I don't know if I ever posted about this but if I did then I apologize for repeating it and if I didn't then here it is. *A part of it is in the page that says "Leila's NICU stay" but I thought I'd expand a little*
The morning Leila died we decided that we wanted to get her buried right away. I didn't want her sitting alone in some morgue for a week in the dark. I just couldn't bear the thought of it. It seemed like time was going by so fast though and it was almost too late to drive an hour away to the cemetery she would be buried at. We called the cemetery and made arrangements to try anyways. We would be transporting her ourselves so the hospital had to release her body to me. It was easier than I thought it would be. We took the paperwork for proof just in case we got pulled over and I walked out of the Butterfly Room with my baby in tow as all the nurses and parents stared at me with my face covered in tears. I hated that they had to see us like that. I felt so vulnerable. I was angry that WE were the ones walking out with our dead baby. Why were we the "chosen ones"?
Leila's new nurse took us out the back way so no one would ask me to see the baby as we walked out. In a sense I almost felt like I wanted to be seen by everyone so they'd know that I was her mother. On the other hand I couldn't handle anyone asking to see my baby and me having to tell them she was dead. Can you imagine being the one asking to see a baby and the mother telling you she can't because the baby's dead? I'd die from guilt.
We walk to the car where my mom and stepdad are waiting. My two friends are also in the car because they have been there all morning to show their support and they wanted to come with us to bury her. I decided against a funeral. I didn't want to share Leila with the people outside of my circle. I wanted her all to myself. My mom asked me multiple times whether I was sure about my decision and told me that she didn't want me to regret it. There were family members in Washington waiting for us to let them know it's OK because they also wanted to be there for us. I said no, we were going to do this alone. My mom was on the phone with someone from the funeral home who said it was now too late to bury her today. They said we could bring Leila's body to the morgue and come back tomorrow morning to have her buried. I cried and told my mom I couldn't leave her there with those strangers. She told that to the person on the phone and they said we could keep her for the night.
(Some of you might think this as weird, creepy, morbid etc. but you never know what you will do in that certain situation.)
I said OK. I would keep her for the night. The funeral home said she would be OK for one night...By OK they mean her body wouldn't decompose too much. I hate even saying that but that was the reality of it all. We drove an hour back home and Mustafa and I stayed at my parent's house. They said Mustafa, Leila and I could take their room for the night. We didn't want to freak the kids (my little brother and sisters) out so when we got home we went upstairs and kept the door locked. They asked about me a couple times but my mom kept telling them I wanted to be alone for the night.
The whole night I didn't want to put Leila down. Even if I had to go the bathroom I told my mom to come in the room and hold her for a while. My uncle (mom's brother) would be flying in from Idaho that night. I had changed my mind and said we would be having a small graveside service the next morning. My mom was right. I would have regretted it if I didn't agree to more family being there. My Uncle arrived but I didn't go downstairs to say hi. I stayed in the room with Leila all night. I kissed her cold head and wished I had kissed it when she was alive. She had severe brain hemorrhaging in the NICU so I wasn't sure if kissing her head would hurt her or not. She was wrapped in her pink polka dot blanket with the sheep on it and nothing but her head exposed. Throughout the night I thought about opening the blanket and looking at her body, but I was too scared. I didn't know what it would look like after she was dead. Right before she died her stomach was hard, distended and purple from the NEC. Her toes were purple as well and I just didn't know if they would look much worse. I felt like a bad Mom because I couldn't even look at my baby. I just didn't want to see her hurt. :(
Mustafa washed her body while we were in the Butterfly Room and wrapped her in her blanket. He seen her body after she was already gone but I just couldn't. The whole night Mustafa never asked to hold her or see her. He told me he was scared she would decompose throughout the night. [Not in those exact words, but that's what he meant] In his culture he's not supposed to look at the face of the dead with sadness because they are in a better place, so he chose not to look at her at all; but he knew I needed this. My Auntie in California was getting updates throughout our hospital stay from my Mom, so my Mom called her after Leila died and told her what happened. She also told her that we were keeping her body for the night. My Auntie told her she didn't think it was right (not in a mean way, she just didn't understand it). I honestly didn't care. No one I know has ever been through what we had just been through, so I didn't expect everyone to agree with what I was doing.
The night was kind of blur, but I do actually remember having a sense of humor and cracking a joke or two to lighten the mood. How the hell that happened, I don't know. I'm sure I was still in shock.
Ahh...now I remember a little of the night. Mustafa had gotten fast food for us to eat in the room. We had chili cheese fries and watched a little TV. Now that I think about it I don't know HOW the hell I didn't fall out with grief that night. Maybe it was the fact that I felt comforted Leila was in my arms?...I'm not sure. It's all fucked up any way you look at it. We went to bed and still I held her. I readjusted to make sure she was comfortable...but who was I kidding? She didn't care. I kissed her goodnight and we (Mustafa and I) fell asleep. I woke up once throughout the night and realized she wasn't in my arms. She was lying in between Mustafa and I and I was pissed that I had let her go. I quickly scooped her back into my arms and went back to sleep.
The next morning we buried our daughter. I'm not ready to write more about that day and I'm not sure I'll ever be able to, so for now this will do.
It's all still unbelievable to me.
