Leila's Story *Long Post*

Our second daughter, Leila, was due in April of 2015. In December 2014, when I was 5 1/2 months pregnant, we took a trip to Disney World for Sophie's 2nd birthday. We were there for 2 weeks and it was fabulous. Yet, I had some issues that I didn't think anything of, but later realized were my body's way of telling me something was wrong. I caught a nasty cold the day before we got to Disney. I was coughing pretty terribly the entire time. About 5 days into the trip, I started having a lot of pressure "down there" and felt like I needed to sit down a lot...a feeling like Leila was going to pop out almost. I knew I carried pretty low, so I wasn't too concerned. I then developed a discharge that was a lot thicker and different in color than usual. I wasn't sure if this was something to be worried about, but decided not to worry because I felt completely fine. Looking back, I wish I would have called my OBGYN at home, just to ask about it. But I felt fine! I figured if something was terribly wrong, I would have pain, or blood, or something. So I just changed my pantyliner more often and carried on.

The night we got home, I remember feeling very tired. I washed the floors and did some laundry then went to bed. At around 4:45 am the next morning, I woke up with really bad pains in my pelvis. I got up to pee and almost passed out when I noticed blood in the toilet. Could these pains be contractions?? I called out to Jesse that I thought we needed to go to the hospital. He was so scared. He's my rock. My calm in the storm. And I could see on his face that he was super scared.

Jesse called my mom to come over to watch Sophie and we headed to the hospital. They hooked me up to a fetal monitor. When the nurse found out I was only 23 1/2 weeks pregnant, she didn't seem too concerned. I remember her joking with us. I remember also feeling blase about the whole thing. It was probably just some weird contractions. We'd be there a bit and go home.

They monitored the contractions for a bit and then called for a sonogram. I remembered the sonographer making a comment about having a hard time finding my cervix. She left to call the OBGYN to come in to talk to us. I still get sick to my stomach (even as I write this) recalling the look on her face as she sat down next to me. She told me as gently, yet worriedly, as she could that I had no cervix. Basically meaning I was going into pre-term labor. That they were going to give me meds to stop the labor and hope Leila stayed in me for as long as possible. I didn't truly understand what was going on. I had no idea. I still thought everything was going to be fine.

They flipped the bed so that my head was facing down and my legs were straight up, to keep the pressure off my cervix. They started some meds. It was around this time that the pain started to intensify. Around 6:30 am I started complaining to the nurse that it hurt really badly. I could see the concern on her face. She left to talk to my OBGYN. When she returned, she said they were going to move me to a room to prep for transport. The hospital I was in wasn't equipped to take care of pre-term babies under 28 weeks. They were going to transport me by ambulance to another hospital 45 minutes away. It was all so surreal. I still had no idea what was going on.

They moved me to a room where another nurse came to help. It began to sink in when I realized they moved me to a delivery room. I was still on my head at this point. The nurse told me that in order to transport I'd need a catheter in. I'd never had one before. She gently told me that it was going to hurt and that they couldn't use anesthesia to put it in. I could see the concern in her face. I didn't think it'd be that bad until she brought in two other nurses just to hold my legs to keep me from flailing. It was the worst pain I've ever felt. Maybe worse than labor.

My contractions were getting worse and I was almost delirious in pain. They told me they were going to give me some drug that would hopefully stop the contractions. The only downside was that where they injected it would feel like a hundred bee stings. I deliriously nodded my head. Ok. Whatever. Just do it.

They weren't kidding. It hurt like hell. It made me even more delirious. I was moving my arm up and down to try to get it to stop hurting. I was heating up (a side effect of the med). They had to lay ice bags on me, which did nothing. I was moaning and crying. I remember seeing Jesse next to me, rubbing my head. He looked white and so so scared. The nurses were bustling around getting me ready for the ambulance but I remember thinking there was no way I was going to make it to the other hospital. My first daughter was only a 3 hour labor, from the start of contractions, to getting to the hospital, to finish. I knew I was going into labor any minute. I begged the nurse to give me an epidural. She said she couldn't because I couldn't have an epidural during transport. I knew I wasn't going to make transport...I knew I was giving birth there any minute. So I started singing for an epidural in my delirium.

