Does anyone ever know the answer to this question? You can walk and walk in life, taking small steps of faith and one day it all comes flooding at you. “How’d I get here?”

For a few years now, this question has hit me every once in a while about our life. My husband, Tim and I live in this perfect little town that we love. He works for Young Life and we get to be a part of its beautiful mission and its beautiful community. We’re surrounded by blessings in this little life. A strong marriage, a joyful little girl, a place we love (mountains + small + community), people we love, and life is just good. Often, I’ve asked in wonderment “God, how did we get here?”

The truth is God brought us.

God brings us along and places us in the perfect place. We’ve been so blessed by this time in our life and I often wonder why? Why did you bless us so? One answer is that God desires to bless his children. When we follow the steps he’s leading us to take, then we will be blessed. The other answer comes from Esther.

“…And who knows but that you have come to your royal position for such a time as this?”

God has brought us to this place and blessed us with this community for a purpose, and now, I believe it’s because He knew we would need it.

About a month ago we learned that the baby girl growing inside me has a cleft lip and palate.

Fall_Farm_Wedding_0167
What may appear to be her open mouth is actually indicating her cleft.

At first, we were so confused we didn’t know what to think. We knew nothing about what that meant for her life. We knew that she would have surgery in the first year of life and we knew that feeding would be difficult. But that was it. At first, we focused on thankfulness. We remembered that her organs looked good, her heartbeat was strong, and her development was perfectly on schedule. So, we thanked God.

Then, as time marched on, you know, like an hour, we grew sad. Sad to think our sweet girl would look different than we imagined. Sad to think that she will have to undergo surgery at such a young age. Sad that her early life will not be what we expected. This sadness passed, returned, and passed again, while new emotions and questions came into our minds. So many questions. So many emotions. I know now, that joy and sadness will wax and wane as we face new challenges and new milestones.

Fall_Farm_Wedding_0169

This past Monday we had our first appointment with the Cleft team (Speech Pathology and Plastic Surgery) at UVA’s Children’s Hosptial,  (our new home). The appointment was informative, helpful, and overwhelming. Here’s what we learned:

  • Baby girl has a complete unilateral cleft lip and palate. This means it’s only on one side of her mouth and that the cleft goes all the way up to her nose. The ultrasound shows that her cleft is fairly wide.
  • She will have 2 surgeries in her first year of life. The lip repair will take place around 3 months and the palate repair between 10 and 12 months.
  • Feeding will be a challenge but this is, of course, the first priority for the cleft team. The cleft palate makes it impossible for babies to suck, so they’re unable to nurse or take a bottle like a non-cleft baby. Because of this, we plan to deliver at UVA so we can have the best access to feeding experts.
  • Tape is often used on babies’ upper lip to pull the sides of the mouth together. The tissue is so malleable at this age, that the gap can be narrowed. Think of it as a large butterfly strip pulling each side closer together. Baby girl will likely have taping for months before her first surgery.
  • 95% of cleft babies will have tubes in their ears–tubes are likely and ear infections may be common.
  • The average number of surgeries for a cleft lip and palate baby is 3-4 over the course of their life (birth-21). Some may have less, some more. At any given time, there is no way to know what she may need in the future.
  • Most cleft babies will need speech therapy.
  • Baby girl will be monitored throughout her life, which means many doctors appointments and medical attention, everything from palate repair and lip adjustments, to orthodontics and hearing screenings.

Cleft lip and palate is a lifelong journey.

This has been the biggest news that shook me to the core.  For the past month, I think we naively believed that, for the most part, this cleft story would be a short one, a year, maybe two. Instead, we discovered that a cleft story is a life story, a family story, our story.

Fall_Farm_Wedding_0170
Our Plastic Surgeon gave us this timeline to show what lies ahead.

This is no mistake. Our girl is being “woven together” by the majestic hand of God and is being created perfectly. She is exactly who she is meant to be. And our family is exactly where we are meant to be.

We have a long road ahead; a new normal. But I am confident that God has shaped us for such a time as this.

Fall_Farm_Wedding_0168
At our very first ultrasound, baby girl kept her hands up by her face for most of the ultrasound. The diagnosis was later confirmed at a followup ultrasound at UVA.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s