Help for Isabel and Family
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Our Story:
They say that you are never handed more than you can handle. I think so far, we have done what we can with what we have. Our delt hand has not been easy but we have stuck together and made the best possible decisions for ourselves and our children. Follow along as we share our story with you. Our only hope is that somebody will read this and find comfort in knowing that they are not alone. Maybe it will provide some strength to those going through similar adversities.
I have been with my love for almost 10 years now. Together we have gone through many ups and downs. He had two daughters before we had gotten together. Their names are Kaitlin and Paige. I had one daughter named Kayla. We had been together for a few years when we got pregnant the first time. After only 9 weeks we suffered a miscarriage. Then we had gotten pregnant again some time after that. After being pregnant for 15 weeks, we were sent in for a level 2 ultrasound due to very low amniotic fluid. We found out that we were having a boy and that he was diagnosed with Potter's Syndrome. We were told that the chances of this happening in our family ever again was very slim. On July 4th, 2008 I stopped feeling our little boy Jacob moving inside me. On July 6th, 2008 we delivered our still born baby.
As you can imagine, we were devasted. Not long after Jacob was born we had gotten pregnant again. This time we were having a girl. We were sent for many tests and found out that our little Madeline was going to be born healthy. Though I must admit that we were very frightened. She was born with no problems and we got to take her home. Today, she is 5 years old, healthy, and the typical little girl.
In 2012 we had gotten pregnant yet again. We really didn't have any concerns at this point. We were told with the Potter's Syndrome that it would never happen again and then we had a healty baby girl. Concerns were low. The pregnancy went fine until the 35th week. My doctor got a bit worried when he discovered that the baby wasn't growing the way he should have been. I should probably add that during all the ultrasounds we thought we were having another girl. We were wrong. In the wee hours of March 8th, 2012 we were blessed with a baby boy. Only he wasn't your typical baby boy.
His name was Isaac. From the moment he came out to the moment he passed away he was a mystery to all that knew him. He lived to be 4 months old. He had congenital issues from head to toe and though most would have been treatable, he passed away from a massive apnea caused by a seizure at our home and later at the hospital. I remember all of it as though it were yesterday. He fought so hard to stay with us but couldn't over come the apnea and seizures.
Isaac had the following, just to name a few: microcephaly, apnea, seizures, hypogonadism, growth hormone deficiency, hypothyroidism, partial hypopituitary, 10q21.3 deletion, vocalcord paralysis, laryngomalacia, bicuspid aortic valve, failed hearing, optic nerve hypoplasia, single right pelvic kidney, cleft palate, hypernatremia, GERD, aspirations, rocker bottom feet, and a number of other things. But, by looking at Isaac, you would have never known he had all these little problems inside of him.
We spend 87 days in the hospital with Isaac trying to figure him out. One day, the doctors told us that we have one of two options: we either transfer him to a hospice house since there was nothing else they could do for him, or we bring him home.
Bob and I took many classes to be able to bring our son home. That is where he belonged. Isaac had to have broviac care, he was fed through a g-tube, he had to have a shot of growth hormone every day (we administered that to him), he was on many different medications, and his care was very intense. Though his care was difficult he belonged home with us and his sisters. We did what we had to do to make that happen. The doctors told us that it was likely that he would suffer from the ultimate apnea and not recover from it. They were right. On July 6th 2012, exactly 4 years after his older brother was stillborn, Isaac suffered from the last apnea he would ever have. We administered CPR in hopes to bring him back. 911 was called immediately and arrived within minutes. It had been several minutes that Isaac had not been breathing and we had to make the choice to either stop CPR or continue trying to save his life and get to the hospital via ambulance. Our other children were right there witnessing it all. We felt helpless. Finally, we told the EMTs to stop CPR. They took the bag off of his little face. At that moment Isaac took one big breath. There was not a dry eye in the house. All police officers and EMTs were crying right along with our daughters and us.
