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Thursday, April 17, 2014

A glimpse into the mind of a medical mom


A few years ago, I went on a little road trip to the Grand Canyon with my mom, a dear friend, and the 2 kids we had at the time. We left in the early afternoon and drove to the South Rim. In order to get to the hotel where we'd be staying the night, we had to enter the park, drive for a while, and then turn south to exit the park and get to the hotel. By the time we got to the park entrance, it was well past dusk and all we could see was the road in front of us and the trees that were illuminated by the headlights on either side of the road. Although some of the sharp twists & turns in the road made me a little nervous, I felt comfortable driving the road in the dark and was enjoying the ride with my family. We arrived safely at our hotel and settled in for the night.

The next morning, we set out to explore the trails on the South Rim of the Grand Canyon. With a 4 year old and a 2 year old, things were a bit nerve wracking at times as we held onto them for dear life and cautiously peered over the edges of the many scenic overlooks. The views, of course, were incredible and we had a wonderful day.

March 2007

 Late in the afternoon, we packed up the car and started the long drive home. As I navigated along the winding, tree-lined road through the park, I suddenly realized something that I had been blissfully oblivious to during our drive down the same road the night before and it took my breath away. We were driving along the edge of a very, very high cliff. You know, the Grand Canyon. In the pitch black darkness the night before, I could not see what was past the shoulder of the road. In the bright sunlight of the afternoon, I was taken by surprise just how precarious our position had been the night before and we had no idea. In places, there was a safe distance between the road and the canyon but in others, all that separated the road from the cliffs was a couple yards of dirt and a few trees. Sometimes not even that. Even in the broad daylight, I found myself feeling nervous and white-knuckling the steering wheel as I drove along the road that I had so comfortably driven on the night before in sweet oblivion.

A couple hours down the road toward home, I again found myself driving in the darkness. We were hundreds of miles away from the Grand Canyon at that point, but as we approached a curvy, mountainous stretch of highway, I could not stop my mind from picturing how close the road through the Grand Canyon national park had been to the edge of the cliff. In the darkness, I felt like we were teetering on the edge of another cliff each time the light from the car's headlights was lost in the darkness off the sides of the road. Anxiety was my companion until we reached the familiar streets north of the Phoenix valley where I KNEW there were no cliffs!

Over the past couple of months, I've been living through a similar situation. Just like our trip to the Grand Canyon, I did not see this coming at all. While I'd love to be able to say that things have been just peaches and cream with Raya's baby sister, and while many things are drastically different for her than they were for Raya (in a good way), I am being reminded time and again that my life and my mind have been forever changed by my experiences with Raya. To put it simply, there are things in life that you can't un-learn, un-hear, or un-see. Once you have had your eyes opened to the fact that there are dangers lurking in the darkness off the side of the road, you can't forget them. The more you know, the harder it is to remember how unlikely you are to have any of those dangers befall you. Such is the life of a special needs parent.

I knew before Raya was even born that she would not be our last child. We had always planned on having 5 and we had a pretty good idea of when we thought baby #5 should join the family. When life got crazy with Raya's medical issues, I started to wonder if we would be able to have another baby or if that would just be too much to handle. As things started to calm down enough to start talking about it, I realized that being pregnant and having another baby was going to be different and difficult after what Raya's life had been like for me up to that point. I was right.

When you're driving along side the Grand Canyon, once you've seen it in the daylight, you can't forget what it looks like. Similarly, once your eyes have been opened to all of the things that could go wrong in a pregnancy and after the baby is born, you can NEVER forget. You can never go to a prenatal checkup without your heart leaping into your throat at the slightest delay in locating the baby's heartbeat with the doppler. You can never forget hearing stories from friends of the devastating news they got during the 20 week anatomy ultrasound, and you almost forget that you're supposed to be excited for that ultrasound because all you want to know is that everything that's supposed to be there is there and that it's where it's supposed to be. You will also never refer to the 20 week ultrasound as "the gender ultrasound" again because you now understand just how much more there is at stake during that appointment. You panic every time you realize you're still not feeling the baby move like you think you should be. You breathe a sigh of relief when you hit 24 weeks because you baby is now "viable" and with each week that ticks by, you relax a little bit more. Until you get close to the end of the pregnancy and think of your friends who lost their babies to cord accidents in the last 2 weeks of a pregnancy. You can't help but wonder when you're awake half the night with leg cramps and heartburn whether or not your baby will be born healthy but you also know that just because your baby seems healthy at birth, it does not mean that there is not some unknown medical condition lurking in the shadows. Being asked constantly if there's a chance that your baby will have what your other child has does not help, even though you know that nobody means you any harm or distress by asking. It only distresses you because you can't stop asking yourself the same questions. I know this all sounds morbid, but like I said, once you know things, you can't un-know them.


Piper and me just a few minutes after she was born
It continues once the new baby is born. You can't help but examine every detail of your newborn and wonder if things you're noticing are of significance or not. Is that a sacral dimple? Is it high enough to potentially be a problem? Why won't she latch on? Are you SURE her tongue doesn't need to be clipped? Did you hear that funny sound she was making while she drank her bottle? Is she snoring? Why does she cry so much? Reflux again?? Is that shade of blue acceptable or should we be concerned? Is her torticollis bad enough to need physical therapy or can we deal with it on our own? How much longer do we wait to see if dietary changes are enough before we start her on reflux meds? Should we start with an H2 blocker or go straight to a PPI? Are all those loud breathing noises normal or does she have laryngomalacia?

