Perfectly Imperfect



We have all heard that no two snowflakes are alike. Each snowflake takes the perfect form for the maximum efficiency and effectiveness for its journey. And while the universal force of gravity gives them a shared destination, the expansive space in the air gives each snowflake the opportunity to take their own path. They are on the same journey, but each takes a different path.

Along this gravity-driven journey, some snowflakes collide and damage each other, some collide and join together, some are influenced by wind...there are so many transitions and changes that take place along the journey of the snowflake. But, no matter what the transition, the snowflake always finds itself perfectly shaped for its journey.

I find parallels in nature to be a beautiful reflection of grand orchestration. One of these parallels is of snowflakes and us. We, too, are all headed in the same direction...We are all individuals taking different journeys and along our journey, we sometimes bump into each other, we cross paths, we become altered...we take different physical forms. But at all times we too are 100% perfectly imperfect. 

—Steve Maraboli

In mamahood, we all have the same destination — We all love our littles and want the very best for them. But each journey with our families looks a little different. As you've probably read, Valor's birth story was not like one you've heard of before. From the beginning, we have definitely been on an individual journey.

Our journey so far has been a hard one, but also an oh so good one! We started off knocking on death's door, but became a blessed little family of three. All of the hard things and all of the good things make me so thankful for the promise of a God who loves my baby even more than I do (hard to fathom). This brings me so much peace in the midst of fear and struggle. When we brought our baby Valor home from the NICU and received the green light from the neuro surgeon, I thought that we were home free. Wrong. So wrong. Maybe this is God's reminder that I am not in control, but he is.

Two Months Old


At Valor's two month well-baby visit I brought up a small concern (that I hadn't researched and didn't know it was a serious issue at the time) – that he preferred the right side of his head and there was a slight flatness. Valor always kept his head to the right, whether he was sleeping, being held or laying on the floor to play. The pediatrician completed the check-up and diagnosed Valor with torticollis and plagiocephaly.

Torticollis is basically an asymmetrically tight neck, keeping the baby's head to one side. Plagiocephaly is a condition commonly seen in preemies and NICU babies, where a portion of the head becomes flattened. This is often due to the fact that preemies have extra soft heads and are confined to their isolette. Valor's case was also irritated by his torticollis, constantly laying on the right side of his head and not rotating between the two sides.

With these diagnoses, we immediately started Valor in physical therapy at a local rehabilitation hospital's outpatient department. The goal for physical therapy was to treat Valor's head preference with positional adjustments. Over the last four months Husband and I have worked diligently on home exercises to help Valor work out his tight neck and side preference.

Five Months Old

Now fast forward to this month...We had Early Intervention come to our home to evaluate Valor's development. What I suspected was true...mama knows best...Valor qualified for weekly occupational and physical therapy (OT/PT) in our home. Thankfully all the work we've been doing daily with Valor has significantly helped his head preference, and now he has a full range of motion in his neck. But, I'm starting to realize if it isn't one thing, it's another. During the evaluation, Valor's plagiocephaly was brought up and suggested we go for a DOC band consult (a cranial orthotic or helmet). This is not what I wanted to hear. I knew, deep down, that Valor's flat spot, even though it was a little better, was still present. While Husband and I were hoping that the physical therapy and continual positional changes would solve the plagiocephaly, unfortunately this did not fully solve Valor's issues.

As a mama, you wrack your brain and think if there is anything else you could have done to help. No one wants their little one wearing a cranial band. Thankfully I know we've done everything within our control to help Valor's torticollis and plagiocephaly. Unfortunately the "Back to Sleep" campaign has been a huge culprit of plagiocephaly. On the one end, it has significantly decreased the incidences of SIDS, but unfortunately the rate of plagiocephaly has sky rocketed. This explains why more and more children are wearing these bands.

Cranial Band Consultation

Following Early Intervention's recommendation, I made an appointment for a cranial band consultation. At the appointment, an analysis of Valor's head shape was made with the use of anthropometric measurements and a photo study. Of course we were hoping that they would say Valor's case was mild, that he was fine and his head would round out as he got bigger. Unfortunately they classified his plagiocephaly case on the high end of moderate. The recommendation was that we move forward with the band treatment.

