At 2 weeks old, I was trying to adjust to motherhood, when Jessi started running a low grade fever. I did what most first time mothers do, panicked and took her to her pediatrician. Upon her examination, they told me what I already knew, she had a very distinguished heart murmur. So, they tested her oxygen level and discovered it was unusually low and she needed to be rushed up to Primary Children's Hospital in an ambulance. But some good news, no more fever. I think it's that moment when I subconsciously started burying the scary and painful memories, because it's hard for me to remember the next part. But some of it is coming back. Like how they had to lay her naked body on the cold metal table to examine her while she was SCREEEAAAMING. Then came all the blood tests, then the attempts to put an IV into her teeny tiny hand veins. And after a full hour of poking her, with no success, they ended up putting it in her head. And then came the worst, the spinal tap. Honestly, as I sit here with tears running down my face, I cannot think or talk about that part. It was too hard to sit there and watch her get hurt and I couldn't pick her up or comfort her or do anything but watch. So let's move on. I can't remember what happened next, but for some reason they moved us up to the 2nd floor and checked us in. I really can't remember, nor do I want to, what happened on the 2nd floor, other than holding her hand while she was in the crib. And getting the results of her tests. She had a VSD (Ventricular Septal Defect), which is basically a hole, and a sub-aortic stenosis. When the aortic valve opens, red blood flows from the left ventricle to the aorta. Stenosis (narrowing) of the aortic valve makes it hard for the heart to pump blood to the body. Her narrowing wasn't too bad, yet, but it would eventually need to be repaired because it was closing off. She would need to be seen regularly every month, and would need to take medication. I felt numb and cold, shocked. I cried and cried and blamed myself, wondering what I did to make her have such a defect. I felt like a failure who needed to be punished because I didn't grow her right. And above all, I was terrified. I still think it's my fault, although doctors have reassured me over and over again that it's a defect, nothing I did caused it. Her routine check-up at PCMC in May, found that the stenosis needed to be repaired and they were going to patch the VSD while they were in there. Poor Dr. Shaddy had to witness me falling apart, again. How could my precious, innocent daughter of God have to go through such a major surgery? Why didn't the Lord hear and answer my prayers? It wasn't fair! Her perfect skin was going to be permanently scarred for life. Why? Why? WHY??? Was I going to lose her? (Little did I know that the Lord did hear me, and was molding me into who I am today. I tend to learn the hard way.) I closed my mind as Dr.Shaddy explained the procedure of how it was done. All I heard was "cracking her chest", and I mentally checked out. The date was set for June 2, 2000...I think it was only about 3 days away from when we got that news. Which was probably good because I didn't really have a lot of time to sit and stew over it. You always imagine the worst. During that time I was given information about what would happen, by nurses. And we had good friends in the ward who had a son, although he was 14 years old, just have open-heart surgery with the same surgeon, Dr. Hawkins, who gave us some pointers and helpful advice. And our ward did a fast for her the day of the surgery.
She couldn't have anything to eat or drink for 12 hours, so you can imagine how the morning of her surgery went. She was hungry, and very cranky...and I don't blame her, if only she knew what was coming next! Dr. Hawkins came in to talk to us before they took her in. I don't remember a blasted thing he said, other than, "In all my years as a surgeon, I've never done this procedure on such a small child." It was that point when I seriously thought I was going to lose my daughter. He explained that the opening he had to work on was the size of his pinky finger tip. And the area he was working in, was the same area where the "natural" pacemaker of the heart (sinus node) is. The sinus node is a small mass of special cells in the top of the right atrium of the heart. It produces the electrical impulse that goes to the left atrium and travels down to reach the ventricular muscle. These impulses cause the heart to contract or "beat". Anyway, he said that because he can't see the cells, he would try his best not to bother them. But there was a small chance that they may get bumped and the natural rhythm of her heart may not come back, and an artificial pacemaker may be needed. Next came the anesthesiologist. If ever a doctor has earned his money, these two people definitely did! My daughter's life was in their hands, and I had to step back and let them. I couldn't protect her anymore, and it nearly killed me.
