CHD awareness month: She woke up with a zipper.

You hear stories in the news all the time about teenagers or even school aged kids suddenly collapsing during a sport or play.  Sometimes, that son or daughter, is spared, sometimes the story ends tragically.

You’ve read Evan’s story – the diagnosis in utero.

You’ve read Ava’s, Ellie’s and Finley’s – diagnosis soon after birth.

Please, meet, Rose.  Daughter to a dear Heart Mom, Mary, who one day had a healthy 8 year old….and then suddenly…

 

Cuddling with my husband on the couch while we watched a favorite movie the night of January 13th, the ambiance suddenly went from totally relaxed to totally tense as we heard footsteps across the tile and a little voice call out.

“Mommy?  Daddy? I feel weird again.”

Our eldest daughter, Rose, who was 8 years old, had been coming out almost every night saying that she was feeling “weird”. There was no other way she could describe it. It was beyond frustrating. We had taken her to all her well check-ups, and she had a clean bill of health. Other than a surgery for taking out her tonsils and adenoids when she was 4 yrs. old, there was nothing to alarm us. Except her repeat performance. Every night for the last month.

We knew there was something going on, but whether it was physical or a need for extra attention. We sent her back to bed with a promise to come check on her like we always did, and as her footsteps receded down the hall, we turned and looked at each other. My chest was so tight it literally hurt. Deep down, my “Mommy Alarm” was telling me that there was something that needed immediate attention- I just didn’t know from whom.

When she came out again, saying she felt weird- again- I took a very deep breath and said,” Can you tell me any other words to describe how you feel? ‘Weird’ doesn’t really tell me anything, Honey.” I suggested that we pray and ask for words. We did. About 2 minutes later, she had the words I will never forget.
                “It feels like butterflies are trying to fly out of a tornado in my chest.”

My heart froze, and I willed myself to be calm so I didn’t scare her. I knew it was something heart related, so I had her sit down on my lap in the other room and took her pulse. It was 45 beats per minute! I told her to go lay down and rest, and when she was out of sight, called the pediatric exchange. When I described what was going on, the nurse told me to hold the line while she got a hold of the dr. When she came back and asked how our daughter was doing, I was taking her pulse. It had lowered to 40 bpm. She told me to not wait for the dr. Just go to the local ER. Perhaps we were missing some beats- sometimes that happens.
                I woke Rose up, and told her we were going to the ER “just to make sure everything was okay.” My husband stayed home with our other three children, who were sleeping, oblivious that our whole world was about to turn upside down.

I had been so thrilled when we found out we were having a baby. More accurately that I was able to carry a baby after two miscarriages. I threatened to miscarry with her, so spent most of my first trimester in a recliner. She was born a strong, very pink baby. With APGAR scores of 8 and 9. Perfectly healthy. I noticed from the start that she snored loudly for a newborn, but was told I was “just a paranoid new parent”.  I couldn’t rest easy with that explaination. She was really hard to nurse. We had to use ice cubes on her tummy to keep her awake to nurse- and it was December! She would latch on, and then jerk and arch her back. She had circles under her eyes, but that was just her “unique coloring”. Still, I couldn’t let it go, and woke up multiple times a night to check her breathing. With the birth of our second daughter, I realized just how loud our first really was breathing. I kept talking to anyone who would listen, and finally a friend’s mother-in-law lent me a pulseoxometer (a machine that goes on the finger and measures heart rate and oxygen saturation) to see if anything was happening while she slept. She called me a couple days later to tell me something was definitely going on with our little girl. Her heart rate was dropping at night and her oxygen was going down to 60%! Within 3 months, we had been to the ENTs, had tests, and had her tonsils and adenoids out. Her breathing quieted and her color returned to a rosy pink. Rose was 4 years old, and NOW was totally healthy- again.

Now, 4 years later, as I drove at 10 pm through our mostly deserted town to the ER in my truck with Rose sitting quietly beside me, I was praying that I was wrong- that I was just being paranoid again.

