A Rose among Thorns
I got a phone call this morning from a good friend of mine. She had a call from a friend of hers who is pregnant. She just got the news that there's a 95% probability that the baby that she's carrying had Down Syndrome. My friend called to see if I would talk to this young woman. Absolutely!
So, I called and spoke with this young mother who is dealing with the uncertainty of what she is about to experience. She spoke of the lifespan of her unborn daughter; does she have to have a c-section or can she give birth normally. What is she to expect? So, I started to tell her the story of my Mouse, Andrea.
My pregnancy with Andrea was textbook. There wasn't a pregnancy symptom that I didn't have. I gained weight when I was supposed to; I had morning sickness when I was supposed to, everything was normal, there was zero reason to believe that there was even a little issue. All I gained was 21 pounds, nothing indicated problems. I had an ultrasound because the technology was fresh and it was an option. I remember being in awe over the image on the screen who was moving about, sucking its thumb and scooching over to the side because of the Doppler. I was in love.
Andrea's water broke at 8:30 the night she was born. I had spent the day doing laundry, cleaning and generally fussing about the house and my mom and mother in law just watched. They knew I was nesting. When we finally settled down to watch t.v., Andrea decided to make her entrance. It took three hours and forty five minutes from water break to grand entrance and a fairly quiet birthing room. Of course the nurses and doctor congratulated my husband and I, they fussed over the baby and me but they were kind of quiet. I didn't deliver the placenta so they had to take me into the delivery room where they almost lost me. The next day, as we were preparing to take Andrea home, the pediatrician came in and broke the news. Andrea showed every indication that she had Down Syndrome. She had the fold at the back of the neck, the spacing between her eyes, the smaller bridge of the nose. They were doing blood tests to verify the diagnosis, but it was his opinion that we should just put her in a home and forget about her. She would never walk, talk or do for herself. We were young and could have more children. Had I had the strength, I would have stood up and punched him out. I couldn't believe someone who lived in the 20th century, with all of the advances that we had in science and medical technology that he would come up with that. We took Andrea home, determined to make a liar of him.
Andrea grew normally for the next couple of months. She was a happy baby and slept through the night after only a few weeks. Then she had a UTI that sent her to the hospital, only we didn't know that's what it was when we went. All we knew is that she had a temperature of 101 that wouldn't go away. When we got to the hospital, we were face to face with the same pediatrician who told us about Andrea's Down Syndrome. I demanded to have another pediatrician, but found that the other one was out of town and we were out of luck, we were stuck with him. I told him that I only wanted facts from him and not his opinions, which he agreed to. Blood work was done and it was found that her white count was high. The things that I had found on Down Syndrome in the library indicated that leukemia was high in Downs kids, so the news that the white count was high made our stomachs sink. They did x-rays and an EKG on her. The x-rays found some what they thought was congestion, but the EKG was more indicative of what was going on. There seemed to be a problem with her heart rhythm. A pediatric cardiologist was called in to read the tapes and he believed her to have a patent ductus problem. The patent ductus normally closes within a few days from birth, Andrea's was yet to close. We were told that she had to go to Salt Lake City for a heart cath.
Once we were in Salt Lake City, we checked into the outpatient portion of the hospital and waited on the procedure. The doctor came out afterwards and let us know the extent of the damage to her heart. Not only did she have the patent ductus problem, but there was another, more serious problem. She had an A-V canal. The septum between the Atrial and Ventricular chambers of the heart was non-existent. There was no one who had the procedure that was as young as she was. There were risks, a lot of them. We flew home in silence, not knowing the future of our baby girl.
At three months old, we went back to Salt Lake City for the first procedure, the patent ductus ligation. This went very well, but we were told that she had some damage to her lungs because of the length of time it was open. We had to wait, though, for the second procedure until she had gained some weight. He wanted to make sure that she was healthy enough to finish up the repairs. After a few days we went home and started to get her weight up for the next surgery. When we got home and while we were trying get her weight up, Andrea ended up with pneumonia and a collapsed lung, causing a setback in getting her weight up. I learned what percussion therapy was and was supplied a little blue rubber cup to pound gently on her back with to break up the congestion in her lungs. When her weight was up sufficiently, we made the appointment to go back to Salt Lake City.
