor advised her to abort Owen when they learned pre-natally that he had half a heart.  He told her, “You can always have more kids.”  She didn’t abort.

I asked Andrea if the uncertainty and the possibility of losing Owen was worth the price they paid each day, as they sacrificed almost everything trying to find a way to heal  him.  I knew the answer before I asked it, but for some reason I wanted to hear her say it.  I needed to hear her testimony.  She responded as honestly and sincerely as one can, “Absolutely.  I wouldn’t trade these last 21 months for anything.  Yes, it’s worth it. No question.  It does get harder the more he grows, but I wouldn’t trade those moments for all the world.”

I had asked myself the same questions a few times during the last 9 days.  What if Abby dies?  Would it have been better if she hadn’t been born?  Are these few days worth the pain that will linger far longer than a few days?  Yes.  Yes.  And yes.

Each time we kissed her head or her belly, or rubbed our hands over her perfectly smooth, clean, unblemished, baby skin, or stared back into her blue, searching eyes, I knew it was worth it.  Every time I saw her binky (pacifier) bob up and down as she sucked away, or every time I heard her raspy cry, I knew it was worth it.  I am grateful tonight that it appears that I won’t have to ask “whether it was worth it” but even still, had we drawn a different straw, I know it would have been.

Before I complete this thought, let me say that hospitals bring out the best in most people.  We ought to get all the tyrants, dictators, presidents, and terrorists together for a week’s stay at a Children’s Hospital.  We just might solve the world’s problems that way.  My heart has grown three sizes this week (watch out, Grinch) as I have been the recipient of so much kindness, and as I have learned of the stories and illnesses that so many other families face.  I’ve had a crash course in what matters: love, genuine concern for others, service.  Everything else is secondary.

Post Surgery:  The Smile That Said it All

About 3:00, we received a page from the Family Surgery Waiting Room, signifying that the surgery was soon to be completed, and that we were to return to waiting room to await a consultation with surgeon.  When we arrived, we were told to wait in the Consultation Room, a room where families learn of the failure or success of a surgery.  I can only imagine how many payers have been said in this room, how many tears have been shed, or how many embraces have occurred in this room.

Now the nerves started. Even though we had received an update about three hours earlier from the operating room that “things were going well” we still waited with anxiety.  I could feel my heart thumping in my chest, hoping and praying that Abigail’s was thumping as well.

Just after 3:30 p.m. one of the members of the surgical team poked their head into the consulting room.  She was smiling.  Suddenly, “the moment” I had thought would send me into a panic, didn’t.  It happened too fast.  We didn’t have to watch the surgeon approach, as we tried to read his facial expression.  Lisa and I had joked throughout the last few days, in anticipation of “the moment”, that we were going to ask the surgeon to just text us “thumbs up” or “thumbs down” and be done with it.

The smile gave it away, and suddenly my heart felt lighter.  “She’s off the bypass machine, her heart is beating strongly, and everything went perfectly.”  Joy.  Pure Joy.  Relief.  Gratitude.  Humility.  Those words describe the emotions we felt after we heard those words.  She continued, “Dr. Reddy is just finishing a few things on the surgery and he’ll be in to see you in about 45 minutes or so.”

She left. We closed the door.  I knelt as Lisa sat (kneeling isn’t kind to recovering mothers).  I thanked Heavenly Father for saving Abigail’s life, for providing such competent care, for allowing medicine to advance the way it has.  I also prayed for our children at home. I prayed that they would understand the significance of this; I prayed that they would feel the Holy Ghost tonight.

Post Surgery:  Dr. Reddy

Dr. Reddy came in about an hour later.  We didn’t mind the delay.  We had plenty of people to text and call with the news.  He walked into the room, also smiling.  He’s personable but efficient in his communication.  He exudes the confidence that his work has given him.  Yes, he is the Michael Jordan that isn’t afraid to take the last shot.

