Even though it has been almost 2 years (knock on wood) since Lyra’s last hospitalization, I wanted to describe what a day at Children’s Hospital Colorado can be like, and what the people who work/volunteer there do to try and make it a tiny bit better. Why? Because Lyra is turning 3 years old, and we are trying to honor some of the people who have been on this journey with us by giving back to the hospital. The little things these people do to try and provide comfort make all the difference in the world.
It’s a bad day. In fact, it’s been a bad couple of days, but you weren’t sure where to draw the line to bring your 9 month old in. This isn’t your first time in this emergency room. You look around for familiar faces among the nursing staff and don’t notice anyone. They were expecting you. The GI department had called ahead and told them to get a room ready for your baby on the 8th floor, but it’s respiratory season and there aren’t any beds open. So, you wait in a private room in the emergency department. You’ve laid your baby on the big bed, propped on her side, as you rub her back. You would hold her, but your arms are aching from the days of rocking a sick child. You see her little belly start to convulse and you quickly grab a towel from the stack next to her to catch the green bile she is about to throw up. It’s the 3rd time she has thrown up in the last 45 minutes, and the 18th time in the last 4 or 5 hours.
The nurse happens to walk in on this scene. You smile at her and try to appear calm while your heart is breaking with helplessness. She sees your pale face, dark circles, and watery eyes. She helps you clean up and grabs a few more towels. She leaves the room, but comes back a few minutes later with a bottle of water and a couple packets of crackers for you. You realize how long it’s been since you last had something to eat or drink. She checks your baby, let’s you know they are still waiting on a room, and someone will be in to place an IV soon. You are dreading holding your baby down while the IV is placed, but looking forward to the piece of mind it will give you. With an IV they can do so much, especially now that your baby’s GI system seems to have basically shut down.
Hours later you are finally escorted into a room on the 8th floor. The transporter drops you off, then heads to the nurses station to let them know your baby is there. It’s just you and your baby in a plastic and wood room with a huge metal crib and computer monitors. You see a little bag on a chair with your baby’s name on in. In it is a teddy bear and a big red and green scarf. Its so soft and comforting. In that moment, alone with your baby and that teddy bear, you lose your composure for a second. You allow yourself to cry at the unfairness of it all, and the thoughtfulness of the gift. Everyone knows it’s a really bad day, but people are trying to make it better.
12 hours later they are still trying to figure out what is wrong with your baby. The IV is giving her plenty of fluids, but she is still throwing up 5 or 6 times an hour. At this point she hasn’t had anything in her stomach for over 24 hours. Mama and baby are exhausted. The room has started to take on a slight stench of bile from all of the soiled towels and blankets. Then, someone lightly taps on your door. She is there to clean. As she quickly moves around the room, you find out that she is from Ghana and is training to be a nurse so she can work in a mother and baby clinic back home. She gives your baby a sweet smile as she makes sure to scrub a spot of some unknowable yuck off the floor. She takes the laundry out carefully closes the door. The room smells clean and fresh. Somehow it feels a little warmer as to sit and rock your little one.
It’s about 3pm and your baby is finally sleeping comfortably. Whatever is causing the vomiting seems to be slowing down. Between the medication and the extra fluid your baby is having dripped into their veins, they obviously feel better. You want to sleep too, but you are also hungry and a little stir crazy. You have been holding your baby for what feels like days, and you just need a moment. You let the nurses know that you are heading downstairs to get some food and head out. As your walking through the main lobby, not even wanting to know what you look like, a girl walks up to you. She’s probably 14 or 15, and in her hand is a fresh cup of coffee. She’s with a group who has set up a coffee cart and they are handing out free coffee to those living in, and visiting, the hospital. The smile she gives you and little bit of comfort mean the world. You sit on a bench in a quite corner, take a deep breath, and a slow sip. For a minute you disconnect and slow down. You recharge, and head back up to your baby’s room.
These are all moments that I have had during Lyra’s seven hospital stays at Children’s Hospital Colorado. These moments -and many more- have stuck in my memory as touchstones during some of the worst days, weeks, and months of my life. I am so grateful for the humanity the people at Children’s continue to show us, when we could simply be a number, a diagnosis, or a problem. Because of all of this, our family is trying to give back and thank them for the help they have given us on this long, crazy, heartbreaking, and joyful journey.