Serenity's Survival Mission
Donation protected
Serenity's Survival Story!!!
Our Story….I found out I was pregnant on February 25th 2014. I sat in the hospital for hours for confirmation. I then scheduled an appointment at The Helen O. Dickens Center inside of HUP. I was 8wks pregnant. At my first appointment they listened to my baby heart rate and everything was good. By the time of my second appointment I was really having bad morning sickness. So, I was prescribed different meds to try and control the morning sickness but nothing was really working. My third appointment changed my life, or was a life charger. While at the appointment the doctor listened to my baby heart beat and a look of concern came across her face, she stepped out the room and came back with a second set of ears along with an ultrasound machine. They began asking me questions inquiring about injury to the baby. I replied, No. They proceed to tell me my baby's heart rate wasn't normal and a follow-up is needed with a High Risk Specialist doctor. My baby heart rate was 123bpm and about 3wks later her heart rate had dropped to 100bpm. After this discovery Dad and I decided to get an Amniocentesis and to begin genetic testing. After finding out nothing was genetically wrong among us, I had an Amniocentesis on June 6th which turned out to be the most hurtful day of my life. Just the beginning of many heart breaking appointment. The worst of all was the doctor who came into the room and asked me do I want to abort my baby because she won't make it to birth, to get an autopsy when she dies and walked right out the room. I felt like someone snatched my heart out my body. I couldn't believe how heartless that doctor was. I started going to the doctors twice a week, once time for a regular check-up and the second to see the Cardiologist. The Cardiologist performed and Echo for about 4-6hrs. each time to determine my baby's growth, heart rate a clear picture and diagnosis of what exactly was wrong with my baby girl heart. With each appointment my baby heart rate continues to drop, 123, 100, 86, 56 & 46bpm. Serenity's heart rate remains at 46bpm for the last 3 months of pregnancy. As a mother so determined to keep my baby however with every appointment the doctors continued saying, they don't know if they will see me next week because she may die at any given time. To leave every appointment with that being said, was unbearable I cried for hours. My family witness our hurt and pain on a daily basis. Dad and I prayed everyday for our baby girl to be a survivor. With myself gaining a lot of fluid, the doctors became concerned about me and my signs of heart failure too. The doctors decided that I would deliver in a special unit that would be optimal in saving both of our lives. The fluid weight gain was very hard on my body, the numbness in my stomach and the feet swelling was becoming unbearable. I wasn't worried about myself, all I was concerned about was saving my daughter and keeping her inside the womb for as long as possible so that she could be a survivor. September 30th I had a routine appointment and my blood pressure is extremely high, which has them really worried. Due to my blood pressure I was told they are going to take my baby girl out 4wks. early. Which made her chances of surviving 1 out of 10% chance because of her early gestational age for her. I then was prepared for a C-Section in which I was given a heavy dose of anti-seizure medication. I was then taken into the operating room. Where I had to be kept awake by my future husband. They delivered my baby girl and got her stable with her heart rate at 46bpm . She is a survivor . Happy Birthday was all I heard at 12:03a.m. on October 1st, 2014, I then drifted off. The next time my fianc`e saw me I was having a seizure in my recovery room. I couldn't see my daughter for 24hrs. due to the heavy medication. However, every time I opened my eyes, I cried to see my daughter. Dad and other family members always had a picture of Serenity so that I could see her. The very first time I got to see her she was so tiny in her incubator bed. As I looked at the nurse explained to me the numbers on the monitor and her diagnosis. Her heart rate was 46bpm and she had a breathing tube. All I wanted to do was kiss and pick her up and couldn't. My heart was hurting however, I was so overwhelmed with the fact she was here and a survivor. As the next 5 days went past doctors watched her closely and so did we. I was taking notes and asking a million questions everyday. On the 6th day they asked me for consent for Serenity to get Pacer Wires to help her heart beat faster. I was really scared but, after reading up on it and talking with the doctors and Dad, we decided to have the surgery done. Two days later she was on her way down to the operating room. We knew that this wouldn't be her last surgery or the last time we seen her as long as we kept our faith in God, a day I will never forget. As Dad and I stood at her bedside waiting for her to roll off to the OR, the Anesthesiologist asked have you ever held her. Dad and I replied, No. She then carefully placed Serenity in my arms and I cried so hard. I just knew God wasn't gonna take this moment from me. Then Dad held her and he said, she changed his life. Just her touch and presents changed everything. From that day on