No Other Option

On the morning of Joseph's surgery, we met with the surgeon very early. Neither Ryan nor I had slept much the night before, but I remember thinking how very odd it must be to be him - to arrive early in the morning in a tailored suit and talk to exhausted parents about how, in just a couple of hours, he will effectively rearrange their child's heart.  How often he must get looks of absolute desperation, silently begging him to please, please not be having a bad day, to please be careful.  How he certainly must know how important he is, though he didn't act like it.  After the surgery was over and he had met with us to tell us how it went - "really well," he said, "was just what we expected" - he said to me: "You should get some rest, Mom...just given birth a week ago and now all of this - my, you must be exhausted."  I smiled a little, but I was confused - I knew he had been in surgery late the night before, had returned to talk to us at 6:00am, and then performed open heart surgery on the tiniest of patients - he must be exhausted.  Doctors and nurses left and right were offering me wheelchairs, glasses of water, prescriptions for Zoloft, and shoulders to cry on, but this day was just par for the course for him.

In a wild twist of fate or generous act of God or amazing coincidence, or whatever it was, Joseph's surgeon had also been my surgeon 25 years earlier, when he repaired a hole in my heart.  We only discovered this after telling his name to my parents, not expecting any out-of-the-ordinary response; instead, their jaws dropped. We spent the next day doing the math and guessing how old he was when he did my surgeon; could it be the same man?  When we met with him the morning of the surgery, this was the only coherent question I asked him, and he confirmed, that yes, indeed, he had been a surgeon then.  I didn't have the time or mental capacity to spend time marveling at this fact, but a few days after Joseph's surgery, I was able to talk with him for awhile and thank him (though how do you properly thank someone for saving both your life and, 25 years later, your son's?) for everything he has done for our family.

So even though I had never properly met him and have no memory of him from my time in the hospital, I trusted him.  There were other times during the long hospital stay that I questioned how much money we were going to pay for consultations and procedures; this was completely opposite. I wanted to ask him what else I could do - could I sell my house for him? Make him dinner every day for a year? Bring him coffee?  Was there a Fans of Dr. Brown page on facebook that I could join?

We had to sign consent forms for the surgery.  One line we had to initial by said that we understood that this was the only known medical intervention for this condition. I had known this fact already - had known it for nearly a month by that point - but for some reason him saying it out loud sucked the breath right out of me. This was our only option, the only way for our son to survive.  I thought of a line from the children's book We're Going on a Bear Hunt in which a family has to go through several obstacles to find the bear, and at each one says "we can't go over it. We can't go under it. We have to go through it."

And so we did. We had no other option.  A couple of days before, a dear friend that I had being keeping up to date and confiding in about how very scared I was, texted me this quote: "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying 'I will try again tomorrow.'" And we would do it, though we were weary, scared, too overwhelmed to pray anything besides please. This was the only way.


The surgery lasted four and a half hours.  Shortly after they took him away (maybe someday I will be able to write about this moment; for now, I simply cannot), the nurse practitioner  that works with the pediatric cardio thoracic surgeons walked us upstairs to his new room in the pediatric ICU, and then down to the waiting room.  Never in my life have I felt like I did that morning - like I was walking through a haze, hearing the words people were saying to me and seeing where I was, but processing none of it.  Maybe if I squeezed my eyes closed for long enough, I would reopen them and be sitting at home in my bed with my healthy baby who did not, in fact, need open heart surgery to survive.  If it was a movie, I would've fainted, but I didn't - I just kept going through the motions that I was supposed to with the hopes that at some point it would end.

In the day or two before the surgery, I had asked three other parents who had been through this a question: how did you get through the surgery?  What did you do? I felt like the only way I could possibly survive those hours of knowing my newborn baby was nearby on an operating table with a bypass machine doing the work of his tiny heart while a man and his team reassembled its little arteries - first the aorta, then the pulmonary artery, then the two teeny, tiny coronary arteries - was to be sedated myself.

I cried pretty much the whole time. I would stop for awhile, and try to distract myself with a book or the computer, only to start again. I thought of encouraging words people had shared with me in the days leading up to his surgery; how my brother's pastor had told him that the hands that knit Joseph in my womb were the same hands guiding the surgeon that day.  I prayed for God to be with him when we could not (I prayed this same prayer every night that he was in the NICU and I left him, late at night, to drive home and sleep for a while before returning).

I remember at one point being folded up beside Ryan, tears streaming down my cheeks, and looking up to see a man walking by, glancing at me. I wondered what he must have thought.  But if he would have stopped, what would we have told him? How could I even begin to explain?

Our close friends brought us lunch. It was a welcome distraction and we managed to hold a conversation with them while we ate. I have no idea now what we talked about, but I'm so grateful they did this for us.

