Little did I know that this would be your last picture with Theodore. And the more I stare at it, the more I realize how this final moment with your son perfectly summarized your entire relationship. Theodore always felt safe in his daddy’s arms. And you, Michael Nelson, are the pillar of strength for our family…
When I think of strength, I think of you holding MacKenna over Theodore’s incubator for the first time; thoughtfully explaining every beep, wire, and sticker attached to her brother when I couldn’t even mutter a word through my tears. MacKenna felt safe in your arms.
When I think of strength, I think of you bathing Theodore so delicately every morning; paying close attention to every detail and gently exfoliating his lips and skin with soapy soft gauze because it felt better than CHG wipes. Theodore felt safe in your arms.
When I think of strength, I think of you hugging me goodbye; reluctantly leaving your wife and son in Pittsburgh in order to provide for your family by selflessly caring for Covid19 patients during a pandemic. I felt safe in your arms.
When I think of strength, I think of you learning about your son’s death as you drove alone in the car down the thruway; finally arriving hours later to just hold me while embracing Theodore’s lifeless body. We felt safe in your arms.
You were with Theodore in his very first moments on earth when I couldn’t be there, and I was with Theodore during his very last moments on earth when you couldn’t be there. I knew parenthood involved ‘teamwork’, but never to that extent… Yet, I’m grateful that the unthinkable tragedy our family endured has never torn us from each other’s arms. In fact, MK and I still debate who can snuggle under your armpits first. And although we’d both forfeit our spots in a heartbeat to see Theodore on your lap again, I’m confident that he has the very best babysitter in heaven. Theodore is safe in his ‘Father’s Arms’. However, your boy is just patiently waiting for that one sweet day, where Jesus can pass him back to you; back into his strong daddy’s arms.
Happy Father’s Day- your strength IS the definition of ‘Fatherhood’. We all love you.
-❤️ Alexandria, praying Psalm 46:5 … join me by #FallingRightSideUp 👆🏼 when life gets turned upside down👇🏼
️Here is my favorite ‘brunette Elsa’, who happens to be much better at ‘melting hearts’ than freezing them…
HAPPY 5TH BIRTHDAY, MacKenna!
Mom & Dad could not be more proud to call you our daughter. You became a big sister, and lost your baby brother all in the same year. Your delicate little heart has endured more than we ever hoped it would at age five. Although you like to remind us that you are ‘Queen Elsa’, the truth is, your kind heart is anything but ‘Frozen’. In fact, the events within this past year have only fertilized your heart, and now I sit in awe of the colorful garden you unknowingly possess. Your beautiful heart has learned to seamlessly transition from pure excitement, to true compassion… and then from raw sadness, to hesitant acceptance. You now talk to heaven with greater understanding and more purpose than ever before …
Today, when I watch you blow out the candles on yet another year, I’ll thank God for your 5-year-old-tenderly-warm-more-matured heart. Oh yes, and I’ll secretly wish to be granted some of those special “Elsa powers” to do the impossible and “freeze you at five”. #Freeze
We love you so incredibly much MK, and so does baby brother, ‘Fee-A-Dore’ (more commonly known at home as our ‘Teddy Bird’, the cardinal, nowadays! Psst… can you find him!?)
All 1,248 ounces were fortified with an extremely large dose of love…
When you fortify, you add an element of ‘value’ to something that could benefit from being strengthened. And there’s no doubt that Theodore Nelson was born a ‘fortifier’; his tenacity could invigorate anyone and enhance their lives for the better. He was a gift that allowed me to pump with purpose. I was determined to demonstrate love in the only capacity I knew how; I yearned to be ‘useful’ as his mother, even when I helplessly sat in the corner of his ICU room. After every open heart surgery, it would be weeks on end that I would be forbidden to hold my baby due to his risky recoveries. So instead of holding Theodore to show my love, I was holding my pump. I was determined to preserve every missed opportunity of ‘normal motherly love’ by “pouring” my heart and soul into those bottles.
This beautiful recognition from Catholic Health yesterday couldn’t have been published on better day. You see, exactly one year ago, on June 3rd, 2019, I fully realized my ‘fortifier’ as ‘prayer’. On that day, my son’s diagnosis of ‘HLHS’ instantly sucked the life right out of me; I could barely stand up on my own two feet. It wasn’t until I started to fortify myself with the Word of God that I felt empowered once again.
Everyone’s kindness was so overwhelming last night, but I promise you, I am not even HALF as ‘amazing’ as my fierce Theodore. He single-handedly transformed what I knew as ‘love’ into something much deeper… Pumping milk was simply a privelage for me; an outlet which I’m forever grateful allowed me to “love” my baby from a distance. Please know that I pass along everyone’s gratitude directly to my son; all praise belongs to him. It is Theodore that has taught me true perseverance and it was his unique life with half a heart that will forever be my reason to “fortify with love”. Because of his ‘bad’ diagnosis, I will forever choose to do ‘good’ in his name. (Genesis 50:20).