It was around this time that I felt like I had peed all over the bed. I told the nurse and she said I had a catheter so that was impossible. She looked under the covers and I saw the worried look on her face as she told the other nurse I was bleeding. Once that happened, the entire room became chaos. The nurse made a call to the doctor and to the NICU. In minutes, the room was full of doctors and nurses. Can you believe that I still had no idea what was going on? It's hard to describe. I just had no concept for the reality of the situation. Nothing to compare it to. All I knew was that I was delirious with pain and no one was giving me the epidural I so desperately wanted. But I was also going into labor.

And so at 8:44 am I gave birth to our little Leila, naturally and without any pain medication (something I don't recommend to anyone, unless you can't help it). Though they did everything they could, there was no stopping her coming; it was too late. She was 1 pound 8 ounces and 11 3/4 inches long. They whisked her into a plastic bag (to keep her warm) and carried her to the other side of the room behind a curtain. We couldn't see what was going on, but all the NICU staff was over there. I remember looking at the doctor and asking, "Is she alive?" The doctor nodded emphatically and reassured me that she was alive. I don't remember her ever making a sound.

I don't remember how long I laid there after she was born. At some point one of the NICU staff asked Jesse if he wanted to see her. I remember being scared. Scared of what she would look like. I remember Jesse hesitating as well. He went behind the curtain to see her in the incubator. I remember getting a tiny glimpse of her as well before they quickly carted her away to the NICU. My doctor finished up with the after birth and informed me that everything was good down there. A nurse cleaned me up and moved me from a delivery room to a maternity room. It was probably around 10 am at this point. A nurse came in and informed me that they were going to be moving Leila to Johns Hopkins Hospital, where they were equipped to take micro premies (babies born under 28 weeks). They'd be transporting her by a Maryland State Police helicopter at around 2 pm. We later learned that she was the first baby to fly in the state's new helicopter. The nurse asked me if I wanted to see her before they transported her, to which I tearfully answered, "Yes, please." They took me in a wheelchair to the NICU and I got to meet Leila for the first time outside my belly.

I was overwhelmed by being able to see her and also by all the tubes going in and out of her. She was so tiny and her skin was so thin and red. I felt so sorry for her and I wanted to just wrap her in my arms, as if my body could save her and heal her. I was only allowed to touch her with my finger.

Later that afternoon she was flown to Johns Hopkins Bay View Campus. We were told that this was a good sign because if she was critical she'd be at the Main Campus. The bad thing was that Johns Hopkins was an hour away, so it wasn't an easy or quick trip to visit. We felt hopeful, though we still were not comprehending the situation or what was going on. It was like a dream; a haze. The doctor asked me if I wanted to be released that same day so that I could go visit Leila. I said yes and at 5 pm I was discharged. I was sore and swollen but I remember just wanting to get home and hold Sophie. I remember feeling like I needed to touch her. The only good thing about this all was that Sophie was too young at 2 to understand what was going on. Thank God we didn't have to explain this all to her.

Leila was born on December 12, 2014 and the next 5 days were the worst days of my life. On December 13, I visited Leila for the first time. Our family also got to meet her. On December 14, I stayed home because I was still sick with that nasty cold and afraid I would pass it to her. Jesse was constantly at the hospital every day. He told me that the nurses asked if I'd be breastfeeding. I had no idea this was an option with Leila, so Jesse obtained a hospital pump and I began pumping that day. The problem was that no one had informed me to start after she was born (not to mention that was a pretty chaotic day), so my milk supply was almost non-existent. The lactation nurse said the low supply could have been due to the stress/trauma I was under plus the fact that she was born early. Either way, I was dedicated to my pump and providing her with my milk so I would pump every two hours. I remember sitting there, just getting drops, while Sophie would whine for me to play with her, oblivious to what was going on. Tears would just stream down my face. My face was constantly puffy and red from crying.