After seeing Isaac take that big breath we told them to continue CPR and to get us to the hospital. By the time we had reached the hospital and the doctors had evaluated Isaac, he had not been breathing on his own for over 50 minutes. We knew it was time to let go. We couldn't bare him to be in any more pain and endure any more suffering. We said goodbye to our baby boy. We all held him for awhile and cried. When the funeral home director came to take our son to the funeral home, Bob and I wrapped him in his blanket and helped the director load him into the bag that he was taken away in. We held yet another memorial for another one of our children that had passed away.
We are often asked how we cope with the loss of two sons. The answer we always give is that we take one day at a time and put one foot in front of the other. Everything happens for a reason. You never really do get over the loss of a loved one. You just learn how to live without them. The road is not easy, I assure you.
Shortly after Isaac's passing we found ourselves needing to keep our hands and minds busy. Otherwise, we would dwell on the cards that were delt to us and we knew we couldn't do that as we had other children that required our attention and needed our love. Bob started school to become a journeyman electrician and I started making cakes. I always explain the type of cakes that I do as the "Cake Boss" style cakes. Haha. That seems to help people understand that it isn't just regular cakes. We were doing well. Bob had finished his schooling and working and I was making 3-5 cakes a week. I know it doesn't seem like many cakes but it takes a great deal of time from start to finish to complete a specialty cake. All was getting back to normal.
Due to all the wonderful help we had gotten at Rainbow Babies and Children's Hospital, we had decided that we wanted to give back. Our goal was to take up 100 toys to the hospital in hopes that the children receiving them would forget why they were in the hospital, even if only for a short time, and play with toys that were donated in our sons' names. We started the Toys from the Boys Jacob and Isaac King Fund. We had our first benefit dinner last year. With lots of help from our families and local businesses, we were able to raise $4,000. We had a special prize entering for all of those people that brought in a toy to donate directly to the hospital. The dinner started at 5pm. By 6pm we had been put well over our goal of 100 toys. The turn out was great and we can not thank all of the people that had a hand it enough. We had decided that we wanted to do this every year. Make it a lasting memory for our boys and to teach our girls that even though their deaths were devastating, some good can come out of it.
We were unable to do the Benefit Dinner this year. I had gotten pregnant again. Of course we were put through many tests to make sure that the baby was ok during the pregnancy. After our 1st level 2 ultrasound we were sent to Pediatric Cardiology due to there being an issue with the baby's heart. We found out that the baby had Tetrology of Fallot and that the success rate of the surgeries that she would have to have was very high, 97%. We had come to terms with her diagnosis and started wondering if there were any other problems. After many level 2 ultrasounds and many many doctors appointments, we had seen a few other things wrong with her. She had lowset ears and a possible problem with her hands. We were to be induced on July 14th, 2 years after we held the memorial for Isaac.
On July 4th at 10pm I started having some little contractions. They were scattered between 3 and 11 minutes and were not too intense. No need for a hosptial visit just yet. At 5:30 am on July 5th, I started having terrible contractions. We started getting ready to head to the hospital. I jumped in a quick shower and all the sudden the contractions got horrible. By the time I got out of the shower and the time we got in the car, my contractions were 2 minutes apart and lasting for a minute to a minute and a half. We knew we had to deliver in Cleveland since they don't have the equipment here to deal with a baby with heart problems. This is a 54 mile drive. The whole way there I was having contractions that were terrifying, making me think we were not going to make it and I was going to have this baby on the side of the freeway. Bob drove with this in mind as well. He got me to the hospital just in time.
We pulled to the front of the hospital and told the valet what was happening. They got me a wheelchair and wheeled me as quickly as possible to labor and delivery. After presenting my ID and insurance I was wheeled to a room. I asked for some pain meds and was told that the doctor needed to check me first. The doc came in and checked me and told me that I was complete. Oh boy, here we go. We were wheeled into a C-section room in case we needed one. I had one nurse on one side trying to insert and IV. I had another nurse on the other side trying to get blood and insert and IV. I had the doctor telling me to push and we needed to get the baby out as soon as possible because her heart rate was going down. They were forced to use suction on her head because they needed her out quickly. As soon as Isabel Rose was born at 9:54 am (1 day before the 6 year anniversary of Jacob and the 2 year anniversary of Isaac's passing), they whisked her away to the next room and were forced to intibate her. Bob was able to go in and take pictures so I could at least see her before she headed to the NICU.
