The Corbin Story: continued

March 2nd


Today I get to see my first born. :D
Today I get to hold my toddler. :D
Today I get to spend time with my whole family. :D
But first we have to go to rounds.

Hubby and I are sitting by the window when the doctors arrive. I'm looking forward to not only hearing what they have to say, but learning everyone's names. I have only met Dr. G, the Pediatric Cardiothoracic Surgeon (or Baby Heart Doctor as my dad says), and Dr. R, the Pediatric Cardiothoracic Anesthesiologist (Or Mr. Sleepy :P); so I'm eager to meet everyone else who will be working on my son.
I did not expect there to be a dozen people in my son's room.
Geez...they are really are on top of things here! There are people from Nutrition, Respiration, Pediatrics, Cardiology, Pharmacy, and God knows where else.
It's hard to read name tags from across the room.
I am keeping a journal so I can take notes during rounds and conversations with doctors. God knows I would never be able to remember all these medical terms on my own.
Dr. Rh, the Ped. Cardiologist, looks like Santa. He is short and round with a long beard that he likes to stroke when he is in a deep thought. Then there is Dr. M, his Intensivist (specializes in critically ill patients), Julie the Ped. Nurse Practitioner, and Dr. P, another Ped. Cardiologist.
The doctors ramble off all his numbers and stats for the night, what kind of meds he is on, and their plan for the day.
I write down quotes so I can pass them along. But only the good ones.
"ventilates great"
"stats are good for a mixer" (mixer meaning that the two holes in his heart are mixing the blood)
"better today then when he came in"
Rounds are fun! (only when the news is good of course)

Not too long after rounds my father-in-law, his girlfriend, and Monkey arrive to visit. My parents arrive soon after that.
We all gather in the PICU waiting room. I can't wait to hold my baby, but when I walk in all he does is grin at me then walk away! I had to chase him down just to get a hug out of him. He was obviously happy to see me but he was more interested in checking out the room and the dirty toys tossed in a corner.
Hubby takes his dad and his girlfriend to see Peanut, and when he comes back he tells me there are people waiting for me in the room.
I go back to the room and proceed to fill out paperwork on two programs that Peanut qualifies for and his Social Security paperwork. Turns out he qualifies, at ten days old, for a monthly check!
Awesome.

The rest of the day, we all hang out together, eating and talking. I try to spend as much quality time with Monkey as I can. He's not spending the night; he, my FIL and his girlfriend, and Hubby will all be going back home tonight. There isn't enough room in our little room for all of us to stay. Although people are allowed to, there is no way we would all fit. My parents are going to stay till Hubby is off of work again.
Hubby and I go back to the hospital before he has to leave. It's hard on him. He's almost in tears as he kisses his newborn one last time. We say our goodbyes and I head back to the house.

Over the next two days. The routine is the same. I set my alarm during the night to pump. I have to keep it up so that my supply doesn't dry up. My baby needs breast milk more then ever and I will do whatever I need to to supply him with that. I just wish they would let me nurse but I know that will not be for a very long time.
Mornings are rounds. His progress is good. They are slowly weaning medications and balancing oxygen levels. We are watching his urine output like hound dogs. The more he pees, the better he is doing. So they are giving him a water pill called Lasix. Although it's not a pill, its a medication given through the IV that treats water retention in heart patients.

I meticulously keep track and write down what the doctors are saying. I don't want to miss anything and I certainly don't want to be in the dark. I make sure to look up medical terms and what kinds of medications he is on. I write down Dr's names, what they do, their department. The doctors have noticed my note taking and are starting to slow down to explain things so that I can write it down.
The doctors and nurses here are fantastic and I have yet to run into one rude person.

By March 4th, his oxygen levels are just right and his stats are where the doctors want them to be.
They are ready to go back in his chest and tighten his pulmonary clamp.
They were worried about oxygen levels because it has to do with the pressure in his heart and lungs. If the pressure is too high, they don't want to tighten the clamp and make it higher. Then he will go into pumlmonary hypertension, which could cause more problems. But the pressure also can't be too low.

