THEODORE HAS A MIDDLE NAME

October 10th is a special day.

          It’s the day our ‘strong leader’ was born. This leader goes by the name ‘Richard’; and is otherwise known as ‘Dad’ or ‘Papa’. He is a strong leader because he is a quiet leader.  My Dad knows more than he says, and thinks more than he speaks. He leads with quiet authority because confidence doesn’t need to shout. His gentle approach is endearing and his consistency is greatly admired.  My Dad has silently led me for years; never stepping before me, but always remaining beside me, or behind me. 

          When I was just a child, trying to ride a bike, my Dad came behind me. His broad chest hovered over my toddler shoulders, while holding the handlebars steady to ease my shakiness.  He ‘quietly led’ me down our driveway, as if he was providing stability to a crazy driver veering out of control…

          When I was entering the scary new world of high school, my Dad came beside me. The summer before freshmen year, in order to boost my confidence, he insisted on finding my locker and practicing my combination lock. He ‘quietly led’ me through the school halls while practicing my ‘class schedule’; patting me on the back as if I had already proven my capabilities…

          When I decided to change my last name and marry the man of my dreams, my Dad came beside me.  Before the church doors swung open and “Canon in D” began to play, he wrapped his arm around mine, and firmly gripped my hands to calm any nerves. He ‘quietly led’ me down the aisle, walking slowly, as if he never wanted to let go…

          When I was ready to meet my son for the first time, my Dad came behind me. After my cesarian section, he met me with a wheelchair to relieve some of my physical pain.  My Dad ‘quietly led’ me through the lobby, past the crowded waiting room, and to the entrance of Theodore’s Cardiac Intensive Care Unit; he wheeled with purpose, just as if he was wheeling a mother who had not yet met her son after birth… 

          …And just as my Dad has ‘quietly led’ me throughout my entire life, he continues to do the same today for my children. My Dad is a man of few words, but when he speaks, it comes straight from his heart. My Dad is not always fast to act, but he demonstrates that ‘slow and steady wins the race’.  My Dad is too humble to admit it, but he is ‘a Richard’.  My Dad is a ‘strong leader’, but quite frankly, they don’t come much stronger than his grandson Theodore, who is equally ‘persistent’ when it comes to his slow, but steady fight for life. 

‘The brave’ are always stubborn. 

        _______________________________________

Dad, your one-month old grandson has more strength than most grown men. He is a ‘strong leader’, just like you. Theodore, without even uttering his first word yet, has already ‘quietly led’ many to live life through the lens of gratitude, with a new realization that every day on this earth is truly a ‘gift from God’. 

So, “Happy Birthday”, Dad, from your first Grandson, named in your honor: 

•Theodore ‘RICHARD’ Nelson •

Papas like you are precious and few;

and Theodore will grow up to be a ‘strong leader’, too!

❤

NEW TEDDY BEAR PRAYER:

Please pray with us that Theodore’s lungs will be getting stronger with each passing day. My ‘Teddy Bear’ is holding his own & making fabulous “slow and steady progress”.  His CO2 numbers remain the same, whether he is on the high flow cannula or Bipap facemask, so they’re going to keep him on the cannula for longer trials now, since he makes it clear that he dislikes the big yellow mask very much.  Teddy has been ‘practicing’ on the cannula for hours at a time now, and his stats are remaining solid. PRAISE GOD! 

Occupational therapy visited him this afternoon, and said they are AMAZED at his strong oral skills considering the amount of time Teddy was intubated. He has really strong rooting and his voice is getting stronger each day. Please continue to stand in agreement with us that his right vocal cord has NO PERMANENT DAMAGE in Jesus’ mighty name.  Overall, they are really liking that he’s able to tolerate crying and calming himself down without the need for additional medication/sedatives. 

They are also going to visit my baby tomorrow with a SPEECH therapist in order to see if he can tolerate his pacifier being dipped in milk…  Other specialists from CT Surgery were still talking about it being another MONTH before he could be fed my breast milk through his NJ (nose tube), and we would ask for prayers that the ‘NPO timeline’ for milk feeds would be drastically decreased.  God is ABLE.

Teddy gets a ton of points on the board today!  Teddy-3  ‘HLHS’-0

Thank you all, from the bottom of our hearts, for your continued prayers & support!

🐻

-️ Momma Bear, Praying Isaiah 53:5 

#FallingRightSideUp

I RAISE THE WHITE FLAG 🏳️

I “raised the white flag” somewhere between finding out that my newborn’s open heart surgery was underway the day he was born, and now over a month later- driving 234 hundred miles again, on our fifth road trip to visit him in his CICU room.  I “raised the white flag”, most certainly not claiming ‘defeat’, but choosing to ‘surrender’ a large burden off my shoulders.  I “raised the white flag”, not because I was weak, but because I was strong enough to admit that I can not do this alone.  I “raised the white flag”, not giving up hope for victory, but instead, relinquishing control over what I considered to be “all mine”. The understanding of what it means to “surrender” sheds valuable light on the experience of ‘struggle’, the laws of ‘war’, and most importantly, what we ‘honor’ in our lives.  And above all else, I choose to honor God by surrendering to His will and trusting Him as my defender throughout this challenging battle.  