After I was moved to my room upstairs, I was able to go to the NICU and see my daughter for the first time. My immediate reaction was how much she looked like Isaac. Spitting imaging in fact. Many tests were being ran to find out what is wrong with our baby girl other than the TOF. The results started coming in and it seems thus far, Isabel Rose (we picked the middle name Rose because we have a rose bush in memory of Isaac and one for Jacob), has a lot more in common with her big brother Isaac than just her looks.
We believe that Isabel is having seizures as did Isaac, she has a heart defect as did Isaac, she has a recessed chin so did Isaac. Other things in common include so far: cleft palate, possible brain problems, the optic nerve is significantly smaller in one eye causing little eye sight or none, and requiring oxygen. Isabel may also have a deformed brain, the trachea and esaphogus might be connected at some point, and she is currently eating by OG tube. We do not have all the answers for our sweet Isabel yet. She has undergone many tests and all the results are not back. She has only been with us for 5 days. That is so much for a baby to go through.
Again, we are taking things one day at a time, one foot after the other. Just as we did with Isaac, we will take all the information that the doctors give us and we will make the best possible decisions for Isabel. We can't help but relive the days of Isaac as we look towards the days with Isabel. We can only hope and pray that our little baby girl will be ok.
A woman that loses her husband is called a widow. A man that loses his wife is called a widower. What is the term for parents that lose their child? We made it through the pain with Jacob. We battled through the heartache of Isaac. And now, we are faced with the horrifying journey with Isabel. There is not a word that can describe the pain, heartache, tragic event like losing your child or children. There is no getting over it. We have just learned how to live without our boys. And we pray that Isabel makes it through the rain.
Please follow our updates and walk along us as we take this journey yet again.
They say that you are never handed more than you can handle. I think so far, we have done what we can with what we have. Our delt hand has not been easy but we have stuck together and made the best possible decisions for ourselves and our children. Follow along as we share our story with you. Our only hope is that somebody will read this and find comfort in knowing that they are not alone. Maybe it will provide some strength to those going through similar adversities.
I have been with my love for almost 10 years now. Together we have gone through many ups and downs. He had two daughters before we had gotten together. Their names are Kaitlin and Paige. I had one daughter named Kayla. We had been together for a few years when we got pregnant the first time. After only 9 weeks we suffered a miscarriage. Then we had gotten pregnant again some time after that. After being pregnant for 15 weeks, we were sent in for a level 2 ultrasound due to very low amniotic fluid. We found out that we were having a boy and that he was diagnosed with Potter's Syndrome. We were told that the chances of this happening in our family ever again was very slim. On July 4th, 2008 I stopped feeling our little boy Jacob moving inside me. On July 6th, 2008 we delivered our still born baby.
As you can imagine, we were devasted. Not long after Jacob was born we had gotten pregnant again. This time we were having a girl. We were sent for many tests and found out that our little Madeline was going to be born healthy. Though I must admit that we were very frightened. She was born with no problems and we got to take her home. Today, she is 5 years old, healthy, and the typical little girl.
In 2012 we had gotten pregnant yet again. We really didn't have any concerns at this point. We were told with the Potter's Syndrome that it would never happen again and then we had a healty baby girl. Concerns were low. The pregnancy went fine until the 35th week. My doctor got a bit worried when he discovered that the baby wasn't growing the way he should have been. I should probably add that during all the ultrasounds we thought we were having another girl. We were wrong. In the wee hours of March 8th, 2012 we were blessed with a baby boy. Only he wasn't your typical baby boy.
His name was Isaac. From the moment he came out to the moment he passed away he was a mystery to all that knew him. He lived to be 4 months old. He had congenital issues from head to toe and though most would have been treatable, he passed away from a massive apnea caused by a seizure at our home and later at the hospital. I remember all of it as though it were yesterday. He fought so hard to stay with us but couldn't over come the apnea and seizures.
