100 DAYS IN PITTSBURGH’S CARDIAC INTENSIVE CARE UNIT‼️
Grateful for how far we’ve come…
Hopeful for how far we’ll go…
-️ Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER :
Sometimes my heart is quiet…and that’s okay. Sometimes the prayers that carry the fewest words are the most powerful. God knows our hearts. ️
I was really looking forward to coming back down to Pittsburgh today because after four days away from my baby boy, I couldn’t wait to get him in my arms again! Well, just like countless times in the past, this journey has a way of deflecting my heart’s desires; it’s a journey that is painstakingly unpredictable and a journey that repeatedly perfects my patience. We’ve been unable to handle Teddy at all based on his agitation, and he had to go back on his full face BiPAP mask for some extra support. Theodore is slightly backsliding in the respiratory department and could use some extra prayers for his lungs, respiration rate, and saturations. In Jesus Name Theodore will be able to advance and remain stable on his high flow nasal cannula. God is able to stabilize my son’s breathing and keep him between a 75-85 saturation range, even through periods of agitation and discomfort. All extra fluid within his chest cavity needs to dissipate ASAP so there is no need for a new pigtail chest drain. AMEN & AMEN!
Who doesn’t love leftovers? Some would even argue that the best part of Thanksgiving is the leftovers… Everyone looks forward to them; they lighten the burden of future meal preparation and can instantly turn lunch hour into “happy hour” at work! Nothing beats the convenience of tossing a previously well-cooked meal into the microwave for a few minutes in order to indulge all over again; pair that with the comfort of eating in cozy pajamas on your own couch, and somehow the food tastes that much more delicious…
Thanksgiving was hard this year. ‘Family’ always tops the list of what we’re most thankful for, yet our family has been physically separated for months now; we so desperately wanted to be a family of four around the same thanksgiving table. I was missing my baby boy so much; my heart was throbbing with pain, like a beating drum that becomes deafening over time. It wasn’t until I made a conscious effort to silence my pounding headache, that I realized that once the twenty-four hour man-made holiday is over, the most important part is the ‘leftovers’ that remain. I woke up the next morning, with not only a fridge full of packaged turkey, corn, and mashed potatoes, but also with a wonderful husband, daughter, and son. Despite whatever trials the current day may bring, my children will forever be my cherished “leftovers” that I carry into each new day . Although they are temporarily “stored” in different locations, I will be joyful in hope, patient in affliction, and faithful in prayer until the day I can enjoy both Theodore and MacKenna simultaneously at home (Romans 12:12).
The luxury of leftovers is the byproduct of someone’s sacrifice. Our thanksgiving feast did not come without hours of labor prior to taking a seat at the table. Just as we’ve been able to enjoy turkey for days thanks to my mother’s sacrifice in the kitchen, we’ve had invaluable time with our son thanks to the medical professionals who sacrifice their holidays while working in his Pittsburgh CICU. As parents, we have sacrificed every little bit of normalcy in order to fight for our son; we’ve altered our entire lifestyle with the hopes of the ultimate ‘leftover results’ being favorable. However, just like the little portions of food that remain scattered on a plate after dinner, there’s little “leftovers” throughout every day of this challenging journey; the ‘small scraps’ of even the toughest days at the hospital actually hold hidden treasures, God-given secret riches that are stored in the darkness (Isaiah 45:3).
Theodore turned 3 months old yesterday and in that short time span I have developed newfound patience while witnessing so many scary obstacles that my little man has courageously and miraculously overcome. I am in awe of how far God has already brought him. If you take a mom, dad, and “big sister”, then add in a critically ill “baby brother”, and finally subtract a familiar home environment… the most important element of life is ‘leftover’: a finite focus on how to give ‘love’ and receive ‘love’ in all of it’s different forms. I’ve learned that giving love does not always mean wrapping your arms around someone with a hug, but it can also look like firm pats on the shoulder after a breathing treatment, adjusting wires and gel pillows to prevent bedsores, or making sure wrist braces are properly secured every hour… I’ve learned that receiving love is not always puckering-up and waiting for a kiss, but it can also look like humbly accepting a donated meal, pondering on kind words of encouragement, or reluctantly allowing a volunteer to snuggle and comfort your new baby while you’re hundreds of miles away at home.
