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Christmas 2017 I was sick, could not handle food or drinks, I thought it was the flu. January 2018, I was still sick and struggling with food, people started joking about pregnancy, I shrugged it off and thought no way. We had a pregnancy in 2017 that we lost, shortly after discovering it. I had always struggled with weight and cysts and have been told on several occasions pregnancy was not going to happen for us. Finally, after a few more days of sickness, I decided to ease my mind and take a test, I shoved the test in my bag, ran upstairs to take the test, and when the results popped up, I couldn’t believe it; positive. I screamed from the bathroom, yelling at my husband. He was scared and started running up the stairs, unaware of what was going on other than I was screaming in the bathroom. I flung open the door and threw the test at him screaming “Look what you did to me!” We rushed to the ER to get it confirmed and make sure that if I needed any kind of hormones or assistance, I received it right away. It was confirmed, they said to come back in 2 days and get more blood work. We did just that, and later that day found out my numbers were increasing this time! We were pregnant!
Over the next few weeks, I went to the lab every other day to ensure my hormone levels were increasing and everything looked right, Jan 25, 2018 we heard our baby’s heartbeat for the first time. I was in love, head over heels for a human I had not even met yet. From there on, we announced, and had a normal pregnancy, until 20 weeks. At 20 weeks, I was at work when I experienced a weird episode of an extreme headache, dizziness, shakes and chills. I knew something was not right, so I went to my doctor. We did a urine test and checked my vitals, we then discovered I was spilling protein in my urine and my blood pressure was dangerously elevated, something I had never experienced before. They blamed weight, but we knew it was not. Even as a bigger woman, I was in good health, and never had a high blood pressure reading. After a lot of questions, several visits back for the same episodes and being upset with the blame being put on weight, we were sent to a specialist and monitored closely. From there out things got more and more rough. We were told we were not going to pass 39 weeks, then it was 38 weeks, then 37. My blood pressure would randomly spike, and symptoms would come and go. I was monitored biweekly, then they began twice a week visit with weekly ultrasounds, the baby was doing fine, small, but fine. In between appointments, if I had those “episodes”, I would have to go into the Labor and Delivery Triage, get monitored, and every time I was sent on my way. Between going to triage and being seen by my doctor I was getting checked between 2 to 5 times a week.
At 33 weeks, something changed. The headaches and upper right side pain was consistent, nothing helped the pain and discomfort. My BP was staying higher, versus the roller coaster thing it was doing previously. I went in for my regular check and told my doctor something was not right. I begged and pleaded for the doctor to stop and listen to me. Something was not right. The next week and a half, I was in triage 6 times for spike in BP, pain, and headaches. My next appointment just before 35 weeks, I demanded I was examined, refusing to leave until someone gave me a better answer. The fill in doctor I saw that time, stopped, listened, and told me she believed me. She sent me to triage, finally listening to me that something was wrong, I had another severe spike in BP and was admitted. We spent the next week in antepartum doing treatments of magnesium to maintain my symptoms and steroid injections to help our daughter. The doctor came in and let us know we would be induced 8/5/2018, at 35.5 weeks. They went over the risks of keeping the baby in the womb versus being born early, they were sure it was time and we needed to get her out, they assured us, she was safer out and with them, so we agreed.
August 7, 2018 at 7:36p our daughter Riley was born. She was small which was fine, we expected that, they placed her on my chest and my world was complete. Then she started struggling to breath, she was not getting enough oxygen and was not doing well. She was in respiratory distress and needed help. They took her from my chest and wheeled her out to the NICU and intubated her immediately. My bleeding could not be stopped and they were not even sure where it was coming from. I started to struggle with breathing, and my anxiety kicked in, on top of everything else. When they wheeled my baby out, using terms and saying she was not breathing, I started to get worse. I ended up passing out. I do not remember anything passed them removing her from my chest and calling for immediate assistance. My husband refuses to talk about the night our daughter was born because that night he was faced with losing his daughter and his wife, on the night that was supposed to be the happiest of his life. Eventually, we were both stabilized. I came to and started to do better. When I was stable enough, they wheeled me in to see my baby, a few hours later. After seeing her taken away, the first memory I have is seeing her in the incubator hooked up to the machines. She was surrounded my machines and making this almost whimper sound, that if anyone was breathing too loud, could be missed. I sat there in the wheelchair, silently crying, hands and face pressed against the hard plastic of her incubator, listening to the whimper, apologizing to her and my husband for failing them.
Over the next few days, they would try to get her off the breathing machines, but she was not tolerating it, her lungs were too weak. They did a procedure and injected medicine into her lungs. My husband watched the whole procedure as it was done in the room, he could not leave his little girl alone. I, on the other hand, could not stomach to hear or see it, so I waited outside. After that procedure, she started to do so much better. She began to improve and get stronger. We spent the next few weeks in the hospital with her. I still remember the heart breaking sounds of machines, both from my baby and the others around her. Finally, August 20th, we took our baby home. She is growing and getting stronger every day. She still has weak lungs, she gets every cold she encounters, but she is a fighter.
I found PSP a few months after going home and knew this was my calling, I was meant to help parents that must endure what we did. Our division was created in honor of our niece and daughter. Both born early due to preeclampsia complications. We decided to do this, because I very clearly remember the fear and loneliness. I remember sitting next to her, watching her every move, getting to know the nurses and how to read the machines. I still explain to people that, while in the NICU with your baby, everyone's life moves on. Yours however, stops, completely. Their life is continuing, yours is stopped in its tracks, watching our heart and soul fight for survival every minute of every day, and there is nothing you can do to help.
Riley and Sofia, if there is anything you two takes from this, please let it be that, yes you are small, but you are mighty, and there is nothing you girls cannot overcome. Your family stands beside you in everything, and hopes to honor you, your courage and your strength, by helping other families enduring the struggles we did. We dedicate all of the work we do, to the parents and families, that either have endured a NICU stay, infancy/pregnancy loss, or will endure any of these challenging events.
“When life gets hard, fight like a preemie.” -Unknown