Isaac had the following, just to name a few: microcephaly, apnea, seizures, hypogonadism, growth hormone deficiency, hypothyroidism, partial hypopituitary, 10q21.3 deletion, vocalcord paralysis, laryngomalacia, bicuspid aortic valve, failed hearing, optic nerve hypoplasia, single right pelvic kidney, cleft palate, hypernatremia, GERD, aspirations, rocker bottom feet, and a number of other things. But, by looking at Isaac, you would have never known he had all these little problems inside of him.
We spend 87 days in the hospital with Isaac trying to figure him out. One day, the doctors told us that we have one of two options: we either transfer him to a hospice house since there was nothing else they could do for him, or we bring him home.
Bob and I took many classes to be able to bring our son home. That is where he belonged. Isaac had to have broviac care, he was fed through a g-tube, he had to have a shot of growth hormone every day (we administered that to him), he was on many different medications, and his care was very intense. Though his care was difficult he belonged home with us and his sisters. We did what we had to do to make that happen. The doctors told us that it was likely that he would suffer from the ultimate apnea and not recover from it. They were right. On July 6th 2012, exactly 4 years after his older brother was stillborn, Isaac suffered from the last apnea he would ever have. We administered CPR in hopes to bring him back. 911 was called immediately and arrived within minutes. It had been several minutes that Isaac had not been breathing and we had to make the choice to either stop CPR or continue trying to save his life and get to the hospital via ambulance. Our other children were right there witnessing it all. We felt helpless. Finally, we told the EMTs to stop CPR. They took the bag off of his little face. At that moment Isaac took one big breath. There was not a dry eye in the house. All police officers and EMTs were crying right along with our daughters and us.
After seeing Isaac take that big breath we told them to continue CPR and to get us to the hospital. By the time we had reached the hospital and the doctors had evaluated Isaac, he had not been breathing on his own for over 50 minutes. We knew it was time to let go. We couldn't bare him to be in any more pain and endure any more suffering. We said goodbye to our baby boy. We all held him for awhile and cried. When the funeral home director came to take our son to the funeral home, Bob and I wrapped him in his blanket and helped the director load him into the bag that he was taken away in. We held yet another memorial for another one of our children that had passed away.
We are often asked how we cope with the loss of two sons. The answer we always give is that we take one day at a time and put one foot in front of the other. Everything happens for a reason. You never really do get over the loss of a loved one. You just learn how to live without them. The road is not easy, I assure you.
Shortly after Isaac's passing we found ourselves needing to keep our hands and minds busy. Otherwise, we would dwell on the cards that were delt to us and we knew we couldn't do that as we had other children that required our attention and needed our love. Bob started school to become a journeyman electrician and I started making cakes. I always explain the type of cakes that I do as the "Cake Boss" style cakes. Haha. That seems to help people understand that it isn't just regular cakes. We were doing well. Bob had finished his schooling and working and I was making 3-5 cakes a week. I know it doesn't seem like many cakes but it takes a great deal of time from start to finish to complete a specialty cake. All was getting back to normal.
Due to all the wonderful help we had gotten at Rainbow Babies and Children's Hospital, we had decided that we wanted to give back. Our goal was to take up 100 toys to the hospital in hopes that the children receiving them would forget why they were in the hospital, even if only for a short time, and play with toys that were donated in our sons' names. We started the Toys from the Boys Jacob and Isaac King Fund. We had our first benefit dinner last year. With lots of help from our families and local businesses, we were able to raise $4,000. We had a special prize entering for all of those people that brought in a toy to donate directly to the hospital. The dinner started at 5pm. By 6pm we had been put well over our goal of 100 toys. The turn out was great and we can not thank all of the people that had a hand it enough. We had decided that we wanted to do this every year. Make it a lasting memory for our boys and to teach our girls that even though their deaths were devastating, some good can come out of it.
