We woke up very early on the morning of March 18th. We had to check into the hospital in Cedar City roughly an hour and a half before we'd see her sweet face. I kissed and hugged Ben extra hard that morning, knowing that would be the last time I would see him as my only child. He was nervous and excited and also wished he could come too. Ethan came and spent the morning with him before school, which to this day we are so grateful for.
Driving to the hospital, holding Rob's hand and repeatedly saying, "We're about to meet our daughter" I was in and out of tears of happiness and excitement. I don't remember being nervous at all about the c-section, but I know Rob was. He is normally the rock of the family. He's reliable, calm under pressure, and already an amazing father. When it comes to pregnancy and childbirth he is the nervous one. To this day he describes himself as the "helpless bystander" since he cannot do anything but support me. He may think it's not enough, but I'll tell you what, it is. He has never been the guy to shy away from work, and definitely does not believe in woman's work. From the moment Ben was born he has done everything I do. I tell people he's done everything but give birth and breastfeed. It's true. He does everything right along with me. Not that we don't occasionally want to pass off the most recent poop diaper onto the other, or say "it's your turn" when that 5 page board book has to be read again. Let's be honest about how fun that can be.
I was prepped, hooked up to the fetal monitor and all the other stuff that the nurses do prior to a c-section. Rob donned his oh-so-sexy surgical hairnet, scrubs, and shoe covers. Let's not forget the face mask. Ohhh the face mask. At least they didn't ask me to wear one!
He strutted around the room modeling his outfit and made me laugh. He knows how to do that and knows when I need it. That time felt like it was dragging on. I was so ready to hold my girl.
We had planned for immediate skin-to-skin, delayed cord clamping, and a variety of other things I didn't know to ask for when Ben was born. My OB was wonderful and I had very little anxiety about myself. I just wanted to make sure Evie came into the world gently and with as much contact with me as possible.
I'd prayed for years that if we had another baby that I would be able to breastfeed. I tried so hard with Ben. He screamed every time I tried. I wish I knew then what I know now, and maybe it would've gone differently. Then again, maybe he is like his mama and preferred a bottle. I switched to pumping. It was fine at home, but where I worked at the time couldn't have been less supportive. We had to eat lunch in my boss's office, they made it known throughout my pregnancy how "weird" breasteeding was to them. I would turn off my lights, lock my office door, and brought a manual pump so I could be so quiet that they would leave and look for me. So I thought. What actually happened is they would start calling me, repeatedly knocking on my door, calling my cell, etc. Needless to say, I could never relax. It was so emotionally stressful and exhausting, my supply was dead within weeks of being back at work. It broke my heart. The switch to formula was awful and he tried several before finally tolerating what was then the most expensive brand. We struggled harder. There are so many things I would do differently if I could go back in time. Advocating and asserting myself, for starters. However, what did come out of that was an unwillingness to settle and bend to others' opinions the second time around. I was much more confident and sure of myself and what I wanted for Evie and I, and was ready.
When I was finally wheeled into the surgical suite, I felt this sense of calm wash over me, and not because of the epidural. I knew I'd finally meet her. I'd finally get to hold my perfect girl. I was so ready. The anesthesiologist came in and set up my epidural. If I remember correctly, morphine was added. I'm the type of person that sleeps for hours after a bendryl. One. So I immediately noticed I was nauseous, lightheaded, and very sleepy. When Ben was born I was wide awake throughout the procedure. When Evie was born, I was in a dream-like state until someone said, "she's about to come out, you should open your eyes." I did open my eyes. I saw her beautiful, squishy little face. I saw her eyes. They were closed, but there they were. The beautiful almond-shaped eyes characteristic of Down Syndrome. I knew immediately in that moment.
The delayed cord clamping happened, but the immediate skin-to-skin did not. Since she didn't immediately pink up, they put her on oxygen. Honestly, I am not sure how long after she came out that I finally held her. I was so groggy, but also so aware. So aware of what they were going to find. Finally, they brought her to us. Her tiny hands had a blue tint.
"She's so beautiful. Hello my baby!" I remember thinking this and couldn't tell you what I said out loud. I was so in love already. I remember the feeling of love more than the initial fear of what Down Syndrome would mean. The nurses took her back fairly quickly and they examined her. When I was back in my room and finally saw her again, she was already on oxygen.
I finally got the chance to breastfeed her. I remember praying that she'd latch well. She did. It seemed so easy. Then everything changed. Evelynn began turning blue, really blue. I unlatched her and the nurse took her. Immediately I began hearing my voice in my head, "I almost killed my baby! I almost killed my baby!" I was terrified. I'd been given this beautiful little miracle who I had prayed for and loved from the moment I knew she was coming, and I was going to be the reason she died? My heart broke. I blamed myself so hard in that moment as I begged the nurses and God to please let her be okay.
If you do a search for the definition of trauma, one of the first things you might read is from Oxford Languages: "a deeply distressing or disturbing experience. A personal trauma like the death of a child." There's a sick and heart-wrenching irony there for me, because I was convinced I might have caused her death while doing the very thing my body was built to do to keep her alive. Trauma has a way of altering reality. It can blur, omit, and hyperfocus on details, all at the same time. One of the hardest things I've ever faced in my life was the belief that I was going to kill my baby while trying to help her live. It may sound dramatic, but it is genuinely how I felt for a long time. Every single thing I would learn, think, and do over the next 9 months came with a voice in my head going "don't screw this up. If she dies, it's because of you. You're going to fail her. You aren't good enough for her."
Thanks, trauma brain.
