Christmas Eve

Sorry all for not writing for so long...life has been so crazy it's just been really hard to keep up with my blog anymore :(

Today though I felt I had to write...facebook has this new "timeline" profile where you can easily go back and look at all the past posts, comments, pictures...everything you've ever posted on facebook before. It's a gift and curse all in one. Of course I was curious to look back at my posts from when Leila was born. I thought it was a good idea at the time...but it only made me feel worse. I had so much hope for her, for us...and then on April 9, 2010 that all came crashing down. I remember not wanting to post anything about her dying that day...so I waited. Then people started asking me for an update with her and I finally had to post something on the 13th. I remember this chunk of time like it was yesterday...how I felt, what I was thinking, what people said to me. I was crushed to say the least. Looking at those posts honestly ruined the holidays...not that they were so spectacular to begin with, but Christmas is my favorite holiday. Now that Leila is gone and I have no other children, it's so hard to be really excited for the holidays. All the presents I'm buying for other people has got me thinking about how I should be buying them for my baby instead. I'm not buying clothes or toys for her this year...only things in memory or in honor of her...and I.Hate.It.

I miss her so much.

Leila,

I'm sorry I haven't written to you in so long, but I think about you daily, no lie...and even more than that. I've seen you in my dreams recently and I'm so grateful for that. I wish I could see you more than that, but I know I can't be selfish. I can't believe your second birthday is coming up so fast and I'm not really sure what to do this year. Your mom has been so caught up in trying to keep busy, that I haven't even been able to sit down and just breathe for a minute. I hope to be able to get back to doing things I love...mostly crocheting...but we'll see. I know your Daddy and I aren't together anymore but we plan on coming to see you together. I hope you know we both love you SO much and think about you constantly. You are never forgotten, my baby.

Mama loves you sweetie.

Why do the good die young?

I haven't posted here in a long time but I wanted to do a quick update...hopefully quick

On May 26th my mom and I were called and told my Uncle was in the ICU. He had just undergone kidney surgery and had some heart problems during the surgery. We rushed to Washington as fast as I could where we spent three of some of the longest days of our lives. There was always someone holding my Uncle's hand at all times. On May 28th my cousin asked me if I wanted to hold my Uncle's hand. I sat next to my Uncle held his hand and rubbed it hoping he would wake up and smile at me but he was under a medically induced coma and couldn't do anything like that even if he wanted to. The nurse noticed something wasn't right and checked for a pulse, they couldn't find it. We were told to leave the room while they tried to get him back. The minutes seemed like days. We finally were called back into the room but were told that with all of the cardiac arrests he'd had the past few days, the strain on his heart was too much to handle now. As a family, we decided we had put him through too much the past few days. He went to heaven on May 28, 2011 around 7pm. That was the day after my Tutu's (his sister) 9 year angelversary. This would be the second death in my family after Leila. I can't even begin to tell you the hurt I feel after the death of my Uncle Kimo. I never thought this day would come so soon. I was JUST with my Uncle a couple weeks before...I don't understand why the good die young...

When my Tutu died my Uncle kind of took over as the "dad" and "grandmother/father" my mom and I were missing in our lives. He was with us through every important event in our lives...and even the not so important ones. He was there when Leila was born. He drove 3 hours each way just to see me and Leila. He brought dinner to the hospital for the whole family. He was there when Leila died. He was there for weeks afterwards. He was always there. My heart is still so heavy...especially for my cousins and auntie who are now missing a Daddy and Husband. He was the best Daddy anyone could ever ask for...I just can't believe he's gone...and I was the last person to hold his hand while he was still alive :(

His funeral was almost 2 weeks after. For the last two funerals I recited the Lord's Prayer in Hawaiian. This one I would do the same. It brought me all the way back to 9 years ago when I first recited it at my Tutu's funeral. I couldn't keep my composure. This time was the worst as far as anticipating the funeral. I was so nervous I could vomit. To get up in front of hundreds (yes there were hundreds) of people at his funeral and recite the Lord's Prayer in Hawaiian...I didn't know if I could do it. I prayed so hard beforehand for Leila and my Uncle to give me strength. I got through it just fine. I almost felt numb during the whole funeral. It was a beautiful service if there ever was one.

