Meet Lisa, mom to Ava, a micro preemie who was just 1 pound, 12 ounces at birth. Lisa is a Licensed Professional Counselor who, despite treating others suffering from depression, anxiety and PTSD, still struggled with postpartum psychosis and PTSD. Here is her story.
What were the circumstances surrounding your child’s birth?
I had a clot to the placenta. I was not providing any nutrients to my daughter for over a month. The clot caused me to have severe preeclampsia, which also caused my daughter to not get enough oxygen, so I had to have an emergency c-section. I was able to have surfactant administered prior to delivery.
What complications, diagnoses or surgeries did you or your child face?
I had an emergency c-section, during which I was bound very tight in case I had a stroke. My blood pressure was 225/150. My daughter Ava was born weighing 1 pound, 12 ounces, and at the time of delivery she didn’t require additional oxygen. She did have to have two spinal taps while in the NICU due to infections related to her PICC line. She had trouble with her feedings and gaining weight due to not having nutrients in the womb for such a long period of time. We were told that her little body had trouble knowing when she was hungry so she refused food for periods of time.
What type of support did you receive in the NICU or once you were discharged?
I am a therapist so I did know some of the resources that were available to us, but it was still difficult to process it all with everything that we had on our plate. We really had the support of the nurses while at the NICU. I had one nurse that I requested to be in charge of Ava’s care. She was in charge of her during the day shift, and she would keep the night shift up to date. We didn’t have a social worker or anyone that helped us navigate thru the questions and concerns. We just had to figure it out day by day.
How did your whole family cope with this experience? How are you all doing now?
This is a tough one. I had a very difficult time coping. I am a Licensed Professional Counselor (LPC) and specialize in treating others suffering from depression, anxiety and PTSD, yet I couldn’t help myself. I was dying inside.
I suffered from severe postpartum depression with psychosis. I had dreams of throwing my sweet child that I prayed and begged on my knees so hard to bring home out the window. I had extreme anxiety and suffered from panic attacks on a regular basis. I would walk the streets up and down at night to keep the crazy out of my head. I felt that I was going to die. I was given anxiety medication, but I was scared to take it. I feared to speak about my anxiety and thoughts in my head because I feared I would be called a bad mom or that I was too crazy to care for my kid. I knew that I was suffering from postpartum depression, and I knew the warning signs. I just couldn’t bear to admit it. If I admitted it, it made it real.
I did seek medical attention, but I was told that there was nothing “medically wrong” with me. I had tests run on my heart, and I was given more blood pressure pills. I later discovered from a new doctor that I have a blood clot contributing to my symptoms.
I have PTSD from the extremely high blood pressure and the symptoms I experienced right after delivering Ava. The PTSD has made its ugly appearance a few times over the years. It can be quite debilitating and is usually triggered by a medical issue or event. When Ava was eight, she got very sick and we couldn’t figure out what was wrong with her. This brought on a panic attack and extreme anxiety. I get a heaviness that feels like an elephant is sitting on my chest for days. I feel like I have lost all control and feel that I might be dying again. I want it to just end. It paralyzes me and my being.
I have learned to manage these situations now, but they still are quite frightening. I see a therapist. I have learned to process my grief, my anger and fears. I blamed myself for years for not being able to carry Ava to term and that I must have done something wrong. I learned that I did the best I could. I learned that I am stronger than I thought, but that it is ok to talk to someone even when you think you know all the answers.
My husband has been a rock for us all. He is grounded and patient. He had to find his own way through the madness: the possibility of losing his wife and his first born. We still continue to process this. We will never apologize for being overprotective and fighting for Ava’s care.
We were told that we most likely would never be able to get pregnant again and or that i would not be able to carry to term. We were blessed with a “do over” literally. I became pregnant three years later, and Taylor was born on Ava’s original due date. When I found out I was terrified. I changed OBGYNs and found an amazing doctor that caught my blood clotting disorder immediately and determined it to be pregnancy induced so I was put on blood thinners right away. I was on bed rest the last month of my pregnancy, but I made it full term! Taylor is Ava’s keeper. She protects her, she helps her manage the things that Ava struggles with due to her motor skill issues. She also healed that place in my heart that I thought was broken. She gave me hope again right when I needed it most.
How old is your child now and how are they doing?
Ava is 10 years old, growing up and learning her way in this world. When she was discharged from the NICU, we were told that we would learn more in regards to her developmental delays once she was around 6-9 months. She continued to struggle to gain weight. We used thickener in her bottles to help prevent her aspirating until around nine months, but she still really didn’t have much interest in eating. So I researched ways to help give her added calories.
She learned to walk around the age of 16 months adjusted. She was always so happy. We continued with the Synagis shots to help protect her from RSV, but she came down with it the month of September, a month shy of the shots. She was pretty sick, and we were warned it would be a tough road since she was so tiny. She was a strong but mighty little fighter once again and showed us she could handle it.
We started to notice some sensory issues around the age of 2 ½. Ava had a very hard time sitting still and focusing at times and was all around anxious. I wasn’t sure what was really going on. I just knew in my heart she was struggling with something.
Being an LPC, I had more of a tool box to work with when assessing her behaviors. Ava was so very interested in learning. During feeding therapies she would watch Starfall on the iPad, and at the age of 2 ½ she taught herself to read. This was amazing considering they told us that this sweet child might have difficulty with her vision and cognitive functioning.
Ava went on to learn more and more, but she was socially awkward. We went back to the doctor, who ruled out autism. So why was my little girl continuing to struggle? A fun day at the waterpark ended in disaster with a screaming kid running far away from the water in sheer panic. I stayed up nights researching and decided to make an appointment with an occupational therapist. Ava was finally diagnosed with Sensory Processing Disorder as well as having very low fine and gross motor skills. Ava went to OT every week for seven years. She worked hard! At the age of nine she finally figured out food and boy was it amazing! She has quite the appetite now and has caught up to her peers in height and weight. She is in third grade dual language since kindergarten and loves it.
Ava still continues to struggle with ongoing anxiety, but she is also learning to tools to help her the way that is best for her. We have an IEP set up with the school so they are working with her to help manage it. She continues to be a work in progress, but we are so proud of her!
What did you learn about this experience that you’d like to pass on to others?
I learned that it was very important to talk about my feelings. I really needed to process my guilt, anxiety and depression that was surfacing right away. I held it in for too long, letting it sink so deep it was a long process to peel away all the layers I had piled on.
Please talk to someone; don’t try to do it alone. I know that it is difficult, especially when so much time is devoted to going to and from the NICU and then trying to put your world somewhat back together once you are home.
I found that there are lots of support groups available. It was helpful for me to see that others were experiencing some of the same feelings/issues that I was going thru. I also journaled a lot. I am so glad that I did this now. I still go back and read it. It is a wonderful keepsake.
Is there anything else we need to know?
Take the time for yourself to heal. It will not happen overnight, but it does get a little bit better everyday. I also learned to never stop advocating for yourself and your family. I continued to push for answers to some of my medical problems. I also continuously advocate for Ava’s needs at school. I will not stop. I will not be quiet. I know she is and always will be small but fierce. She is our miracle, our heart.
Would you like to talk to another parent who has been where you are now? Request support today for a match with one of our trained NICU graduate peer mentors. We are here when you need us at any stage of your journey.
About Lisa Osborne
Lisa Osborne is a wife and mother to two beautiful girls, Ava (almost 10) and Taylor (6). She has been a Licensed Professional Counselor for 15 years, specializing in mental health and substance use disorders. Contact Lisa.