On May 17th 2018, we went to bed like any other night not knowing what was to come. Our son Christopher and his girlfriend Amber were expecting twins in August, 2 baby girls. Chris came and woke us up as he had just gotten home from work and Amber was staying the night with her Aunt’s in Massena. He woke us up to tell us that Amber was in labor and in the hospital. Our hearts sank as they were 3 months early (26 weeks)!! Lillianna came first just before midnight on the 17th and Bailey came shortly after midnight on the 18th. Both were a little over 2lbs and Bailey was not doing well at all. While waiting for Dartmouth Life Flight to come and get them, Bailey coded twice. This is not a sight you want to see, poor little baby!! Our precious little babies were shipped out via helicopter to the University of Vermont Children’s Hospital in Burlington, VT. First our little Lillianna and once they dropped her off, they came back for Bailey. I thought they would take Bailey first as she was the sickest, but I think they thought they could save Lillianna, (we are not sure of this). Our precious Bailey was with us for 2 days. We had both girls baptized as soon as possible. Shortly after her little body just shut down and she passed away in the arms of her Mommy and Daddy. This was a horrible day for our family!! However, we had to be strong for Lillianna. She was still fighting, and we would be right there fighting for her too!! She was in the NICU for 3 months, endured many procedures and multiple surgeries on her brain. She had a grade 4 brain bleed like her sister but not quite as bad. It did cause quite a bit of damage and she developed meningitis (involving 2 serious bugs) from the first drain they put into her brain. She had developed hydrocephalus from the brain bleed and fluid was building up and had nowhere to go so they had to drain it or the pressure would kill her. Also, her lungs were not good, she couldn’t maintain her levels. She had a very long road ahead of her. We had many care meetings and you could see it on the faces of the docs and nurses and the infectious disease doc. They said that a much older child would have a hard time surviving these serious infections and she was 3 months premature. Her situation was serious. Well, we learned fast that Lillianna would be proving them wrong!! She fought back and let them know that she wouldn’t be counted out!! She pulled through her infections, at the end of the 3 months she was removed from oxygen, she started to eat on her own. She was surviving! They said that it would be a roller coaster ride and they were not wrong! We had many times that our hearts were broken and fear that Lillianna would join her sister. We had so much to worry about!
One thing we didn’t have to worry about was Chris and Amber and where they would be staying, how they would be getting meals… My husband and I could not be there every day with them. Chris was off from work as he works at a local college and they were on break…We live 3.5 hours away. This is where we were blessed to have found the Ronald McDonald House in Burlington. The staff was so welcoming to our kids! So understanding of their situation, there for them if they needed someone to talk to!! The house itself is so welcoming, a beautiful home to come to at the end of a trying day! Always a homecooked meal or a place to cook your own meal or just to store food of your own if you want to. I can’t even put into words the relief we felt that the kids had a place to be safe. It was hard to leave and go home but knowing they were safe and surrounded by loving people that would be there for them if we couldn’t, gave us so much comfort!!! These people are our heroes and we can’t thank them enough for all they do!! Oh, and Mike is the absolute best!! Today, Lillianna is almost 9 months old and just doing great; she has had to have a couple more surgeries and has had a couple of bad colds, but she is pleasantly surprising all her docs and along with us, they feel she is a miracle. Our little miracle that could not have made it without everyone involved in her care, including the Ronald McDonald House family that were involved in her Mommy and Daddy’s care!! Thank you Thank you Thank you for all that you do for families in need! Our hearts are with you always! When life calms down a little around here, you can bet we will be back to pay it forward!!
Karen and Robert Peck and Lillianna’s parents Christopher Peck and Amber Duprey