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Ash2015
member
Intro: Blood clot, strokes, seizures. Long.
Ash2015
member
First off, I'm not even sure that I do/will belong here, but I've read some of your stories that are so similar to mine that I thought it would be worth a try to post here. I'm so, so sorry that this story is so long.
My name is Ashley and I have a three-month-old son named Andrew. My pregnancy was fairly normal with only a couple of bumps. I had severe morning sickness and a PTL scare at 34 weeks because of a UTI, but neither of those things ever caused any complications. When I was 37 weeks and 4 days pregnant, I headed to the hospital after having painful contractions every 4 minutes for over two hours. When I arrived, I was 3 1/2 cm dilated and bleeding. They told me it was normal. My son's heart rate started to dip randomly (not with contractions) from the 130's into the hundreds. They told me that was normal. I was in SEVERE pain, screaming with every contraction. They told me it was normal and they sent me home at midnight after a couple hours of monitoring.
Long story short, I went home and screamed all night while filling pads with blood. They'd told me at the hospital that I wasn't in labor, nor was I going into labor. Everything is normal, they said, your baby is perfectly fine. Finally, I had to go back the next morning. I felt like I was dying. Into triage I went, yelling for an epidural. The nurses didn't take me seriously, even after I showed them a pad that I had soaked during the hour ride to the hospital. Then they started taking me seriously..an internal check showed that I was 9cm and my water broke. I swear people materialized from the walls. Into L&D I went. A heart rate check showed that baby's hr was 125..no wait, that was mom's, where was baby's? After 5 minutes of searching, baby's hr was only 80. Push, they said, we have to get him out! Less than 30 minutes since I got to the hospital, my son was born. His first Apgar wasn't good, but his second and third were great. He's okay, they said, he'll be just fine. Thank God.
I'd had a placental abruption, which is what caused the bleeding and his low heart rate. It was scary, but we were okay. For the next 27 hours, he was perfect. His wild birth story was told to visitors while I laughed about how I did it with no pain medicine. Then his eye twitched. I panicked, I'm a first time mom. It's probably just an underdeveloped nervous system, the nurse said, don't worry about it. Then his hand twitched. Then his arm jerked. It's probably nothing, but we'll observe him, the pediatrician said, don't worry about it. Then the NICU team wheeled him into my room. We're just going to take him down for some testing and observation, he started jerking again, the neonatologist said, don't worry about it. Three hours passed. They called me in my room. We're taking him for an MRI, he's having full-body seizures, the nurse said, you can worry about it now. I raced down to see him before they took him for the test. The nurse that wheeled me into the NICU didn't know his room number. I led her there by his cries. I'd only heard him cry once since he was born, but I knew his voice. I sat in a chair by his bed and let him hold my finger while they took blood. Then they wrapped him up and took him away and I was alone. Utterly alone. My mom was in my room and his dad was at work.
A doctor came in to talk to me before I went back to my room. We'll give him some medicine to stop his seizures, the doctor said, he'll be fine. When he gets back from the MRI, we'll call you so you can come back down, he said. So I went back upstairs. I'd called his dad and he was waiting for my when I got into my room. I broke down (not that I wasn't already sobbing). I got some things ready so that I could take a shower since I hadn't had one all day and when I was about to get in there was a knock at the door. The neonatologist and another man came in. The other man was a neurologist. Sit down, they said, we have some bad news. Andrew has a blood clot in his brain. He's had two strokes and the right side of his brain is damaged. How bad, I asked, will he be okay? Then the neurologist said a phrase I never thought I'd hear about my child: Cerebral Palsy.
The best way to describe what happened next is wails of agony. Not for myself, no, I did not cry because I had lost the picture in my head of a perfect child. Not for my family, no, I did not cry because they had to watch me suffer. I cried for my baby. I cried for his present and for his future. Will he be in pain? Will he be happy? He doesn't understand what is happening. My baby, my perfect baby, is hurting and I can't help him. I did not cry because he wasn't perfect. I cried because he WAS perfect and he didn't deserve what was happening.