On October 26, 1983, I took my baby girl to the surgery suite at Primary Children's Hospital. I didn't know if I would see her alive again as this surgery was incredibly risky and delicate. Her heart was the size of a walnut and the surgeons had the task of putting a silicon patch in the middle of it. This would be a six hour surgery and then it was wait and see. I had brought my Bible that my Nanny had given me when I was thirteen and I settled in for the duration. Six hours came and went and there was no word from the surgeons what was going on. I started to pace and worry. Soon after, a nurse came out to tell us that there was a problem and a surgeon would be out as soon as they could to update us. Another hour passed and we were getting panicked. Finally, her surgeon came out to tell us what had happened. Because her heart was so small it was a difficult surgery in the first place, but they were having problems getting her off of the heart/lung machine. They had finally gotten her off of it and they were preparing her to go to recovery. My husband and I were directed to the doors that she would go out of to go to recovery and we were encouraged to go recovery with her. We were also cautioned that what we would witness was going to be disturbing and that the next 48 hours was crucial for her recovery. He was right, the sight we witnessed was disturbing. Andrea was wheeled out of the surgery suite with more wires than there was body. There were tubes everywhere, wires everywhere and it was hard to see my baby in that condition. To this day, the picture of what I saw still brings me to tears. The one thing that I do remember is that she was pink, actually pink.I didn't remember her ever being that pink.
Once she was finally settled in her bed in Infant ICU, the surgeon came in and talked to us. We were encouraged to sit by her side, talking to her, reading to her, singing to her. Studies showed that when patients were in comas or out of serious surgeries as she was that the sound of voices and things that she is familiar with speeds recovery. He also cautioned us that, again, the next 48 hours was crucial for her recovery. If she made it through that time frame then she would be well on her way to recovery. This was the time that the body made its adjustments to the trauma that it had just encountered. He advised us what we were expect during that time frame, the ups and downs, he basically told us the naked truth about everything that would go on during the next two days. I stayed by her side until 3 p.m. the next day, leaving only to go to the bathroom or get some water. I read to her, I talked to her and I worried.
The next day, at 2:00 in the afternoon, I was asked to leave for shift change. I was reluctant to go, I didn't know why, but I didn't want to go. My mom and mother-in-law had to take me out of there so that I could eat since the last time I had eaten was the day before. We went down the three floors to the snack bar and I had barely sat on the stool when I heard the stat call for one of her surgeons. I knew that they had at least two other patients in ICU other than Andrea, but my heart said move it. I flew up three floors of stairs without touching one of them To this day I believe that God lifted me up those stairs because I don't believe that anyone can run up three flights of stairs in 30 seconds. When I burst through the door to the stairwell, which was right across from the entrance to the Infant ICU, the nurses were putting out a sign that said no visitors until further notice. I asked if it was for her and the nurse wordlessly guided me to a room at the end of the hall.
The room, which was tastefully decorated and had soft lighting was quiet. I sat for a minute then got up and looked at the brochures that were on a table. The one that I picked up said "what to do when your baby dies". I fell to my knees. I pleaded with God to spare my baby. I begged him to take me instead. I told Him that I would give up all of the things that had kept me from Him and that I would live my life for Him if He would just let her live. I told Him that it took so long for us to get her, and asked Him why He would take her now? I asked Christ to be in my life. Two minutes later and me still on my knees, the nurse came in and said that she was fine. She explained that the surgeon was there and gave her CPR and that she was fine. My life at 2:22 p.m. on October 27, 1983 had inexplicably changed and has never been the same since.
Later, once all of the excitement had died down we learned what had happened. Andrea's bed was right by the nurses station and they could see everything that was going on with her without ever leaving their station. When Andrea's pressures had dropped, prompting the surgeon stat call, they had not seen the surgeon come in to check on her. The door, by the way, was right by the nurses station as well. When the call went out, he was already there doing CPR. They said coincidence, I said the Hand of God.
Andrea has since grown well. She has been mainstreamed into regular school classes and has gone on to graduate with 33 credits. She walked the stage and received a real diploma, not a certificate to roaring applause from her classmates and tears from her mama and grandma. She has participated in Special Olympics and received 6 medals. Three for bowling, three for track and field. She has gone to three proms, and one of them she actually got to ride in a limo. She has done well and continues to do well. Today she is 29 years old, is in the New England Journal (so I have been told) of Medicine as the youngest recipient for the AV canal silicone patch procedure. She has the cognitive skills of a six year old, but can run down the t.v. schedule like no one's business. As for the computer, she can navigate the web with the best of them. She has her good days, her drama days, her bad days and still she is as sweet and as goofy and as mean as a junkyard dog as anyone who doesn't have Down Syndrome.
So, that is the history of my Rose among the Thorns. She was and is the Little Child who shall lead them, because she unknowingly led me to Christ and the life that I left behind I can't fathom what it could possibly be like. I have no idea what I would have become or where I would be, if I would have been alive at all. I could speculate all day on that or I can rejoice in the life that I now have. Have there been really rough times? Absolutely. Have there been awesome times. Without a doubt. Would I have changed anything? No, not at all. Its because of Andrea that I moved forward to become the woman, mother and wife that I am.
