Hi, friends! Thanks for reliving this journey with me. I can’t express how much the kind words meant to Jordan, Warner, & me! I still can’t believe how similar many of our stories are & I wish I had you all when Jordan & I were experiencing loss.
This will be Part 2 of our journey & I apologize in advance as it is long winded, but I didn’t want to leave out any details. I am using this blog to share with others, but also as a way to catalog & document our experiences for my own family.
So I ended my last post regarding our Baby Journey with the surprise that Jordan and I found out we were pregnant, again, on Halloween of 2016! Seriously, we were OVERJOYED because the first time we got pregnant, it took 5 months. I did read, during that time, that it can be easier/more likely to get pregnant after the birth or a child or a miscarriage, as a woman’s body is already prepped and ready, hormonally and physically.
So there we were, barely 2 months post miscarriage, pregnant again. For me, it was a rush of different feelings: shock, excitement, joy, sadness, readiness.. you name it. Unfortunately, the most prominent feeling was fear; fear of losing another baby and having to cope with that. My doctor had told me I seemed “emotionally stable” enough to try for another baby… but, was I?
We told our friends and family right away, this time. We thought it would be easier for us to have people to share our sadness with and lean on, were we to have another miscarriage and our excitement that we were pregnant already!
I started out the pregnancy super nauseous & exhausted, exactly how I had ended my first one. I took Zofran 3 times a day to get through each work day & sometimes that didn’t cut it! My OB-GYN also had me start using vaginal Progesterone suppositories as soon as I got pregnant, thinking that may have been an issue during the first pregnancy. They probably helped, but I hated how they felt & the side effects weren’t great, either!
WARNING: This next part is a little graphic, so skip if not interested!
One day, while at work at 6 weeks pregnant, I sneezed and felt like I had peed my pants. I ran to the bathroom and discovered I was experiencing extremely heavy bleeding. I left work, called and told Jordan what was going on and then went home to call my OB. They said I could come in to have labs drawn to see hCG levels, but that they wouldn’t do an ultrasound until 8 weeks & if I was having another miscarriage, there was nothing they could do to stop it anyways. By that point, the bleeding had completely stopped & I wasn’t even spotting.
I had labs drawn a few times over the next week & my hCG levels were growing exponentially; FANTASTIC!
I got a call from my nurse to review normal finances related to delivery & she mentioned that there was a non-invasive blood test, called the Panorama, that I could have done to determine if the baby had any of a full panel of chromosomal abnormalities including Trisomy 18, Trisomy 13, and Trisomy 21 (Down Syndrome). Jordan and I discussed & decided we definitely wanted to have the test done for some peace of mind.
Two weeks later, the day before my 8 week ultrasound, I had another huge gush of blood while at work. I went home to lay down, positive I was going to miscarry again, and stayed in bed until my appointment the next day.
I arrived the next afternoon at my OB’s office, with Jordan, scared shitless about what we would see. We waited & waited & waited for over an hour when someone came and said their ultrasound machine was down & we would have to reschedule. Jordan explained that wasn’t really an option with what I was experiencing & asked what else we could do. They finally agreed to take us back and pulled out this 1980’s machine to do the ultrasound. It was SUPER out of date, but did it’s job. BABY WAS MOVING!
After the ultrasound, we met with my OB-GYN. He check the heart rate, felt around & asked if we had any questions. I told him the nurse had mentioned the Panorama & that we decided we wanted to move forward with it & here is how that convo went.
Doctor: Do you have a history of chromosomal abnormalities in either of your families?
Us: No, we just want as much information as we can get!
Doctor: Unless you are over 35 or have a history, the test is not recommend, as the chances are slim that the baby with have any of the genetic conditions it tests for. The test can tell you gender as well, is that why you are wanting it done?
Us: No, that is much less important to us. We want the test, thank you.
Doctor: Will it make a difference if the baby does have any of the conditions?
Us: That is none of your business, first of all. Secondly, the nurse recommend this test to us and told us it was non-invasive & low cost, so we want to have it done.
Doctor: Did the nurse tell you that I was her boss?
UGH, it was a terrible experience & we ended up requesting a new doctor, but we had the test done anyways & they told us we would get the results within 10 business days!
