However, the very next day Crystal and her husband Devin received devastating news: the twins were conjoined, and not expected to survive the pregnancy. “I went from the highest of highs to the lowest of lows in 24 hours,” says Crystal.
After tests revealed that there were no chromosomal defects and that the babies had two separate hearts, the chances for survival increased, and the Raymonds began making tentative treatment plans. As the due date approached, Crystal and Devin left their home in Michigan for The Children’s Hospital of Philadelphia to prepare for the twins’ births and subsequent care. On April 1, 2011, Faith and Miracle were born, beating the odds.
Their births were just the beginning of a very long hospital stay that continues to this day. After months of preparation, the twins underwent a successful 12-hour surgery in December that separated their shared intestines, their two fused livers, and the pericardium of their hearts. The surgery was necessary for the twins as Miracle will need future heart surgeries that can only be completed if they are separate.
While Faith was discharged the day before her first birthday, Miracle has faced complications – including a severe respiratory infection – that has kept her hospitalized. Throughout this journey, the Raymonds have spent more than 390 consecutive days at the Philadelphia Ronald McDonald House at Chestnut Street. From the meals to a place to rest after an exhausting day, the House has made a long time away from home more manageable for the Raymonds.
“You have a place where you can lay your head and be comfortable,” says Crystal. “People actually make you home-cooked meals. Sometimes you get so caught up in the hustle and bustle that dinner is the only meal you eat each day and it is so nice that someone actually makes you a decent, home-cooked meal.”
The support from other families has also been especially helpful. “It is nice that you have other people that you can talk to and relate to, or share stories with and get hope,” Devin explains. Crystal agrees. “Once you start talking to other people, even if they aren’t going through the same situation, they are still going through something. You can still relate to each other,” she says. “You go to dinner and talk to each other. It makes it a lot easier.”
Spending more than a year at the House has helped the Raymonds create lasting friendships. “We’ve met quite a few different families that we spend time with,” says Devin. “Being here as long as we have, we’ve seen a lot of them come and go. We still have relationships with them – from other states even. Families we still talk to and keep up with. It is nice to have another support group.”
In addition, while Devin’s job allowed him to transfer to Philadelphia and continue working, the cost of a hotel or even an apartment for over a year – on top of the cost of maintaining their home back in Michigan – would have been prohibitively expensive. Without the House, says Crystal, “We couldn’t afford to live in the city.”
Staying at the House has also enabled Crystal to be close by her children’s sides at the hospital every day. If the Raymonds had to pay for other housing, Crystal would have been forced to get a job to try and make ends meet – a significant challenge with two hospitalized children. “I would say on average I am here 10 to 12 hours a day,” Crystal says. “That doesn’t work well with working. Without the House, I wouldn’t have been able to spend nearly as much time at the hospital and I probably would have gone crazy.”
The Raymonds do not know how much longer they will be in Philadelphia. They have at least two more months of classes to learn how to care for Miracle’s tracheostomy, and Miracle may need additional heart and lung surgeries before being discharged.
Initially, Devin says, they set timelines for everything, such as being home by Faith and Miracle’s first birthdays. “In our mind we had dates set up for when this would happen and when that would happen. The more you do that, the more you can sometimes get upset with things or discouraged.” As a result, the Raymonds have learned to take everything one day at a time and “not to rush things and just kind of let the course go,” Devin explains. So for now, the Raymonds continue waiting patiently for the day they can finally bring their baby daughters home.