At 2:30 they are ready to operate. This go around, I'm very nervous. I know I shouldn't be. This operation is much less extensive then the last. All they are doing is tightening a clamp then closing his chest. But I feel so nervous...

About two hours later, they are finished. They tell me they couldn't tighten the clamp as much as they wanted but it is good enough. Dr. G, the cardiologist, tells me if he has to back in and tighten it some more, he will. But right now, it is good enough. He doesn't want to put the baby at risk and "good enough" is good enough for him.

I remain nervous because when I go in to see him some time later, his heart rate is really funky. It will be beating along like normal in the 140s, then it will drop to the 80s. Plus his blood pressure is really high.
Uh oh.
The nurse starts hovering over him. Then she calls in a doctor to consult. I find out that his heart is beating an extra beat. The electricity from the upper half of his heart is hitting the lower half, but the lower half hasn't recovered from the last heart beat yet. So it doesn't communicate back to the upper half and it makes his heart beat look half the speed on the monitor; but in reality it isn't. Dr. P explains this is completely normal and will get better as time goes on.

The next couple days, he is progressing like a champ. Of course there are times when a number or his chest tube drainage isn't where they want it to be. But they fix it and he keeps chugging along! He is one amazing little baby and I can't wait to take him home. :)

*The updates since his chest has been closed are posted on his website: http://caringbridge.org/visit/thecorbinstory

The Corbin Story: Surgery Day

I wake, feeling very calm.
"That's weird." I think to myself.
I know I shouldn't be. I should be biting my nails to the bone, pulling my hair out, close to sick, kind of nervous. My son is having heart surgery today. His chest will be opened, his aorta rebuilt, and he is only 10 days old.
Instead, I am filled with a sense of calm. An aura of "everything will be ok." I know he will make it through. I know, in my heart, he is going to be just fine.

If you have never prayed, you have no idea how much it does work. The power of prayer is amazing. I knew my son would pull through surgery and I know it was because God had heard my prayers. God had sent my calm mood on what should be the most stressful day of my life. It's surreal sitting there, knowing your newborn in laying on a table with his chest open, and not even being worried. You know you should be, but you can't even make yourself worry. You know it is due to God and all you can do is thank him, over and over.

Before the surgery, Hubby and I came over to the NICU at 6:30 so we would be able to hold Peanut one last time. He still had a breathing tube and dozens of wires, but as long as we sat close to his bed, we could hold him. He had come off of isolation the day before so we didn't have to wear gowns.
It was heavenly holding my baby. Once I got him situated, he was in bliss. He slept so soundly for the two hours I got to hold him; the nurses were laughing at him. He was sprawled out with one arm hanging off to the side and was snoring. They told me he hadn't been sleeping well the past two days and he was bound to be exhausted.
No one can do it like mama.
I loved it, I could have sat there all day staring at him. He was so peaceful, breathing calmly, snoring slightly. It was perfect.
But of course, everything must come to an end. The anesthesiologist came in at 8:15 to take the baby down to the OR. So I had to put him back in his little bed, watch as they moved wires and computers, then give him one last kiss before they rolled him away.
There were no tears, just love.

Waiting wasn't that hard. I was expecting at least 8 hours, if not 10. If it was sooner, I would have been surprised. We didn't do much, everyone had their computer or ipod to play with. My parents and I chatted while Hubby slept.
A long 7 hours later, we got the word that they were done, he made it!! It was then, I got a little nervous. I wanted to know if his ventricle was too small or not. That was the news that would make or break my day. They tell us it will still be at least two hours before we can see Peanut. They have to clean him up, bring him to the PICU, then get him settled in his room.

While we were waiting, we met a family who had gone through a similar experience. Their son, Scotty, had heart surgery when he was 11 months old and has lived, with the occasional close call, to a healthy 25 years old. It was very encouraging to hear a story where you can relate. His heart defects were much more extensive along with multiple complications in other organs. His doctor is Dr. G as well, so we felt confident that Peanut has a very good chance at making it through the next couple weeks.