Nevertheless, any sort of “leftovers” cannot be enjoyed unless they are properly preserved. Just as the turkey will spoil if not refrigerated, and the pie will harden if not properly covered- my family, my most valuable “leftovers” at the end of every day, must remain “wrapped” in the promises of God (John 15:7). And even with all the unknowns that are still ahead, right now, in this moment that I own, I will preserve my “leftover memories” of MacKenna and Theodore from the past 3 months, within the highest most guarded “cupboard” of my heart…
-️ Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER :
(1) Mr. Theodore has had quite an eventful week. He was extubated last Monday and endured a couple days of unnecessary aggravation in regards to being properly fitted with a respiratory support head piece. At this point, we are asking everyone to pray that Theodore can quickly progress to and remain stable on the high-flow nasal cannula. Praying that ‘sprints’ for this can start to take place tomorrow !
(2) **URGENT** -Teddy also has what is called a ‘Blake drain’ coming out of the bottom of the incision on his chest; please stand in agreement with us that the drainage from this drain promptly trends down to “zero”, IMMEDIATELY… His output from this Blake drain is still too high; and we are heavily praying against the need for other drains (pigtails) to be inserted into his sides. The plan is to clamp the Blake drain by midnight (tonight!)… and if enough fluid continues to accumulate inside his body, they will NEED to put two NEW pigtail drains in on either side of his rib cage… we REALLLLY don’t want to see him going to the IR tomorrow to get two new holes in his precious little chest! Two new tubes and sutures would be placed by the left and right rib cage; this would require even further sedation, and it’s very painful… –> PRAY that no fluid accumulates in his chest once the Blake drain is clamped tonight and taken out tomorrow morning.
(3) Before we left to head back to Buffalo last Wednesday, we found out from an ordered echo-cardiogram that Theodore has a very large clot at the end of his picc line (by his right atrium). He needs extra prayers for that clot to completely dissolves in Jesus Name. The clot has the potential to dislodge, travel through the heart, and up to his brain, causing yet another stroke. He is on medication that should help this clot dissolve; but I know God is able to work it all our behind the scenes.
(4) Please continue to believe with us that Teddy retains all his cognitive abilities despite excessive medication, sedation and procedures. We pray against any infirmities to all of his five senses. We also ask in Jesus Name that Theodore can finally begin a breast milk drip feed, because for three months he has had nothing but TPN and lipids. (Momma is quite literally running out of freezer space now!)
(5) Lastly, and unfortunately, we also got a call on Thanksgiving that Theodore’s blood cultures came back positive; meaning that he has an infection in his blood. This could have been lethal if not immediately treated. I am THANKING GOD for lining up the perfect attending doctor last week that went the extra mile to check everything possible; because of this wonderful doctor, our son started his antibiotic treatments before becoming septic. I know God has lined-up the best medical professionals to step-in at the most perfect timing; because God is never late, but always on time. Please continue thank God for His grace and mercy in our lives; every ounce of Theodore’s blood will become clean and free of infection because God holds him in the palm of His hand. I will forever proclaim (& I hope you do, too) that it is already finished, and my son will be coming home; whole and new…
Do you know how much I love this precious little child of God? I have been smoochin’ his precious little cheeks through many scary transitions over the past five days. I could not be more proud of my Theodore and how far he has come thanks to his incredibly strong will to fight! He has conquered ‘The Norwood’; one of the most complicated and risky surgeries associated with ‘Hypoplastic Left Heart Syndrome’ (HLHS). From a 6-hour open heart surgery on Wednesday, to a 3-hour cath lab procedure on Thursday, and then finally another 2-hour trip to the operating room on Friday, Teddy defies all the odds and continues to impress everyone in the unit. The one consistent comment that has been made by countless medical professionals is: “look at his size; he has been growing so big!“. I’ve recently learned that I took his ‘growth’ for granted. Many ‘CHD babies’, especially those who have extreme complications such as ‘HLHS’, experience delayed growth after birth. We are blessed beyond belief to continue to watch Theodore grow.