My OBGYN was fantastically patient and kind. He told us that they suspected Down Syndrome based on certain features like her eyes, the little gap between her big toe and second toe, called a Sandal Gap. Her two smallest toes on each foot are connected at the base. This is called syndactyly and is common in Down Syndrome. Evie's is mild, as her toes are fully formed but connected at the base. She also had a little chunk of fat on the back of her neck. He said those are features that suggest Down Syndrome, but also noted that she did not have the palmar crease or other physical signs that he expected to see. He told me how beautiful and perfect she was, and congratulated me on my precious girl.
Somewhere in all of the blurred moments of that day the on-call pediatrician came in. He explained that they were concerned that Evies aortic arch would collapse, and if it did happen they were not equipped to do immediate open heart surgery on her. He explained this as he drew a picture, which helped my very hyper-aroused brain focus on something, as if I could be a better mother for her if I could understand what was happening. He told us that the bypass that exists in utero would close about 3-5 "hours" after birth, and they were concerned that her aortic arch could collapse any moment. We were well past 5 hours at that point and as we asked about that, the panic inside me rose to new heights and the tears streamed down my face. He explained that a flight team would be taking our tiny little girl to the children's hospital in Salt Lake City very soon, via helicopter.
A helicopter? God please. Please! "What if she never makes it there? Where are they? When will they be here?" All he could say was "as soon as they can." Being transported via helicopter signals a level of urgency like nothing else. Helicopters mean they need to get her from hospital to hospital without wasting precious minutes going to and from airports. So in that moment, I started to believe even more that I was going to have to say goodbye to the tiny, precious angel I had just met.
I held her as much as I could. I kissed her, held her close, and tried to be calm as she was in that period of time. Rob went and picked up Ben from school and brought him to the hospital to meet his sister and see me. We talked to him about what was happening, without divulging more than he needed to know in that moment. He was so gentle and sweet with her. I could clearly see the uncertainty on his face and also the love. Her big brother was there to protect her, to love her. So was my little boy who so desperately wanted to be a big brother, and also didn't understand what was happening.
A couple of hours ticked by and we all loved on Evie. She spent time in the nursery so she could be closely monitored. You want to know what will get a woman who just had major surgery out of bed the quickest? Put her baby too far away. I was up and walking hours after surgery so I could be where she was when she couldn't be in my room with me. One of the nurses on that shift had absolutely become my rock. She came in to check on me and I nervously asked her why the flight crew hadn't picked up Evie yet. After all, we were WAY past the 5 hour window by this point. She calmly said something like, "The bypass closes 3 to 5 days after birth, not hours. She's doing great. The crew will be here as soon as they can. They had to fly a little girl up to Salt Lake with a head injury."
Days? Not hours? Days? I asked if she was sure and told her what the pediatrician had told us. She may have assumed we heard incorrectly, or thought the doctor misspoke. I don't know which is true, but I felt some relief for the first time. The nurse also explained that Evie would be taken by airplane, not by helicopter. Not to minimize anything, but relief settled in a little more. Knowing they believed it was okay to be transported by ambulance to the airport, loaded on the plan, landing, and going from the SLC airport to the hospital by ambulance helped. I feel very compelled to write this: that day and over the next couple of weeks, our definition of "better" shifted drastically. It's not a huge leap from medical airplane to medical helicopter flight. In that moment though, it was a good step in a more hopeful and less fearful direction. Don't get me wrong, we were still terrified.
"Okay. She's okay." Rob kept trying to ressure me. I know he was working overtime reassuring himself too. I wonder how many times I looked to him that day, with tearful begging eyes, for reassurance that everything was going to be okay. Helpless Bystander must have taken on a whole new meaning that day. Between the two of us we worked to reassure Ben, and focus on how calm Evie was with him. Their bond seemed instant. I prayed it wouldn't be broken.
We figured out that Rob and Ben couldn't join her on the flight. In that moment, neither could I. So we decided that Rob and Ben would make the 4 1/2 hour drive to the children's hospital, and I would do everything needed to make sure I was safe to do the same the next morning. Then we got word that the flight nurses and crew had arrived. We went to the room where they prepped our sweet baby girl. She was wired with monitors, oxygen, and a line had been put straight into her umbilical cord.
One of the crew I recognized instantly. Kristi hadn't spoken in a while. When I saw her, I felt this relief that someone I knew would be with Evie. Someone who knew how much I loved my kids. She later told me she had no idea she was coming to pick up our baby, she just knew she was transporting a baby. I can never express the gratitude for her updates and letting me know that Evie was safe, calm, and okay. If you ever read this, Kristi, please know that you'll always have a place in my heart for being there for all of us that night.
The flight nurse encouraged us to snuggle Evie, and explained the process to us. I don't remember much about that. Someone took pictures of the four of us with my phone. Our first family photo. The three of us were puffy, red faced, tearful, and trying our best to smile. Evie was so calm. Looking back, I'd realize that aside from the medical issues that played their role, our girl was sure of one thing, "Mommy, I've got this. You'll see."
The time finally came for them to leave. I cried so hard as I watched them wheel her little incubator out. A part of me wanted to run after them. A part of me wanted to lie down. Another part of me wanted to fall to my knees and beg God to take me before her. For the first time, I felt what it was like to be the mother of two. I was torn between taking care of my son and being with my daughter. Oh yeah... and recovering myself. The therapist in me knew the latter would have to happen in order for me to take care of either of my babies.
Rob asked me what I needed as he prepared to leave for Salt Lake City. Tearfully, I told him I needed my mama. Rob and Ben left shortly thereafter. It was well after 10pm when they got on the road. I worried the whole time that it was too late for a drive like that, but I'm sure Rob was running on pure adrenaline all the way there. He told me when they got there that Evie was just fine and sleeping. No surgery was needed at that time. More relief. I told my nurse that I needed the description of whatever dog and pony show I had to put on for them to leave the hospital the next morning. There was no way I was going to spend a single day away from Evelynn.
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