Sunday, July 18, 2010

Mommy to Leila, born at 23 weeks, 5 days
March 22nd, 2010-April 9th, 2010
Portland, OR

November 13, 2009 I found out that I was pregnant. I remember that day because it was Friday the 13th. What a scary day that was. I was 19 years old and had no intentions of getting pregnant, but it happened. I knew this was going to be a bad thing to everyone else, but me? I was ecstatic. All I did was touch my belly and picture the months to come when my belly would be protruding with baby. I looked in the mirror and smiled. I smiled at the thought of growing a little person in my belly. I knew I would be a good mother. Although not ideal at this point in time, I was ready for what motherhood would bring.

My pregnancy progressed pretty quickly. After the first trimester, time flew by. I went to my appointments every 4 weeks and all of them were normal. My baby was right on schedule with the expected due date of July 13, 2010. I was having a summer baby and couldn’t wait. At 16 weeks I felt my baby kick for the very first time. I remember it like it was yesterday. I felt like someone was poking me really quickly from the inside. I was smiling from ear to ear. I absolutely loved when I felt the baby kick.

At 19 weeks we were scheduled for a gender ultrasound so I anxiously counted down the days until our appointment. I couldn’t wait to find out the sex of the baby so I could stop calling it an “It”. The day of the ultrasound my whole family showed up. We all crammed into the room as the ultrasound tech went on with the appointment. She asked if we wanted to know the gender and we all said, “Yes! That’s why we’re here.” She found the legs and looked between them to find the parts of a baby girl! We were having a girl and I KNEW it. I knew I was meant to have a daughter. I had dreams about this…
My pregnancy moved forward with no worries or complaints. Leila was kicking harder than ever and I loved every minute of it. Many people complained about pregnancy but I thought all of it was beautiful. I loved everything about it. I never got morning sickness, so maybe that’s why I had no complaints. I loved the aching back and all. I even loved having to sleep on my side. I just felt like I had a purpose in life. Watching what I ate and making sure physical activity wasn’t too strenuous made me feel like I was doing my motherly duty of protecting my daughter. But soon I wouldn’t be able to protect her from everything.

On the 19th of March I decided to stay the weekend with my parents. The weekend was pretty uneventful although I had been feeling Leila’s kicks EXTREMELY low lately. I didn’t think too much of it as I thought it was just her moving around and kicking parts of my body she hadn’t kicked before. The morning of March 21st I asked my Mom what Braxton-hicks contractions felt like. I asked this because I had felt some tightening in my stomach for a while that was pretty uncomfortable, when it did happen. She said, “yea, you’re probably having Braxton-hicks…they’re just practice contractions.” We shrugged our shoulders and again thought nothing of it. I went to the bathroom thinking it would be the same as always, except this time I noticed a tiny bit of blood in my discharge. I thought I’d wait it out and see what happened the next time I checked. The next time there was more blood so I immediately went upstairs to ask my mom what was going on. She was done with kid #4 so I thought whom better to ask then her. She’s been through pregnancy 4 times. She said “Oh yea, that’s normal. I used to have a tiny bit of blood in my discharge while I was pregnant too.” I asked her if she was sure I was OK. She said, “Yea don’t worry about it.”