There’s no doubt this world could benefit from some fortification. And even in the midst of a pandemic, vitamin C is secondary to the extra does of ‘love’ that everyone currently needs. It is the most priceless supplement that mixes well with everything; and better yet, it’s free… In a world that will constantly try to dilute you, find your reason to remain fortified.
(A special thank you to my husband, Michael Nelson, who helped me document and deliver every single ounce of milk… & to Gina Penque from the Women’s Center at Mount Saint Mary’s Hospital in Lewiston, who made the emotional process of donation a beautiful experience for us!
MK insisted on taking her little brother for a drive today. Never in my wildest dreams did I think ‘playtime’ would look like this… but ‘this’ is our reality. And that’s the thing about ‘reality’ – you can’t hide from it. You can either run from reality, or choose to accept it. Although, trying to escape reality is like running from your own shadow. It’s utterly exhausting. You may as well stop, turn around, admire what reality looks like, lather on some SPF, and embrace it!
I could (easily) cry about Theodore not physically sitting in that passenger seat (believe me)… or I could smile at the fact that my daughter had a 7-month opportunity to genuinely know and LOVE her little brother; a love so great that he doesn’t even need to “call shotgun”. 🧸
(By the way- I’m slightly obsessed with silhouettes lately, so stay tuned!)
It has been one month since I’ve held my beautiful baby boy… and within those painful 30 days, besides feeling every single emotion known to man, coupled with periods of complete numbness, I’ve realized this: it’s not about “learning to get over it”, it’s about “learning to live through it”… and for me, that includes honoring Theodore’s memory in a BIG way for the rest of my life…
On the 9th day of every single month, we will celebrate Teddy’s homegoing to heaven. We will do this by giving to those who are “falling right side up”; those that have had their lives turned upside down, yet decide to “fall up” by demonstrating the same ‘strong and courageous’ qualities of our Theodore. It is an honor to give-back in his name! The first leg of our new journey will commence with a long season of paying tribute to my fellow heart-moms across America.
Hi, Heart Mamas! I see you. The first round of our ‘Teddy Bear Care’ is officially in the mail to someone special!
We laid our cherished Theodore Richard Nelson to rest on Tuesday, April 14th, 2020.
This global pandemic has got nothin’ on the ‘Teddy Bear Warrior’ community! I’m still speechless from this complete SURPRISE… & I’m still having a very hard time formulating sentences to express what is in my heart; my heart is simply in overload…
My heart misses Theodore like crazy. My heart loves you all like crazy.
So, in the meantime, I made this slideshow from the footage that was so graciously captured on the day we laid our baby boy to rest. Our 5-mile journey from the church to the cemetery was not completed alone, but instead, lined with tearful family and friends, holding homemade signs and yellow ribbons of hope in honor of our sweet ‘Teddy Bear’. Thank you so very much to every single person who supported us in any capacity over the past seven months. Love truly never fails.
My beautiful Theodore; my precious Teddy Bear, my strong and courageous Warrior, my brave and fierce Baby Boy –
Momma will always love you with every fiber of my being and every ounce of my soul.
If love could have kept you here, it would have kept you here one thousand years… but I’ll give thanks to God because my love for you is eternal…
My own heart will be forever broken on earth, as a piece of it now resides in heaven… but I’ll give thanks to God because my broken heart results in yours being made whole…
And until that one sweet day, when I can embrace you in my arms and caress your angelic face again, I will sing out loud every night before bed; I will sing, looking straight up to the heavens, your original melody that came straight from my heart; a declaration that can NEVER be silenced …
“Theodore, Momma adores you… Theodore, I love and adore you… Theodore, God’s perfect gift for us… Theodore, strong and courageous.”
Today we switch lanes on the hi-way. We’re entering a whole new phase of this journey with Theodore; I just pray that we’re veering into the ‘express lane’ with a straight shot home from here… Although, the next leg of this trip hasn’t yet begun, this Momma is already feeling a little “car sick”. Traveling alongside a cherished ‘passenger’ with CHD never gets easier as the trip carries on; there’s far too many detours and construction zones. It sometimes feels like you’re trapped, driving circles in a roundabout with no way to escape, because there’s simply no cure for this terrible disease. In just a few hours we place Theodore’s life in another man’s hands, and the reconstruction of his tiny little heart will continue… it’s so very hard to believe that the surgeons will be cutting my baby’s chest open for the third time; taking a scalpel to the scar that just took four months to heal.
The hard reality is that by this afternoon, our Teddy Bear will look nothing like he does in this picture. I first looked at this image that Michael snapped and called it ‘perfect’. Besides Teddy’s perfect blonde fuzz glowing in the sunlight, and his perfectly plumped cheeks all rosy from my kisses, this picture had captured what was a perfect weekend…
He smiled. We played. He gazed. We snuggled.
It all went by way too fast…
time. is. fleeting.
And sometimes that’s okay… because if the ‘perfect moments’ don’t last forever, the ‘hard moments’ won’t last forever either…
Lord, I will forever proclaim that You are able to do the impossible! I pray that Theodore will miraculously be headed HOME in record timing after his Glenn Surgery today…
1️⃣ I pray in Jesus Name that all of the amazingly talented surgeons, doctors, nurses, anesthesiologists and medical support staff are healthy and aligned while working on Theodore today; that my baby boy will surpass all of their expectations.
