Keep It Going

I write this as I gaze at my daughter, a little over three weeks old, lying on an infant warmer naked besides her diaper so that those caring for her can examine her head-to-toe.  She is attached to a ventilator that enters her body through her right nostril while medical gauze above and below her nose holds the tubing in place. 

Her mouth remains agape due to a combination of both gravity from the slight tilt of her bed & the positioning of the metal contraption on either side of her jaw.  The jaw detractor is in place with two pins that penetrate the skin just behind the chin and the hinge of the jaw, respectively. On each side of her face, those pins are connected by a long rod with brackets.  Beneath the skin is a surgical break on each side of the lower mandible so that, when the tool is used to crank forward the pin behind the chin, the entire lower structure of her face will move millimeters at a time. 

Everly has about 2 inches of medical tape under her chin hiding the scar where Dr. Matthews accessed her mouth and augmented muscles under the tongue allowing it to lay forward instead of pointing straight up.  Her open mouth reveals results of the surgery as the tip of the tongue can be clearly seen.  It was too far in the back of her mouth to see previously.  She has a string attached to her tongue that runs outside the mouth and secured to the right side of her face by more tape so that, if the tongue slides back and causes airway blockage, her care providers can easily pull it back up. 

Her right arm now has a PICC line, a more secure IV that runs through a blood vessel up her arm.  This stabilizes a pathway for the paralytic, narcotic, and fluids she receives.  Her heart and lung leads are still in place on her torso as they have always been since her birthday.  Another IV enters her left foot secured heavily by several layers of more tape.  This IV remains capped, ready in case the need arises to introduce more medication as her PICC line can only handle 3 mediums at a time. 
 
Her right leg has a reprieve from the oxygen lead and now only has identification anklets loosely fitted on it.  The oxygen lead is now attached to her left hand wrapped by purple gauze.  She remains supported underneath by a thick pillow filled with moldable putty that contours around her body giving support and preventing ulcers that could arise if there were more pressure points. 
She will be re-positioned every few hours while maintaining a pillow around the top of her head, protecting the device on her face from disruption. 

The nurses prick her heal every 12 hours or so to check her blood-gas levels, adjusting the ventilator's settings up or down depending on the results.  They will slowly reduce her drug dosages each day.  As of Sunday, Dr. Matthews will return to begin the process of slowly torqueing the detractor.  He will visit every day after that to review progress. 

I know that is a long, descriptive account of where we are right now.  I needed to get it all out.  I saw the relief it gave Lauren to write about everything and I, quite honestly, want to copy her.  The above was for me, I wanted to explain to others what I must see right now when I look at my daughter.  Now, I want to talk about everyone reading this post.

If you have gotten this far...wow!  You truly care about our family.  It is POWERFUL.  It is MEANINGFUL. It is GODLY.  Words of gratitude seem shallow and don't possess the ability to fully articulate the way we feel towards you all.  We have received so much love through messages, letters, prayers, gifts, and offers help in any way, that Lauren are overwhelmed...in a very good way.

We are not ashamed to ask for your continued prayers and support as we have experienced so abundantly your willingness to serve our family during this time.  I want to reiterate our sincere desire to reflect that same love back to you all.  Please let us know if there are prayers we can lift up for you as we pray over Everly.  We want to include you in our prayers as much as you all have been so diligent with including us in your own. 

In my opinion, whether you believe in Jesus as the Son of God and means of salvation or not, you are being Christ-like in the kindness you have shown to my family.  I can't say thank you enough. It is my deepest desire that everyone reading this will seek truth with an open mind and heart, considering The Bible as a source.   My faith and my own continuously maturing search for truth through Jesus strengthens my steadfast resolve that there is value in a relationship with God.
 
We are all inundated with examples of people spreading hate, callousness, and hypocrisy.  Not nearly enough do we see stories of pure unabashed love being spread without judgments or agendas.  You all are such a story. Lauren and I have a church family, particularly our community group, showering us with support.  Our local friends have been quick to unselfishly offer up time and resources to our family.  Across the country, we have family praying us through our pain and fear. 

Friends from college and high school, with years of silence separating us from being involved in their lives, have shown up in droves via messages of support.  Some going as far as telling us they will travel to Charlotte to help however they can.  What love!  What compassion!

I believe such actions reflect perfectly the message Jesus imprinted on the world.  My hope is that Lauren and I KEEP IT GOING.  Spreading the love you all have given us to others who need it.  I ask all who read this to KEEP IT GOING.  Even your smallest gestures and seemingly miniscule efforts can have enormous impacts on the recipients.  I have felt this firsthand. 