We walked into the Er, and after giving our info, sat down for all of 2 minutes. The triage nurse called us in, and asked what was going on, I told her about the “butterflies”. She gave me a quick look of concern, and then smiled as my daughter looked at her. I appreciated that she was trying to keep my daughter calm. She put the pulseoxometer on her finger, and immediately looked at me, then led us straight to the room directly across from the nurses’ station. I have learned that it is never a good sign when you are put in that room! They took some blood from Rose and then a nurse rolled an EKG into the room. She put the stickers on Rose’s chest and abdomen, and started reading it. After 30 seconds she tore off the tape and left the room. I smiled at Rose, and suddenly the ER doctor was there- literally 30 seconds after the nurse walked out. He looked at me…

And shattered my world.

“Your daughter has a third degree heart block. We are calling the children’s hospital and seeing if they have a bed for her. She’ll be transferred by ambulance tonight. If it’s a local ambulance available, then you can go with her. If they have to send one, I’m sorry, but she will be transferred alone, and you will have to drive there yourself. It’s about 3 ½ hours away.”

The x-ray machine arrived for a chest x-ray right then, and I was asked to stand outside the room. As I stood there, trying to figure out what was happening, the ER dr. came over and asked if I was alright. I had no idea. I told him that I didn’t understand what was happening. In my mind, I was thinking that heart block was something that only happened to older people who ate too many hamburgers, not 8 yr. old girls! He explained that the disease that she had was an electrical disease. The top and the bottom of the heart didn’t “talk to each other”, so they beat at two different rates. She had two different heartbeats! My head was swimming as I called my husband and tried to explain what was happening. When I got back to her room, she was just sitting in her bed, not saying a word. I knew she was scared, but she was being so brave! She asked me to run home and get her favorite blanket and her Paddington Bear. I was surprised that she wanted me to leave her, but after making sure she was really alright with it, I drove home and grabbed her blanket and bear, and a few things for me, and hurried back, praying I hadn’t missed the ambulance b/c one nurse (who seemed to have a love for the dramatic) warned me that if the ambulance came before I did, they would leave without me. I flew back to the ER, and as I walked in, this same drama nurse stopped me and said, “It’s so good you are back. You almost missed the ambulance. It’s here and…..(as she paused, looking at me for 5 seconds- literally 5 seconds-I stifled the desire to yell at her and smack her at the same time) it’s one of ours so you can go with her.” Relief flooded through me. It was 3 am.


                As she was wheeled out of the hospital room, I snapped a picture of her on my phone. It is a haunting image- the first pictures of a childhood cruelly interrupted by a congenital heart disease we had never even heard of. It’s hard to even look at it without tears. She never cried, just kept searching my face in a silent wait- searching to see if it was something to be scared of or not.


                In the ambulance ride, the EMT was excited about her diagnosis, but trying to be sensitive to our traumatic circumstances. He kept looking at the monitor and finally leaned over and said, “I just have to print out a tape of her heart rhythm for my students. They probably keep telling you how rare this is, huh?” I said yes, though I realized later that I kept hearing it was rare, but didn’t know exactly how rare it was. Later I learned it was I in every 14,000.

            We arrived at the children’s hospital at 6 am and were taken straight to the pediatric intensive care unit (PICU). As we waited while the EMT talked to the admitting doctor, I saw him look at me sideways as he told him, “I was given orders to work on her if her heart rate went into the 30s consistently.” I just looked at him.  She had been dipping into the 30s every once in a while. I didn’t’ think much about it because he didn’t seem concerned, but I realized that when he was checking the monitors, he was also preparing to work on her if her heart rate didn’t come back up. A shiver ran through me. When we got to the PICU, I looked around at the other kids there. They were covered in wires, had tubes coming out of them, stuffed animals everywhere, but most of all, they were just lying there. They were so sick, and all I could do was look at my precious 8 yr. old and think, What is going on? We don’t belong here! She’s still the same child as yesterday, but…..This has to be a mistake. These kids are so sick, and she isn’t. But if she isn’t, why are we here? I just couldn’t get my mind to stop, and sat in the oh-so-comfy chair next to her bed, trying to stay awake as a myriad of doctors came parading through to see her.

