Mom to Evelyn May

Born April 29, 2012 and died June 6, 2012

Las Vegas, Nevada

I am writing this exactly 3 weeks after my precious little girl passed away in my arms.

It all started December 21st, 2011, when we found out we were expecting. I went to the store off of a hunch that I was pregnant (despite being on the birth control pill for over 2 years) and bought 2 pregnancy tests. I knew deep down that one positive test would not convince me. As soon as I got home, I took the one, positive, and then the other, also positive. I was shocked! To unexpectedly have a baby is a scary and exciting feeling wrapped into one anxious, live-changing moment. I called my boyfriend into the bathroom and fell to my knees crying. The fear that he would be upset was in my heart, but to my surprise, he picked me up and held me. I said to him, “What are we going to do…?” He replied with a smile, “We’re going to have a baby, that’s what we’re going to do.” I went telling my whole family about the change in our lives. I even took a third pregnancy test that night to be EXTRA sure.

We went 4 days later to a clinic to get their test to confirm I was pregnant. I even got an ultrasound that day without an appointment. I was 5 weeks and 6 days, and was given my first pictures of my little angel, no bigger than a sesame seed on the photograph.

Every week I took pictures of my growing belly. I took it easy, but I did not stop being active. I quit my physically demanding job, I arranged prenatal appointments, I sang to my belly and dreamed of a future with my first child, a family. I would play Led Zeppelin every day and she would react; I wanted to see if she would recognize the music when she was born. I sang her “Out on the Tiles” every day for 5 months. I found out we were having a girl at 18 weeks. My mother and I signed up for a baby registry at around 20 weeks.

At exactly 24 weeks on the day, I woke up feeling different. I felt different for a few days but chalked the odd pains up to normal growing pains. There was more discharge than before for a few days, which I thought was to be expected also, since I was told that increases over time. I got out of bed on April 29th and as I stood up, fluid poured down my legs. I thought I had urinary incontinence; it had to be something simple in my mind. Walking around the house felt more uncomfortable than the previous days. I lay on the couch for a while, until I had to pee again, and as I went to the bathroom I felt a gush of something very different. I had lost my mucus plug, and saw a tinge of blood. Immediately I told my dad to rush me to the hospital.

I went in, filled out papers, and was seen within minutes at about 4:00pm. They had me on the bed and went to look at me. The nurse saw something wrong. Her face was pale and she looked up at me with very sad eyes. My membranes were exposed, and I was 4 centimeters dilated. As she moved away from me I felt my water completely break, and she just said to me, “I am so sorry, I’m going to take care of you and get another nurse!” Nurses and doctors flew into the room, and I was asked what felt like a million questions. My father came in, and I called my boyfriend from work to tell him to rush to the hospital. I then called my mother, my boyfriend arrived and he called his family, everyone was rushing to the hospital. All the while I was being hooked up to monitors and machines monitoring contractions that I could barely even feel. I heard my baby girl kicking and her heart beating, she was so active and strong. Delivery was impending.

They rushed an ambulance to take me to a hospital nearby that has a level 3 NICU. She was monitored the entire trip, where I was admitted for a cesarean. I was lying on the table with my boyfriend at my side, watching the whole thing with tear-filled eyes. It all was happening to fast and all I could do was steady my breath and stay positive. I was going to see my little girl 16 weeks too soon. Within 20 minutes, she was out, too small to cry and immediately put on a respirator. Evelyn May was born at 8:17pm at 1 pound 5 ounces and 12.75″ long. I asked my boyfriend, “What does she look like??” All he could say was, “She’s beautiful.”

They rolled her bed near me and I could barely see her little body in the blankets, and just like that she was whisked away and I sent her father along with her. Finally I began to cry, it all hit me, I was so scared and so happy at the same time. I stayed awake for 7 hours after she was born until I could feel my legs after the spinal wore off so I could see her. Absolutely beautiful. Every little move she made fluttered my heart, nothing in the world mattered when I saw her. She was healthy. I stayed in the hospital for 5 days so I could see her when I brought down my milk for her. She had no brain bleeds following her birth, she was started on 1 milliliter of milk just 2 days after being born, she had a small hole in her heart (called a PDA) briefly but it closed up on her own, her lungs had small air leaks but that cleared on its own as well.

I was pumping breast milk every 3 hours and saving it for her, walking it down the hallway of the NICU while I was in the hospital and storing it at home in the freezer after I was discharged. Every day I saw her early in the morning with my mother, and at night with my boyfriend after he got off of work…some days with other visitors. We held her hands and caressed her back, we talked to her, we tickled her feet, we took her temperature and changed her diapers. Just a little over a week after she was born she opened her eyes for the first time with me and my boyfriend present. After all she was trying SO hard for 2 straight days to pop those little buggers open. Mother’s Day came on her two week birthday, and I had a beautiful moment with her opening both eyes at the same time for me while holding my hand. It was breath-taking. She loved to stick her little pink tongue out at us.

