Support for baby Cecilia

Support for baby Cecilia

From Amanda Jo Pasquinelli

Baby Cecilia needs your prayers. The Hawkins family needs your support. The doctors at UVA Children's have been pinballing medical interventions on this sweet baby & can offer no answers about her worsening condition.

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Update #4

28 days ago

Greetings, Champions of sweet baby Cecilia!

Overjoyed to share the best update ever - Cecilia was discharged from the hospital this past Saturday! Check out how happy she is in her carseat! Rosemary is appreciating the small things right now - like just being able to give her a bath & swaddle her. She has a rigorous medication schedule to stay on top of & the new mission is to get Cecilia strong & healthy for her heart surgery this summer! Your support has been pivotal & profound. Alleviating financial stress has been a Godsend to them at this time. Your generosity, care & support is truly felt. Cecilia is happy to be home & back in the loving arms of her family, but she is not quite out of the woods yet. We humbly request your continued prayers for the upcoming surgery & we promise to keep you updated!
With Love & Gratitude,
Amanda Jo & the Müller families

More Info

Cecilia Lillian Hawkins was born on January 24th, one month premature, breech, feet first in the OR as they were prepping her mama, Rosemary for a C-Section. 24 hours later they would learn of baby Cecilia's trisomy 21 (Down syndrome) diagnosis and her complete AV canal heart condition. Her heart surgery is scheduled for this summer. (She needs a patch down the center of her heart and then two new valves on each side of the patch) They brought her home, determined to get her weight up in preparation for the surgery. She was welcomed by eager, loving arms of her siblings Sebastian, Luisa & Oliver. The whole family was happy to have her earthside & Rosemary immediately began researching support resources to navigate their new normal. She trusted that Cecilia was a precious gift & her challenges would only help the family grow stronger & closer in their love for this sweet preemie baby girl.

Saturday, on Easter Eve, when Rosemary & Stephen should have been playing Easter Bunny, they were rushing sweet Cecilia to the ER. She had seen her cardiologist on Wednesday and everything checked out. He told them to keep an eye on shortness of breath due to her heart condition and if it presented, he would get her on a medication to help as they await her heart surgery - closer to when she is 6 months old - a bigger and stronger baby. Saturday rolls around and it’s like any other day with her, until that evening, after mealtime when her breathing becomes labored, followed by a distinctive cry as her arms, neck and torso went stiff. They rushed her to the ER thinking it was related to her heart condition. The team at the hospital was able to prevent Cecilia from going into cardiac arrest. Rosemary, Stephen & Cecilia were then transported to UVA Children’s Cardiac/PICU, two hours from their home in Virginia.

They intubated her, inserted an IG tube and a catheter. They put her on broad spectrum antibiotics -  just in case she had an infection that could have caused the event. Fast forward to Friday, April 5, she has endured so much, hospitalized a week. They had to drill into her shin to get a central line to the marrow. A low platelet count would initiate the placement of a PICC line. They think she might have suffered a seizure or mini strokes and start monitoring her brain activity. An Opthamologist discovers blood behind one of her retina, they order an MRI. After a blood transfusion they discover a clot in her leg. Last I spoke with Rosemary, they were taking Cecilia in for a Spinal Tap, with the notion that a possible viral infection is the cause of her condition. Results from the Spinal Tap were inconclusive.

Meanwhile Rosemary & Stephen are experiencing financial distress. They left California after Stephen lost his visual effects job in the midst of the Writer's Strike. They picked up & moved to Georgia in hopes of starting over in a financially friendlier climate. Their load was light, because they lost nearly all of their furniture, clothes and worldly possessions to black mold contamination in their California rental. Georgia was a struggle. Luckily Rosemary found a job that would allow her to work from home & secure health insurance for the family. (She is currently on Maternity leave, scheduled to be back at work in a matter of weeks.) They picked up & moved to Virginia just before Christmas to be closer to family & more resources. Stephen is working as an assistant carpenter, earning far less than what he is used to. Then baby Cecilia arrives & a tornado of medical expenses pulls the proverbial rug out from under them. This is where you, beautiful altruistic supporters come in....

Any help you can provide would be humbly appreciated. Prayers, encouraging words, and financial contributions will ease their burden tremendously. As the organizer of this crowdfunding venture, I figure with dedicated funding, they can stop worrying about the mushrooming medical debts & focus solely on baby Cecilia's health & recovery. If you prefer to send letters or gift cards, private message me  (click the little envelope contact tab next to my name on the campaign site ) & I will gladly share their home address with you. 

Thank you so much for supporting & sharing their story. When communities come together to lift up worthy families who are struggling, it sends a glimmer of hope that all is not lost & humanity is good & kind. God bless you all!

Warmly,

Amanda Jo Pasquinelli Müller

(Cecilia's Aunt )

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Amanda Jo Pasquinelli posted a new update:
28 days ago

Update #4

Greetings, Champions of sweet baby Cecilia!

Overjoyed to share the best update ever - Cecilia was discharged from the hospital this past Saturday! Check out how happy she is in her carseat! Rosemary is appreciating the small things right now - like just being able to give her a bath & swaddle her. She has a rigorous medication schedule to stay on top of & the new mission is to get Cecilia strong & healthy for her heart surgery this summer! Your support has been pivotal & profound. Alleviating financial stress has been a Godsend to them at this time. Your generosity, care & support is truly felt. Cecilia is happy to be home & back in the loving arms of her family, but she is not quite out of the woods yet. We humbly request your continued prayers for the upcoming surgery & we promise to keep you updated!
With Love & Gratitude,
Amanda Jo & the Müller families

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Amanda Jo Pasquinelli posted a new update:
about 1 month ago

Update #3

Cecilia has made huge strides toward recovery. They weaned her off the Morphine & she has a healthy appetite for bottles of Mother's milk They’ll need to do a procedure called a heart cath to check the pressures and oxygen content of her heart in preparation for her heart surgery. It’s a non-invasive procedure, thankfully. Rosemary & Stephen will likely get to bring her home sometime this week!

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Amanda Jo Pasquinelli posted a new update:
about 1 month ago

Update #2

After 10 tightly swaddled days, sweet baby Cecilia finally gets to be held by her Mama & Daddy. She is so happy to be in their loving arms & we are her for it!

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Amanda Jo Pasquinelli posted a new update:
about 1 month ago

Update #1

Cecilia update! Hello tribe! Your prayers are working! She was taken off the ventilator today. Rosemary is hoping to hold her for the first time in 10 days - but it hasn't happened yet. She is not out of the woods yet, as they are estimating another two weeks of monitoring & medicating in the PICU. Heartfelt thanks for the support! It really does take a village!

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