it was we need consent for this procedure , this surgery, with everything there is still chance the she could die. Now, with the Pacer Wires her heart beat became faster. However another problem existed the fluid gain inside her body swelled her abdomen. The fluid would effect the wires so she had to get drains put into her stomach. Which stopped us from holding her for comfort. We sat at her bedside everyday waiting for another chance to hold her again while asking millions of questions and reading about all her diagnosis. In early December they told me she couldn't have the Pacer Wires anymore, she needed a actually dual chamber Pacemaker. However, she's really small and her heart is really sick. We knew she needed the Pacemaker, it's been known since she was inside the womb. So, without hesitation we was ready even though the size Pacemaker she need maybe to big for her. On December 16th my baby girl went back to the operating room for her biggest surgery so far. It's normally a simple procedure but, with her Heterotaxy Syndrome it was gonna be very complex. Serenity has made it thru another surgery. Now, it's time for the second attempt to get her off the breathing machine. The first time she only came off for about a hour and needed a lot of support. So, now they figure with her heart doing better and no need for a drain right now. Why not try again. They didn't want her to become truly dependent on the ventilator, she came off and was coin really well. She was just getting 3 liters of oxygen via nasal canula. For the next two weeks they watched Serenity trying to decide if she was ready to go to the step down unit. Just when we thought she was ready New Years Eve/Day, she had her first seizure, as I kissed her and welcome her into a New Year Serenity begin twitching at her lips and fingers, I knew exactly what was going on. I had to sign consent for them to give her a 48hrs. EEG where they would record and monitor her brain activity, which was really scary. After it was over they prescribed her some medication that would stop the seizures. The first med made it not noticeable to tell and the the second medication stopped the seizures completely, a big relief. Serenity is now back on a good track. It's time to take some test to see how her heart is progressing. This time her Cardiac Catheterization numbers didn't look too good and they said, she was in need of some type of surgery. We sat at the round table and had a meeting and put everything on the table. " It all come down to Serenity heart is really sick. The heart that Serenity has, she only has a 10% chance of surviving the first year of life." I said, well can she just have my heart she doesn't deserve to suffer. They replied, No that isn't possible. My only option right then was to start the evaluation for her to get on the Heart Transplant list. I read for days straight about all the pro's and con's to getting a Heart Transplant, all of Serenity's medical test results and diagnosis. I wrote down questions to ask when we went back to the round table. Where my questions would get answered and I would give consent. The tables has been turned, I left the meeting with unanswered questions. They just didn't know I knew as much about my baby girl situation. Once again I was signing on the dotted line to begin her evaluation. Dad and I got blood work done. We mapped out a plan on if and when we would get the call about what we were to do. So, the results are back a week later. The option to save my daughter life was snatched right away. Why? Because her heart was sick but, that was it. The pain we felt knowing that there was no way to save our baby girl life was horrifying. All the doctors could say was "We are join to try our best to keep her stable and comfortable with medications." The pain was so real. So, as the days and months go by she picking back up. She back at the Cath Lab on new Pacemaker setting, numbers looking better and medication doing its best. So, we back at really getting ready to go to the step down unit.With our hopes up high and feeling like we was almost home with our baby. A very big set back change had come. After 5 days she was rushed back to the CICU due to a respiratory distress. Serenity has stop breathing and was turning blue. The doctors didn't understand why or how. Serenity remained on the nasal canula now at 8 liters of oxygen the highest it could go. Each day they changed her pongs to rams of all sizes to give her the proper support of oxygen. The doctors decided to bring E.N.T (Ear, Nose, Throat) into the picture. While she was getting yet another Heart Cath they checked her airway to check for problems. They then came to me with no choices but the big picture that showed that Serenity airway to her lungs was too soft and closed completely with each breath and that she could only fix this problem by getting her a Trach. I cried for days at her bedside while reading up on everything about it. How for 6-8wks would be just learning how to care for a like her who would require 24hrs. supervision and care. And in a event of an emergency she would need medical attention. With her getting Trached being our only option. We had to prepare ourselves and our 4 and 13 year old boys. We had to take classes 2-3 times out the week to learn how to take care of her, find someone to watch the boys