Tests were ordered- echocardiograms, blood, I don’t even know what else. I gave family history over and over, and when rounds were made, I was told I had that all parents had to leave for the privacy of the patients. I had to tell her I would be right back, and turn and walk out the door, leaving her there. So small. So scared.  I called our family to let them know what was happening and that she seemed fine except for her heart beat was really slow- no, I didn’t understand exactly. I had family tracing down every heart issue anyone had and faxing any and every record to the hospital to see if there was any connection genetically. I answered so many questions- Yes, she is breathing on her own. No she wasn’t sick. I’d call when I knew more. I had to call a friend at 6:30 am and ask if she could bring some formula to my husband at home because since I was exclusively nursing our baby, there wasn’t any at home. I called and asked my mother-in-law if she could get the kids so my husband could try and get some sleep.

Things at work were rough, and he hadn’t slept for two nights before this happened. I was worried about him. Worried about my other kids who were waking up and wondering where Mommy and Rose were, and how there was no answer about when we would be home. I met with a social worker who explained to me that her job was to take care of me- did I have money for food? Did I need a change of clothes? I had come with only the clothes on my back and my purse. Later that day there was a lady who was from Family Services who came by to give me a green tote bag with a note pad and pen, a small bag of toiletries. I never thought a toothbrush and lotion could mean so much to me. I tried to grab some cat naps in the chair by Rose’s bed, but it was almost impossible, save for the fact that my body just couldn’t take any more. Every time I opened my eyes, there was a new group of doctors there, and they all kept printing out the EKG tape of Rose’s heartbeat. I began to think that they were calling their doctor-friends to come and see her (Hey! You will never guess what we have here! Come on by and see this kid with her amazingly rare heart!). The nurse told me later that we had been seen by over 60 doctors that first day alone.
         

We were moved to a step-down unit later that first day, and she went through more tests. I remember hearing that they were really excited that her heart was healthy- except for this one issues. She was a baffling case because it was so healthy. The next day, Thursday, we met our cardiologist/electrophysiologist, who drew a picture of a heart with a line through the middle of it- horizontally. She explained that Rose’s heart was strong, but the signal from the top of the heart that tells the bottom of the heart to beat right after it does was blocked. Since the bottom wasn’t getting the signal to beat, it was on a “back-up generator” so to speak. So, the top of her heart is beating away at the merry tempo of about 80 bpm, but the bottom is going, “Hello? Anyone there? When do I let this blood out?!?”, and since there is no answer, it decided to let it out at the rate of about 45 bpm in the daytime, 39 at night. So she has two heart beats, and that’s why she feels the butterflies in her chest. Rose was scheduled for a pacemaker implantation surgery the following Tuesday (we arrived there on Wed., so it would have been in 6 days) but because of her “healthy heart” we were discharged that Friday! Just like that, we were being sent home! I couldn’t believe it.
         

After we got home, we had to have our other three children tested. We were so grateful to God that they all came back clear! Two weeks later, we were back at the children’s hospital for a follow up. This was actually the first time I heard the doctor use the word “disease”. Our daughter has a heart disease. What she actually said is that the risk of this particular heart disease, although really small, was that one night she could go to sleep and never wake up. My heart froze. If she hadn’t been able to tell us what was going on, if she hadn’t had the right words to explain how she was feeling, I could have walked in one morning, and she would be gone….That scenario started running through my mind and I had to consciously make it stop. A new kind of fear moved into my life that moment, and didn’t leave for 6 months. We had to make a choice whether to have her paced right away, which was my first gut reaction, or to wait and try to give her the most “normal” life we could. After a lot of discussion, prayer, tears, and soul searching, we decided to try and at least let her finish out the school year.