Throughout the pregnancy I had asked her about different things that was happening. I think she thought this was me being a first-timer who complains about everything. For some reason I knew this was different. Something inside me told me to be worried. I decided to wait it out and see if there was more blood later on. The next time there was nothing. That didn’t stop me from doing some research though. I was texting my best friend asking for some advice. He did some research for me as well and sent me all kinds of information about pre-eclampsia and pre-term labor. I was terrified. I thought, this is me. I went into the bathroom, looked at myself in the mirror and cried. I was thinking please don’t let there be anything wrong with my baby. I touched my belly and prayed to God that he would make her stay in much longer. I even went so far as to post something on BBC to ask the other ladies what they thought. They told me to the CALL THE DOCTOR NOW! I was SO worried at this point but I didn’t want my mom to tell me I was that annoying pregnant lady that complains about everything. I should have called anyways though. A couple hours later my mom and I sat on the couch talking about what I had told her earlier. She said “Wow, wouldn’t that be crazy if you were in pre-term labor while I’m over here telling you not to worry about it? That wouldn’t be good.” I said, “Yea, that definitely wouldn’t be good.” We kind of laughed it off but inside I was worried. At this point my stomach was tightening more and more often. They felt like period cramps to me but I timed them anyways. Something told me to time them just to be sure. They were about 4-5 minutes apart. It seemed to be getting worse. In the meantime my parents had some errands to run. We arrived at the Rose Garden and got out to walk around and get some pictures. My cramping was getting worse so I was cautiously walking back to the car to sit down. My whole family got back in the car and for some reason I looked down at my pants…there was blood. I started crying and told my mom. She looked at me and said “Kalia, don’t worry honey stop crying. Call the doctor RIGHT now, but don’t stress yourself out too much. Everything will be fine honey.” Everything wasn’t fine and I could tell by the look on her face that she was worried too. I called the doctor and she began to ask me a few questions.

“How much are you bleeding?”

How am I supposed to answer this question?...a teaspoon full? A cup full…I don’t know it’s on my pants I can’t tell how much it is! A LOT?...

Did your water break?


How old are you? When are you due? Where were you supposed to deliver? Who’s your doctor?


We arrived at the ER and I told the lady at the front desk what was going on. They got us to a room immediately. They hooked me up to a machine to check for contractions. Yup, I was definitely having contractions and they were really close together. How could I have been having real contractions and not exactly know it? Up until that day I thought it was just round ligament pain or Braxton-hicks contractions. I had been feeling these for days now. No one told me what contractions felt like, how was I to know? I mean it did cross my mind earlier that day that they could be real but I don’t know why I didn’t trust myself.

Guilt consumed me. I should have known something wasn’t right a few days ago. What kind of mother was I? The doctor came in to check me. I was already 7cm dilated. She could feel Leila’s feet in the birth canal already. She was ready to come out. OH.MY.*******.GOD. How could this have happened? What is going to happen to the baby? Can you stop it? Will she live?

All these questions are running through my head now and I’m afraid to hear the answers to them. I was only 23 weeks 5 days pregnant. I wasn’t supposed to have my daughter for another 16 weeks. 24 weeks is when the baby was viable and I wasn’t quite there yet. On March 21, 2010 the doctor told me, “You are going to have this baby within the next 24 hours. I’m sorry. There’s nothing we can do. It’s too late to stop labor. I don’t understand why this happened so fast. Usually labor takes longer to progress this quickly.”

I understood very well. I had been in labor for a few days now and hadn’t even realized it.

No one tells you the possibility of your baby dying. You are a first time mother in ignorant bliss. I loved it. You never think anything will happen to you or your baby. You are going to deliver a perfectly healthy baby and you know it. Well this wasn’t the case and I wasn’t ready for what was to come.

The doctor was going to see if my baby was even still alive before we talked about a plan. They asked if I wanted an ultrasound. I was scared of what I would see on it but of course I wanted to know my baby was all right. The blackness came up on the screen and then I saw my baby. She was perfectly fine. I had still been feeling tons of movement but seeing her just made me feel more at ease. She was breech but she was still alive. My water bags were still intact but they were bulging.

They had positioned me in a way that my daughter wouldn’t go further down the birth canal. Contractions were getting worse so they offered me an epidural. I took it and the pain subsided. I think the pain of the epidural going in was worse than my contractions.

That night I saw SO many different nurses I couldn’t even tell you their names if I tried. The doctor came back in to tell me my options. She threw out all of the statistics she knew about these types of situations. A baby born before 24 weeks had a 0-17% chance to live. She gave me page after page of research done on pre-mature labor this early on in pregnancy. There were some hospitals that have had babies that lived after being delivered that young, but this one had never delivered a baby that early that had lived. Well damn, did I come to the right hospital or not? I don’t know…

The doctor proceeded to give me my options. There were two of them.