That night, Bob went home to sleep, because the ICU guest rooms are very small...only big enough to hold a twin size bed. I actually started getting claustrophobic in it! Then early the next morning, I awoke to a women screaming, moaning "My baby is gone! No, no, no!!! He can't be gone!" I quickly got up and headed straight to Jessica in the ICU. Along the way, I passed a Samoan family in the next room, sobbing with the woman. A doctor was in there telling her family that she needs to take some sedatives to rest and that it would help her out. My blood went cold and my heart dropped. On my way to Jessica's room, I passed a room with more Samoans just outside the door of a room, and in that room, laid a little boy, who I believe was on a breathing machine. The quick glance I got, I still remember today. He looked so peaceful. And I will never forget the screaming and moaning of his mother. When I made it to Jessi's room, there she was, peacefully sleeping, with bright pink cheeks, and all I could think was, "Thank you, Lord!!!" Then I started having a panic attack. I couldn't be alone in that hospital! Bob came when he could. Family called regularly, and notes, flowers and gifts were sent. After 5 days, Jessica's natural heart rhythm still had not returned. She was about as active as any normal 6 month old, and didn't want to stay in bed anymore. She had a temporary artificial pacemaker outside of her belly with wires that were hooked inside her body. We had to keep a Onesie on her so that she wouldn't pull those wires out, and the risk was just too high to wait any longer for her rhythm to come back. So, the decision was made to implant a pacemaker into the side of her tummy. I wasn't thrilled, but I was also growing tired of the hospital. And there was still a chance that her own rhythm could still come back. Two days later, she went home.
Jessica recovered perfectly and grew just as any normal little girl should. She had regular 3 month check ups, that later turned into 6 months, then annual. Despite the scars, you could never tell anything different about her. We started playing with the idea of potty training, a week before her 2nd birthday. One day I was so proud of her for actually sitting on the "big" toilet, at least trying, when she suddenly slumped over and fell off the toilet. She got up and cried, and I thought she had just lost her balance or was trying to get off. Then a few hours later, she was running down the hall and fell. Again, I thought, "What in the world, Jess? Why are you so clumsy today?" The last straw was when I was at work, I worked in Dimple Dell Recreation's day care, so I had her with me. We were about to close up when she came running to me, crying. I couldn't figure out why, then her eyes rolled back and she went limp for about 5 seconds. I freaked out and called PCMC, who told me to immediately take her to the emergency room. They did all sorts of tests on her, listened to her heart, and everything seemed fine. They were puzzled. The last resort was to just have cardiology come down and double check her pacemaker. Trish came down, hooked her up, and instantly found the problem. So, off to x-rays she went. They found that one of her leads (a wire from the pacemaker, hooked to her heart) was faltering out. They explained that because she was an active toddler, the wire must have gotten bent so many times and it was just about ready to break off. Depending on the way she moved or situated her body, it would falter out and not work until she moved her body in a different position. When they did the tests, she must have been in a good position because it happened to be working at that time. They told me she would need emergency surgery, but couldn't get her in until the next morning. So, we found ourselves back in the ICU at Primary Children's where they hooked her up to an external pacemaker machine that pounded so hard, it shook her whole body. You could tell by looking at her, she was anything but comfortable. She wanted to go home, she was hungry (she couldn't eat anything until after surgery), and couldn't understand what was going on. As time wore on, she became more and more agitated, so they decided to give her Versed, which typically is supposed to calm and relax. But with her, it did the exact opposite. She began to get restless, began to cry and want me to hold her, but when I did, she started hitting me and screaming and wanted to get down. So I would put her down and she would thrash around and scream for me again to hold her again...it went in that cycle until I screamed for a nurse to ask her what the heck she gave my baby! Before I knew it, there were 5 nurses swarming around trying to control her. They told me that she was having a reverse reaction to the medicine and they were going to give her something to counter-act it. I had to lock myself in the bathroom until the medicine got out of her system. I fell to my knees and begged for courage and strength to make it through this, because I couldn't do it anymore. My heart was broken into a million pieces, again, because I couldn't help her. But the Lord heard me, or rather I let Him in, and I immediately calmed down and felt at peace. When I got back to her, she was calmed, and let me rock her in the chair. The nurses put a warning on her charts that she is NEVER allowed Versed again! By this time, her veins were big enough to put leads/wires through her veins to her heart, so they moved her pace maker from her tummy, to her left chest. Again, she made it through the surgery with flying colors, and was back home within a couple of days, right on her 2nd birthday. Needless to say, the fall off the toilet didn't help her desire to be potty trained. It was quite some time before she ever sat on the "big" toilet again.