and still make time to be by Serenity's bedside. The day finally came Feburary 19, 2015 she was back off to the operating room. She would never be the same. And the fact that I couldn't hold her for the next 7 days was very hard for us. We've already couldn't hold her for the first 2 1/2 months of life. And now we couldn't hold her again but, we got threw it, it was for the best. When we finally saw her she looked like a different child. She grew because breathing had no longer been a exercise on her body. And she was at ease. Now a week has went pass and it's time for her first Trach Change she was crying and fussing but she made it threw. We started our new life schedule and skills. By time it was time for Dad and I to be hands on we was truly nervous but ready. As we prepared all the material and the bedside nurse watched the Respiratory Therapist came to assist , our hearts raced, Serenity cried and I cried. I really thought she was in pain. But, once it was over and she got into Daddy's arms it was like nothing ever happened. So just when we all got comfortable with Trach care and changes, something tragic happen, Dad has a broken femur bone. Dad is the primary caregiver for Serenity and can no longer finish his required Trach care/changes completion list so, we now have to reach out to family and friends to start taking the classes for Serenity's care. Days go past, Serenity release date pushed back because she won't be able to go home without two parents or two caregivers in the home with the proper skills and training. In the mean time we found a close friend who's always been supportive to begin taking the classes for Serenity care. After two weeks, Dad was back at Serenity bedside with pins and rods holding his leg together, relearning how to walk again. However he was determine to get his baby girl home. With the Dream Team in place everyone was completely signed off and ready for our first 24hrs stay with Serenity with no nurses. We also had to know the ventilator just as well as the child so we studied got tested and was cleared for our 24hrs. stay. On May 9th into the 10th Mother's Day. The best gift ever was to completely care for my baby girl as a family of skilled parents and caregivers. Monday morning we prepared for our final round table meeting after a 7 months stay at the Children's Hospital Of Philadelphia. Serenity was doing her best, ready to be discharged from the hospital when they decided to get some last minute blood work that would set the release date back a couple more days. My heart was broken again with everyone's hopes up we had to be patient. One of her blood levels was elevated and the one medication to keep it leveled was on back order at all pharmacies so we had to come up with another diuretic regiment to keep the fluid from regaining on her and bothering her heart. So, they've come up with a medication regiment . Serenity will be home for the first time ever May 14th, 2015 and our lives will change. Welcome Home Serenity and new life for everyone. The nurses, doctors appointments, transporting her around and giving her the best care inside the home. The first 15 days was a breeze , around the clock nursing and hands on parenting. Then we had our first emergency. Serenity had began to desaturate, loose color, and breathing became shallow. I had to Ambu Bag her back to her proper saturation number while Dad called for 911 emergency assistance. Serenity was rushed to the nearest hospital where they inline suction her too deep and made her Trach site bleed. Dad and I had to perform a emergency Trach change while trying to get her stable until CHOP EMT"s could arrive and transport her. Once they arrived they got her ventilator settings stable but, still nobody could get a IV in place so that she could get fluids and medications inside of her. So they had to put a IO directly into her bone. Once that IV was working Serenity was transported to the Children's Hospital of Philadelphia where doctors waited for her arrival and worked on her to get her stable and comfortable. While working on her for hours and asking us many questions. As the unit worked on Serenity we were sent out of the room. We utilized that time and went to her first home the CICU and told them the situation and asked for them to step in, these doctors had worked with Serenity all her life and knew her best. I knew they would get down to the diagnosis of what exactly happened to get us here. We've finish talking to the doctors and returned back to Serenity bedside, the nurses then told us she was being transferred to the CICU. Once she arrived downstairs everyone was asking millions of questions and calling us heroes. They then told us this was gonna be a very long night for Serenity and us, a lot of blood work and cultures was gonna be tested. After 24hrs the results are in, Serenity has a respiratory cold called Rhino and she didn't know how to fight it off like a healthy baby. That was a relief to know that it wasn't anything life threaten. So for the next couple of days she got antibiotics and respiratory treatments to break up the mucus inside her body. On the 5th day Serenity was discharged and back home with her family . Yes she still had a cold but, it wasn't nothing was couldn't be maintained at home. Two weeks later she has a routine appointment with Pulmonary. The