A surgeon, Tammy, comes in to tell us how the surgery went. She explains that once they had Peanut's chest open, they realized they would have to completely reconstruct his aorta. It was way too narrow. So they used a graft and some sort of tube to open it and reconstruct it to the size it should be. She added that they found some arteries that were much thicker then they should be. She said that it could be a sign of Williams Syndrome.
My heart drops. "Uh, oh." I wasn't expecting that.
It is a genetic disorder that presents at birth. It is associated with a narrow aorta and thickened arteries.
You can read more about it here.
She tells us they will test for it, but she doesn't know enough to tell us if she thinks he has it. She goes on to say they could not tighten the pulmonary clamp like they had planned. They will leave it loose for now and try to tighten it in a couple days, before they close his chest.
Dr. G comes in, not much later, to talk about the surgery. He says Peanut's ventricle isn't too small, but he's also not sure if it's big enough. He says it is right on the line and they will have to see how he does. We ask about the thick arteries, and all he says is it's "curious." He won't go much into it, he only repeats that it is "curious", but also doesn't seem that worried about it.

A nurse steps in to tell us Peanut is ready and we can come back. I have been warned by the NICU nurses that it will be "breathtaking" how bad Peanut will look. So I'm expecting, I don't know what, but I'm expecting to be floored.
When I walk in, I'm like "Hey, it's not that bad!" He is hooked up to probably over twenty different machines but he doesn't look that bad. The amount of equipment is more overwhelming then his physical condition.

Starting from the right:
-The black moniter is keeping track of all his vitals. He has two moniters, the other is on the upper left, facing his bed.
-The pole with the white box looking things are medicine dispensers. They are automatic so the nurses only have to program them then leave them. There are FIFTEEN (15)!! There are four poles holding all the medicines; sedatives, pain relievers, blood pressure medicines, fluids, and nutrition.
-The monitor with the blue plastic tubes coming out is his controlling his breathing tube.

-The machine with the blue tank is his oxygen line.
Then of course, there are the huge lights over his bed. Those are for when the docs have to come back in and close his chest. This room is specifically for heart surgery patients. This way, they can come in and operate without having to take the baby all the way down to the OR.
Crazy huh?

Peanut is completely sedated. The doctor told us pain alone can kill a baby, so they are extra careful to make sure his is comfortable. The skin over his chest is pulled back to reveal his chest and heart and you can see his heart beating through the dressing. Although it is kinda gross, it's fascinating at the same time. I apologize if this is too much for you, but here it is:

I, surprisingly, don't start crying. I talk to him, telling him "mommy's here", hoping he can hear me. He is really swollen and my first thought is: "He looks just like Monkey!" Which makes me smile, thinking that maybe when they get older, they will look the same.
Hubby goes back to bring my mom and dad in. They give Peanut kisses and tell him they love him. I can't decide if I'm going to stay the night or not. My mommy half doesn't want to leave him, in case he gets worse during the night, but my other half is exhausted and just wants to go to bed.
I go up to his nurse, MJ, and ask her what to do. I can barely get the words out, I start cying. "What should I do?" I swear she tears up too which makes me cry harder.
"I can't tell you what to do mommy, but I will tell you these lights will stay on all night. There will be beeping and alarms at all hours. You need your rest too, to make milk. You have to eat and sleep so that you will be strong enough to take care of your baby. It's up to you mom, but that's what I think."
I can only nod. I give my baby one last kiss for the night, and we all head back to the McDonald house. In the lobby, Mom asks why I would want to stay.
Dad says "Because she wants to be there if he dies."
"Husband! Don't say that!" My mom exclaims.
"He's right mom, as bad as it sounds, that's why." I tell her, tearing up again. I feel guilty for leaving but I know MJ is right. I wouldn't sleep a wink if I stayed in his room, then what good would I be? He is in the best care possible, MJ is a remarkable nurse, and they will call me if anything happens.

Back at the house, Hubby and I get to our room. He sits on the bed and pulls me toward him.
We only look at each other, burst into big grins, and say:
"He made it!!"

Thanks

We have just reached two weeks, here in Morgantown. It doesn't sound like a long time, but it feels like years. I feel like I've been here forever and will never be able to leave. Some days, I'm really depressed; snapping at my husband, ignoring my first born, and over all being a total black hole of depressed anger.