Shortly after lunch I needed to pump again. This was the only thing I felt that I could do to help Joseph, so I pumped like clockwork, hoping that the milk I provided would give him strength when he was able to eat again.  We decided that Ryan needed to stay there in case there were any updates while I was pumping, so we walked to the nurses' station to ask for someone to walk me back.  In the haze of walking from Joseph's room to the waiting room earlier, I had followed so dumbly that I couldn't have even guessed how to get back to where we started.

But as we walked up to the nurses' desk, Kathy - I will never forget Kathy, for she was the one who gave us updates during his surgery; I would nearly jump out of my chair every time she walked over to us - said with a smile "It's over! He's done!"

At first I felt relief, and just as quickly, panic.  Why was it over so quickly?  Did they have to close early because they couldn't fix it? Was it not as they expected?  Of course by this point it had been 4 1/2 hours, by no means a quick or easy surgery, but they had told us to prepare for 6 hours.  Kathy assured us it was because Dr. Brown "is just that good."   I wouldn't believe those words until we talked to him ourselves about 45 minutes later, but thankfully, it was true.  Everything had gone as expected and Joseph had done well.

We grabbed our things and walked back upstairs to the waiting room where Dr. Brown would come see us. We first talked with a nurse, and then Dr. Brown.  I remember trying to put into words how very grateful I was for him, but all I could put together was thank you.

It would still be awhile before we could see him. We stayed in the waiting room, updated our family and friends, and I feel asleep for awhile. We were so relieved, breathing easily for the first time in weeks, but knew we still had a long road ahead.

Though they had prepared us for what he would look like after surgery, it was still so hard to see him like that - swollen, with a breathing tube and a million tubes and wires.  He had his own nurse dedicated solely to him, and she was incredible.  She was back with him the next day, and worked overtime the following day to be with him again.  He also had the same night nurse for the first two nights. These women were strong when I could not be. They had parent sleep rooms where we could be nearby, but not have to try to sleep in a room with constantly beeping machines and people in and out all night, so usually one of us would stay up late with him and the other would get up early. I would also always go in and check on him after pumping in the wee hours of the morning, and sometimes would stay an hour or two if he was awake. The second night, Ryan had gone to bed and I was having a hard time leaving to go pump and get a few hours of rest, even though he was asleep and stable.  His nurse, Lisa, came over to me and said "get your rest now, Mama. He will need you in the morning when they pull his breathing tube." They know and understand so much - they know when it's time to panic, but they never do.

He was on the ventilator for 3 1/2 long days as we waited for his swelling to go down enough that they felt his tiny airway would be sufficiently open on its own so he could breathe clearly; he also had a drain line running from his chest for about the same amount of time. It was dangerous to wiggle that line out of place even a tiny bit, so we couldn't hold him for this whole time.  Nothing quite prepared me for this: a mother's instinct is to scoop up her baby to comfort him, and I couldn't. It was a long wait.

On the third day, they had to put in a feeding tube through his nose. We knew it was a step in the right direction, because it would gently prepare his little tummy to eat normally again.  Though it didn't seem to bother him once it was in, putting it in was no fun (though a week or so later, he pulled it out on his own, and since by that point he hadn't needed it for over 24 hours, the nurses left it out - we think he had had enough of hospitals by that point and was taking his care into his own hands!).  Because he was still on the breathing tube, he didn't have a voice, so when he cried (which, thanks to sedation and pain medication, wasn't often), he cried silently. So when they put the feeding tube in, he cried the whole time and a bit afterward.  I stood by his bed while they did it and talked to him, as I often did, but this time I cried, too, arching my head to wipe my tears on my shoulder so I didn't have to take my hands off him.  It only took a couple of minutes, but seemed like forever. When he didn't settle quickly after it was over, they gave him a quick, heavy dose of pain medication, and he was back to sleep within a few minutes.

There are so many more moments like this; I could write a novel. Every day seemed to be one step forward and two steps back. Nothing could have prepared us for this, even though the hospital staff did the best they could.  But I understand now how God's timing works - so many factors fell into place exactly as they had to for him to survive and thrive. So many things could not simply be just a coincidence; it has the work of a greater power written all over it.

I still feel like I'm processing all of this. As it happened, we were in survival mode - sleeping when we could, trying to absorb all of the information as it hit us, as well as attempting to get to know our brand new son, and still managing to see Nora when we felt we could safely get away.  So I'm sure as time passes and I can finally fully grasp what all happened, I will write more, but for now, I'll leave you with this: a photo of me holding him for the first time after they pulled his breathing tube. What a beautiful relief this moment was.