Ashlynne's Story

I had a completely normal pregnancy with Ashlynne.  I found out at 4 weeks and 1 day that I was pregnant, so we had lots of time for ultrasounds!  I believe that I had 6-8 of them and was told that everything was perfect and that we were expecting a wonderful, healthy baby girl. 

 I had a scheduled c-section because my first daughter was born by c-section.  Ashlynne Marie Morey was born on June 29, 2011 at 8:04am weighing 8lbs 3ozs and 19 3/4inches long.  She was absolutely perfect!  When the nurses took her to the nursery for her stats to be done 3 times a day, I hated it because I didnt want my newest lady to be away from me for even a minute!  She passed her hearing test and her other little tests that they do with ease.  Since she was a csection, they make mommy and baby stay in the hospital for 3 days. 


On our second night in the hospital, Ashlynne went to the nursery to get her weight done, a bath, and for them to listen to her heart.  They brought her back and said that everything was great.  The next morning, her pediatrician came into my room and told me that a nurse that was working on the overnight shift thought that she heard a small murmur in Ashlynnes heart.  Then she proceeded to tell me that on a scale of 1-5, with 5 being the worst case, Ashlynne was less than a 1.  After our little chat about murmurs, Dr. Kane told me that they were gonna release us that day (July 1st) and that since it was 4th of July weekend, they were gonna send us an hour away to go to see a pediatric cardiologist, just to ease our minds over the holiday.  

They made us an appointment to be seen at 11:30am and we weren't released until around 11.  They said "Dont worry if your late, they will still see Ashlynne" and that is when we started getting really nervous.  Upon our arrival at the peds cardiologist, they called us back almost immediately.  When the doctor came in and listened to her heart, he thought that she may have stenosis in a valve, and that it would probably end up just fine. 

Then they sent Ashlynne to get an EKG and then an Echocardiogram.  We waited eagerly for the doctor to return to the room with the results.  What happened next was unbelievable.  My fiance and I were told  that our 2 day old baby has a condition called a Complete AV Canal defect and would require open heart surgery before she turned 5 months old.  What happened after that, im not quite sure, I was so unbelievably shocked and stunned that I didnt hear much of anything.  Ashlynne would now go to the pediatrician multiple times a week to be checked and to the cardiologist at LEAST twice a month.  It seemed like we lived there. 

At three weeks old, Ashlynnes dad and I noticed that her breathing had started to change and that she seemed to be going a million miles an hour with her little lungs.  The doctor then put her on Lasix, a water pill type of a medicine, to help with Ashlynnes breathing.  She continued to see the doctor every 1-1 1/2 weeks for weight checks and to just listen to her.  Everytime we went to the doctor, there was an intern or a nurse or another doctor that listened to Ashlynnes heart, because not many of them had heard a baby with this condition.  It felt like she was a circus attraction at times. 

Ashlynne continued slowly gaining weight and growing, but in NO way was she growing like normal babies.  Around 3 months old, we were finally able to get Ashlynnes records sent over to the Childrens Hospital of Philadelphia (CHOP), and got to meet a wonderful peds cardiologist, Jodi Chen.  Dr Chen saw Ashlynne and they did an EKG and another Echocardiogram and with the results, they scheduled Ashlynne to have surgery. 

 It seems like everything went so fast after that point.  Ashlynne had surgery to correct her CAVC on October 28, 2011 with Dr. Stephanie Fuller.  I dont think that I have ever been so terrified of anything in my entire life as I was that day.  After handing off Ashlynne to the anesthesiologist around 8am, we were sent up to meet and talk to Dr Fuller, who would explain to us the entire procedure.  She was a very nice woman, very calm and confident. 

 After talking to her for about 15 minutes, she went to start the procedure.  My fiance and myself were to stick around the hospitals "bridge" or around the Ronald McDonald rooms that were set up for the parents in the hospital so that we could get our hourly updates on Ashlynne.  Jess, our nurse, was amazing.  She came and found us less than an hour later to let us know that Ashlynne was just put on bypass and they were gonna start the repair.  My nerves at this point were absolutely shot.  About 45 minutes later, they were DONE!!!! They were going to do an echo in the OR and then sew her up! 

