Tuesday, February 14, 2012

Bayden's Story

 It was March 13, 2009. Aaron took me to my weekly OB/GYN visit. My baby boy (who has no name) is due to make his appearance on March 20, 2009. We decided after my appointment, we were going to eat lunch at Checkers a.k.a. Rally’s. After we checked in, I started reading a parenting magazine. They called my name and we went back. The first thing they do is weight. I was at 173lbs. Not too bad considering I couldn’t gain any weight for the first 6 months. Next, they took my blood pressure. The numbers were sky rocketed. If I recall correctly, it was 185/111. She took it again. The numbers were still in the same area. We went ahead with my appointment, checked the baby’s heartbeat. They took my blood pressure one more time. The numbers were way too high. The nurse said, “I’m going to wheel you over to labor and delivery. Dad can drive around and meet you there.” What?? I can’t leave? No Checkers? Aaron came in the room where I was hooked up to a pulse ox, fetal monitor, and blood pressure cuff. I think we were there about an hour when the nurse came back. My blood pressure was not changing and it the doctor was worried about the baby. “How do you feel like having a baby?” she asked. Emotions flooded my body. Fear, anxiety, worry, excitement, fear, and more fear.

Fast forward 17 hours. March 14, 2009 at 10:37am, my perfect little boy, 6.5lbs and 20.5 in long, entered this world. He had all 10 fingers, 10 toes, two eyes, a nose, and a mouth. We named him Bayden Michael. He was absolutely perfect; the most beautiful thing I have ever seen in my whole entire life.

March 16, 2009: Time for us to take our little bundle home! Dr. Brenner made one more round before we were able to be discharged. She took out her stethoscope and listened to his heart. “I hear a murmur. I’m going to order an echocardiogram to make sure everything is okay.” Tears started falling immediately. Aaron kept telling me it was going to be okay. His best friend’s little boy had a murmur and it closed on its own. Nope, didn’t work for me. I couldn’t stop crying. They took Bayden to the nursery to do his echo. Of course, Mommy and Daddy were going too. We weren’t able to go into the nursery because of the other babies that were in there. We just stood at the window and watched. It took a little over an hour to complete his echo. After they were done, we took Bayden back to our room to sit and wait. They sent his echo to a cardiologist named Dr. Humes at Children’s Hospital of Michigan. A resident doctor came into our room about an hour later and said he’s taking us down to the NICU to talk to Dr. Humes over a webcam/satellite phone. My heart stopped. I knew the second he said we were going to talk to a cardiologist something was wrong. We dropped off Bayden at the nursery and walked to the NICU. He set us up in our own little area and closed the curtain. Dr. Humes introduced himself and what he does. He then said, “Bayden has a congenital heart defect.” Words that I will remember for the rest of my life. The resident that brought us down there handed us some papers with some foreign words on the top. “Tetralogy of Fallot”? How do you even pronounce that? My first question was, “Do you have to do open heart surgery?” When he said yes, I broke down. I don’t remember much of the conversation after that. I remember him describing the defect, the fatality rate, and open heart surgery.

After we were done, we went back to the nursery. I went to get Bayden while Aaron ran to his mom (who happened to show up at just the right time). I don’t even know how the nurse understood what I was saying. It was supposed to come out, “Can I have my baby please?” but came out more like, “blbualkjos”. She already knew. She wheeled Bayden to me and walked with her arm around me in the hallway. I was hysterical and couldn’t control my crying…which caused her to cry. I called my Mom and Dad and they came up to the hospital. A little while later, we were finally discharged to go home. This day began our heart journey, which will last for the rest of Bayden’s life.

A few days after I had Bayden, I had a follow up appointment with my OB/GYN for post-partum and my high blood pressure. Of course, I took Bayden to show off. After we got there, I told the nurse about Bayden’s congenital heart defect. She said, “They didn’t see it on the ultrasound?” No, they sure didn’t. I had to go back the next week for a blood pressure check-up and more labs to be drawn. When we showed up for that appointment, the doctor told me that he ordered my ultrasounds to be pulled. It took 4 different radiologists to go over my ultrasound. Not one of them could find Bayden’s defect anywhere.

That same week was Bayden’s very first cardiologist appointment. We met Dr. Humes at St .Joes in Ann Arbor. It was basically just a new patient visit. I brought my mom with Aaron and me to be a 3rd set of ears. I didn’t want to miss anything about Bayden’s heart defect. Dr. Humes gave us a book by the American Heart Association. It explains heart defects and preparing for surgery. He also explained to us what we needed to watch for: turning blue around the mouth and nail beds, tiring easily, no appetite, and rapid breathing. We were also told that they were going to try and wait until 6 months to do surgery. Bayden was still a tiny little guy and unless its life threatening, they would rather wait until there is more weight put on.