I can choose “comfort care” which basically meant I could “comfort” Leila while she passed away in my arms. They said she might try and take some breaths but eventually she will pass away. Now how can I possibly do that? How am I supposed to watch her try and live but then not help her to continue? Well they told me they couldn’t guarantee that even if we tried to help her she would live. I asked them if we tried to save her would it be painful for her? They said they couldn’t really determine whether a baby’s in pain since they can’t speak. They do check for face signals and things like that but they can’t be 100% sure. They said that if they were to try and save her, she would be in the NICU for a very long time and she would be poked and prodded everyday. My other choice was (obviously) to try and save her. They would schedule an emergency c-section within minutes to get my little girl out and straight to the NICU. I just couldn’t imagine putting her through all that stress and pain, so I decided to go with comfort care. They told me I was making the best possible decision and they would support me in doing that. They told me I should get some rest since I wouldn’t be ready to push just yet. I was still around 7cm. How could I rest at a time like this? In a matter of hours I would be giving birth to my daughter who I hadn’t expected until July. I wasn’t ready for the birthing process already, but then I also had to “let her go”. How can anyone sleep with that on their conscious? Not me, that’s for sure. My boyfriend and mom spent the night with me and slept while I stayed awake that whole night. I was up texting friends and family asking them what I should do. I had no idea what the right decision was. I did make a decision but I was starting to have doubts. Leila was my daughter and I just couldn’t let her go. I hope I won’t be thought of as selfish, but really what do they know? The doctors can’t even tell me if she’ll be in pain or not. The next morning came and I asked my mom what she thought I should do. She told me that she couldn’t make that decision for me. I was getting irritated that no one would tell me what to do, but then again I am grateful for it now because if I had followed other people’s decisions I might have had regret later on. My mom did tell me however, that if she were in that position she would probably do anything she could to save her. (This is from a mother’s perspective) I knew she was right and that was exactly how I felt. I asked that the Neonatologist come see me again to go over risks. She told me the same things again but I guess I just wanted to talk to her and know that I had no second thoughts about it after hearing the risks again. I told her I made my decision and I wanted to go with the emergency c-section. They said that they don’t recommend it at all but they would stand by my decision and do everything in their power to save Leila. They said it would only take them five minutes to get their equipment and team ready to operate and that I should make another decision to choose who was going to be in the room with me…my mom or my boyfriend? I chose my mom. She has been with me through thick and thin and I know for a fact that I can always count on her.

Five minutes went by and I was now being whisked away on the stretcher to the operating room. I had gotten no sleep that night and was exhausted. They drugged me up so good I barely remember being cut open. I do remember them talking about how flat my belly would be after this. I was irritated. I didn’t want my belly to be flat. I just wanted to keep Leila in there and for her to grow more before she was born. On March 22, 2010 at 10:31am Leila Keolalani Mohamed was born. I remember that moment like it was yesterday. She whimpered like a little puppy and it was cutest thing I ever heard. She couldn’t cry because her lungs were not developed enough. They took her to the NICU right away and I wouldn’t be able to see her for a few hours. My mom said she was SO tiny. I couldn’t even imagine. Who did she look like? How tiny was she? I laid in the recovery room for hours while my mom stayed with me. My boyfriend had been out in the waiting room waiting for me the whole time. She went out to tell him Leila was born. I had a little time to think to myself that I had made the best decision possible, no matter what the doctors told me. I was SO grateful that she was still alive and I wanted to do everything in my power to save her. Finally a couple hours later they told me I would be able to see her.

They wheeled me over to the NICU and at this point I still had so many drugs in me. I saw her for the very first time and she was beautiful. She had so much hair and she looked just like her daddy. As a matter of fact, I didn’t see anything on her that looked like me, but she was perfect in every way. Her hands were so tiny. The nurse told me I could touch her as long as I didn’t rub her because she didn’t want me to stress her out. I touched her hand and held it for as long as I could. It was so tiny next to mine but I guess I hadn’t realized just how tiny it was at this point. I took a picture of our hands together. I prayed to God thanking him for everything. I was so blessed for her being here.

