May 7th, 2016 by Darla

My daughter was born 11/9/14 at 23 weeks 6 days, weight 1lb 1oz, 11in. Of course we knew there weren’t too high of hopes, but I still had my hope she’d make it through. Day after day she made small strides. She made it through the pda ligation surgery and was finally off the oscillator vent, no more IVs, no more picc line, and just her feeding & breathing tube remained. 01/04/15-I had changed her diaper, taken her temp, she smiled, wiggled, and full of life. She was doing so wonderful, even at 35% oxygen support and vent settings down, showing she was breathing more on her own. Then, without any symptoms, warning signs or anything at all, she developed NEC during the night. My story is as follows:

Monday, January 5, 2015
It was 5am when I awoke to that fateful phone call from the NICU. First the nurse asked if she was speaking to me, then handed over the phone to Doctor Wiener. She informed me the baby had taken a turn for the worse in the middle of the night, had necrotizing enterocolitis, bloody stools, and was rapidly deteriorating. She felt it would be best to come in immediately, given her condition. Immediately after I got off the phone, a knot was present in my stomach, which grew larger and larger as I moved.
I then told my husband and we got ourselves dressed, as my step-son ate breakfast and got ready for the first day of school back from the two week winter break. I then updated Facebook to let them know what was happening with her and called my parents to let them know what was going on. We then left for the hospital at 5:20am, hit every single red light along the thirty minute drive, and arrived there at approximately 5:45am.
I got my security badge from security, had to wait for the elevator to be released to go up to the 2nd floor, and then I made my walk from the elevators to the NICU entrance. I waited at least 1 minute (which seemed like an eternity at the time) for someone to answer the phone to let me in. I quickly scrubbed in and went over to Alazne’s bed side.
There she was, extremely swollen stomach, IV in her head and her legs, ventilator at on 100%, heart rate not even 100 bpm, and appeared to be lifeless. The night nurse, Nina (who she’s had since her birth), looked distraught, blood shot eyes, and frantic going from one thing to the next. She asked me if the doctor told me to come in and said she’d find her for me. I just talked and talked to Alazne, telling her she’d be okay and we’d get through this. Letting her know I was there and I would be right by her side.
Dr. Wiener came up and told me the news, which was pretty much the same over the phone, but with the details of: her intestines were just too big for her body, her veins weren’t working to get and IV in, her body kept shutting down, acid in her liver, surgery on standby for her intestines and bowels if the x-ray showed any air that could be drained, and she was really concerned that she wasn’t going to pull through this. Moments later my husband arrived, she informed him of what was going on as I stood by her bed side, staring at all she was going through.
He then sat down as we watched the doctor and nurses attend to her. They were trying to get blood from her heel to draw a blood gas as her oxygen was now dropping. The doctor came by and said her chest wasn’t moving at all and started performing chest compressions. That’s when my husband went downstairs to be with my step-son. Moments after that the red light was switched on and twenty people surrounded her. Doctors, nurses, and respiratory therapists were on standby. Chest compressions continued as manual air given through a bag, while syringes were being filled to give her more medicine for her heart. They moved her to the oscillator vent and turned it up high to get her breathing again. Finally, after five minutes, she was stabilized, for now.
As the nurse kept coming up to me to inform me what they were doing and why they were doing it, I just stared from the chair, helplessly, crying at what she was going through. Just yesterday she was doing so very well. She was wiggling, making faces, almost smiled again, changed her diaper, took her temperature, felt her warm skin on my hand, and she was well on her way to coming home. It’d been 1 month and 2 days since her pda ligation surgery, 11 days since she was no longer on the oscillator, and 8 days since I last got to hold her. It was then that Dr. Wiener came to talk to me again, letting me know she was stabilized and they’d keep me informed of what was going on.
I then took my keys to my husband so he could take my step-son to school. While they were going, I was super sick to my stomach, rushed to the bathroom where I quickly threw up. I sat back down for maybe another 5 to 10 minutes when the NICU called, stating they needed me up at her bedside again. I showed the security guard my badge, entered the elevator, quickly got out, and ran over to the entrance. One of the nurses who was party of the response team let me in and I went over to her room. Dr. Konana talked to me about what was going on and what they were doing, saying how sorry she was, and if I wanted to just hold her and let her pass or let them keep trying; I only sobbed hysterically. She wanted to know if my husband would be back and if I could call him. I called and called, but no answer. I said I wanted them to keep trying as I wanted my baby girl more than anything. Dr. Wiener then came over after a few minutes saying that she thinks it was futile as they aren’t getting a heartbeat back. I decided I just wanted to hold her in my arms one last time.
They gave her to me, wrapped up in the hospital blanket, she opened her eyes, looking at me, her body bruised from all they were trying to do to save her. She was then baptized by the doctor and she checked her heartbeat moments later, but she only had 7 beats a minute. They were keeping her on the oscillator just long enough to let my husband come see her and hold her if he wanted. Right then, my husband called and I said what was going on. It was now 7:59am when he arrived. 8:01am, she checked her heart and she had passed. She was no longer suffering. She had fought hard to live in her 57 days, very hard.
All the monitors and machines were turned off as I just held onto her, looking at her sweet face and gently closed her eyes. Nurse after nurse and doctor after doctor came by to tell me how sorry they were for my loss, giving me hugs. While waiting for the chaplain, they took the breathing tube and enteral tube out of her throat. For the first time since birth, I finally saw her face. She had such a cute little mouth, nose, and cheeks. We were then asked if we wanted an autopsy performed and couldn’t answer at the time. My husband left for some air and the chaplain arrived. Finally, my husband arrived and we were taken to a private room to be with our baby girl.
In the room we said a few prayers, talked, and I just held onto my baby girl. I finally called my dad back to let him know what had happened and let him know to tell my mom. I decided I wanted to have her cleaned up and pictures taken. I went back to her room, for the last time, waiting for the nurse to come back. Since we decided not to have an autopsy, all tubes were taken out of her body. She was already decomposing, as it was now 11am, bruised body, stiff limbs, and that sweet face. I cleaned her up, put her diaper on for the last time, and helped put her in the gown they used for her final pictures.
We took her Christmas bear she received from volunteers, her blankets that covered her isolette, and were going to come back for the memory box with the photos. For the last time, I walked away from her bed, knowing I wouldn’t be coming back the next morning to come visit her and tell her how much I love her.
I miss her dearly. Her brother was born at 26 weeks 5 days (now 9 Years old), another brother 22 weeks (lived for 1 hour 26 mins), and a miscarriage 3/6/12. She was supposed to be my good luck charm, the one who made it, and my only daughter. Her name means miracle and she truly was my miracle for those 57 days of life. I, of course, cannot understand how she literally changed from one minute to the next without warning. Nor can I understand that there was nothing showing up on the x-ray to perform any surgery; no air in the bowels, nothing, just enlarged intestines.
I am glad I came across this site to see I am not alone. It hurts me to read the stories of loss, but makes me hopeful that more could be done in the future.

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