Thank God that our baby was fixed!!!  We then sat in a room for what seemed like forever, waiting on Dr Fuller to come talk to us again to let us know how everything went.  She finally came in and said that everything went well and Ashlynne was in the CICU (Cardiac Intensive Care Unit) and being cleaned up and set up for us to see her. 

  

About an hour after that we finally got to see her.  Our little trooper was sleeping so peacefully.  She looked great, consitering what she had just been through.  She was gonna be sleeping for much of her time in the CICU, so that she could heal.  I wasnt allowed to hold her until the night of the 31st, because she went into JET, so her heart rate was funky so they kept some wires in her that they normally would have taken out.  Those 4 days were the hardest 4 days of my life.  Watching her lay there and not being able to scoop her up and love on her. 

Ashlynne went into the CCU (Cardiac Care Unit) on November 1st which was 4 days after surgery.  She was awesome.  She finally got to take a bath.  And we were given a little box so that we could walk around the floor, instead of her laying in bed.  It was the best!  And finally, the next day, we were able to go home!  Only 5 days after having open heart surgery!!!!  What a trooper our Ashlynne has been! 

About a month after surgery, Ashlynne was allowed to stop taking her lasix and has been medicine free for over 3 months now!  She has a residual VSD, which means one of her patches on her heart has a little leakage around it.  In the future Ashlynne may require another surgery to correct this, but as of now, she is doing great! 

The cardiologist has cleared her for no visits for 6 months to a cardiologist!!! This is amazing since we pretty much lived at doctors offices for the first 4 months of her little life.  Ashlynne is now 7 months old, and doing amazing.  She just got her first tooth a few weeks ago, and shes sitting up like a trooper and trying to get around.  I have never seen such an amazing baby in my entire life, and I thank god that her story has ended up a happy one.

Here is a link to the video story that her Mama made.

http://www.youtube.com/watch?v=TO2HQt2xOH4&context=C3e7772eADOEgsToPDskI6XF0K_49WK7mFcY0qvhsR

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.

Jacob's Story

November 18, 2009 was a day that I will never forget. My husband and I went for our 20 week ultrasound expecting to hear if we were having another little boy or a baby girl. The joy of learning that we were having another baby boy was short lived. Right after the ultrasound tech got extremely quiet and we knew something was not right. She told us that there was something wrong with the heart. We were devastated and so afraid for our son. The next day we went for a heart echo and his diagnosis was confirmed, our son was going to be born with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a severe congenital heart defect where the left side of the heart is underdeveloped of not there at all. Jacob’s was small and completely closed off. He also had a restricted atrial septum. This is the only outlet blood had to move through his heart and children with that added defect have an even lower chance at survival. We wanted him to have the best chance possible so we decided to travel 9 hours to have him at The Children’s Hospital of Philadelphia.

Jacob was born on March 23, 2010. Within hours of his birth that Septum became intact and they were losing him. He was rushed in for an immediate heart catheterization to open it up. His xray showed his lungs were flooded and the doctors were afraid he would not make it.

Jacob did make it. 9 days and 2 bacterial infections later on April 1^st 2010 he was stable enough for his first open heart surgery (Stage1: Norwood). This was also the day we were able to hold our baby for the first time. Kissing him good-bye and watching them wheel him to the OR was the hardest thing I have ever done. I told him to be strong and that I loved him. Jacob did very well during his surgery and was off the ventilator 5 days later.

Jacob continued to improve however he had very labored breathing. He couldn’t drink much by bottle because it was too risky and to tiring for him.

He had a g-tube and Nissen surgery done on April 20^th. After a dose of Morphine I watched Jacob’s numbers on the monitor suddenly drop. The nurse ran in and started patting him and telling him to wake up. They continued to drop and I could do nothing but stand there and watch and pray. The resident ran in and put Oxygen by his face and they hit the alarm; a sound I never want to hear again in my life. The alarm meant they need the crash cart, it’s bad. As a parent every time you hear that alarm you are frozen with fear. About 50 doctors ran in, the room flooded so fast. Thankfully the oxygen brought him back and no further intervention was needed.

His body had stopped breathing because the morphine was too much for him. I will never forget the fear I had that moment, thinking I lost him. It is not a feeling I would wish on any parent. It took a few days for the drug haze to wear off but he recovered from his surgeries and we were finally released to come home after 8 weeks in the hospital.

