The Road to Diagnosis Pt. 1

Fifteen. My parents were married on the 15th of the month, I was born on the 15th of the month, and it’s no secret that taxes are due on the 15th of every April. I got my first cell phone and had my first boyfriend when I was fifteen years old. I’ve lost and gained the same fifteen pounds more than once over the years and I’ve easily been to Destin, Florida fifteen times, probably more. I’ve been out of high school almost fifteen years (excuse me, what?!). As I started composing this first post in my head, I’ve wracked my brain for any time in my life that that number has been as defining or significant as the last fifteen months have been and, as you can see from my measly list above, I didn’t have much luck. The truth is, nothing has tested me, taught me, stretched, or grown me more than the journey that began on March 15th, 2019.

Landry was born early in the morning weighing a perfect 7 lbs. 14 oz., a scheduled C-section following a long, not-so-pleasant pregnancy. I’m not one of those women that love being pregnant and I’ve always felt a little bit of guilt surrounding that, but the last trimester of my pregnancy with Landry only reiterated it. At 20 weeks, it was discovered that I had above normal amniotic fluid levels (polyhydramnios). Although it was uncomfortable – weighing 5-6 weeks ahead for my entire third trimester uncomfortable – it was nothing that my doctor was too concerned over. We kept a close eye on Landry through the end of my pregnancy with weekly ultrasounds and NSTs. Landry was not an active baby in the womb; she went long, worrisome stretches without movement so we had to regularly check in on her. In hindsight, the decreased movement combined with increased amniotic fluid was probably an indication of a genetic anomaly. I did question this a few times, but when my doctor wasn’t worried, I chose not to worry either.

When Landry was born, she did not cry for the longest time. OK, it probably wasn’t that long, but when you’re expecting that first sound of life from your new baby and it doesn’t come… it sure seems like a long time. I wish I could tell you more about these first few minutes of Landry’s life, but as emotions got the best of me, I was given something to calm down and I don’t remember them. I found out later that Landry did require some resuscitation at birth, but if a reason was ever known, it wasn’t given. Her first APGAR score was only 4, but she quickly rebounded to 7 and 8 at 5 and 10 minutes, respectively. The fog started to lift and I vaguely remember bits and pieces of the recovery room. As I took in the the tiny features of my sweet new baby, the trauma of her birth seemed to melt away. The rest of our stay in the hospital was filled with all the moments I had been looking forward to: Pete announcing to grandparents in the hallway that we had another girl, the perfect balance between visitors and alone time, sisters meeting for the first time, and just a general soaking up of all the newborn deliciousness.

We brought Landry home on a Monday, Chandler came home from my parents’ house on Tuesday, and Pete went back to work on Wednesday. The adjustment from one child to two went mostly better than I expected, but I will never forget the day Chandler stuffed a tiny, newborn Landry into her baby doll pram and rolled her into the other room before I realized what was happening. I was sure that I couldn’t handle this and Pete needed to come home for the day. Update: he did not come home for the day, Landry was fine, Chandler never did it again, and I was, in fact, perfectly capable of keeping them both out of harm for an entire day. The rest of her first few weeks were pretty uneventful. We did the doctor’s appointments, we did the first few outings with two kids, and we settled pretty quickly and easily into the new dynamics of a family of four.

One week turned into two weeks, blurred into six weeks, and before I knew it, we were two months into Landry’s life. Things seemed to still be going mostly as planned, but about this time I started noticing that Landry wasn’t starting to make any eye contact and that she had a bit of a “lazy eye.” Not a big deal to me at the time, but something that I brought up to our doctor at our two month well baby appointment. She was not concerned, said that it’s too early to tell much of anything in the eyes as they are still focusing. I left that appointment satisfied with the explanation and breathing a small sigh of relief. I decided that I would keep an eye on it (truly, no pun intended) and bring it up at our four month visit if I needed to.

It was in Landry’s third month that my worries about her development started and, along with it, came a sometimes overwhelming sense of uneasiness. By this time, Landry was not making any eye contact, not changing any facial expressions, not holding her head up, and still not moving her limbs much on her own. She was not starting to track objects or follow me out of a room with her eyes, her feeding difficulties were not improving, and she was so content that it was almost alarming. People would make comments that she’s the best baby they’d ever met or they didn’t hear her make a sound. This was true, but seeing it daily as her mom, it was starting to seem like something beyond just being a content baby. Please don’t get me wrong, we loved her and appreciated her for exactly what she was, a sweet, easygoing baby. She got plenty of love and attention, but I started to just get a gut feeling that things weren’t progressing as they should be with her development. My plan was to keep a list of my concerns and carry it with me to our four month check up so I could bring them up and not forget anything.

Our appointment rolled around (July 17th, 2019… don’t ask me how I remember that) and I carried Landry and my list into the office. I remember telling myself on the way in that I couldn’t minimize or forget to bring up my list of concerns. I even gave myself a pep talk: your concerns are valid, you’re not taking up too much of their time, if you don’t ask questions about her development, no one will. Little did I know, however, I didn’t have to bring anything up. The exam started and, in that moment, I saw the concern written all over our pediatrician’s face. All of what I thought I saw in Landry’s development, or lack thereof, was confirmed without me even saying a word. This, of course, was terrifying and, in the moment, I felt an almost paralyzing fear. I felt the urgency and gravity of the situation as our pediatrician rattled off referrals we needed: neurology, genetics, physical therapy, early intervention, ophthalmology. My head was spinning and eventually I cried, right there in the room. All I could hear was a big list of the things my baby wasn’t doing that she should be at this point. My perfect, sweet, content baby wasn’t developing typically and now, it was alarming to more than just me.

We left the office that day with the small beginnings of a game plan, referrals to doctors I never dreamed we’d need, and the support of the most amazing pediatrician and nursing staff. My list of concerns transformed quickly into a list of to-dos and follow up calls. And, I won’t lie, for a brief moment, my world felt a little bit like it was crashing down around me.

You always hear that hindsight is 20/20, but if you had asked me a year ago if I would ever look back and see the silver lining in that day, I would have laughed at you (or probably cried because I don’t remember being in the mood to laugh). But here I am, a year, almost to the day, after that first appointment and I can honestly say that I see the silver lining. I see a mom who needed to have her concerns validated, I see a mom who needed to know that she knows her baby better than anyone else, and I see a mom who needed to know that her opinion matters. Of course, that day I walked out of there terrified and, honestly, just sad, but with those initial emotions behind me, I can see that I actually walked out of there empowered. Empowered by my own mom and our pediatrician who, not only believed me, but believed IN me. What felt devastating at the time, and truly was – I would never write off those feelings – was actually the beginning of me becoming the woman and mother God intended me to be for my family. It was the first step, albeit a shaky, fearful one, on a journey that I never, in a million years, thought I would walk, but has turned out to be beautiful and rewarding as much as it has been difficult and exhausting. It’s a journey that I can’t wait to share with you.

I’m honored and excited that you’re here as I continue to tell the story of our road to Landry’s diagnosis and beyond. I plan to be an open book in hopes that our story can be a blessing to someone else. I absolutely will welcome and happily answer any questions about our journey or Landry’s diagnosis. If you want me to elaborate on anything at all, please just ask!

xo – Lindsay