Other days, I feel great. My son is recovering well, he looks good, I feel good, and I'm happy. I am smiling and talking to nurses, laughing, and feeling totally uplifted by prayer. 

But Depression is always sitting in the back of my mind, ready to eat up all my happiness and replace it with stinking, nasty, sad thoughts that will bring me down the whole day. Depression and Anger are always following me around. Happiness is here too, but he doesn't like to mess with Anger...they can't be in the same room together.

This morning, Depression was king. If you couldn't see the stormy black cloud of never-ending sadness around my head, you could definitely see it in my eyes. Staring blankly ahead...consumed by sad thoughts, I was a sight. But then I wrote down how I felt...and it all went away. Happiness returned, relieved I had finally listened to my instincts and had put Depression back behind locked doors. 

This is why I blog.

This is why I share with you how I am feeling. I'm not going to put on here what exactly I was feeling this morning because I don't feel that way anymore. But I do want to share why I blog.

It helps.

Which is the tiniest, yet greatest treatment for me right now. To have something to do that gets all my thoughts out of my head, to keep Depression and Anger at bay, I write. They can't feed on my negative thoughts if those thoughts aren't in my head anymore.

So thank you for listening.

Even if I never get a response back...this helps.

The Corbin Story: continued

Sunday: 27th


It's a wonder of God I'm able to supply my baby with breastmilk. It didn't work with my first born; I just could not get the hang of it. So this time around, I ask questions and make sure I know what I'm doing. It just requires me to pump every three hours.
And let me tell you, it turns into a chore really fast. I have to set my alarm every night so that I can get up and pump. It makes the nights seem a whole lot shorter.

When we get to the hospital, the nurse tells us that over night, Peanut decided he did not need his breathing tube anymore and pulled it right out! They were planning on removing it soon anyway, but my baby was done messing around with that thing and did the job himself.
That's my boy!
When you are staying at the McDonald house, the doctors ask you to be around for rounds every morning since you are staying so close. So we wait and wait....About two hours later, they finally show up and go over his numbers. He is doing good, vitals and holding up, and they mention surgery may be Tuesday. Still no date yet though. Only speculation. Oh well...more waiting.

We go out to lunch then to Walmart to buy a GPS. Since Hubby will be going back to work soon and I will be left here with mom, I feel better having something to help us get around. Knowing myself and my mother, we would take one wrong turn and end up in Ohio before you could say "wrong turn."

When we get back to the hospital, they greet us with great news. Peanut will NOT have to have open heart surgery. YAY! I was so worried. Instead they will go in to bridge his aorta then wait two months to go back in and patch the holes.
They were going to put a PIC line in, which is a more permanent type of IV. That way they won't have to continually stick him for blood. They couldn't get it in so instead they put an IV in his head. I cringe every time they say IV *ugh*. They tell me that he took it like a champ though! He didn't even cry.
That's my boy!

Monday: 28th


As I am pouring my coffee in the kitchen of the McDonald house, I hear behind me the television. It's on the weather channel and apparently, there are tornado warnings for the area!
"Wha? We don't get tornadoes in the mountains?!"
Then I remember.
We're not in the mountains anymore. We are a so close up to Ohio, I could spit across the state line. Damn you flat country!

