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Annabelle Eve

$30,510 of $10,000 goal

Raised by 218 people in 1 month
Created December 27, 2017
Sweet baby Annabelle was born a baby sister on August, 18, 2017. A week later, during routine examination, her doctor heard a murmur, and we discovered she had a common heart defect that we thought would be manageable. However after a series of tests we learned that she had another, uncommon defect, that suddenly made her condition more severe.

Baby Annabelle has a complicated little heart, with a significant VSD (Ventricular Septal Defect) and a rare and difficult to manage condition called Pulmonary Vein Stenosis (PVS). While many hospitals in the United States can repair a VSD, Boston Children’s Hospital is one of the only ones that has a formal program for the new, and not well understood, surgery and treatments that Annabelle will have to undergo to combat this otherwise fatal condition.

On December 10th, Annabelle and her parents, Nikki and Greg, flew from their home in Fort Myers, FL to Boston, MA to begin treatment.

Over the next few days, she underwent more tests and procedures, and we came to learn that unfortunately, all four of her pulmonary veins were severely diseased.

On December 14, 2017, Annabelle had open-heart surgery to repair the VSD, but also a pioneering attempt to resect the diseased portion of the veins. She made it through the surgery well, but unfortunately her lung collapsed after the breathing tube was removed, and she had to be intubated again. At this time, she has recovered well enough to be extubated.  She was then placed on BiPAP (a non-invasive form of mechanical ventilation) to support her lung while she continued to recover and now requires no respiratory support at all.

As an early Christmas present, Annabelle was transferred out of the ICU on Christmas Eve to the step down unit! Here she is being challenged to grow and get stronger in order to be able to leave the hospital.

While she has recovered amazingly well from her surgery, she is just beginning the battle against her progressive PVS. What was originally thought to be a manageable defect has evolved into an extremely rare medical condition; surgery and 7-10 day recovery has turned into an extended stay in Boston.

Annabelle’s treatment moving forward will be very involved with frequent follow up visits, including lung scans and echocardiograms, as well as cardiac catheterizations as frequent as every 2-4 weeks, and chemotherapy. While she does not have cancer, the proliferation of the cells responsible for the recurrence of the vein stenosis is treated similarly by use of chemotherapy drugs. This treatment is still somewhat experimental, but it is the best option to treat Annabelle’s condition at this time.

These treatments and the danger of traveling and exposure to germs leaves the family no choice but to remain in Boston for the foreseeable future.

This family has been uprooted and separated by their efforts to provide their baby girl with the best possible care she can receive. Their son, James, 2, has been in the care of Nikki’s mother, who has taken a leave from her career and temporarily relocated to their home in Florida to care for her grandson. Fortunately, after two weeks of not being able to see each other, Grandma and James made the journey to Boston to be together for the holidays.

As Annabelle’s condition remains day by day, the duration of their stay in Boston has become uncertain. The family faces many difficult decisions in the new year ahead - one being whether to relocate their family to Boston in a more permanent manner, or to remain separated for the time being.

So much of Annabelle’s future and her family’s ability or inability to return home to Florida will be determined slowly as we continue to assess and reassess her response to surgery and the treatment regimens to come. Her parents, Greg, a Firefighter and Nikki, a Nurse Anesthetist, are used to being the ones who are hands on in the action, and now are faced with waiting as their little girl fights to get stronger. It’s the hardest thing to sit there and watch, knowing you can’t do anything to help, and as friends, close colleagues, and loved ones, we can’t stand it either.

Although we may not be able to help Annabelle get better, we can help Nikki and Greg by supporting them financially as they try to plan for the year to come. The costs of travelling, maintaining two households, childcare, meals and groceries all add up, on top of the costs associated with Annabelle’s medical treatment, supported by just one income at this time.

Nikki and Greg are reluctant to ask for any help, because the Escarras operate as a family unit, they work hard and they take care of each other- but the outpour of love and support, concern and care they have received has overwhelmed them to the point that it has begun to win over their humility. So we have decided to create this space for loved ones alike to offer their support at their discretion, and to stay in touch, offering updates when we can, without overwhelming Nikki and Greg with emails, phone calls, and texts.

Although there really isn't a "goal" amount of money raised that they hope to achieve, we have chosen this figure to represent the kind of costs they will be facing over the next few months, as their situation remains uncertain. Every little bit will help, and Nikki & Greg, and family, are so grateful for any and every donation they receive. 

They would also prefer to keep this fundraising effort off of social media, so we ask that you please respect their wishes, and only share the GoFundMe link privately via email or private message rather than public posting on Facebook.

Everyone’s support - financial, love, and best wishes -  is greatly appreciated.










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On this day in 1952, Queen Elizabeth II succeeded her father to the British Throne. Today, she is the longest reigning Monarch in British history, at the helm for 66 years.

In more important news, Annabelle is home from the hospital!

A week after she was admitted back into the hospital, she underwent surgery to place her G-tube on Friday February 2nd. Recovering well over the weekend, she was discharged from hospital on Monday evening.

The G-tube (Gastrostomy) is a feeding tube that goes in her belly, a semi-permanent solution to the NG (Nasogastric) tube that was previously seen in her nose. This has become a necessity in her battle to gain weight and continue to grow.