2️⃣ I pray in Jesus Name that Theodore’s lungs will remain clear, dry, and expanded; that he will be extubated right away after surgery.
3️⃣ I pray in Jesus Name that they will be able to close Theodore’s chest immediately in the operating room today; that the surgeons can properly bring together both sides of Teddy’s sternum, leaving no protrusions for infection.
4️⃣ I pray in Jesus Name that Teddy will not experience what they call ‘Glenn Head’. I pray that my baby will remain comfortable throughout recovery and with the help of proper medications, not experience the terrible predicted headaches.
5️⃣ I pray in Jesus Name that Theodore will remain and PEACE. Please be with my baby when I cannot; Jesus please keep my Teddy comfortable and not scared.
God, WE THANK YOU for placing us in the best hands; for giving us the best team of medical professionals to care for our son. We trust You and believe that You will fully restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17). Thank you for the miracle of our Theodore Nelson. … AMEN & AMEN !
❣️❣️ THANK YOU FOR SHARING AND PRAYING FOR THIS LITTLE BOY WHO MEANS EVERYTHING TO US… SURGERY SHOULD BEGIN AROUND 8:30AM (ET), BUT I WILL KEEP EVERYONE POSTED ON MY SOCIAL MEDIA ACCOUNTS ❣️❣️
Our ‘Mr. Theodorable’ turned 200 days old this past Tuesday and still continues to fight hard for life with every determined breath he takes!
(…not to mention, he makes me smile about 200 times per day, too! )
I have learned a lot in 200 days…
I have learned that one person’s ‘inconvenience’ can be another person’s ‘luxury’… being quarantined at home with our two children for weeks on end would be Michael & I’s dream come true right now.
I have learned that as you go through deep waters, you are washed of old desires and suddenly yearn for what you used to wish-away… my past complaints are the same exact things that I now crave most.
And I have learned that gratitude is a choice; gratitude is built upon a foundation of ‘perspective’, and perspective constantly changes… what I choose to give thanks for today is far different from what I gave thanks for last year, last month, or even yesterday.
And today, after removing some blinders, my current point of view results in gratefulness for Teddy’s 3rd major open heart surgery this coming Tuesday; I am grateful that he is still here, fighting for this precious thing called ‘life’.
” ‘Cause don’t you know there’s part of me that lovvvess to gooo…
into the UNKNOWNNN! “
I’ve obviously been exposed to Elsa songs way too much lately; thanks MacKenna!
🤣 …But in all seriousness, the declared national emergency has brought about a whole new extra set of ‘unknowns’ into our little world of trying to balance an acceptable lifestyle across state lines. We’re keeping ALL the medically fragile children and their parents in our prayers, as the results of this terrible uproar are that much greater for us on every. single. level. May you all find some peace in the chaos…
Today we were just informed that our four caregivers for Theodore had to be dwindled down to two main people. As much as Michael and I would love to quarantine ourselves inside Theodore’s ICU room together until this viral outbreak is over, that is simply not possible. We have a home, we have jobs, we have bills, and most importantly, above all else, we have a DAUGHTER …all 235 miles away from our precious son. Thus far, we’ve managed to keep our heads above water because of Teddy’s Nanni & Grandma; the two additional (& absolutely incredible) caregivers for our son @UPMC Children’s Hospital. The coronavirus pandemic has produced new hospital policies that have completely rocked our boat. When the waters just began to calm, this viral storm came along, tossing us overboard and into the waves. We have most definitely braved other severe storms within this nearly 7 month-long expedition, but we had life jackets. Banning two of Teddy’s current four caregivers from the hospital is like someone taking a needle to our life jackets, releasing all the air supporting our weight; forcing us to tread water on our own now. So what’s the new plan to stay afloat? 🤷🏼♀️ It’s currently unknown. I’ll continue to belt out alongside my daughter:
”I will follow You into the UNKNOWNNN!”
-because the God I follow is the One that has called me into the unknown; He has called me out upon the waters. I will not be afraid because when I feel weak, He is strong (2 Corinthians 12:10); I cannot drown because I have an overqualified lifeguard that can walk on water (Matthew 14:25). We WILL come through this storm and get to the other side, even if it means I doggy paddle with Theodore on my back all the way to the finish-line on shore. In oceans deep, my faith will stand by forever focusing on God’s blessings that still surround us; the little rays of sunshine that always poke through the storm clouds.
The current sunbeam I’m determined to bask in right now is this: amongst all the media hype centered around coronavirus, we’re absolutely shocked to see that PEOPLE, along with a variety of local and national news stations, are continuing to share our little miracle’s first smile… With now millions of viewers combined, we want to say thank you again for all of your prayers and well wishes
It is so much more than ‘just a smile’. In the CHD community, it’s awareness for a deadly disease with no proven causes or cures. In the CHD community, it’s choosing joy in the face of trials. In the CHD community, it’s enjoying some ripened fruits of faith. In the CHD community, it’s rejoicing in hope for the future. In the CHD community, it’s letting love win, knowing that love never surrenders (1 Corinthians 13:8) in the CHD community, it’s highlighting the ‘good’ in a situation that is filled with ‘bad’. We are grateful for smiles.