This journey was chosen out of love; and no matter how many twists, turns, peaks, valleys, and roadblocks come about, we will finish this course with love. And just like Theodore- love grows. It’s a type of ‘newfound love’ that has become the harvest of an unique cultivation season; a nine month period of time where ‘growth’ was successful despite many unfavorable conditions. Unlike a diminished crop yield from unforeseen amounts of scorching sun and frost bitten nights, Teddy thrived in the face of his lethal diagnosis. Theodore was the seed implanted in my womb, and just as you sow a little seed into the ground, he grew much bigger with time…. A farmer will not gather his crop until it is perfectly ripe, and the turnover from one season to another needs to take place at just the right time. August 30th came, and my harvest season finally began!
The harvest is the period of time where you ‘reap what you sow’. Contrary to the quick perception of it being the most enjoyable season, I’m quickly leaning that it actually requires the most work. My harvest is beautiful, yet it came with complications that I have to combat on a daily basis. Although I call ‘HLHS’ a problem, God calls it a harvest. You see, if we learn to reap properly, our problems will become a bountiful harvest. Corn is harvested with a big combine machine, yet tomatoes are delicately picked by hand to avoid bruising; the timing and condition for each type of harvest will be very different; some more labor intensive than others. My current harvest season with Theodore is much more demanding than it was with MacKenna, yet both seasons produced equally sweet fruit; beautiful blessings that are mine forever (Psalm 128:2). So despite these unwarranted hardships, I will roll up my sleeves and get to work; I will reap before it rots; I will not let my blessings waste away. In the midst of all the tubes, wires, and stickers attached to my baby, I can either choose to harvest anger, or I can choose to harvest gratitude. I WILL conquer this season by reaping ‘closer relationships’ with family; by reaping ‘unspeakable joy’ through the daily miracles of Teddy beating the odds stacked against him; and by reaping a brand new definition of what love really means…
“Love Never Fails”; it’s the mission of our church; the foundation of our family; a statement that has been ingrained in my heart for as long as I can remember… Theodore’s “half a heart” has made my own heart “whole” in so many ways; my baby boy has transformed who I am. He has given my world more meaning and purpose than ever before, and I will be eternally grateful for the miracle of his life on this earth. We are fighting from a place of LOVE (1 Corinthians 16:14). And love wins; every time. Theodore has taught me that life does not have to be perfect to be beautiful. I’m not waiting for a profound moment to “feel blessed”; to “have joy”; or to “give back”; I’ll be sowing prayers for others, and not just for my son (Luke 6:38) …I refuse to wait when my harvest is sitting right in front of me, ready to be gathered. It’s hard work, but sometimes blessings are heavy to carry. And as the nurses continue to find any excuse to enter Teddy’s room and marvel at his exponential growth, I can only smile and think that the best fertilizer for ‘growth’ is always ‘love’. #LoveGrows #LoveNeverFails
-️ Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER:
I pray that God would continue to shift my heart, to not only focus on my own needs, but to recognize the similar needs that surround us every day, in every single CICU bed at Pittsburgh Children’s Hospital; and to even better realize other people’s needs all around me when I am home in Buffalo, NY. I pray for the ability to thank God through all the hardships; to continually look on the bright side of things and not live in fear of the future.
