Hanley's Journey❤

Hello Everyone, This little beautiful baby girl is Hanley❤ she's one of my good friends, Shilo's twin baby girls❤ please take a few mins out of your time to read her story and if you can and are able, please donate whatever you can, every penny counts❤I decided to make this Go fund me account for Hanley in order for her parents to have less stress in these times of need. With even having the best jobs, working the long hours, it's just never enough, especially with medical costs, with any extra financial help, she will be able to commute back and forth making it financially easier to see Hanley every week instead of every other week. Thank you in advance God bless you all and many, many blessings! and well wishes! to you my friend, Shilo and husband Ian❤ stay strong! XO Here's her story via her mother Shilo: Hey everyone. We haven’t really publicly shared much. It’s finally that time ....Hanley is going to need all the thoughts and prayers she can get, so thought we’d finally share her story. Finding out we were pregnant was amazing. The first ultrasound we discovered I was high risk with twins. As the pregnancy progressed it turned out I have uterine didelphys (2 uterine horns). So essentially both babies were in half a uterus together putting them at a high risk for premature birth. At our 17 week anatomy scan they were unable to visualize a stomach bubble on Hanley. 3 more weeks in a row they still were unable to visualize a stomach bubble. The doctor then mentioned that if this continued or if any other symptoms developed for diagnosis that a condition called esophageal atresia was possible. Where the esophagus does not attach to the stomach and or a fistula to the trachea. Week after week no stomach bubble yet no other symptoms. 28 weeks is when it’s officially diagnosed. At our 28 week ultrasound, no stomach bubble and her amniotic fluid was finally increased signifying she definitely had the defect. This increase in fluid often causes preterm labor as well and sure enough at out the diagnosis I was in labor at 28 weeks and did not know it. They successfully started preparing the babies for the outside world and also stopped labor. We then prepared to deliver at a hospital with a children’s hospital and met with a pediatric surgeon. Essentially she would need some kind of surgery soon after birth but her true condition would not be known until birth. We were desperate to keep them in there as long as possible for her to be big and strong for surgery. They came at 31 weeks and Hanley’s first surgery was at 2lbs 14oz when the placed her feeding tube which tore her stomach twice at the time. In the NICU she healed and started getting tube feeds. It was determined that she was one of the 40% of this condition that are isolated with no related VACTERL conditions. Esophageal atresia affect 1 in 4000 births and 1500 a year in the US. Almost all these babies stay in the hospital until they are repaired as it is too risky and dangerous to send them home as there is no where for secretions to go. Hanley failed intermittent suctioning and a staff member came up with a thought to just leave an open tube in her nose and let it drain. It worked so well and with my critical care background the doctors and surgeons were comfortable letting us take her home. So we took our girl home to thrive enjoying ever minute Preparing for the next step that would take months. During Hanleys time at home, there have been a few struggles but from what we hear with other children that have this they have been nothing. As he only grew and we knew the repair was getting closer, we started reading other families testimonials and made a very big decision in her medical care. After weeks of research before their birth, and months of research since. Boston Children’s Hospital is number one for this condition at the current time. We called and got information and within five minutes and knew that taking her to Boston would be what is best for her best possible future. It was a month or two week, so we made appointments followed by surgery right after and waited. Last week we packed up the girls and everything needed for The next few months and essentially packed our car and moved up to Boston. They have great programs up there, so we have a host family that’s allowing us to stay in their home. Daddy is staying up there with her and will work at his works location about an hour from the hospital, and if need be he will take FMLA. I only work weekends and I’m not eligible for leave yet, so will be commuting back-and-forth with amazing flexibility and support from my work team. This was a no brainer so we are making it work. Hanley had all of her big tests this past week. And everything came out about the way we expected with the time frames we were expecting as well. She is going to have the Foker process. It’s a two surgery process. The first surgery they put in fine sutures and run them outside the body and stretch her upper esophagus and her lower esophagus. This process takes about two weeks give or take and which she will be intubated and sedated. Then a week or two to wean her off the meds. So we are expecting her to be paralyzed and intubated for about a month. Hanley does not have much lower esophagus and her repair will be much trickier and a challenge even the doctor that does this all the time for many years has said, but has also said that they have repaired similar cases before successfully. Which made our hearts full that we made the right decision for her. After The two weeks of stretching (or until the ends are ass each other). they will do her repair. Give her a few days and then start the weaning process to come off the medications and wake up. They then will do a swallow study to check for leaks and also aspiration as a commonly related issue. They may in the process unavoidably pull her some make up causing severe reflux, so she may need another surgery or two after the repair. All of which Boston will handle and perform Up there before she comes home. She most likely will also need a series of dilations at the site of repair after her surgery. Once she is maintenance only she will return home, so we are figuring she will be up in Boston for a total of 3- 4 months. Our hope is afterwards she can be maintained here at in her home state by her surgeon here. Hanley is such a sweet tough little so that we know with our love and support can get through this! Her first surgery in Boston is February 28 so we ask for all the prayers and positive thoughts that day. We will use this page to post updates and pictures of her journey, as well as just happy pictures we have of her at home on a tough day when we need that reminder of whatever little girl is like when she is awake. For anyone that has made it this far reading thank you for your love and support. Hanley appreciates everyone rooting for her. All of the doctors and nurses up in Boston are flabbergasted that she requires no medical care for her condition and has just been draining to gravity at home for four months without a single medical interventions such as suctioning or respiratory infections. They say they have never seen such is stable EA patient in their lives. So that gives us hope that she will defy some odds in the EA world and hopefully have a seamless journey. ❤️❤️❤️

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Organizer and beneficiary

Francheska Alvarado
Allentown, PA
Ian Vernon

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