… because nowadays, amidst all the unknowns, smiles are contagious, too.
Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER-
Lord, I will forever proclaim that You are able to do the impossible! I pray that Theodore will miraculously be headed HOME for the first time, well before the doctors currently anticipate!
1️⃣ I pray in Jesus Name that all of the amazingly talented surgeons, doctors, nurses, and medical support staff at UPMC remain healthy through this coronavirus pandemic… that no sickness will come near those working tireless to help our sweet Teddy Bear. God, your hedge of protection is around all healthcare workers, including Teddy’s own father, Michael, who selflessly works on the front line in Buffalo General Hospital’s ICU in-between caring for his son.
2️⃣ I pray in Jesus Name that Theodore’s lungs will remain expanded; that pulmonary edema will no longer be an issue. I pray in faith that Theodore will continue to hold his own off the nasal cannula, and that he can begin to wean off diuretics, all while his chest x-rays show improvement.
3️⃣ I pray in Jesus Name that some way, some how, the hospital is able to allow one extra caregiver to periodically return to Teddy’s ICU room; allowing us as to return to our daughter in Buffalo and not be away from her for weeks on end…
4️⃣ I pray in Jesus Name that Teddy’s swallowing skills will continue to develop, that he will pass his swallowing evaluation with breast milk, and be able to take FOOD BY MOUTH after his third open heart surgery. I pray that Theodore’s stomach will tolerate the volume of his feeds, and that a gastrostomy tube (G-tube) will NOT be needed. In faith I believe that all oral aversions/gagging will completely stop.
5️⃣ I pray in Jesus Name that Theodore will do exceptionally well in his upcoming 3rd Open Heart surgery this month. That all will be precisely executed in Your perfect timing. We pray that the recovery post surgery is 10x easier in every single aspect, compared to the other two open hearts surgeries you’ve carried Teddy through already.
God, WE THANK YOU for placing us in the best hands; for giving us the best team of medical professionals to care for our son. By Your Grace, we’ve gotten to enjoy Teddy’s smiles for 40 days now. We believe that You will fully restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17), and that you continue to bless him with pleasant days ahead. Thank you for the miracle of our Theodore Nelson. … AMEN & AMEN !
Our ‘Mr. Theodorable’ is 6 months old and able to turn anything from ordinary to extraordinary‼️ … Working towards traditional developmental milestones with ‘half a heart’ is like climbing Mount Everest against every unfavorable condition that exists. When Theodore first smiled before his six month birthday, we reached the highest peak and claimed victory! I jumped for joy, I cheered out loud, I cried happy tears, and gave a whole lot of thanks to God… all while proudly standing next to our baby on that mountaintop!
Who doesn’t love a good drama? …Perhaps one with a juicy plot twist filled with new characters and unexpected events? …But what happens when the screen goes black and the white block lettering emerges: “to be continued…”? And better yet, how do you feel when it’s YOU staring as the main conflicted character?
I was pouting. Like a 3 year old who got denied dessert before dinner, I threw a tantrum and placed myself in timeout. Wednesdays are plain hard; Wednesdays are always filled with tears. However, this Wednesday and last Wednesday were hard for different reasons. Today I had to kiss my baby goodbye and say “see you next week” for the 23rd time. You’d think I’d be better about containing my tears at this point, but as I tiptoe backwards out of Teddy’s room, my heart starts to beat a little faster and inadvertently turns on a faucet; all I can do is quickly dry the stream of tears flooding my cheeks as I dart towards the elevator, because God knows if I walk too slow, I may change my mind and turn back… However, last Wednesday was different; I opted to stay in Pittsburgh because I desperately wanted more time with my precious boy… I was alone with Theodore for four days while Michael went back to Buffalo for work, and unfortunately during that timeframe I had to process news from the surgical team that was “hard to swallow”. Sometimes the worst place you can be is in your own head. After a few days of isolating myself while dwelling on all sorts of feelings, I was finally ready to emerge from my little “timeout corner” in Teddy’s ICU room… So here comes the commonly practiced and anticipated part following a “timeout”; the part where I talk-it-out and come to terms with what happened, and more importantly a better understanding of my valid emotions…