At 4 months old we went back to CHOP for Jacob’s second open heart surgery (Stage 2: bi-directional Glenn). They thought his septum had grown back and went in to clear some more and a hole was punctured in the back of his heart. This is common when going back to get the septum. Thankfully he has an amazing Surgeon and he was able to (with difficulty) close up the hole and stop the bleeding. Jacob recovered amazingly well and we were home just 6 days later.

You would never have guessed he had just had open heart surgery. Jacob came home on Oxygen because his oxygen would drop whenever we tried to wean him at the hospital. He was on it for a month and then once fully recovered was able to keep his numbers where they should be.

 Jacob started drinking by mouth and within a few months he no longer needed to eat by his g-tube. This kid has a HUGE appetite; he made up for lost time lol. When he turned a year old we had some more testing done because of his “unique” breathing. We learned that both of his vocal cords were paralyzed. Scar tissue had built up around the vocal cords tethering them together. His airway is the size of a pinhole. It is amazing he could even breathe without assistance. Only 5% of kids with the airway can breathe without a Tracheotomy tube and he not only has half of an airway but also has half of a heart!

Even though Jacob has continued to be able to keep his oxygen at a good level for his heart his breathing is dangerous for him. He is exerting too much effort just to breathe and as he gets older it will become more difficult. Doctors in the top two airway hospitals both agree that he needs a airway reconstruction surgery. He is scheduled to have it on April 25, 2012. They are going to first try to go through his mouth to cut the tissue and see if that works. If it doesn’t then they will have to go through his throat and use his rib to create a graft which will hold the airway open. We are so scared about this surgery. I guess because he is so happy and doing so well at home. I knew about the heart stuff, I was prepared for it. I knew that he needed that to live. I was not prepared for this. Jacob will also need at least one more open heart surgery (Stage 3: The Fontan) which he will have when he is 3 or 4 years old. It kind of depends on what happens with this airway surgery.

Jacob doesn’t speak much because it takes so much effort to breathe. He makes sounds and says 2 or 3 words. He is learning to use American Sign Language which has opened up a whole new world for us. I am so proud of him and amazed that he has found a way to communicate with us. It was so hard seeing him get so frustrated with not being able to communicate.

When we learned about Jacob’s heart condition we were devastated. I never could have imagined that my life would have gone down this path. I hate that Jacob has gone through all that he has but I am blessed that he came into our lives. Jacob has taught me so much about the true meaning of life. He has taught me to slow down and cherish even the smallest moments. I won’t lie I still have days where I want to pull my hair out, I am a mom after all. The point is that even in those moments I realize how lucky I am to have those moments.

This life is scary; a little cold makes me worry that it could take him from me. This life is also beautiful; watching him smile and play like any other child. His smile is brighter than anything I have ever seen. I have formed relationships I never would have known had it not been for Jacob. I refuse to spend my life fearing Jacob’s death, Instead I spend it focusing on the beautiful life that we were given. Jacob may need a transplant one day, but the way I look at it is 30 years ago his diagnosis was 100% fatal. Today some centers have a 92% success rate. Who knows what they will come up with in another 30 years. Where there is life, there is always HOPE!

Heart Hugs,
The Baker Family



Emma's Story

Today I chose to profile a heart child who is celebrating her birthday today. Sad thing is,she is celebrating it in heaven. That is reality for so many heart parents and it is heartbreaking.

Emma is my 3rd baby. My boys before her were normal and healthy but from the second I was was pregnant with her I knew I felt funny. I figured I was pregnant with a girl. Yay for me I was, my first princess.

At 14 weeks we were sent to a specialist because her right kidney was enlarged, while going for ultrasounds every few weeks it continued downhill. At 18 weeks they said she had a heart problem but were not quite sure what it was. At 21 weeks they said they could no longer see the problem in her heart but I'd continue with the ultrasounds because of her kidney. I knew that they were wrong. Everyday I argued back and forth with myself over her heart. I even had them print ultrasound pictures of her heartbeat out instead of normal baby pictures. They thought I was crazy. I should have pressed harder to get answers and have the doctors dig a little deeper. I learned through my pregnancy with her that I should always trust my gut. She was delivered via c-section 5 weeks early after an ultrasound the previous day when they brought up again that she has a heart problem. I was told it had something to do with her aorta. I had an amnio the morning of her delivery and waited for the results. I prayed her lungs were mature enough for delivery. One week in the NICU and she came home with extensive follow up with all types of specialities. Mainly cardiology.

