I always knew I wanted to be a mom someday, I wanted a bunch of kids to fill my home with love and laughter. Having siblings was a highlight for me growing up and even now as an adult. I always looked up to my older brothers and sisters, and my younger sister is my best friend. We have been through an enormous amount together. The good, the bad, and everything in between we have done together. Maybe its the traumatic events we have gone through that brings us so close? (Who knows, I am just lucky to have them. We all have ridiculous personalities that bring a humor to all the trauma we have endured too.) Almost all of us are parents and even our kids are close. But all of our journeys to become parents have been different, all have been hard, some harder than others. (Heads up before continuing to read, trigger warning- miscarriage and infant loss)
My parents had 7 children total, the first 4 were born within 5 years, their 5th child however was still born with Spina Bifida. Spina Bifida is a neural tube disorder that affects the brain and spine. His name was Adam. My mom was almost 20 weeks along when she had an ultrasound and the fetal heartbeat wasn’t detected, 4 days later that they did a c-section to remove Adam’s body. Adam was missing part of his skull and brain fluid, in addition to his spine being on the outside of the body. I can’t even fathom that traumatic of a birth, even with my own issues. My parents were advised not to have more children but whoops I came along. Then they planned to have my younger sister, because I needed a friend. I definitely do need her more than ever as an adult.
Infant loss is something that we know more about than most families should. My oldest sister lost her third baby from Trisomy 13 in 2006, a chromosomal condition that causes a variety of birth defects. She was 23 days old when she passed away. I was watching my two nephews at the time when we got the call from the hospital that her body was failing her. I drove my nephews to be with their parents, I well never forget the grief in my sister’s and brother-in-law’s faces. I watched them hold her body in the emergency room. I saw two little boys be sad but not truly understand what happened to their baby sister. They have always been an inspiration to me for my own future marriage and family. This was only the start of when I became closer to my family. I was 16 at the time and it hit me then I wanted to be around more for my siblings and nephews. I didn’t want to take anything for granted when it came to my family.
2014 was an extremely hard year. In February, my brother and his girlfriend went into labor around 26 weeks along with a set of twins. There were complications due to twin to twin transfusion. One twin was taking in the majority of the nutrients while the other was getting small remainders. While they were in the hospital I again was watching a nephew, my brother’s two year old little boy. I drove down to the hospital where they were in the NICU with my dad and nephew. One of the twins died three days after birth. I was there. I saw my brother go through those final moments with his son. I helped the photographer come in to do bereavement photos for them for the Now You Lay Me Down to Sleep program. My brother was devastated but had to be there for his tiny newborn in the NICU.
It was about a month later we lost our dad. This in itself was a very traumatic event in my life. The last time I spoke to him was at my nephew’s funeral.
In April of that year I found out I was pregnant for the first time. I had been married for about 3 years, finishing up my student teaching, and about to graduate from college. I was ecstatic, I thought it must be a sign from my dad that things are going to be alright. This year is going to get better. But less than a week later I miscarried for the first time.
I won’t forget that feeling. I was student teaching just a few weeks left. I was doing a poetry lesson. Something didn’t feel right. I went to the bathroom and saw blood. I told the teacher I was working with, she understood, and sent me home. I started bleeding and clotting more heavily. I remembered Googling everything I could about miscarriages and what to do. One website said to bring the tissue in a container to your doctors office. I packaged up something that passed through me, whether or not it was my baby I don’t know, I put it in a plastic food container. I called my doctor, they got me in right away and did an ultrasound. No signs of a baby. I gave them that container, not having any idea what would happen with it, if they would test it or whatever I don’t know. Then I went home. I never could have anticipated that would only be the start of my motherhood journey.
After I miscarried that first time in April 2014, my husband and I started actively trying. It took just over a year of trying before I found out I was pregnant again in May of 2015. I was just finishing up my first year as a 6th grade language arts teacher. I remember being excited but so very nervous. My doctor wanted me to get blood draws every few days to check for HCG levels, which did go up they way they were supposed to. But I had only known I was pregnant for a few weeks before I again knew something wasn’t right and I was bleeding. I was at school when it started, I went to the doctor again. I had an ultrasound. No heartbeat. I needed to go home and let it pass naturally, if it didn’t I would have to make an appointment for a D&C.
This time hurt, bad. The first time there were cramps like a period, this time was extreme pain. I couldn’t walk or move. I remember taking hot baths, just bawling and calling my mom asking her what to do because I hurt so bad. I rolled around on my stomach on a stability ball because it was the only thing that helped with the pain. I was up most of the night. I was about 10 weeks along. The embryo had passed through. I bled for a few weeks after. I felt like a complete failure as a woman who wanted nothing more than to be a mom. I was giving up that dream, I wasn’t going to hold onto the idea of being a mom. I took a few trips that summer, enjoyed life as best I could. A few short months later I was pregnant again.
