In honor of May being Preeclampsia Awareness month, I would like to share my story, Sierra's story. I encourage any other women who have experienced this often overlooked and underdiagnosed condition, to speak up proudly. I have always thought it best to begin at the begining.  I warn you, this could be a very emotional and bumpy journey even for the strongest hearted reader. Here we go.

From the begininng my pregnancy was unusual. I found out in an emergency room, I went in thinking I had a kidney infection. I came out, "A little positive for pregnancy!?" After finding a family doctor and establishing that, yes, I was really pregnant, (on my 24th birthday nonetheless) I began adjusting to the idea of being a mom. Before I had even found out I was pregnant, I had been nauseated and puking randomly. Suddenly, it was all very obvious. I found out at 5 weeks and had not missed a period yet, so I was quite shocked, considering I was on birth control pills and had been told twice I'd never have children.

Morning sickness was a 24/7 ordeal for me. Instead of enjoying and craving delicious and strange things, I hated the thought of eating simply because I knew I would be running for the nearest toilet, trashcan, grocery bag, or car door I could find, the minute the food digested. I puked in parking lots, a McDonalds' drive thru, more street sides than I could list; and in front of so many co-workers, family members and complete strangers that pretty soon, I just had no shame. I worked in a call center and had no qualms about telling people, "I'm pregnant and I'm going to throw up. Can I put you on hold for a few minutes." No one ever said no or complained. Not one. 

 During the first 3 or 4 months of my pregnancy I lost twenty pounds. I thought that in itself was cause for major concern since pregnant women generally do the opposite of losing weight. My doctor assured me that it was within normal and not to worry, although he did comment that my blood pressure was a little higher than he'd like, however it was attributed to the antidepressant Effexor XR that I had been weaned off of immediately upon discovering my pregnancy. At 19 weeks I went to the ER again for vaginal bleeding. While there I got to see my baby for the first time, even though baby was stepping on my bladder and making me miserable and sick, I knew I loved that tiny creature more than anything on Earth. After scaring the crap out of me by saying things like, threatened mscarriage and placenta previa, they determined the baby and I were fine and sent me home. Thet put me on a week of bed rest and called it good.

After the week of bedrest, I slowly started to gain weight, and felt pretty good for a couple weeks. Sometime in February,  I began experiencing strange pains in my ribs, swelling of the hands and feet and my blood pressure continued to be high. I was given urine tests and blood glucose tests at the 20 week mark and everythingw as normal. My doctor instructed me to keep off my feet, lay off the salt and try to relax as much as possible.

 After dealing with the the ever-increasing pains in my ribs for a month, I finally couldnt take it anymore. On March 8, 2009, I went to the ER  complaining of the pain. I was admitted that night by my doctor for observation and testing. A day after being admitted, my doctor brought in an OBGYN to tell me that I had been diagnosed with pre-eclampsia and was now considered a high-risk pregnancy. As a student nurse attempted to insert an IV into my hand, I was told I had severe pre-eclampsia and would be put on bedrest in the hospital for the entirety of my pregnancy. I thought I was sitting at 28 weeks 4 days so, the idea of over three  months of bedrest was just terrifying. I was given a catheter and IV. I was put on magnesium, fluids and other medications to control the blood pressure and keep me from going into labor. I was not allowed to do more than sit up and lay down and rotate side-to-side. On March 11, 2009, sometime around 9pm, the pain in my ribs began to increase substantially.

 After two shots of something intended to reliveve the pain, not working, they finally informed me that I  may need an emergency c-section. An ultrasound was ordered to determine whether or not I could attempt natural birth. During the ultrasound, I was told that our baby was most likely female, and that she was breach and could not be delivered vaginally, if the pain did not subside I'd be undergoing a c-section very soon. Also, it was noted that my gallbladder was full of stones.

 After screaming in pain for almost 8 solid hours, Dr. Ratino came in and told me they would be prepping me for an emergency c-section. A nurse scrubbed my stomach and wheeled me out into the operating room. As I was moved to th operating table and strapped in, I realized that I  felt like I was being crucified on a cross. M hands and feet were bound on a T shaped table. Straps were added accross my chest and hips. I cried out in pain still. A nurse said, " It's ok, you will feel better soon," with those words I was out.

I awoke in a different room to a nurse pulling a tube out of my throat. My first hoarse words were, "Where is my baby?" The nurse told me she was ok and asked for her name. "Sierra Renee," was all I got out before the pain medications over took me. Sierra Renee Lewis was born at 7:28am on Thurday, March 12, 2009.