Please keep our ‘Teddy Bear’ in your prayers as he goes back to the operating room this morning for his chest closure. Jesus, please guide the hands of the surgeons and operating staff once again; please comfort my baby while I am not there. In Jesus Name, Teddy will not feel the pain and confusion associated with removing the paralytic medications and the slow weaning of other pain management. Please pray that Theodore’s lungs continue to heal and become stronger every day, allowing him to come off the ventilator much sooner than anticipated. I believe God is able to not only strengthen my baby’s right ventricle and bring the pressures back down to ‘8’, but God can mend his entire heart and make it whole again. And as always, I pray that Theodore will continue to defy all odds against him because our God has never lost a battle yet… AMEN & AMEN!
Twas’ the night before surgery… when all through Mom’s mind, many thoughts were stirring, none two of a kind…
Sometimes it feels like I am drowning in my own thoughts; so many thoughts, like millions of water droplets compiling together, creating one big raging sea. In the midst of negative speculations and unfavorable odds, I begin to gasp for breath while thrashing against the waves. It’s like constantly treading water, it simply becomes overwhelming and exhausting to filter through all the “what if’s” that tomorrow could hold. It is ONLY when I lift my eyes up and look to the heavens (Isaiah 40:26), that I begin to peacefully float on top of the water; my vast sea of “thoughts” all of a sudden become manageable once I settle down, remain still, and remember that God is in control (Psalm 46:10). It is amazing how we can instantly become buoyant once we point our chin up to the sky; once we handle ourselves correctly, we can go from uncontrolled sinking, to quickly rising above the surface. Just like the water, our thoughts can act as a ‘support’ instead of a ‘hindrance’ if we choose to actively filter out the negativity. This journey has been filled with countless mind-boggling predictions of struggles that our son’s future could hold… but I have to diligently train myself to only focus on the present…
AND – at the present moment, it’s midnight; it’s officially “surgery day” – so I am sitting here staring at my son, memorizing every little feature of my precious baby boy because by tomorrow afternoon, the doctors predict that many of those beautiful details will be altered. Over the past two days they have given us quite a few warnings. They warned us that they would be cutting open the scar on his chest that just took two months to properly heal. They warned us that he would have chest tubes restitched into his belly for drainage purposes. They warned us that due to excessive swelling with surgery that his sternum would remain open for a couple days upon exiting the operating room. They warned us that 2 out of every 10 babies die right on the table… And despite these warnings, at just two months old, my Theodore will be enduring his second open heart surgery.
We have been told countless times that this is an EXTREMELY risky surgery, but at this point, Theodore cannot remain stable much longer without an intervention. We are grateful that his head surgeon, Dr. Morell, feels comfortable to take such a chance with this next step. This surgery is not straightforward whatsoever – it requires multiple steps that encompass a total reconstruction of his heart. The Norwood converts the right ventricle into the main ventricle, pumping blood to both the lungs and the body. After they remove Teddy’s ‘PDA bands’ and his PDA altogether, they will connect the main pulmonary artery and the aorta. The main pulmonary artery is cut off from the two branching pulmonary arteries that direct blood to each side of the lungs. Instead, a connection called a shunt is placed between the pulmonary arteries and the aorta to supply blood to the lungs. Theodore’s entire aortic arch will become wider in order to accommodate better “blood flow”….In Jesus Name, Theodore will “make history” in this hospital and be the first ‘HLHS baby’ with an intact atrial septum to make it through a Norwood open heart surgery.