They took me to my room to recover. All I wanted to do was stay in the NICU with Leila. I was finally able to go back a few hours later to see her and the next time I saw her things were completely different. I remember looking at her and crying so hard. I cried because I didn’t realize the first time how tiny she was. She was born at 1 pounds 7 ounces and I didn’t even realize it until this time. She looked so fragile and that made me so sad to see. I wondered if she was in any pain. I couldn’t bear to know that she was in pain. I didn’t want to think I had made the wrong decision.

I went back to my room and asked everyone to pray for her. I had been getting so many calls and texts I was just too tired to respond to everyone so my mom started doing the daily updates.

My milk had finally come in and I was starting to pump. They told me eventually Leila would be given my breast milk but since she was so small they would only give her a tiny bit at a time. I was producing so much milk that the nurses were amazed and called me the “milk maid.” I was taking my milk down to the NICU so many times during the day and night. They told me I could see Leila as much as I wanted, so I took advantage of that and spent a lot of time there. It was like our new home. I knew we would be there at least until July and I was ok with that as long as Leila was going to come home safe and healthy.

On March 26th I was discharged from the hospital. I had no means of transportation and my apartment was too far to be coming back and forth every day, although don’t get me wrong I would have traveled hours every day if I had to. My mom’s house was closer so she no doubt wanted me to stay with her until Leila could be taken home. The doctor called me every morning to update me on Leila’s condition. One morning I didn’t get the news I wanted to hear.

They told me they would be doing an ultrasound on her brain the next week so they could see if there was any brain bleeding. They told me it was very common in premature babies and it was highly possible there would be and they wouldn’t be able to do anything about it. So the doctor called me that morning to tell me that they had done the ultrasound on her brain and got the results back. I asked him how it looked and he asked me if I would be coming to the NICU today. I said “Of course, but can you tell me what’s going on with her brain?” He completely ignored my question and asked me if I would be bringing any family with me. I told him I would be and he told me to bring all of my immediate family including the father of Leila. I knew this was bad, I could hear it in his voice and his apprehensiveness to answer my questions gave it away. I immediately told my mom and I couldn’t stop crying. We rushed over to the NICU and met with the doctor in an empty hospital room. He explained to us that they had found bleeding and it was almost the worst case possible. On her left side she had a grade 2 bleed, which could possibly stop at that point but it could also get worse. On the right side she had a grade 4, which was the worst possible. He told us the bleeding would eventually subside but it was not the bleeding we should be worried about; it was what came after the bleeding. Scar tissue. The bleeding would no doubt leave scar tissue it was just a matter of where and what it would affect. They couldn’t tell us that. It was basically a wait-and-see game we were playing. All I could do was cry. I was frozen and I couldn’t say anything. I just stared at the doctor and thought, “are you kidding me?” He told us with this type of brain bleed she would have some form of disability. We wouldn’t know what kind until she went home and it was the time when she should be reaching milestones. With this type of bleed she could have mental retardation, she could have cerebral palsy, she might not be able to walk, talk, eat by herself, etc. There were so many possibilities but they couldn’t tell me which exactly it would be. They again made a suggestion I didn’t want to hear. They told me that I should take her off of life support. “She wouldn’t have a good quality of life” is exactly what they told me. WHO are YOU to say how good her quality of life would be?! I know they were just doing their job as doctors but I was so sick of it. You are NOT her mother so how could you possibly know what it feels like to hear this. I was determined to take her home however God was willing to give her to me. That was it. I had made my decision. He told me to think about it but I already knew what I wanted.

