Friends of my parent's group have asked me to share more about Caleb. Let me say now that I do not have a problem talking about him or sharing our story. I tend to keep to myself and therefore do not share his story as much because that is putting a lot of myself out there. I have used this blog some as a way to talk about him and only recently shared the address of the blog. I am not asking for pity. I'm just sharing because I've been asked.
Caleb was born on June 13, 2001. He was full term and healthy as far as we knew. He was having trouble keeping his temperature up so the hospital was keeping him in the nursery under warming lights. He hung out with us some that first day to eat and be admired. They brought him in every 3 hours during the night to eat then took him back so I could sleep -- hospital policy. I woke up at 6 and was waiting for them to bring him in. As a first time mother I was very anxious and nervous about doing it all right. No one came. I woke Greg up and asked him to go get him. He wanders out of the room. He comes back shortly with no baby. He's not sure what's going on but they say the baby isn't getting oxygen to his system and they've paged the pediatrician twice. I'm shocked and scared. I really don't understand. The nurse comes in and tries to talk to me, but can't tell me much. She's a nurse not a doctor and we all know its the doctor's job to share information. What she can tell me is that the night nurse didn't like his color and put him on an O2 sat monitor and his saturation levels were not what they should be. Dr. Jerk finally shows up, looks him over, orders some extras and decides to have him transported to the better hospital in the region. I ask Dr. Jerk some questions. His response, "I thought I already answered that." Yep. That's what he said to me. Me -- a frantic mess of a person because now Baptist Hospital is coming to GET MY BABY! So the phone calls begin. I call my mom crying. I tell her that I don't know anything but they are transporting him. Something about him not getting oxygen -- but he looks like he's breathing fine to me. (Can you tell I was clueless about how the body works?) My doctor shows up, checks me out of the hospital and gives me a hug. Tells me they'll be checking on us, but his vacation starts that weekend. The transport team brings Caleb in to see us in the incubator, looking so tiny and so sick. The transport nurse is an angel who hugs me and tells me they will take care of him. She tells me EXACTLY what to expect when we get to Baptist and asks if we are going to follow them. I tell her that no, we will be there shortly. We only lived 5 minutes from the hospital and we didn't pack much of a hospital bag -- Greg was to take care of getting what we needed. The hospital staff LOADED us down with stuff, a carseat, diaper bags, diapers, formula and rolled me to our car. We ran home, made some more phone calls, stuffed things in bags, went to grab some lunch (I couldn't eat.) and hit the road for Baptist Hospital (45 mins away). I look at the clock at one point. My baby is exactly 24 hours old and he is not with me.
We arrive at Baptist and the blessed receptionist begins working on getting us a room at the Ronald McDonald House. We are expected to be there awhile. Cell phones are not allowed even in the waiting room so I make friends with the pay phone and pay as you go phone cards. We are not allowed in the NICU yet because they are still running lines and doing tests. The cardiologist breezes in and introduces herself. She is a confident, awesome woman with a bulldog of an attitude and I immediately love her. I don't get it though. Its the oxygen -- why a cardiologist? We call a good family friend -- a pediatric pulmonologist from Duke. I explain as much as I possibly can (t'ain't much) and he helps me to begin to understand. He asks who the cardiologist is, Dr. Raines, I tell him. He says, "Good, I've worked with her." Sometime later, Dr. Raines and her entourage (its a teaching hospital) usher us into a family room. I can still see those walls and that decor. She draws a simplified picture of the heart and explains what is going on. I still don't get it, but just nod my way through it. I know there will be time for understanding later. He has pulmonary atresia with a vsd. Pulmonary atresia where the pulmonary valve either doesn't form correctly or fails to open. A VSD is a hole between the lower 2 chambers of the heart. Caleb desperately needs this hole because otherwise all the blood would back up in the right side of his heart and go nowhere -- he'd not have made it this long. Because of the hole, the blood escape into the left side and is pumped through the body. BUT, since he doesn't have a pulmonary artery, this blood hasn't had a chance to make it through his lungs and get oxygen. God is wacky and weird and made up for this by giving him 100s of tiny little vessels from his heart to the lungs. Not that this was much use, but it was getting him SOME oxygenated blood.
They finally let us in to see him. Oh, it felt so good to finally SEE this beautiful baby. Caleb's primary nurse is Julie. She becomes our best friend for this endeavor. (More on her later). Caleb has wires and needles running from everywhere. (Okay, I'm not going to sit here and give you every detail of the 10 days there -- maybe some other time).
Jumping ahead -- he gets surgery at 6 days old. The surgeon has had a rough day of it and Caleb's surgery didn't make it any better. All the aspects of his surgery went well. But there wasn't much that could be done. His vessels are too small. Think of this: your heart is the size of your fist. Caleb's heart was the size of his fist. (A large grape maybe?) His vessels need to be the size of a piece of fettuccine. They were thin spaghetti size. Even the most talented seamstress can't sew anything to a tube that size. The hole from the needle would be bigger than the space inside the tube. (Remember -- this perspective is all MANY years later -- during all this I just wanted to know WHY! and FIX IT!)
So Caleb comes home at 10 days old. My beautiful baby boy -- blond haired, blue eyed. He eats great, he's growing a tad slow, but them maybe thats my genetics. He needs to stay healthy because it will take him more to fight off infection. Doctor appointments come and go. Everything looks THE SAME. No worse -- yeah. No better.
Caleb was what you call a blue baby. Think about how you look when you are cold. Funny skin color, blue lips. Really cold? Blue finger and toenails? He is basically oxygen deprived. He breaths very hard but he is SO determined. He crawls -- FAST. But then he has to stop to pant. He only walked 3 steps unassisted. For me, on Christmas, just a month before he died. No on else saw. I cry for that a lot. Oh the joy on his face. Its like he knew I NEEDED it.
The weekend Caleb died, he'd had croup. We'd been in the hospital but I told family that no one needed to come out, it was just croup and we'd be fine. I went to work on Monday and Daddy stayed home with him. Since it was MLK Day many of my kids weren't available. I came home for lunch, bumped an appointment up, said my good-byes to Greg and Caleb (who pushed me away because he was watching Sesame Street). I told Greg he need to get Caleb down for a nap and I'd be back in an hour. That was my last time with my boy. I am racked with guilt still over the night before. It was our first night home from the hospital and I had slept the previous night in the crib like thing with the croup tent. I was tired, I was not in best mommy mode and I didn't give him a great bath like usual. It was just a quick one and then into bed. I don't remember if he slept with us. He probably did. I don't know.
Caleb developed some standard blood clots, but because of his anatomy could not pass through his system. He started crying when Greg put him down for a nap. He had a seizure, Greg rushed him to the emergency where he took his last breath. Our pediatrician still had red eyes when I got to the hospital. I'd left my phone in the truck while I was working with a child (who spoke to me the first time during his session) so I'd missed the calls from the emergency room. Not that I could have gotten there in time. I held him again -- in shock, disbelief and sadness. The day had come. We knew it would. He was gone.
5 years ago