On December 15, we visited and sat in on a meeting of the NICU nurses. It was a sobering experience. They discussed Leila's condition and told us that she had had an episode that was similar to a stroke in an adult which left some brain tissue dead. I broke down in front of all those nurses and doctors. It was a hard blow. They were hopeful that, though a setback, she could be completely fine. Only time would tell.

On December 16 I stayed home, again worried about passing my cold germs to her after she had the stroke episode. Jesse was with her during the day while I watched Sophie at home. I can't even explain the guilt and stress I felt choosing one child over the other. The feeling of wanting to be in two places at once was intense. That night we got a call at midnight from Johns Hopkins that Leila needed emergency surgery. She had developed a perforation in her bowel and they'd need to do surgery to fix it. We had to give oral consent on the phone and Jesse rushed to the hospital. Jesse got home around 10 in the morning, having slept in her room with her overnight. He said they fixed the bowel but she was losing a lot of blood and they had to give her a lot of blood transfusions. She was stable but was now at the main campus due to her surgery. Jesse looked tired, sad, and scared. Around lunch time we got a call from the hospital, asking us to come in to discuss Leila's condition. Jesse was immediately worried but I was hopeful.

When I saw her new room at the main campus, I was impressed. It was a beautiful hospital and the room was huge. It was enclosed by a glass door and window, so that you could see in all the NICU rooms, yet they were contained from the hallway. I immediately thought this was going to be a nice change from the Bay View campus, where all the babies were in one room. It would be nice to have her own room and be able to spend the night with her. I smiled at her nurse and asked about how she was doing. Her nurse was a nice, young girl who was so bubbly, it hurt. She updated me that Leila was losing a lot of blood but was super nice the whole time, acting like it was no big deal. I remember smiling at Jesse and thinking, "See? It's going to be fine." Our nurse was joined by a couple other doctors and hospital staff and they asked us if we wouldn't mind following them to a conference room to discuss Leila.

They took us down these nice, white, gleaming, fresh halls to an equally nice, white, gleaming, and fresh conference room. We sat at a huge table, Jesse and I on one side and our nurse and another lady on the other side. The other lady was some sort of hospital social worker/therapist. It's sad but I can't even remember her name or title. I remember her asking about where we lived and saying she grew up and went to high school at one of the schools near us. I remember smiling and politely feigning interest. Then in came some lady who was a doctor or the head of something at the hospital. I honestly can't remember their names, titles, or any of those details. I just remember that this woman must have been important and was the head of something important. I immediately disliked her. She never smiled or felt any compassion towards us. She was cold and void of feeling. She matter-of-factly told us that Leila was losing a lot more blood than they were giving her. That they would have to do another surgery at some point to completely fix the bowel but she'd have to be older since her body couldn't handle too much morphine at once. That she was in a lot of pain but the amount of morphine they could give her, as well as the length of time they could give it, was a problem. That even if she did recover from this perforation and the earlier stroke, she would most likely be a vegetable or have severe mental and physical handicaps. She then informed us in a sterile voice that we had to decide if we wanted to continue keeping her alive or take her off life support. As soon as she said this, I lost it. A pain inside of me that I've never felt before, erupted. It was like my entire soul died; like someone was sucking everything out of me and there was nothing there. Any mother who has lost a child or grappled with something like this could tell you what this feeling is. The feeling that a part of you is dying, or dead. I remember screaming. A loud, painful, moaning scream, more like a wail. It was at this moment that all the nurses and people left the room to "give us a moment." Of course, the cold, important lady told us they'd be "right outside once we made our decision." I've never wanted to hurt someone so badly in my life.