Now it's almost been a month and it hasn't gotten any easier. I watch my cousins as they sit quietly thinking about my Uncle and why this has all happened to him. I know the feeling. I would never wish this on anyone but I wonder why him? I'm going to be honest...why couldn't God take someone else? Someone who has done nothing but torment my family endlessly and laugh in our faces when someone we love so much dies? :( I just don't understand...

I'll leave with that...

Leila,

I can't tell you how jealous I am that most all of my favorite people are now in Heaven...I wish I was there with you all. I know you guys are all happy & healthy and I can't imagine you guys miss it down here...but I miss you all. Please give Uncle Kimo the biggest bear hug from me and tell him I miss him so much. I miss all of you. I love you all to pieces and hope that someday we will all be together again. I love you my sweet baby.

Love,

Mommy

Dead baby joke...

I love how my own cousin makes a "dead baby joke" on her facebook. When I comment with "lovely" sarcastically of course...she "likes" my comment. THEN I get a text from her saying, "My post wasn't anything towards you. Sorry if you took it the wrong way, and thought it was to you, it wasn't my intention whatsoever. Just know my posts are never directly to you, unless I say so. It was an inside joke, and I really shouldn't have to explain myself what it was for. But yeah, again; I'm sorry." Um notice the part I put in bold...how would you take that? Because I take that as her saying FUCK YOU for being offended, get over it...Am I wrong? I want to slap the shit out of her...excuse my "french" I am pissed! UGH *#&$(*&^%$#$%^&*&^%$#$%^&^%$#$%^!!!

Mother's Day #2

I'm sitting here hugging Leila's blanket and staring at her picture. I hate this holiday...I really do. I'm not really a mother anymore...at least I don't feel like one at all. People walk past me and don't see a child in my arms...they don't see me as a mother and neither do I. The first Mother's day I had was exactly a month after Leila died. It goes without saying that it wasn't easy at all. I guess I thought it would get easier...who was I kidding? I'm sitting here bawling my eyes out feeling so sorry for myself again...and here I go again asking the same questions...why did MY child have to die? Why her? Why ME? On top of that most of my own family doesn't recognize me as a mother :'( That hurts the most, but I get it. They either don't feel comfortable saying it because they think it'll make me upset..or they don't think they should say it because I'm NOT a mother anymore...either way it's all shitty. This is #2 of MANY to come...devastating...I'm devastated, heartbroken and emotionally drained. I don't know how I've made it this far and knowing I have many more to go (unless of course something happens to me unexpectedly) just kills me. Why does anyone have to go through life with their child/ren dead? It doesn't make sense...never will. No matter how many times I try to rationalize it, it never.gets.easier...never. My biological dad just added me on facebook...random and weird...and do you think he'll say Happy Mother's Day to me? Fuck.no. I'd roll over and die before I'd expect to hear anything from him acknowledging Leila...but does it hurt my feelings? Hell yes it does.

Mustafa gave me a kiss this morning and told me Happy Mother's Day before I went to work. He's a sweetheart and doesn't really know what to say to make me feel better, but I appreciate the acknowledgement. My family and I went to breakfast this morning...of course everyone was there for Mother's Day. Mothers and babies EVERYWHERE...I shouldn't have gone but it was for my mom that I went. My uncle called my mom to say Happy Mother's day to her and I. I just started bawling in the restaurant :'( I seen one lady stare at me as I burst into tears and do you think I gave a fuck? NO. I really don't care anymore who feels uncomfortable with what I do or say about my baby dying. I'm over it. Anyways...wishing babyloss mamas everywhere a peaceful Mother's Day and wishing I could give you all a hug in person. Love you guys, thank you for being my rock.