As mentioned in the previous update, Annabelle has been diagnosed with Pulmonary Arterial Hypertension as a result of the damage to the right side of her heart. Along with medication, she is now required to wear oxygen at all times, so although one tube is gone from her sweet little face, you can expect to see a new one take its place.

Another (her third) Cardiac Catheterization will be scheduled in approximately 2-3 weeks, and at that time, doctors believe they will have a better understanding of her condition as a whole. Until then, Nikki, Greg, and big bro James look forward to Annabelle's company at home.

On another note,

If you weren't aware, February is Heart Month, and as such we wanted to take the opportunity to help support and raise awareness about Congenital Heart Disease (CHD) in Annabelle's name.

Mended Little Hearts is an organization dedicated to supporting families of children with CHD. They put on an event called 'Roar N Run', a virtual charity race, that raises money to help them support families. Auntie Kristin has put together a team in Annabelle's name - Annabelle's Walk for ❤️ Warriors - that we welcome everyone to join. The digital event (meaning anyone can participate from anywhere) runs from Weds February 7th - Weds February 14th.

If you're interested in participating in the event, or making a donation to sponsor the team, use this link:

https://www.crowdrise.com/roarnrun2018

Select "Join the Event" if you want to participate. Then select the "Register for the Event" option.

OR

Select "Donate to a Fundraiser" if you'd like to sponsor the team without participating.

Annabelle's Walk for ❤️ Warriors

The Escarras and Marenos, plus all extended family, are so grateful for the support that Nikki and Greg have received, not just through this fundraiser, but through the love and prayers sent by everyone. We want to pay that forward by doing what we can to help raise awareness and promote the organizations that work tirelessly to help families battling CHD. Whether you choose to participate in the Roar N Run, any other awareness event, or even just wear red one day and tell everyone why, we appreciate your support :)

xo

#AisforAwarenessAisforAnnabelle
Representing in Red and Rocking her Scar
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Hi Everyone,

It’s been a busy few days for Miss Annabelle.

After two weeks of freedom, on Friday Jan 26 she was admitted back to the hospital to undergo a sedated Echo and Lung Scan. The results showed there was some narrowing of at least one vein, leading them to schedule another Cardiac Catheterization. They decided to keep her in hospital over the weekend.

On Mon Jan 29 she had her Cath. There was a lot of work done - 3 out of 4 veins needed ballooning to help open them back up. She stayed intubated (the breathing tube) after the procedure, so she spent the night in the Cardiac ICU. Tuesday morning she was extubated.

Today, Wed Jan 31, we learned that the Cath was successful in opening up her veins again. Let’s hope we get a little longer this time before we have to come back for another one!

During the Cath they were able to take a much closer look at her heart and lungs, which revealed that she is still struggling with some heart failure. We are hoping that this will get better now that her veins have been opened up again.

They also learned that Annabelle now has Pulmonary Hypertension as a result of all of this. We are starting her on a new medication, and she will need to wear Oxygen as well to treat this.

On top of all this, we are still fighting the battle of her weight gain and feeding issues. She will be having another surgery to place a semi-permanent feeding tube into her belly (a ‘GI tube’), to replace the more temporary one in her nose. We do not have this procedure scheduled yet, but will update again as we can.

As we said, very busy few days for Annabelle and Family.

We are pretty emotionally exhausted after this weekend, so we appreciate everyone’s love and prayers more than ever right now xo
On Friday, before her Echo & Lung Scan
Today, resting after a busy few days
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Hi Everyone,

Hope you’re well and your new year is off to a wonderful start :)

After 4 weeks, and her first Christmas, in the hospital, Annabelle has been well enough that she was released from inpatient care earlier this month. Fortunately, we were able to find an apartment, with just enough room for the family to settle in, just minutes away from the hospital.

On a positive note, an ultrasound earlier this week showed that the blood clot that had formed in Annabelle’s leg has dissolved! After 5 weeks of receiving Lovenox shots twice a day, we are thrilled to be done with that :)

After some tests this week, Annabelle has begun to show some signs of regression. Though we were hoping for better news, this is expected with her progressive disease. Some new medications have been introduced to address these symptoms, and continue to promote her growth and weight gain. An echo and lung scan are scheduled for next week, which will be followed by her second cardiac catheterization.

We will get back to you with more updates when we have more information to share.

Thank you all so much for your generosity and support. We appreciate it so much!

One thing’s for sure- Annabelle’s great at being really, really adorable!


P.S.- We have a Facebook group (it’s private) dedicated to Annabelle, where you can share your thoughts and best wishes, as well as see photos and updates more often. If you’re on Facebook and would like to join, message me back and we’ll get you an invite!
Discharge Day! Excited to go outside!
Just relaxing
Being adorable!
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Hi Everyone!

We want to take a moment to thank everyone, so, so much for the overwhelming amount of support we have received over the last few days with a quick message from Nikki and Greg :

Greg and I are overwhelmed with the wealth of love, support, and generosity we have received over the last few days. Words cannot convey our gratitude to everyone who has contributed. We are so blessed. Thank you, thank you, thank you!

Annabelle is working hard to get stronger everyday, and is looking to start the new year off right, tipping the scales at 10 lbs as of yesterday! Our baby girl is feeling all the love, prayers, and best wishes being sent her way :)

Thank you so much for all your love and generosity, and we wish you the very best in the new year to come!
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$30,510 of $10,000 goal

Raised by 218 people in 1 month
Created December 27, 2017
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