Rounds go well. His vitals are good, but his jaundice is getting worse so they decide to add another blue light. We finally get to talk to the Cardiothorasic Surgeon. He is short man with long, thin fingers. He kind of looks like the Monopoly man, hair and all! He wears small round glasses at the end of his nose and talks quietly. The nurses have already told us things about him, like how if you don't ask him a question he will just walk out. He is so concentrated and so smart, he doesn't waste time on niceties or chit chat. If you ask, he will answer to his best knowledge. But if you don't, he will just walk away. He talks very quietly and is know to mumble but he is amazing in the operating room.
This only makes me more nervous. I don't want to forget anything.
Hubby tells me later, he hopes he didn't shake the docs hand too hard, "that's his operating hand!"
We are bursting with questions, but he stops us and says:
"I see you have a list of questions, but I can't answer them. We have to get through this surgery, then everything else depends on how he recovers. We can't plan a month ahead, we can only go one day at a time."
Well crap.
That wasn't what I wanted to hear but I know he is the best there is around here and I have to trust him. He goes on to tell us that they are planning to bridge his aorta then put a clamp on his pulmonary artery to restrict blood flow to his lungs. There is too much blood flowing and it is causing fluid to build up. He says he saw on the echo that Peanut's ventricle is small. He emphasizes that he won't know if it is TOO small until he is looking at Peanut's heart. If it is, then this will turn into a whole other operation. If it is too small, then Peanut will have to live off of one ventricle and his chances of dying on the table go up 20%.
When he says "die", my heart drops.
I know there are risks, I just didn't think the chances were that high. He says if he has two good sized ventricles, then his chances of dying are 10-15%. But if he only has one good one, then his chances of dying are 25-30% and his life span will be till around 30.
At this point I start crying. But it doesn't faze the doctor. He touches my hand, once and very lightly, then continues on explaining. I stop thinking. All I hear is: death. It's too much. I can't hold it in and the tears flow.
The nurse brings me tissues as I try to calm myself down. Hubby only gives me a look of understanding. I try to get my concentration back on what the doctor is saying. He is saying that he can't tell us how long the surgery will last or when he will have to have his next surgery. EVERYTHING depends on what that ventricle looks like.

In a daze, we go back to the house to update family. Hubby and I are on the porch, talking, when we get a phone call from the hospital. The anesthesiologist has arrived and is available for questions. We hurry over and head to the NICU.
The anesthesiologist is also a quiet talker. But he is much more talkative then Dr. G, the cardiologist. Hubby asks him what the risks are, and he answers but doesn't really answer the question. You can tell he is very educated and knows exactly what he is talking about but it is hard to understand. Another genius.
Although there is a lack of answered questions, we are comforted by the fact that these doctors are one of the best on the East Coast. Kids get sent from all around to this hospital just for these doctors. I was told earlier, by another mother, that once your child sees Dr. G. He will never see another doctor in his life. As long as Dr. G is working, then Peanut will be coming here to see him. There was a 65 year old patient of Dr. G's in the PICU the other day. Tell me THAT'S not impressive.

My parents arrive soon after we get back to the McDonald house. It is great to see my mother. She knows how I am, and how I like to be comforted. No one can do it like mama.
We all go out to dinner to talk. When we are seated, Dad ask's me a question about the surgery.
"So, what did the doctor say?"
I can't answer him, I'm trying not to cry. I ask "Can we please not talk about surgery tonight? We will talk about it later, but not at dinner?"
And so we don't.
We talk about prison (Hubby's favorite subject) and my brother, and college, and memories.
And I laugh.

Day Seven

Saturday: 26th


After visiting our baby, we head back to our hotel.
The whole place smells like weed, but that's to be expected when Snoop Dog is in town. Plus I'm pretty sure he is staying in the same hotel as us. Considering it's the Hilton and there are two huge tour buses outside. Not to mention the big, scary, bodyguard-looking mugs that are walking around.

Anyway, we get to bed around 2:30 am. My internal alarm clock doesn't realize I don't have to get up with Monkey anymore and wakes me up at 7 sharp. I head downstairs, trying not to breathe in last night "festivities", and get myself some breakfast. For a Hilton, they sure don't give you much. If you choose to pay an extra $10, you can have a fresh-outta-Le Cordon Blue-graduate make you some pancakes. But for us stingy folks, you only get juice, milk, pastries, and coffee.

I go find a window to sit by and eat my breakfast. I realize, as I am putting jelly on my toast, that the guy sitting behind me must here with Snoop. He's talking about how they have another show tonight and how crazy it was last night. I'm not impressed though, with all that is going on, I have more important things to think about.
I know there is a Ronald McDonald house in the area, so I ask the front desk for a phone book, and give them a call. As the phone rings, I cross my fingers and pray "please have a room"...ring...ring...
"Ronald McDonald house"
"Yes, my son was just admitted to Ruby, what do I have to do to get a room?"
She tells me that they are full at the moment, but she takes my information anyway and tells me to call back around 2. She also says that even if they don't have a room available, that we can come by to use the facilities, shower, do laundry, and eat. They can also help us find a hotel at a discounted rate.
Awesome.
I hang up the phone feeling comforted. I know we can't afford $120/night to stay in the Hilton so it is so good to hear how much they are willing to help.
I head back upstairs, wake the hubby, and we pack up and leave to go visit Peanut. He is holding steady, his vitals are good, and there is no bad news. We spend some time with him then head over to the McDonald house.
Turns out it is right across the parking lot from the hospital.
Awesome.

