FALLING RIGHT SIDE UP

YOU & ME TOGETHER, WE CAN DO ANYTHING…

Yesterday marked 14 years together; 7 of which we’ve been married! October 28th has always held a special place in my heart because it was the day where it all began. Our wedding anniversary on July 28th would not exist if we didn’t take the chance on each other 14 years ago on October 28th! So in my book, October 28th wins; it’s symbolic of our initial ‘leap of faith’. We were two young kids who barely knew each other, yet took a leap of faith into the ‘unknown’ because we saw the potential for something good.

Can you think back to the first time you held hands with your “other half”? I instantly grin when I reminisce about about the first couple times Michael grabbed my hand. It was a slow process. We’d be at the movie theater and more times than not, I could not even tell you the movie title because I was so enthralled with the movement of Michael’s hand towards mine. I sit here now and laugh at what a big deal “hand-holding” was for us back then… By the time the previews ended, Michael was already more than half way across my arm rest; his shoulder slightly grazing mine. Out of the corner of my eye, I’d watch his hand slowly creep towards my hand, pretending not to notice the little advances he’d make when the movie was full of action. Of course I’d prop my hand in the most optimal “available position”; I’d sit there and patiently wait, craving his hand to move faster… It’s the anticipation that intensifies the enjoyment. The sides of our pinky fingers would actually touch for a few minutes before we both gave in; pretending to readjust in our seats and then casually knock our hands together. At that moment, somehow our fingers would magically intertwine; our hands finally falling still in contentment, but my blood rushing faster than ever through my veins. It’s always a “good sign” if a person touches your hand and it immediately wakes up all the butterflies in your stomach…

Just like the gradual process of “first-time hand-holding”, we are on a slow and steady journey with our son. Of course 14 years ago, I would have never thought we’d now be holding hands in a children’s hospital 4 hours away from home… but just like we did back on October 28th, 2005, we took a leap of faith into the ‘unknown’ with Theodore because we saw the potential for something good. Although holding Michael’s hand back in the movie theater years ago flew me to cloud nine, nothing compares to the comfort from holding his hand through the fight for our son’s life. I am beyond thankful that God has strengthened our grip during this storm. Even through the torrential rain and hurricane winds, our fingers have remained laced together; God being the “double-knot” that keeps us from coming undone. Today, I can still rest easy knowing that Michael will always hold my hand, and that God will always hold our future. He has not failed us yet.

“You and me together, we can do anything” …while hand-in-hand.

-️ Momma Bear, Praying Isaiah 53:5

#FallingRightSideUp

MY TEDDY BEAR PRAYER:

Please continue to pray with us for Theodore’s overall slow and steady progress. He had his oxygen levels slightly increased today due to come chest retractions overnight. His white blood cell count has been trending lower over the past couple days, so we’re believing God to protect him against ALL infections and viruses. Isaiah 54:17 – no weapon formed against Theodore Richard Nelson will prosper in Jesus Name. My “Momma Heart” ultimately prays that Theodore will eventually feel just as comfy, snugly, and safe as he did inside of my stomach in this picture. A newborn’s system already has to make drastic adjustments right after birth so the many added obstacles my ‘Teddy Bear’ has been forced to endure is just unthinkable. I could not be more proud to be his Mother and will pray for his miracle every single day without ceasing. Thank you for joining with me in prayer; praying for a miracle, for my little miracle! ❤

“DON’T GET YOUR HOPES UP”

This statement is dangerous. I’ve been on both ends of it; I’ve personally said: “I’m not getting my hopes up“, and I’ve told others: “don’t get your hopes up!“. But who am I to steal someone’s hope? Better yet, why would I want to rob myself of hope? Hope is the confident expectation of what God has promised me.

