Support Paisley's Heart Transplant Journey

Hello! My name is Josephine, but I go by Josie. My fiancé's name is Tommy. We have a 2.5-year-old son named Philip. About a year ago we found out we were pregnant! After going to the first ultrasound, we quickly realized this was going to be a tough pregnancy. We found out we were pregnant with mono/di twin girls.

From the first ultrasound, we could see that twin b was developmentally behind. She had a congenital heart disease, secondary to acrania, and hydrops. After taking many trips to UNC hospital in Raleigh, they told us it would be best to do a selective termination on Twin B because she would not be able to survive outside of the womb. If we continued to go further with the pregnancy with twin B, she could harm Twin A. With many back and forth feelings, we decided to do the procedure and do what's best for our one healthy baby. As we went back to UNC, they did one last ultrasound before the procedure and found abnormalities in twin A. They took a careful look at her heart and saw that her heart wasn't fully developing. They could only see the left side of her heart and didn't see the right side. Most of the doctors encouraged us to terminate the entire pregnancy. We decided to get more opinions and went and spoke to cardiologists at Levines Childrens hospital in Charlotte NC. They discussed that they have seen this before and if we decided to keep twin A, they had different surgery options that would help her live a good life. That was our decision to go back to UNC and do the selective termination of twin B.

3 days before Christmas at 18 and a half weeks pregnant we went to do the procedure, and my twin pregnancy turned into a singleton pregnancy. The rest of my pregnancy was very closely monitored. The last two months of being pregnant, we went and had meetings at Levines Childrens hospital with many different pediatric heart surgeons and they explained to us the different surgeries they could do to help our girl. We knew that right after birth, she had to go straight to the NICU to get put on an IV with medicine to help keep a small piece in her heart open called the ductus. That piece will keep her alive until it was time for her first surgery. We discussed a few options of surgery, but nothing was final until she was born, and they were able to actually see her and see what the best option would be.

On May 14th, 2024, Paisley Ann Tharp made her arrival weighing 7 pounds 2 ounces! A few minutes after she was born, they took her straight to the NICU. Along with her birth, her twin sister, whom we named Penelope, was considered a still birth because she was shortly after delivered attached to the placenta. We were able to get her remains cremated and safely kept.

About 9 days after Paisleys arrival, they took her for a Cath lab where they took many pictures of her heart to see what surgery would be best for them to do. After the Cath lab, they said that they can do either a catheter procedure where they just put a small tube into her ductus to keep it open until the next step of her surgery, or they can do an open-heart surgery where they can do a BTT shunt. We chose the catheter because it seemed so easy and less invasive. They went in the next day to do that. Shortly after, called us and said it was unsuccessful because her ductus was too big for the tube to stay in place. They believed the shunt would be the next best option. 4 days later, they proceeded to do the BTT shunt. Paisley was doing great, and everybody was very hopeful with this. She handled it well and was onto the progressive unit to recover and get ready to come home. About 3 days later, Paisley wasn't acting herself and her heart rhythms were not right. They did some lab work and saw her troponin levels and lactate levels were through the roof! Troponins show stress on the heart and for them to be normal, it needs to be under 6, Paisleys were up to 10,000! She went back to the ICU and was put on milrinone and respiratory support while we figure out what happened. As they days went on and many doctors were discussing Paisleys case, they did another Cath lab and saw her coronary arteries didn't look good. Her case was presented in the cardiac meetings, and they finally came to a tough decision, we had a heart failure meeting. This meeting was the last resort to Paisleys recovery. We discussed that it was time for a heart transplant. My fiancé and I had to have so many meetings with the entire transplant team, the infectious disease team, the doctors, the cardiac team, and Paisley had to get so much lab work done for her to get on the list.

She was finally listed on July 2nd as status 1a. As the time goes on and we wait for this call, we are trying our best to save up as much money as we can for when its time.

My fiancé is our soul provider and the only one working right now. He pays all of our bills. He's had to take many days off this year due to common sicknesses, the delivery of our girl, me being admitted back into the hospital after the birth with post-partum pre-eclampsia, taking days off to meet with surgeons, us both needing to be at the hospital for her surgeries, and many, many more reasons. He doesn't have much vacation/sick time so when we do get the call about Paisleys transplant time, he needs to be there, and for when she comes home as well.

The money raised will be used for medical expenses, unexpected expenses, and bills for when my fiancé will be out of work. We are planning for him to be out of work from transplant time and about 6-8 weeks after. He will be with us during her recovery time. The first six weeks are very serious as we need to be extra careful with any interactions with anybody.

Anything helps and we are so thankful for the love, support, and prayers we have been receiving this entire journey. We know there is great outcomes to happen and cannot wait to bring our baby girl home and not be divided from home and the hospital.

We are getting great help and support now as we travel every single day, about 40 minutes away, to spend with our girl and show her that she is so loved.

This journey has been a little bumpy as we manage a home that is so divided and separate, but I know, and I pray we will be together soon!