For my whole professional life, I have felt at home in hospitals. I have been a unit secretary, a clinical technician and a registered nurse in many different clinical settings over the last 12 years — always feeling that I was at home in my work environment and with co-workers that were family. Recently though, I experienced a foreign feeling — I felt lost within the walls of a hospital.
Today will be a more serious post, a post that I didn’t consider writing until recently. Our sweet daughter Emma was born with a couple different health issues, only one of which we knew about before she was born. She was born with a pelvic kidney, which means one of her kidneys remained in her pelvis during development instead of ascending to its place in the back. In addition, she had something called a ureterocele, which is a portion of a ureter that extends into the bladder, causing it to hold urine and not empty fully. This causes frequent urinary tract infections, which over time can cause scarring to the kidneys. In the first seven months of Emma’s life, she had three or four UTIs in quick succession. The first was so bad that we ended up admitted to the hospital for a night so she could receive her first doses of antibiotics through an IV. After those infections, it was decided that we would try the least invasive surgical option, a laser incision of the ureterocele to drain it. This surgery was ultimately unsuccessful, and ended up causing reflux of urine back up to both of her kidneys, which in turn caused more UTIs. They were under control for awhile with daily doses of antibiotics, which gave us a sense of temporary relief. We were told we had to wait until she was 18 months old to do the definitive operation to fix her reflux, so it went to the back of our minds for the time being.
Now, to the second issue.
During a routine pediatrician appointment, we happened to mention that Emma’s head had a ridge down the center of her forehead, and appeared slightly triangular when compared to her brother’s head from the top. Our doctor took a look and said “it’s probably nothing, but it looks a little bit like craniosynostosis.” He promptly recommended that we see his neurosurgeon friend, which was NOT something we expected to hear.
At the neurosurgeon’s office, Dr. John Myseros took one look at her and diagnosed her with metopic craniosynostosis, or a premature fusion of one of the spaces in the skull that allows the brain to develop as a child grows. He assured us it was not a genetic issue, or the result of any syndrome. She is as healthy as can be ( minus the kidney issues), but just drew the short straw when it came to her skull. Next, we were sent to a plastic surgeon, Dr. Rogers, who laid out the options:
- Do nothing and watch it. There are many fully functional adults out there in the world that don’t know they have this. He mentioned an anesthesiologist he knew that had it, and the only way you could tell was if he tipped his head back and showed his forehead to someone who knew what they were looking for. This would involve monthly-ish visits to doctors to monitor her development closely.
- Fix it surgically. Dr. Rogers laid out the statistics for us to consider, which we carefully listened to. If there were complications from her condition, they could be anything from developing a learning disability, problems with eyesight, or problems with intracranial pressure (pressure within the skull and brain). The problem was, none of these complications were guaranteed, but they wouldn’t present themselves until further down the line. We were given the number 8. There was an 8% chance of her developing one of those complications.
After these options, we were told about what the surgery would entail and what the side effects would be. Dr. Rogers and Dr. Myseros would tag team the surgery. An ear-to-ear incision would be made on the top of Emma’s head, the frontal bone would be cut out and reshaped, then pinned/bolted back on. She would likely need a blood transfusion based on her size and the amount of bleeding that happens when you work on the brain/scalp. Her eyes would likely be swollen shut for up to a week after the surgery. She may have headaches for several weeks. But hey, her head would be a normal shape and that 8% chance would go away. At the conclusion of the visit, we were given those two options and were told to go home and make a decision.
We ambled out of the building slowly, in shock, and still processing all of the information given to us in the 30 minutes we sat there listening. What were we supposed to do? She was a happy kid, meeting all developmental milestones, and was extremely cute. Who cared about a little ridge in her forehead? Would she care when she was in high school? What if kids made fun of her? What if she developed increased pressure in her brain and we could have stopped it? How do we make this huge decision?
As parents, you are tasked with making decisions from the day your kids are born. What formula to use, what brand of diapers, sensitive vs. scented wipes, bedtimes, preschools, clothing options…. it’s endless. And we expected those decisions. Never in a million years did we expect to have to make a decision about whether or not to let a surgeon perform an operation that involved Emma’s brain and skull. We talked for hours and hours, asked our families to weigh in, lost countless hours of sleep debating with ourselves about what to do. Ultimately, 8% was enough for us. We decided to move forward with surgery, with the assurance that at 11 months old, Emma wouldn’t remember the surgery and it would be worse for us than it would be for her.
