Our sweet Sloane has been a miracle baby in so many ways. In spring of 2020 (before we knew just how crazy Covid-19 would become) we decided to pursue having a child through IVF.
Although the IVF process can certainly be overwhelming it truly went so smoothly for us. We started our IVF Cycle on June 14th full over nerves about the shots but so excited about the possibilities. Altogether we retrieved 18 eggs, 14 of which fertilized and 9 made it Day 5. They chose the most perfect embryo for transfer on July 2nd and comment so many times about how awesome the embryo and chances looked.
By July 6th we already had a positive test and were sure the hardest part of our journey was now over – we were so wrong.
Sloane has certainly put us through the ringer multiple times over the last 24 weeks. At our routine 10 week bloodwork appointment we found our that there was a chance I had a positive CMV infection which would cause serious birth defects. After more detailed anti-body analysis they found out it was an old infection and would cause her no harm – that was a long two weeks of waiting.
At our 13 week ultrasound we found out that this sweet embryo that we had been certain for weeks was a boy was actually a super feisty little girl. As thrilled as we were there was again more concerning news. This time that her NT measurement was on the upper limits of normal at 2.9 cm. The doctor recommended we pursue genetic testing to confirm that there were no severe chromosome abnormalities. We headed into another long, hard 2 weeks of waiting to find out what awaited our sweet girl. Luckily, nothing showed up on the genetic test and the doctor said if anything she may have a small heart defect that is normal in IVF babies. We would have a fetal echo at 24 weeks to confirm all was good. We felt we were truly in the clear of major problems and celebrated the good news.
At our 20-week scan on November 5th our world completely fell apart. Although Sloane looked great otherwise the doctor identified a large mass on her heart. At the time the doctor believed it to be in her Right Atrium and called it a rhabdomyoma which is strongly associated with a rare genetic disease called Tuberous Sclerosis. We were advised to consider terminating and set up to see pediatric cardiologist at the University of Kentucky in two weeks – another long grueling two weeks.
On November 17th we had our long-awaited appointment at UK. After the sonographer took the scan and shared the images from our fetal echo with the doctor we were taken back to a room to take to wait to speak with him. Before he had even spoken with us he had already been on the phone with the head of pediatric cardiology at Cincinnati Children’s Hospital and sent the images there. Sloane was diagnosed with a pericardial teratoma – an extremely rare tumor on the outside of her heart. Although this tumor isn’t usually cancerous it is aggressive, large, and and so rare that there just isn’t much research or other cases that the doctors can base treatment on.
On November 25th we made the trip to Cincinnati Children’s Hospital to meet with a team of doctor’s to determine a treatment plan for Sloane. The team was really wonderful but it was overwhelming to say the least. The doctor’s felt that the tumor was continuing to grow but the largest issue Sloane was facing was the fluid building up around her heart called pericardial effusion. Although the fluid was to be expected due to the stress her heart is under due to the tumor the main concern was that it would begin to gather in other organs and places as well. They told us to remain hopeful that Sloane would one day come home but made sure we also knew how serious the situation was and how long this journey may be.
I am perhaps most thankful that in the course of all those meetings no one suggested we terminate or not try and save our girl. Our main goal at the end of the day was to keep Sloane in-utero and healthy as long as possible so she will be strong enough to survive the heart surgery and journey that await her at birth.
And that is where the posts on the blog pick up. We hope that you will join us in praying that God performs continued miracles in Sloane and keeps her as healthy as possible. We know God will work through Sloane and in Sloane in the weeks, months, and days ahead.
One last thing – you may wonder how we decided on the name Sloane. After our UK appointment we decided that the baby really needed a name so we could talk to her and pray over her. We knew she needed a name as strong as she is. Sloane means warrior so we settled on that. We know our girl will more than live up to that name.