As we sat there, Jesse and I, losing it and holding each other, we had the most difficult talk of our lives. How can I even put in words what it's like to have to discuss ending your baby's life? In the end, we both agreed on one thing; we didn't want her to be in pain. It was selfish of us to continue her suffering when her body was telling us it was time to let go. We didn't want to see her in pain anymore. Medical advances and science are amazing and save millions of lives. I'm a huge supporter of medicine and science. But in some cases, we just can't save everyone or everything. Especially when it becomes more of a selfish choice rather than considering the person we're saving. This is not a condemnation of anyone's choice when it comes to these things, or a call to action. Rather, just my personal feelings on the matter. Regardless, after this experience I've learned that anyone who has to make these choices deserves respect and no judgement. Because you never want to find yourself having to make the same choice.

I don't remember telling the nurses what we chose. All I remember is at some point coming out of the room to see them all huddled about 20 feet down the hallway whispering. One of them came to me and I must have muttered our decision. I really don't know. I do know cold lady was no where to be seen.

They led us back to Leila's room where they put two chairs together for us. They put her in my arms and turned off her life support.

This was the first and last time I ever held her.

I had no idea how this was going to go. I guess I thought it would be quick. Leila was always a fighter though, I knew that. Her heart was always so strong. She stayed alive for two hours. Two hours we sat with her. In my arms, then to Jesse's, and back to me...over and over for two hours while we both sobbed uncontrollably. I hope no one reading this will ever learn what it feels like to know your child is going to die, right there in your arms, at any moment. Oh, it was so painful. And painful isn't even a good word for it. There is no word for it.

Nurses asked us if we wanted to use the hospital's photographer, free of charge, to take pictures. I remember thinking how morbid this was. Why the hell would I want pictures of my dying/dead child? What is wrong with you? Thank God that nurse decided to get a digital camera anyways and snap a few shots of us holding her, because those 4 pictures are all I have now. They asked us if we wanted to baptize her. I also was angry and almost said no. She's an innocent, pure baby. Why would we need to baptize her? Of course she's going to heaven! Thank God Jesse told them to do it.

The worst part was waiting for her to die. A doctor came in every 20 minutes to check her heartbeat. It was terrible. Finally after 2 hours, I had this feeling. I remember I was holding her and I looked at Jesse and said, "I think she's dead." About 5 minutes later the doctor came in and sure enough, she was dead. I felt so exhausted. I felt like I didn't have any more tears left inside me. I also felt like I had nothing inside me anymore. I just wanted to go home. Go home to my baby who was alive and hold her. I just wanted Sophie. They laid Leila in the incubator while we signed a million papers. They put her birth card, ankle tag, the pictures, a clean premie diaper, and other remnants in a bag for us. They asked us if we wanted to take anything out of her incubator. I was so cold and numb and said no. Thank God the nurse put her swaddling blanket in our bag. It has a small dot of blood on it from her. I still sleep with it under my pillow every night and will never wash the blood from it.

They gave us a beautiful memory box filled with the above remnants and with a bit of her hair and her foot print. I remember thinking it was so morbid they were taking her footprint, dead. It was all just so much. Thank God they did it anyways and we have it now.

After the last papers were signed, the new nurse tearfully gave us hugs and said she was so sorry. I remember really liking her. Her and the man who checked Leila's heartbeat every 20 minutes, were the only ones who seemed sad about the whole thing. She gave us the bag and memory box, and just like that, we were done. We walked down those bight, clean, crisp halls in a daze. I didn't even feel like I was alive. We somehow made it to the car and drove an hour home. We had called my parents to have them put Sophie to bed at our house, not theirs. We needed her home. When we got home we quickly told them Leila was dead. A week before Christmas.

So maybe you can imagine how I needed to find joy after this and why this triggered years of anxiety for me. Either way, though I thought there'd be no way to come back to life after this, that "dead" feeling inside me eventually came back to life. The pain is never gone. It's always there. It just lessens with time. But there's always an ache when I think of her. A feeling like I can't breath and there's butterflies in my stomach. That's what it's like when I think of her. But I hope that never ends. Because it's a reminder of her; my only way to feel her.

#BirthStory #LeilaDaisy #PreTermBirth #23WeeksBorn #InfantLoss #InfantDeath #JohnsHopkins #NICU #MarchofDimes #PreTermLabor