So, I called and spoke with this young mother who is dealing with the uncertainty of what she is about to experience. She spoke of the lifespan of her unborn daughter; does she have to have a c-section or can she give birth normally. What is she to expect? So, I started to tell her the story of my Mouse, Andrea.
My pregnancy with Andrea was textbook. There wasn't a pregnancy symptom that I didn't have. I gained weight when I was supposed to; I had morning sickness when I was supposed to, everything was normal, there was zero reason to believe that there was even a little issue. All I gained was 21 pounds, nothing indicated problems. I had an ultrasound because the technology was fresh and it was an option. I remember being in awe over the image on the screen who was moving about, sucking its thumb and scooching over to the side because of the Doppler. I was in love.
Andrea's water broke at 8:30 the night she was born. I had spent the day doing laundry, cleaning and generally fussing about the house and my mom and mother in law just watched. They knew I was nesting. When we finally settled down to watch t.v., Andrea decided to make her entrance. It took three hours and forty five minutes from water break to grand entrance and a fairly quiet birthing room. Of course the nurses and doctor congratulated my husband and I, they fussed over the baby and me but they were kind of quiet. I didn't deliver the placenta so they had to take me into the delivery room where they almost lost me. The next day, as we were preparing to take Andrea home, the pediatrician came in and broke the news. Andrea showed every indication that she had Down Syndrome. She had the fold at the back of the neck, the spacing between her eyes, the smaller bridge of the nose. They were doing blood tests to verify the diagnosis, but it was his opinion that we should just put her in a home and forget about her. She would never walk, talk or do for herself. We were young and could have more children. Had I had the strength, I would have stood up and punched him out. I couldn't believe someone who lived in the 20th century, with all of the advances that we had in science and medical technology that he would come up with that. We took Andrea home, determined to make a liar of him.
Andrea grew normally for the next couple of months. She was a happy baby and slept through the night after only a few weeks. Then she had a UTI that sent her to the hospital, only we didn't know that's what it was when we went. All we knew is that she had a temperature of 101 that wouldn't go away. When we got to the hospital, we were face to face with the same pediatrician who told us about Andrea's Down Syndrome. I demanded to have another pediatrician, but found that the other one was out of town and we were out of luck, we were stuck with him. I told him that I only wanted facts from him and not his opinions, which he agreed to. Blood work was done and it was found that her white count was high. The things that I had found on Down Syndrome in the library indicated that leukemia was high in Downs kids, so the news that the white count was high made our stomachs sink. They did x-rays and an EKG on her. The x-rays found some what they thought was congestion, but the EKG was more indicative of what was going on. There seemed to be a problem with her heart rhythm. A pediatric cardiologist was called in to read the tapes and he believed her to have a patent ductus problem. The patent ductus normally closes within a few days from birth, Andrea's was yet to close. We were told that she had to go to Salt Lake City for a heart cath.
Once we were in Salt Lake City, we checked into the outpatient portion of the hospital and waited on the procedure. The doctor came out afterwards and let us know the extent of the damage to her heart. Not only did she have the patent ductus problem, but there was another, more serious problem. She had an A-V canal. The septum between the Atrial and Ventricular chambers of the heart was non-existent. There was no one who had the procedure that was as young as she was. There were risks, a lot of them. We flew home in silence, not knowing the future of our baby girl.
At three months old, we went back to Salt Lake City for the first procedure, the patent ductus ligation. This went very well, but we were told that she had some damage to her lungs because of the length of time it was open. We had to wait, though, for the second procedure until she had gained some weight. He wanted to make sure that she was healthy enough to finish up the repairs. After a few days we went home and started to get her weight up for the next surgery. When we got home and while we were trying get her weight up, Andrea ended up with pneumonia and a collapsed lung, causing a setback in getting her weight up. I learned what percussion therapy was and was supplied a little blue rubber cup to pound gently on her back with to break up the congestion in her lungs. When her weight was up sufficiently, we made the appointment to go back to Salt Lake City.
