I'm sure you guys can relate to the question: how much can one person take? 2018 has been the worst year of my life and I have never been so broken and tired before. This is going to be along venting session because I am going to tell my story, so please bear with me.
This year started off with such promise. I found out I was pregnant despite having PCOS (a hormone imbalance that causes cysts on ovaries and irregular cycles). My husband and I managed to conceive naturally, which was an unexpected and pleasant surprise because we were told I would need some type of fertility treatment. I was nervous because I am a full-time caregiver for my elderly father and I was worried how he would adjust to me having a baby in the house. I was excited, though. So excited.
My dad had a stroke, fell, and broke his hip shortly after I found out about the baby. Losing my dad was a terrible ordeal because so much of my identity was wrapped up in being a caregiver. If I wasn't pregnant, I think I may have ctb then. I didn't know what to do with myself, but I focused on my baby. She was the light at the end of the tunnel.
Three days before my 26th birthday I had my anatomy scan to check on the baby and we found out that my daughter's kidneys never formed properly. We were told we could carry her to term and bury her or terminate the pregnancy. I wasn't satisfied with that answer and I'm a pretty determined person. I did a bunch of research into what I could do to help her chances and I found a type of fetal intervention called amnioinfusions. Basically, they use a long needle inserted into the uterus to inject saline around the baby. With no kidney function, my daughter couldn't maintain the amniotic fluid around her which meant her lungs would not develop because she couldn't practice her breathing in the womb. The saline wasn't a perfect replacement because it doesn't have growth hormones, but it would help.
I found a doctor in another state who was a 9 hour drive away who would do them. I drove roundtrip once a week to have an amnioinfusion done weekly. After a month of treatments, the hospital I was getting them done at told my doctor she had to stop because it was "unethical" to try to save my baby when she would need dialysis and a kidney transplant within the first few years of her life. My doctor sent me to Cincinnati. I packed a suitcase, bought a one way ticket, and moved across the country alone.
My doctors in Cincinnati were amazing. I had a port put in so we wouldn't have to use a long needle for each amnioinfusion. I had the amnioinfusions three times a week. I lived at a Ronald McDonald House next to the Children's Hospital. It was incredibly lonely to be without my husband and dogs, but I knew I was making the right choice. My doctor thought my daughter was going to do amazing because she was a great size and her lung volume looked good.
My daughter was born on October 12th and she lived for 36 hours. The sacs in her lungs didn't develop, so her O2 levels kept dropping and she had high levels of CO2. Her little body just wasn't strong enough. I am thankful that I got to hold her for the end of her life and she passed away peacefully in my arms.
I can't do this anymore. I feel so betrayed by the universe. I did everything I could and it wasn't enough and now I'm left with empty arms and a broken heart. Logically, I knew that it was going to be a long shot. I connected with a lot of "kidney moms" who had gone through something similar. Very few babies made it past the first few months. Most of the babies were like my daughter and they only lived a day or two. Some made it to dialysis, but passed away from other complications. The few babies who made it of course gave me hope and my doctor really thought my daughter was going to be one of them.
I just don't know what the point is anymore. As of all of that wasn't enough, my husband wants a divorce because I'm "too hard to love." I think the only reason I haven't ctb yet is because I don't know who would take care of my dogs and I don't want to leave them. They've already lost my dad this year and that was hard on them. It wouldn't be fair for them to lose me, too. I'm tired and broken, though, and I don't know how much longer I can go on...
If you stuck with me through this long depressing post, please know that I really appreciate it. This is such a lonely feeling. I feel like no one wants to listen or they are tired of listening to me.
This year started off with such promise. I found out I was pregnant despite having PCOS (a hormone imbalance that causes cysts on ovaries and irregular cycles). My husband and I managed to conceive naturally, which was an unexpected and pleasant surprise because we were told I would need some type of fertility treatment. I was nervous because I am a full-time caregiver for my elderly father and I was worried how he would adjust to me having a baby in the house. I was excited, though. So excited.
My dad had a stroke, fell, and broke his hip shortly after I found out about the baby. Losing my dad was a terrible ordeal because so much of my identity was wrapped up in being a caregiver. If I wasn't pregnant, I think I may have ctb then. I didn't know what to do with myself, but I focused on my baby. She was the light at the end of the tunnel.
Three days before my 26th birthday I had my anatomy scan to check on the baby and we found out that my daughter's kidneys never formed properly. We were told we could carry her to term and bury her or terminate the pregnancy. I wasn't satisfied with that answer and I'm a pretty determined person. I did a bunch of research into what I could do to help her chances and I found a type of fetal intervention called amnioinfusions. Basically, they use a long needle inserted into the uterus to inject saline around the baby. With no kidney function, my daughter couldn't maintain the amniotic fluid around her which meant her lungs would not develop because she couldn't practice her breathing in the womb. The saline wasn't a perfect replacement because it doesn't have growth hormones, but it would help.
I found a doctor in another state who was a 9 hour drive away who would do them. I drove roundtrip once a week to have an amnioinfusion done weekly. After a month of treatments, the hospital I was getting them done at told my doctor she had to stop because it was "unethical" to try to save my baby when she would need dialysis and a kidney transplant within the first few years of her life. My doctor sent me to Cincinnati. I packed a suitcase, bought a one way ticket, and moved across the country alone.
My doctors in Cincinnati were amazing. I had a port put in so we wouldn't have to use a long needle for each amnioinfusion. I had the amnioinfusions three times a week. I lived at a Ronald McDonald House next to the Children's Hospital. It was incredibly lonely to be without my husband and dogs, but I knew I was making the right choice. My doctor thought my daughter was going to do amazing because she was a great size and her lung volume looked good.
My daughter was born on October 12th and she lived for 36 hours. The sacs in her lungs didn't develop, so her O2 levels kept dropping and she had high levels of CO2. Her little body just wasn't strong enough. I am thankful that I got to hold her for the end of her life and she passed away peacefully in my arms.
I can't do this anymore. I feel so betrayed by the universe. I did everything I could and it wasn't enough and now I'm left with empty arms and a broken heart. Logically, I knew that it was going to be a long shot. I connected with a lot of "kidney moms" who had gone through something similar. Very few babies made it past the first few months. Most of the babies were like my daughter and they only lived a day or two. Some made it to dialysis, but passed away from other complications. The few babies who made it of course gave me hope and my doctor really thought my daughter was going to be one of them.
I just don't know what the point is anymore. As of all of that wasn't enough, my husband wants a divorce because I'm "too hard to love." I think the only reason I haven't ctb yet is because I don't know who would take care of my dogs and I don't want to leave them. They've already lost my dad this year and that was hard on them. It wouldn't be fair for them to lose me, too. I'm tired and broken, though, and I don't know how much longer I can go on...
If you stuck with me through this long depressing post, please know that I really appreciate it. This is such a lonely feeling. I feel like no one wants to listen or they are tired of listening to me.