When I look back at how the first ecclesia (church) developed as just a gathering of people wanting to spread the love of Jesus, I ask "what is the big difference between them and the church universal now?  How did 5,000 people communicate the life of a carpenter's son so successfully that it became the basis of faith for most of the civilized world?"  I believe the answer is how they loved each other and others.  I see that towards my family now. So many people showing so much love, what if we could magnify that to the masses?  How would the world's view of Christians change? If everyone simply identified Christ-followers by how we love each other and others, wouldn't that draw more people near?  Wouldn't you want to be a part of that faith family?  There is warmth and comfort knowing so many will always be there to support us.  I want the same for all my loved ones.

So, to sum up this seemingly endless essay, KEEP IT GOING.  It's a charge I put on myself.  It's a request I ask of you all.  The amazing love you have shown my family, KEEP IT GOING.  You will impact those in your life in ways they will never be able to express...not even in a very loooong blog.  :)

God bless every single one of you. 

 

Open Invitation

Many of you who will read this have been diligently keeping up with my wife's blog.  She has done and, I'm sure, will continue to do an amazing job articulating our circumstances and intimating our emotions as we go through what has been one of the darkest season of our lives.

I encourage everyone willing to read her updates as well.  http://thenotsosmallings.blogspot.com/

As a brief synopsis for those unaware of our situation, Lauren and I officially became first-time parents of a beautiful baby girl that we named Everly Lynne on January 8th, 2014.  This date is meaningful in so many ways as it was the exact day, three year prior, that Lauren and I met for the first time. 

Lauren had a C-section as it was predicted that Everly was going to be a sizeable newborn and thus a safety concern for both mommy and baby for natural delivery.  Evie gave us our first shock as parents when she came into the world at a mere 8 lbs 3 oz...3 lbs below the original guesstimation! 

Our second shock was the abundant dark hair she was sporting.  Only about fifteen minutes later, shock number three came as nurses began noticing that Everly was having difficulty breathing.  Someone threw out the term Pierre-Robin Sequence, but the phrase sat stagnant in the air, no one addressing it further possibly out of fear of explaining what that meant to the parents of this brand new baby or simply because no one quite new what the condition truly entailed. 

It has been a crazy three weeks since, filled with struggles, false hopes perpetuated by misdiagnoses, and crushing blows as Lauren and I readjust our expectations upon learning Evie's PRS is more severe than what we were originally told. 

While in the midst of this struggle, obviously Lauren and I spend an immense amount of time in thought and prayer about our sweet baby.  This is, of course, understandable and natural.  However, I feel we'd be remiss to not take moments to recognize and lift up those people in our lives that are going through their own struggles. 

Lauren and I love a God that cares for all of the approximate 7 billion people on this planet!  To many, it's hard to fathom that a God  wants to be and can be personal and relational with so many individuals.  However, our God, according to The Bible, made EVERYTHING.  From vast galaxies to microscopic organism, our Heavenly Father created it all.  He has the omniscience to know every detail of His creation.  He knows how many hairs are on Everly's head...and they are abundant! 

If we truly ascribe ourselves to the ways and teachings of Jesus as we claim to do, I believe we must, as much as we can, care for others as Jesus did.  While we can't reach out to 7 billion, Lauren and I can reach out to the thousands of people we know...many of whom have showered us with so much love and support in our time of need. 

It does well for our souls to include friends and families in our prayers along with those we lift up for Everly.  In some ways, I feel closer to God than I ever have before.  I long to talk to Him, and I speak for Lauren and myself when I say we desire to pray for anyone else who wants/needs us to do so. 

Hence, this is our OPEN INVITATION!  Please email/call/text us with anything that is on your heart.  Your struggles, fears, and worries will be lifted up along with our own.  In doing so, Lauren and I can maintain perspective of our own situation in the light that so many others are feeling similar pain and sorrow.  Our greatest desire is to bring a little hope and strength to others as so many have been doing for us. 

Please, please, please.  Let us know what we can pray for...you can be as vague or specific as you would like.  We just want to include you in our prayers.  Congruently, we extend our warmest thanks for the prayers lifted up on behalf of our own family.  We have handshakes and possibly awkwardly long bear hugs for everyone we see that has given us such amazing support. 

With All Our Love,

Brad & Lauren Smalling