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May 15, 2005 at 07:40 AM EDT
(Sorry, multi-post update today!)
Three years ago today our "true" journey into the world of CHD's began. I say "true" journey because we had Olivia who had a small ASD, so we had been the pediatric cardiologist, echo, EKG route, but had been told to take her home, let her grow and not worry about it - so that's what we did. So, please indulge my multi-part update as I reminisce about where we have been as we get ready to jump back in this world again in three weeks.Three years ago I woke up with my healthy 9 day old baby girl. It was a Wednesday. Looking back it is easy to see that she wasn’t a healthy baby girl. But we had been to her doctor on Monday, when she was a week old. She had a clogged tear duct, just like her older sister, and I just wanted Dr. Sullivan to see her anyway as she is a wonderful family friend, too.
When the nurse weighed her we were surprised to see how much weight she had gained in a week. I thought maybe the scale was wrong, and of course it seemed like all she DID was eat, so it didn’t worry me too much. Dr. Sullivan examined her that morning, pronounced her healthy and listened really intently to her heart because of Olivia’s history. She didn’t hear any murmurs. Her heart rate was a little high, but still within normal range. So, I took her home.
The next day, Tuesday, Olivia woke up with a double ear infection. Back to the doctor we went. While there I mentioned to Dr. Sullivan that I knew she had just seen Maddy yesterday, but I was concerned that she was breathing fast. While we were there would she just check her again? Of course she did, this time she said she did hear a slight murmur and she went to get her colleague to check her. He was the doctor who saw Maddy at the hospital after she was born. He also heard the slight murmur and they agreed her breathing was fast, but it could just be her body adjusting to her newborn circulation. We would keep any eye on her, and if I became concerned I was to call.
The next morning was Wednesday, May 15, 2002. I got up early while Maddy was still sleeping. Todd had gone back to teaching for the remainder of the year and I woke Olivia up so her Papaw could come get her to take her to preschool. Maddy and I spent a relaxing morning. She was sleepy and didn’t want to wake up much and was having a hard time latching on to nurse. She really didn’t eat much and fell asleep as soon as we started. I laid her down in her bassinet so I could take a shower while she slept.
When I came out of the bathroom I peeked down in the bassinet to see if she was still sleeping. It was then that I became aware that even while sleeping very deeply, her breathing was very fast. Her chest was rising and falling like she’d been running. I looked at her neck and I could see the pulse pounding there. I tried to rationalize this all away, knowing that babies have faster respiratory and heart rates than adults, but I also knew they should be slower when they were fast asleep.
(continued)
24 May 15, 2005 at 07:38 AM EDT
To ease my worry I decided to count her respirations and take her pulse. I counted her respirations a couple of times, and never counted slower than 84 per minute. Now, I really couldn’t remember what a newborns respiration rate should be while they were sleeping, so that was a little worrisome, but not startling. Then I went to take her pulse. That was the scary thing. I couldn’t count fast enough to take her pulse. I thought I must be doing something wrong. After all, I’m not a nurse, I’d just had a lot of first aid training because it was required to teach special needs preschool. So, I tried again, but it was just beating so quickly that I couldn’t count fast enough.It was just after 8:30 in the morning, so I decided to call Dr. Sullivan once again. I felt silly, I mean, I had just been to see her two days in a row, but I just had this gut feeling that something wasn’t right. I called and spoke with the receptionist and told her what I was seeing. Dr. Sullivan came to the telephone and I kind of sheepishly explained why I was concerned. I apologized for bothering her and told her I was probably over-reacting, acting like a nervous new mom.
She assured me that I wasn’t the “over-reacting type.” She told me she wanted me to take Madalyn down to the emergency room at Children’s Hospital. She told me not to rush, take my time, but she would call ahead and let them know I was coming.
Okay, so here I am home alone and trying not to panic. I called up to the school so I could get a message to Todd what we were doing. I was fine until talking to the secretary and then I just started crying. I think that scared her and she ran and got Todd out of class to come to the phone. I told him not to come home, I was going to have my Dad go down with us and I was sure everything would be fine. I would call him and let him know what they said.
After we hung up, I called my Mom at work and told her, then called my Dad and asked him to come pick us up and take us down there. I woke Madalyn up and took her upstairs to get her dressed. I remember picking her up and holding her close to me as we walked back down the stairs and saying, “Maddy, don’t do this to me. Mommy can’t handle this.” I wasn’t sure what was going on, but I knew something was wrong.
Todd called back to ask me to wait for him, he was coming home. The three of us headed down to the hospital. I just remember praying the whole time we were driving. I just wanted her to be okay.
We got to the emergency room and Dr. Sullivan had called so they were expecting us. The triage nurse came out and listened to her heart. I’ll never forget the look on her face. She pulled us back into a room and started calling for a “trauma” room. Now, I had watched enough “doctor” shows on TV to know THAT wasn’t a good sign!