Days go by and I’m hearing things from my parents that the nurses are saying. They didn’t know whether or not they should be continuing with doing all that they could to keep Leila alive. Are you kidding me?! I told them that’s what I wanted, why wasn’t that made known to everyone. I told them flat out that is what I wanted so they continued on with care. There was one nurse in particular that I didn’t care for. She was so cold and told me again about her quality of life if I continue with this and how it would be bad. I didn’t want to hear any more of it I just wanted her away from my daughter. I don’t want anyone around her who didn’t believe that she could make it. I was tired of hearing the negativity and only wanted positive energy around her. Kristen was my favorite nurse. She took care of Leila as if she were her own. She was so nice to me and always included me in everything. I was able to change Leila’s diaper and take her temperature on a daily basis. It felt so nice to feel useful for once. I felt like I was actually her mother.

As more days go by Leila was getting my breast milk and her consumption was increasing daily. She still needed extra nutrition so they needed to get a PICC line in, which is a peripherally inserted central catheter. They had been trying for days but since her veins were so small they couldn’t get it in. They were starting to get worried about it but continued on with care hoping for the best. Eventually her milk consumption increased so much that she didn’t need the PICC line. She was starting to get 3mL of milk every hour. As you can imagine this was a very small amount but nonetheless it was good for her size. She had lost 3 ounces already so they needed her to gain some weight.

On April 7, 2010 she was stable enough for me to hold her. She was now on CPAP, which means continuous positive airway pressure. This was a step up from the ventilator and was safer for her to continue to use until she would be able to be completely off any ventilation (breathing) therapy. The first day I got to hold her was the best day of my life. As they put her on my chest I started to cry. I couldn’t believe we had come this far. I was finally able to feel her skin on mine. I couldn’t be any happier than I was at this moment. I remember feeling her little fingers touching my neck as she lay on my chest. She was breathing so lightly but it was so cute to her hear her little breaths. This was the first time I also got to see her back since she was on her back all the time laying in the incubator. I put my hand on her back and felt her warmth. It felt so great to touch her. I could feel her heartbeat on mine and it just made me realize she was still really here. She was my daughter. I couldn’t believe the feeling it gave me. I was overwhelmed with happiness. The nurse took pictures of us together and after looking at them I could see how happy we were. Finally we were a perfect family. Other than getting to hold her, that was also the first day we actually heard her cry. It was such a small cry because her lungs were still developing, but it was definitely a cry. My boyfriend and I looked at each other and in awe. It was so amazing I wish we could have recorded it.

On April 8, 2010 my best friend Jordan came to the hospital to visit. He had been there almost every single day, but today we were going to the NICU parents meeting. My boyfriend had to work that day so Jordan said he would come with me. We were in the NICU a couple hours before the meeting and I was able to hold Leila again. This time it was for so much longer. I held her for a few hours. I loved it. This was the second time I was able to hold her and I didn’t want to let her go, but it was almost 7pm which was when the meeting was. I really wanted to attend this meeting to talk to other parents whose babies were also in the NICU. I thought maybe I would have more hope from their stories. If I would have known what was going to happen that night I would have never went. I whispered in Leila’s ear that I would be back later to say goodnight.

