- S
- S
- S
First and foremost, I would like to let you know we feel so blessed and over the moon ecstatic that people are wanting to hear Emersyn's story and help with her future Medical Bills!
Now onto Emersyn Grace-Anns’ story….
Emersyn Grace-Ann started her fight for life at 24 weeks in utero. The doctors could not figure out what was going on in her bloated abdomen and sent us directly to Dr. Roger Wallace, a Parenatologist. We found ourselves so confused, this was supposed to be a 5 minute routine ultrasound, and then we were facing the fact that our baby was not going to live. Our lives took a drastic change within 24 hours, they informed us that she had a 0% chance of survival as her kidneys were failing due to fluid backup. We refused to settle with that answer. Our doctor decided as a last resort that he would try to perform a stint surgery on her, this is a technique rarely used because risk of puncture is so high, the survival rate is only 10%. Laparoscopically they go in through the mothers stomach, into the amniotic sack and into the fetus’s abdomen to place the stint. This usually causes so much distress that the mother's body will go into labor and the baby will be stillborn due to fluid/amniotic issues. Emersyn was the FIRST case in Montana for this procedure. This is when the overwhelming odds she would beat just got started. Emersyn proved to be strong and she went through the surgery with absolutely no complications. The doctors could not believe it! This was the day we knew we had a true fighter on our hands.
During the next 2 months we had appointments every week, driving 3 hours each time, (with Emersyns' big brothers, 14 month old twin boys in tow). To our surprise within 6 weeks she had pulled the stint out, so we were faced with the same risks all over again. She surprised them again by staying nice and still with complete cooperation. This time Dr. Wallace placed two stints for safety measures. At 35 weeks complications kept arising; her kidneys were shutting down, so we were flown to Denver as our doctors in Billings knew they could not handle her case and she was showing signs of distress, she was not full term and possessing a lot of complications. The doctors in Denver had never seen a case like this and told us she was surely going to be a silent birth (similar to a still birth), and we definitely would not be taking her home. I prayed that my husband would get there before they took her. He drove all night, non-stop for 10 hours from Montana, bringing our 16 month old twin sons, arriving with 12 minutes to spare. I was so thankful to see a familiar face and have him there.
On August 30, 2011 at 9:21 a.m. Emersyn was born, she did not cry or make a sound. The doctors rushed her away and my odds were slim to none that I would ever see her alive again. Within her first 24 hours she had 3 surgeries and stayed in the NICU trying to reach a stable point with the use of so many machines and medical tools. I never knew there could be so many IV's in one tiny body. I was finally able to see her that night and there's no other way to describe it other than it was absolutely scary. Emersyn was born with several of the most severe birth defects. Wait did I say several? I sure did...There is a high association with other birth defects, especially spina bifida, which occurs in up to 75% of the babies with several conditions.
After 2 days and 28 doctors assessing her, they also told us she also was diagnosed with Vacteral Syndrome, which included a heart defect and a tethered spinal cord. The doctors told us it was the start to spinal bifida. I sat and wondered did I do the right thing by trying to save her or should I have just let her go when I was pregnant. It was so hard to stay strong as my husband distanced himself from reality as his coping method, I believe his military service in Iraq changed him and how he copes with heartache, and he says “if you don’t give it space in your heart it won’t hurt”. I knew I had to get it together and fight for my little fighter who was losing the battle. After 5 days I finally got to hold her and I was scared to death. It's sad to have a mother hold her newborn baby and be scared because of all the wires, tubes, etc. attached all over her as her life support. It was at that moment though when she looked at me, and I knew that she was meant to be here and no matter what we had to go through she was so worth the heartaches and fights we were coming upon.
So let me tell you about her odds, we were told she would never be able to sit up on her own, walk, talk, and would probably be tube fed the rest of her life. She would require several heart surgeries and at least 20 more surgeries to try and help give her some quality of life. Well, we have been through 11 surgeries the biggest being her open heart surgery and as of today they told us her heart is healthy but not whole when comparing her to a four year old. There will probably be more surgeries for that, but only time will tell as she gets older. We have done months of therapy, including physical therapy and OT, but hard work pays off and she has graduated all her therapies. She can run faster than most kids, she never stops talking, and loves to eat. She is an inspiration to those that want to give up and a true miracle! Her kidneys are functioning, yet continue to be very closely monitored. We continue to make bi-monthly trips to Denver Colorado, and when Emersyn gets sick it continues to be very scary as her immune system is so weak, due to all her daily meds. She has a long road ahead of her! We try to have some of the norms for a 4 year old, and we inevitability have some not so norms, but it's our normal! I see others who look down on us and remember that they don’t know her struggle and its complications and what matters is that we will take her the way she is. We believe in hope and will never give up! She will live her life full of many ups and downs as she will have to manage all of this on her own someday. But right now she is the happiest little girl and never stops smiling. Emersyn just turned 4 and is as sassy as they come. She will continue to prove that odds are meant for beating and nothing is going to slow her down! We never go anywhere that people are not commenting on her beautiful smile, her passion for life that radiates from her, and her love for everyone that is truly so inspiring. So yet another blessing this is for us... We can not thank you enough for reading our story! But most of all we Thank our Family, Friends and God for all he has Blessed us with!!