At 2 months old we were prepped for the worst... She had 4 different heart problems. Hypertrophic Cardiomyopathy, Endocardiac Cushion Defect, Pulmonary Valvular Stenosis and Sub-Aortic Stenosis. The kidney was put on the back burner because it was functioning fine.

At seven months old Emma was finally put on the transplant list for a new heart, after me yelling and screaming at the hospital that she was going to die and they wouldn't do anything. I think stress got the best of me. 17 days after being placed on the list she received her new heart. 10-7-09!!! YAY! She was just under 8 pounds at the time. It was the scariest time of my life. My fear was not for Emma but for her siblings. I always treated them like adults throughout her journey because I knew if I sugar coated how bad it could get then they wouldn't be emotionally stable if she ever died.

 

We then spent 3 months in the hospital because the heart was just a bit to big for her chest. She eventually was placed with a trach because she developed tracheobronchomalacia as well as left main bronchus compression and I had to go through all types of training on CPR, meds and overall care for a bed bound baby! She had an NG tube for the remainder of her life. Her brothers (ages 6 and 4) even learned all about her vent maintenance and helped with the daily up-keep of it! They were so brave for her.

 

She started to grow at the time of her death she was just over 15 pounds.

To her death: The night before she went into cardiac arrest she start throwing fits, which she had never done. For example, she would kick her legs up, slam the down... arch her bach. The next morning we had a doctors appointment but before that time even came I had called my transplant nurse because of her change in attitude. She said she'd take a look at Emma when we came to the hospital in a few hours. Emma's heartrate was normal and her pulse ox was 96. I started to get Emma ready... changing her clothes, trach ties, etc. Well Emma started throwing a fit, followed by the worlds largest poopy diaper. Seconds after I changed her diaper she passed out. Turned blue and stopped breathing. CPR followed with 911. EMS worked on her for 35 minutes while taking her to the closest hospital. Once stabalized she was transported to Children's Hospital in Detroit. Days later after EEGs and MRIs we were told that lack of O2 lead to complete brain stem damage. We really had one choice and that was to remove her from life support.

I have found great peace in knowing that I was the last thing that Emma ever saw! My touch was the last thing she ever felt before she slipped away! It was me! I never left her side!

That all started on Feb 4th. She was turning 1 on Feb 12. Her father and I decided to wait for her birthday so all the other kids (13,11,6,4) could see that she made it to her first birthday! 3 days later we removed her from life support. It took just over 45 minutes for her heart to stop but it was very peaceful! I held her the whole time. We even tried to donate her organs back but again lack of O2 during her passing made it impossible. But we found out after her death that the "swelling" of her right kidney was because it was 2 kidneys fused together both fully functioning. Which was so cool to me!

 

 

 

Emma has taught me so much about the true meaning of love! I have many rough days but overall I have found that if it weren't for her life and death then my family would still just be existing in the world today! Now we try to make a difference and stay positive! I am forever in debt of my daughter Emma! 

Joshua's Story

I was about 16 weeks along when I went for an ultrasound. I've always been high-risk because of being diabetic and losing 5 babies. I saw the flicker of the baby's heartbeat and thought everything was ok. Then the doctor came in and said "As you know, we're looking at a large hole in the heart." No, I didn't know.

The next few weeks were a whirlwind of genetic testing and the OB kept asking if I wanted to abort. For me, no matter what the outcome would be, I couldn't do that. April 28, 2009, Joshua was born via c-section. The NICU at the hospital gave him to me to see for only 2 minutes before they transferred him via ambulance to the Children's Hospital of Michigan. I busted my butt to get discharged so I could be with my baby. I didn't get my staples out for a month because I wouldn't leave him to go back to the other hospital.

 First time I saw him, I was terrified. I wasn't prepared for him to look like that, with all those wires and tubes. :( They had done testing to see what all was wrong and he was diagnosed with Tetrology of Fallot, Pulmonary Atresia, Complete Atrioventricular Canal Defect Type A, as well as a T3 hemivertebra and an inferior and swivelled right kidney. The BT shunt was done at 8 days old. Unfortunately, my sister, brother and cousin were also due around that time so I was alone.