Whenever my mind says: “let go & give up”, my heart says: “hold on & press forward”… My blood pressure is high. My nerves are high. My emotions are high. My adrenaline is high. My excitement is high. My anticipation is high. My hopes are high… but most of all, MY. FAITH. IS. HIGH. I have Faith that we are right where we’re supposed to be, so in return, my expectations are also high. I am expecting this extremely HIGH RISK surgery to reveal an extremely GREAT REWARD… I am expecting that just when I THINK my thought-life is on track, the God of the impossible will surprise us with the UNTHINKABLE! #GodsGotThis
-️ Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER:
My precious Theodore will be rolled down to the operating room by 8:00AM today, November 13th, 2019. Please pass along our request for prayer to all your family & friends who will pray for our son during this long operation. We greatly appreciate every single prayer sent up to heaven for a miraculous outcome! We were told that the surgery could last up to 6 hours. Thank you for praising God in advance with us for all He has done and is about to do in the operation room. We give thanks to God that he holds our son in the palm of His hand. We give thanks to God that he will be guiding every medical professional that crosses Theodore’s path. We give thanks to God that Teddy will have an overwhelming sense of peace and security while away from his Daddy & I… We give thanks to God for Isaiah 53:5 because God’s Word is TRUE and will never return void. We give thanks to God because He is always GOOD and loves our ‘Teddy Bear’ even more than we do … Theodore Richard Nelson will live and not die; he will declare the works of the Lord.
If I’ve learned anything through this journey, it’s the fragility of life. These pictures are only a week old, yet our current situation depicts nothing close to the care-free playfulness of silly unicorns and an adorable rainbow… But anyone who knows our daughter MacKenna, knows very well that ‘unicorns’ are her current obsession. And anyone who is a parent knows very well the importance of protecting your child by making the best of unfortunate situations. So, that’s what’s we do. Michael and I reluctantly dressed up as unicorns for Halloween to appease our 4-year-old; its such a fun holiday for a little girl to innocently “play make believe”, and for one day of the year, she has the perfect excuse to demand that everyone around her “play along”, too. Accordingly, before taking this picture, MacKenna easily convinced Daddy to chase her in circles around the couch; it was a game she titled: “unicorn tag”. Michael threw his pretend “hoofs” in the air, uttering a loud unicorn “neeigh!”; he began to dart towards the little pink-winged creature that had already pranced to the other side of our family room. I couldn’t contain my belly-laughs as the two unicorns gained speed, making sharp turns around our coffee table. However, they quickly petered-out and it all ended with two white piles of fluff giggling on the floor. While at home, I sometimes get lost in happy moments like this; sometimes even for a good 10-15 minutes, before my heart suddenly drops to my stomach, giving no warning at all; my heart constantly reminds me that a piece of it is missing.
Just as we all dressed up as unicorns to appease our daughter, we constantly ‘mask’ our emotions. In order to keep our jobs, maintain our household, and continue to properly raise our first-born child, Michael and I have been “playing pretend” since June 3rd, and let me tell you… it’s an exhausting game to play. Everything is not always as it seems because behind those two adult unicorn suits are distressed parents, who cringe every time the phone rings. Everything is not always as it seems because under that sparkly pink unicorn horn is a “big sister” who constantly asks when her “baby brother” can come home so she can help feed him. Everything is not always as it seems because that rainbow blanket, tucked under those edible newborn cheeks, covers a long red chest scar from open heart surgery, pink raised neck markings where a blood clot formed from ECMO support, blue bruising due to missed IV attempts, and a PICC line that was freshly stitched into a sweet chubby thigh. Everything is not always as it seems, but putting a fake smile on your face is more conducive to providing a sense of normalcy in a situation that is anything but normal.
