Our beautiful baby daughter came into this world on Sept. 19, 2014, unable to breathe, swollen and full of fluid. We knew after being at Lucile Packard Children’s Hospital for nine days that she was safer in the womb than out in the world, but we knew she had to be born and that she had about a 1 percent chance of survival.
It was a normal Wednesday for me. I was 32 weeks pregnant and dropping off my 4-year-old daughter, Lily, at pre-k. I worked part time then, and I took Wednesdays “off” to do errands, house stuff and be with my girl all afternoon. For a few days prior, I had been feeling off. I felt extra tired, swollen and different than I had before with both Lily and with most of this second pregnancy.
I had just been to the doctor a few weeks prior, but my gut told me I should call the office and check in. I called, explained my symptoms and they found me an appointment that afternoon. I clearly remember walking into the waiting room because I saw a friend who was also pregnant and I told her that I didn’t feel good. We exchanged hellos and I went back into the office. When the nurse placed me in the room I asked her, “I would like to check the baby out so can I request the ultrasound machine?” She said the doctor had it ready and I felt good about that—we will check on her, the doctor will tell me to rest more and I will be done and go pick up Lily. Well, unfortunately that was not the case.
The doctor came in, asked me a few questions and got the ultrasound machine out. Literally within two seconds, I knew something was very, very wrong. The way my doctor looked at the screen and then looked at me. She told me to breathe and assured me that we would work through this together, and then she got the ultrasound tech. I think time stopped. My husband was at work because I thought this would be a quick appointment and it was scheduled within two hours, so I called him on my way in and told him I would call him on my way out.
Time had stopped, the ultrasound tech, doctor and nurse all were in the room with me pointing, talking in a language I felt I couldn’t understand and making very serious faces. The next words out of her mouth were something like, “We need to take you across the street to get a more in depth ultrasound since we are seeing things we are not supposed to see.”
Across the street from Sutter Maternity in Santa Cruz, California, is a satellite office of Lucille Packard. I wish I never knew this but I do. The doctor consoled me, walked me out of the room and asked if I needed a ride across the street. I said no, I can drive, and she said they knew I was coming and to please go now and call my family. All I could think was ummm … this was supposed to be a quick check of my baby, what is happening? An hour ultrasound at the office turned into a check-in that night in Palo Alto at Lucille Packard Children’s in the antepartum unit.
What about Lily, what about work, what about my life?
The next three weeks of my life were a living hell and since then, life has never been the same. Non-immune hydrops, fluid in lungs and body cavities, antepartum, Mirror disease and more are not terms you ever want to look up on Google. Trust me. But I did. Sitting in the hospital at 32 weeks pregnant, away from my 4-year-old, praying this was a bad dream, you have time to look things up. Waiting. Praying. Asking why.
What do you mean you don’t know what’s causing the fluid? I am in one of the best hospitals in the world for the NICU and you are telling me you can’t fix this? Get in there and drain the fluid, make it go away. These are thoughts you have when seven doctors are staring at you (from med students to Chief of Surgery) every morning at 7 a.m. studying your “extremely rare case.” Every day for the nine days before she was born in the antepartum, I was hooked up to monitoring machines (almost 24 hours a day), had two ultrasounds a day, with doctors and nurses coming in and out. I prayed for a miracle.
Truthfully, they never told me she basically had no chance of survival but I knew in my gut and heart. Like I knew I should go to the doctor on Sept. 10, and check on my baby girl, I knew it was bad. The question now was when was she going to be born? Would I be here for the next two months until her due date and then have a vaginal birth only to not go home with my baby? Am I having a c-section scheduled? What is the plan? No one really knew. Breanna was literally one of the worst cases of hydrops the doctors at Stanford had ever seen. Non-Immune hydrops, by the way is a SYMPTOM not a CAUSE. WTH? You mean you don’t know WHY my baby has fluid all over her body and in her cavities? You mean you will never know why she has this condition and what caused it? Huh?
I learned that we don’t have all the answers, we don’t know how to fix things, we are human and imperfect and life is extremely precious. Before that normal Wednesday afternoon, nothing had shaken me to my absolute core. I had a pretty good, safe, “normal” life. The truth is, this experience did change me forever. And yes, I would never wish this on anyone and the grief is beyond anything you can imagine, but there are small changes that have made me a better person.
No, I don’t want my “angel in heaven” like people tell me I have. I want her here with me, with her dad and her sister. Since I can’t change the fact that she died, I try to take a sliver of good with me each time I think of her, which is every day of my life. Good like knowing that person in line at Safeway may have just lost their baby, or mom, or dad or friend. I wish everyone could have some kind of lesson in knowing that we are NOT “good” all the time. You know when someone says, “Hi, how are you?” and you answer “Good” just because? What if we met each other at reality:
“How are you?”
“Actually today is a great day.”
Or, “How are you?”
“Actually, I am really not doing well today.”
Lesson: We all have our “stuff” and yes, mine is heavy but so is yours. Don’t compare grief, but please meet people where they need to be met and not in some fake land like Facebook where everything looks perfect and pretty.
Breanna was born via emergency c-section on Sept. 19, 2014, in the evening. Even though I was at the hospital already, it was an emergency c-section as my vitals started to mirror her and things got very serious. Think of an episode of ER on the worst day in the emergency room. Probably 20 doctors and nurses in my room, bright lights, yelling, rushing, asking where my husband was.
As I had known in my heart that first day we saw the fluid, she was sick, very sick, but we got to hold her and be with her for four hours. She passed away in my arms with my husband, Rob, at my side. I smelled her, touched her fingers and toes, saw her hair, and held her tightly and told her how much she was loved. Life isn’t fair and my anger has lessened a bit. I believe in God, I believe in heaven, but I don’t believe my God wanted my baby in heaven. My God wanted my baby here on Earth with her mom and dad, her sister, and her friends and family to experience this precious life we all get to live. You are supposed to leave the hospital with a baby after giving birth.
We had a memorial service for Breanna about three months later, which really helped me continue my grieving. It was hard, but necessary. I needed to know she existed, she was real. I can’t say enough about the support my family and friends gave us during our long hospital stay, after her death and every day since. On her one-year anniversary, my family and friends came together at my church in Aptos and released balloons (probably 30). It was one of the most beautiful moments of my life as we each said something about her and how she has changed us.
The next morning, up the coast by Davenport at sunrise, my uncle and cousin were motoring up to go fishing. Out of the corner of their eyes they spotted a pink balloon floating on the water out in front of them. They slowed down and literally could not believe it as they were at the balloon release the day before. They took a picture and sent it to me. I cried for what seemed like hours. In this broken world that we live in, there is hope and there is reason to get up each morning. Whether it was a sign from Breanna, a sign from God or a random pink balloon floating in the middle of the ocean … it gives me hope.
A few lessons to pass on:
Thank you for letting me share my story. It is so important to know that infant loss happens all the time and to support each other in it instead of keeping it silent because it’s so awful to talk about.
Written by Jillian Holmberg (mom to Lily and Breanna)