A Tiny Heart with Just As Much Love to Give

This is my family at our home-away-from-home, the Ronald McDonald House of Chapel Hill. There’s my husband John, our two sons Gabriel and Matthew, our daughter Eliana (we call her Ellie) and me, Danielle. Eliana was born in October 2012 with three heart defects, and couldn’t go home for almost three months. Luckily, the Ronald McDonald House was there for us, and welcomed us back for all of her follow up visits and surgeries.

I first found out about Eliana’s heart problems before she was even born. We went in for a routine ultrasound, and the doctor said her heartbeat didn’t sound normal so we were sent to UNC to get a more detailed ultrasound done. We live in Knightdale, so it that is about an hour drive each way for us. The whole time we were driving there, I was so scared. I tried not to think about it, but my mind kept imagining the worst.

The doctors at UNC told me that Ellie had a ventricular septal defect (VSD), a large hole between the lower chambers of her heart. It was not until she was born though, that they found more defects: coarctation of the aorta, where the aorta is too narrow to pump enough blood, and an atrial septal defect (ASD), which is a hole in the upper chamber of the heart. I was only able to hold her for an hour after she was born, and then she had to be taken away so the doctors could take care of her and get her strong enough for surgery. It was two weeks before I could hold my new baby again; it was the longest two weeks of my life.

The day before I was going to be released from the hospital after giving birth, the nurses told me about the Ronald McDonald House of Chapel Hill. It was such a relief to know that we had somewhere to go and still be close to little Ellie. With a child in the hospital, things can change from day to day. I didn’t want to miss any of the first moments of her life, or not be there if she needed me.

Eventually they were able to repair the ASD and correct her narrow aorta with surgery, and she had open-heart surgery for the VSD. Her doctors weren’t sure if she could make it through such intense surgeries, but it was her only chance.

After her big surgery was a scary time. The night after the procedure her heart stopped beating while I was in the room, but her doctors were able to save her. Even when we were discharged from the hospital, we were not totally in the clear. After only a month at home, Eliana was back in the hospital. She had problems eating and putting on weight; she lost four pounds, and was diagnosed with failure to thrive. She went home four days later with a feeding tube and a machine that she had to be hooked up to for 20 hours a day.

Little Ellie has been through so much so far. It is so hard having a sick child and trying to balance caring for the rest of my family. I’m so thankful we were able to stay at the Ronald McDonald House, they became like our adopted family. When I was at the hospital with my daughter, but away from Matthew and Gabriel I felt so torn. But I took solace in knowing they were doing something fun with the other kids there like playing in the drum circle, craft night or being read a story, just like I would do if I was there. It helped me feel less guilty, and I could even smile knowing they were having fun and their dad was getting help too, with volunteers to make dinner and staff to support us.

When your whole life is turned upside down by a child’s illness, the only thing you have to hold on to is each other, and the Ronald McDonald House of Chapel Hill keeps you together to keep fighting. The picture above was taken at the House when we came to have Elian’s feeding tube removed. She is now a happy, healthy two year old and I am one happy Mom!