He was in the NICU for 3 weeks and before he could be discharged, I had to learn CPR as well as how to place his NG feeding tube. The NG tube was the scariest for me and deservedly so. He wound up pulling it out at least 5 times a day and was later diagnosed with choeneal atresia and CHARGE Syndrome as well. He had failed his newborn hearing screening four times and it was discovered that he had bilateral sensorineural hearing loss. At 4 months of age, he received a G-tube and at 10 months, the Mick-y button. He was in OT and PT to help him to learn and eat and develop his gross motor skills. He had a heart cath in Oct. '09 and it was discovered that he would need the repair soon and his O2 sats were at 49.

So on Nov. 10th, at 6 months of age, he had his tet repair. He had to be re-intubated four times as he kept crashing. His breathing became retracted and it was discovered that his right lung had collapsed and blood was pooling around his heart. That was horrible for me to see my baby struggling like that. They had to do a conduit as opposed to the patch so he will need surgery to replace the conduit every 2-5 years. His mitral and tricuspid valves both leaked after the repair but the tricuspid closed up on its own.

He had surgery to repair the mitral leak, replace the conduit and do a pulmonary angioplasty on Aug.23rd, 2011. He suffered a min-stroke post-op and it took weeks for him to fully recover but thankfully, he did recover.

He has also had surgery on his ears and his testicles. For now, he is a happy, smiling,amazing warrior and I couldn't be prouder to be his mom. <3

Nicole's Story

Nicole Fitzgerald: diagnosed at age 22 with atrial septal defect, tricuspid and mitral regurgitation, pulmonary hypertension.

 

I got pregnant with my first daughter and alot of things started happening.I had just turned 18 when a few days in a row, parts of my face started going numb. I was young and dumb and thought life was a joke, so I didnt even worry about it, I just thought it felt weird and laughed it off.

 

About 2 weeks later, I woke up in the middle of the night with the WORST headache of my life. My head burned, and my ears and everything. I literally just sat on the bed curled up rocking back and forward until i finally just passed out from the pain. After that, every day for 3 years straight, I had a headache. They ranged in intensity from slight to very bad. It was horrible at first but I eventually got used to the headaches. I also got purple areas on my lower legs and hands. I got preeclampsia with her and was put on bedrest. I told my OB over and over that I was feeling horrible. I always had times when I felt as if I were going to pass out. I got short of breath doing everything. I couldnt even be a kid anymore and run or anything. My heart rate was so fast it made me feel lightheaded.

 

I started getting arrythmias daily. After I had Kaylie, I just went about my life. Feeling horrible every day, I finally went to the clinic and got some medicine for my fast heart rate. I was put on metoprolol. It worked decent at first. They did an ultrasound of my heart. It was shown as being fine except i was on the upper limits of normal heart size.

 

At the age of 21 I got pregnant again. I was scared honestly because I knew something was wrong with my heart. I had spent years researching what the heck could possibly be wrong with me. I was tested for Lyme Disease, MS, and a stroke. I also had a MRI of my brain that showed white matter, but that was never further investigated. I went about my pregnancy and I was doing quite well.

 

The hormones from the pregnancy made my headaches go away which was nice. I was actually down to 1 beta blocker pill a day which was great cuz I usually took around 3. Everything went great until the 5th month when I got SO out of breath. I told my OB and she had me sent to a cardiologist to check my heart. He noticed that my fingernails and toenails were blue and he had me walk around the room with a pulse ox don and my oxygen dropped to 80. He did an ultrasound with saline bubbles and that day when I watched them inject the bubbles into me, I saw it and I KNEW that seeing the bubbles go from one side of the heart to the other, wasnt good.

 

I went back to the cardio and he told me I had an ASD. He put me on bedrest so that my pregnancy wouldnt be harmed from the lack of oxygen. I was told I needed it repaired since it is causing cyanosis and low oxygen levels. I think of Brennan as my miracle baby because if it werent for him, I would have probably never found out what was wrong with me because I had been to many doctors before and they had all thought that i was insane and nothing was wrong with me. Now i know all of the headaches and things were from low oxygen.

