Why is No Foot Too Small important to us? There are many reasons but one of them would be this right here. Remembering and celebrating our angels.
We have 8 children. We have 3 living children, and 5 angels. Here is our story.
On October 28th, 2016, Alex and I had 2 appointments, both very standard for 12 weeks. One was an ultrasound, the other was a visit with the midwife now that we reached 12 weeks in the pregnancy. I remember the excitement we had on this day. It was just days before Halloween and I knew I wanted our pregnancy announcement to be carved pumpkins and mine, or course, having a mini pumpkin on the inside, “adding a pumpkin to our patch”.
I remember seeing our baby on the ultrasound and just feeling the biggest sense of relief because her heart had the perfect beat - the best sound expecting parents can hear. We then had our visit with the midwife and I remember an eerie feeling within the room as she looked at us. I ignored this feeling and chalked it up to her being new and started blabbering about how awful my acne was and asked what she recommended to treat it. She cut me off and said, we noticed something on the scan and we are referring you to Iowa city. She then went on to describe a nuchal translucency reading of 7mm and explained this was abnormal and that we needed a level 2 ultrasound with a specialist to help see what was going on with our baby. She said sometimes this can be something, sometimes nothing, but asked what we would do with this pregnancy if something was wrong. This became the quickest swing of emotions from excited and happy to scared and mad. The confusion that consumed Alex and I was almost unbearable. What could she possibly mean? We just saw our baby, she was fine. She had to be.
We got a second opinion locally, and the second doctor also agreed with the midwife and recommended seeing a specialist and performing a level 2 ultrasound in Iowa City. We spent most of that weekend googling abnormal NT readings and found a variety of things but clung to the idea that other babies who have this kind of reading just had some extra skin on their necks but were otherwise healthy and normal.
On November 2nd we had our appointment in Iowa City. We met with a genetic counselor first and she went over all of the scary things an NT reading of this magnitude could mean. After hearing it all, Alex and I agreed that a diagnosis of Trisomy 13 was the worst of everything we had heard for our situation. Everything else seemed to give a baby a chance at having a quality of life. We were hopeful leaving the genetic counselor that our baby would not have trisomy 13 because the chances were so incredibly low.
During our level 2 ultrasound we learned that our baby had significant issues. She was missing facial structures, she had no profile, and was diagnosed via ultrasound with holoprosencephaly. I remember being the woman screaming and crying wanting anyone to save our baby. She said this could not be done. Our doctor believed that even without genetic testing, all of her issues strongly correlated with the one genetic defect we didn’t want - Trisomy 13. It was hard to imagine as she still had a perfect heartbeat. We declined any type of genetic testing while our baby was still in the womb and left Iowa city completely silent and absolutely crushed.
After a few weeks we decided she deserved to be in heaven and not to suffer anymore. She was born November 18th, 2016
After she was born we opted to have genetic testing done and it was confirmed she did in fact have trisomy 13.
To this day, she is our only “known” daughter. Our sweet girl taught us so much about compassion and being thankful for the gift of a child and of a healthy pregnancy. We hugged our only living child at the time, Xander, tighter and cried a little more because she reminded us how precious life really is.
After we lost Grace, we waited a bit to get pregnant again. It took time for us to fully digest everything we went through with her. We realized that the naivety of pregnancy was stolen from us and that the road ahead for any pregnancy would be mentally and emotionally exhausting. But we also reassured ourselves that it would be rare for another “fluke” thing like that to happen.
We had our healthy rainbow baby, Jameson, on February 7th, 2018. He was beautiful and we felt so incredibly blessed. Alex and I agreed we didn’t want any more kids and that 2 was perfect. But when Jameson was 8 months old, God decided He had a different plan for us and we were pregnant. As we counted months we realized we would have 2 kids only 16 months apart.
