Story shared by Shelley Willis
I was scared to have you. I was scared of a repeat of what I had already been though getting your sister into this world. I was so scared that you would have to struggle to breathe like she did. I was scared that we would have to go through a traumatic birth all over again, and I would blame myself for being greedy and selfish for wanting you no matter the risks. I was so scared to have you. But I am so happy I did.
Your older sister’s premature birth was traumatic. It was unexpected. I was blindsided. She was tiny and I felt like I did everything wrong. I felt like my body failed me. Why did this happen I would ask myself over and over. Would it happen again? I can’t go through that again. No. Why did it happen to me? Didn’t I do everything the books and internet told me to do in order to have a healthy and smooth pregnancy and delivery? I don’t think I can have more kids if this is what my body will do. I can’t. I’m too scared.
In the bitter winter of January 2015, I suffered from an acute condition called HELLP Syndrome. To put it plainly, it is a very sudden form of preeclamisia. (Read more here https://www.preeclampsia.org/health-information/hellp-syndrome). My blood pressure had spiked extremely high, so high in fact, that my liver and kidneys had begun to shut down, but I actually felt (mostly) fine. Huh? And because I hadn’t had any medical help, my condition was worsening without my knowledge. All I felt was a heartburn-like sensation for 2 days. But at 33 weeks pregnant I couldn’t differentiate between what was my body, and pain, and what pain or discomfort was from the baby’s jabs and pressure. I just chalked it up to having drank a cup of coffee, which was rare for me at the time, and eating a size of pizza on New Years Eve. Yup, that’s probably why I have heartburn. But for 2 days?! I didn’t know. It was my first pregnancy. Wasn’t everyone uber uncomfortable by this point? But, in the back of my mind, I was also scared that something was going wrong. This, I learned later, were my Mommy instincts kicking in for the first time. But I am only 33 weeks along, and if something is wrong, that was bad, very bad for baby. No, I’m fine. Am I? I’m crying in pain, but I’m fine right?!
Your daddy thought I shouldn’t be in this much pain, and antacids, rest, walking (everything I could think of) all weren’t helping, so he suggested, no, insisted, we go to the hospital. It was New Years Day, and it was the last place I wanted to be. Ugh, ok. Fine, lets go then. They will probably just send me home.
Oh how VERY wrong I was. Well, it turns out, the pain in my chest, was actually an enlarged liver. My blood pressure was so astronomically high that the nurses in triage kept asking me if I had a headache. And I didn’t. Should I, I would ask. Why? I feel pretty fine, I think. And they finally responded by saying, “you should actually be having a seizure; your blood pressure is so high.”
Oh. Wow. Shit. What. No. No no no. Huh? <Deer in the headlights>
The gravity of how severe my condition was finally hit me. How had I been feeling mostly ok for so long with such a horrible condition. And how did it start? Where did this come from? What did I do to cause this to happen? Your Daddy has been at work for the past 2 days on 12 hour shifts and I could have had a seizure at home alone? Holy shit?! Oh my god. What? What now? Is the baby ok? How do we fix this? Can I take something? I’ll go on bedrest. No problem, just make it go away, and keep my baby inside.
No. None of that is an option. The only solution to bring my blood pressure down was heavy medication through an IV, and I needed to have an Emergency C section to remove your big sister RIGHT NOW. That was a no brainer according to the staff, and plans were put in motion to start the Emergency birthing process. Monitors, more IVs, paperwork, questions from staff, crying, more pills and IVs, more crying. And I really had no idea why the hospital staff was having me sign a waiver (in case anything went wrong)…. Because….aren’t things already going VERY wrong?! Get this baby out of me and please God let her be ok!! How big will she be? Will she be able to breathe? Will she cry? Will she have long term side effects from being born so premature? The questions were swirling, but I knew it had to be done and we needed to get her out sooner than later. Still a deer in the headlights, but again, my new Mommy instincts were calming me, and telling me, “relax, they know what they’re doing, just let them do their job.”
Your Daddy, with tears in his eyes, called your Grandma and Grandpa and a panicked Nana and Papa to tell them your sister was going to be born, and soon. She would be almost 7 weeks premature. Yes, she was coming. Now. Everyone was panicked. And I refused to see or talk to anyone. I had to keep it together for myself. I knew I couldn’t handle seeing the worry on everyones’ faces before I went into surgery. I have to try to keep some composure while we do what is necessary.
The C-section was quick, and I just kept praying your sister would be ok. How big was she going to be? Would she cry? Is she going to live? Will she have problems in the future because she was born so premature? More questions that no one could answer.
Your big sister did not cry when she was born. The room was quiet. There were at least 12 people in the operating room. Doctors, nurses, Medical students, NICU staff, and my Anesthesiologist – who stayed by my side for what seemed like forever. My blood pressure was not coming down, and I kept getting more doses of medication. Medication that would ultimately wipe my memory of seeing your sister for the first 4 days of her life. Medication I was so angry about needing. Medication that made me feel horrible, both physically and emotionally. Why did this happen to me? Why couldn’t my blood pressure come down? Why? Didn’t I just have a textbook PERFECT pregnancy? How could this all go so wrong in the end? Why is this happening to me? What did I do wrong? Can someone please tell me how this creeps up on you? How come all I felt was a small chest pain? What did I do to deserve this? Why me? What did I eat to make this happen? Did I bend over wrong? Was I too active during my pregnancy?