Some time later, Steve (Sierra's father and my future husband) and my mom came in and told me about our daughter. She was in the Neonatal Intensive Care Unit. It had been determined that she had been born at 27 weeks and 4 days. at 1 pound 12.8 ounces and 14.5 inches long, Sierra was (and to my knowledge, still is) the smallest survivor ever born at St. Luke's hospital in Sioux City, Iowa. Sierra was attached to a great many machines and IVs. She had a ventilator for the first few hours but was then switched to a C-PAP machine because she was breathing very well on her own.

For the first three days of her life, I saw her only in pictures that the NICU staff, Steve or my family brought to me. I was still in the ICU and needed transfusions of platelets and around the clock care myself. My pre-eclampsia had progressed into HELLP syndrome. I had no idea what any of this meant, I had never been warned or had the symptoms or warning signs explained to me. I was devastated that this had happened. I felt like my body had betrayed me.

When I read the information that hospital had given me, it was devastatingly easy to see that I had had preeclampsia for a while. It had not just come on suddenly. It had however, worsened quickly. Symptoms include hypertension, edema, proteinuria, weight gain, nausea or vomiting, abdominal (stomach area) and/or shoulder Pain/lower back pain, headache, changes in ision, hyperreflexia, racing pulse, mental confusion, heightened sense of anxiety, shortness of breath or chest pain,and a sense of impending doom. I had almost of those symptoms. It is hard to know whether to attribute my small weight gain to either normal pregnancy or preeclampsia, but it was there. HELLP syndrome is a further progressed state of preeclampsia.The acronym stands for H (hemolysis, which is the breaking down of red blood cells), EL (elevated liver enzymes) and LP (low platelet count).When it was explained to me, I was told that my liver began shutting down, causing the intense pain in my ribs. My blood cells broke dow, which resulted in me needing transfusions of platelets to help stop bleeding so I would die from blood during the C-Section. My blood pressure went up so high that most middle-aged men haven't even reached that level of hypertension.If the doctors hadnt't figured out what was wrong with me, I would have gone into full liver failure and then started having strokes. I  had (and still have) so many questions, that no one could answer with any certainty. Why did this happen? Did I do something wrong? Will it repeat?

On Sierra's third day of life, it was determined I was stable enough to be moved and could go to Sierra's room.

Accompanied by Steve and my mom, I was wheeled down a floor to the NICU. I washed my hands leaning forward in my wheelchair. When I entered NICU room #1, I had tears streaming down my face. My tiny dancer was wrapped up in blankets and wearing a hat with blinders, tubes and wires covered her body. I couldnt see her face. Her tiny body lay there like a still life portrait. The nurse told me I could put my hand in her isolette but I declined. I didnt want to disturb her. I didnt want to hurt her. I sat there in my hosipital gown,  in a wheel chair sobbing for what seemed like hours before Steve gently suggested I go back to my room and rest. I reluctantly agreed.  

I stayed on the IV medications for a couple more days before I was  moved to post partum side with the other babies and mothers. It was very difficult to pass the nursery windows and see infants healthy and strong on their way to nurse with their mothers, while I had to get buzzed in, scrubbed and gowned  in order to just  look at my daughter. I struggled with guilt and depression. I was released form the hospital a total of 12 days after I was admitted. I went home with out my daughter.

Sierra was born with a heart defect, called a PDA, common in preemies where the vessel between the sides of the heart doesnt close up at birth allowing the oxygenated and unoxygenated blood to mix. If the PDA didn't close on its own, or with medication, she would need open heart suregery by the time she reached 2 weeks old. Thankfully, the Lord had our tiny angel in His hands and the medications closed the PDA with just two rounds of medication. Sierra had jumped accross one huge hurdle for such a tiny thing.

On the 12th day of Sierra's life I was finally allowed to hold her. To accoplish this, I had to be scrubbed, gowned and sit in a chair. We had to rearrange her hospital room to accomodate all of the machines, cords, IVs and tubes needed to sustain her life. They placed my tiny little girl on my chest and my life seemed complete. I literally glowed. I was lucky to have my grandparents there to take pictures of this momentous occasion for me. Her 1 pound body felt weighless against my skin, but her warmth weighed heavily on my soul. After what seemed like a few short minutes a nurse came to put her back, into what we came to refer to as her house. The Isolette.