I’ll never forget the day I took the pregnancy test. It was November 2nd, 2018, exactly 2 years after our Iowa City appointment for Grace where we discovered how significant all of her issues were. Ms. Grace was sending us signs, and I love that Alex was at work at the time and I called him and very sternly said, “get home now, I’m gonna puke”. He said, “whats wrong? Did Jameson have a blow out? Is there sh*t all over the house?” Oh Alex.
When he pulled into the garage I was sitting on the steps. He walked up to me, still outta the loop, and I handed him the pregnancy test. He looked at the test and without saying a word walked passed me to our bedroom, grabbed a pillow, and began screaming into it. 4 pregnancies in 4 years was definitely not our plan. At this point I was convinced I could get pregnant if I sneezed. It took a few weeks to absorb the news but eventually we became more excited and looked forward to the idea of potentially getting a baby girl.
Because we previously had a baby with a genetic defect, we were recommended to have genetic testing done around 12 weeks as well as level 2 ultrasounds done around 12 and 20 weeks in Iowa City as a precaution. If everything was normal with those tests we would be released from the University of Iowa's care and could continue care with just our local OB. Without hesitation, those appointments were scheduled.
I called our local OB office to establish care for this pregnancy but our provider was transferring hospitals and unable to take on “new patients” due to Covenant becoming Mercy One, so we couldn’t see her until her first day at Allen which was not until about 15 weeks gestation. We knew we were going to Iowa City for those precautionary tests so we were comfortable waiting, knowing if something was off physically or genetically with the baby Iowa City would catch it. The option to see someone else locally was given, but the OB doctor we wanted to see was the same doctor we had gotten the second opinion from with Grace, she was exactly who we needed through that tough time and after. She also saw us through Jameson’s pregnancy so there was a level of trust and understanding built and I was not comfortable starting over with someone who didn’t know our story/history.
12 weeks gestation for this pregnancy fell on December 24th. We hoped we would be able to sneak in our ultrasound and genetic testing before Christmas so we could announce our pregnancy and share the gender at Christmas. We were bummed they couldn’t squeeze us in on the 21st and our appointment ended up being December 26th, which meant no Christmas announcement. Hindsight, I believe this happened perfectly the way it was supposed to and spared us having to announce we lost the baby. We decided that since we missed the opportunity for a Christmas announcement, we would wait until another “cute” idea came to mind. Maybe wait until my birthday in January or Valentine’s Day. I figured it would just come to me at the right time.
At our appointment the baby looked PERFECT on the ultrasound. The technician doing our scan asked if she could use the images for her recertification. We agreed, and left our scan extremely satisfied and relieved to see a healthy baby. We met with our genetic counselor, drew blood, and sent it off to be tested with the added bonus of finding out the sex early.
We got the results: no genetic defects and BOY. We had gender disappointment, bad. We were shocked. We laughed. We cried. We even googled the chances of this being wrong or the chances of Jameson’s DNA still being in my blood and maybe that was the DNA they pulled eventually we accepted being an all boy family.
Early January 2019 I got really sick. Being sick plus a pregnancy is a double whammy because not only did I feel crappy, there wasn’t much I could take to feel better other than Tylenol. I was in so much pain one night during this illness that I thought I was miscarrying but figured I couldn’t be as I was never met with any bleeding. There is a text I sent Alex that still haunts me to this day. It reads, “if I had to guess what a miscarriage feels like, this would be it.” Dated Jan 7th, 14 weeks gestation.
My first appointment with our local OB at her new office was on January 15th and we were 15 weeks + 1 day gestation. I told her about how sick I had been the week prior, but how much better I felt now. We talked about the genetic testing and the ultrasound from Iowa City and that everything was looking great with this pregnancy. We moved on to hearing the heartbeat with the doppler but our doctor struggled to find it and all we heard was crickets. Our doctor explained that this gestation can be tricky to find so she offered to go over to the in-office ultrasound to take a peak. We thought it was pretty awesome to get another image of our baby!