The dreaded day came in January for us to go to Children’s National Medical Center. Even writing about this day is bringing tears to my eyes, because the feeling I had when they took her away to the operating room is so fresh in my mind that it feels like yesterday. One minute she was happy and playing in my arms wearing a cute little hospital gown, the next minute the anesthesiologist is carrying her away while she is reaching for Kevin and me and crying her little eyes out. It’s heartbreaking to send your child with someone else, knowing what’s about to happen to her, and not being able to explain that Mommy and Daddy will be right here when you wake up. You can explain til you’re blue in the face, but they are too young to understand what you’re saying. All she knew is that a stranger was taking her somewhere and she didn’t like it.
The first surgery was easier to handle. This one was different…. it was huge. I smiled through hot tears and waved bye-bye. As soon as Emma turned the corner and disappeared, I melted down into tears. Did we do the right thing? What if something happens? It’ll be our fault for deciding to do this. I’d never felt this lost within the confines of a hospital unit, because now I was on the other side of things.
For the next six hours (yes, six), Kevin and I sat in the cafeteria with adult coloring books and a box of colored pencils. It’s so funny, I never thought coloring would bring such a sense of calm over me, but those little lines and those pops of color kept me focused on something else for what seemed like an eternity. We couldn’t bear the thought of sitting in a waiting room, staring at the screen that said “OR in” until she was done, so we distracted ourselves the best we could. It was in those six hours that I realized I had never truly known the amount of stress I could be under… and I’m an emergency room nurse, I know stress! I still to this day say that we aged 10 years in 6 hours.
The next few days were a blur. Emma did beautifully through her surgery, needed a unit of blood transfused, and her eyes swelled shut as the doctors said they would. We spent three sleepless nights in the intensive care unit, hovering over her every time she made a sound. We were on high alert 24 hours a day, constantly watching to make sure she felt okay. I watched every nurse with a hawk eye, not wanting them to know I was a nurse but also wanting them to know that I knew what they were doing and talking about.
As a nurse, you feel like you are prepared for what happens most of the time, always thinking a few steps ahead. I had never felt so unprepared for what was happening. I had never felt so much at a loss for what to do. I didn’t know how to make it better, and as a mother and a nurse, that’s my job.
Through it all, Emma remained as tough as could be, crying rarely and managing a smile anytime we played a video of her and Jack in the bathtub playing.
We went home after three sleepless nights in the intensive care unit and a night in a regular unit room. She healed beautifully, and now her head is perfectly round and her hair covers her incision. At her follow up appointments, Dr. Myseros was quick to tell us that we did the right thing. When they opened her up, her brain popped out to where it was supposed to be. This meant there was some constriction, and her brain growth may very well have been affected if we had done nothing.
In the last month, Emma had her definitive surgery to correct her kidney and bladder issue. After the head surgery, we thought this would be a piece of cake! Comparatively, it was. We didn’t have eye swelling or nausea and vomiting to deal with, we were in a regular room versus the ICU, and it was supposed to be a one night stay in the hospital. In the pre-op area, she was given a medicine called midazolam, which made her sufficiently loopy and hilarious to play with. She went with the anesthesiologist without an issue, and Kevin and I left the preop area with dry eyes. Her surgery took five hours, it was done through an open incision in her abdomen, and a catheter was left in her bladder. We took her home the next day after an uneventful recovery in the hospital, and despite a few hiccups with pain, she has recovered nicely and is running around like nothing ever happened.
Kevin and I have learned many things over these last 18 months raising twins, about parenting, ourselves, and our relationship with each other. I know one thing for certain — I am a lucky woman. Through all of this, I have had an incredible support system, led by my one heck of an amazing husband. He has been steady as a rock through the sleepless nights, hospitalizations, doctor’s appointments, and many nights where we lay awake wondering what to do. Our families have both been amazing, cooking us dinners, visiting both the hospital and our house on a regular basis, babysitting Jack so we could both spend the full day and night with Emma in the hospital. I count my blessings every day that we are so fortunate to have so many people that love us and love our children so very much.
I would be remiss if I didn’t give a huge shoutout to the amazing nurses, doctors, and support staff at Children’s National Medical Center. You are wonderful human beings and we wouldn’t have made it through this in one piece without all of you. Thank you for listening to me every time I told you Emma’s IV looked infiltrated, or when I thought I saw a better vein. Thank you for not being annoyed when I was that mom. Thank you for all you do.
Thanks to you ALL for listening to this, it was a long one! I promise, lighthearted posts from now on…. more to come shortly!