Theodore had his big cath lab procedure last Tuesday, February 18th. Although the new numbers delivered were more ‘favorable’, they did not meet the exact criteria to immediately move forward with the next surgery (The Glenn). We eagerly awaited the many teams of doctors to weigh-in and come up with a conclusion. Wednesday the 19th arrived, Michael left to go back to Buffalo, and I had some sense of relief by not having to leave Teddy; I was gearing up for a great “mommy & son day”! However, shortly after, the surgeons came to inform me that as a result of further discussion at their conference, they would like to wait an additional 4-6 weeks to see how Theodore develops before proceeding forward with the next step. I somehow managed to plaster a fake grin on my face and utter a polite “okay” with a quivering voice, all while physically biting down on my bottom lip in order to refrain from crying right then and there… Thinking to myself: “No, Alex, not this Wednesday; for once there’s NOT supposed to be tears on THIS Wednesday!” …But it was too late. The group of surgeons exited Teddy’s room, and I stumbled behind Teddy’s bathroom door, abruptly exhaling from that unexpected punch to the gut. It was like a trial by jury, where I felt like we were sentenced to 4-6 more weeks in “jail”. Pittsburgh is far from home; we’re isolated from friends and family and all sense of normalcy. I respect the surgeons, as they most definitely had reasonable cause to recommend a longer wait-time before Theodore’s next surgery. However, that additional ‘4-6 week wait’ recommendation is initially interpreted from a mom’s point of view as:
“that’s another 32-48 more hours of driving in the car”…
“that’s an extra 16-24 days of not being able to see my daughter”…
“that’s 4-6 more times that I have to say goodbye to my baby”…
Nevertheless, all of these unfavorable perceptions of “what waiting means to me” pales in comparison to the main objective: the need to open up my baby’s chest yet again for surgery…
So here I am, stuck at “to be continued…”. I’ve quickly come to realize that I may be the main character, but it’s not MY story … It’s His Story. It’s not an autobiography, as it is God who holds the pen. I do not know how the story ends, but I do know that God is the author and finisher of my faith (Hebrews 12:2), and will eventually conclude each chapter in a way which brings Him glory. Although I pray that this current chapter at Pittsburgh Children’s Hospital comes to an end sooner than we think, I am choosing to believe that every twist and turn God writes into His story is for the best. By God’s grace, I am learning that when the plot thickens and the circumstances don’t make sense, it’s not our job to worry about what comes next; the Author is in control of His story line and the premise is always to prosper and give hope to us as the main character (Jeremiah 29:11). Therefore, as His Story continues, it is my honor to remain casted as His main character. Luckily, God has many stories; matter of fact, He has a story for each of us, which allows everyone an opportunity to be the “star of the show”! Even though at times my impatience has tried to steal the pen right out of God’s hand, He has remained faithful (Deuteronomy 7:9). It has been inside the chapters of waiting that my love for God has deepened. It has been inside the chapters of turmoil that my reliance on God has strengthened. His Story is my well-written biography, where the dreaded segments of “to be continued…” are strategically placed inside certain chapters with the sole purpose of reinforcing complete trust in my God; my Author.
Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER
Lord, I pray that Theodore will miraculously come through and recover from this next open heart surgery in record time …
1️⃣ I pray in Jesus Name that Theodore will not create new collaterals, causing more increased blood flow to his lungs. I pray for his heart and lung pressures to further decrease between now and mid-March, allowing The Glenn surgery to be a complete success.
2️⃣ I pray in Jesus Name that Theodore’s lungs will remain expanded; that pulmonary edema will no longer be an issue. I pray that as Theodore begins to wean off diuretics, that his chest x-rays still continues to show improvement.
3️⃣ I pray in Jesus Name that Theodore has no more fevers and that no new infections will come near his body which would deter his upcoming open heart surgery. I pray that no weapon formed against Theodore will prosper in any way shape or form.
4️⃣ I pray in Jesus Name that Teddy’s swallowing skills will be quickly developed and Teddy will show no signs of future aspirations. That he will pass his swallowing evaluation with breastmilk this week and begin taking FOOD BY MOUTH. I pray that a gastrostomy tube (G-tube) will NOT be needed and for all oral aversions/gagging to completely stop.
5️⃣ I pray in Jesus Name that Theodore will not only tolerate but do exceedingly well with his NJ being converted to an NG for breastmilk drip feeds this coming weekend. By your grace, Teddy will continue to tolerate his full feeds, and his stomach will properly expand to contain the entire volume. I pray that Teddy will not regurgitate any of his feeds, and only enjoy the effects of having a full-belly for the first time ever.
God, WE THANK YOU that Theodore has had a wonderful 5 days in a row. By your grace we have seen him smile and his eyes better fixate on ours. We believe that You will fully restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17), and that you continue to bless him with pleasant days ahead. I pray that Theodore will fully enjoy his sister’s company again during this upcoming weekend. Thank you for the miracle of our Theodore Nelson. … AMEN & AMEN !
HAPPY FIVE MONTHS, my sweet Teddy Bear. You have overcome more in five months than most people do in a lifetime. When I look at you, I see the ‘fierce’ in your twinkling eyes… I see the ‘determination’ in your pursed lips. I see the ‘courage’ in your healing scars. But most of all, I see love.
Your Nanni said it best today:
“Love has an origin. God remains that origin. And for Theodore, both life and love coexist today … and for that I am grateful.”