We saw him and we saw blood flow, but with this being her first day she wasn’t sure how to turn on the sound to hear his heartbeat. She apologized, we said it was ok, and felt reassured because we all saw blood flow. At this point we had already been at the office for 2 hours and we were ready to leave. We had a sitter watching the boys and we planned on being back an hour earlier so we knew we needed to get moving. We told her it was fine and that she could move on to her last patient. We left the office confident that blood flow equaled a healthy baby.
Over the next few weeks I started feeling sicker and sicker. My blood pressure was rising, I had a headache I couldn’t get rid of, and I just felt a weird shift in the pregnancy. It was February 6th, 2019 and we weren’t due to come in for a 20 week check up until the next week. I battled back and forth with calling the office or just waiting for our next appointment. My gut told me to call and just get checked out so we wouldn’t be worried over the weekend as we had Jameson’s first birthday to celebrate.
Once we got to the office my doctor decided to run testing for preeclampsia because of my history. And although it would be rare for preeclampsia to happen that early, she wanted to rule it out. While we were waiting for the test results it was time to assure our minds that our baby was ok, regardless of how I was feeling. Once again, she struggled to find the heartbeat with the doppler so we went over to the in-office ultrasound machine. I had bit of excitement because we would get to see our baby again
As soon as the probe hit my belly we knew what we saw. My doctor excused herself and stated she was going to get another doctor to assist her. She brought in the second doctor and he took over running the machine and scanning my belly. We saw his face drop. Both of their faces turned pale. They looked at each other, then looked back at Alex and me. What was happening didn’t need to be spoken. The silence and scattering spoke for itself. The second doctor asked “how far along are you?” I replied, “18 weeks”. The next bit of time is immeasurable to me. They could have been looking around for hours or seconds, but what I remember most is what happened after they were done with the scan. They removed the probe from my belly and said “I am so sorry, there’s no heartbeat.”
I fell to the ground screaming, dry heaving, crying. Once again, begging for someone to save my baby, but this could not be done.
We had to confirm the death of the baby upstairs on a newer ultrasound machine. We prayed so hard on that walk from the office to the lab. We prayed that God would save this baby, that a miracle would be done. We were convinced this had to be a mistake, we already had a rare, fluke thing happen, it couldn’t be happening again. I prayed that this was only a nightmare, and that I would wake up soon. Unfortunately, we were living another nightmare. The tech upstairs confirmed that our baby passed 3 weeks earlier at about 15 weeks + 2 days gestation. 1 day after that initial appointment.
This is something I still struggle with to this day. I harbor a lot of guilt about that appointment. I wonder if we would have been persistent on waiting around to hear his heartbeat before leaving instead of worrying about getting out of there that maybe we could have caught something. I know I shouldn’t, but I play the “what-if” game but I can’t help but think that catching it earlier could have changed his outcome.
The next day we canceled Jameson’s party. A few family members and friends stopped by anyway even though I was reluctant to let anyone in. I didn’t know it at the time, but looking back now it was exactly what I needed - my village. I am so thankful for our friends and family who put their comfort levels aside to be there for us. It’s hard for anyone to know what to say or do during the thick of the storm, but the hugs and prayers and “togetherness” meant more than they will ever know
February 8th, 2019 Tye Butler was born. We found comfort knowing he was with his older sister in Heaven. We never got an explanation for his demise. They ran every test on him and every test on me, but nothing came back abnormal. For us that is the hardest part about this loss - not knowing why and having to accept, once again, that random fluke things happen. Second trimester miscarriages are so uncommon and we just felt cheated.
We held a memorial for Tye on February 11th, 2019. It was the most beautiful memorial during the middle of a blizzard. It was almost like what we were feeling internally was happening externally, and there was a strange comfort in seeing chaos and panic happening around us while we were living it.
In March 2019, I attended my first No Foot Too Small meeting and met a group of women who just 'got me'. It was here that I first shared the stories of Grace and Tye publicly. It was hard to make it through their stories without breaking down. As more women spoke, I slowly started feeling less alone, when only a month prior I felt like the only person struggling with loss. During this meeting the co-founder of NFTS, Robin, took pictures of my angel's footprints, which were later displayed at the annual NFTS Gala - these are gifts I will cherish forever.
