Beau is #cleftstrong

{{Warning this post is loooonnnnnngggg}}

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One year ago today we saw Beau’s sweet little “yawn” during our routine 20 week ultrasound and everything changed.

I was busily blabbering to the ultrasound tech about how much I loved these appointments and leaving with reassurance that we had yet another healthy and wild baby on the way when Chad noticed she had gotten quiet and was spending longer than normal looking at the baby’s face.  He finally asked if she saw something and was met with a “Well…”.  He then asked if it was the baby’s mouth and face.  I have no idea (and neither does he really) how he knew this.  I know ultrasound techs aren’t actually supposed to tell you when they see something, but I am so grateful for the very honest and compassionate girl we had that day.

Let me tell you, of all of the things I might have worried about during my pregnancies, a cleft lip and palate were never one.  At 30 years old, I {thought} I had never seen a person with one.  My only reference to a cleft were late night infomercials for Operation Smile or other organizations helping children in 3rd world countries.

We have no family history…I took no medication while pregnant…so when the ultrasound tech said “Cleft lip and palate”, I felt the air completely go out of me. I was totally shocked.  She then left the room and said she would go get the doctor.

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I have always loved my OB, but this day I loved her more.  She hugged us…for a long time.  I knew she had people waiting to see her but she just stayed and comforted us.  Still stunned, but needing answers, she answered what she could and immediately started making calls trying to get us into specialists so we could get a better idea of what we were facing. {I used to complain about wait times at doctor’s offices, but now I tell myself that maybe someone is with the doctor receiving bad or unexpected news, and that I would gladly give some of my time for them. I am sure I made many people wait that day.}

The hour drive home that day was extra long.  As a mom, there is nothing more upsetting than the thought of something happening to one of your kids.  I was sad, mad, scared, confused and oh so worried.  I didn’t know ANYTHING about clefts but knew this baby would have medical issues, require multiple surgeries, and some major speech therapy.  I was worried he would be “labeled”, especially since we live in a small town.  I worried he would always feel less than, or not as beautiful, or embarrassed.  I was worried at what other health issues he may have (A HUGE worry of mine).  I worried and worried and worried.  But I also researched and researched and researched.

So many doctors and websites told us about great “cleft support groups” or that this baby could still live a normal life and be successful. They said he would have a child psychologist on his team of doctors. I remember all of that making me more worried.  I’d never needed a support group…maybe this was way more serious than I thought.  And I assumed this baby would live a normal and successful life..but then why was everyone making a point to say that? And a child psychologist? What? I was overwhelmed with worry for this baby. As soon as I could, I started looking for his team of doctors.  I needed to focus on what I could do to help him.

I planned on meeting with several surgeons {all over the country if I had to} to find the very best. First on my list was a surgeon at St. Louis Children’s Hospital (thankfully only 3 hours away) who was published as creating a new palate surgery that had speech success rates going from 50-60% to 90-95%! I made calls, sent fruit baskets and pleaded with nurses to get us in as soon as possible. We met him, and after spending an hour with him, I was done searching.  He was a perfectionist and clearly dedicated.  He was well educated and connected. He was also a father of young kids so he understood some of how we felt.  His work simply spoke for itself.

This doctor, and St. Louis Children’s Hospital, were also big proponents of the NAM device. NAM (Nasoalveolar Molding Device) is a rather new technology that aims at reducing the number of surgeries necessary to correct the cleft and gives the patient a better outcome, especially with their nose, which is often the “tell” for kids with cleft lips.  It would involve daily tapings and weekly trips to St. Louis for adjustments.  We knew it would not be easy {especially with a 2 and 3 year old at home} but if it gave our kid the best chance, we were undoubtedly in.

By this time now, I had also met with multiple ultrasound specialists and we were fairly certain that the baby had a complete unilateral cleft lip and palate.  “Complete” meaning it ran all the way up through his nose, and “unilateral” meaning one side.  I think we probably had 10 ultrasounds after that initial one and in each and every one, he was holding his little baby paw right in front of his mouth.  We never got a super clear picture and couldn’t gage the severity of it.  However, after all the ultrasounds and tests, we believed that aside from the cleft lip and palate, he should be a healthy “normal” baby. Whew.

**interesting fact: A baby born with both a cleft lip and a cleft palate are less likely to have any other chromosomal defects or health issues than if they just had one.

We met with the NICU team at our hospital a month before he was born.  The fear was if the baby had difficulty feeding, we would be prepared (feeding tube).  Thankfully they have two specialists on staff that had come from large hospitals from California and had handled many cleft babies.  I felt confident in them and instantly felt like we were in the right hands once again.

Over the months, as we assembled our #teamBeau, my worry started to lessen.  I have always had a solid faith but decided during this pregnancy that I could get bogged down in all of this worry and fear, or I could pray, put it in better hands, and spend my energy on the positive.  I looked at Grant and Stella and started to see what a huge asset they were.  They were going to love this baby and going to build up his confidence and self esteem {thankfully they have so far surpassed my expectations as siblings}.  They would comfort him and stand up for him.  I looked at our friends and community and realized what an asset they would be in loving and supporting our boy.  I looked at our doctors and knew, in my gut (and you know how those mama guts are) that we found the perfect team.  I looked at Chad and I looked at myself and realized how much we would work to give him a solid foundation, open arms, and an insane amount of love.  We would help him to be self assure and have a “can do” attitude.  (All these things I hope to give to all my kids, but especially him) And to be totally honest, I {almost} stopped worrying.