Jessica continued to do great, and kept up with her annual check ups and monthly phone pacemaker check ups. This little device is quite impressive, I have to admit, and I'm sure I don't even know the half of what it can do! With this particular model, she had to put on bracelets that had wires snapped on and connect to the little box. Then she had a round monitor, that kind of looked like a computer mouse, that we had to put over her pacemaker. We would call a number, and it would dial up and make noises like a fax machine. We had a hard time with this part because she needed to be really still in order for the machine to pick everything up, and she would always dance or bounce to the rhythm of the noises the machine would make.
We went four more years with no incidents before her battery needed to be replaced. It was in May, she was 6 years old and in kindergarten. They tell me that changing a battery is an out patient procedure, however, I have yet to experience an out patient procedure...but I am dreaming of the day. Within 4 years, her pacemaker was now outdated, and they were just going to put in a whole new one instead of just a battery. It was still a simple procedure, but she needed to stay over night. By this time, I had Logen, who was 4, and Sawyer who just barely turned 2. So, it was a little more difficult to be away from home. I had to keep telling myself that this would be like a nice little vacation or get-a-way with Jessi, so I could muster up the strength to go through with another surgery. Other than eating too quickly after surgery and throwing everything up, Jessi did great. She loved the attention she got from family and friends. They let her keep her old pacemaker, and to this day, she loves showing it off!
We went four more years with no incidents before her battery needed to be replaced. It was in May, she was 6 years old and in kindergarten. They tell me that changing a battery is an out patient procedure, however, I have yet to experience an out patient procedure...but I am dreaming of the day. Within 4 years, her pacemaker was now outdated, and they were just going to put in a whole new one instead of just a battery. It was still a simple procedure, but she needed to stay over night. By this time, I had Logen, who was 4, and Sawyer who just barely turned 2. So, it was a little more difficult to be away from home. I had to keep telling myself that this would be like a nice little vacation or get-a-way with Jessi, so I could muster up the strength to go through with another surgery. Other than eating too quickly after surgery and throwing everything up, Jessi did great. She loved the attention she got from family and friends. They let her keep her old pacemaker, and to this day, she loves showing it off!