On October 26, 1983, I took my baby girl to the surgery suite at Primary Children's Hospital. I didn't know if I would see her alive again as this surgery was incredibly risky and delicate. Her heart was the size of a walnut and the surgeons had the task of putting a silicon patch in the middle of it. This would be a six hour surgery and then it was wait and see. I had brought my Bible that my Nanny had given me when I was thirteen and I settled in for the duration. Six hours came and went and there was no word from the surgeons what was going on. I started to pace and worry. Soon after, a nurse came out to tell us that there was a problem and a surgeon would be out as soon as they could to update us. Another hour passed and we were getting panicked. Finally, her surgeon came out to tell us what had happened. Because her heart was so small it was a difficult surgery in the first place, but they were having problems getting her off of the heart/lung machine. They had finally gotten her off of it and they were preparing her to go to recovery. My husband and I were directed to the doors that she would go out of to go to recovery and we were encouraged to go recovery with her. We were also cautioned that what we would witness was going to be disturbing and that the next 48 hours was crucial for her recovery. He was right, the sight we witnessed was disturbing. Andrea was wheeled out of the surgery suite with more wires than there was body. There were tubes everywhere, wires everywhere and it was hard to see my baby in that condition. To this day, the picture of what I saw still brings me to tears. The one thing that I do remember is that she was pink, actually pink.I didn't remember her ever being that pink.
Once she was finally settled in her bed in Infant ICU, the surgeon came in and talked to us. We were encouraged to sit by her side, talking to her, reading to her, singing to her. Studies showed that when patients were in comas or out of serious surgeries as she was that the sound of voices and things that she is familiar with speeds recovery. He also cautioned us that, again, the next 48 hours was crucial for her recovery. If she made it through that time frame then she would be well on her way to recovery. This was the time that the body made its adjustments to the trauma that it had just encountered. He advised us what we were expect during that time frame, the ups and downs, he basically told us the naked truth about everything that would go on during the next two days. I stayed by her side until 3 p.m. the next day, leaving only to go to the bathroom or get some water. I read to her, I talked to her and I worried.
The next day, at 2:00 in the afternoon, I was asked to leave for shift change. I was reluctant to go, I didn't know why, but I didn't want to go. My mom and mother-in-law had to take me out of there so that I could eat since the last time I had eaten was the day before. We went down the three floors to the snack bar and I had barely sat on the stool when I heard the stat call for one of her surgeons. I knew that they had at least two other patients in ICU other than Andrea, but my heart said move it. I flew up three floors of stairs without touching one of them To this day I believe that God lifted me up those stairs because I don't believe that anyone can run up three flights of stairs in 30 seconds. When I burst through the door to the stairwell, which was right across from the entrance to the Infant ICU, the nurses were putting out a sign that said no visitors until further notice. I asked if it was for her and the nurse wordlessly guided me to a room at the end of the hall.
The room, which was tastefully decorated and had soft lighting was quiet. I sat for a minute then got up and looked at the brochures that were on a table. The one that I picked up said "what to do when your baby dies". I fell to my knees. I pleaded with God to spare my baby. I begged him to take me instead. I told Him that I would give up all of the things that had kept me from Him and that I would live my life for Him if He would just let her live. I told Him that it took so long for us to get her, and asked Him why He would take her now? I asked Christ to be in my life. Two minutes later and me still on my knees, the nurse came in and said that she was fine. She explained that the surgeon was there and gave her CPR and that she was fine. My life at 2:22 p.m. on October 27, 1983 had inexplicably changed and has never been the same since.
Later, once all of the excitement had died down we learned what had happened. Andrea's bed was right by the nurses station and they could see everything that was going on with her without ever leaving their station. When Andrea's pressures had dropped, prompting the surgeon stat call, they had not seen the surgeon come in to check on her. The door, by the way, was right by the nurses station as well. When the call went out, he was already there doing CPR. They said coincidence, I said the Hand of God.
Andrea has since grown well. She has been mainstreamed into regular school classes and has gone on to graduate with 33 credits. She walked the stage and received a real diploma, not a certificate to roaring applause from her classmates and tears from her mama and grandma. She has participated in Special Olympics and received 6 medals. Three for bowling, three for track and field. She has gone to three proms, and one of them she actually got to ride in a limo. She has done well and continues to do well. Today she is 29 years old, is in the New England Journal (so I have been told) of Medicine as the youngest recipient for the AV canal silicone patch procedure. She has the cognitive skills of a six year old, but can run down the t.v. schedule like no one's business. As for the computer, she can navigate the web with the best of them. She has her good days, her drama days, her bad days and still she is as sweet and as goofy and as mean as a junkyard dog as anyone who doesn't have Down Syndrome.
So, that is the history of my Rose among the Thorns. She was and is the Little Child who shall lead them, because she unknowingly led me to Christ and the life that I left behind I can't fathom what it could possibly be like. I have no idea what I would have become or where I would be, if I would have been alive at all. I could speculate all day on that or I can rejoice in the life that I now have. Have there been really rough times? Absolutely. Have there been awesome times. Without a doubt. Would I have changed anything? No, not at all. Its because of Andrea that I moved forward to become the woman, mother and wife that I am.
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