They have a room! YAY! This is such a relief. After we fill out some paperwork, we get a tour of the house. There is a fully stocked kitchen and pantry, a huge living room and a play room for the kids. There is also a nursing room with two breast pumps I am more then welcome to use. We have our own locked cabinet to use, and a fridge. They only ask that we label the food in the fridge so others don't eat it. There is a laundry room and a game room we are free to use. The bedroom has two twins beds, a fold out bed, a closet and a bathroom. It is very plain but the rest of the house is gorgeous. As the girl shows me the quilt room, "pick some out for your boys!", I can feel the tears coming. The generosity and kindness that this house represents is overwhelming. The house is always full of parents whose children are suffering from illness or injury and it is completely run by donations.
She goes on to tell us, that by the end of our stay (which there is no checkout date) if we cannot afford to pay, then we are not obligated to. They understand that families come here with children who have costly medical conditions and they are not going to stick us with another bill. They only ask $12 a day, so it is very cheap, but families have been know to stay here for months at a time so it does add up. I'm so glad to hear this, I don't want to worry about bills right now.

We unpack our things at "the house" then head out for dinner. I know we can eat at the house for free, but the past couple days have been so hectic we just want to get out. We get dinner at the Roadhouse. It feels good to spend time with Hubby, laughing and making fun of people like we do.
But I also feel guilt. I feel so guilty every time I laugh. Every time I smile. I tell myself "you're not allowed to be happy! Your child is in the hospital, broken, and you are out having fun!?"
I can't stand myself.
And in the mornings when I first wake up, I forget just for an instant, what is happening. For the tiniest nanosecond I am happy. Then it all comes back...like a slap in the face...like a knife through the heart.
I remember.
I remember why we are here. In this strange hotel. With the hospital band still around my wrist.
My son is broken.

After dinner, we head back to the hospital to check in on Peanut. He is still holding steady, thank God, and his vitals are good. The nurse tells us that the doctors were talking about operating on Sunday but nothing had been decided yet. We ask her a bunch of questions she can't really answer, but she tries her hardest. She tells us to take those questions and write them all down so we can ask them to the cardiologist.

Back at the house, I sit down by myself in the living room to make a list of questions. I brought my ipod with me so I could listen to music but the songs are really getting to me. Specially "The long day is over" by Norah Jones. Even though it isn't about hardship or dying, the slow tempo and some of the lyrics make me cry. So there I am, curled up in a chair with my journal in my lap, crying. There are people across the room in the dining area eating. I just hope they can't hear me.
I can only cry and pray.
"Please God, don't take my baby. I want him here with me. Please don't make me a mother of a dying child. He's only 6 days old. I haven't seen him smile, heard him laugh, or watched him take his first steps. Please don't take my son."
My heart is breaking, the tears are falling, and my son is still sick.
I don't know how I'm going to do this.

God is amazing though. When I go back upstairs, after pulling myself together, I walk in on Hubby on the phone. It is a coworker of his, Joey, whose daughter has a heart condition as well. She has a condition called: cardiomyopathy-when the muscles in the heart are too big. When she was little she had to have heart surgery as well and her doctor is the same doctor Peanut has. Joey is telling Hubby that Peanut is in the best possible hands and if he doesn't know what to do, then no one will. He goes on to tell Hubby that he had his wife buy us some supplies in case we forgot anything. They had stayed in the McDonald house as well when their daughter had surgery. His wife will be coming through Morgantown on her way to Pittsburgh with their daughter. She has a doctors appointment the next day so they will stop by and drop off a bag of supplies.
What a guy.