Leila,

Mama hasn't been here in a while. I haven't forgotten about you of course. I'm sorry I didn't come see you while I was in town yesterday. :'( I really wanted to but no one could make time to take me over there. I'm really sorry sweetie. I miss you SO much and today hurts my heart knowing that I don't get to spend it with you. You are all I want for Mother's Day and I can't have you. It just isn't fair. I hope Tutu and Tutu Nui are taking good care of you up there and I don't doubt that they are. I only wish it was me being able to do all those things for you. Please wish Tutu & Tutu Nui a very Happy Mother's Day for me baby. I miss you all and love you with ALL my heart.

Love,

Mommy

4.10.10 your funeral

I had plenty of time to get ready, but I didn't. I couldn't put on make-up and curl my hair for your funeral. Maybe that was my way of saying fuck you life. (excuse my language) I didn't give a shit about anything but you. I held you instead of getting ready. I felt like there was a lump stuck in my throat the whole day. Uncle Josh had come to town from Idaho the night you died but I only seen him the morning of your funeral. I didn't want to leave you in the room alone. I came downstairs, saw him and cried in his arms. I couldn't believe he was here for my daughter's funeral. How did we get here? The kids (your aunties and uncle) hadn't seen you and didn't even know you were in the house. We didn't want to freak them out, so we didn't tell them. We were getting ready for the funeral and the kids went with Uncle so we could take you with Tutu and Grampie in their car. We picked Uncle Jordan and Chris up on the way out. I could barely look them in the face. On the way to the funeral was extremely stressful. I cried the whole way. We finally got there where everyone was awaiting our arrival. We were late...like always. I stepped out with you and Auntie Nani & Uncle Makoa wanted to see you. They gave you a kiss on the forehead. Auntie Nani is a softie and so is Uncle Makoa so they cried really hard as soon as they seen you. I could see that your death really affected them even though they hadn't met you until now. I sat with you on the chairs set up around the hole they had dug for you. I was the only one sitting. It was awkward as hell sitting there with you as everyone stared at me. I didn't want to be there...well of course I didn't. Daddy, Uncle Waled and Uncle Haythem took you and prayed over you as they laid you in the ground. Daddy had never been to a funeral his whole life. His daughter's was his first...how fucked up is that? Papa shoveled some of the dirt and put it over you. We watched until the whole grave was covered. They stuck an ugly gold plaque to mark where you placed. I'm happy (and not) to say that that ugly thing is replaced with a beautiful grave marker now.

The first year after your death is now complete. Do I feel any different than I did the day you died? In some ways yes and others no. I still can't believe you're gone and I hate to accept it, but I have (sort of?). I've changed...a lot. I've matured a lot but I'm also a much more bitter person...unfortunately. I still can't look at a pregnant woman and be happy for them. I still get jealous when I see moms toting their babies around in stores. I still hate that I walk past the baby section and am not getting anything for you. I hate that all of my friends are starting to get pregnant for the first time and I have to see their bellies grow (no offense friends), I hate that no one really gives a shit anymore about me being sad, they're over it. I hate that I feel pity for myself...is this me being pitiful? who knows...I could name tons more but I'm out of energy being so negative.

Today was not a good day. Matter of fact, it might have been the worst along with the day you died. I just miss you so much. What more can I say?

I love you Leila.