Time flew by, and we ended up moving to Eagle Mountain. Jessica started 2nd grade and actually got up in front of her class to show and tell them about her pacemaker. We want everyone to be aware, and for her to know that it's not something she should be embarrassed about, but be proud of. She was beginning to come out of her shell a little...at least she didn't start this school year hiding under her desk. But she was still very timid, a great quality she gets from me. One day during recess, she was on the monkey bars and a kid got on behind her, and yanked her off. She fell, and of course, landed right on her chest, hitting her pacemaker. From her 8 year old words, she told me that it hurt her so bad, that she couldn't even move. She began to scream and cry, as the bell rang to go back inside, so no one heard or saw her laying there on the ground. She said she then crawled to her door and knocked on the door to get help. If you know me, you know how passionate I get with the welfare of my children. So this little incident really boiled my blood. The next day I met with the vice-principal and asked him where in the world his recess aides were, and why they didn't see a little girl on the ground screaming and crying! He told me that they are very busy and their attention can't be on all the kids every single second. I informed him that there were no aides out there, for Jessi to even see. And even though they are not Super Women, they should at least be able to see and hear a little girl screaming or laying on the ground. What if she passed out or hit her head, and needed CPR? She would have died if that were the case! Then he would have a hefty law suit going on. He then threw at me, "well, then maybe she shouldn't be allowed on the playground if she has such 'special needs'!" I gave him a look of "oh no you didn't!!!". I told him I would gladly get a letter from each and everyone of her doctors who would gladly back me up in saying that Jessica is a perfectly normal little girl with absolutely no reason to be banned from the playground. Just before I stomped out of the office, I told him that he needs to tell his aides and teachers that they need to either fulfill their duties and be on the playground or step it up in supervising those children. Any child could have fallen and gotten hurt, it didn't matter if happened to be one with a pacemaker. But unfortunately, that was not the last hit she gave her poor pacemaker. She was riding her bike one day, and fell over something, with the handle bar jabbing it. And the last blow was on a February afternoon. Bob and I were upstairs when we heard a huge bang, and Jessi screaming. Come to find out, she fell asleep on the couch, and rolled off, landing on her chest. She was complaining about her head; she told us she hit her head pretty hard. And for the next few days, she kept complaining about getting dizzy. I called her pediatrician and she told me it sounded like a little head concussion, but if it continued, to bring her in. A week later, she was still getting spells of being dizzy, so I took her into her pediatrician. They gave her an ECG and checked her out...finding nothing. Again, maybe a small concussion, but if it didn't go away in another week, call her cardiologist. A few days later, she called me crying from school; she was in rotations with another teacher when she was sitting in her desk, and she said she got dizzy and fell asleep. She woke up to the class shouting at her to wake up, and wondering if she was ok. Her teacher didn't know what happened, nor did the other teacher whose room she was in at the time, mention anything about the incident. (2 years later, as she has improved on communicating about her feelings and emotions, I discovered that she actually passed out! And get this...she wasn't in rotations like her teacher told me, she was in her class. I don't know what makes me madder, this teacher lying to me, or this teacher not even noticing a child passed out on the desk! It was her classmates sitting next to her who found her and started to get her to wake up. A few hours after that happened, is when she called me! Anyway, I brought her home and called her cardiologist who told me to hook her up to her pacemaker machine to check it. If anything is wrong with it, it will let us know. This machine is much more advanced than the other one! It sends the data of the test to cardiology, and within minutes, Trish called me and said that her other lead/wire broke and is barely hanging on. The machine even told them the day and time that it actually broke, which was the day she fell off the couch. Amazing, yeah?? So, I was instructed to immediately take her to Primary Children's Hospital.
At this time, Logen was 6 and Sawyer was 3 1/2, and I was 6 months pregnant with Gavin. Luckily I have good family near by who was able to help me out. So, the story with this lead was basically the same one when she was almost 2...it was wearing out from all those blows and finally gave out with the fall. They admitted her to observe, and when it faltered out again while she was hooked up to machines, they decided to operate first thing in the morning. You would think after 3 surgeries already, I'd be prepared to go through another one. But I took it as hard as the last few. It was more heart breaking this time, because she was older and more aware of what was going on. And although she did her best to be brave, she was scared to death. The staff was great at bringing in a doll and showing her, on the doll, what to expect with IV's and procedures. My emotions were so high anyway because of my pregnancy, but when tears started dripping down as I walked her to the operating room, the staff and doctors let me go into the room and hold her hand on the table while they put her to sleep. They were so great, not only to her, but to me too. She started crying and pleaded with me to take her home, that she didn't want to do this. Again, my already broken heart became shattered into pieces. And as she drifted off to sleep, I completely lost it. They all reassured me that they would take good care of her and everything would be just fine. And it was. She was a trooper. Dr. Surreal was amazing at operating. They couldn't get the old lead out, so they tapped it and left it in with the new one that was put in. They also gave her a brand new and improved pacemaker. The next day she was able to go home. She healed quickly, although a lot more vocal about her pain and discomfort than the last few surgeries. She was able to go back to school a week later, taking her latest pacemaker that was removed, with her to show off.