Alex and I knew immediately after losing Tye we wanted to be pregnant ASAP. We got the 'all clear' to start trying again in March 2019. But March passed, no baby. And then April, no baby. And then May, no baby. This was odd because we had never struggled getting pregnant before. I downloaded the apps - all of them. I bought the products, more than I will ever care to admit. I changed my diet, eliminating alcohol and other things “known” to lessen the chances of conception. But all of this still didn’t get us the baby we so badly desired. Instead, the same story just kept repeating: new month, no baby. People kept telling us “just relax and it will happen” or “everything happens for a reason”. FREE TIP: don’t do that. Don’t tell people who are going through infertility to "just relax" or that "it’s supposed to happen this way". Infertility really sucks and telling someone to “relax” doesn’t cure infertility nor rid them of the heartache and pain that comes along with the monthly disappointments.
In November 2019, we learned we had unexplained secondary infertility and started a treatment plan. After getting pregnant easily 4 times prior it was hard to digest but we were hopeful that a baby was now within reach.
On January 6th, 2020, after 2 months of treatment we got our positive tests - yes, plural. Alex refused to believe we were pregnant so he went to the store at almost 10:00pm that night and bought a digital test to confirm what we had already learned from the 3 tests I had taken prior: Pregnant.
We started planning the future of this baby. We calculated the due date and started thinking about names. I called/texted my family members and some of my closest friends who knew we were trying and shared our news. It was finally our turn, our miracle
Then January 12th, 2020 happened. I woke up that morning with slight cramping. I went to the bathroom and there it was - blood. Tears immediately started falling. Every pregnancy is different, but for me I never experienced bleeding in early pregnancy before so I immediately panicked. I called the triage nurse and she assured me that everything could still be fine, and that sometimes people bleed in early pregnancy but still end up having a perfectly healthy baby. She told me not to lose hope.
That evening the bleeding got heavier so we decided to get checked out. The doctor confirmed my HCG levels were 3, basically a negative test. This doctor did not know us. He did not know our story. And he very bluntly asked, “so how is this different than any other period for you?” I was caught off guard by this question. I couldn’t believe he just asked me that. I felt ashamed for even caring about this pregnancy. His demeanor made me feel wrong that I was even there and completely disregarded the fact that 6 days prior multiple tests said I was pregnant. I handed him my phone and showed him the picture to prove I wasn’t crazy.
After this miscarriage, I became withdrawn from those around me and just started going though the motions of life. It was like I was standing still and things were just happening around me but too quickly for me to grasp or understand. I didn’t want to see anyone or leave the house because it seemed that everywhere I went someone was pregnant. I didn’t want to answer any calls or texts because it seemed like every time I looked at my phone, there was another pregnancy announcement. The pain and misery really started to take a toll on me mentally. Looking back now, I don’t know if this was a side effect of the medication I was on, but I was absolutely miserable and wish I would have asked for help.
6 days was all we got with you, sweet baby. 6 days and we had already fallen in love with you and planned your life. We will always wonder who you would have been.
Navy, Gray, and Beau were triplets.
After 4 cycles of failed fertility treatment we contemplated giving up on our dream of adding another living child to our family. The pandemic was quickly changing everything around us and life as we knew it quite literally flipped upside down. We were unsure if bringing a baby into this chaos would even be a good idea. We were given the option to cancel our treatment in Iowa City for March and we agreed that canceling would be the safest thing to do to protect our family and others by avoiding unnecessary exposures. We figured this was the sign we needed and knew it was time to take a break.
We were absolutely shocked on March 29th, 2020 when we got our positive tests - once again, yes, plural is intentional. We were excited, but also scared because not only were we battling our history of miscarriage, there wasn’t much data on how the virus affected pregnancy and baby’s in the womb and this made us nervous.
