Mother to Corbin Walker
February 20, 2011- May 17, 2011
Crawley, West Virginia
July 4th, 2010-I find out I’m pregnant. Again. Only three months after I gave birth to my first son. When I tell my best friend, she doesn’t believe me. “No you’re not!”
My pregnancy is uneventful. His measurements are “normal”, my weight gain is “normal”, there is no reason to suspect anything is wrong. I do notice the baby isn’t kicking as much as my first son, Colt. I also can feel that this baby is smaller. But nothing other bothers me.
February 19th.2011-We are celebrating Colt’s one year birthday early. His birthday is the 21st but his little brother, we decided to name Corbin, is due the 23rd. The birthday party is chaotic. There are so many people there. My husband has such a large family that word spread and everyone showed up. I am 9 months pregnant, about to pop, and running around like a crazy person.
I guess the excitement got to me, because the next morning in the shower, my water breaks. I remembering thinking “did my water just break?” but I shrugged it off. Two hours later, when I am still leaking fluid, I call the hospital and they tell me to come in. I plan on having a vaginal birth. I had a c-section with my first and I wanted to experience it the “natural” way. When I get there, the doctor checks my cervix and tells me it is “in my tonsils”. She tells me I can wait to progress, possibly another long labor like my first, or I can go the easy way and have a c-section. She tells me I fought like a champ through 21 hours of labor without meds the first time, so there is no shame in having another c-section.
I agree, so we proceed. It was a weird feeling to go into a hospital expecting a long, painful labor, only to have a c-section and be able to hold your child within a couple of hours.
The procedure goes smoothly. I’m a little nauseous, but the pain isn’t as bad as my first time. I get to hold my baby only an hour or two after the surgery. A nurse rolls him in, roughly telling me “You need to feed him, he’s hungry and won’t stop screaming”. I remember thinking “You should not be a nurse”.
He’s red, wrinkly, and so small. I’m shocked by how small. I ask his weight: 6 pounds, 14 ounces. To give some perspective: my first son was 9 pounds, 4 ounces. I was expecting him to be the same, if not bigger. They tell me it’s nothing to worry about.
Family and friends come and go, visiting. I nap when I can. We send the baby to the nursery at night so my husband and I can sleep. They bring him in every couple of hours to nurse.
I notice Corbin is breathing a little heavy. I ask about it, they tell me “it’s normal”. I tell them my first son never breathed like that. I’m worried.
The next day, the pediatrician comes in to tell us how the baby’s tests went.
“ I can hear a murmur”.
I’m speechless. Shocked. Terrified. Worried.
He tells us Corbin’s blood pressure is a little high and they can’t discharge him till it goes back down. He has scheduled Corbin for an echocardiogram on Wednesday, just to be sure.
The next day, the pediatrician comes back to tell us he has talked to a cardiologist. Corbin’s blood pressure has come down, so they don’t feel like he should stay at the hospital. He still does want him to have an echo just in case.
I only have to wait on my OB to clear me, then we all head home.
The night is long. Corbin stays up late then sleeps in late. It’s hard to transition to his sleep schedule. But I am so happy to be breast-feeding. I do have to pump a little because he doesn’t always latch on right and I’m getting very sore.
The next morning my husband and I load up the baby and head to the cardiology appointment. I am so nervous. I have a bad feeling about this. Cody is calm ,like always. But I cannot shake the feeling that this is more than just a murmur.
We arrive at the ultrasound office. I have to nurse Corbin to calm him down before we can start. The technician is silent. Cody asks “So do you see the murmur?”
She doesn’t answer.
Another long 5 minutes later. “I see holes.”
Cody and I only stare at each other. I start to tear up. “What does that mean?”
She tells us she can’t answer until she talks to the cardiologist. She calls him. We wait in silence.
The cardiologist tells us he can only say when he sees the echo for himself. We are scheduled for another echo that Friday.
We go home. I call my mom on the way.
“He has holes in his heart” I say, crying.
We call other family members, feeling helpless that we have no more information.
The night is long. We are worried, our minds racing of possible problems.The next day, we have to take Corbin back to the pediatrician for blood tests. They tell us his jaundice is still very high, so we need to get it tested again the next day. I get my staples from my C-section taken out.
That evening, members from our church come to our house to anoint the baby. I don’t really understand what it means, but I cry. I’m so scared and worried for my baby. My emotions are all over the place.
