This is for my daughter.
Zaya I love you!
My daughter was born with a rare condition called Amayoplasia Congenitia. I made this page to share her story and to increase awarness for this condition which not many people have even heard of. This is Zaya's story.....
Zayas ultrasound 20weeks
My husband and I got married in May 2005. We had our first baby boy, Barrett Lane on July 9 2007.He was a healthly perfect little boy. We got pregnant with our second baby mid 2011.
We found out my daughter would have health issues at my 18 week ultrasound. The ultrasound showed abnormal positioning of her legs and feet, arms and hands. I laid on the exam table a cried until what felt like I had no tears left. My husband standing next to me had a look of panic. How could something be wrong with our baby? After what seemed like a year the ultrasound tech came back in this time with the doctor. He didn’t have much to tell us other then something did not look "normal". He suggested I go for some genetic testing. I had an amino done which took weeks to come back and told us nothing. So after weeks of tests and ultrasounds no one could tell my husband and I what her future would be like...Could she breathe on her own? Walk? Talk? Eat? Play? Live a somewhat "normal" life? All these questions and NO answers! We went through with the pregnancy.....
After what seemed like years my beautiful daughter Zaya Lynn Crofut was born April 29th 2011, 7 lbs 13 oz at UMC in Tucson AZ. Our worst fears had come true. She did indeed have serveral medical issues. Just minutes after birth she was having trouble breathing. She had contractors throughout her body, clubbed feet, hyper extended and hyper flexed right leg, her hands clenched in fists and not bending or moving her arms. It was really hard to see my sweet baby struggling just minutes after she was born. I didn’t hold her for hours....Finally my husband made me go to her. Once she was in my arms Instant love! It’s funny how your "Mommy instincts" overcome all your fears!
We found out my daughter would have health issues at my 18 week ultrasound. The ultrasound showed abnormal positioning of her legs and feet, arms and hands. I laid on the exam table a cried until what felt like I had no tears left. My husband standing next to me had a look of panic. How could something be wrong with our baby? After what seemed like a year the ultrasound tech came back in this time with the doctor. He didn’t have much to tell us other then something did not look "normal". He suggested I go for some genetic testing. I had an amino done which took weeks to come back and told us nothing. So after weeks of tests and ultrasounds no one could tell my husband and I what her future would be like...Could she breathe on her own? Walk? Talk? Eat? Play? Live a somewhat "normal" life? All these questions and NO answers! We went through with the pregnancy.....
After what seemed like years my beautiful daughter Zaya Lynn Crofut was born April 29th 2011, 7 lbs 13 oz at UMC in Tucson AZ. Our worst fears had come true. She did indeed have serveral medical issues. Just minutes after birth she was having trouble breathing. She had contractors throughout her body, clubbed feet, hyper extended and hyper flexed right leg, her hands clenched in fists and not bending or moving her arms. It was really hard to see my sweet baby struggling just minutes after she was born. I didn’t hold her for hours....Finally my husband made me go to her. Once she was in my arms Instant love! It’s funny how your "Mommy instincts" overcome all your fears!
Zaya was admitted to the NICU right after she was born. So began my life in the hospital. Soon after Zaya was born my husband had to leave for 3 months due to military orders....I was on my own with a very sick little girl and a very active 3 yeard old boy. Thank God i have wonderful family and friends who came to spend time with me and help me out while my husband was gone :)
Physical thearpy was the top priority on our minds...I wanted her to be able to function. We started with serial casting to correct her clubbed foot and a custom brace to bring her leg down. It was heart breaking to see this.... my little innocent newborn getting poked and proded 24 hours a day! Therapy was under way but her breathing ability was getting worse and worse. She was placed on a Cpap machine. After meeting with her doctors every morning for weeks Zaya was schuduled for surgery to first place a central line in her chest for IV access so they could stop poking her and second to plycate her diphram. Do to the postioning of her torso her lung was smushed and her diphram was not working like it should. The surgery went well Thank God! However a few weeks after surgery Zaya seemed to be worse then ever! At this point Zaya was still not eating on her own. After multi attempts to breast feed and bottle feed she just could not suck properly...See, Amsyoplasia affects muscle. Every muscle in her body lacked tone, making simple task nearly impossible for her. Another surgery was schuduled, this time to place a feeding tube directly into her belly.