 

Now i have other secondary things wrong with me from being undiagnosed. Like a bad gallbladder, enlarged spleen, kidney problems, interstital cystitis. I've had SO many doctors tell me it was all in my head. They would try to prescribe me SO many pills that I always refused. They thought I was nuts for refusing the medicine, but sorry I'm not going to get addicted to some pills just because a doctor carelessly writes prescriptions!!! I was even prescribed Zoloft during my first pregnancy, which now I am VERY thankful that I never took it, because I see all the commercials that say Zoloft causes severe heart defects if taken during pregnancy!!

 

 

Echo update + Drew's Story

Well the Echo results came back normal. So I am still no where closer to finding an answer for my fatigue & low energy.

MAJOR DISAPPOINTMENT!

I am going to do some research and figure out where I should go from here. I don't want to be tested for anything that I don't fit the criteria for. So I am not going to run back to my PCP just yet. Maybe it's as simple as a diet change?

On to other things. For the heart story today I choose to feature a boy who I have known since he was about 3.Today he turned 8 years old! I am so proud of the accomplishments he has made in his life and I feel confident in saying that God has an awesome plan for his life.

HAPPY BIRTHDAY DREW!

Drew was born on February 9, 2004 and surprised his family with the news that along with a full head of hair, he also had a broken heart. Drew was diagnosed with an interrupted aortic arch and a large hole between the pumping chambers of his heart about 24 hours after he entered the world. His heart was unable to pump oxygenated blood to his body and he needed surgery to live.

There is no cure for Drew's disease, but a series of three surgeries is commonly performed. When Drew was one week old surgeons at UCSF performed the first stage, a Norwood procedure. After ten long weeks in the neonatal intensive care unit he was finally able to go home. He had a feeding tube and 9 different medications. In June 2004, when he was four months old surgeons performed his second heart surgery, the Glenn. He was in the hospital for three weeks. When he came home he had a lot of help from many different people, including a home health nurse, a physical therapist, occupational therapist, infant specialist, speech therapist and music therapist, not to mention doctors in cardiology, endocrinology and immunology.

When Drew was 4-years old he underwent his third open heart surgery in May of 2008 at Lucille Packard Children’s Hospital. Surgeons were able to do a one and a half ventricle repair which restores normal oxygenation. Unfortunately he developed a serious sternal wound infection which required him to stay in the hospital for six weeks after surgery. Once he recovered from the infection though, there was no stopping him! He is no longer on any medication and he has more energy than he ever has. He enjoys playing soccer, baseball and basketball with his friends and is doing great in school.

Drew has endured much in his first four years of life. He also has a compromised immune system (he was also diagnosed with DiGeorge syndrome), which means that he has a hard time fighting infections. He has been hospitalized with pneumonia 4 times. Despite all he’s been through he is a very loving and trusting little boy. He enjoys life and reminds me to be thankful for all that I have. The last four years have thankfully, been mostly uneventful. Drew is now in second grade and doing all the typical 8-year old boy activities. We have been blessed to be hospital free since his last open-heart surgery!

Going through a traumatic event like this changes you.  It has the potential to rip a family apart, to drive everyone past their breaking point, or to bring you closer together and find strength in God and in yourself.  Luckily we have had the latter experience.  My husband and I have learned so much about ourselves, each other, and our relationship.  It has strengthened us and we know that we will always have each other to lean on.  God has become a much bigger and important part of our lives now.  It is through the grace of God that we can find the strength to get through each day.

The birth of my son has without a doubt been my most inspirational experience.  Although I never would have asked for a child who needed heart surgery, or to have to go through this horrible experience, a lot of good has come out of it and I would not trade my special little boy for anything.  I would go through the ups and downs, the horrible days and little miracles a thousand times just to spend one day with him.  He is truly a blessing in my life and in the lives of everyone who meets him.  He is my inspiration.

 

 

Andrea Himmelberger

 

You can read our family updates at

www.himmelberger.blogspot.com

Jarod's Story

When we first found out we were going to have a second child, we were thrilled. Our oldest son was 3 years old and we just knew the timing was right. It wasn't long though before our lives would be changed forever. 