Even knowing the baby was currently okay, I struggled to connect with the pregnancy. I was constantly worrying that the baby wouldn’t survive & trying to protect myself from feeling as broken hearted as I had the last time. My mother-in-law & sisters were very encouraging and believed that this time around would be successful. We went home to celebrate Christmas with our families and decide to announce the pregnancy on social media on Christmas Day!
We got the call from the nurse with the results from the Panorama while we were still in our hometown. She said the results came back “Normal” and there was no evidence of any birth defects or genetic conditions detected, YAY! She also said she knew the gender and would call my friend to let her know! I had asked my lifelong friend, K, if she would be the one to find out the gender and fill the balloon with either pink or blue confetti to do a gender reveal while we were home. Jordan and I were both pretty convinced baby was a girl. All the gals at my office said Jordan was “definitely a girl dad” so I had my mind made up that’s what it was.
My mother-in-love threw the most BEAUTIFUL last minute gender reveal party for our friends & family. It was the perfect night & one of the most memorable moments of our marriage was finding out the gender of our baby! Here is the video reveal of the gender & name:
If the video didn’t work for you, it was a BOY & his name would be Warner Allen Fry! We were both so shocked & it took us a couple of weeks for it to soak in that we weren’t having a girl! My dad had three girls, so he was easily the most excited to finally have a boy in the family & posted a tiny Harley motorcycle picture on my Facebook that night.
I continued the next few weeks being nauseous and exhausted, barely able to eat anything. I actually lost 25 lbs during the first half of my pregnancy because I was so sick!
Fast forward a few weeks & I was scheduled for an ultrasound on a Tuesday morning. Jordan had gone to a basketball tournament that weekend & came back feeling sick on Sunday. Monday, he came home early from work with cold symptoms & a fever. He slept in the extra bedroom so we could avoid me catching anything. The next day, he had a pretty high fever and body aches. I called our doctor and told them I thought he had the flu (probz because I asked, like, 39 times for him to get the flu shot, but he “never got sick”). He left for his doctors appointment & I headed to our 15 week ultrasound, promising to take pictures & call him ASAP!
I had the same ultrasound tech I always had. Oddly enough, she was also the technician I had in the ER when I had the miscarriage. She pulled him up on the screen & I saw him moving around and flipping upside down. What a relief! He looked SO big & human compared to the 8 week “yolk” ultrasound! Then she started doing something I hadn’t seen before- the ultrasound lit up with many different colors. I asked about it and she told me it was showing the blood flow. I asked “how does it look?” & she told me the doctor would tell me how everything looked once he saw the images! I had a vaguely bad feeling, as she was the same person that told me “the doctor would need to tell me” what was seen on the ultrasound during our ER visit.
Regardless, my baby was huge compared to my 8 week appointment and clearly moving around, so I brushed off any “off” feelings. I was walked to a room to see my new doctor. I had started rotating doctors so that I would have met the entire team once I went into labor, so I would know the doctor delivering baby Warner. I heard a nurse and doctor talking outside of my door about “calling UAMS to schedule an appointment to see the specialist” and I felt bad for the woman in the room next to mine… she must be about to get bad news about her baby.
Dr. T then knocked on my door. He came in, shook my hand, & asked if I knew the gender. I replied, “Yes, a little boy”!
Dr T: Do you have a name chosen yet?
Me: Yes, Warner!
Dr T: Well, Warner is going to be an anomaly. I believe he has Gastroschisis, an abdominal wall birth defect.
I will never forget those words or the how I felt. It brings tears to my eyes now, just thinking about how completely broken I felt. We had done the Panorama, everything was fine 5 weeks ago- he must be mistaken.
He wasn’t. He showed me the ultrasound & where he could see Warner’s intestines, floating freely in my amniotic fluid. I was hysterical. It was February, so I was dressed for the weather. I started tearing my scarf and coat off in a state of panic. I was crying hysterically while Dr. T kept assuring me “this is the birth defect you want to have, you’d choose this out of all the birth defects- it’s usually easier to correct than a cleft palate”. I was mortified and screamed that I wouldn’t CHOOSE for my baby to have ANY birth defect. He told me the survival rate was over 90%. To me, that math added up to around 10% of the babies born with this condition don’t survive.