doctors was alarmed with her appearance due to her large abdomen that she's always had. So, they felt like Serenity needed to be admitted once again. I was devastated. I felt like she looked the same as her baseline standards and didn't need to be away from home again. CICU we back like we never left. Serenity need to get test done at the Heart Catheterization Lab again to see why she had regained a little more fluid inside her abdomen. So they took her off any extra medication that she didn't receive at home to let her get sick just to see how it effects her heart. We then gave consent to send her to the Cath Lab. The results are back and the doctors won't tell me anything over the telephone. I was so depressed about Serenity being hospitalized I couldn't sit in there for days at a time this admission. I just wanted my baby girl home where I knew she was comfortable and happy. I went to the hospital to hear the results . The Heart Failure doctors was there waiting for my arrival. The doctor begin talking and telling me Serenity heart is really sick and we would like to evaluate her again to see if she is a candidate for a Heart Transplant. All I could say at that time was No, I will not give consent for this process just so that the option can be snatched away from Serenity and us again. The doctor then asked "Why, what is your knowledge about the Heart Transplant and Serenity diagnosis?" I replied, "Serenity heart is already a stiff muscle, just as well as a transplanted heart. She can get some type of structural surgery to try and help her heart and not worry about it rejecting or another transplant in a few years." The doctor then replied, "To be honest you are truly right and you know what's best for your child and is highly knowledgeable". I then asked about the second opinions from Pittsburgh and Boston Children's Hospital we got when we first was given the option to get a Heart Transplant, could they reached back out to them to see if they were interested in doing some structural work on Serenity's heart. Boston Children's Hospital said, they was confident and interested in doing open heart surgery to repair Serenity's heart once she gained some more positive weight.
https://share.shutterfly.com/action/welcome?sid=1AbsmTJwzbOHGQ
After following our history, Serenity's fight for life. She's living proof that she's beaten all odds against her, thus far. Therefore we are asking for financial support to help aid in her upcoming surgery's, transportation, and medical expenses.
Thank You in advance for all of your prayers & support.
THE CLARK FAMILY
Follow me on IG: @sincerenserenitymommi_
Follow me on Facebook: MsIndependent Angelique
Our Story….I found out I was pregnant on February 25th 2014. I sat in the hospital for hours for confirmation. I then scheduled an appointment at The Helen O. Dickens Center inside of HUP. I was 8wks pregnant. At my first appointment they listened to my baby heart rate and everything was good. By the time of my second appointment I was really having bad morning sickness. So, I was prescribed different meds to try and control the morning sickness but nothing was really working. My third appointment changed my life, or was a life charger. While at the appointment the doctor listened to my baby heart beat and a look of concern came across her face, she stepped out the room and came back with a second set of ears along with an ultrasound machine. They began asking me questions inquiring about injury to the baby. I replied, No. They proceed to tell me my baby's heart rate wasn't normal and a follow-up is needed with a High Risk Specialist doctor. My baby heart rate was 123bpm and about 3wks later her heart rate had dropped to 100bpm. After this discovery Dad and I decided to get an Amniocentesis and to begin genetic testing. After finding out nothing was genetically wrong among us, I had an Amniocentesis on June 6th which turned out to be the most hurtful day of my life. Just the beginning of many heart breaking appointment. The worst of all was the doctor who came into the room and asked me do I want to abort my baby because she won't make it to birth, to get an autopsy when she dies and walked right out the room. I felt like someone snatched my heart out my body. I couldn't believe how heartless that doctor was. I started going to the doctors twice a week, once time for a regular check-up and the second to see the Cardiologist. The Cardiologist performed and Echo for about 4-6hrs. each time to determine my baby's growth, heart rate a clear picture and diagnosis of what exactly was wrong with my baby girl heart. With each appointment my baby heart rate continues to drop, 123, 100, 86, 56 & 46bpm. Serenity's heart rate remains at 46bpm for the last 3 months of pregnancy. As a mother so determined to keep my baby however with every appointment the doctors continued saying, they don't know if they will see me next week because she may die at any given time. To leave every appointment with that being said, was unbearable I cried for hours. My family witness our hurt and pain on a daily basis. Dad and I prayed everyday for our baby girl to be a survivor. With myself gaining a lot of fluid, the doctors became concerned about me and my signs of heart failure too. The doctors decided that I would deliver in a special unit that would be optimal