The meeting was great. I was so happy that I went because I did hear stories with happy endings. I finally thought for sure Leila would be coming home with me someday. I thanked one of the parents for her story and made my way back to the NICU. Jordan was going to go home but asked if I wanted him to go back to the NICU with me. I said no and he left for the night. I arrived in the NICU to see a new nurse. It was shift change while I was gone so Nurse Kristen left and Susan arrived. I went by Leila’s bedside and said hi to Susan. I noticed Leila’s stomach was distended and Susan told me it was hard to the touch as well. She had a feeling something was wrong but didn’t tell me what she thought it was yet because she wasn’t sure. She said they were going to order an x-ray. I noticed that Leila’s toes were turning purple as well. I brought it to Susan’s attention and she said maybe it was because of the bands that were around her ankles. She took them off and her toes went back to normal. They needed to be on Leila’s ankles so she put them back on but much looser this time. It was barely even touching her skin but yet again her toes turned purple. I started to really worry now. I asked Susan what was going on because I was here just an hour ago and she was perfectly fine and now all this was happening. I could see the worry in her eyes as well, but there was nothing she could really say. She didn’t know. They completed the x-rays and the charge nurse went to look over it. They told me they did find something that they should be worried about but she was going to call the doctor to come and check just to be sure. Finally the doctor got there and took a look at it. She told me what was going on. My daughter had developed Necrotizing Enterocolitis (NEC). Basically her intestines were dying. I couldn’t stop crying. I called my step-dad because he had planned on picking me up that night so that I could spend the night at their house since I was discharged. I cried on the phone and told him that something was wrong with Leila. He told me that he would bring my mom over right away. When my mom and aunt arrived the doctor sat us (me, my mom and my aunt) down in the “Butterfly Room” to explain the situation. She said it wasn’t as bad as they initially thought but that it could get worse. She kept trying to explain to us what Leila’s condition was but we all understood her explanation differently. My mom got so frustrated that she walked out of the room crying. After the doctor explained it to me again I began to understand and was able to explain it to my mom. We were all sitting out in the lobby now and decided that my mom would go home to get some rest and my aunt would spend the night with me in a hospital room that the charge nurse made available for us. I called my boyfriend to tell him everything that had been going on and he said he knew something was wrong. He was at work all day and he could feel it. He had been calling me for hours but I didn’t get service while I was in the meeting. We talked for a while and I cried to him about Leila. He told me that he had been so positive lately and he was sorry if it made me so upset. I was upset because he always made it seem like everything was perfectly fine when it wasn’t. I think that was his way of dealing with it all. He told me that when I went back to the NICU to tell Leila that he loved her. I went to say goodnight to Leila for the last time around 2:30am. Nurse Susan said that I should get some rest so I went back to the room.

At 5:30am on April 9, 2010 I get a phone call from one of the nurses. She told me my daughter wasn’t doing very well and that I should come to the NICU to spend time with her. I didn’t know if that meant she was dying or if she was just really sick and thought she needed her Mommy. Either way I didn’t care, I went to the NICU in a heartbeat. I took one look at her and knew that she wasn’t ok. Her stomach was completely purple now and so were her toes. You could see the veins in her stomach and I knew she was sick. I had been researching NEC throughout the night and knew that surgery was a possibility if her intestines could be saved. I stepped out of the NICU to call my family and tell them to come. The doctor who Leila was normally under the care of had finally arrived that morning and told me to call them. They had done another x-ray to check on her intestines and found that it had gotten worse. The doctor called the surgeon and shared the x-ray with him to see if surgery was a possibility. At this point my mom had also picked up my boyfriend and they were on their way to the hospital. My aunt was still with me and kept telling me everything was going to be all right, but I knew better than that. My daughter was going to die today and I knew it. I guess I was just in denial. My family had arrived and my boyfriend was with me next to Leila’s bed. We were talking to her and telling her how strong she was and how much we loved her. The doctor came up and asked us if we had seen the most recent x-ray. I told him No and he took us over to see it. I looked at it and knew it was bad. Her intestines were full of air and ready to burst. The doctor said the words I never wanted to hear.

“She’s going to die.” “It could be any minute now so you need to spend all the time that you can with her. She fought a good fight and we did everything we could to help her but now we just can’t do anything. This is just inhumane to try and keep her going like this and she can’t have surgery because she’s too young and will never survive it. .”

I cried like I never cried before. I could no longer help my daughter and I felt like the smallest person in the whole wide world. Nothing in my whole life could ever be worse than what I feel now. My mom and aunt walked in and I think I’m going to fall on the floor. My mom asked me what was going on and I just said, “She’s going to die.” I walked over to Leila’s bed and held her hand. I didn’t want her to feel pain anymore. I told her that I was so sorry for everything we had put her through.