The next 6 months were a blur of doctors’ visits, halter monitors, trips to the ER for chest pain to make sure she wasn’t having a heart attack (an 8 yr. old having a heart attack. I never thought of that), having her on oxygen b/ her sats. were dipping into the 80s, blood tests and more blood tests for her and for me to see if I had antibodies that may have caused her disease, constantly checking her pulse, her blood pressure (which I had to learn to do with a stethoscope), and checking her almost every hour of the night. Literally, almost every hour. It was like when she was a newborn all over again, except I KNEW what was wrong now. I would tiptoe into her room and lay my hand on her chest, counting the thud(1)….thud(2)….Thud(3)….that was her heart beat. You could literally feel it slamming against her chest.


             I honestly don’t remember much except how it relates to how Rose’s heart disease affected out family. I took our second daughter, who was in Kindergarten, out to brunch to try and explain what was going on with Rose’s heart. She looked up at me over her hot chocolate and said, “Mommy, can Rose die?” What an awful question for a child to have on their hearts, and I knew she had been wondering about it ever since she heard her sister’s heart was “broken”. After few moments and a lot of swallowing, all I could say was that we were doing everything we could to make her heart better.


                Her pacemaker placement was scheduled for late that August. As the spring wound down and summer neared, we were seeing signs that things were getting worse, and quickly. She couldn’t keep up with her class on a wildflower hike, She couldn’t keep up in PE. The ER staff knew us by first name. When I walked in the door with her, they’d immediately bring out a wheelchair and take her back.


                On June 9th, while we were sitting at the table making plans for summer, the phone rang. The voice on the other end of the phone said that all the doctors had been conferencing, and it was time for her pacemaker. They didn’t want to wait any longer. We frantically made arrangements for our other children to stay with Grandma and Grandpa, called family and friends, and packed our bags. It was going to be a three day trip- one day down and a pre-op apt., her surgery and an overnight stay, and discharged the next day.


                That night, as I made my routine heart check, Rose wasn’t asleep. She was trying to rest, but she was terrified. So was I. I held her and rocked her just like when she was a baby, and the torturous thoughts of whether or not I’d get to hold her began to strangle my heart with fear. I did my best to stay calm and not burst into tears because I didn’t want her to know how afraid I was. She finally dozed off, and I laid her down, kissing her face. I kissed the other 3 children as well, and suddenly realized just how much cooler her skin was than their skin.


                The next day we tried to make as light of the situation as we could. Three and a half hours of driving, with a few stops for fun, made us glad to get out of the car for her pre-op appointment. It went great. We headed back to the hotel, and ordered pizza for an early supper. She couldn’t eat after 7 pm but she could have apple juice, so we made a run to a store around the corner and bought some, along with a few games and a pair of heart socks that she fell in love with. Hearts had become somewhat special to us. After eating the pizza, we watched TV and then tried to get some sleep, knowing full well we wouldn’t get any. I laid down with her until I heard her breathing slow, and laid my hand on her chest. Thud(1)….Thud(2)….Thud(3)….

             We woke up early, and set off for the hospital, which was only about 10 mins, away. I can still remember vividly the dress she was wearing along with her pink socks, and how she clutched her bear as she tried to give a brave smile. We got to the hospital and walked into registration. In a short time, she was changed into her gown and ready to go. They called her early, and at about 10:30am we kissed her and told her we’d see her soon. I wrestled with the urge to take a picture of her chest- her perfect, unscarred chest. I didn’t do it. They wheeled her into the elevator, where she gave a brave smile as she clutched her Paddington Bear beside her. Then the elevator doors closed.

           We went to the family waiting lounge where we were issued a pager to notify us when the surgery was done. We went to the cafeteria, and then back to the family waiting lounge, where we ran into a family we knew from home- small world! My husband went outside and read magazines while I chatted with the mom. Our girls had been in class together in the 1st grade. Before we knew it they were telling us that Rose was coming out of the surgery and the cardiologist was coming to confer with us. The cardiologist said that things went well with one hitch- her chest wall was too thin to accommodate a two-lead pacemaker, so for the time being there was only one to make the bottom of her heart beat fast enough to keep her safe. Her heart would not stop in her sleep. She would have to have surgery again when she was a teenager to put the second lead in. It was really disappointing to hear this, but a small thing in the scheme of things. We went to recovery to be with her when she woke up. Watching her wake up was one of the hardest things to endure. I wanted so badly to hold her, but I couldn’t because of the IV lines and her arm was in a sling. A lady wheeled a large harp into the recovery room and began to play. The music was so beautiful, and it was having an obvious affect on the children recovering. Rose relaxed with music. I could have hugged the lady. I was so grateful for anything anyone did for her. My husband and I noticed her chest thudding, and mentioned it to the nurse practitioner, who was the specialist in pediatric pacemakers. She told us that because Rose’s heart had been working so strong and hard for a while, that it beat hard naturally. It was okay for the time being, but should subside.