Then the day came, November 24th, Beau’s birthday.  With our team in place, we met our little guy that morning.  The second I heard that cry, I cried.  I felt this HUGE, indescribable sense of relief and happiness.  He was here. He was healthy. And he was the most beautiful baby I had ever seen.  We had been so worried about how others would see him, and I was worried about how Chad would feel, how I would feel…but instantly, we were connected and the only way to describe him was ‘perfect’.  It was a “severe unilateral cleft lip and palate” is what the NICU doc told me when they whisked him away to weigh him.  His right side was a 10mm cleft involving his nose and palate.  Thankfully the specialists we had met with earlier taught us how to feed him and he was a champ! {Shout out to the friendly people at Doctor Brown’s Bottles who hooked us up with their latest technology for bottles that were not yet out on the market}.  Beau spent no time in the NICU, no feeding tube, no extra care needed.  I knew then that this boy was tough.

Chad and I originally talked about waiting on sharing pictures with those other than close friends and family.  I had been worried about initial images of him sticking in people’s heads forever and him always being looked at differently.  But you know what, when God gives you a baby that is as beautiful as Beau, with a spirit like his, you blast that baby on Facebook to share with the world 🙂 We were proud.  Fears gone. Worries gone.

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A week after he was born, we started our weekly trips to St. Louis.  Those were easily the hardest 4 months of my (and hopefully Beau’s) life.  His NAM gave him sores, and weekly adjustments caused discomfort.  He was a good baby but required to be held upright, facing out and walked…all day.  I think I wore treads in our wood floors from the laps I put in with Beau during those winter months.  He had reflux and gas (partially I think from that device and how he drank with his cleft).  We tried meds but I think biweekly adjustments from a chiropractor made the greatest difference.  So we spent those first 4 months walking, and trying to care for Grant and Stella without being too short with them rom the lack of sleep.  Beau ate very little at a time and wanted to eat every 2-3hours around the clock the entire 4 months.  The retaping each day turned his soft white baby cheeks red and irritated.  As his mom, there isn’t much that is more heartbreaking that seeing your baby in pain or discomfort and not being able to “fix it”.  I wanted to quit the NAM several times and throw it out our kitchen window (and we came close some nights), but we would remind our selves that hopefully these short months of discomfort would give him a better outcome for life.  That ‘highschool Beau’ would be happy we did it.  And we were lucky in that our pediatric dentist that created his NAM had the biggest heart of any doctor I’ve ever met.  I called and texted him regularly and he met us on weekends when necessary to adjust whatever he needed to make Beau feel better.  He was caring and compassionate and believed in what he was doing for Beau.  So we believed in him.

{{In hind site, I think it was a lot of the gas/reflux that really caused Beau pain, and not the NAM}}

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Well finally those 4 months ended and Beau had his first of likely four surgeries.  I had really come to love that big ole grin he had when his NAM was out (1 hour break each day).  A part of me was devastated to see it go.

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The next time I saw Beau, I hardly recognized him.  He was swollen, shiny, and looked so different.  Two weeks with nasal stints and then he was free from it all! {Brings happy tears to my eyes even has I type this now, months later, because I can remember what a giant relief it was for all of that to be over}.

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We were blown away. We are still blown away with the results.  If you didn’t know about his lip before, I honestly don’t think you would know now.  The scar is minimal, I think will make him look rather tough.  And his nose is beautiful! Oh and that smile…that big ole grin has come right back.

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Beau is the happiest, easiest going baby I have ever met.  And I’m not just saying that because I am his mom.  He lives life happy and laughs big.  He has a brother and sister that love him crazily and build him up, include him and don’t see him as different at all.

I knew we would have a battle ahead of us with Beau (and still do) but to know him, is to know that he has what it takes to be who he wants and do what he wants.  I wish I could go back a year and tell myself that it’s not all going to be ok…it’s going to be so so so great.

***Why I hash tag  #cleftstrong***

I was fearful of labeling Beau “that cleft kid” when I was pregnant, and still never want to, but I often hash tag “cleftstrong” on his pictures and let me tell you why.  If you google “cleft lip” (which we did right away when we found out about Beau), to be totally honest with you, the images were frightening.  We searched and searched for before and after pics on the internet so we would know what to expect.  There simply isn’t much out there.  Well the day Beau was born, a college friend had just learned a few days prior that her third child would be born with a cleft lip, and like me, she was worried.  But then she saw Beau’s pic on facebook.  She said seeing his picture calmed her.  She reached out, we talked and texted a lot.  Her sweet girl is now wrapping up her NAM months with Beau’s same doctors and surgeons.

I’ve had other mom’s reach out through instagram that seeing Beau’s pics now bring them hope for their babies, and that their child can be healthy and happy!  So I will continue to hashtag cleftstrong because Beau IS cleft strong.  And if I can help one mom, or family, that is worried or frightened about an ultrasound that goes unexpectedly, then it’s worth it.

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