Bayden was sleeping in his basinet right next to my side of the bed. It’s crazy how many times an exhausted new mom will wake up a night just to make sure their baby is breathing. If I couldn’t feel his stomach moving up and down, I would put my finger under his nose. If I didn’t feel anything, I would move him. Then I would get an irritated squeak. That’s what I was looking for! This went on quite a few times during the night and also during his nap times.

In June 2009, We took Bayden for his cardiologist appointment down at Children's. That was our first time being there. Usually we see Dr. Ross/Dr. Humes at St. Joes. After Bayden was called in, we got his weight; still 10lbs. and his height; 24.5 in. Jodi came and did another Echo. Everything pretty much looks the same. He will have to have open heart surgery. We were hoping the hole would get a little smaller, but because of the size and location of the hole, and his Aorta is a little off, they will have to open him up.
Dr. Ross came to see him after. Bayden's breathing was a little fast for him, but he had been taking his Lasix every day. Dr. Ross would be meeting with Dr. Walters and Dr. Delius the following week. He was going to take them Baydens case for them to review. That is when they would decide if we were doing his surgery within the next month or if we were going to try and wait it out. Dr. Ross said he would call me the following Tuesday and let me know. After a very long week of waiting, Dr. Ross called us at 9:45 Wednesday morning. He met with Dr. Walters the previous Monday and showed him Bayden's case. Dr. Walters decided it was time. I called and made our appointment to meet with him and go over preparations. I knew this day was coming and I've been waiting for it. Meeting with the surgeon makes everything so real. “It's really going to happen now. I really don't want to do this, but who really does. But it's better to do it now and just get it done and over with.”

We went to see Dr. Walters at 3:30 on July 9th. This was our first time meeting him. I've heard nothing but excellent things about him. He explained what he saw in Bayden's echo. Bayden does have Tetralogy of Fallot, but a very mild case called "Pink Tetralogy of Fallot". His aorta is only a tiny bit off, which is no concern. The pulmonary valve is the perfect size and he is pretty sure there is no muscle build-up. So, the only thing that he has is the whole. He said he won't know for sure until he opens him up. In the echo, he could see where the wall started to form on both sides, but never finished. He explained that it will be complete open heart surgery. He will make an incision from the top of his ribs to the bottom. They have to crack his ribs open to get to the heart. At this time, Bayden will be put on bypass. After everything is “fixed” they will close his ribs, sew him up, and take him off bypass. Well, it sounded simple enough…for him. I was a wreck! He then chose a date. August 6th. It was less than a month away! Really!?! Panic set in.
August 5th, we went to Children’s to have his pre-surgical testing done. My poor baby was poked so many times. There were lots of needles, blood, x-rays, echo’s, electro…6 hours of testing. It was a very long and exhausting day. Tomorrow, August 6th is the day: The day my baby was scheduled to have open heart surgery.

I haven’t really talked about my feelings during Bayden’s surgery. Besides the tears, I didn’t let anyone know the thoughts or emotions I was feeling. I had to stay strong. I couldn’t stress anyone out even though I thought my head was going to explode. Here is the day of Bayden’s surgery:

The night of August 5, 2009, I was trying to get last minute packing done, spend time with the baby, make sure the puppies would be taken care of…it was stressful. At 9:30 pm, the phone rang. The caller I.D. said DMC. Panic set in. I answered the phone and it was Dr. Walters, Bayden’s surgeon. Dr. Walters just received a heart for a transplant patient and had to do emergency open heart surgery. He was cancelling our surgery for the next day. I was a little aggravated at the fact that it was cancelled, but happy that another child was receiving their new heart. The next day, August 6th, I received a call from Dr. Walters office. Bayden’s surgery was scheduled for Friday, August 7th at 10:00am. The only thing I could think of at the moment was “Oh God.” It was really seriously truly happening now. My son was having open heart surgery and we had to be there at 9am.

The morning of his surgery, we woke up around 7:00. Aaron loaded up the Jeep with our suitcases and all the extra stuff we’d need while we were at Children’s. I was in the living room with my mom taking pictures of my little man. I had to get one more picture of his beautiful chest. Then it was time to leave. It’s a 30-45 minute drive to Children’s from our house. The whole way there, I thought I might throw up. Thoughts kept racing through my head and I couldn’t control them. The closer we got to the hospital, the more nervous and anxious I got.

We pulled into the parking garage and started walking in the hospital. We took the elevators to the 2nd floor. I checked Bayden in when we got to the surgical family waiting room. My cousin Billy took us into the hallway where we said a prayer for Bayden. Then the nurse called Bayden’s name. Aaron and I took Bayden to be prepped. We dressed him in his hospital gown and waited. The nurse came in and said our surgery was pushed back a little. Dr. Walters had another heart emergency. By this time, lots of family showed up to the hospital. They we’re able to come in and out of Bayden’s room to see him. He started getting a little cranky because he hasn’t eaten anything in 7 hours. Around 12:30 or 1:00 (I can’t remember the exact time. Everything was blending together by then), the nurses came in the room. One told us after he was sedated and all the lines were put it, she would come let us know. It would take about 1 ½ hours. It was time. I have never in my life experienced as many emotions at one time as I did at that moment. We passed Bayden around so everyone could give him a kiss. Then I had to hand him over. I watched the nurses walk away with my little boy. The tears started flowing and it took a while for them to slow down. Now, we waited and waited and waited.