After she was moved to the short stay floor, she was in tremendous pain. She was given morphine, which made her sick to her stomach. One of the nurses on the floor went toe-to-toe with a doctor about the meds. He was telling her morphine wasn’t making Rose sick, and she informed him that she didn’t’ care about hwo much schooling he had, she worked with kids in recovery every day and she knew that it DID, so order something else! I love that nurse. As the evening wore on, Rose began to have hiccups, but these were so forceful that the bed would shake with her. We were really uneasy, and had the NP called again. She was already on her way to check and make sure that the pacemaker was working. When we pointed out our concerns about the “hiccups”, which of course weren’t happening at that moment, she stayed until she saw them. She lowered the voltage of the pacemaker, and that seemed to work. She surmised that because Rose was leaner than the average child, it seemed that the voltage wasn’t blocked by layers of fat and so it was pacing the diaphragm as well as the heart. After seeing that all was now working fine, she went on her way, telling us to call if anything else didn’t seem right. NOTHING seemed right. Six months ago, everyone in our family was fine, and now our daughter had a machine making her heart work right! I just smiled. I left to pick up some prescriptions from the hosp. pharmacy, and my husband stayed with Rose. When I walked back into the unit, every nurse at the nurses’ station stopped working and looked at me. My heart stopped. That is never a good thing.  Our nurse looked around and slowly stood up. She told me that after I left, Rose was sick to her stomach again. My husband was holding her and helping her, and looked up at the monitor as she was vomiting. Her heart rate dropped from the 80s to the 50s, which is where it had been before the pacemaker placement. Deb, the NP came back immediately, and told me that a chest x-ray was being done. She told me that she was 99% sure the pacemaker lead had detached from Rose’s heart. That meant that she would have to have surgery again. Immediately. The x-ray confirmed it, and we were packing everything up and making phone calls to family to inform them that she was going back into surgery. When we told Rose that the lead came loose and she had to have surgery again, all she quietly said was, “Okay.” I didn’t handle it with quite that much grace. I wanted to crumple up and bawl, but she was being so brave that I swallowed all my tears and tried to look calm for her sake. The NP and others kept telling us how rare this was. They were nervous. I told the NP that we believe that God is in control of everything, and we knew this wasn’t their fault. All the nurses at the nurses’ station stopped and gave us encouraging smiles as we walked quickly by on our way to the cath lab for surgery #2. 


       Because it was after hours, we had to update a new team of anesthesiologists. We were able to walk with Rose all the way to the cath lab before we kissed her and said, “See you soon, Baby. We love you.” The surgeons told us that this time the surgery should only be about 1 1/2 -2 hrs. instead of 3-4 hrs. like before, and that we would see them come out of the same doors with her.  We could then walk back to the recovery with her. There was a family waiting lounge across the way, and we waited there. It was 8:45pm.

       We walked over to the other side of the hosp. and found a small cafe, where we bought a hot chocolate and some fruit knowing that we needed to eat something, although we weren’t hungry at all. We wandered back to the waiting lounge and sat at the end, where we made a few phone calls to update some friends. There were other people there now, and they were laughing and talking quietly amongst themselves. They were happy, but respectful, and I was glad someone could enjoy being there.