the day you died 4.9.10

I've gone over this day a million times in my head. It's been a year and still the details of this day are engraved in my memories. That morning they showed me the results of your x-ray...I knew what the outcome would be, I just didn't want to believe it. I thought there could be some other solution...but there wasn't. You were too young to even attempt surgery on your intestines. They told me you wouldn't survive. But really I thought, how could they know? They thought you wouldn't survive even being born and look at you then...You were doing so well. I accepted their answer though. I didn't want to put you through anything more than what you already had been through. Even though I want to believe you could have survived the surgery, I don't think you would've. It's not that you weren't strong enough...you were. You had strength beyond anyone's imagination. It was your body that wouldn't make it. I don't blame it. It was my body's fault you were born so early anyways. I blame my body. I walked to your bedside and cried. I thought maybe a miracle would happen. Maybe your intestines would heal themselves by some miracle and maybe your brain hemorrhaging would leave no damage. That would only happen in a story book though. Not in real life. I had to accept the fact that you were going to have to leave us that day. Your body was weak, I could tell the fight was over. Your daddy and I sat by your bedside and just stared at you. We had no words. None of us ever thought this day would come...even knowing how low your chances for survival was. Daddy hadn't got to hold you yet. Today he did. The nurse took a few of your IV's out and handed you over to Daddy. He held you and cried so hard. I watched the tears stream down his face as he looked at you and touched your tiny fingers. I don't even recall how much time had passed, I only remember it went fast. It wasn't too long before your heart beat started slowing down. We knew it was time for you to go. Daddy handed you to me and I held you. Time didn't slow down at all. I whispered in your ear and told you it was OK to go and kissed you goodbye. Your eyes opened one last time and it was like you went to sleep...peacefully. They turned off the ventilator helping you breath. I felt your fingers and they were already cold. The color from your face started to leave. I knew you were gone. I walked with you in my arms past other babies, mothers and nurses. They looked at me because they knew. I was crying so hard carrying you. They put the picture of the leaf with a drop of water on the door. I knew that was the sign for don't bother the grieving family in the room. I hated that sign. Hours went by in the Butterfly Room. You died at 9:31am and by the time we were done in the room, it was close to 4pm. Daddy washed your body with Uncle Haythem while I went to the NICU waiting room to see our family. Sitting in that room was absolute torture. I watched families come in with Congratulations balloons waiting to see the newborn babies. I couldn't believe I was there. How could I be sitting in that room while my dead baby was in the other room?...and I was still alive. How could I be "ok"? Why didn't I die with you? I still don't know how I survived that...how I'm surviving it. I can't even begin to tell you how much my heart aches for you. We tried to make it to the funeral home an hour away to have you buried that same day. I couldn't bear leaving you at the mortuary by yourself...we ended up taking you home for the night. I treated you like you were still alive. I looked at you, kissed you, held you the whole time. If I didn't hold you, Tutu held you. I don't even think I took a shower. I remember pumping that night. I had waited to pump for too long, so my boobs hurt. It was like life's sick way of torturing me even more. Reminding me that you wouldn't need that milk. Daddy and I stayed at Tutu & Grampie's house that night...well so did you. You slept right next to me...and surprisingly I got a lot of sleep. The next morning is when it hit me...

4.8.11

This time last year I was holding my child. We took a nap together. I spent hours in the NICU that day just dreaming of the day we'd be able to take her home. That night was NICU parents pizza night. I wanted to go and meet other parents and see how they all were coping. It was good for me. I was the first one there, so I had a long talk with the woman who planned the gathering. She had 3 kids, all born premature. Her youngest was born at 26 weeks. She survived and came out with only a learning disability. That was when I held on to my hope, despite what the doctors told us. All the parents talked about how they went into labor and what was going on with their babies now. One of the ladies had twins. I kept thinking how rude she was when I heard how she was talking to another parent. I don't remember word for word what she said, I only remember her telling the other mother that she was lucky that all her baby went through was such and such...at least he/she was still alive. One of the mother's twins died...that day I thought how rude. Now I understand. She was in pain. Of course she was, she was a BLM...only I had no idea how she felt...until the next day. When it was my turn to talk I told our story. You were the youngest out of all the babies. Everyone was amazed you survived. They told me they'd pray for you. I was so thankful and walked out of that room feeling so much better about the decisions I had made. Knowing there could be a chance you'd live and live a "quality life" even if that chance was so little...I'd take it. I went back to the NICU around 9pm to say goodnight to Leila before I went back to my parents house to sleep. I would have spent the night at the NICU if I could. Anyways, when I got back is when things started going downhill. I took one look at her and knew something was wrong. Her stomach...it was distended, hard and it was clearly turning purple. Her toes were turning purple. I asked the nurse what was going on and she looked perplexed. I could tell she knew something though. She told me she wasn't sure but when she came in for shift change, she noticed something different as well. She ordered x-rays to be taken immediately. They had an idea of what it was but wanted to confirm before they worried me. I stood back as they took x-rays of her belly. All the while I was praying that everything would be OK. That night is when everything changed...