1 ½ hours turned to 3 ½ hours. Still, no word on my baby. I was already anxious and full of panic, but not hearing anything about Bayden just jumped up the anxiety. Why hasn’t anyone came out to tell us anything? Floor 2 was now vacant. No more surgeries and everyone, except another heart family, were around. I went into the room where Bayden was prepped. Nobody. Finally, I found two residence and asked them to please find me someone to give me information. About 30 minutes later, Dr. Walters rand out and pulled me and Aaron into the family counseling room. He apologized for the wait. He had another emergency with another heart baby. Relief was the only thing I could feel at the moment. After he told us about why he was late, I couldn’t be mad at him. I was more cranky at the fact that not 1 nurse could come out and tell me what the hell was going on. A little while later, the nurse came out (FINALLY) and said, “Bayden is now on bypass. We will be making the incision soon.” Aggravation kicked in. Everything at that moment started to annoy me. I love my family very much and I am thankful everyone was there, but all the voices started sounding like nails on a chalk board. I think I was okay, but I may have had an attitude. Trying to hide my fear of my son dying was taking a toll on my head. All I wanted to do was scream on the top of my lungs and yell at someone. I felt like I couldn’t breathe and wanted to just run away. My son’s life was out of my hands. A mother is supposed to protect her child no matter what. How could I protect him from open heart surgery? Easy. Just say Nope, not having it done. Then what good would that have done? It would have slowly killed my child. There was no choice in the matter. The only thing I could do is pray and beg God to be next to Dr. Walters as he worked on fixing my baby’s heart. I swear, time was not on my side. Every time I looked at the clock, only 5 minutes have passed. I needed to walk. I needed to be by myself. I started walking the 2nd floor halls. All the hallways are decorated with children’s drawings. I walked up and down looking at every last picture that were on the walls. After looking at all the pictures, I walked back. Another nurse gave us pillows and blankets so we could lay on the couches while we waited. I laid down and closed my eyes. There was no way I was going to sleep. It just felt so good to close my eyes. They were so heavy and I was beyond exhausted. I had to get up again. I started walking around. The T.V. was not keeping my attention. If I have the time correct, around 10:30, we were told Bayden was being sewn up and they would be taken off bypass soon. 30 minutes later, Dr. Walters came out to talk to us. He said Bayden did very well. He did have “Pink” Tetralogy of Fallot, but while he was in there, he also found an Atrial Septal Defect, Subaortic stenosis, and his PDA didn’t close so they put in a PDA clip. He also took care of all three of those things for us. Bayden also had a “mystery” vein coming off of his heart. In all his years doing pediatric heart surgery, he has never seen it. Basically, it was a vein coming out of his heart that didn’t attach to anything. It just closed itself off and stopped its blood flow. He just left it there for fear of what would happen if he removed it.  He said they would be bringing Bayden around to the elevators to take him up to 4th floor PICU. We could see him then. I stood in the hall by those doors. It seemed like an eternity. Finally, a nurse came out and said “You can see him now.” Everyone charged through the doors, Mommy leading the way. The second they pushed Bayden in front of us I couldn’t breathe. There are no words to describe what my poor little guy looked like. After we took a few pictures and gave kisses, we walked back out. We got all our stuff together and went up to the 4th floor to wait. It was midnight. We’ve been at the hospital for 15 hours now. Besides the 5 minutes of seeing him after surgery, I haven’t been with my baby for 11 hours. It was time to go see Bayden. When we walked into his PICU room, there were machines and wires and monitors. This was the first time I was able to see his incision. He had tubes coming out of him, wires all over, breathing tube in his nose to his stomach; he was completely covered. It killed me. I could not hold my baby. I could only touch him and kiss him. Seeing him lying there so helpless broke my heart into pieces. We had to do this though. He has a happy “fixed” heart now.

It is one year later. It seems like I can remember every detail about that day, but at the same time it’s such a blur. He is almost 17 months. He is a happy, healthy, growing boy who is getting into everything imaginable. He is curious about everything and loves to “Vroom Vroom” with his cars and planes. He loves baseball, playing catch, and kitty cats. My family and I have been truly blessed with Bayden. I’ve never had so much faith, hope, compassion, love, anxiety, or stress in my life as I had then. I wouldn’t trade my Heart Baby for anything. He has taught me what strength and fighting really is.

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