Momma Bear, Praying Isaiah 53:5
Well, our baby boy is surely due for some good news soon… Theodore has endured setback after setback. For those that may have missed my previous update, the cath lab doc did not deliver the news we were hoping for last week. However, the coils that were placed in his mammary arteries are currently doing their job by preventing additional blood flow to his lungs. Since the 21st, we are thrilled to see some improvements in Teddy’s daily chest X-rays.
From a surgical standpoint, we’ve been told that his right ventricle pressures are still elevated around 17 (need to be under ‘10’) and his pulmonary pressures are in the 20s (should be around ‘12’). It was a letdown to hear that his pressures are currently too high for the next surgery (The Glenn). While we wait for Theodore to go back to the cath lab for retesting sometime in mid-February, in order to cover all bases, preliminary evaluations with the heart transplant team have already began. It’s easy to become overwhelmed, as learning about the heart transplant process is very daunting; I can most definitely understand why many families opt out.
Finally, throughout these past couple days, right when Theodore’s gallbladder began to improve and his belly became less distended, he then started to have constant fevers and emesis. Come to find out, he contracted an infection within his chest wound. Teddy had to go back to the operating room yet again yesterday… he’s my little champion!
The surgeons performed a wash-out and it of course required some extra meds for him to be “somewhat comfortable”. He now has another wound vac over his chest scar to help with drainage. Teddy’s tests came back indicating a staff infection. This could have been fatal if not addressed with antibiotics. We thank God that the infection is localized and not in his blood. Thankfully, Theodore had a well-earned “peaceful” day today…
~TEDDY BEAR PRAYER~
Lord, I pray that Theodore will be able to start to enjoy some of life’s simple pleasures; that he will now have a stretch of time without more unforeseen traumatic hurdles…
1) I pray in Jesus Name that Theodore will not create new collaterals, causing more increased blood flow to his lungs. I pray for the 2:1 pulmonary to systemic flow ratio in his body to be maintained and that no new collaterals begin to form…
2) I pray in Jesus Name that Theodore’s lungs will remain expanded; and especially the right lung will no longer be deemed “collapsed”. His breaths will remain slow and deep despite any hardships ahead.
3) I pray in Jesus Name that Theodore has no more fevers and that his infection clears up without any further concerns. I pray that my baby boy will rest and not feel the extra discomfort from the wound vac on his chest.
4) I pray in Jesus Name that Teddy’s swallowing skills will be quickly developed and Teddy will show no signs of future aspirations. That he will begin to enjoy taking a binki and that a gastrostomy tube (G-tube) will NOT be needed.
5) I pray in Jesus Name that Theodore’s eye nystagmus will continue to improve until it is completely GONE… We thank You that his MRI results were clear showing no new strokes! I pray that Teddy’s motor skills continue to catch-up to where they should be for his age.
God, not only do we pray that You will restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17), but that you bless him with pleasant days ahead. I pray that Theodore will fully enjoy his sister’s company during her upcoming visit. Their time together as brother and sister is very rare; therefore, I pray it will be extraordinarily beautiful…
Is anyone guilty of being a “backseat driver”? Michael and I are about to depart on trip number 18 down to Pittsburgh; if you are counting “there and back”, that’s actually 36 different 4-hour windows of time where I’ve had the opportunity to be ‘that someone’ who provides unwanted driving advice…
We’ve all commented at some point: “Ahhhh!” -if the driver isn’t pressing the brake quick enough… “It’s a green light!” -if the driver isn’t accelerating the moment the red light disappears… or, “Maybe you should make a left here?” -if the driver isn’t choosing the shortest route… I’m guilty; I’m a “backseat driver” that even likes to tinker with the temperature dial and browse through the radio channels when (I think) the Hubby isn’t looking…
God Bless you, Michael!
One of the toughest parts of this painful journey is the lack of control. The loss of control over many areas of Theodore’s life is absolutely tormenting. Most of the time it feels like we’re playing a barbarous game inside of a real-life horror story: “cut your son’s chest open, then sew it back up… and… cut your son’s chest open, then sew it back up… to only… cut your son’s chest back open all over again!”. It’s a mother’s instinct to control everything they possibly can within their child’s life in order to promote the most favorable environment for growth and development. Therefore, allowing machines and strangers to completely take over what I am naturally wired to do is not only painful, but it’s simply not normal. It’s like constantly walking against a heavy current; life in the pediatric CICU is utterly exhausting because it opposes every single sense of control; each day I push forward simply trying to avoid being swept away by an undertow.