Insert a lot of mama tears here.

As we walked out of the appointment, tears filled my eyes. That is not what I wanted to hear. I didn't want my beautiful baby boy to have to go through a few months of having to wear a cranial band 23 hours a day. Would he be uncomfortable? Would it be life altering for our family? Would it destroy Valor's (pretty) good sleep patterns? Would my little one get strange looks in public? Talk about an emotional roller coaster. Knowing that my son needs to go through something else (again) that the average kiddo doesn't have to go through is heartbreaking.

Since the consultation, Husband and I have prayed and talked and talked and talked about the pros and cons of the treatment. We've talked to his pediatrician, neuro surgeon, physical therapist, family members and friends who we trust. What a difficult decision to make. Another major issue is that the treatment is not covered under our health insurance plan. Like all medical treatments, it comes at a big cost. Husband and I are still buried with medical bills from my hospitalization, Valor's birth, NICU stay and subsequent specialists visits. Valor has been blessed with the sweetest, most caring and loving great-grandparents. Not only do his great-grandparents pray daily for him, but they have made our decision much easier because they are paying for his treatment. With the financial burden erased, we've decided there are way more long-term pros than cons. Actually, all the cons we came up with were short-term. It breaks my heart knowing Valor needs this cranial band, but like any parent, we are choosing the best avenue for our son's future.

Cranial Band DSi

Since deciding to move forward with the band for Valor, the next step was to get the final measurements of Valor's head. The office used a state-of-the-art imaging system called a digital surface imaging (DSi) to capture a 360-degree image and measurements of Valor's head to accurately create his custom-fitted band.

We will be taking Valor to get his band on Tuesday — the day after his six month birthday. Great birthday present, huh?

Being confident of this, that he who began a good work in Valor will carry it on to completion, until the day of Christ Jesus. —Philippians 1:6

This journey our little family is on has been bittersweet.

Bitter because it has been so stinking hard. And sometimes, when I let myself go there..it has been downright unfair. Why did my appendix have to rupture, putting myself and baby's life at risk? Why did Valor have to come early and spend the beginning of his life in a NICU? Why do we have to take our little guy to four appointments a week (cranial band sizings on Tuesdays, occupational therapy on Wednesdays, physical therapy on Thursdays and Fridays)? But mostly, why does our little guy have to go through all this hard stuff while all his peers are hanging out at the park and having playdates? ...I could go on.

Sweet because this is our unique journey. Sweet because the hard stuff is just bonding us and strengthening our tiny family of three. Even though it has been incredibly hard and time consuming, we have the support of our family and friends.

When I get fixated on the bitter, I remind myself to be thankful that Valor is healthy and for the availability of services he is receiving. I know for sure that this is just a period in time and once Valor gets finished with the band and therapies, he is going to meet and surpass the goals set before him.

Stay tuned for updates throughout this journey. And for those of you following along with my "Project 365"...now you know why I've not been so faithful with the project!

And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for Valor. —Matthew 6:30

5 comments:

  1. Hold on tight to Philippians 1:6 - God is going to do amazing things in His name with Valor... and just by the definition of Valor's name, we all know that.
    Papa

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  2. If Valor is anything like our boys, that helmet is going to save him from more than a couple head bumps in addition to fixing the flat spot.

    One thing Megan and I have learned is that God provides the right help at the right time. When I look back on our trials I realize He was in charge and making things happen that we didn't even realize. Its pretty awesome to think that he cares about us enough to be involved in each of our lives so intimately. I believe He uses our trials to prepare us to do great things.
    Romans 8:17-18
    17 Now if we are children, then we are heirs--heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory. 18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

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  3. So well written and powerfully proclaimed this story is unforgettable. Valor will come out on top and you both will be given the grace you will need. Our God will make it so! Great Grandpa and Grama Wagner

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