After one more visit to the baby, we head back to the house and crash.
Hopefully, the next day will bring answers.

Day six

Friday: 25th


Mom and I leave the toddler with Hubby around 9 am and head to Beckley. Peanut's appointment is at 10 and I don't want to be late.
I am on doctors orders not to drive for two weeks but mom is driving like a Virginian, not a West Virginian speed demon, so I take over. I love the woman but it was making me ancy watching the speedometer stay at 65.
There aren't many words spoken as I drive.
We arrive at 10. It is rainy and cold, only making my nervous mood that much more dreary.
We stop at the ultrasound building first but they tell me Dr. E will probably come over later with us, so we should just head over to his office.
So we get in the car, drive 50 feet to his office, and park.

My first though when I see Dr. E is: Hobbit.
He is short, round, and has teeny little eyes that are a strange, very light blue, kind of color. His hair isn't blond but isn't white and he has tiny little round glasses that sit at the end of his nose.
I'm thinking: "Can this guy even see!?"
He wasn't anything like what I was expecting.
Tall, dark, and handsome would have made me feel better...
but ya know...you can't have everything.

Anyway...
The first thing he starts saying is he knows what's wrong but he doesn't want to tell us what it is until he runs an echo himself. So we load the baby up, drive the 50 feet BACK to the ultrasound building, and park.

So there we are. Sitting in a dark, hot room, looking at the echo screen but not understanding what we are seeing. The doctor and the technician talk among themselves...

I turn to mom and say: "I just don't want to hear anything about his aorta."
Swear to God, the doctor turns to us and says:
"He has a narrow aorta."

Are you freaking kidding me?! The ONE thing I didn't want to hear. The ONE thing I knew would mean a long and painful road for my baby.
I break down, feeling only fear for my child. The technician is apologizing and only making me cry harder.
And that's not all.
He has four small holes in the upper chambers, but the doctor isn't worried about those. He says those should close up on their own. What worries me is what comes next.
He says Peanut has two big holes between the two lower chambers that will need surgery to patch. His aorta is narrow and interrupted: which means it has a blockage of tissue.
He says that we should immediately head across the street to the hospital to get Peanut put on medication. He fears that if we wait too long, the aorta may close and we would have a major problem. We need to go to the emergency room and tell them to show us to a doctor ASAP. They call ahead to let them know we are coming and boot us out.

I can't keep myself together.
I head to the car, leaving mom to gather everything together. People are staring and watching me cry. I don't even care, I don't see anything, I only see my baby.
My FOUR DAY OLD baby is going to have to have surgery.
My NEWBORN is going to be cut open and operated on.
My child, who I haven't even gotten to know yet, will be taken away from me and poked and prodded by doctors and needles.
And it's not like the doctor said anything to calm me down. He just put it out there. "Put him on meds or he will die."
Like I can think of anything else.

Waiting on triage kills me. I can't sit still. I go outside to park the car.
I don't bother calling Hubby until I hear more.
I pace back and forth, still crying.
I start daydreaming...
I imagine myself in a waiting room..a doctor walks out, taking off his gloves, he looks at me and shakes his head. "I'm sorry, we did everything we could."
A fricking episode of Grey's Anatomy is running in my head right now.
God help me.

There is the usual amount of paperwork before I can see Peanut. They have him behind a curtain in the ER. I poke my head behind the curtain but immediately pull back. They are trying to get an IV in and I am not sticking around for that. It takes at least 15 minutes before one of the nurses finally gets an one in. My poor baby is crying and crying. They add more wires and tubes, they take another EKG and a chest xray.
I only see dollar bills flying out the ER doors.
"How are we going to pay for this?" I ask my mom.
She's too busy praying to answer.

They have called Ruby Memorial in Morgantown and are having them send a team of nurses to come down and pick Peanut up. It will take at least an hour for them to get ready then three hours for them to arrive.
It's going to be a long day.