Last Thursday, we were a bunch of ‘crazy unicorns’ at home, just “waiting for our rainbow”… and that same day, the phone rang. We found out that “our rainbow”, 237 miles from home, ended up destatting. Theodore’s heart-rate quickly dropped, and he needed an emergency intubation to survive. He went from having a practically empty IV pole next to his crib, to the pole being fully stocked once again with new meds. It’s extremely disheartening to see your child take so many steps backwards in “recovery”. And here we are a week later; also another ‘extubation’ and ‘re-intubation’ later… Theodore’s perfusion is becoming an issue as he continues to grow; his single ventricle heart is having a hard time keeping up with demand. In the doctor’s eyes, Theodore is more or less at a current “stand-still”; they are finding new ‘problems’ almost everyday, including strokes and a more recent blood clot in his left leg. We were informed to take some extra time off of work this upcoming week in order to stay longer in Pittsburgh for ‘Care Conferences’ amongst multiple teams of health care professionals regarding the next step for our son. The brutal truth is we are now at a turning point in this journey where very hard decisions will have to be made… I’m not(!) scared, in Jesus Name… But I am requesting your extra prayers. And yes. I am still begging God for a miracle…
Most of all, every day, between every prayer, I will still hold out, waiting on my rainbow… And the best part is, with Theodore as our rainbow, we don’t have to wait until the storm is over to see his beauty. At just two months old, Theodore continues to teach me so very much. My little rainbow teaches me that we don’t have to wait for the storm to pass; that we need to find joy in-between all the clashes of thunder. And my handsome ‘Teddy Bear’ demonstrates that when lightning seems to viciously strike in the same place twice, you can use its explosive energy to bounce back in order to beat the odds. Theodore is my rainbow from God; my perfect gift; my promise after rain; his face brings me absolute pure joy in the midst of sadness. Even despite my moments of doubt, deep down, I believe with all my heart that the greater this storm is, the brighter my little rainbow will shine; my baby boy will overcome this battle and shine through the darkest clouds, revealing God’s Glory because His name is above ‘HLHS’. A rainbow symbolizes hope for better days because God is always faithful, keeping His covenant of love for a thousand generations (Deuteronomy 7:9) …And when some dark clouds roll in again, if my emotions do get the best of me, I already know how to “play pretend”; I’ll still wipe the tears away and even re-apply the layer of mascara through the rain. I’ll keep my head held high because my help comes from above (Psalm 121:2)… and the truth is, I’ll never see my rainbow if I’m looking down anyway…
-️ Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER:
This is a “all hands on deck” type of week when it comes to praying … today is the first day of A BIG WEEK for our family. Tomorrow, Monday morning will become even more intense. This is a week where many pivotal decisions will be taking place amongst both the medical staff and us, as Teddy’s parents. We need God’s favor on all counts; through every meeting; through every moment in Teddy’s CICU room.
Please pray that even when things are not going as we have hoped for, that we still have faith to cling to God anyway.
Please pray that all the surgeons and CT surgery staff, including Dr. Morell, become aligned on the very best plan for Teddy. A plan that will not cut his years short, but a plan that will bring him home to us in Buffalo. A plan executed out of a special place of compassion for our son and his family.
Please pray that my precious baby boy, Theodore, remains calm, stable, and at PEACE; not experiencing any unnecessary measures of pain. And even if a time comes where ‘pain’ would be inevitable, I pray with all my heart that Jesus holds my baby when I can’t; that Jesus would become a barrier and protect my Teddy Bear from any future discomfort during upcoming procedures.
Please pray that the big blood clot in Teddy’s leg miraculously disintegrates; pray that no other random blood clots continue to form, jeopardizing Teddy’s brain function due to them causing strokes. Hematology will get to the root of the problem and/or figure out the perfect balance of anticoagulants in Jesus Name. Teddy will regain better pulses in his left foot/ankle.
Please pray for Theodore’s right ventricle. It will regain strength. The pressures will begin to improve, coming back to the numbers of ‘7’ or ‘8’.
Please pray for Teddy’s lungs and the fluid they found surrounding the lungs. Pray the fluid diminishes on its own without the need for more chest tubes to be placed.
Please pray that God is simply waiting past our point of ‘expectation’ to reveal His Glory.
Above all else, I’m praying with everything in me that my baby boys heart miraculously becomes WHOLE, that his left ventricle miraculously APPEARS, that this nightmare of ‘HLHS’ would go away forever… that we will have many many years still to come with Teddy on this side of heaven… AMEN, AMEN & AMEN !
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
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! ❤
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
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.
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!
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.
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…
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…
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…
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.
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
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!
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’!