I remember bits and pieces of what the doctor told me. He said we would deliver Warner at 37 weeks in Little Rock at UAMS, so he could go directly to Children’s hospital for surgery. I would need to be induced early, as the chances of stillbirth for these babies goes up after 37 weeks. We would likely be with him in the NICU for 4-6 weeks (that seemed like a lifetime). Most babies don’t have any long-term issues once they go home. My pregnancy wouldn’t be any different than normal. “It’s as simple as putting the guts back in the belly & sewing it up!”, he told me.
He said I would have another blood draw, the “Quad”. It would test for Spina Bifida (as well as the other conditions I was already tested for, that came back “normal”), the posterior defect of Gastroschisis. He said it was very rare Warner would have Spina Bifida, but that the test would probably be positive since it was so similar to Gastroschisis.
I don’t remember anything else or having the blood draw. I remember feeling like I was scaring other soon-to-be mothers because I couldn’t stop crying, even though I was trying so hard.
I called Jordan as soon as I walked out. He answered & could tell I was crying & asked what was wrong with the baby. I kept asking if he had the flu. He did. I told him the diagnosis of Warner & he said he would see me at home ASAP.
I drove home, barely able to see the road through sobs and tears while on the phone with my baby sister, Maddie. She cried, too & that’s what I needed. I knew Jordan and my friends & family were going to try to be positive & look on the bright side of things, but I needed to feel sorry for myself & have something else tell me how completely fucked up the news was. Maddie did that, while also assuring me it would be okay. I am generally a pretty optimistic person, but this wasn’t the time for that.
I have been motherless for more years of my life now than I had her, but all I could think was, this would be a really good time to have a mom. Out of all of my grand life events so far- graduations, proms, breakups, my wedding day… the day I found out my baby was going to be born with a birth defect was the day I wanted her more than any other time in my life.
While at the doctor, my OB had also prescribed me Tamiflu & said I absolutely should not get sick. I went straight to the bedroom when I got home and started googling. I searched “Gastroschisis” and then “images” and I broke down. Was he sure 90% of babies survived this? It was pretty graphic & I imagined my baby born, nearly inside out. This wasn’t how I had imagined becoming a mom & I didn’t know if I was strong enough to do it. Everyone else gets to take their babies home the next day, why couldn’t I? I won’t be able to hold my baby or do skin-to-skin when he is born; how will he know who I am? Other moms get to recover in the comfort of their homes- I will be somewhere in Little Rock.
What if he dies? I thought this every single day for the next 4 months until he was born, though this is the first time I had said it out loud. I had nightmares & I was scared to tell Jordan about them, for fear that might make them come true.
It’s actually really hard to put into words how this news felt. I went from feeling so much joy about this pregnancy, to so much sorrow. The birth of your first baby (or any) is supposed to be the most exiting day of ones life. I had wanted that SO bad. This news caused me to fear the birth. Right now, Warner was safe inside of me. He was healthy & growing & we were normal, from the outside. Once he was born, there was only the unknowns.
Jordan came home and stood in the kitchen while I cried on the bed. He said it would be okay and we would figure it out. I kept crying. He had called his mom to come down & be with me, since he couldn’t.
I took the next day off work as a “mental health day”. I joined the group “Gastroschisis Babies” on Facebook and spent hours reading through other stories & looking at pictures. Some babies had G-tubes and could ever eat. Some babies had other birth defects. Some babies were in the NICU for years, some were home in 25 days. One in 3,000 babies is born with the defect. It is unknown what causes it, but it’s much more common in under-20 minority, mothers. I was a white 27-year-old. Why me?
I know this part of the journey isn’t as relatable to many of you, like the miscarriage was, but I am open to ANY questions. I will share the next part of our story in the next week or two.
Again, all LOVE & no sass, for now!
The thing that bothers me the most is that you didn’t have your mom😞 I hate that!
Oh Sarah, I’m so glad you’re sharing this. To see your beautiful family, you would never know that the journey to get here has been an emotional roller coaster. I just want to give you a big hug!