KEEP CALM AND LET THE STORM RAGE ON… 💪

“… The ‘unknown’ never bothered me anyway! “

” ‘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 !