About 10:15 pm I hung up the phone after talking with a friend, and looked up. I was startled to see two surgeons walking quickly towards us- without our daughter. Our hearts froze. Hands down the worst moment in my life. I knew something was wrong. One was our cardiologist, and the other was a doctor we didn’t know. We nicknamed him “Dr. Jolly”, because he seemed so thrilled at the prospect of operating on our daughter. We later learned that they grabbed him as he was about to leave because they needed him to assist. He was dressed in a torn white t-shirt and jeans, and no looking the most professional at that particular moment. My husband was giving him dagger looks as the cardiologist told us that first of all, she was ok. I remember thinking, “If she was ok, why the h— are you out here talking to us instead of bring our daughter out?” She went on to say that in the two plus hours since the x-ray, the lead had moved. It had pierced Rose’s heart, pierced her diaphragm, and was up against the outer wall of her chest. They needed to open her abdomen, poss. Open (crack) her chest. They needed to move her to a bigger OR across the hospital for emergency surgery and needed our consent. We gave verbal consent, and they left quickly to move her. While the surgeons were talking to us, the lounge went silent. Everyone knew something was wrong with our child. Some of them had seen her go by on the hospital bed when we first walked by. Now they all sat silently as the surgeons walked away and we slowly turned, sank into the chairs we had been sitting in, and I began to cry. After a minute or two, I got up and went to call our family. While I was gone, the second surgeon (Dr. Jolly) came back out with the papers and my husband signed them. He said that he though our cardiologist must have chewed him out because he was much more subdued and respectful. My husband still gave him dagger looks as he handed back the paperwork.  Soon after, our NP came and took us to a waiting area outside the cardiovascular intensive care unit (CVICU). She was visibly upset and concerned, and told us this just doesn’t happen. She showed us the elevators where Rose would be brought up to the floor, and told us it would be about 3-4 hrs. before we could see our daughter. Then she left to help with the surgery.

       I cannot put into words just how much we learned the real meaning of “praying without ceasing” and pleading to God to be given our daughter back. Thoughts of what life would be like without her and how we would tell the other children what happened flooded my mind. I wanted to hold her so badly. So badly. Sleep was out of the question although we were absolutely exhausted in every way. My phone was low, so we turned it off. It is a strange feeling when although she is both of ours daughter, we had to deal with this on an individual level as well as together. I kept remembering when we dedicated her. She was 8 mths. old. We promised her to the Lord. Although I meant every word of the dedication, I never dreamed that I would have to face the reality of how sincere I was head on. I had to give her back to God, and let go. It was agonizing, and so eye-opening as I begged God and searched my soul.

        At 12:15am I looked at my watch, and then looked up to see her cardiologist standing in front of us. She had a smile on her face as she told us the surgery went “perfect”. They didn’t have to open the chest completely, although they did have to cut part of her sternum to stitch the heart and attach the new pacemaker, which was a dual-lead and was now in the abdomen instead of up by her shoulder. This was better b/c instead of a small screw into the heart, the leads were actually sutured onto the heart, and she would not have to have another surgery until it was time to replace the battery- about 10 yrs. This is the silver lining and the blessing in this 3rd surgery. We literally all let out a sigh together, and it took a few breaths to get my heart back to normal. She said it would be at least another hour and a half before we could see her. We decided that my husband should go back to the hotel, which wasn’t far, and rest because he had to drive back home later that day. It was our youngest daughter’s birthday. I called our families to tell them the news, and then sat back down to wait for Rose. At 1:30am they brought her up to the CVICU. The surgeon (still another one) and the anesthesiologists were all smiling as they briefed me on the surgery. The surgeon was so compassionate. He took me into the CVICU and let me to about 20 ft. from Rose’s room, just so I could see her and see she was “OK”. I couldn’t go nearer b/c she wasn’t cleaned up from surgery yet. He asked me (begged, really) to wait about 20 more min. outside the unit. Finally, one of the nurses brought me into see her. She was still sedated. She had a chest tube in, and was on a ventilator. I couldn’t see her incision sites. She was so beautiful lying there. There was no thudding of the chest, and her skin was starting to have a warm rosy glow despite all she had been through. I actually thought she was overheated because she was so pink. I didn’t realize until later when I was putting school pictures together just how pale she had become. It’s like the frog in the boiling water- She had become so pale so gradually that we didn’t realize what was happening.


