Expect the Unexpected | Welcoming Piper Ann

A failed newborn hearing screen. That’s how it all started. When Piper was born, she did not pass her hearing test in the hospital. The nurses and doctors didn’t seem overly concerned. Of course they told us the risk of hearing loss, but said that many times babies have gunk in their ear canals and it can work itself out. We were told to have a follow up hearing test when Piper was about a month old. Other than that question mark, we left the hospital as clueless as the next set of new parents with a healthy baby girl. During the following month, we were worried, but tried to not think the worst. But alas, the next test indicated that her hearing hadn’t improved. Again, we were scheduled for another follow up test…

In the midst of these hearing tests, I was on maternity leave and we were enjoying all the newborn snuggles we could fit into each day. We were so happy, but thanks to hormones and sleep deprivation, I was crying almost daily with the stress of getting baby on a sleep schedule, Mike going back to work, and stressing about how we would juggle everything when I went back to work myself. As Piper grew, we began to notice other things that seemed concerning. Things like not making eye contact or smiling, lack of muscle tone normal for her age, and no interest in rolling or grabbing at objects. Deep down, we knew something else besides the hearing loss was going on, but we just didn’t know what.

At first, we didn’t know if Piper’s hearing loss was congenital and isolated, or linked to a genetic diagnosis. We began meeting with various specialists while we awaited genetic testing. These appointments were beginning to give us more pieces of information, but no concrete answers.

When Piper was around four months old, she began having feeding issues. She wasn’t getting enough milk at feedings, and began coughing/choking often. We met with another doctor who indicated that she thought Piper had a ‘tonal issue.’ The doctor said that Piper was showing as a 1-2 month old in her abilities even though she was twice that. I had no idea what this meant at the time. She said we needed to meet with Nuero Development. Again, no idea. I quickly discovered that the doctor was indicating that Piper most likely had a neurological difference that was causing her muscle tone issues, at a minimum. We were scheduled to meet with a neurologist, who ordered a brain MRI. And that’s when everything truly changed.

Piper’s MRI showed that her brain is ‘severely’ underdeveloped. We had so many questions. What did that mean? How did this happen? Why didn’t anyone see this on the pregnancy ultrasounds? Is she going to be able to walk/talk/eat on her own? Is this likely to happen again, if we try to have more children? All of these questions were met with non-answers. Because the brain is such an incredibly complex organ, even the most brilliant doctors cannot predict what a child with Piper’s differences will be able to accomplish.

I’m not going to lie, hearing this news was the most surreal experience I’ve ever had. How could this be real? She is so perfect. She is an angel. She has such a personality. I just didn’t get it. Mike and I were on a constant rollercoaster of emotions for weeks. Realizing the likelihood that Mike and I will never be empty-nesters. Trying to grasp the reality that Piper may never be able to say, “I love you, too.” Wondering who she will grow up to be.

Piper’s story is a complex and long-winded one, one that ends with a cliffhanger in that we still don’t have a clinical diagnosis…and have been told that we may never get one. At 6 ½ months old, we are currently awaiting a third round of genetic testing called whole exome sequencing. Although it is possible that there is a genetic factor at play, the first two rounds of testing all came back normal. The team of radiologists that have reviewed her MRI agree that her brain indicates a ‘trauma or event’ that occurred very early on in my pregnancy. This could be a number of things – a loss of oxygen flow for a short period of time, a stroke-like event in utero, a virus I contracted and passed through the placenta, or who knows what else. All this being said, it is likely that part of her diagnosis will fall under the umbrella of cerebral palsy (again, not currently diagnosed). She has hearing aids and has already shown progressive hearing loss. She is rocking a helmet to aid her flat spot. She has a small hole in her heart, called atrial septal defect. It is unclear if she will need glasses (but praise God, her eye contact is getting better each and every day). She is now two weeks post-op from having a feeding g-tube placed. She had a lip and tongue tie taken care of, as well as ear tubes placed. As you can tell, she certainly loves her accessories. And this is all by 6 ½ months old. All during a global pandemic, where only one parent is allowed to attend most of these appointments. We don’t know what the future holds, but we are so ready to love her and take care of her through whatever comes our way.

Through all of this, my faith has only deepened. It would be so easy to become bitter and depressed (I’ve had my moments), but I have peace knowing that Piper is meant to be our daughter. God created her exactly how she is supposed to be. No matter how scary the unknown may be, we would choose to have our Piper over and over again. She made us parents. She is a part of us. “Before I formed you in the womb I knew you. Before you were born I set you apart.” Jeremiah 1:5

Our family, friends, and work family have shown up for us so much through this. We are so grateful to be living in Michigan, close to family who are more than willing to step in where needed. Grateful for friends that check in to see how we are doing. Grateful for an understanding company that has encouraged us to put family first and take care of Piper’s needs as we learn how to navigate this new kind of life. Grateful to live 15 minutes from one of the best children’s hospitals in the state. We feel supported, and that is incredible.

This experience has already taught me so much. I have no idea what the future looks like with Piper. I question things daily. Will we have to buy a new house with bedrooms on the main level if Piper can’t walk? How long will she be able to attend a typical daycare? Will she learn to feed herself? What school will she need to attend? As a planner, it is so hard to quiet these questions in my mind. It is impossible to know these answers. “Taking things day by day” has more meaning than ever. Every life is a miracle, and we are beyond grateful that Piper is our little girl. Because of her differences, each milestone she hits, no matter how delayed compared to neurologically average children, will be a million times more exciting because everything that she learns to accomplish truly is a miracle.