At a routine ultrasound, my OB was spending an awful lot of time on a particular area and then went out to get another doctor to get his opinion...their silence spoke volumes. I of course was a nervous wreck and my OB tried to assure me that it was just precaution and I was referred to UVA for a fetal echo. It was on that spring day in 1998 that has lead us down the path we have been living for the past 12 years. The pediatric cardiologist confirmed the hunch my OB had which was yes, our unborn son had hypoplastic left heart syndrome (HLHS).

At this time we met with a surgeon, met with a second OB who offered to terminate the pregnancy, even though we were at 22 weeks, which was not an option and we talked more with the pediatric cardiologist. We were given the options of 1) Transplant, 2) The 3 stage surgical repair or 3) comfort care. We took in as much information on the defect as we could and went home to research more on the internet. I don't think I stopped crying for a week but vividly remember my 3 year old son telling me "don't worry mommy, the doctor's will fix his heart".

As the months went by and after much research and a second opinion at MCV, we decided that MCV would be the best place for Jarod to have his surgery. We had close, weekly follow up visits with my local OB until Memorial Day weekend of 1998 when we made the drive to Richmond to be admitted for induction. It was a long labor and finally, at 3:30 in the morning on 6/2/98, Jarod arrived into the world very quiet and was whisked away just as fast as he came into the world...it was barely a glimpse that we got of him before he was taken to the NICU, they didn't even take time to get an arm band on him.

We had a lot of doctors and nurses in and out of the room with updates, concerns and even thinking that surgery couldn't be performed because he weighed only 5 pounds, 4 ounces. After the surgeon evaluated Jarod, he felt he could proceed and surgery was scheduled for 2 days later. Jarod sailed through the surgery and was home in less than 2 weeks but did have to come home with a feeding tube which lasted about 3 months.

We settled into our routine, and were now used to the multiple doctor appointments and feeding tube. It was not long before we learned that the surgeon was moving to Texas and we knew the second stage of the procedure was done around 6 months old. Near that time, Jarod started having more symptoms and was working really hard to breathe. Not sure what to do, our cardiology team at MCV had trained with Dr. Norwood when he was at CHOP so they called him for a consult and on 12/27/98 we were on our way to A.I DuPont Hospital for Children for Dr. Norwood to perform the hemi-Fontan. Jarod sailed through that surgery and was home in 5 days! Unfortunately, soon after getting home, Jarod came down with a respiratory infection which landed him in our local hospital for a week, testing positive for RSV, which lead to his asthma.

Once again, we settle back into a routine but in this time we notice that Jarod isn't hitting those milestones that he should be so our pediatrician ordered a brain MRI which showed that he had cerebral palsy...this was more devastating to me than the heart defect because at least they were working to fix the heart but the CP was something that would not get better. Once again we were faced with another obstacle and more specialist appointments and just didn't know what the future was going to hold for Jarod. There were some doctors that said he would never walk or talk...sometimes the doctors just need to step back and realize that they are talking to a parent who will go to the end of the earth and back for their child. We ended up going to Kluge Rehab Center for Jarod to be fitted for a wheelchair and as I watched him, it broke my heart and I just couldn't commit to a wheelchair. I felt that if I put him in the wheelchair, that would be where he stayed. It wasn't long before he pushed his walker aside and started walking. Though his speech still needs a lot of work, he is talking and goes to regular school.

Ahhh, things are starting to seem really normal with the doctor appointments becoming fewer and fewer and all continues to go well. We had a year without any procedures but at a routine follow up and meeting with the new surgeon at MCV, he told me that "I think I can fix this if we wait a year". My medical and mom radar was going wild and I insisted the results be sent back to Dr. Norwood so he could complete the repair which we did in 6/00. Once again, Jarod sailed through the surgery but he ended up developing a blood infection that landed us almost 6 weeks in the hospital for IV antibiotics

Now, that the repair has been completed, we sit back and look in amazement at how Jarod continues to inspire so many people. He has this severe heart defect that required 3 major surgeries before 2 years old, asthma, cerebral palsy, Celiac disease, thyroid problems and now may have borderline diabetes but he always wakes up every morning with a big smile and a go get em attitude! I only wish I had half his courage and bravery.

Thanks for taking the time to learn about Jarod's Heart. Please feel free to e-mail me with any questions you may have at sjdcma@comcast.net

Heart Hugs,

Stephanie & John

Bodie's Story

On October 1, 2009, our world changed forever - the day we heard "your unborn baby has a congenital heart defect." Although we knew it was serious, it would take weeks and several more ultrasounds and fetal echoes before we would have a final diagnosis of Hypoplastic Left Heart Syndrome. Our sweet baby was to be born with half a heart.