Zaya was not even 3 months old and had gone through 2 surgeries and numerous procedures. After meeting with the pulminologists we decided Zaya needed a tracheostmy, a small tube placed in her trachea which would enable the doctors to better ventilate her. On my sons fourth birthday, Zaya went in for another surgery! Against my husband, wishes they placed her trach. Zaya almost instantly was doing better. She smiled for the first time and seemed to have more spunk! At this point she still could not eat on her own, hold her head up or move much of anything. She was still in the hospital 24 hours a day in the ICU. My husband had returned home from his orders and was also spending much his time in the hospital.
Shortly after my husband's return we got word we would be moving to Little Rock, Arkansas. Oh boy here we go! Not only did we have to pack up our house and life and move to a new state, we had to move our daughter. We would also be losing the hospital staff who have taken such good care of our little princess. The NICU nurses and doctors had become very familiar with Zaya. What she liked, how to hold her, all the little things a mother would know, the nurses learned as well. The nurses also let me do alot with her...baths and her daily care of trach and feeding tubes. I was very sad to leave UMC!
Physical thearpy was the top priority on our minds...I wanted her to be able to function. We started with serial casting to correct her clubbed foot and a custom brace to bring her leg down. It was heart breaking to see this.... my little innocent newborn getting poked and proded 24 hours a day! Therapy was under way but her breathing ability was getting worse and worse. She was placed on a Cpap machine. After meeting with her doctors every morning for weeks Zaya was schuduled for surgery to first place a central line in her chest for IV access so they could stop poking her and second to plycate her diphram. Do to the postioning of her torso her lung was smushed and her diphram was not working like it should. The surgery went well Thank God! However a few weeks after surgery Zaya seemed to be worse then ever! At this point Zaya was still not eating on her own. After multi attempts to breast feed and bottle feed she just could not suck properly...See, Amsyoplasia affects muscle. Every muscle in her body lacked tone, making simple task nearly impossible for her. Another surgery was schuduled, this time to place a feeding tube directly into her belly.
Zaya was not even 3 months old and had gone through 2 surgeries and numerous procedures. After meeting with the pulminologists we decided Zaya needed a tracheostmy, a small tube placed in her trachea which would enable the doctors to better ventilate her. On my sons fourth birthday, Zaya went in for another surgery! Against my husband, wishes they placed her trach. Zaya almost instantly was doing better. She smiled for the first time and seemed to have more spunk! At this point she still could not eat on her own, hold her head up or move much of anything. She was still in the hospital 24 hours a day in the ICU. My husband had returned home from his orders and was also spending much his time in the hospital.
Shortly after my husband's return we got word we would be moving to Little Rock, Arkansas. Oh boy here we go! Not only did we have to pack up our house and life and move to a new state, we had to move our daughter. We would also be losing the hospital staff who have taken such good care of our little princess. The NICU nurses and doctors had become very familiar with Zaya. What she liked, how to hold her, all the little things a mother would know, the nurses learned as well. The nurses also let me do alot with her...baths and her daily care of trach and feeding tubes. I was very sad to leave UMC!
Now, it's the end of September and we had just moved. We had a couple days before the baby would be transported to Arkansas Children’s hospital by medical flight. The longest 5 days EVER! Finally my little girl made it! I was soooo excited to see her as this was the longest I had been away from her since she was born!
When she got there I instantly noticed something was wrong. I asked the doctors if she had been given medication because she was just not herself. Well, after 2 hours of these new doctors, not knowing how much I knew about my daughter and her medical needs, decided to do blood work. Come to find out the transport team didn’t have her ventilator setting correct and her Co2 levels were through the roof. She was basically drowning in carbon dioxide. After a few days of increased assistance Zaya was back to normal. We spent the next few weeks getting adjusted to the new hospital and staff. Zaya seemed to be doing well and we started talking of discharge! REALLY???? I was so happy that I may finally be able to bring my baby home. It had been a lot of planning and training but we got there! She was discharged on October 31, 2011. We had around the clock home nursing and what used to be a very girly nursery turned into the look of a hospital room, BUT... Zaya Lynn was in her home, in her own crib and with her family!!!! My son was sooo happy to have his little sister home. Through all of this he didn’t understand much of why he always had to sit in the hospital and be quiet. It was a very hard 5 months for him. He is such a good big brother and from day one loved Zaya unconditionally. To him she was perfect!