The next five days while he was in the NICU were the hardest of my life. He was started on medicine for his seizures and they were controlled easily. A good sign. He went from being fed through an IV for 3 days to breastfeeding again flawlessly. Another good sign. He passed his hearing and vision tests. All good signs. Another MRI showed that the clot had dissolved and blood flow had been restored to the damaged areas. The best sign of all. He was released when he was six days old on a heart monitor (precaution, not needed) and Keppra to control his seizures.
Today, he is in physical therapy because he has a right-side preference, but they hope that that doesn't have anything to do with his strokes. He is also on the same dose of Keppra that has was on when he was released from the hospital even though he has doubled his birth weight. The last seizure he had was the day they started his medicine. We are hoping and praying for the best. His neurologist said that a diagnosis of CP at this point would be hard to make, so he won't make it unless Andrew shows obvious delays. He is going back for a follow-up EEG on April 8th so I hope that we will know more by then.
Thank you for reading this if you've made it this far. I'm sorry that it's so long, I just had a lot to get off my chest and his story needs quite a bit of explaining. I hope that I will learn a lot from all of you and that I can find the support that I desperately need here.
My name is Ashley and I have a three-month-old son named Andrew. My pregnancy was fairly normal with only a couple of bumps. I had severe morning sickness and a PTL scare at 34 weeks because of a UTI, but neither of those things ever caused any complications. When I was 37 weeks and 4 days pregnant, I headed to the hospital after having painful contractions every 4 minutes for over two hours. When I arrived, I was 3 1/2 cm dilated and bleeding. They told me it was normal. My son's heart rate started to dip randomly (not with contractions) from the 130's into the hundreds. They told me that was normal. I was in SEVERE pain, screaming with every contraction. They told me it was normal and they sent me home at midnight after a couple hours of monitoring.
Long story short, I went home and screamed all night while filling pads with blood. They'd told me at the hospital that I wasn't in labor, nor was I going into labor. Everything is normal, they said, your baby is perfectly fine. Finally, I had to go back the next morning. I felt like I was dying. Into triage I went, yelling for an epidural. The nurses didn't take me seriously, even after I showed them a pad that I had soaked during the hour ride to the hospital. Then they started taking me seriously..an internal check showed that I was 9cm and my water broke. I swear people materialized from the walls. Into L&D I went. A heart rate check showed that baby's hr was 125..no wait, that was mom's, where was baby's? After 5 minutes of searching, baby's hr was only 80. Push, they said, we have to get him out! Less than 30 minutes since I got to the hospital, my son was born. His first Apgar wasn't good, but his second and third were great. He's okay, they said, he'll be just fine. Thank God.
I'd had a placental abruption, which is what caused the bleeding and his low heart rate. It was scary, but we were okay. For the next 27 hours, he was perfect. His wild birth story was told to visitors while I laughed about how I did it with no pain medicine. Then his eye twitched. I panicked, I'm a first time mom. It's probably just an underdeveloped nervous system, the nurse said, don't worry about it. Then his hand twitched. Then his arm jerked. It's probably nothing, but we'll observe him, the pediatrician said, don't worry about it. Then the NICU team wheeled him into my room. We're just going to take him down for some testing and observation, he started jerking again, the neonatologist said, don't worry about it. Three hours passed. They called me in my room. We're taking him for an MRI, he's having full-body seizures, the nurse said, you can worry about it now. I raced down to see him before they took him for the test. The nurse that wheeled me into the NICU didn't know his room number. I led her there by his cries. I'd only heard him cry once since he was born, but I knew his voice. I sat in a chair by his bed and let him hold my finger while they took blood. Then they wrapped him up and took him away and I was alone. Utterly alone. My mom was in my room and his dad was at work.