Before I knew it, Madalyn was laying in one of those infant beds they use. There were doctors and nurses all around. They did an EKG, an echo and a chest x-ray first. It didn’t take anytime at all to get those done. I remember standing beside her and holding her tiny hand as they did the echo and thinking, “This is it, from this point on our lives will never be the same.”
(continued)
23 May 15, 2005 at 07:38 AM EDT
I asked the emergency room doctor what she thought. She said, “We think it is her heart. We have a pediatric cardiologist coming down to look at her.” I asked, “Can you fix it?” and she answered, “I think so.” That was what I wanted to hear. During the drive down, I knew it was her heart. I still didn’t know anything about heart defects, despite Olivia having one, but I was sure it was her heart. My greatest fear had been that we would get down here and they would tell us it was her heart and there was nothing they could do for her.The cardiologist came down and examined Maddy. He said, “She has a heart defect. Do you have a family history of defects?” I replied, “Well, her older sister has one.” If things hadn’t been so bad right then, the reaction of all the medical personnel would have been comical at that time. They all just stopped what they were doing and looked at me like I was crazy! I told them that it was just a small hole, and I couldn’t remember the name of it (what a great heart mom I was!).
Pretty much everything else is a blur. I remember them trying to get IV’s started on her. That was awful! She screamed and screamed. I just wanted to pick her up and run away. I wanted to rewind to that morning when I had a healthy baby girl and we were at home, and she was just mine. She didn’t belong to this world of heart monitors and IV’s and medical people rushing around her. They finally got IV’s started and she had screamed so much she was exhausted and had fallen asleep.
The cardiologist pulled us aside. He drew two pictures on a piece of paper. The first one was the “healthy heart” picture, then he drew another one and started putting holes where there shouldn’t be holes and crossing out areas of the heart that should be there. He told us Madalyn had a severe heart defect called Tricuspid Valve Atresia. She was missing a valve on the right side of her heart, and because of that her right ventricle had not developed so that it was basically useless. In order for her to live, she would have to have a series of three surgeries, and she would need the first one right away. Then he told us when she was older she would have to have a heart transplant!
I think the only thing I really absorbed from that conversation was the word “transplant.” I wanted to scream! I felt sick to my stomach, and to top it all off, my milk had come in. Madalyn hadn’t eaten well that morning, and with all of her screaming my shirt and the front of my pants were now soaked through.
I had to leave. I asked to use a phone and I called my mom at work. I broke down sobbing. I told her I didn’t know what was going on, but it was bad. I told her Madalyn would have to have surgery right away, and she would still need a transplant when she was older.
I came to find out that that morning, Madalyn was in congestive heart failure. She was not “blue” because her pulmonary valve and artery were fully formed, so that was why she didn’t appear symptomatic at birth. Unfortunately, her lungs were being flooded with blood because of the insufficient circulation caused by the missing right ventricle. I later found out her heart rate when we arrived was 250!! No wonder I couldn’t count it – that is 250 beats per minute! Madalyn was admitted to the Pediatric Intensive Care Unit (PICU). We were under a constant barrage of information that we were trying to process, and what it boiled down to, was Madalyn was going to be stabilized and then have surgery the following Monday.
(continued)
22 May 15, 2005 at 07:37 AM EDT
As long as I live I will never forget the emotional trauma of that first day, and the days afterwards. We were just so lucky to take our baby back home again 22 days after that initial emergency room visit. She survived her first surgery, a blood clot forming in her right ventricle, and recovered well enough to go home with us. Four months later we would go through all of this again as she had her second surgery, the Glenn, on October 7. Fortunately that was only a five day stay.And now, here we are, preparing to enter this hospital world again on June 7. The past three years have gone so quickly, I can’t believe it is time to do this again, I’m just looking forward to getting it over with and having my baby home again. We’ve learned a lot in the past three years, too. We’ve learned that we didn’t really like that first cardiologist. All he kept wanting to tell us were the things Madalyn would “never” do. As in, “She’ll never play sports, she’ll never be able to have children, she’ll never function as ‘normal’ children do.” We switched cardiologists and found out that you “never say never” to these heart kids! They will continually surprise you. Madalyn does and will function like a ‘normal’ child. She may never need a heart transplant. Those are not “guarantees” for our heart kids, and who knows what the future of medical technology will bring to them.
Most of all we have learned from and learned to love the incredible network of people that Madalyn has brought into our life. From the surgeons, doctors, nurses and staff at Columbus Children’s Hospital, the parents of other heart children we know “in real life” and “on the net,” the members of our church and how they have rallied around us, and the love and support of strangers. Mostly the love and support of our wonderful family. It is an amazing journey, and one we are going to continue for a long, long time!
Thanks for putting up with my meanderings down memory lane! Lots of love, hugs and prayers to all of you!
Barbara
This is an archive page for 2hearts.
To go to the main site... http://2hearts.org.uk
