Baby Cecilia needs your prayers. The Hawkins family needs your support. She has a serious heart condition that requires surgical intervention. Her surgery is scheduled for this summer.
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Post-surgical update from Rosemary:
Cecilia underwent her heart surgery and it was successful, thankfully. The surgeon let us know that her lungs are absolutely fine even though babies with Trisomy 21 tend to have lungs that are damaged because of the heart defect. He told us the heart defect had no effect on her lungs (this is a huge relief). She will be monitored for the next 24-48 hours for fluid build up and inflammation, which is common with a major surgery. Otherwise, she is doing great and the repair has been done! Our little fighter angel baby is going to show us so much!
Thank you for the outpouring of support & prayers!
God is good!
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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Post-surgical update from Rosemary:
Cecilia underwent her heart surgery and it was successful, thankfully. The surgeon let us know that her lungs are absolutely fine even though babies with Trisomy 21 tend to have lungs that are damaged because of the heart defect. He told us the heart defect had no effect on her lungs (this is a huge relief). She will be monitored for the next 24-48 hours for fluid build up and inflammation, which is common with a major surgery. Otherwise, she is doing great and the repair has been done! Our little fighter angel baby is going to show us so much!
Thank you for the outpouring of support & prayers!
God is good!
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Prayer Request for Sweet Cecilia & her Medical team!!
Cecilia’s heart surgery is scheduled for tomorrow at 8:00am. Cecilia won't won’t be reunited with Stephen & Rosemary until 2-3pm
They will be doing a complete heart and lung bypass, will repair her heart and then take her off bypass. They are very concerned about her lungs post the bypass. So, our prayer is that her lungs settle and adjust after her heart is repaired.
Mark Roeser, MD, is her pediatric surgeon at UVA Children's Hospital. He is also greatly involved in the lung transplant program at UVA Medical Center and oversees the EVLP Lung Transplant program. Pray for him, that God guides his hands tomorrow.
Please continue to pray for her, the surgery and her recovery.
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Sending out a ginormous prayer request to our family of sweet Cecilia supporters.
Rosemary & Baby Cecilia have landed back at the PICU. They were transported at 2:30am last Thursday morning. They thought she has pneumonia so they began treatment for that and then she had to be intubated so they could get an IV in to get labs and viral panels done.
They tried to get an IV in 6 times and each time the vein blew. Just awful. She’s back on morphine and all the heavy sedation drugs. Likely her heart is contributing to all of this.
Cecilia was extubated Sunday morning so she is no longer on the ventilator. They determined she did not have pneumonia but that her heart failure was causing her fever.
They plan to meet at conference with the cardiology team and surgeons to discuss a surgical plan, likely her heart surgery will be over the next week or so.
Rosemary is relieved they are coming to that conclusion bc her body can’t handle this trauma or shock anymore. It’s a lot on her & Rosemary & the family.
Rosemary could potentially be in the hospital with Cecilia for the next month. They need her to get stronger before she has her heart surgery. They’ll be doing a heart cath likely later this week which gives them a better understanding of her heart function, pressures, and will get images. She will need to be intubated again for the procedure.
As of now she is not strong enough to undergo a bypass. They’re thinking an extended hospital stay is the safest for Cecilia at this point because she can’t handle anymore emergent transports as she has had 3 already.
Please pray for our sweet little fighter. This has been such a difficult journey for the Hawkins family. They are trying their best to stay positive & find the glimmers in the situation.
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Baby Cecilia was transported Tuesday because she had a fever (99.9) She saw her cardiologist and he didn’t like the sound of her lungs. Upon admittance to UVA they started her with Tylenol and did a viral panel which came back negative having tested for over 30 viruses. She’s been on Tylenol every six hours and her fever went from 102 to 99 back up and back down and now back up again. They also started her on an antibiotic for a bacterial infection just in case a bacteria grows in her culture over the next few days. They are trying to find the cause of the fever. She also has been on a heart medication that has since caused pulmonary edema so they are trying to manage that.
Yesterday her fever was down to 98.5 but her breathing was still very labored likely from the medication she’s been on so they’re weaning her off of that. She may need more respiratory support and if thats the case she will have to be moved to the PICU
Rosemary has her work computer to keep up while bedside at the hospital. She's all out of vacation days. No rest for the weary.
Last night she had a great night! Fever is gone and her labored breathing subsided! She’s having fortified formula now which will help her gain weight faster. Hoping we will get home by the weekend.
Please keep the Hawkins family in your prayers. Cecilia's heart surgery is two short months away. Her condition is very serious - so much so that a simple fever requires medical transport, hospitalization & medical monitoring. Rosemary & Stephen are so grateful for your continued prayers & support. It really does take a village!
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Baby Cecilia was transported back to the Children's hospital on Tuesday with a fever (99.9). She saw her cardiologist and he didn’t like the sound of her lungs. Upon their arrival at UVA they started her with Tylenol and did a viral panel which came back negative having tested for over 30 viruses. She’s been on Tylenol every six hours and her fever went from 102 to 99 back up and back down and now back up again. They also started her on an antibiotic for a bacterial infection just in case a bacteria grows in her culture over the next few days.They are trying to find the cause of the fever. She also has been on a heart medication that has since caused pulmonary edema so they are trying to manage that.
Yesterday her fever dropped to 98.5 but her breathing was still very labored (likely from the medication she’s been on) so they’re weaning her off of that. She may need more respiratory support and if thats the case she will have to be moved to the PICU.
Rosemary has her work computer to keep up while she's bedside at the hospital. She used up all her vacation days during Cecilia's last hospital stay. No rest for the weary.
Last night she had a great night! Fever is gone and her labored breathing has subsided! She’s having fortified formula now which will help her gain weight faster. They hope to get her home by the weekend.
Please continue to pray for the Hawkins family. Her heart condition is still very serious. So much so that a fever warrants medical transport & a hospital stay. They are two months away from baby Cecilia's heart surgery & ever so grateful for your continued prayers & support.
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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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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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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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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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