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
#FallingRightSideUp
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
#FallingRightSideUp
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
#FallingRightSideUp
UPDATE …
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…
FALLING RIGHT SIDE UP 