An ultrasound was scheduled for 7 weeks gestation so we could see the viability of the pregnancy and to see how many babies were in there. This appointment was on April 23rd, 2020. This was pregnancy number 6 for us and after countless ultrasounds during previous pregnancies our eyes became very skilled in knowing what we’re looking at. As soon as the scan started I saw 2 black areas. I said “oh my gosh did you see that!? There’s two.” as she continued scanning she started labeling the babies “twin A, twin B, oh and there’s a twin C...” We started crying, dry heaving, panicking.. How does anyone take care of three babies in addition to already caring for two other children!?
Our sonographer went and got the doctor to review the scans right then because she noticed something rare. In fact, the doctor said, “we’ve never seen this before”.
Triplet A was labeled a fraternal “singleton” baby, meaning it had its own sac and its own placenta. Triplet B and Triplet C were initially labeled identical mo-mo twins, meaning they were in 1 sac, sharing 1 placenta. We learned that because of this, Twin B and Twin C did not have a good prognosis, even without the additional complication of throwing a third singleton baby into the mix. This entire situation was very rare.
Because of my history of miscarriage and pre-eclampsia, they wouldn’t even recommend for me to try and carry 3 healthy singleton triplets, let alone a high risk triplet pregnancy. With all of this information their recommendation for our situation was a reduction at 11 weeks to save Triplet A and to protect my health.
So in all of 1 hour, we went in hoping to see 1 healthy baby, to seeing 3 babies with 3 heartbeats, to being recommended to reduce the mo-mo twins, but to also consider that in doing so this puts us at risk to miscarry Triplet A. We cried. It was an impossible situation. All three babies were at risk no matter which way you sliced it. We left with the understanding we would be back in a couple weeks to check on everyone’s viability and were thankful nothing had to be decided at this initial appointment.
On our drive home we called everyone who knew about our appointment and shared what we knew about the pregnancy. During our drive home our doctor called and shared they made a mistake. I thought, oh gosh, please don’t be another baby. They corrected their initial thoughts of mo-mo twins and said B and C were actually mo-di twins. This subtle change slightly increased their viability because they had their own sacs, but were still sharing a placenta. Still very high risk and still came with the recommendation to reduce at 11 weeks.
I reached out to a few members of No Foot Too Small to get advice and support. I wanted to try and find a way to save all 3. I knew that this decision was very complicated and my health and safety also needed to be factored in.. but after losing 3 babies previously, choosing their fates just didn’t seem like an option. We prayed that we would never have to make that decision.
In early may, I felt noticeably different and feared that we lost all of the babies because I didn’t “feel” pregnant anymore. I had a relief in the nausea/vomiting and actually craved food again. I called my local OB/GYN and she did an ultrasound. Unfortunately, she partially confirmed what I suspected. She did not see blood flow to babies B and C, only to A. She said there are limitations with the equipment they have locally in early pregnancies and that Iowa City would have to confirm any demise at this gestation. A few days later, our doctor in Iowa City confirmed that babies B and C had passed.
To say we had mixed emotions is the only way I can explain this. We lost two more babies. We were relieved we did not have to make any decisions about reduction but still mourned them very much. The light in all of this darkness was the strong beating heart of Triplet A and I like to believe that because of Navy and Gray, we got Beau.
I see stories about triplets on tiktok, Facebook, Snapchat, etc and it hurts my heart. It’s hard because even though our lives would be absolute chaos with 3 babies right now, it should be us. I wonder if Navy and Gray were boys or girls (who am I kidding, they were probably boys), and I wonder if they would have looked a lot like Beau Jay and Xan as well, or if they would have had their own look.
I will always look for signs of you, sweet angels.
IN HONOR AND CELEBRATION OF OUR ANGELS, DONATIONS CAN BE MADE HERE. ON BEHALF OF THE BUTLER FAMILY, THANK YOU FOR YOUR GIFT.