The questions never end. Logical or not, it is nearly impossible to shut off the part of my brain that now knows so much about so many medical conditions that I was blissfully oblivious to when my other babies were born. Back then, those things only happened to other people. Once that wall of naivety comes down, you can't put it back up. Instead of being able to overlook things that I used to not realize were potential signs of trouble, I am now overly sensitive to them. Logically, I can talk myself down and know that things are fine, but there is always in the back of my mind the knowledge that certain things I've observed over the last 2 months are not normal. They may not be harmful, but they are not normal. Before, I could have ignored them but now, they are constant "what-ifs". "Normal" has eluded me when it comes to looking at my children's health and I will probably never get it back.

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In most ways, Piper is doing great. Developmentally, she's perfectly on track. She just turned 2 months old on Monday and is at a comfortable 25th percentile for weight. I think she may actually be our biggest 2 month old. She is tracking objects with her eyes, making eye contact, smiling, responding to voices, and is just plain adorable. She has had her share of feeding difficulties and reflux, but so far everything seems manageable without the kinds of interventions we've had to take with Raya. She has torticollis and a touch of congenital plagiocephaly just like Raya and Kaida, but so far they seem manageable too. She has done things that have stressed me out and she has done things that probably SHOULD have stressed me out but didn't.

On Monday, she had her 2 month well-check. It was her 3rd pediatrician appointment since she came home from the hospital at 2 days old. Just like in the first 2 appointments, I came in with a list of concerns to discuss with the pediatrician. I explained to him the symptoms I've been seeing. I've kept pretty quiet about Piper's health on the blog and social media, but that doesn't mean I haven't had concerns. For starters, she has reflux. Hers is worse than Ashtyn's and Kaida's but not as bad as Raya's. Close, but not quite. She is not projectile vomiting like Raya. Thanks to the fact that she is still unable to nurse due to poor suck-swallow-breathe coordination, she is getting plenty of milk and undoubtedly keeping more of it down than she would be if she was nursing, so she is growing at a good rate. She doesn't swallow correctly. Her swallow is not dangerous, meaning she's not aspirating (or at least she hasn't gotten sick yet so we don't believe she's aspirating), but she has had a hoarse voice for over a month and for a good portion of the day and night, her breathing sounds "wet" due to liquid pooling in her throat either from drinking her bottle or from refluxing and not swallowing it all back down right away. Aside from the wet breathing, she is also a loud breather and makes other noises that are not due to liquid pooling in her throat. Sometimes those sounds leave her gasping for air and cause her to reflexively throw her arms out as newborn babies often do. Other times, she has reflux episodes that cause her brain to reflexively protect her airway by closing off her larynx to prevent aspiration of stomach contents, which in turn causes her to momentarily stop breathing until she's able to clear the liquid from above her airway. Sometimes when that happens, her oxygen levels drop briefly and sometimes her lips start to turn blue.

As I discussed all of these things and a few others with the pediatrician, he assured me that everything I was describing fit the bill for reflux. It's all "within normal limits" and is par for the course with reflux. I knew that. I felt stupid. It's hard to really explain why, but I felt stupid. Probably because the logical part of me KNEW that the answer was reflux even though I still can't shake the "what-ifs". This poor doctor probably thinks I'm a total hypochondriac and heaven help us if Piper ever DOES have anything wrong with her because he may have a hard time believing the mom who cried wolf. For the first time in as long as I can remember, I had to fight back tears as I left the appointment because I felt like something in my brain has broken and will probably never be fixed. Having a child with chronic medical issues DOES change you, even on the most basic levels. I often find myself wondering if I will ever be able to live without feeling like I'm waiting for the other shoe to drop.

I know this paints a pretty gloomy picture but I promise, I'm not depressed and I really do love my life. This is just one of the struggles of having a medically complex child that is not talked about much, probably because it's so difficult to explain. As with any struggle though, there are beautiful blessings to be experienced, much like driving alongside the Grand Canyon on a bright, sunny day. I have learned to appreciate things now that I would never have noticed before, like the simple pleasure of a 4 year old child getting the rare opportunity to lick the beaters after we found enough safe ingredients and a recipe to make allergen-free cookies and frosting for her to try.
Sometimes you find yourself caught off guard by a simple little moment that takes your breath away, like walking back into the kitchen and finding said 4 year old crouching on the floor with a mixing bowl, devouring what was left of the frosting. You can't get upset because you know the struggles that are represented as you watch her willingly get her hands and face messy as she hurriedly scoops in the frosting with her bare hands. And EATS it. With her mouth. Without gagging or vomiting or having an allergic reaction. You're so happy for her that you don't even care if she gets it all over the floor and ruins her white shirt with chocolate frosting.
The road may be full of nerve-wracking twists and turns alongside a vast canyon, but the view is truly beautiful. ♥

3 comments:

  1. This is an amazing post! I have the same fear for my next child since my first had heart surgery and a feeding tube for 6 months. I call the dr way too often, he even mentioned how we don't go a week without talking lol I'm overly paranoid but it's very hard to go back to "normal". I even questioned if we should have anymore children but I feel like my daughter deserves a sibling. Anyways, loved the post, couldn't have said it better myself.

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  2. Brandis, you are an amazing writer! I love this post! So true! You are also an amazing mommy! That's so awesome that Raya licked the beater and bowl! She is so cute!

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