On episode 26, we have Janilyn that lives in Arlington, Texas but is from a tiny town in south Texas only known for being George Straight’s hometown. She was 41 during her pregnancy with her daughter.
Janilyn’s journey to motherhood started over ten years ago. She says she wasn’t planning to get pregnant, but she was pregnant at 32 years old. She was shocked and scared. It took her a few days to come around. Her life wasn’t where she expected it to be. She had a house with her husband, but she didn’t have the job she wanted nor insurance. She became excited after a few days. About a week later, she started bleeding which was concerning to her. Her doctor said it was normal. The bleeding didn’t stop. Her HGC was 67,000 and the ultrasound showed two empty sacks. They continued to watch her HGC numbers go slightly up. She wasn’t sure what was happening. The doctor was asking her questions about her uterus she didn’t know how to answer. She began to cry, and he was frustrated and walked out of the room. She was given the option of a D&C but she didn’t know what to do. Her body thought it was pregnant for the next month. The hormones continued. She said she felt like a ticking time bomb because she didn’t know when it was going to happen. It all started with cramps and a little bit of spotting. By 1:00 am it had ramped up and she started having contractions. She mentions the rule of thumb that you should go to the hospital if you can fill a heavy pad in an hour. She said she definitely should have gone to the hospital, but she wasn’t sure because she was sitting on the toilet. She was in a lot of pain and didn’t know what to do. The process took several hours and then it was over. She didn’t know this was the process for a miscarriage. The research she found said it was just going to be a heavy period but that wasn’t her experience. She didn’t feel supported by the people around her. Her grandmother had a miscarriage, but she didn’t want to talk about it. She believes social media has helped with the awareness of miscarriages by talking about it more. It was hard for her and describes it as a life changing experience.
She waited until her cycle was regular again which was about a year. She didn’t have a problem getting pregnant the next few years. She knew when she was ovulating and was pregnant again right away. This time the doctor said she was too early for an ultrasound. She just wanted to go in now that she started spotting. She knew what it was. They told her it could be stress and did blood work. She got really hot at dinner that night and passed out. Her husband called 911. She woke up in a state of confusion. She was being taken out on a stretcher while she felt this immense pain in her abdomen. She screamed in agony all the way to the hospital. She’s never experienced such pain in her life. She knew something was wrong. In the ER, her HGC numbers were going down. She was rushed to surgery because of the internal bleeding that they found. The doctor performing the surgery came out to ask her husband how many kids they had because she wanted to do a hysterectomy. Her right tube ruptured along with the corner of her uterus which is called a cornual ectopic pregnancy. The pregnancy was located where the tube and uterus meet. It was her uterus rupturing that caused her the pain as she was leaving the restaurant. Her husband pushed to not have her do the hysterectomy. The doctor said there was a surgery that she’s never done before, but she could consult someone that has performed it before to help repair the uterus. He signed all the papers for the surgery but if it didn’t work, she would do the hysterectomy. If he didn’t sign the paperwork, the doctor told him she would die. She had to cut her open just like a c-section. It’s called a wedge resection. The uterus was shaped like a heart which is the reason for the miscarriages. The doctor folded in on what was left of the uterus and sewed it up. It’s a little smaller, but the surgery was a success. She also needed to have her heart-shaped uterus fixed with a different surgery. This is what her doctor was trying to tell her the first time she was pregnant.
Can we just give it time to get where it needs to go?
She had surgery to remove the septum to remove the heart-shape from her uterus the next year at 34. She assumed they fixed what was wrong and everything would be good for her next pregnancy. Her AMH was still good. Getting pregnant was easy as she was pregnant again shortly afterwards for the third time. This time there was nothing on the ultrasound. It showed nothing. It was another ectopic pregnancy. Janilyn thought the embryo might need time to move to the uterus. The doctor explained how it worked and suggested medication to end the pregnancy in her tube. She said it was the hardest decision she had to make. With all of the others, there was no decision to be made. She didn’t have the pain she had before. She struggled, and afterwards she started cutting herself. She wanted to feel pain.
They stopped actively trying. She found it depressing to try every month. Her fourth pregnancy happened when she was 37. She knew she was going to be an older mom, but she was happy with that. She had all of the symptoms of pregnancy that she didn’t with the others; the runny nose, breast tenderness, nausea. With all the signs, she was hopeful this was the one. Her husband knew this was the one too, but she also doubted it. A few weeks later she started spotting. It was what she was waiting for. She had friends tell her she needed to believe harder which she doesn’t believe would change the outcome. The doctor confirmed everything was in the right place this time and didn’t think it was a miscarriage. A few days went by, the bleeding increased and the cramps intensified. She knew exactly what was happening. The pain was bad and she was scared, so she went to the ER. She watched the doctor pull out fetal tissue and watched him throw it in the trash. She said it hurt so much. It wasn’t the physical pain, but emotionally she wondered how they were here again. She asked herself what the point was in even trying to save her uterus. She thought it might have been easier to not have a uterus at all, then the path of her family would be decided. The doctor thinks it was embryo quality that caused the miscarriage this time.