Naturally speaking, Theodore has backslidden quite a bit this past week. His ‘lung disease’ is considered to be just as monumental of a problem as his “half a heart”. Both the CAT scan and echocardiogram that Theodore had done on Wednesday revealed numerous issues such as his liver being enlarged, his gallbladder being filled with sludge, his right lung being slightly collapsed, and diminished squeezing from his right ventricle. Due to these newfound ‘problems’, Teddy is back on the full-face CPAP mask, and his breast milk feed has been turned back off (again)… In this setback, I’m reminded that “I am the Passenger”…
Just like I trust Michael to safely transport us during the road trips between Pittsburgh and Buffalo, when I am anxious and afraid on this journey, I need to put my full trust in God (Psalm 56:3). Michael may be the operator of our physical car, but it is God who is the ‘driver’ of this entire journey. How blessed are we that unlike Uber, God does not even charge us to sit in His passenger seat; we don’t need to use an app on our phone to show Him our location for pick-up. To hitch a ride, I can simply call upon God’s name; He is always with me and I cannot be shaken if He is right beside me in the driver’s seat (Psalm 16:8). Theodore has given me such a precious gift; he has given me an opportunity to trust in God like I never have before… It’s easy to hop in the car for a road trip when you know the destination and how long it takes to arrive. However, Theodore has helped me realize that I will never have an exact location to plug into the GPS; he has shown me the importance of truly “letting go” and “letting God”… so much, that I can turn on the heated seat and cozy-up for a nap while God maintains a steady wheel. And even when my own heart rate spikes, where I become dizzy with anxiety from watching Theodore desaturate on the hospital monitor, I am abruptly reminded that I am not the driver; that I’m only “along for the ride”. I’ve realized the most beautiful part is that no matter where the rugged road leads, God is not a taxi driver that drops you off and leaves you stranded; He never leaves you alone at the destination; He remains; He stays closer than a brother; He never forsakes you (Hebrews 13:5).
And whether God is driving me through a scenic landscape or a torrential rainstorm where I can hardly see past the whipping windshield wipers, He is still my God; my Driver, who no matter what the conditions may be, takes one hand off the wheel, reaches over the armrest, and takes hold of my hand. His promise of “do not fear, I will help you” (Isaiah 41:13) is like stumbling across your favorite song while scanning the radio channels. So even on the hardest days, where all sense of ‘control’ is gone, I will jump in God’s passenger seat; I will trust my Driver; I will buckle up and enjoy the ride.
Momma Bear, Praying Isaiah 53:5
MY TEDDY BEAR PRAYER
Lord, I pray that Theodore only continues to progress instead of regress. I pray that he continues to shock all the doctors by overcoming these next major hurdles in his path:
1) I pray that In Jesus Name Theodore will do amazing during his big CATH LAB procedure coming up this Tuesday, January 21st. I pray that Teddy’s right ventricle pressures will drastically improve; that next time they are checked, the Doctors will find the pressure to be under 10 mmHg. His right ventricle is NOT getting tired and only getting stronger every single day. I pray that God’s will be done when it comes to the next heart surgery (The Glenn) or the heart transplant team getting involved, because I believe that Teddy’s heart is being made new with every beat.
2) I pray in Jesus Name that Theodore will NOT need a tracheostomy; that his lung disease will be completely healed and he will maintain slow, steady, and deep breathing. Theodore’s lungs will expand; and especially the right lung will no longer be deemed “collapsed”. You are able, Jesus…
3) I pray in Jesus Name that Theodore is able to effectively wean off of sedation medication, milrinone, and EPI… You will fill that gap, Lord; You can comfort Theodore and be his bridge to sustaining life without extensive medication.
4) I pray in Jesus Name that Theodore will be able to eventually EAT BY MOUTH. His swallowing skills will be quickly developed and Teddy will show no signs of aspiration. A gastrostomy tube (G-tube) will not be needed and Teddy will enjoy Mommy’s milk with a bottle; and eventually FOOD at the table at home with his sister!
5) I pray in Jesus Name that Theodore will maintain all his cognitive abilities. His eye nystagmus will continue to improve until it is completely GONE! His MRI next week will show that his brain is free and clear of any new strokes. No clots will be formed from his next cath lab procedure on Tuesday the 21st; NO weapon formed against Theodore Nelson will prosper.
My baby will LIVE and not die; Theodore will declare the works or the Lord. I will forever proclaim that it is already finished; God, You will restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17). Miracles are easy for my son’s creator and I know that you, God, are able to bring Theodore home with his own whole heart in Jesus Name.
This holiday season has been exceptionally hard. The normal stress that is induced by trying to purchase perfect gifts for practically every person you know, chasing down local Santas for one quick picture, and decorating the house just enough to foster a ‘magical environment’ for your child was exponentially multiplied by more serious factors that paid no attention to the short timeline of ‘Christmas’. Theodore’s medication changes to counteract newfound delirium, the threat of re-intubation for a few days, and a surprise visit to the operating room are just some of the items that immediately jumped to the top of my “holiday to-do list”; items that took immediate precedence and easily put a damper on any lingering ‘holiday cheer’…
BUT throughout these past couple weeks of December, I randomly kept coming back to the classic Christmas tune:
“AWAY IN A MANGER, NO CRIB FOR A BED…”
If you stop to think, you’ll realize that the underlying cause to the majority of our stress comes from wanting to GIVE the very best to the people you love most; and in my case, that is MacKenna and Theodore. But what happens when you’re unable to GIVE your loved ones what you want ? I can’t help but think that Mary, as a new mother, wanted to give much better to her newborn son, Jesus. Mary was forced to lay Him in a smelly dirty feeding trough; she was unable to give her baby what she wanted because “there was no place for them in the inn” (Luke 2:7). She didn’t have a choice. She did her best. She simply loved Him.