I often wonder what goes through her classmates' heads when they hear her story and see her pacemakers. Do they really understand what a pacemaker is? Or how it is literally a small machine that is keeping her alive? Do they think any less or different about her? I'm sure time will tell. I think it was at this time that her cardiologist, Dr. Shaddy, told us he was moving back east and would no longer be her doctor. I had a hard time with this, since he had been with us for the past 8 years. But he left us in good hands, with Dr. Susan Etheridge. She had been around, assisting us with Dr. Shaddy, the past 8 years also, and was very familiar with Jessica.
So, here we are today, with the same pacemaker that was implanted in March 2008. And (knock on wood), we've had no problems. I found a great support group for mother's with children and/or angels who were born with CHD, called Intermountain Healing Hearts.(http://intermountainhealinghearts.org) This has been such a blessing to me! To know I'm not a lone, and get the reassurance and love from those who know and have been through what I've been through. We've met some amazing people through this group, that I'm so thankful for. Jessica and I were even able to meet musician Paul Cardall, who received a heart transplant a year ago. What a strong, faithful, amazing man to look up to for support! To hear his story through the mouth of his mother, was simply amazing for me. To know that we share a lot of the feelings and go through some of the same experiences she has, and feed off her strength and support, as a mother of a CHD child, has helped me tremendously! My family and I were also able to attend a camp put on through IHH. It was awesome to spend time with other families who are going through the same adventures we are on with Jessica. And no matter how many stories I hear, I'm always grateful to have the adventure's and trials we've had with Jessica...I wouldn't want to trade with any of them. Some of them ended in death, and I couldn't have even handled that. Some of them fare much better off than Jessi, but then I wouldn't have learned or grown as much as I have, or become as close as I am with her. As weird as this sounds, after all of this, I'm so grateful for being able to go through this with Jessica. It has helped define me as a person, a wife, a mother, a sister, a friend. I've grown so tremendously in ways I otherwise would have not. God new that. He knew, being as stubborn as I am, I wouldn't have learned it any other way. And with that said, I hope Jessica can someday feel the same way. I pray for her to know her potential, her strength, her bravery, and her beauty, and to use it in becoming a confident, selfless, understanding, passionate and loving woman who will go far and help others in this world. But above all, I pray she will be happy. Happy with herself, with life, and with God. And I pray she and I both can experience this together, on Earth.
It also helps to have a loving, supportive husband who stood by my side the whole time. I'm not certain he really needed to learn all this, as he is a far better person than me, but he has patiently stood by mine, and Jessica's side through all of it. It hasn't been easy, and I know the future won't be either. But to know we have each other to help us get through, is all that I could ask for. I'm indeed so very thankful for beautiful Jessica, and especially for her being my daughter. What a privilege. God does love me!
And there you have it, Jessica's story.
At this time, Logen was 6 and Sawyer was 3 1/2, and I was 6 months pregnant with Gavin. Luckily I have good family near by who was able to help me out. So, the story with this lead was basically the same one when she was almost 2...it was wearing out from all those blows and finally gave out with the fall. They admitted her to observe, and when it faltered out again while she was hooked up to machines, they decided to operate first thing in the morning. You would think after 3 surgeries already, I'd be prepared to go through another one. But I took it as hard as the last few. It was more heart breaking this time, because she was older and more aware of what was going on. And although she did her best to be brave, she was scared to death. The staff was great at bringing in a doll and showing her, on the doll, what to expect with IV's and procedures. My emotions were so high anyway because of my pregnancy, but when tears started dripping down as I walked her to the operating room, the staff and doctors let me go into the room and hold her hand on the table while they put her to sleep. They were so great, not only to her, but to me too. She started crying and pleaded with me to take her home, that she didn't want to do this. Again, my already broken heart became shattered into pieces. And as she drifted off to sleep, I completely lost it. They all reassured me that they would take good care of her and everything would be just fine. And it was. She was a trooper. Dr. Surreal was amazing at operating. They couldn't get the old lead out, so they tapped it and left it in with the new one that was put in. They also gave her a brand new and improved pacemaker. The next day she was able to go home. She healed quickly, although a lot more vocal about her pain and discomfort than the last few surgeries. She was able to go back to school a week later, taking her latest pacemaker that was removed, with her to show off.