        The nurses urged me to go and see where they had arranged for me to stay for the night since she would be kept sedated. I could come back and sit with her for a little bit after that. When I returned they were calling for the doctor because she had shocked them all and was waking up, trying to pull out her breathing tube! The nurse and I held her hands away from her mouth as we waited for the doc, and marveled at how strong a sedated 8 1/2 yr. old could be after 3 surgeries in less than 14 hrs. They took out the breathing tube, and I started to feel hot and sweaty, and without even looking over, the nurse asked if I had to sit down.  Apparently this wasn’t all that uncommon with parents. The nurse brought me some ice water, and urged me to go and sleep. I decided to listen to her. I finally fell into a fitful sleep about 2:30am. 


        I woke up and went down to be with Rose at 7am. She was in pain, and very weak, but otherwise doing well. My husband arrived shortly after I did. When the doctors made their rounds and went through her case with the residents and fellows, they all were amazed that there was no internal bleeding from the heart or diaphragm. They kept repeating, “No bleeding? No Bleeding,” and shaking their heads. Prayer is awesome. Mark left about 10 am to get me some brunch, and when he came back, he stayed with her while I ate. There was no food allowed on the floor since the children couldn’t eat. Later that morning they transferred her to the interim ICU (a step down from the CVICU). My husband had to leave that day. At least one of us would be there for our youngest daughter’s third birthday. (I called later, and found out that she had a wonderful birthday with her grandparents, brother, and sister, and an aunt and cousins who came up and brought supper. She still hasn’t forgotten that I wasn’t there for her birthday, though. It still hurts.) The first night, we shared the room with a 5 1/2 month old baby. The next day the crib was taken out and a beautiful little 9 yr. old girl was brought in. God had a delightful surprise for us, because the little girl and her mother became quick friends with us. 


        We were able to come home Tues. afternoon. What had been an overnight stay in the hospital turned into 5 days. It was so hard to say goodbye to our new friends. We had only known them for 4 days, but we know we’ll be life-long friends. Home had never looked so beautiful.

I went to my mother-in-law’s to get my children, and my 14 month old screamed when I held him. He wanted nothing to do with me. I had to call my husband to come and get him. I expected it, but it still broke my heart. He wouldn’t come near me for the first day or so, which I also expected, and then he wouldn’t let go of me. He still gets terribly upset when I leave to do an errand, so we’re working on separation anxiety all over again. Our second daughter, who was 6, had a fever before we came home. She had to be really brave, too, because she couldn’t come home from Grandma’s and Grandpa’s until Thurs. It was so good to finally have our whole family together. It had been 8 days.


Later that month, I read the surgeons’ reports about the surgery. It made me queasy with fear to realize again how close this was, and I read a few details that I hadn’t heard before- like how the lead missed a major artery by less than .5 cm. I have copies of the x-rays, and can see how it all went, but still can’t quite wrap my mind around it all sometimes.


                We go back for Rose’s clinic visits every 6 months, where they interrogate her pacemaker by putting a magnet over it. She is 11 now, and it still makes her body jump like the giant hiccups – just like it did after her surgery. Every time we walk up to the front of the hospital, we slow our steps just a bit. I can’t help but remember how life changed there, and have to fight off a surge of conflicting emotions. I am so grateful that we found her CHD before something tragic happened, like so many of the athletes that collapse while playing high school sports, but there is always a surge of grief for what we lost- what Rose lost- a normal childhood.


                The night before Rose’s ER diagnosis, I was on the phone with my mom and told her, “I don’t know how moms with special needs children do it. I don’t think I could. I am so grateful that all my children are healthy.” Those words are haunting now. I have learned the hard way that moms with special needs children are just moms who have learned to tap into that deepest of instincts to do whatever we have to do for our children. We don’t have some sort of different instinct than other moms. We have just learned to trust it more. For years I had that nagging “paranoid” feeling that turned out to be right.