In September of 2015, I was pregnant a third time. When I found out my husband was on a trip visiting his family and I was home because I just started my second year of teaching. I couldn’t contain my excitement or anxiety and told him via a video call. I again started having blood draws every few days to track those HCG numbers. Things were on track just as they needed to be. I went into my first ultrasound terrified. I hate getting ultrasounds. My first two experiences were already traumatizing. But this time, all was fine. There was a tiny baby with a strong heartbeat. A breath of relief was released at last. I was as careful as I possibly could be, I couldn’t wait to meet this baby.
Because of our family history of Spina Bifida and Trisomy 13 we had an early genetics screening that came back normal. Again another breath of relief because those were the scary things to me. We can keep looking ahead to the future with our baby. At 23 weeks along we were getting ready for our anatomy scan. I was still concerned there might be something, but I was too excited to learn the gender that I didn’t let the worries get to me. We did the full anatomy scan and found out our baby was a little girl. Zoey Rae. We had the name picked out for a while. I immediately went out to buy some baby girl things. The next day the hospital called and wanted to do a repeat ultrasound as they didn’t clearly see her heart. I didn’t think anything of it because she was wiggling around a lot during the scan. We went in the next week for the repeat ultrasound. There was still a strong heartbeat and she was moving. It was when the tech said, the doctor is waiting for you upstairs I knew something was wrong.
It was then we found out they could only see three chambers of the heart instead of four. They were going to send us to a perinatologist to do further investigation. It was at that ultrasound they told us that the left side of the heart was much smaller than the right, we were then referred to Maternal Fetal Concern in Milwaukee and a cardiologist at Children’s hospital. We had so many appointments throughout the rest of the pregnancy. I saw so many doctors. We were given the diagnosis of Hypoplastic Left Heart Syndrome (HLHS) and Total anomalous pulmonary venous connections (TAPVC).
As a first time mom its so scary and overwhelming. You also have this dreadful feeling of thinking you did something wrong to cause this. The further we got into my pregnancy with Zoey the diagnosis kept getting worse. I thought I hated ultrasounds before. I really hated them then. Even now having gone through two more pregnancies with extra ultrasounds I hate getting them done because they was so traumatic for me.
Zoey’s arrival was very stressful. We had no idea what the outcome was going to be. We had so many doctors in the room. I am not sure who was the OB even that delivered her. I was so caught up in the idea that she would potentially go to surgery directly after birth. She surprised us all though. She looked better than they anticipated. I get to hold her hand in the little incubator, Tom followed her to the CICU. And I stayed in the operating room and recovery room until they wheeled me off to my hospital room. It felt like forever before I saw her. I finally got to hold her very briefly before they took her down for an MRI, and at point she was already sedated with a paralytic. Knowing what I know now, I would have advocated for more time with her and more pictures. She went into surgery right away the next morning. She was never fully awake again. The next time I truly held her she was dying.
That is when I became the bereaved mom. All I knew was losing my daughter. I thought my chance at motherhood was officially gone. I’ve battled depression my whole life but nothing like going through the grieving process of losing Zoey. When she died I remember all I kept saying was I wanted to go with her. I honestly don’t know how I got through losing her. My husband was truly my rock with it all even though he was grieving too. It was only 8 years ago and everything was such a blur after that.
In January of 2018 I lost one of my favorite people ever, my Gram. In college I lived with my grandparents for about a year and I loved it. I got even closer to my grandparents. When I went to my classes she’d pack me snacks to take with and she almost always had something waiting for me when I’d get home. I also inherited my love of books from her (and her book collection after she died). It was devastating.
Less than a month later I found out I was pregnant with Remi. When we found out Rem was a girl I knew I wanted to incorporate my grandmothers name Marjorie Elaine. We chose to use Elaine because it is also my mothers middle name. We also wanted to honor Zoey, her middle name Rae. Rae comes from my husband’s middle name Ray, which came from his great grandfather Ray. We couldn’t agree on a middle name so we went with both. Remi Elaine Rae arrived in October of 2018. She is completely healthy (we triple checked her heart) and so unbelievably smart. I’m so proud to be her mom. She has been so extremely spoiled her whole little life, for very obvious reasons. We are incredibly over protective of her too.
Being Remi’s mom has been a bright light in a life of dark trials. I had given up on that dream of being a mom. Remi turned so many things around for me. It was a tough decision to make if we were going to have more kids. We didn’t actively try but we weren’t avoiding it.