We spent the next 4 months crying, pleading with God and praying for a miracle. We thought He would answer by healing our baby's heart before birth. But as God often does, he answered our prayer in another, much better, way. He gave us a little boy who would have more fight in him than we could ever imagine. A baby boy that would have not only half a heart, but odd genetic arrhythmias and a ridiculously low resting heart rate to go along with it, but who would fight on and astonish everyone. A baby who would be a daily testimony to the amazing power of our Lord.

Our sweet boy, Bodie Isaac Bennett, was born on February 16, 2010 at a hefty 7lb13oz and 20.5in. He had his first open heart surgery, the Norwood, on February 22, 2010

He had a fairly rough recovery before finally coming home at 6 weeks old. He had a paralyzed vocal cord but managed to take all of his feeds (thickened) by mouth. He also had an unexplained dependence on oxygen and was sent home on 1L of oxygen. Our life settled into a new "normal" between round the clock meds and oxygen.

3 weeks later, he became slightly lethargic during his feeds, so I took him to the ER just to get him checked out. Within an hour of being there, his oxygen sats had dropped so low they needed to “bag” him and send him directly to the CTICU. The next day, they sent him for a cardiac catheterization. He coded on the table, and again once he got back to his room. We almost lost him that night, until an angel of a doctor decided to try pacing Bodie externally. Within an hour, he turned around. A week later, he had his second open-heart surgery, to install a permanent pacemaker and change out his shunt. He came out of surgery in great shape and flew through recovery, coming home just 2 weeks later!

4 days after that, he was readmitted to the hospital with blood in his stool. During the week it took them to determine than it was c-diff (a nasty hospital-borne infection), he contracted parainfluenza from a roommate. We almost lost him a second time as he was rushed to the CTICU and intubated. Once they got him on the right antibiotics, he was able to be extubated and recovered nicely. He was moved to the step down floor and spent 30 hours there before being rushed back to the CTICU again in critical condition. He was again intubated and given medical support as they determined that he had an MRSA infection in his blood. He then spent 6 weeks in the hospital on IV antibiotics (5 of those weeks were spent in the CTICU as he needed a heart medicine, milrinone, due to the beating his heart took from all of the infections). 

 

The day he finished his antibiotics, he was discharged! He then spent almost 2 months at home, growing and thriving. He did amazingly well while at home and we cherished our time together, as a family of 4, finally at home!

On September 13, 2010, at 7 months old, Bodie underwent his third open heart surgery, the Bi-Directional Glenn. By all accounts the surgery was a success. He was extubated the next day and home 4 days later! 

Bodie has been home since then (other than a 1 night stay for a virus induced tachycardia (high heart rate) in August 2011) and is thriving. He is now a rambunctious almost 2 year-old. He LOVES to climb (on ANYTHING) and is in a perpetual state of motion – we call him the “tornado with legs.” Honestly, other than getting more winded than your average kid (which he doesn’t let stop him AT ALL) and giving him meds 3 times a day (which is no harder than giving a kid Motrin or Tylenol – it’s not nearly as bad as it sounds), he’s just like any other little boy. If you don’t see his scars, you’d never know what he has been through. He is a ball of fire and keeps us laughing all day long. We are loving watching him grow up with his big sister.

We know Bodie has at least one more surgery in his future, the Fontan (probably Spring/Summer 2013, although it’s really up to his body and when he needs it), the "final" surgery in the 3-stage palliative surgeries used to treat HLHS. And he will need pacemaker maintenance for life. But our lives are so normal right now. When we embarked on this journey, I could never have hoped our lives would be this good. Our sweet fighter has had a rough road to be sure, but God has answered the prayers of so many faithful people who have been praying without ceasing for Bodie and our entire family.

We could not be more blessed to have Bodie in our life. He has taught us so much about strength and determination and willingness to live. And about taking life one day at a time and enjoying the small moments. He loves life. He has no idea life dealt him a bad hand. He was born with half a heart, yes. But twice the spirit. Twice the determination. Twice the love. We love our little man and would walk this journey again in a heartbeat!