                I recently had someone we have known for years say to me, “Aren’t you glad it’s all over? Like, aren’t you just glad to put it all behind you now?” I was speechless, not because I didn’t have anything to say to her, but because I felt like she had just kicked me in the gut and there was no wind left. All over? Rose will have a machine helping her heart beat for the rest of her life, barring a miracle. She will have to have surgeries to replace the battery, or any broken leads, for the rest of her life. She will have a cardiologist who knows her on a first name basis her whole life. Decisions will be made based upon how close we are to a children’s hospital or how close she is to a good heart center when she is older. There are certain things she can not do, certain sports she can’t play, certain toys that aren’t allowed in our house because they will interfere with her pacemaker. When we were in the midst of her late diagnosis, we didn’t know ANYONE who understood. We didn’t know children could have pacemakers. We didn’t know that a child could look so healthy and have a heart disease. Since then, we have found a whole community of heart moms and dads that do “get it”. Even in that community, though, we are a bit of an anomaly. We recently received a set of records that may suggest that Rose wasn’t born with complete heart block. Whether she had 1st of 2nd degree, we don’t know. We don’t know when she developed her 3rd degree heart block. What we do know, is that regardless, we are loved and accepted in our heart community.


                The hardest part of this whole journey is seeing how it affected Rose. After her diagnosis, she became a very nervous child. She was brave most of the time, but there were moments when she would cry and ask “why me?” After her 3 surgeries in one day, she became very clingy, and then was diagnosed with Post Traumatic Stress Disorder. As she got used to her new rhythm and how it felt, she had no idea that her heart was supposed to speed up when she was scared, or how the heart reacted to other emotions like ( anxiety, excitement, etc.) and so she would freak out about it. People didn’t understand why she would have meltdowns. She didn’t very often, truthfully. We lost quite a few friends because they didn’t know how to deal with her “condition”, even though there was nothing to “deal” with. All they had to do was accept her.  We were excluded from get-togethers, and our circle became very small after the novelty of her condition wore off. It seemed that it was too hard for people to be reminded that anything can happen to a child at any time. I had a hard time seeing anything except through the filter of how it related to the CHD that had so cruelly reared its ugly head in our family. After some counseling, it has been downgraded to generalized anxiety, and now pretty much gone,  but every year, twice a year, just before we go to her clinic visit, she has a really hard time. I do to. I haven’t been diagnosed with PTSD or anything like that, but certain smells, certain sounds, certain situations that evoke emotions I felt that June take me right back to that moment when the doctors came out of the OR without our daughter, and my whole world stopped. I can’t breathe, I can’t focus, and I have to take a few moments to remind myself that she is doing great now, and I can’t deal with the “what ifs”.  So I hold all my children more. I love and appreciate all the little moments we have. I take nothing for granted. I beg moms to get a pulseoxometer test on their newborns. I tell parents to take their child’s pulse randomly just to know what it is so they can tell if it changes dramatically. And I tell our story whenever I can to let people know that heart disease isn’t just for old people, and just because your child was “healthy” didn’t mean that nothing can be wrong, so don’t ignore your gut feelings.


        About 6 months before our life changed in the ER, I mentioned my daughter’s heart to the pediatrician because I thought something was wrong with our other daughter’s heart. Her heart rate seemed to slow and speed up randomly, while Rose’s was steady all the time. He listened to Rose and had her jump up and down, and then said, “Well, if it didn’t accelerate it would be heart block, but her’s does, so just watch it and see if she starts having symptoms.” I didn’t know enough to ask for an EKG. How many times I wish that I had asked! I didn’t know anything about CHD except that a cousin’s baby was born with half of a heart and had to have 3 surgeries to repair it. I had no idea how far reaching it was or that it affected older children, too.


       I can’t change anything for Rose. There is no cure- yet.  If you saw her today, and didn’t know our story, you would have no idea that anything was wrong. If I can help one family through our story, and there is one less child who collapses on a field or in a hallway from a CHD no one knew that they had, then Rose will tell you it is worth it. She will also tell you that although she is only 11 years old, it is her passion to educate people about Congenital Heart Defects/Diseases.