The next morning, my mom and I load up the baby and head back to the ultrasound office for another echo. It’s raining. And cold.The cardiologist is there. He runs the echo himself this time. He and the technician talk to each other quietly. The tech looks worried.I tell my mom I just don’t want to hear anything about his aorta. I don’t know a lot about cardiology, but I know the aorta is a bad thing.Swear to God, the cardiologist turns to me and says “He has a narrow aorta.” And that’s not all.
He has four holes in his heart. Two between the upper chambers, and two between the lower chambers. He tells us his aorta is narrow and interrupted. We need to take him to the emergency room immediately. The tech tells us to harass the nurses till they help us. She says if they give us a hard time to tell them to call her and she will explain the situation. The cardiologist tells us that they need to put him on medication to keep his aorta from closing. He tells us it could happen at any time. If we don’t…well, he could die.
I’m in tears. I can’t speak. The tech tells me she’s sorry. Which makes me cry harder. I grab the baby bag and leave the office. I walk straight out the door, still bawling, to the car. I leave my mom to get the baby. I can’t breathe.
I can’t stop my mind from racing. From imagining horrible and awful situations. I am a wreck.
The hospital is literally walking distance, but we drive. We have to wait on triage but I cannot sit still. My mom is calm, but I know she is as worried as me. I keep bugging the receptionist behind the glass but she doesn’t seem to care. I pace. I go outside to cry and pace some more. I park the car. When I get back, the baby has been taken back to the ER.
They are trying to get an IV in. I can’t watch. He is crying and crying. It breaks my heart. The nurses only keep adding wires and tubes. They take an EKG and a xray.
I can’t help but worry about how we are going to pay for it.
They have called Ruby Memorial to come pick up Corbin. They are going to take him to the children’s hospital. The ambulance is still 4 hours away. We have a long time to wait.
I finally call my husband. I can’t hold back the tears as I tell him what is going on. Our son needs surgery. He has to go 4 hours away to the children’s hospital. He handles the news better than I thought. Maybe it was just shock. He gets ready and heads to the hospital to trade places with my mom.
The transport teams arrives over an hour after my husband does. They are professional and friendly. They take a while getting Corbin ready for transport. When they are done, we sign some papers and are told we can go ahead. There isn’t room in the ambulance for us.
The drive is long and quiet. We don’t really know what to say.
When we arrive in Morgantown its dark, about 10pm. We don’t have a GPS so it takes us about an hour to find a hotel with a vacancy. Turns out Snoop Dog is in town so all the hotels are booked. It’s one am before we see our newborn.
The NICU is quiet and the lights are low. A doctor is running an echo on Corbin. She motions us over and explains that she sees the holes and his interrupted aorta. She says it is half the size it should be. She can’t answer our questions, it is all up to the pediatric cardiothoracic surgeon.
We head back to the hotel to get some sleep. The next day I call the Ronald McDonald house to ask if they have a room. They don’t, but they tell me we can come over for food, showers, and laundry if we need. We should also check back that afternoon to see if they have a vacancy. We visit the baby (no news) then head to the McDonald house to check about a room.
Lucky for us they have an opening so we “move in”. We go out to dinner. The guilt is crushing me every time I laugh. How can I have fun at a time like this? What is wrong with me? I can’t stand myself.
The next morning I have a split second where I forget what happened. One tiny split second of happiness. Then it all comes crashing down, like a slap in the face, like a stab in the heart: your son has to have heart surgery. My heart breaks all over again.
Two days later we finally talk to the heart surgeon. I don’t even get a word out before he holds up his hand and says “I can’t answer any of your questions.” I won’t know until we are looking at his heart to tell exactly what we need to do.” He tells us we can only go one day at a time.
The day of the surgery I am calm. I have this feeling that everything will be ok. We head to the NICU to hold Corbin before surgery. He still had a lot of wires but he slept so soundly for the two hours we were there. The nurses were laughing at him as he was passed out, one arm hanging out to the side. They told me there’s nothing better than mama.
His surgery takes 7 hours. I’m immediately nervous waiting for news. They tell me he pulled through just fine. They had to completely reconstruct his aorta and while they were in there, they found some arteries that are thicker than they should be. They tell me he could have Williams Syndrome. I’m stunned. I wasn’t expecting something else to be wrong! They will run a test and let us know.