Nurse Susan went home for the day and there was a new one I had never met before. I was pissed that there was a brand new nurse while we were going through all this. Why couldn’t they bring back Kristen? She was my favorite. This nurse (I don’t even remember her name now) tried to comfort us and told us that we could hold her and spend all the time we could with her while we took her off life support. I didn’t want to do it but I knew I had to. I couldn’t let her stay like this and watch her suffer from her intestines bursting. Mustafa (my boyfriend and Leila’s daddy) was the first to hold her that day. He had never held her before so this was his very first time…and last I should say. I remember the way he looked at her as he held her in his arms. It looked so natural for him to be holding her. The tears came down his eyes as he started to pray for her. She kept trying to open her eyes and I knew that she knew her Mommy and Daddy were there. He held her for a while until her heart rate started descending. I wanted to hold her while she grew her angel wings. We knew she didn’t have much time so he handed her over to me. I whispered in her ear that I loved her with all my heart. I told her that it was OK for her to go to heaven whenever she was ready and that I just wanted her to visit me in my dreams to let me know that she was happy. I told her that I would never forget her and I would always remember the time we were given with her. I prayed for her. I prayed that God would take care of her while she was up there. Then I told her I would see her again someday and again that I love her. Her eyes were open. They were barely open but I knew that she was looking at me. Her heart stopped beating now and her eyes closed. She looked so peaceful. Her chest was still moving but it was because the ventilator kept pumping oxygen in her. The nurse checked her out to make sure her heart had stopped. It did so she turned off the ventilator. She was really gone now.

The nurse took us to the “Butterfly Room” and said we could spend as much time with her as she wanted. Walking to the room you have to walk by pretty much every single nurse. They looked at me with sad eyes while I carried my daughter to the room. I hated it. The tears kept coming and I couldn’t stop crying. I walked past all of the babies that were still fighting for their lives and holding on by a thread. I prayed that they would make it so that their families wouldn’t have to feel this pain. We got to the Butterfly Room and my boyfriend held me as we sat on the couch. He told me that she was in a better place and reminded me that we didn’t have to take her off of life support. God knew we didn’t want to have to do that and he welcomed her into heaven before we “pulled the plug”. His words didn’t really bring me comfort to be honest, but I know he tried his best. I knew that my daughter would be taken care of; I just wish it were by me.

The Butterfly Room was the very last place we spent time with our daughter in that hospital. It was a room painted with clouds and a nighttime sky. The walls were adorned with all kinds of different butterflies. It was peaceful and I guess that was the reason they painted it that way. Women would go in there to pump for their baby in the NICU or they would just go there to hold their baby. I went in there to hold my baby who was no longer there and for some reason I was peaceful in that room. She was now in a place that we only dream of going our whole lives and that made me happy.

**Leila’s Story is missing many details and only a fraction of it even conveys how much love I have for my daughter. My love for her cannot be told in just 10 pages. It would take a lifetime and then some to even begin to explain our bond. The love she brought to my life is truly a gift from God. I love her with every bit of my heart and I will never forget our story.**

Kalialani blogs at The Butterfly Room
You can contact her at


Antoinette said...

=**( Although we are friends, and I know this does not change the tears falling from my eyes...I am so sorry Leila is not did everything you could and you are a good momma to her...she will always be a part of you...xoxo

TanaLee Davis said...
This comment has been removed by the author.
TanaLee Davis said...

Okay so the post I wrote had a few missed spelled words. Your story has touched my heart and I completely understand your emotions since I too had a baby that suffered from NEC. I have much more then that to relate to you with. You can read my story on this website. My daughters name is TanaLee, she was born in OHSU hospital here in Portland, OR. I would love to talk with you, my email is:

Unknown said...

I am so sorry to hear about your sweet Leila. I lost my Layla in Feb. 2009. Love her name and I am sure she is just as beautiful as her names is. She seems to have touched many lives and I wish you nothing but love on this journey as you grieve your sweet princess. Thank you for sharing your story. *hugs*


Tara Jones said...

I know the pain of having to make the choice to take your child off life support.. And its a REALLY difficult one. I'm so sorry you went through this, My thoughts & Prayers are with you!

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