I spent hours a day with her never missing a night for goodnight wishes. She had one scare when her ventilator tube clogged and she needed to be given manual breaths, the morning I saw her you could tell she was shaken by the experience earlier in the night. But, she pushed on. At 3 and a half weeks Evelyn got herself off the ventilator to go onto CPAP but later that day had to be switched back, although she gave it a good try. Her 4 week birthday came, and her father read her books for the first time.

She responded to us every single time we were there from day one, her oxygen saturation would jump up when she heard me talk, and go down when she wanted me to hold her hand or touch her. She had a personality that was so strong it affected every single person in our family and group of friends, even those who never saw her. On June 4th, I held her the longest I ever had. I reached into her incubator with both hands, one on her legs holding them close to her, and one gently on her head. She LOVED it. Her little hands touched mine, holding my thumbs and snoozing like a little princess. Her oxygen saturation was fantastic, and as soon as I tried to leave the incubator it dropped from 98 to 70. She didn’t want me to let go, so I was stuck there (happily) for almost 2 hours.

On June 5th, we had an eventful family visiting day. Her father’s family got to see her one at a time, and later that evening his two friends visiting from out of town as well. I saw her at 8:30pm and she looked great. Filling out, soft and wild strawberry blonde hair growing so fast, eyes wide open and alert, she held my fingers and looked up at me while I chatted with a friend. I got to see her so much that day. Evelyn was doing so well, at that moment eating half an ounce of milk and 2 pounds 2 ounces, 13″ long. Things were starting to get better and better every day, we were so close to finally being able to hold her.

Then, at 4:00am on June 6th, we got a phone call. Her doctor. He explained that at 3:30am her belly became very distended and hard, and she turned very grey in color. Things were not looking good for her. I rushed down to the hospital, but her father had to go into work at 5:00am. I told him to drop me off and I’d let him know how she starts to get better. When I saw her she was very veiny and grey, barely moving at all. They stopped her feedings and nurses were surrounding her giving her antibiotics and medicines and trying everything they could to get this under control. My heart was breaking into pieces… I held her hand, sitting next to her, and talking. All I could say was how much I loved her and she needs to pull through this. I sang to her “Out on the Tiles” for the first and only time, and she kicked her legs briefly and squeezed my finger with what little energy she had left…

The doctor came and said they were going to do surgery on her, but things were looking really bad really fast. She had developed Necrotizing Entercolitis, NEC. A condition where the intestines become infected and perforated, leaking air and bacteria into the intestinal wall, and eventually kills off the intestines. The next time I saw her before the surgery she was extremely ill, more so than just two hours before when I arrived. I’ll never forget how she looked that day. Her father arrived quickly after I called him and my family. I went and saw her one last time, there was a little blood on the sheet next to her mouth, I knew it wasn’t going to be okay… We both told her we loved her before speaking with the surgeon. The surgeon told us while we were near her bed that if they go in and she was too far gone, they will just sew her up, there will be nothing they can do.

And that’s exactly what they did.

At 9:30am my family and I were walked into a room and were told that there will be no saving our little girl. We were crushed. I doubled over and felt like my life had been ripped right out of me. They walked us down to see her, and she was dressed up in a little pink gown with a bonnet and booties. I almost fell when I saw her, her machines and monitors being turned off and all that was left was her respirator. My whole world shrank down just big enough to fit her into it. I held her as she fought to breathe, some blood came into her mouth and I just could not handle hearing and seeing her suffer a minute longer. I had them take her vent out, the one thing she just hated during her stay in the NICU, it was finally out. They took us all back to another room to be alone with her. We rocked her in our arms apologizing for not being able to do more for her. My cheeks were burning with tears but there was a smile on my face. I finally got to hold her close to me, and rock her. She looked up at me and never moved her eyes away, her heart was still beating an hour later, she was still with us. That’s when the doctor came in and gave her another shot for the pain. I looked into her perfect little face and she smiled, just barely, and let go… She passed away on June 6th at 10:51am with a smile on her face.

On June 14th she was buried in a beautiful cemetery in the Garden of Innocence with all the other loved babies who could not be here with their parents right now. She was laid to rest with her father’s childhood stuffed dog, a tiny giraffe (an animal I always associated with her) and a picture of her mommy and daddy. Many people showed up to express their love for this tiny, 2 pound little girl who never even made a sound to lay roses on her casket. On Father’s Day, my boyfriend and I visited her alone for the first time. It was a very rough day for us…

It all happened so fast, and so painfully for us all. We got to have our little girl for 38 days, 38 days longer than anyone expected of her. She was strong, a fighter, and a winner, until something much bigger than her came her way and she just could not fight this battle. It’s been 3 weeks since I held her for the first and final time, and every day is excruciatingly hard. My life was changing so quickly to fit her into it. We’re moving, I just learned how to drive so I could take her places, her father got a much better job for her…everyone changed the minute we laid eyes on her.