When we use the phrase “don’t get your hopes up“, we are promoting the unfortunate, yet popular mindset of‘always needing to get what we want’. We casually state “I’m not getting my hopes up” in order to selfishly protect our emotions. When we announce this disclaimer before we even begin to explain our true desires, we are trying to avoid the ‘hurt’ that comes when things don’t go ‘according to our plan’. “Don’t get your hopes up“, implies the low likelihood of a successful outcome; and this statement immediately lowers our expectations. It’s like holding an umbrella up on a partly cloudy day just because the potential of ‘rain’ is present. Instead of enjoying the moments of pleasurable sun, while accepting some intermittent clouds, it’s easy to allow the uncertainty of some ‘rain clouds’ to diminish hope altogether. We’ve all been guilty of “popping open an umbrella” before a raindrop even falls; expecting a downpour just because the odds are not in our favor; “not getting our hopes up” before the sunshine even has a chance to prevail. Words are powerful, and when we preface our conversations with “don’t get your hopes up“, we are discounting our ability to raise our expectations and pair them with infinite acceptance.

See, the problem does not actually consist of ‘not getting what we want‘, but instead, our unwillingness to accept what we’re dealt with, and work it out for good. This past week, we found out that our baby boy, Theodore, had a stroke. On top of countless other complications arising from Teddy’s open heart surgery and cath lab procedures, we were told a few days ago that he suffered brain damage due to a blood clot that formed. As parents, this is absolutely devastating news. While watching our son get wheeled away for a cat scan, we were hopeful that the scan results would come back clear; “our hopes were UP”. Our emotions took a hard hit when the doctors showed us the image of his brain, with a big dark spot, indicating impairment to his left parietal lobe. The doctors explained that Teddy’s stroke is the reason behind his right arm and right leg not being as active as his left extremities. Although we did not receive the news we wanted to hear, I had to make a conscious effort to accept the outcome, then purposefully raise my hopes again. Not easy. But I now “get my hopes up“, that Theodore will beat the odds once again; that he will fully recover and regain complete function over the right side of his body. I will accept the disappointment for what it is and still work towards the best outcome for Theodore; because it’s how we react that allows us to “fall right side up”.

‘Hope’ sometimes needs to be learned the hard way. Real hope is based on God’s Word, and not my own wishes. Although I wish my son never had to endure such pain, my hope for Theodore’s favorable outcome is based upon God’s Word in Isaiah 53:5. God is up to something in our lives; even when I cannot feel it or see it, I know God is working it all out behind the scenes. I’ve learned that it’s easy to have ‘hope’ when good things happen, but also easy to let go of ‘hope’ when God seems silent. I’ve learned that it’s ok to not always get what you want… but if we continue to hope for what we do not yet have, we will wait for it patiently (Romans 8:25). Patience is the proof of hope; and I am choosing to work on my patience every day. This journey has been incredibly hard, and not at all what we wanted for our family… but when times get tough, we can either panic, or we can pray; we can either say: “don’t get your hopes up“, or “keep your hopes up!”. And in the middle of this storm, I will choose to always pray and never lose hope (Luke 18:1).

-️ Momma Bear, Praying Isaiah 53:5

#FallingRightSideUp

MY ‘TEDDY BEAR’ PRAYER:

Please pray that we continue to place our hope in God. I pray to not just maintain “wishful hope”, by being optimistic with “wishful thinking”… but rather to have “certain hope” – not ‘wishing’, not ‘feeling’, and not ‘expecting’, but KNOWING for certain that our circumstances will work out for the Glory of God.

Please pray that my below “hopes” come to pass in God’s perfect timing:

-I HOPE that Theodore fully recovers from his stroke; that his right side of his entire body matches the great strength of his left side, in Jesus Name.

-I HOPE that Theodore can begin his breast milk drip-feed within the next two weeks; better yet, that he will eventually be feeding right off of his Mother, in Jesus Name.

-I HOPE that Theodore will be approved much earlier than expected for his next major open heart surgery; and that the surgery will be a ‘Comprehensive Glen’ instead of the ‘Norwood’, in Jesus Name.

