A Mother's Instinct is Seldom Wrong

When I first learned that I was pregnant, I knew something wasn't right. And when test after test came back with funky results and I had to have more testing, I knew that test wasn't the answer. And when all tests eventually came back as okay, I still knew that they were all wrong. It was a long nine months. And although her diagnosis at birth was a shock to us all, maybe it shouldn't have been. Because my mother's instinct had tried to tell me from day one.

Over the years I have learned to trust it, not to chalk it up to overreacting. After dental surgery, it was mother's instinct that landed us back in the ER where Kennedy was admitted for a collapsed lung. During her long hospital stay at age 5, it was my mother's instinct that made the doctors pull the second VEPTR out of her back...we were home and on a better road to recovery within two days. During her T&A, it was mother's instinct that made me question everything that the doctors and nurses did (and rightfully so or I'm pretty sure she would have been taken to the morgue). It was mother's instinct that recently led us to an emergency doctor's appointment where she was admitted with MRSA (a future story). It was mother's instinct that led me to get rid of doctors and hospitals along the way, to change paths on our journey when needed, and to make the choices I have made.

And my mother's instinct was certain that I had made the right decision in jumping ship to Duke for ear reconstruction surgery. So why then was I not at peace with the upcoming surgery? My best friends can attest...I was a complete and utter mess in the weeks leading up to her October ear reconstruction surgery. I constantly second-guessed myself, I didn't sleep, I was in full stress-out mode.

So it is surgery day. We are up and out of the house by 5:30am. I haven't been to sleep yet (and will pull a 64 hour mommy shift before I can sleep again) and Kennedy is barely awake. By the time Dr. Marcus is done with his first patient and takes Kennedy back to surgery, it is several hours past her original surgery time. It then it takes over an hour to get her intubated and prepped. We later learned that they had a really, really hard time getting her on the ventilator.

What didn't help with matters was that it was a day where I needed to be in two places at once. While one child had to have a major, 6+ hour surgery that would forver change the way she looks, the other was serving on the Homecoming court that evening at the football game (a big deal when you're in a high school of 2500 kids, a big deal when you're a teenager). My sweet, sweet Katie will never know how hard that day was for me, not to be there for her. Because through all of this, my goal has always been never to short Katie for Kennedy's medical journey. And here I was, doing just that. My dad, her Papa, was filling in for Ryan as Katie's escort. My mom agonized over what to do and left the hospital with Kennedy still in surgery to be there for Katie. Ryan's dad left the hospital at the last minute and rushed to be at the football field to watch Katie cross. And our dear friends Josh and Allison surpirsed Katie by showing up to support her. As I sit here and remember that awful day, the tears are falling. It may seem insignificant to some, but having to pick one child over another is a heartbreaking, excruciating thing to do. I can only hope Katie understood and I am ever thankful for the support system we have (another day, another blog).

Six plus hours of surgery...how was I going to survive that? The max at this point was three and that was hard enough. But to reconstruct Kennedy's ear, there were several major things that had to happen. 1) Kennedy had an "ear bowl", unlike most kids with her syndrome. But it was down further than it should have been, out more towards her cheek, and much bigger than normal. So Dr. Marcus first had to do what he could to move this bowl in a better place and make it look natural. 2) Kennedy had several small pieces of cartilage where her ear started to form and didn't finish. He had to use one part as the earlobe and place the other pieces under her scalp to use in a follow-up surgery. 3) And most importantly, Dr. Marcus had to take rib cartilage from her rib cage to use as the framework for the new ear. He shaped this into an ear and planted it underneath the skin, making the shape of ear but with no projection. The next surgery would project it, using the planted cartilage.

Every hour we are given an update...still in surgery, they are still working. I painfully said goodbye to Katie (who skipped school to be there) as she heads off for her homecoming festivities. And we wait, and we wait. We were the last ones in the waiting room, going on 7pm, by the time Dr. Marcus comes bouncing out to us. And he is thrilled. He is still flying high on adrenaline and feels that he was able to do better than he had ever hoped. And although I flew with him at the point, I still wasn't at peace.

Let me just say that I hate post-op recovery. As much as I hate pre-op and waiting and stressing for surgery to start, and as much as I hate walking my tearful baby back to the OR and watching her be put to sleep, I hate watching my baby wake up in pain more than anything in this world. For those that know Kennedy and have been with her through these journeys, you know that Kennedy NEVER complains. It is often easier to get a bipartisan Congress to agree on something than to figure out if she's hurting or not, if she's needing pain meds. But coming out of anesthesia, it is a different story and all her walls are down. There are tears and sobbing, there is yelling "ow, ow, ow, ow." Then come the allergic reactions so on top of all the pain, there is just plain misery. And the tube has caused extreme throat secretions which she has trouble coughing up due to the pain, but can't breathe well if they aren't coughed up. And she doesn't want to move at all to avoid the pain. And with anesthesia still on board, there is no rationalizing, no convincing her that something may help. Recovery just plain sucks. And to top this one off, her head is engulfed in this huge, q-tip-like bandage which she DID NOT LIKE.

That night was spent in ICU. And for all Duke Children's has going for it, their ICU blows. Not the care, just the set-up. They are double rooms and we were first put into a room where a teen boy was dying of a brain tumor. They had called in the entire family just that afternoon. We were moved later that night, learning later that the boy's family saw Kennedy's entire head in bandage and thought she was another brain tuomor patient. They said it was too hard for them to see a child that small going through the same thing their son had been going through. Although Kennedy's issue was much simpler than they thought, I was happy to be moved as I wouldn't want to intrude on someone else's death. With all the children who take their last breath at Duke, my hope is that they someday soon have individual ICUs. And ICU policy does not allow parents to sleep in the room (I can't even begin to explain this one) so night two of no sleep for me.

We were moved to a room the next day and the rest of the hospital visit was uneventful. The nurses were great, the hospital was great. Being on the cancer floor (where we were told that Dr. Marcus likes his patients) was humbling in so many ways. Surgery was on Friday and we were heading home, albeit still in the q-tip bandage, on Monday. And although Kennedy was doing well post-op, I still wasn't at peace.  

I keep coming back to the point that I still wasn't at peace with everything. At the time, I was chalking it up to the fact that I was mad that as a mother, I shouldn't have to decide what my child's face is going to look like. Looking back, I think my mother's instinct was trying to tell me that even though switching to Duke was the right choice, ear reconstruction may not have been (and it will take a few more blogs to determine the truth or not of this statement). But as Dr. Marcus reminded us, hindsight is 20/20. But a mother's instinct is seldom wrong.

(NEXT BLOG: The Reveal. And please know that whether you know us or not, it is okay to share this blog, okay to comment on this blog, and okay to choose to be a follower of this blog. It is also okay to stop following at anytime :).