My younger sister had a son 6 months after I had Zoey, I became pretty attached to him during that rough time. Then when I had Remi, she had a little girl 6 months later, they have been besties for 5 years. So when she became pregnant again in 2021. I did feel jealous because it took me so many times to be a mom and it comes so easily to other people. I was so glad to have Remi and I had to remind myself of my blessings. After Zoey died I became angry and bitter, most of that went away after having Remi. I still have moments like that but nothing like it was. I never want to go back to feeling that way. I chose to be happy for my sister, but it was hard. However, I found out I was pregnant for the 5th time in January 2022 and our due dates were only 6 weeks apart. But about a week later I miscarried the 3rd time.
None of the miscarriages were harder than others, but they way you deal with them are different. This one I felt was really the last chance. We didn’t want to risk any more issues. The more we thought about it we decided we were done. We had Remi and she was going to be an only child, but not our only child if that makes any sense. Remi however really wanted a little brother or sister. As the year went on she was more curious about my sisters pregnancy and had a hard time with the fact that her bestie was going to be a big sister. It was late summer when my husband and I made the decision to try until the end of the year. He was ready to stop trying but I wasn’t. We compromised (sort of). December was it. If I wasn’t pregnant again by the end of the year we were done trying officially. December came, I got my period. I gave up. I used my Christmas break to start getting rid of the extra baby stuff I had saved and offered it to friends that were having kids. I went through a couple really angry days between Christmas and New Years.
January I decided to start doing more things, we already had a trip planned to Florida in February to take Remi to Disney for the first time. As angry as I was was looking forward to just living life and doing more with Remi. However life had other plans. Mid January I had a girls night out with some friends, the next morning I realized my period didn’t come yet. I tracked my cycles pretty closely to try and get pregnant so I had a good idea on when it would happen. I had one test left in the drawer so I thought, what the heck I’ll test just to see. Positive. Well… shit… that was unexpected. Tom thought I was joking when I showed him the test that Sunday afternoon.
I went through the usual early appointments and hCG testing. Everything was looking really good. But I was so, so sick with this pregnancy. Twice early on I ended up on IV fluids from dehydration from being so sick. Even with barely eating, dehydration, and extreme nausea the pregnancy was healthy. I had the early genetic screening all came back normal and my sister planned a little gender reveal for me. Around 13 weeks my daughter pulled the “It’s a Boy” balloon out of a gift bag. She wasn’t thrilled for the first 10 seconds but her excitement quickly matched ours. We were so excited to add a little boy to our family.
My pregnancy got better with the nausea, but once I felt those little flutters of movement, I felt that it was non stop. He was very active in my belly, and now having him here its the same.
I take off work May 10th every year for Zoey’s birthday, it started as a day for grieving then it became a day to be together as a family and do something. Last year on what would have been Zoey’s 7th birthday we were going to go to the New Zoo in Green Bay. Because I already had the day off I decided to schedule the visit to the perinatologist. We really did not anticipate anything was wrong, there were so many ways the pregnancy was going well. We also thought our luck could not be that bad. My aunt lives only a few minutes from the doctors office, and watched Remi for us so we could go to the appointment.
As the ultrasound tech was doing the scan I was extremely anxious. I said to her “I know you can’t tell us much, but can you tell me if there are 4 heart chambers”, she said yes and showed me them on the screen. HUGE breath of relief. We finished the ultrasound, felt so much better and way more relaxed as we waited for the doctor to come in. We never anticipated for her to come in and tell us that the left side of his heart looks smaller. I was a shell shocked. I can’t tell you much of what she said after that because even having the anxiety of going to another ultrasound couldn’t have prepared me for learning about another one of my children having a heart defect.
We again started the journey of being referred to Children’s and Fetal Concerns and cardiologists. I am very fortunate that the cardiologist Ryder sees as an outpatient had first hand experience with Zoey, she was working in Milwaukee at the time, did Remi’s precautionary Echo, and now has Ryder. She’s very familiar with us and our family, she visits us even when we have been inpatient in Milwaukee but she sees us in Appleton.
Having Ryder has been a whirlwind for sure. My whole life has changed in so many ways having him. Watching his strength and resiliency through two open heart surgeries, a heart catheterization, and now this last hospital stay with for RSV, rhinovirus, and a bacterial infection. He has changed how I parent, and my future. My whole career I worked for isn’t even on my radar anymore. My kids have given me so many new outlooks on life and so many different
Even have gone through every thing with all three of my kids, I wouldn’t trade it for anything. They have shown me how strong I can be, and especially how strong they are. They are/were all so extremely resilient. Zoey taught me to be strong, kind, and giving. Remi has taught me how to really be a mom, have patience, and creativity. Ryder has taught me resiliency, bravery, and to embrace change. They will continue to inspire me to do more things than I ever thought possible. I am so extremely proud to be their mama.
Heart Bound Mama 