A doctor came in to talk to me before I went back to my room. We'll give him some medicine to stop his seizures, the doctor said, he'll be fine. When he gets back from the MRI, we'll call you so you can come back down, he said. So I went back upstairs. I'd called his dad and he was waiting for my when I got into my room. I broke down (not that I wasn't already sobbing). I got some things ready so that I could take a shower since I hadn't had one all day and when I was about to get in there was a knock at the door. The neonatologist and another man came in. The other man was a neurologist. Sit down, they said, we have some bad news. Andrew has a blood clot in his brain. He's had two strokes and the right side of his brain is damaged. How bad, I asked, will he be okay? Then the neurologist said a phrase I never thought I'd hear about my child: Cerebral Palsy.
The best way to describe what happened next is wails of agony. Not for myself, no, I did not cry because I had lost the picture in my head of a perfect child. Not for my family, no, I did not cry because they had to watch me suffer. I cried for my baby. I cried for his present and for his future. Will he be in pain? Will he be happy? He doesn't understand what is happening. My baby, my perfect baby, is hurting and I can't help him. I did not cry because he wasn't perfect. I cried because he WAS perfect and he didn't deserve what was happening.
The next five days while he was in the NICU were the hardest of my life. He was started on medicine for his seizures and they were controlled easily. A good sign. He went from being fed through an IV for 3 days to breastfeeding again flawlessly. Another good sign. He passed his hearing and vision tests. All good signs. Another MRI showed that the clot had dissolved and blood flow had been restored to the damaged areas. The best sign of all. He was released when he was six days old on a heart monitor (precaution, not needed) and Keppra to control his seizures.
Today, he is in physical therapy because he has a right-side preference, but they hope that that doesn't have anything to do with his strokes. He is also on the same dose of Keppra that has was on when he was released from the hospital even though he has doubled his birth weight. The last seizure he had was the day they started his medicine. We are hoping and praying for the best. His neurologist said that a diagnosis of CP at this point would be hard to make, so he won't make it unless Andrew shows obvious delays. He is going back for a follow-up EEG on April 8th so I hope that we will know more by then.
Thank you for reading this if you've made it this far. I'm sorry that it's so long, I just had a lot to get off my chest and his story needs quite a bit of explaining. I hope that I will learn a lot from all of you and that I can find the support that I desperately need here.
This discussion has been closed.
Re: Intro: Blood clot, strokes, seizures. Long.
Welcome Ashley! You have found a very supportive board and there are a few CP mommas here. :-)
What a scary birth story. DS2 (3.5) has CP with a right sided preference also (noticed that at 6mos old). Let us know if yo
Welcome. My daughter has CP. She was in the NICU for 4 months and has been in therapy since she came home from the hospital. While no one wants to be here, this is a great group of ladies. Very compassionate and full of great in
Welcome! You're not alone... I had a similar experience. My daughter had a stroke from my labor as well (although we didn't know at the time). She was sent to the NICU as soon as she was born and started having seizures on day 3. &nbs
Hello!
I am glad you found the board. It is a great place to ask questions, get emotional support and just vent from time to time!
Andrew is adorable!
Welcome!
My oldest daughter (who is 3) had a stroke in-utero as well. I had a partial placental abruption at 22ish weeks. I was also sent home, after arriving to the hospital and my house looking like a m
My son, who is now 5.5 years old has a similar story. I had a perfect pregnancy until an ultrasound at 38 weeks showed slow growth so I was induced. When Noah was born they noted the cord was thin and was wrapped around his neck 2x but his apgars were
First, congrats on your little one!!
I also have a very similar experience. Had a totally normal pregnancy with DS2 until he stopped moving at 38w. I went in for a non-stress test and was sent straight to L&D where I had an emerge
Hi Ash,
Welcome.
It sounds like you've had a rough start.
I went through a similar experience. My son is now 3, and has only mild CP.
My advice is to keep a notebook, and write everything down. Be sure to bring it with you to a
Hi,
Huge hugs for getting through such a traumatic experience. Welcome to the board. My daughter had two small strokes either in utero or at birth and very low blood sugar at the time of her delivery. They found one brain bleed in the brai