-I HOPE, above all else, that God intervenes and that Theodore’s heart will be made NEW and WHOLE by the miracle working power of our Almighty God; ‘HLHS’ has no power over my son’s life, and nothing is impossible for my God, in Jesus Name.

TRADING SPACES

…FOR NOW

This is what our “family time” looks like nowadays. We’ve been forced to trade the comforts of our own home for a space that feels cold and unfamiliar.

Instead of the television mounted above our cozy fireplace, it now sits over a red biomedical waste container. Instead of coloring with MacKenna at our kitchen table, we balance books and crayons on the hospital roll-away trays. Instead of sprawling out and snuggling together on our couch, we sit upright and confined in our own separate hospital chairs. Instead of running our toes through the carpet, we keep our feet inside sneakers for hours on end. Instead of just scooping up our ‘Teddy Bear’ whenever we please, we carefully plan out his transfer from the bed to our arms by untangling cords and silencing beeping machines.

Despite these unfortunate “less than ideal” trade-offs, ‘home’ will always be where my family is – and if it wasn’t ALREADY for the Grace of God, we would not even be sitting in this new type of “family room” as a “family of four”. God’s Grace has gotten us ‘here’, but it is our faith-filled mindset that will take us further…. because ‘here’ is simply not enough. ‘Here’, in this Intensive Care Unit, will not cut it for my family. I am ready. I am ready to trade my faith that got my family ‘here’, for the type of faith that will take my family ‘home’.

We’ve traded spaces; but our ‘new space’ here is only a ‘rental’. The truth is, I wanted to pack our bags and leave this ‘rental’ weeks ago, but ultimately our “landlord” gets the ‘final say’. And I refuse to breach a contract with God acting as our “landlord”. In my contract, I’ve committed to placing all my trust in Him for the sake of our son, Theodore. However, unlike most ‘tenants’, I pray and eagerly wait for my “landlord” to evict me. Just like a little girl daydreaming of presents under the Christmas tree, I excitedly fantasize about the day God posts our eviction notice on the ICU room glass door. This ‘eviction notice’ would allow us to go back to the ‘family room’ that we call ‘home’. I was carried here by God’s Grace. I was dropped here at this foreign doorstep. I’ve never done this before. I’ve never exercised my faith like this before; I’ve never had a reason to… but MY REASON; MY SON is much greater than any excuse I could ever make… I just don’t believe that God CAN do more, I believe that He WILL do more. My Faith will continue to interrupt what God is already doing in our lives… I’ll continue to knock on my “landlord’s door”, being so disruptive, making such a ruckus; that there will be no other choice for my family besides: “eviction”. #IBelieve

MY TEDDY BEAR PRAYER:

Theodore has been continuing to spike unexplained temperatures over the past couple days. The doctors are now concerned that it could be meningitis. Please pray with us that Teddy’s fevers come to a quick STOP and no further invasive testing needs to be done in the upcoming days. I thank God for all the resources that have been provided to us in order to sustain our son’s life, but I pray that I continue to put my trust fully in the one & only SOURCE- our Almighty God. As long as we’re in the presence of God, we have Hope. I pray to keep the doctors report behind me – and ‘Isaiah 53:5’ in front of me. I’ve never been here before, never “seen waters so rough” in my life, but I’m ready to fight with faith that I’ve never had before either… Theodore will overcome, and the fevers will be left in the past, not to return again in Jesus’ Name.

Please also continue to pray that Theodore can be slowly weaned off of his sedation medications as well, without the terrible affects of withdrawals. Our baby boy is 7 weeks old now and still has not been fed Momma’s milk. We’re hoping & believing for those breast-milk drip feeds to be turned on much sooner than predicted. The doctors are still estimating a few more weeks for “no food”, which completely breaks my heart. The power of prayer works and God can change this particular timeline, too.

Thank you for taking the time to pray for our son; we love and appreciate you all!

-️ Momma Bear, Praying Isaiah 53:5

#FallingRightSideUp

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’!