It was an big adjustment for us to have strangers in our home, nurses in and out throughout the day. At this point my husband was still on extended leave and I had gone back to work. It was very hard for me not to be with her every day, but I knew my husband was enjoying his time with his baby girl. It had been a little over a week she had been home when my husband had made plans to go away for 2 days on a hunting trip with our neighbors. He was only going to be about 2 hours away...so my son and husband left for their trip.... The next day it was time for Zaya's first doctor’s appointment. Now taking her out was no easy task but my husband and I where determined to get her out as much as possible, her medical issues would not stop us! The nurse on duty that day and I loaded up the car and took Zaya to the hospital for her appointment. Success! In and out, easy as pie... this had given me the confidence that I could handle it, all the machines and medical supplies that came along with my little girl! We returned home and prepared to get ready to go to work and the nurse was getting Zaya out and ready to eat and change. That’s when my life as we know it was over!
Zaya was going into cardiac arrest. Her stats where dropping fast. The nurse and I knew she had done this time to time and began to start CPR to help her recover. This time was different. She wasn’t recovering. Her heart rate then dropped. I knew my daughter like the back of my hand but this was not normal. I started chest compressions and my nurse was giving her rescue breaths. No response from her. After trying to recover her on my own It was time to call 911. What seemed like days the ambulance came within minutes. When EMTs arrived my daughter had no pulse. After we moved her into the ambulance, I then fell to the garage floor and cried until I couldn’t breathe. I had remained calm and clear headed through what had been a living hell, watching my baby die. Once I knew she had the medical help she needed, I couldn’t control my emotions any longer. The ambulance sat in my driveway for 10 minutes trying to revive my baby. My neighbors who knew my daughter was sick had all seen the ambulance and came outside to see if I was okay. They picked me up off the ground and helped me into the ambulance. The EMT's got Zaya's heart beating and we were on our way to the hospital. On the way to the hospital I had called my husband with the devastating news of his daughter. He was on a mission to get back to see his baby girl! Thank you to the cop who pulled him over for speeding, and let him go! As I stood in the waiting room Zaya's nurses and doctors from when she was inpatient had all come to the ER to see what had happened. At this point she was stable, but highly medicated. She was moved from the ER to ICU. They continued to polk and stick her ... test after test....she was a living pin cushion. I was numb!
An hour or so later the ICU team that had been working on Zaya called us into a confence room. I knew this couldn’t be good news. The doctors had sat us down and told us she would probably never recover from her cardiac arrest. Her brain was not getting blood or oxygen, which could cause brain damage. They left her fate in our hands. My husband and I had a long conversation as to whether or not to keep her on the machines. We ended up going round and round, mostly because I couldn’t make this decision. After all we've been through, that’s it? We lose! After all the surgeries and procedures and long nights of no sleep... Zaya was going to die. That night my husband and I fought. He didn’t want her to suffer any more and I couldn’t lose my baby girl. He left the hospital. My best friend had come to pick up my son while we took care of Zaya, so he went to pick him up and bring him home. I stayed bedside, next to my daughter all night. The morning came and I decided to stop the medication to see if Zaya would respond. Hours later she still had not opened her eyes. She was lifeless in the bed, living off the assistance the machines gave her. I had quietly whispered in her ear that I am ready to let her go, I told her she deserved better than this life and she needed to go fly with the angels. We shut off the machines. Zaya Lynn Crofut died our arms at 11:25 am November 11, 2011.
It’s been almost 3 months since she died. My life is incomplete. My husband and I are doing well and have found each other to lean on(most of the time). My son somewhat understands and we told him Zaya lives with the angels now. We talk of her often and have many things around the house that remind us of her. No baby deserves the life my daughter had, but she did it with grace! Zaya was such a sweet little girl, who lit up her daddy’s face(and anyone eles she would smile at, she was picky at who got to see her chucky little grin ) ever time shed flash her little smile.She was a true daddy's girl...much to my dismay! We miss her every day, every minute of every second!
When she got there I instantly noticed something was wrong. I asked the doctors if she had been given medication because she was just not herself. Well, after 2 hours of these new doctors, not knowing how much I knew about my daughter and her medical needs, decided to do blood work. Come to find out the transport team didn’t have her ventilator setting correct and her Co2 levels were through the roof. She was basically drowning in carbon dioxide. After a few days of increased assistance Zaya was back to normal. We spent the next few weeks getting adjusted to the new hospital and staff. Zaya seemed to be doing well and we started talking of discharge! REALLY???? I was so happy that I may finally be able to bring my baby home. It had been a lot of planning and training but we got there! She was discharged on October 31, 2011. We had around the clock home nursing and what used to be a very girly nursery turned into the look of a hospital room, BUT... Zaya Lynn was in her home, in her own crib and with her family!!!! My son was sooo happy to have his little sister home. Through all of this he didn’t understand much of why he always had to sit in the hospital and be quiet. It was a very hard 5 months for him. He is such a good big brother and from day one loved Zaya unconditionally. To him she was perfect!