We go back to see him. There are dozens of machines, wires, tubes, and beeping medicine dispenser. I count 15 different medications. Its like the deck of a space ship. Corbin is sedated, paralyzed, and doped up to the max. We can’t hold him until his chest is closed. They leave it open for three days in case the heart swells. He looks rough but he is holding steady.
His recovery goes well. He continued to make good progress through the next month. He came off medications, tubes were removed, and finally he was down to a nasal cannula with a low dose of oxygen and was starting to bottle feed. We were really optimistic that he was going to be coming home soon.
Then he got worse. Overnight his numbers floored and they put him back on ICU status. They couldn’t understand why he had gotten worse so quickly.
We were back to square one.He fights for his live for the next month. His numbers go up then go back down. He comes down on his oxygen only to “fail” and they have to raise the pressure back up. The continually try to take him off the ventilator but never succeed.
After a month of being on the ventilator and TPN (nutrients through an IV), his hair starts to fall out. This scares the breath right out of me. I’m terrified. This is not a good sign. They tell me that after so long, TPN can start to kill a babies liver. His hair falling out is a sign that his body is getting sicker.
The doctors don’t know what to do. “We’re not giving up, but we don’t know what to do to make him better”. They’re trying not to make it worse but staying in the hospital for so long is slowly killing him. We don’t know what to do.
The surgeon says he will try a different surgery. It takes him weeks to make up his mind which kind. During that time, Corbin seems to get better. His numbers come up, his infection clears up, and he looks better than he has since he was born. I’m optimistic yet nervous. I don’t want to make the wrong decision. Maybe if we wait he will get better on his own? The doctor tells me he won’t go home without this surgery. So we sign the papers. He will have his third heart surgery.
This time I’m very nervous. Every time a nurse or doctor walks by the waiting room windows, my heart jumps. I don’t want to see anyone for hours. If they come in early that means something is wrong. Finally, they come to see me. They tell me they can’t get him off the bypass machine. Due to his heart problems his is not applicable for life support. If they can’t get him off the bypass, he will die. It takes hours. Finally they update me again. He is off the bypass and back in the PICU. They tell me it will be another hour till we can see him.
He looks terrible. You can tell this surgery was really rough on him. He’s so swollen and weak. His numbers aren’t great but they are stable. He has a few dips but makes it through the night.
The next day I get a phone call. “Things haven’t been going too good for the past hour. You need to come over as soon as possible. We are giving him CPR right now.”
I don’t’ want to tell my husband. I can barely get the words out. We don’t know what to say, we’re in shock. We really never thought this would happen.
When we reach the PICU there is half a dozen people standing by his room just watching. I can hear the commotion. I try to read the nurses face but I can’t tell. Is he head or are they still trying? It was the most terrifying second of my life. Walking down that hall was like walking through concrete. I didn’t want to see. I didn’t want to know what was happening. I just wanted everything to disappear and for us all to be home together, holding Corbin safe and sound.
The doctor has his hand on Corbin’s heart, giving compressions. There are nurses everywhere shouting numbers, running for more epinephrine. I don’t know where to look. The doctor gives me a hug with one arm and tells me that Corbin’s heart stopped and they are trying to restart it. We go sit in the back of the room.
Weeks earlier they had asked us what we wanted to do in the event his heart stopped. We took a while to decide but we told them they must do everything they can.
So they did. They tried and tried for almost a half hour to bring him back. But he was gone. I think the moment his heart stopped is when he got his wings. I hope he wasn’t there as they pushed and pushed on his heart. It was awful to watch. The nurse told me to go hold his hand. It was so cold. I just cried, knowing he wasn’t there anymore.
My baby was dead.
Corbin Walker was born February 20th, 2011. He underwent three heart surgeries, one heart cath, dozens of echos, and hundreds of x-rays. The amount of pain, needles, and scars he suffered through is heart breaking. The only comfort I get is knowing that he isn’t in pain anymore. He fought for three months against his disease. He passed away around 9:15 am May 17th, 2011. He was my Peanut and I miss him terribly.
Not a day goes by that I don’t think about him. I’m in tears right now trying to write this. I only hope his story will help someone one day. I hope his strength and fighting spirit will inspire someone. He is an amazing baby and I love him dearly.
I miss you Peanut.
Ruth blogs at http://thecorbinstory.blogspot.com
You can contact her at firstname.lastname@example.org