After learning about Theodore’s diagnosis in my second trimester of pregnancy, it felt as though I was instantly enrolled in boot camp; the most intense program that pushed my every limit; one that certainly did not allow for any ‘water breaks’.  I was training for an upcoming battle I knew nothing about.  Preparing for so many unknowns was next to impossible; making plans was never so critical and useless at the same time.  Nothing but the Word of God could prepare me for the struggle that would be coming my way.  I quickly graduated from boot camp and entered battle, immediately “bracing for impact”.  My mind and my heart were already in conflict, but the major trials did not come until Theodore was born. I did not know what “struggle” was until my newborn was immediately whisked away from my womb for open heart surgery.  I did not know what “struggle” was until I could not console him in my arms. I did not know what “struggle” was until I watched needles puncture his perfect skin countless times a day.  I did not know what “struggle” was until I had to say ‘goodbye for now’, and travel back home, while leaving him hundreds of miles behind with strangers. It was not until my “struggles” became too big to manage on my own, where I recognized the importance of surrendering.  I knew I had to cast all my worries on the Lord, because not even the best medical doctors could sustain me through these kinds of struggles (1 Peter 5:7).  I raise the white flag to ‘surrender’ because when the struggle is “too real”, the only way to triumph is to surrender your battle to the Lord (1 Samuel 17:47). 

I choose to surrender our circumstances to God, fully acknowledging that Theodore actually belongs to Him. Theodore was never mine to begin with; he always has, and always will belong to God first.  “I raise the white flag” to surrender to God because I know that sometimes He says in order to win, you need to “be still” (2 Chronicles 20:17).  I surrender my motherly instincts wanting to “take action” countless times a day while I sit across the room and have to watch nurses and doctors intervene when I can not… Therefore, with full confidence, I can surrender my trust to Theodore’s Creator, because He cares for my son even more than every doctor and nurse; He unfathomably loves Teddy more than I do.  When it feels like we’re unfairly “getting attacked from behind”, I surrender my son’s incurable battle to an ‘all seeing God’ who can do the impossible, and who promises to be our unwavering shield and refuge (Psalm 28:7)  By surrendering to God, I do not retreat, but instead stand strong in His armor, with a whole new perspective on how to “win”.

I’ve learned that sometimes the minute you “surrender”, you end up seeing the “victory” that much sooner.  This trip was surely a “victory”.  The car rides are long when you don’t know what awaits you at the destination.  However, by God’s Grace, upon our arrival we were greeted by our baby boy who had made tremendous progress while we were gone.  And after 5 weeks of (im)patiently waiting, we were able to hold our little ‘Teddy Bear’ for the first time together.  Feeling his little spine press through the hospital blanket on my lap, and his delicate little neck cradled in the crook of my arm, was that much more enjoyable after our long wait; 8 pounds of angelic squishy-ness resting against my chest was heavenly.  The respiratory therapist came into the room and was able to take off Theodore’s BiPAP mask for his 5-minute nebulizer treatment.  Although the therapist remained hovered over my shoulder, while the nurses and doctors peered through the doorway studying my baby’s chest retractions, it felt as though it was just the three of us for that short moment; only Teddy, Daddy, and I in the room.  For the first time, Theodore was able to consciously study our faces as we caressed his cheeks; it was the first time that ‘aggravation’ did not disturb our “little family moment”.  Instead of Theodore being distracted with a tube down his throat and the discomfort of rolled up blankets behind his back, he rested easy in our arms, with his eyes bouncing back and forth between ours; only focused on soaking-up every ounce of love from his parents. It’s all about surrender.  I raise the white flag; I rest in His Peace and understand that if I fight alone, I will lose. 

Sometimes you can choose your battles, but sometimes your battle chooses you.  And sometimes when you surrender, it’s not a sign that you gave up hope for victory, but rather a sign of refocusing and strategizing a better way to attack.  It’s not about our power, but rather our position. This battle against ‘HLHS’ might be bigger than me and every medical center still trying to figure out a better ‘solution’, but it is not bigger than my God, who I am positioning myself behind.  I am a warrior; I fight for my son with fierce aggression and undeniable determination because now instead of fighting ‘for victory’, I fight ‘from victory’ with God as my Commander-In-Chief.

🐻

Love, Momma Bear, Praying Isaiah 53:5 

💙

NEW TEDDY BEAR PRAYER:

Please pray with us that Theodore will be able to start eating much sooner than the doctors are predicting.  There was only a couple of days where he was able to enjoy Mommy’s breast milk through an IV drip feed, and that over two weeks ago… The sooner his ‘NPO orders’ can be removed without the fear of promoting lymphatic drainage in his chest, the better! Right now, our poor babe gets two shots a day in his upper thighs; that medication can also be weaned and changed to an oral medication that can go through his breast milk drip feed once it begins. The next major hurdle Teddy needs to overcome is transitioning from his BiPAP face mask to the CPAP cannula. This requires him to continue ‘slow steady deep breaths’ without becoming too overwhelmed.  We pray his daily chest X-ray continues to improve with less “haziness” every time.  Also, Teddy will not fall behind developmentally in Jesus Name. Our prayer is that he exceeds everyone’s expectations when it comes to his physical therapy as well. We believe his range of motion while turning his neck to the right WILL resolve, and Teddy will begin to kick his legs higher and higher with every passing hour.  Thank you for praying specifically with us, for our Theodore, our ‘perfect gift from God’!