Leila,

I'll never forget that day. You were so peaceful in my arms. I held you so close and loved every single minute of it, not taking any of the minutes for granted. Had I known you'd get sick that night, I would have stayed. I had no reason to leave you, I only wish I knew that sooner. I wish I would have had more time. I don't know if you knew you were going to die and only waited for me to be able to hold you or what...all I can do is hold on to that moment for the rest of my life. I don't want to ever forget how I felt holding you in my arms for the first time, and then again the very next day. Those two days were the most amazing days I spent with you in that NICU. I hope you know that I love you more than anything baby girl. Mommy misses you.

Love,

Mama

Remembering 3/31/10

So...right now I'm EXTREMELY emotionally drained...I wasn't going to do this update til later on today, but I just can't sleep...or choose not to I guess. Dr. called me this morning (3/30/10) and said they did the ultrasound on her brain...it wasn't good news. They found a LOT of bleeding and he wanted me to come in (with my family he said) I immediately think the worst and start crying. I asked him "what does this mean?" He wouldn't tell me over the phone, he insisted that we come talk to him in person. We come in, sit down, he explains to us that she has hemorrhaging on the left and right side of her brain. The left side has a grade 2 hemorrhage and the right has a grade 4, which he says if this was the case in an adult it would definitely kill them...the only reason why she isn't dead is because she's a baby and her brain (skull) hasn't closed up yet thus relieving the pressure that the bleeding would normally cause in an adult brain. The bleeding in her brain is not really the concern though, it's what the bleeding leaves behind (scar tissue)...the bleeding will eventually work itself out, but because there was so much blood this causes fluid to fill the ventricles expanding them and damaging important functions of the brain...neurons need room in this part of the brain to fan out and "talk" to other neurons...the less connections these neurons make, the greater the possibility is for brain damage...anyways there is just SO much information we were given today...NOTHING I wanted to hear. The Dr. basically told me again 2 options: choose life and fight as hard as we can to "save" her which just means they could put in her brain what's called a "shunt" (a small hole in the brain that allows the fluid to be drained)...this doesn't mean she's "fixed" by all means...they still are not in charge of what damage has already been done...that's up to God. Doc says that after this there is almost no chance that her quality of life would be a "good one"...not exactly in these words, more tactfully put of course BUT that's basically what was meant. Quality of life meaning she may have a disability like cerebral palsy, epilepsy, she may never do things "normal" babies do such as walk, talk, crawl, eat, etc...she may be mentally retarded...there were SO many things that could happen I can't begin to list them all...I'm sorry so back to my options...number 1 was choose life and number 2 is basically take her off life support right now...well I can tell you this much, I will NOT be taking her off life support...if she was meant to die right now I believe it would happen whether she's on life support or not. She's still functioning @ this point, she's taking her feedings, pooping, I mean everything a baby should do...no she can't breathe on her own but if she was meant to die the machine just wouldn't be able to help her stay alive regardless...that's what I believe anyway...Sorry if I'm rambling I just want to make sure I get everything out :/ like I said before, there was SO much information given to us today it was overwhelming...I don't really feel like reading over what I wrote because it's just too much but I just really need to pray on this...I need some guidance as to what I should be doing...I don't know if I am/ have been making the right choices for her. I mean of course I want to believe that by giving her a chance to live that WAS the right choice but if this turns into her "quality of life" not being "good" at all then I'm just not sure...I just want her to be healthy first and foremost and then HAPPY...that's all I want...I don't understand why all this is happening. I really wish I knew. If anyone had a preemie baby with brain hemorrhaging please just tell me your story...good or bad I just need to know how everything worked out...do you feel you made the right decision?? Anyways...everyone I know I always say this but PLEASE PLEASE PLEASE pray for Leila!!!...all I want is POSITIVE prayers though. I don't want anyone thinking about anything bad happening because I believe when you think about those negative things you attract them to you...
Thank you all for listening to me rant!
~Kalialani