With Love…..
Now onto Emersyn Grace-Anns’ story….
Emersyn Grace-Ann started her fight for life at 24 weeks in utero. The doctors could not figure out what was going on in her bloated abdomen and sent us directly to Dr. Roger Wallace, a Parenatologist. We found ourselves so confused, this was supposed to be a 5 minute routine ultrasound, and then we were facing the fact that our baby was not going to live. Our lives took a drastic change within 24 hours, they informed us that she had a 0% chance of survival as her kidneys were failing due to fluid backup. We refused to settle with that answer. Our doctor decided as a last resort that he would try to perform a stint surgery on her, this is a technique rarely used because risk of puncture is so high, the survival rate is only 10%. Laparoscopically they go in through the mothers stomach, into the amniotic sack and into the fetus’s abdomen to place the stint. This usually causes so much distress that the mother's body will go into labor and the baby will be stillborn due to fluid/amniotic issues. Emersyn was the FIRST case in Montana for this procedure. This is when the overwhelming odds she would beat just got started. Emersyn proved to be strong and she went through the surgery with absolutely no complications. The doctors could not believe it! This was the day we knew we had a true fighter on our hands.
During the next 2 months we had appointments every week, driving 3 hours each time, (with Emersyns' big brothers, 14 month old twin boys in tow). To our surprise within 6 weeks she had pulled the stint out, so we were faced with the same risks all over again. She surprised them again by staying nice and still with complete cooperation. This time Dr. Wallace placed two stints for safety measures. At 35 weeks complications kept arising; her kidneys were shutting down, so we were flown to Denver as our doctors in Billings knew they could not handle her case and she was showing signs of distress, she was not full term and possessing a lot of complications. The doctors in Denver had never seen a case like this and told us she was surely going to be a silent birth (similar to a still birth), and we definitely would not be taking her home. I prayed that my husband would get there before they took her. He drove all night, non-stop for 10 hours from Montana, bringing our 16 month old twin sons, arriving with 12 minutes to spare. I was so thankful to see a familiar face and have him there.
On August 30, 2011 at 9:21 a.m. Emersyn was born, she did not cry or make a sound. The doctors rushed her away and my odds were slim to none that I would ever see her alive again. Within her first 24 hours she had 3 surgeries and stayed in the NICU trying to reach a stable point with the use of so many machines and medical tools. I never knew there could be so many IV's in one tiny body. I was finally able to see her that night and there's no other way to describe it other than it was absolutely scary. Emersyn was born with several of the most severe birth defects. Wait did I say several? I sure did...There is a high association with other birth defects, especially spina bifida, which occurs in up to 75% of the babies with several conditions.
After 2 days and 28 doctors assessing her, they also told us she also was diagnosed with Vacteral Syndrome, which included a heart defect and a tethered spinal cord. The doctors told us it was the start to spinal bifida. I sat and wondered did I do the right thing by trying to save her or should I have just let her go when I was pregnant. It was so hard to stay strong as my husband distanced himself from reality as his coping method, I believe his military service in Iraq changed him and how he copes with heartache, and he says “if you don’t give it space in your heart it won’t hurt”. I knew I had to get it together and fight for my little fighter who was losing the battle. After 5 days I finally got to hold her and I was scared to death. It's sad to have a mother hold her newborn baby and be scared because of all the wires, tubes, etc. attached all over her as her life support. It was at that moment though when she looked at me, and I knew that she was meant to be here and no matter what we had to go through she was so worth the heartaches and fights we were coming upon.
So let me tell you about her odds, we were told she would never be able to sit up on her own, walk, talk, and would probably be tube fed the rest of her life. She would require several heart surgeries and at least 20 more surgeries to try and help give her some quality of life. Well, we have been through 11 surgeries the biggest being her open heart surgery and as of today they told us her heart is healthy but not whole when comparing her to a four year old. There will probably be more surgeries for that, but only time will tell as she gets older. We have done months of therapy, including physical therapy and OT, but hard work pays off and she has graduated all her therapies. She can run faster than most kids, she never stops talking, and loves to eat. She is an inspiration to those that want to give up and a true miracle! Her kidneys are functioning, yet continue to be very closely monitored. We continue to make bi-monthly trips to Denver Colorado, and when Emersyn gets sick it continues to be very scary as her immune system is so weak, due to all her daily meds. She has a long road ahead of her! We try to have some of the norms for a 4 year old, and we inevitability have some not so norms, but it's our normal! I see others who look down on us and remember that they don’t know her struggle and its complications and what matters is that we will take her the way she is. We believe in hope and will never give up! She will live her life full of many ups and downs as she will have to manage all of this on her own someday. But right now she is the happiest little girl and never stops smiling. Emersyn just turned 4 and is as sassy as they come. She will continue to prove that odds are meant for beating and nothing is going to slow her down! We never go anywhere that people are not commenting on her beautiful smile, her passion for life that radiates from her, and her love for everyone that is truly so inspiring. So yet another blessing this is for us... We can not thank you enough for reading our story! But most of all we Thank our Family, Friends and God for all he has Blessed us with!!
With Love…..