But throughout this whole ordeal we’re holding together. That’s not to say that I’m not breaking down every night wishing she was here, or wishing that I could just drive down the street and she’d still be sleeping happily in her NICU bed. She’s not there anymore. Our lives have to move on with her continuing to be our motivation. I’ve made 2 wind chimes to hang in her memory, one at home and one on a tree near her resting place. I may even start making them for other parents who have lost their angels too soon. I’m also about to donate over 600 ounces of breast milk that I was saving for her to San Diego Milk Bank for premature babies just like her…

Every day is a test on our emotions. We’re missing her deeply, yet cherishing the time we had. This loss is like no other I’ve ever felt in life, but we still must go on, for us, and especially for her. Evelyn May S. is with us every day and I know she is proud of her mommy and daddy, and I know without a doubt she felt our love for her. I never thought in my life that she would come and go so quickly, but in a way, I’m glad she did. I would have never known the love I can hold and the places I can take myself if it weren’t for her touching our lives. There is nothing in this world that can take away the fact that I am a MOMMY, and most importantly, I am HER mommy.

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  1. Katariina says:

    I accidentally typed two things wrong when I sent this in: She was 11.75″ long at birth, and 13.5″ long the week she passed away. Love you baby girl <3.

  2. Katariina says:

    I might be commenting on this twice, but accidentally typed a few errors in my story that are bothering me and I want to correct them… She was born at 11.75″ long and was 13.5″ long in her last week, and she started out on 0.5 milliliters of milk (not a whole ml).

  3. I just wanted to say how sorry I am. My son died in the NICU at 17 days a year ago, after he was born at 26 weeks. My waters broke at 22 weeks. It broke my heart into a million different pieces. It was impossibly hard, but it’s got easier over time, I know he’s with me. I feel him in my heart, And I know that will never change.

  4. My son Gavin was born at 23 weeks, 6 days due to an incompetent cervix and weighed 1lb 7.34 oz & was 12.6 inches long. My sweet boy was with us for 60 1/2 hours before passing gently into our arms. It’s an experience unlike any other. Despite the medical circumstances, it’s impossible not to feel anything but love and hope. The morning of the day Gavin died, he was doing the best he’d ever been doing. So many of his medicines had been stopped, he was doing a vast majority of the breathing on his own and so I went home to get some rest for a little bit. And before I knew it, I got a call from his nurse telling me I needed to get to the hospital immediately. In what felt like minutes, not hours, my son rapidly declined and before I knew I was holding my son for the first and last time. He passed away in my arms at 8:05pm on August 18, 2011.

    It’s been a little over 10 months now and believe me, I still have plenty of days of feeling angry, feeling lost and feeling overwhelmed. But like Vicky said, I know my son is with me in all that I do and to me, that’s the most important thing to remember. I will always be Gavin’s mommy & you will be Evelyn May’s mommy!

    It is my sincerest hope that you are surrounded by nothing but love and supporting people. Forget the people who aren’t (even if they are relatives). Grieving is hard enough without feeling judged. May your memories always be a blessing. xoxo!

    • Katariina says:

      Thank you guys so much. I’m so sorry that both of you lost beautiful sons in such a difficult way :(.

      Vicky, your son loved you and will always be with you. You’re very strong to be holding up the way you are after just a year. I hope in that amount of time I can look back on this excruciating experience in a different light, without such a heavy heart.

      Ashley, my prenatal doctor thinks I may have an incompetent cervix as well but is not sure. It blows my mind how your son and my daughter (and many other babies) can be doing so well and then overnight be in serious condition :(. I am surrounded by a ton of supportive people thankfully, since there were so many who loved May May and were there with me and her throughout the whole NICU stay. Thank you xoxo!

  5. Thank you for sharing your story. It is similar to mine. My son Weston was born at 24 weeks 1 day, 1 lb 6 oz, and lived for three weeks. He died on July 28, 2012. I had CAOS: chronic abruption with oligohydramniosis (low amniotic fluid). My placenta completely abrupted, requiring immediate delivery. Weston did very well for two weeks and had a hard time his third week, but no one, neonatologists included, ever thought he would die. He was having lung problems. We got a call that he wasn’t doing well, but it wasn’t urgent. We walked into the NICU an hour later to find that he had coded and the staff attempting resuscitation, which wasn’t working. He died shortly thereafter in my arms, but he never opened his eyes.

    I think of him every minute. It has only been 7 weeks. I have a three-year-old daughter, and she is the only reason I get out of bed. Grieving your child is the most isolating experience; other stories, like yours, helps with the isolation. Thanks again for your story. You will always be known as Evelyn’s mommy in these circles.

  6. Thank you so much. I am so sorry for your loss too, Shauna <3. It's so hard to know that we are all connected by something so devastating, but thankfully we all have each other to help us stay strong.

  7. Katariina,

    I posted my email address. If you are willing, please email me. I have the same story you do, 24 week preterm birth, NEC, neonatal loss, and my son lived 38 days exactly as well! I would love to connect with you.

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