It was an big adjustment for us to have strangers in our home, nurses in and out throughout the day. At this point my husband was still on extended leave and I had gone back to work. It was very hard for me not to be with her every day, but I knew my husband was enjoying his time with his baby girl. It had been a little over a week she had been home when my husband had made plans to go away for 2 days on a hunting trip with our neighbors. He was only going to be about 2 hours away...so my son and husband left for their trip.... The next day it was time for Zaya's first doctor’s appointment. Now taking her out was no easy task but my husband and I where determined to get her out as much as possible, her medical issues would not stop us! The nurse on duty that day and I loaded up the car and took Zaya to the hospital for her appointment. Success! In and out, easy as pie... this had given me the confidence that I could handle it, all the machines and medical supplies that came along with my little girl! We returned home and prepared to get ready to go to work and the nurse was getting Zaya out and ready to eat and change. That’s when my life as we know it was over!
Zaya was going into cardiac arrest. Her stats where dropping fast. The nurse and I knew she had done this time to time and began to start CPR to help her recover. This time was different. She wasn’t recovering. Her heart rate then dropped. I knew my daughter like the back of my hand but this was not normal. I started chest compressions and my nurse was giving her rescue breaths. No response from her. After trying to recover her on my own It was time to call 911. What seemed like days the ambulance came within minutes. When EMTs arrived my daughter had no pulse. After we moved her into the ambulance, I then fell to the garage floor and cried until I couldn’t breathe. I had remained calm and clear headed through what had been a living hell, watching my baby die. Once I knew she had the medical help she needed, I couldn’t control my emotions any longer. The ambulance sat in my driveway for 10 minutes trying to revive my baby. My neighbors who knew my daughter was sick had all seen the ambulance and came outside to see if I was okay. They picked me up off the ground and helped me into the ambulance. The EMT's got Zaya's heart beating and we were on our way to the hospital. On the way to the hospital I had called my husband with the devastating news of his daughter. He was on a mission to get back to see his baby girl! Thank you to the cop who pulled him over for speeding, and let him go! As I stood in the waiting room Zaya's nurses and doctors from when she was inpatient had all come to the ER to see what had happened. At this point she was stable, but highly medicated. She was moved from the ER to ICU. They continued to polk and stick her ... test after test....she was a living pin cushion. I was numb!
An hour or so later the ICU team that had been working on Zaya called us into a confence room. I knew this couldn’t be good news. The doctors had sat us down and told us she would probably never recover from her cardiac arrest. Her brain was not getting blood or oxygen, which could cause brain damage. They left her fate in our hands. My husband and I had a long conversation as to whether or not to keep her on the machines. We ended up going round and round, mostly because I couldn’t make this decision. After all we've been through, that’s it? We lose! After all the surgeries and procedures and long nights of no sleep... Zaya was going to die. That night my husband and I fought. He didn’t want her to suffer any more and I couldn’t lose my baby girl. He left the hospital. My best friend had come to pick up my son while we took care of Zaya, so he went to pick him up and bring him home. I stayed bedside, next to my daughter all night. The morning came and I decided to stop the medication to see if Zaya would respond. Hours later she still had not opened her eyes. She was lifeless in the bed, living off the assistance the machines gave her. I had quietly whispered in her ear that I am ready to let her go, I told her she deserved better than this life and she needed to go fly with the angels. We shut off the machines. Zaya Lynn Crofut died our arms at 11:25 am November 11, 2011.
It’s been almost 3 months since she died. My life is incomplete. My husband and I are doing well and have found each other to lean on(most of the time). My son somewhat understands and we told him Zaya lives with the angels now. We talk of her often and have many things around the house that remind us of her. No baby deserves the life my daughter had, but she did it with grace! Zaya was such a sweet little girl, who lit up her daddy’s face(and anyone eles she would smile at, she was picky at who got to see her chucky little grin ) ever time shed flash her little smile.She was a true daddy's girl...much to my dismay! We miss her every day, every minute of every second!
So today I am not going to think about the pain, I am going to smile and thank God for picking me to be a angels mommy. Not everyone can say they held an angel in their arms, so I am pretty lucky!!
Life is not fair, Children shouldn't die. But I i wake up everyday and know i have the strength to live my life and make my angel proud.
Life is not fair, Children shouldn't die. But I i wake up everyday and know i have the strength to live my life and make my angel proud.