in saving both of our lives. The fluid weight gain was very hard on my body, the numbness in my stomach and the feet swelling was becoming unbearable. I wasn't worried about myself, all I was concerned about was saving my daughter and keeping her inside the womb for as long as possible so that she could be a survivor. September 30th I had a routine appointment and my blood pressure is extremely high, which has them really worried. Due to my blood pressure I was told they are going to take my baby girl out 4wks. early. Which made her chances of surviving 1 out of 10% chance because of her early gestational age for her. I then was prepared for a C-Section in which I was given a heavy dose of anti-seizure medication. I was then taken into the operating room. Where I had to be kept awake by my future husband. They delivered my baby girl and got her stable with her heart rate at 46bpm . She is a survivor . Happy Birthday was all I heard at 12:03a.m. on October 1st, 2014, I then drifted off. The next time my fianc`e saw me I was having a seizure in my recovery room. I couldn't see my daughter for 24hrs. due to the heavy medication. However, every time I opened my eyes, I cried to see my daughter. Dad and other family members always had a picture of Serenity so that I could see her. The very first time I got to see her she was so tiny in her incubator bed. As I looked at the nurse explained to me the numbers on the monitor and her diagnosis. Her heart rate was 46bpm and she had a breathing tube. All I wanted to do was kiss and pick her up and couldn't. My heart was hurting however, I was so overwhelmed with the fact she was here and a survivor. As the next 5 days went past doctors watched her closely and so did we. I was taking notes and asking a million questions everyday. On the 6th day they asked me for consent for Serenity to get Pacer Wires to help her heart beat faster. I was really scared but, after reading up on it and talking with the doctors and Dad, we decided to have the surgery done. Two days later she was on her way down to the operating room. We knew that this wouldn't be her last surgery or the last time we seen her as long as we kept our faith in God, a day I will never forget. As Dad and I stood at her bedside waiting for her to roll off to the OR, the Anesthesiologist asked have you ever held her. Dad and I replied, No. She then carefully placed Serenity in my arms and I cried so hard. I just knew God wasn't gonna take this moment from me. Then Dad held her and he said, she changed his life. Just her touch and presents changed everything. From that day on it was we need consent for this procedure , this surgery, with everything there is still chance the she could die. Now, with the Pacer Wires her heart beat became faster. However another problem existed the fluid gain inside her body swelled her abdomen. The fluid would effect the wires so she had to get drains put into her stomach. Which stopped us from holding her for comfort. We sat at her bedside everyday waiting for another chance to hold her again while asking millions of questions and reading about all her diagnosis. In early December they told me she couldn't have the Pacer Wires anymore, she needed a actually dual chamber Pacemaker. However, she's really small and her heart is really sick. We knew she needed the Pacemaker, it's been known since she was inside the womb. So, without hesitation we was ready even though the size Pacemaker she need maybe to big for her. On December 16th my baby girl went back to the operating room for her biggest surgery so far. It's normally a simple procedure but, with her Heterotaxy Syndrome it was gonna be very complex. Serenity has made it thru another surgery. Now, it's time for the second attempt to get her off the breathing machine. The first time she only came off for about a hour and needed a lot of support. So, now they figure with her heart doing better and no need for a drain right now. Why not try again. They didn't want her to become truly dependent on the ventilator, she came off and was coin really well. She was just getting 3 liters of oxygen via nasal canula. For the next two weeks they watched Serenity trying to decide if she was ready to go to the step down unit. Just when we thought she was ready New Years Eve/Day, she had her first seizure, as I kissed her and welcome her into a New Year Serenity begin twitching at her lips and fingers, I knew exactly what was going on. I had to sign consent for them to give her a 48hrs. EEG where they would record and monitor her brain activity, which was really scary. After it was over they prescribed her some medication that would stop the seizures. The first med made it not noticeable to tell and the the second medication stopped the seizures completely, a big relief. Serenity is now back on a good track. It's time to take some test to see how her heart is progressing. This time her Cardiac Catheterization numbers didn't look too good and they said, she was in need of some type of surgery. We sat at the round table and had a meeting and put everything on the table. " It all come down to Serenity heart is really sick. The heart that Serenity has, she only has a 10% chance of surviving the first year of life." I said, well can she just have my heart she doesn't deserve to suffer. They replied, No that isn't