And the truth is, no one could give me an answer to any of these questions. And still, now years later, there are not many answers about how HELLP Syndrome randomly affects some and not others. All I have been able to find out is that it is so rare that there hasn’t been much research done on it to determine much of anything.
And, well, that’s great. Thanks for nothing. I’m still scared. And my medical team doesn’t have many answers either.
Your big sister was born weighing 4lbs 2ounces, and needed help to breathe. Her lungs were not quite fully developed and she was definitely covered with quite a bit of lunogo. She needed surfactant and a CPAP machine. And so much more that only your Daddy can remember. Your sister’s eyelids weren’t fully ready yet, and despite a full head of dark hair, she did not have any eyelashes yet. The finishing touches just hadn’t happened yet. She wasn’t done cooking yet. She wasn’t chubby yet. She wasn’t supposed to be here yet. I wasn’t ready. And neither was she. But my body failed and she had to be evacuated, and now we all have to figure out what to do. Oh my god. I cried. And cried. And cried. And blamed myself endlessly.
Thank goodness for amazingly compassionate NICU Staff. I cried daily in front of them, in the elevators and in my car. I cried every single day that I had to leave your big sister in the NICU and go home. I cried because my body failed me. I cried because your sister wasn’t ready to come out yet. I cried because I was so angry at my body. So so so SO angry. I cried a lot. I cried and cried. And refused to have any more children. My body can’t do it. I am a failure as a woman. My husband picked a dud. And to top it off, I also do not produce breastmilk. Yep, mine don’t work. It took 3 months of trying everything under the sun to make them produce milk. But they just don’t. I am a failure at that too. I can’t even feed my baby now.
Your big sister stayed in the NICU for 30 full days. Those were the longest and coldest 30 days of my entire life. I cried, no, bawled, every single day walking away from her incubator. I wish the NICU experience on no one. Although the nurses and doctors were great, leaving my first born child, who was just in my belly for 7 months, somewhere else, felt so wrong. So wrong. There was this constant inner pull to take her home that I had to suppress each and every day. She should be in my arms, the stroller or my belly I would think. Not in an incubator, in a building, in another town, being cared for by other people, even if they know what they are doing – she’s my baby, my responsibility, my blood, my everything. It was a lot for my brain to process. A lot is an understatement. It was a mountain to process. I was a brand new mom, and I have a tiny baby who needs me, but I can’t be with her. It was so so very confusing and overwhelming. And I was angry and frustrated at myself. It took me a long time to forgive my body. I am still working on it. This letter is a part of my road to forgive myself.
But my god, I love your Daddy. He is the BEST Daddy and my BEST friend. We have been through this together and I am so happy to have him by my side.
Your sister is a firecracker, as you know. And you strive to be like her everyday. Your Daddy and I see how much you admire your big Sister.
Once your sister starting meeting her milestones and actually surpassing them, and every doctors appointment went well, and she started gaining weight and thriving, I started to feel like I was handling motherhood.
It took me awhile to process what happened at the end of my pregnancy with her, and after a lot of research, your daddy and I decided to have you. We had been told that what happened before, could happen again, but the chances were slim. Your daddy felt that if it did happen again, we could handle it. Just like we did before. And we would be able to prepare for it, unlike before. Before, we were blindsided. This time, we would not be.
I found a MFM Doctor for your pregnancy, and I started on hormones as a precaution on her recommendation. I underwent a ton of screening tests, like Ultrasounds and Non Stress Tests to make sure everything was on track. I took my own blood pressure religiously at home, and managed my stress levels.
My pregnancy with you was once again, textbook perfect. No morning sickness, no cravings to speak of, no crazy weight gain, no water retention. Nothing.
But at 35 weeks my water broke. You were breech, and you had your feet at your ears, at quite a precarious somersault position, I knew all of this because of the weekly tests I was having. But you were perfect. You needed to come out via emergency c section, just as your sister did. But you were 5lbs 6oz and cried when you hit the cold air of the operating room. The NICU team was not needed, and you came home 3 days later, with us. I was elated. And I still am. You were the baby I was so very scared to have, and you proved to me that I didn’t need to be scared any more.
You and your sister make me so proud. So VERY PROUD. Both of you, your sister for her resilience and you for your tenacity.And yes, I suppose I am proud of myself too. For my strength in overcoming my fears of the unknown.I was scared to have you and you are the most sweet and soulful child. You are turning 2 and have surpassed milestones of some 3 year olds. You amaze me every day at your kindness and intelligence. I am so proud of you for being able to say your entire full name, using the potty and getting yourself dressed and undressed. You adore your big sister and I am so happy to be Mom to both of you girls. I am so happy I have 2 girls, and I hope you always remain close. Your big sister is heading off to Kindergarten very soon and is a spitfire. She is clever, witty, kind and has such a curious mind. She is stubborn, a born leader and so maternal and protective over you. She is still little, but she absolutely does not let that stop her from doing anything. You are both almost the same height and weight, despite being 2.5 years apart, but your big sister loves to play teacher and quiz you.
You girls are both so special to your dad and me. SO SPECIAL. Please do not EVER forget that. You are both incredible. We love you both. I love you both. Thank you for being in my life. You are my life. I was meant to be your mom. I love you.
Talking with a Counsellor, meeting another HELLP Survivor Mom, recognizing my own fear and a whole lot of research later, I am Okay with trying our luck again, and having a third baby.
Since I wrote this originally, my second daughter has turned 2, and we found out that we are expecting number 3 next year.