Leila,
Now that I'm remembering your life and death I feel SO guilty because we kept going with care. I feel BEYOND guilty that I let the doctors and nurses poke you and take blood so many times for so many days. I hated seeing them do that to you, but I thought eventually it would bring you home with us. In a way it did, but not the way I had envisioned. I'm SO sorry mommy let them do that. I feel so selfish and I just don't want you to think I meant to hurt you. I did everything I could to save you and I hope you know that. I love you with ALL my heart and couldn't imagine life without you...but now I am living it. I hate living without you. Time has gone by WAY too fast and soon you will have been 6 months old. I wish so badly that you were still here. I don't care if we'd have MILLIONS of dollars in medical bills or if I'd have to quit my job to take care of you in case you'd have special needs...I just want you here. :(
I Miss You Leila!!!
Love always,
Mommy
11 comments:
Oh my, I am so sorry. I don't even know where to begin. I'm glad for you that you got that extended stay with your daughter, even being able to bring her home like you did. No one can understand unless you've been there. We had to hand over Jenna to one of the nurses and it kills me just thinking about it. She wouldn't be buried for another day.
Just the other day I was thinking about all the times they had to poke Jenna and all she went through. Suddenly I was overcome with guilt too, but I finally realized that any parent would do it, and I would die of guilt had I not fought every last bit for her life. I still hate that she, like Leila went through so much and we still lost them. It just doesn't make sense this side of heaven. At all.
Thinking of you and your Leila. Thank you for sharing this part of your story.
xxx
Oh mama, I cried as I read your story. That extra night with her sounded so special and I'm so glad you got that time with her. I would have loved tondo that with Genesis. I know what you mean about the guilt. When I had genesis I was to scared to see her right then and there. When I was finally ready and asked for her they said the mortuary already picked her up. I felt like such an awful mother that 1 I didn't even see her and 2 that I had no idea where my child was. I also know about the guilt of not opening up the blanket. I wanted to see all of her, just once, know what she looked like. I never did because my husband didn't let me. I never even saw for myself that she was a girl. Not that I don't believe the doctor and nurses... It's just something I wish i knew for myself. Anyway enough about me, thank you for sharing this most special memory of Leila with us. She was so lucky to have that night with her mommy and daddy. <3
I have the blanket Jacob was wrapped in and I sleep with it every night. I also imagine what it would be like to have my living Jacob wrapped in the blanket beside me while lying in bed.
I don't think it is strange at all that you kept Leila with you overnight. I had to leave Jacob at the hospital because we had an autopsy done. I felt terrible, imagining him there all alone, cold and in the dark. Even though I knew he couldn't feel those things, it still bothered me. It bothered me that I didn't know that the funeral home had his body until a few days after they got it. I hated not knowing where he was and what was happening to his body.
I joked when I went back to see Jacob with my sister the night of the day he was born (she had flown in to see him). I went up to the nurses desk, said my name and that my baby is in their fridge. I hate that I did that now. I feel like they would think that I was joking around about my baby being dead. But I'm sure they understood. I was in such shock.
The guilt is terrible, but you thought you were doing what was best for Leila. You couldn't have known at the time that all of the medical treatment wouldn't work in the end. Leila knows that you were just trying to help her.
we will NEVER have enough times of our babies in our arms. i am in tears after reading this.
I am in a flood of tears. I started to think about when Emma was in the NICU and everything she went through. It is heartbreaking that they went through so much and are not here in our arms today. I think it is so special that you got to spend that night with Leila. Oh what I would have done to have that extra time with Emma and Chase.
HUGS!!!
TEARSSSSSSSSSSSSSSSSS
as much as i know this story from you, it doesnt hurt any less to know what you and mustafa have been through......i wish you could know how much i love you and leila and how much that last night you and her and mustafa had will forever be special to me...and to her....God bless you kalia, and i know that the pain has to be there of holding that blanket without your baby in it =***(
Leila, you got so lucky to have a mommy like this. She tells us so many things about you, and now i even know how much you liked pickles!! you did a good thing that night keeping mommy safe and comforting her. you are special to me my niece and i will forever think of you when i see dragonflies and princesses...you are a princess to me
I am crying, I am so sorry. You have been through so much. You did all you could for Leila. I am very proud of you. You are an amazing mommy.
I wish I would have been able to bring Sami home with me, not as intended but I am sure those moments you will treasure forever. ((HUGS))
Thank you for sharing this story - I think it is beautiful that you spent that last night with her. I would have done the same thing.
I'm so sorry you don't have your baby girl with you - it's just not fair at all.
((Big Hugs))
Your story brought me to tears... I am so glad that you got to hold your baby and sleep with her. I wish I had done the same in the hospital. I wish I had held Valentina a LOT more than I did. <3
Dear Kalialani,
I just found you blog and wanted to tell you how beautiful your daughter is. She is absotulely perfect. I am so sorry for everything you have gone through in having to say goodbye to your little girl. I also wanted to tell you that I think you did everything exactly right and you shouldn't feel guilty or selfish at all. You gave that little girl every chance at life that you could. You got more time with her because of it, but she also got more time with you. She got to know her mother's love. There is no better gift you could have given her. I bet if you were able to ask her she would tell you that it was all worth it to be with you. You are her mommy and you will forever be. I absolutely love her name to. It is just so beautiful. I made you a photo of her name written on a blade of grass to add to her photos, but I don't know how to give it to you. I can email it to you if you would like. My email is blessednotcrazy@aol.com and my blog is http://micahsgift.blogspot.com/ . I would also like to post the photo on my blog for Leila if it would be okay with you. My blog is just for angel babies and their families. It is in honor of my angel baby Micah. Please stop by or email me so that I can share Leila's photo with you. You are in my thoughts and prayers.
Love,
Mary
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