Prior to the surgery, he told us that the most tricky part was going to be to patch the various holes in the septum (the “wall” that separates the left and right atriums and ventricles).  The fact that there were numerous holes was a bit of a surprise to me.  I had only thought that there was the major one in the ventricles along with the one they had ‘created’ through the catheterization.

Dr. Reddy reported that he patched all of them, with the exception of a few microscopic holes that will fix themselves as the septum grows and thickens.  Moving the Aorta and the Pulmonary Arteries was no problem, and fixing the narrowing in the Aorta was easy, he said.  Easy isn’t a word that I would use to describe it, but then again, I haven’t operated on a heart the size of a grape in a 1.5 pound baby.

He commented on the fact that her valves were “very strong” as they had been watching the heart pump for nearly two hours at that point, and the valves were working beautifully.

I had written down a list of questions I was going to ask him to ensure that we left the hospital tonight with every relevant and important question answered.  He answered most questions before I could ask them.  On my mind were the following questions.

He told us that he left the chest bone open to allow for the heart, which may swell from the surgery, and need ample room to recover.  Apparently, I had miscommunicated the process here. They do not sew the skin back together if the chest cavity is still open, as I described last night.  They actually just leave it open with a protective covering over it. So, as we speak, Abigail’s insides remain open to the world.  They will likely close the chest on Friday or Saturday.

He said that if all goes well, recovery will likely take two weeks.  Two weeks.  Amazing how fast the body can heal itself form such an invasive surgery. He said that after discharge, they like patients to “stick around” for a 3-4 days just in case, and to be close in case complication arise.

Dr. Reddy said that the odds of Abigail needing another surgery are about five percent.  Sometimes the pulmonary artery doesn’t expand the way it should after such a procedure, and that would cause one to fall within the 5% group needing additional surgery. I like those odds.

A Visit to Abigail

Finally, I return to our visit to Abigail.  Andrea, the mother of Owen, the heart patient I discussed earlier, has warned us that we would likely be horrified at the sight of our daughter after surgery.  As you can see in the picture below, Abigail finds herself covered in cords. She has multiple tubes going in and out of her body. Some are measuring her blood pressure both in the heart itself and it other parts of the body. Another is taking her temperature, while another feeds her.  And yet another give her nutrition.

The sight was a little much for Mama to witness.  I was fascinated and energized by it all.  The tubes and machines were an example of the miracle of modern medicine at work.  On the other hand, Lisa had a hard time getting past the tubes protruding form her chest cavity, draining fluids form her body.  Or the pace-maker wires sticking out of her chest--just in case they needed to provide the heart with a little electricity.  For mothers who love their kids more than a father could ever imagine, the sight was too much.  For the first time in nine days, Lisa was anxious to leave Abigail’s bedside.

As I mentioned earlier, her chest cavity is still open.  Some type of plastic with a mesh structure sewn into it, along with a bunch of “dressing” are protecting the insides of her body from infection.  A large piece of gauze rests on her chest, hiding the hole. The nurse removed the gauze, and I could see the small portion of the heart--beating away!  I thought about taking a picture of the open chest, and then decided that I wasn’t that calloused.

She rests perfectly still, sedated with the ventilator tube back in her throat by design so that hey can do all the breathing for her and take any extra strain off the heart.

Lisa’s Body and Spirit Had Enough for the Day

As I mentioned, Lisa couldn’t witness the sight of her daughter, tubes coming and going from virtually every direction.  I took her home (that’s how comfortable our accommodations are--we are calling it home), and tried to get her to go right to bed.  She pumped, and then ate some soup and bread that our hostess had prepared for us, and then went to bed, where she rests comfortably now.  I hope she is dreaming happy dreams, and that her last image of Abigail is not on her mind.  Her body is overdue for rest.

What Now?

I don’t really know other than that the next step is for them to close her chest this coming Friday or Saturday.  We will now sit by her bedside and watch her young, strong, female body recover like a champion.  Another miracle.  I will continue to post updates as interesting events occur.  Good night.