And I’m not too old to get pregnant?
They waited a few years to consider IVF. A doctor told her IVF wouldn’t work for her because of the scar tissue on her uterus and that embryos are attracted to scar tissue. She turned 40 in 2020. She assumed she couldn’t have a baby and wouldn’t get pregnant again. She wanted her only tube removed so it couldn’t happen again. She stopped talking about it with her husband. She just wanted confirmation that this chapter was over, so she got a second opinion with another doctor in 2021 about trying IVF. The fertility doctor was very confident it would work. She felt more hope with his words than she had in a long time. She even questioned if she was too old to get pregnant. He reassured it she was not and women older than her have gotten pregnant.
The first order of business with IVF was to get on birth control. She said it feels weird to be on the pill when the goal is to get pregnant. Then she started her STIM cycle of medication which is 10 days of a lot of injections. Then it was time to retrieve her eggs. They retrieved ten eggs. She originally thought ten eggs meant ten babies and told her friend she would transfer all of the embryos. After the embryos had the genetic testing, she had three embryos. The three female embryos were all chromosome abnormal. She felt like an idiot for wasting so much money on something that didn’t work. She didn’t even want to go to the follow-up appointment. The night before her appointment she went down the rabbit hole of donor eggs and convinced herself this was the right path. He told her yes it would work but, NO. He was confident it would be different with a second egg retrieval. She realized she went into that appointment sad and defended, but she left feeling confident and hopeful again.
For this second egg retrieval at 41, her doctor came up with a more aggressive protocol to target egg quality. She said there was more medication this time and she added CoQ10 supplement. This time she got 12 eggs and they were all mature, 5 embryos, and of those 5 embryos, 2 were genetically normal. She was very pleased with the results.
I wore socks that I got off of ETSY that say everything is crossed by my legs.
It was time for the transfer process. She started the medication, but she ovulated during this which she wasn’t supposed to do. The transfer was pushed back a cycle to December 15th. She assumed it was a sign that it wasn’t going to work. She wore socks she got off of ETSY for good luck that say ‘everything is cross but my legs’ to her transfer appointment. Her doctor thought they were funny. She said the transfer was over quickly. She waited for the embryologist to give her the ‘all clear’ and she was free to leave. She went home and slept for the next eight days. Eight long days later she got the call she was pregnant. Then her fears came back. For her, miscarriage is all she knows after she gets pregnant. Then at six weeks, the familiar spotting started the day she was scheduled to go in for an appointment. She almost canceled but she went anyway. She went to the appointment depressed, knowing what was happening. She laid on the bed for the sonogram expecting the worst when she doctored said, “well, there’s a heartbeat.” She had a subchorionic hemorrhage that caused the bleeding, but the baby was fine.
I didn’t know how to be pregnant and happy.
By week 9 the bleeding had stopped. Her fertility doctor told her nothing else was going to go wrong, and it was going to be a normal, boring pregnancy. And she does describe her pregnancy as boring, but she also says it was hard. She stayed with her fertility doctor until 13 weeks. This was the longest she’s been pregnant. She found it hard to be happy because she worried so much. She didn’t know how to assume everything was going to be fine. Creating the nursey took time because she didn’t want to create a place for someone that wasn’t going to be here. Even to this day it’s not finished. Seeing the doctor gave her confidence and she knew the genetics were ok because the embryos were tested. She says it was the best feeling of her life, though. She loved being pregnant. She said it wasn’t until 22 weeks until she could feel the baby because she had an interior placenta. She says it was silly, but she felt like it was having a little buddy around all the time. She would ask her baby what music she wanted to listen to that day… She didn’t have morning sickness. It felt good and it was fun and wonderful!
It’s hard to move on.
She broke down after the baby shower she received for her daughter. She saw all the gifts and the cake that had her baby’s name on it. She thought how her other babies didn’t get that, and that made her really sad. There is this idea that you’re going to go back to who you were before the miscarriage, but she doesn’t think it’s possible. It changes you. She says she forced herself to move on which developed into an eating disorder. She encourages others to cry and get it out. She thinks of the due dates for all of them. She would avoid the holidays because her first two miscarriages were around Thanksgiving. She mentally shut down until the new year.