possible. My only option right then was to start the evaluation for her to get on the Heart Transplant list. I read for days straight about all the pro's and con's to getting a Heart Transplant, all of Serenity's medical test results and diagnosis. I wrote down questions to ask when we went back to the round table. Where my questions would get answered and I would give consent. The tables has been turned, I left the meeting with unanswered questions. They just didn't know I knew as much about my baby girl situation. Once again I was signing on the dotted line to begin her evaluation. Dad and I got blood work done. We mapped out a plan on if and when we would get the call about what we were to do. So, the results are back a week later. The option to save my daughter life was snatched right away. Why? Because her heart was sick but, that was it. The pain we felt knowing that there was no way to save our baby girl life was horrifying. All the doctors could say was "We are join to try our best to keep her stable and comfortable with medications." The pain was so real. So, as the days and months go by she picking back up. She back at the Cath Lab on new Pacemaker setting, numbers looking better and medication doing its best. So, we back at really getting ready to go to the step down unit.With our hopes up high and feeling like we was almost home with our baby. A very big set back change had come. After 5 days she was rushed back to the CICU due to a respiratory distress. Serenity has stop breathing and was turning blue. The doctors didn't understand why or how. Serenity remained on the nasal canula now at 8 liters of oxygen the highest it could go. Each day they changed her pongs to rams of all sizes to give her the proper support of oxygen. The doctors decided to bring E.N.T (Ear, Nose, Throat) into the picture. While she was getting yet another Heart Cath they checked her airway to check for problems. They then came to me with no choices but the big picture that showed that Serenity airway to her lungs was too soft and closed completely with each breath and that she could only fix this problem by getting her a Trach. I cried for days at her bedside while reading up on everything about it. How for 6-8wks would be just learning how to care for a like her who would require 24hrs. supervision and care. And in a event of an emergency she would need medical attention. With her getting Trached being our only option. We had to prepare ourselves and our 4 and 13 year old boys. We had to take classes 2-3 times out the week to learn how to take care of her, find someone to watch the boys and still make time to be by Serenity's bedside. The day finally came Feburary 19, 2015 she was back off to the operating room. She would never be the same. And the fact that I couldn't hold her for the next 7 days was very hard for us. We've already couldn't hold her for the first 2 1/2 months of life. And now we couldn't hold her again but, we got threw it, it was for the best. When we finally saw her she looked like a different child. She grew because breathing had no longer been a exercise on her body. And she was at ease. Now a week has went pass and it's time for her first Trach Change she was crying and fussing but she made it threw. We started our new life schedule and skills. By time it was time for Dad and I to be hands on we was truly nervous but ready. As we prepared all the material and the bedside nurse watched the Respiratory Therapist came to assist , our hearts raced, Serenity cried and I cried. I really thought she was in pain. But, once it was over and she got into Daddy's arms it was like nothing ever happened. So just when we all got comfortable with Trach care and changes, something tragic happen, Dad has a broken femur bone. Dad is the primary caregiver for Serenity and can no longer finish his required Trach care/changes completion list so, we now have to reach out to family and friends to start taking the classes for Serenity's care. Days go past, Serenity release date pushed back because she won't be able to go home without two parents or two caregivers in the home with the proper skills and training. In the mean time we found a close friend who's always been supportive to begin taking the classes for Serenity care. After two weeks, Dad was back at Serenity bedside with pins and rods holding his leg together, relearning how to walk again. However he was determine to get his baby girl home. With the Dream Team in place everyone was completely signed off and ready for our first 24hrs stay with Serenity with no nurses. We also had to know the ventilator just as well as the child so we studied got tested and was cleared for our 24hrs. stay. On May 9th into the 10th Mother's Day. The best gift ever was to completely care for my baby girl as a family of skilled parents and caregivers. Monday morning we prepared for our final round table meeting after a 7 months stay at the Children's Hospital Of Philadelphia. Serenity was doing her best, ready to be discharged from the hospital when they decided to get some last minute blood work that would set the release date back a couple more days. My heart was broken again with everyone's hopes up we had to be patient. One of her blood levels was elevated and the one medication to keep it leveled was on back order at all pharmacies so we had to