A nurse comes over to where I am waiting by the ER doors. (Its the only place I get signal on my phone) She tells me she has called nurses to come down from Pediatrics to help put another IV in Peanut. They say that they need to start one for antibiotics but Peanut is so "hard to stick", she doesn't want to do it. She tells me that the nurses from PEDS are much better at putting IVs in little babies.
Oh great.
They are most likely going to put one is his head.
"Come again?"
Apparently there are good big veins running through babies heads that are good for sticking IVs in.
Like I said, it's going to be a long day.
An hour later, they are done sticking my baby full of IVs, tubes, and are done running tests.
My boobs are busting at the seams, so I ask a nurse if they have a breast pump I can borrow.
"I didn't bring mine..I didn't think I would need it."
No problem, she tells me, and escorts me upstairs. She gives me a kit to their fancy new breast pumps and a whole bag of goodies.
This, in a small way, makes me feel better.
Its lame, I know. But receiving a cute little bag full of breast pump supplies makes my day a little less traumatic.

As I'm making my way back to Peanut's "room", a short little old lady stop and asks me:
"Are you the mommy?"
I can only nod, holding back tears.
She then puts her arm through mine and starts praying.
This is the kindest, most thoughtful thing and it breaks my heart.
I can only sob as she and my mom pray for my baby. To have a total and complete stranger take the time to pray with you, to pray for someone they don't know anything about, is very moving.

I go sit by my baby and begin writing a list of belongings for Hubby to bring. I had called him earlier to let him know what was going on. I'm sure I scared the crap out of him, calling and not being able to say anything through the tears. He is a trooper though, and handles the news much better then I. He asks me if I want him to go to Morgantown with me, or my mom. I tell him I think this is way too important for him to miss, so he should start packing and head this way as soon as he can.

An hour and a half later, Hubby arrives. Mom says she should start heading back to our house; she will be watching Monkey while we go up to Morgantown. It has started snowing and she doesn't want to be stuck at the hospital, so we say our goodbyes.
Hubby informs us that not only is Monkey sick, but that the power at the house is out.
GREAT.
Mom insists she will be okay, gives me one last hug, and heads home.

Ambulance is still over an hour away.

Mom had told me earlier that she and my dad were talking; and he brought up a good point. It was an act of God that my water broke early. He said that, given Peanut's issues, he may not have survived a natural birth. His broken little heart may not have been able to handle the stress of a vaginal birth. I completely agree, and thank God for my c-section. I will never complain about my scar again.

Around 7 pm, the ambulance team arrives.
They are all very nice and professional; Hubby and I feel very comfortable leaving Peanut with them. Since they sent a team of four, there isn't any room in the ambulance for me to ride with them. We hang around to sign paperwork and once they have finished prepping Peanut for transport, we leave for Morgantown.
It's a long 3 hour drive, in the rain and darkness, to a place I really don't want to be at.
I don't want to be here. I don't want my baby to be here. I want to scoop him up in my arms and never let him go.
The uncertainty of what is going to happen is killing me.

The transport team calls us at 10:30 to let us know Peanut has arrived at the hospital. We start looking for a hotel.
Turns out, Snoop Dog is in town, so every hotel is booked.
My list of GREATS just keeps getting longer!
It takes us over an hour to find a vacancy then to FIND the damn place. You would think, with a map in hand, and only two turns to make that we would have found the hotel no problem. But this town is whack and we end up in the ghetto twice before we find our hotel.
We check in, drop off our things, then head to the hospital.
It's one am before we see our newborn.

The NICU is very quiet and dark. We walk into a room with four stations with four babies. Peanut is on the left with a doctor standing over him, running an ultrasound of his heart. She is quiet at first, consulting with her assistant.
A short while later, she motions us over and begins to explain what she is seeing.
She has a very neat Eastern European accent.
She tells us that he does indeed have four holes in his upper chamber, and two in his lower chambers. She is more concerned with his narrow aorta. According to her calculations, his aorta looks to be half the size it should be. She points out the interruption and where it is supposed to connect to the rest of the artery. She explains that they will have to bridge (go around) the blockage to fix the problem.
She can't answer many of our questions, as they all depend on what Peanut's cardiologist decides to do. But we leave feeling better with the little knowledge we now have.

*added January 25th, 2012*
follow this link to view a CHD awareness board on Pinterest, with Corbin's story