We were unable to do the Benefit Dinner this year. I had gotten pregnant again. Of course we were put through many tests to make sure that the baby was ok during the pregnancy. After our 1st level 2 ultrasound we were sent to Pediatric Cardiology due to there being an issue with the baby's heart. We found out that the baby had Tetrology of Fallot and that the success rate of the surgeries that she would have to have was very high, 97%. We had come to terms with her diagnosis and started wondering if there were any other problems. After many level 2 ultrasounds and many many doctors appointments, we had seen a few other things wrong with her. She had lowset ears and a possible problem with her hands. We were to be induced on July 14th, 2 years after we held the memorial for Isaac.
On July 4th at 10pm I started having some little contractions. They were scattered between 3 and 11 minutes and were not too intense. No need for a hosptial visit just yet. At 5:30 am on July 5th, I started having terrible contractions. We started getting ready to head to the hospital. I jumped in a quick shower and all the sudden the contractions got horrible. By the time I got out of the shower and the time we got in the car, my contractions were 2 minutes apart and lasting for a minute to a minute and a half. We knew we had to deliver in Cleveland since they don't have the equipment here to deal with a baby with heart problems. This is a 54 mile drive. The whole way there I was having contractions that were terrifying, making me think we were not going to make it and I was going to have this baby on the side of the freeway. Bob drove with this in mind as well. He got me to the hospital just in time.
We pulled to the front of the hospital and told the valet what was happening. They got me a wheelchair and wheeled me as quickly as possible to labor and delivery. After presenting my ID and insurance I was wheeled to a room. I asked for some pain meds and was told that the doctor needed to check me first. The doc came in and checked me and told me that I was complete. Oh boy, here we go. We were wheeled into a C-section room in case we needed one. I had one nurse on one side trying to insert and IV. I had another nurse on the other side trying to get blood and insert and IV. I had the doctor telling me to push and we needed to get the baby out as soon as possible because her heart rate was going down. They were forced to use suction on her head because they needed her out quickly. As soon as Isabel Rose was born at 9:54 am (1 day before the 6 year anniversary of Jacob and the 2 year anniversary of Isaac's passing), they whisked her away to the next room and were forced to intibate her. Bob was able to go in and take pictures so I could at least see her before she headed to the NICU.
After I was moved to my room upstairs, I was able to go to the NICU and see my daughter for the first time. My immediate reaction was how much she looked like Isaac. Spitting imaging in fact. Many tests were being ran to find out what is wrong with our baby girl other than the TOF. The results started coming in and it seems thus far, Isabel Rose (we picked the middle name Rose because we have a rose bush in memory of Isaac and one for Jacob), has a lot more in common with her big brother Isaac than just her looks.
We believe that Isabel is having seizures as did Isaac, she has a heart defect as did Isaac, she has a recessed chin so did Isaac. Other things in common include so far: cleft palate, possible brain problems, the optic nerve is significantly smaller in one eye causing little eye sight or none, and requiring oxygen. Isabel may also have a deformed brain, the trachea and esaphogus might be connected at some point, and she is currently eating by OG tube. We do not have all the answers for our sweet Isabel yet. She has undergone many tests and all the results are not back. She has only been with us for 5 days. That is so much for a baby to go through.
Again, we are taking things one day at a time, one foot after the other. Just as we did with Isaac, we will take all the information that the doctors give us and we will make the best possible decisions for Isabel. We can't help but relive the days of Isaac as we look towards the days with Isabel. We can only hope and pray that our little baby girl will be ok.
A woman that loses her husband is called a widow. A man that loses his wife is called a widower. What is the term for parents that lose their child? We made it through the pain with Jacob. We battled through the heartache of Isaac. And now, we are faced with the horrifying journey with Isabel. There is not a word that can describe the pain, heartache, tragic event like losing your child or children. There is no getting over it. We have just learned how to live without our boys. And we pray that Isabel makes it through the rain.
Please follow our updates and walk along us as we take this journey yet again.
Organizer
Michelle Baruffa
Organizer
Geneva, OH