come up with another diuretic regiment to keep the fluid from regaining on her and bothering her heart. So, they've come up with a medication regiment . Serenity will be home for the first time ever May 14th, 2015 and our lives will change. Welcome Home Serenity and new life for everyone. The nurses, doctors appointments, transporting her around and giving her the best care inside the home. The first 15 days was a breeze , around the clock nursing and hands on parenting. Then we had our first emergency. Serenity had began to desaturate, loose color, and breathing became shallow. I had to Ambu Bag her back to her proper saturation number while Dad called for 911 emergency assistance. Serenity was rushed to the nearest hospital where they inline suction her too deep and made her Trach site bleed. Dad and I had to perform a emergency Trach change while trying to get her stable until CHOP EMT"s could arrive and transport her. Once they arrived they got her ventilator settings stable but, still nobody could get a IV in place so that she could get fluids and medications inside of her. So they had to put a IO directly into her bone. Once that IV was working Serenity was transported to the Children's Hospital of Philadelphia where doctors waited for her arrival and worked on her to get her stable and comfortable. While working on her for hours and asking us many questions. As the unit worked on Serenity we were sent out of the room. We utilized that time and went to her first home the CICU and told them the situation and asked for them to step in, these doctors had worked with Serenity all her life and knew her best. I knew they would get down to the diagnosis of what exactly happened to get us here. We've finish talking to the doctors and returned back to Serenity bedside, the nurses then told us she was being transferred to the CICU. Once she arrived downstairs everyone was asking millions of questions and calling us heroes. They then told us this was gonna be a very long night for Serenity and us, a lot of blood work and cultures was gonna be tested. After 24hrs the results are in, Serenity has a respiratory cold called Rhino and she didn't know how to fight it off like a healthy baby. That was a relief to know that it wasn't anything life threaten. So for the next couple of days she got antibiotics and respiratory treatments to break up the mucus inside her body. On the 5th day Serenity was discharged and back home with her family . Yes she still had a cold but, it wasn't nothing was couldn't be maintained at home. Two weeks later she has a routine appointment with Pulmonary. The doctors was alarmed with her appearance due to her large abdomen that she's always had. So, they felt like Serenity needed to be admitted once again. I was devastated. I felt like she looked the same as her baseline standards and didn't need to be away from home again. CICU we back like we never left. Serenity need to get test done at the Heart Catheterization Lab again to see why she had regained a little more fluid inside her abdomen. So they took her off any extra medication that she didn't receive at home to let her get sick just to see how it effects her heart. We then gave consent to send her to the Cath Lab. The results are back and the doctors won't tell me anything over the telephone. I was so depressed about Serenity being hospitalized I couldn't sit in there for days at a time this admission. I just wanted my baby girl home where I knew she was comfortable and happy. I went to the hospital to hear the results . The Heart Failure doctors was there waiting for my arrival. The doctor begin talking and telling me Serenity heart is really sick and we would like to evaluate her again to see if she is a candidate for a Heart Transplant. All I could say at that time was No, I will not give consent for this process just so that the option can be snatched away from Serenity and us again. The doctor then asked "Why, what is your knowledge about the Heart Transplant and Serenity diagnosis?" I replied, "Serenity heart is already a stiff muscle, just as well as a transplanted heart. She can get some type of structural surgery to try and help her heart and not worry about it rejecting or another transplant in a few years." The doctor then replied, "To be honest you are truly right and you know what's best for your child and is highly knowledgeable". I then asked about the second opinions from Pittsburgh and Boston Children's Hospital we got when we first was given the option to get a Heart Transplant, could they reached back out to them to see if they were interested in doing some structural work on Serenity's heart. Boston Children's Hospital said, they was confident and interested in doing open heart surgery to repair Serenity's heart once she gained some more positive weight.
https://share.shutterfly.com/action/welcome?sid=1AbsmTJwzbOHGQ
After following our history, Serenity's fight for life. She's living proof that she's beaten all odds against her, thus far. Therefore we are asking for financial support to help aid in her upcoming surgery's, transportation, and medical expenses.
Thank You in advance for all of your prayers & support.
THE CLARK FAMILY
Follow me on IG: @sincerenserenitymommi_
Follow me on Facebook: MsIndependent Angelique
Organizer
MsIndependent Angelique
Organizer
Philadelphia, PA