She knew she was going to have a c-section because of her uterus. The way it was sewn up, there was a high risk of it rupturing again. The doctor decided to schedule it at 37 weeks, which was August 12th. Janilyn preferred it on the 13th because she liked the idea of her daughter having a Friday, the 13th birthday sometimes, but her doctor said no. She knew what the c-section recovery was like because she had the same surgery with her second pregnancy. The day before she had her emergency c-section, she thought she was forgetting someone’s birthday that was on August 3rd (which was the next day). She says she knows so many friends and family with August birthdays but couldn’t remember. That night neither her nor her husband slept well. She had an appointment that day on August 3rd. She had an ultrasound and her blood pressure was taken. The nurse practitioner asked her if she named her baby yet, and if she’d like to meet Aurora that same day. She was confused. She already had her day planned. They were going to get tacos, go to Ikea and then go home, work on the nursery, and lay by the pool for the rest of the afternoon. Her blood pressure was high and the fluid levels had dropped from 16 to 2. The doctor said if it was just one of those things, she would be put on bed rest, but two things meant she was having the baby today. She was told to go straight to the hospital and check in. She said it was so surreal as she was getting prepped for the c-section because it didn’t feel real. She didn’t even have her bags packed. She had a friend help get her stuff for her. She described it like she was watching a movie about herself, that she was in, but she didn’t have any lines or know what she was supposed to be doing. She was just doing what she was told.
She had a magnesium drip for her blood pressure. It wasn’t until it was about 4:00 pm that she went into the OR. She was a little scared to be awake during surgery. In the OR they were having a good time and she was relaxed. The OR staff even made a comment on her tan she says through a laugh. The big needle was a pinch and then it was all over. Then they took turns slapping and pinching her legs to make sure she was numb. The doctor came in and turned on the music. Her husband was scared, but she said it was a really good experience. The doctor held the baby over so she could see her, and that was it. They didn’t hear anything. She didn’t cry. She wasn’t worried this time. It was her husband that was worried. She was taken to the back of the room where the NICU team was. No one was telling them anything. Her husband tried to stand up, but the anesthesiologist stopped him. The room was quiet. They finally wheeled her daughter by in the clear plastic box, and the baby and her husband went to the NICU. Even when she got back to her room, she didn’t know what was going on. She knew everything was ok, though. Her husband finally came back to her room and explained that her lungs had collapse because she was early. They looked at pictures of their daughter together, but she couldn’t see her face because of the cap and tubes that helped her breath. Her friends came that night to bring her food, and they also went to the NICU to facetime with Janilyn so she could see her. Janilyn spoke to her daughter through facetime, and her daughter recognized her voice. She started to move around like she was looking for her. At that moment, she knew her daughter was going to be ok. It was then that she realized it was her daughter’s birthday that she thought she was forgetting the night before.
She held her daughter for the first time the next day when she got the magnesium drip removed. She was wheeled to the NICU. She stayed in the wheelchair while the nurse got her and set her in her arms. It was still hard to see her because she had on a mask and there were so many wires. Her eyes were swollen shut. Her daughter couldn’t see her, but she knew she was able to hear her. She would move her head in response to the sound of her voice. It was a magical feeling she said. She cherishes the photo her husband took of that moment.
She stayed at the hospital for a week after her c-section because of her blood pressure. It went up high and then dropped suddenly. The doctor tried several things to get it to go down. Janilyn even tried laying in the dark and listening to peaceful music. Nothing was working to get her blood pressure to go down. The doctor finally tried an ‘elephant’s dose’ of three different kinds of blood pressure medication. It was still high but it was good enough for her to go home. Her daughter wasn’t ready though, she stayed a total of 16 days at the hospital before she could go home. She is thankful for the few weeks before her baby came home because it gave her time to get her blood pressure under control. There was one time she almost passed out in the shower.
She says her recovery was good, but hard because of the c-section. It got easier after she started to move. She had extra pregnancy skin that laid over the incision weird. This didn’t allow the incision to heal properly. She had a yeast infection on her incision that hurt. Mentally, she was happy but terrified with anxiety. She learned a lot about caring for her baby at the hospital, but now it was just her and her husband at home. She still worried something would happen. She didn’t sleep well and would constantly check on her daughter to make sure she was breathing.
She tried to breastfeed and pump. She was having a hard time. She even had a lactation consultation that said it’s supposed to hurt. Then she saw a specialist because that didn’t help. The specialist took one look at the shape of her breast and said it wasn’t going to work. Janilyn’s connective tissue during puberty didn’t form properly. She said it might be possible to breastfeed for a few weeks, but that’s about it. She pumped a little more milk one breast at a time. Her daughter received some donor milk at the hospital, but the rest was formula. She worried because this was happening during the shortage. She found formula and her daughter took to it well.
Her daughter is 9 months old now, and she has one male embryo left. She had it transferred last week from the day this was recorded. During the transfer, the embryologist didn’t give the clear. The embryo was still in the tube. She had to do the transfer all over again. They said embryos are sticky. When she left the transfer, she is technically two weeks and 5 days pregnant. Since then, she’s been looking for pregnancy symptoms. She is waiting for the results.
Here are the topics we discuss in this episode:
- Miscarriage
- hysterectomy
- cornual ectopic pregnancy
- wedge resection
- heart-shaped uterus
- ectopic pregnancy
- AMH testing
- IVF
- subchorionic hemorrhage
- donor eggs
- interior placenta
- pregnancy after loss
- yeast infection
- breastfeeding
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