I often wonder what goes through her classmates' heads when they hear her story and see her pacemakers. Do they really understand what a pacemaker is? Or how it is literally a small machine that is keeping her alive? Do they think any less or different about her? I'm sure time will tell. I think it was at this time that her cardiologist, Dr. Shaddy, told us he was moving back east and would no longer be her doctor. I had a hard time with this, since he had been with us for the past 8 years. But he left us in good hands, with Dr. Susan Etheridge. She had been around, assisting us with Dr. Shaddy, the past 8 years also, and was very familiar with Jessica.
So, here we are today, with the same pacemaker that was implanted in March 2008. And (knock on wood), we've had no problems. I found a great support group for mother's with children and/or angels who were born with CHD, called Intermountain Healing Hearts.(http://intermountainhealinghearts.org) This has been such a blessing to me! To know I'm not a lone, and get the reassurance and love from those who know and have been through what I've been through. We've met some amazing people through this group, that I'm so thankful for. Jessica and I were even able to meet musician Paul Cardall, who received a heart transplant a year ago. What a strong, faithful, amazing man to look up to for support! To hear his story through the mouth of his mother, was simply amazing for me. To know that we share a lot of the feelings and go through some of the same experiences she has, and feed off her strength and support, as a mother of a CHD child, has helped me tremendously! My family and I were also able to attend a camp put on through IHH. It was awesome to spend time with other families who are going through the same adventures we are on with Jessica. And no matter how many stories I hear, I'm always grateful to have the adventure's and trials we've had with Jessica...I wouldn't want to trade with any of them. Some of them ended in death, and I couldn't have even handled that. Some of them fare much better off than Jessi, but then I wouldn't have learned or grown as much as I have, or become as close as I am with her. As weird as this sounds, after all of this, I'm so grateful for being able to go through this with Jessica. It has helped define me as a person, a wife, a mother, a sister, a friend. I've grown so tremendously in ways I otherwise would have not. God new that. He knew, being as stubborn as I am, I wouldn't have learned it any other way. And with that said, I hope Jessica can someday feel the same way. I pray for her to know her potential, her strength, her bravery, and her beauty, and to use it in becoming a confident, selfless, understanding, passionate and loving woman who will go far and help others in this world. But above all, I pray she will be happy. Happy with herself, with life, and with God. And I pray she and I both can experience this together, on Earth.
And there you have it, Jessica's story.
6 comments:
Aimee...you have me in tears! What a scary scary scary life changing time you have had with all of this! What an amazing little girl you have...she must has a very special purpose to fufill in this life. It is so interesting how I can read someone's story and while I have never gone through the same things I can relate on many levels because of my own trials in life. Aimee I love you and I am so thankful to know you! I love Jessica and I am so grateful she is Brenley's friend!!!! Thank you for sharing your story/her story with all of us! You are an amazing woman!
Thanks so much for sharing "Jessica's Story", and thanks for sharing your testimony of our loving Heavenly Father.
Wow! I had no idea about any of that. I'm impressed that you were able to share her story and your feelings. You are such a strong person and you have so much love for your family. I can't imagine anything more challenging than watching your child suffer and feeling like there is nothing you can do to help them. It's so wonderful to know that we are not the only ones watching over them.
I know Jessica will be grateful that you documented your feelings and your perspective. Thank you for taking the time to work through that on your blog. You are an amazing person and have such a beautiful family.
I can only echo the previous comments. Bless you all on your continued journey together.
Thank you everyone! I love and admire each of you also!!
I couldn't read her story straight through...I had to focus on something else every few minutes to get to the end. Your expressive writing tells a beautiful story. I'm sorry I haven't been a better aunt...should have been a support for you all. Love your faith and testimony of our Father's love!
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