Love, Lucy

Love, Lucy

From Sarah Sherry

We're fundraising to buy 300 loveys for the miracle babies of the Garbose Family Special Delivery Unit (SDU) at the Children's Hospital of Philly (CHOP) and the NICU/PICU at Goryeb Children's Hospital.

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What is a Lovey?

According to babysleepsite.com, "any comfort object that a baby or toddler brings to bed, and which provides comfort and soothing." For us, it's specifically Aden and Anais Loveys that we've arranged to get at wholesale pricing for donation to miracle babies.

The $

Please note: No money is retained by us - all money goes straight to the Loveys - straight to the babies and/or mommas-to-be. We will make the deliveries in-person in coordination with Lucy's follow-up appointments at CHOP and Goryeb, we're frequent flyers and will be for quite a while.

If you would like to donate a different dollar amount, simply edit the amount at checkout. 

If the total funds raised don't correlate to whole Loveys, Ben and I will contribute any additional dollars needed to round up to purchase the next Lovey.

About Lucy

To summarize Lucy, we say she's a miracle. She's simply, but oh so completely, a miracle. 

We have 19 lbs of medical records that detail Lucy's first 3 months of life - I'm not exaggerating, literally 19 lbs according to the USPS, and that's just the first 3 months. For comparison, Lucy at 10 months is a little over 17lbs.

She is not weighed down by her 19+ lbs and counting medical history, nor is she defined by her diagnoses. However, we struggled with the idea of sharing her story - because we were worried that it could come to define her or somehow limit her, and selfishly because the early months are traumatizing, by far the darkest days of our lives.

However, last week, at a cardiologist follow-up appointment we met a pregnant woman with a cardiac defect diagnosis for her baby - and everything changed. I saw how terrified she looked, and the PTSD set in. I realized we were in her shoes exactly a year ago. So many tears, so much anguish and conflicted emotions. It's normal to be scared and anxious as a new parent - but add in a cardiac or other birth defect diagnosis? It can level you. And that's just knowing about it. The worst days, like those that make up Lucy's medical records, happen after the babe emerges from the safety of the womb.

Recognizing the emotionally worn expression, I shared an overview of Lucy's story with the momma-to-be, showed off Lucy's scar, and said frankly: she's amazing, my perfect miracle. After her appointment, our new friend came back to see us and thanked us, tears in her eyes, and said that seeing Lucy made her feel reassured, that, for the first time, she actually believed that everything could be ok.

Seeing how touched this momma was by Lucy made me realize how much hope and courage she inspires - in me and Ben, our friends and family, doctors and nurses - and how the story of our miracle needs to get out, particularly to our fellow families terrified by the unknown outcome of their babies' lives.

Lucy's story, so far, is unbelievable and a case for the power of modern medicine. I think, more importantly, it's a case for the power of love, faith, and unyielding hope. It by no means is over - we have yet to go 1 week without 2 or more appointments - but she's not only alive, she's flourishing. She is an inspiration to believe in the resilience and power of the littlest among us. And we feel compelled to share her courage and strength with other families - through the donation of a Lovey to the baby and a note from Lucy - to help bring light during the most treacherous of times with a message of resilience, courage, and mounting insurmountable odds.

An overview of Lucy's medical history, thus far:

  • 21 weeks in utero: Diagnosed with a congenital heart defect (Truncus Arteriosus type 1) during the 20 week anatomy ultrasound
  • 23 weeks in utero: Diagnosed with 22q.11 deletion syndrome (genetic syndrome - random, not inherited)
  • Day 1, 7:03 PM: Lucy arrives, right on time and perfect.
  • Day 3: Open heart surgery to repair Truncus Arteriosus. Surgery is complicated by her tiny pulmonary arteries (PAs) and when taken off bypass support, her O2 desaturates to the point she sustains brain bleeds due to the O2 loss - she is rushed to catheratization lab for emergency PA stent placement.
  • Day 4-5: Lucy has 3 seizures - they register on the EEG, but no clinical signs as she is still under a paralytic and heavy sedation. Mom and dad receive the first call at 3AM - heartbroken and terrified about what the implications are.
  • Day 6: CT scan shows "devastating brain damage" to the point where Lucy would either be a vegetable, or not survive, when taken off the current life support. Mom and dad are beyond devastated, tormented, and unable to process this development. We're told we may soon have to make a decision about support. The worst day/night of our lives.
  • Day 7: Mom and dad push for MRI - brain diagnosis does not seem possible - even paralyzed and sedated by pain meds, we feel Lucy is there. In fact, the MRI nearly reverses the brain damage diagnosis - "it's not that bad!" Brain damage severity is within range for 22q.11 deletion syndrome.
  • Day 15: Clot in Lucy's PA causes plummeting stats and sends her to emergency cath lab to place a new stent and pin the clot to the wall of the artery
  • Days 25-53:: Chylothorax
  • Day 63:: Vagal nerve event requiring resuscitation and sending her back to the ICU. 
  • Birth-Day 142:: Staph infection in her midsternal incision. Several scary infection flare ups, a revision surgery, over 10 rounds of IV and oral antibiotics, wound vacuum.
  • February: Planned trip to cath lab for 2 new stents in PAs.
  • April: ER trip to Goryeb for respiratory distress. Diagnosed with reactive airway disease after 4 nights in the PICU.
  • May: Gtube surgery
  • August: Gtube surgery and upper endoscopy in attempt to determine cause of internal bleeding

...To be continued...

About our Lovey recipients:

The Garbose Family Special Delivery Unit (SDU) at CHOP enables mommas to deliver their babies diagnosed with birth defects safely, get baby immediate treatment, and stay as close as possible post-birth (down the hall from the ICU). Loveys delivered to the SDU will go to babies like Lucy who are born in very uncertain and terrifying circumstances due to their prenatal diagnoses - often having to go immediately to the ICU. A Lovey offers soft cuddly comfort to baby and is a visual symbol of love and a bit of normalcy for the parents.

Knowing Lucy's diagnosis, we knew she needed to be in the BEST pediatric hospital for her open heart surgery but I was also terrified of a birth filled with interventions that would compromise her health and have her whisked away from me, at a time when she needed our love the most. Our experience couldn't have been more perfect at the SDU: a midwife delivered Lucy, without any interventions, on her due date after 17 hours of labor at our apartment and 2.5 hours in the SDU with Ben and our amazing doula, Tammy. Her apgar scores were 8 and 9, and I got to hold and cuddle her, twice. And then we got to go visit her immediately in the cardiac intensive care unit on the same floor - where her Lovey stayed by her side the entire 2.5 months she was at CHOP. 

Goryeb Children's Hospital in Morristown, NJ is no CHOP, but it is an outstanding hospital and the miracle workers it employs in the PICU / NICU and throughout the hospital are just as magical for the babies and children they save. We've been impressed since our very first visit by the genuine concern, intelligence, and time spent by each specialist with our little miracle. They believe Lucy is not defined by her diagnosis and enable and support us in fighting any obstacles that prevent her from flourishing. By donating Loveys to the PICU/NICU, we will help give faith and hope to the babies and families that are in the hands of our local heroes.

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