Just as there is no way to glamorize the first bed for the Son of God into anything other than a feeding trough that held scraps for slobbering animals, Theodore’s ‘nursery’ for the past four months has been less than ideal according to the standard of motherhood nowadays. I’ve done my best with the circumstances at hand by trading hospital blankets for jersey knit swaddle sets and bringing touches of home to decorate the plain white sterile ICU room, but my mother’s heart still wants to give him more; give him better. It’s intertwined within a mother’s DNA to constantly want to give the best to her children; to sometimes want to give what is not even possible. I can just picture Mary placing her pregnant swollen hand on the inside of her garment and using it as a rag to clean all visible leftover debris out of the manger; without a doubt I can see Mary trembling from exhaustion on her hands and knees, searching for the most premium lumps of ‘hay’ that had not already been soiled or half-chewed in order to provide a “bed” with as much “padding” as possible. I think about how much her mother’s heart must have ached wanting to do ‘better’ for her son …she could not even give Jesus the most basic essential: …“no crib for a bed”. Yet Theodore, even though I yearn for him to have so much better right now, has a crib for a bed… Teddy was still laid in a crib, far more superior to what his Savior, Jesus Christ, ever received as a newborn; not because my son deserved it but because God’s Grace abounds (2 Corinthians 9:8).
So, what happens when you’re unable to GIVE your loved ones what you want ? You don’t. It’s not about YOU and what YOU want to give, it’s about them and what they NEED to receive; and the greatest need is always ‘love’. I’m no ‘Mary, Mother of Jesus’, but I am learning that when the circumstances are out of my hands and the luxury of ‘choice’ is gone, I will simply do my best and give my love.
-️ Momma Bear, Praying Isaiah 53:5
~ TEDDY BEAR PRAYER ~
Dear God –
We praise You; we praise You God that even through it all, Theodore has “a crib for a bed”! Although I want to give Theodore so much more at this point in time, please continue to give me the patience and perspective I need in order to see that there is much more to this hard journey than my natural eyes can see right now. Please comfort my mother’s heart to know that “my best” is good enough.
Thank you, God. Thank you from the bottom of my heart for ALL of the people in our lives who have adopted a “mother’s heart” for our baby Theodore and our entire family! You have angels on this earth who have taken some of the burden from us, and we are eternally grateful for them! Thank you for every last person who has given donations towards the #TeamTeddy830 project that was initiated by two of the busiest and most selfless mothers I know. I pray that not only Danielle & Bethany be richly blessed for their generous hearts, but that every last person who has supported this project sees an increase in their own lives! Thank you God for your overwhelming love that has been shown through every single person who cooks us meals, helps watch MacKenna, (anonymously) blesses us with donations, and surprises us with care packages that support us on this journey. I especially thank you God for every last person who agrees with me in prayer; for those that pray on my behalf when I no longer can find the words to pray myself; for those who spend hours interceding for the finite daily details that lead to Theodore’s overall success! Thank you for allowing the perfect people to cross my path before and during this process; You know God, that every person who has taken the time to give me a kind word of encouragement has helped bring me through one more hard day at a time… Thank you that my 4-year old is such a good sport, so healthy, and so compassionate towards her baby brother. I’m eternally grateful for the family and husband you have given me; they are my stronghold that I love dearly.
Lord, I pray that Theodore continues to make his “slow and steady progress”. I pray that he continues to shock all the doctors by overcoming these next hurdles in his path:
In Jesus Name Theodore will begin to use his pacifier properly. He will activate and develop every muscle in his mouth in preparation for bottle feeding one day! Nothing will stand in his way because Your will is to see him eat by mouth. We pray against the need for a G-tube and believe that all of Theodore’s nutrients will be properly absorbed within his digestive track. When the hospital begins his breastmilk drip feed on January 1st, Theodore will only thrive and chylothorax will continue to be nonexistent! Theodore will not have any aversions to my milk, and sooner than later my milk will be enjoyed in his stomach, and not only his intestines. Thank you that Teddy will advance to “full feeds” much sooner than we think!
In Jesus Name Theodore’s MRI scheduled for this Tuesday will show no signs of new strokes. I pray that his brain is functioning as it should and specifically that the occipital lobe is in perfect condition and that Teddy will enjoy 20/20 vision in his future. Nothing is impossible for you, God! The nystagmus that Theodore currently endures will be GONE in Jesus Name; your timing is perfect and we trust YOU. I declare that all the muscles around Theodore’s eyes will become stronger, and pray that any past neurological problem that may have caused the nystagmus in the first place will be 100% healed!
In Jesus Name Theodore’s right ventricle pressures will drastically improve. Next time they are checked, the Doctors will find the pressure to be under 10 mmHg. His right ventricle is NOT getting tired and only getting stronger every single day. The heart transplant team will not even have to evaluate Teddy because his heart is being made new with every beat.
I will forever proclaim that it is already finished; God, You will restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17). My son will be coming home with his own whole heart in Jesus Name ️
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!