We brought blankets, stuffed animals, window clings. Anything to make her room more cheerful. Steve and I went to see our baby twice a day. Morning and evening. Every chance I was allowed to hold her, I accepted greedily. Soon, I was asked to start changing diapers. Preemie Extra Small diapers are smaller than most maxi pads but still seemed to drown her tiny frame. By the time she was approximately 2.5 pounds, I was asked to start giving baths. I was very nervous for that. She was tiny and slippery and I was afraid of getting soap in her eyes. After a  very messy and sloshy first bath by mom, I was allowed to hold her skin-to-skin to warm her up for 30 minutes.

Sierra suffered from bradycardia episodes, where her heart rate would slow down so much she was at risk of brain death. One such episode occured while I was holding her and when alarms started sounding, nurses rushed in screaming for help and took her from me and ordered us out into the waiting room. I called steve and waited. After a couple ofhours the Neonatologist came out and explained that she was severely anemic because her body simply wasn't big enough to produce her own red blood cells. She would need blood transfusions to keep her body circulating oxygen to keep her little heart going.

On April 13, 2009, we arrived at the NICU to discover Sierra wearing her first clothes. A huge milestone for micro-preemies is wearing clothes. Their sensory systems are so underdeveloped that any small touch can overload their senses and put them in shock. She had a yellow flowered sleep and play (size preemie) wrapped around her twice to hide how large it looked, and a tiny yellow bow in her hair. She was an angel.

Amazingly, Sierra seemed to thrive despite her rough begininngs. She continued to grow and get stronger every day. Soon she was taken off of the C-PAP and given a nasal canula. She was taken off of IV nutrition and given an NG tube. We tried to give her breast milk through the tube but she was unable to digest it. she was put on Neocate formula. Soon she was "eating" 5ml, 7ml, 10ml...

After a few more days, she was moved to a room with a window to allow her to adjust to daylight. The room was much sunnier and brighter and full of hope. Shortly, after that she was removed for the isolette entirely because she was now able to regulate her own body temperature.She was very strong and became a favorite among nurses at the NICU. At might request the nurses began re-introducing my breast milk, alternating with the special formula. Slowly we built up her tolerance to it until we tried all breast milk. She stopped gaining weight, so we settled on alternating formula with breast milk and she did wonderfully.

One day in May, I began experiencing excruciating pains and was rushed to the ER where I underwent an emergency appendectomy. It was the first day I ever missed a visit to Sierra's room. I was dismayed. I was also crushed to learn that I would need gallbladder surgery in the near future, to take care of all of the stones that had been there since before Sierra's birth. One week after my apendectomy, I went under the knife for the third time in under three months. I joked with the anesthesiologist about getting a frequent patient's discount card. After I left the surgery center, I insisted on seeing Sierra and learned she was heavy enough and strong enough to be released. However, due to my surgeries they wanted to keep her another few days and even then, they would release her only if I  had 24 hour a day assistance for the first week that she was to be home. After arranging for people to be at our house at all hours of the day and night, we took our little five pound girl home. It was Sunday, May 29,2009. Eighty days from the day she was born, sixty-eight days for them the day I was released and sent home empty-handed.

Life at home was wonderful, albeit sore and hard for me. I was recovering from not just a C-sections, but two other surgeries, in addition to learning to be a new mother. I had wonderful people around at all times to help me if I needed it. I was able to  drive Sierra to her first after going home check up, even tho she was over three months old, the appointment was on  her original due date; June 3, 2009. Somehow that seemed fitting. Weighing 5 pounds 8 ounces and 16.5 inches long, she was still smaller than most newborns.

The next two years flew by in a whirlwind of medical professionals, check ups, a minor surgery, a wedding, a move to another town and a hospitalization for pnuemonia. For the most part, Sierra has grown into a strong, beautiful two year old girl, but we still have out struggles.  She is now 24.8 pounds and 31.5 inches tall at 26 months of age. She is still just barely on the growth chart for her age group, but as I like to say, "The smaller the package, the greater the wealth."

I urge you to share this story with anyone who is  pregnant, anyone who experienced or is experiencing something similiar or anyone who just needs an uplifting success story. Feel free to copy and paste and add your own story before you pass it on. If you or any one you know is experiencing symptoms during pregnancy that are similar to those described in this essay PLEASE get immediate medical attention.

My name is Sasha Renee Lewis-Frasier, and my daughter Sierra Renee Lewis and I survived. SO can you.

Pregnant at 21 weeks

 

 

Sierra at 3 days old

 

 

 

 

Getting ready to go home from the NICU