(part 2)
So today was REALLY not a good day for me...I'm SOOOOO SAD I'm REALLY tired of my baby's nurse telling me the same crap the Dr. told me...yes, thank you, I know my daughter might have ALL these disabilities and she might be a vegetable...well she might not! so how about you tell me that too?...I can handle the bad news...well maybe I can't, but they make it seem like I'm not fully understanding...I'm NOT STUPID, I understand the situation, I'm just under a lot of stress right now because OF COURSE I want my daughter to live...who wouldn't? and OF COURSE I don't want to hurt her! but who are we to say that she doesn't deserve to at least TRY to live and fight? We've already come this far. I can't say "pull the plug", HELL NO, I won't!
Today or maybe it was yesterday?...(all the days run together for me now :/ ) they tried to put a PICC line in :/ They STILL can't get it in (her veins are too small) they said there have been smaller babies that they could get them in (it's not about her size) it's just about the size of her veins...so they're going to wait a few days to give them a little time to grow and then they will try again...I REALLY hope they get it in soon because they said that IV for her nutrition needs to come out because it looks like an infection will start to form around her belly button where the IV is. It's turning a little red so they're keeping an eye on it and cleaning it with alcohol but it really needs to come out!
They've increased her feedings to 4mL every 2 hours. She had a little residual I think because it's gone up pretty significantly kind of fast, but they're keeping an eye on it. They have her in a more upright position so that if she spits up it won't go back into her lungs (I believe that's what they said) :/ anyways I think that was all for today...First and foremost I need to pray that her veins get bigger so they can get this PICC line in and take out the IV in her belly button because if she gets an infection she probably won't survive it
PLEASE PRAY FOR LEILA!!!
Thank you all SO much!!
~Kalialani

Remembering 3/29/10

So today the nurse says Leila is back on oxygen rather than breathing room air :/ It's OK though I know she'll be back on room air as soon as she's ready! Her feedings are now 2mL every 2 hours rather than every 3 hours. I really think my milk is helping her! :) and by the way her skin looks GREAT! If you would have seen her the day she arrived compared to today, her skin looks SIGNIFICANTLY better :) She's getting more pigment to her skin and it doesn't look so transparent like it did before. They say the bag that is around her will probably come off when she's between 2 to 3 weeks. I'm pretty excited for that to happen. Then I can see her body and she won't look like she's just wrapped in a trash bag :/ She's back on insulin, but that's expected to change pretty frequently...one day she'll be on it, the next she's off!...One of her tubes that was in her artery checking her blood pressure has come out, so now the only tube in her belly button is the IV that gives her nutrition :) Once that comes out and she's off the ventilator then I can hold her :) (God willing) I think that's pretty much all that's gone on with her today.

Thank you guys for reading!
~Kalialani

This REALLY Hit Home **spoiler alert**

Did it anyone catch Grey's Anatomy tonight? I called it. Don't read if you haven't watched it yet and don't want to know what happens...

I knew they were going to get into a car accident and end up delivering the baby early. 23 weeks...Can you say WOW?! This episode REALLY hit home for me tonight. Leila was born 23 weeks 6 days. The baby was tiny...1lb 1oz...Leila was bigger at 1lb 7oz, but still tiny...I held my breath as they carried the baby out of Callie's belly and tried to revive her. When she took that first breath I let go and the tears did not stop flowing. It was SO overwhelming. It brought back so many emotions of having to give birth to Leila so early and so little. It's starting to feel like "remind Kalia she has a dead baby week". So many triggers, let me tell you. Oh and when "big" Grey is telling Derek how fucked up (excuse my language) the universe is, I nodded in agreement and laughed. She's SO right. I can't find ANY reason the universe chooses people randomly to let suffer...maybe I haven't gotten to that stage where I can understand and appreciate what I've been through like some others I've seen...I'm just not ready yet. As far as the baby goes...I have no faith she'll survive. It sounds heartless and cruel, but I already know the ending to so many stories like mine and so many others'...how can you possibly believe she'll live? Callie will end up being a BLM just like us. :'( I know she's not real and she's just a character in a story, but we're SO alike you just can't help but feel connected to her. I absolutely have to watch next week. It's like I want to relive my experience. I just want to feel normal again...like I'm not the only one that this has happened to...like I'm not the only one who feels the way I did about having a micro-preemie. So many emotions...

On another note, today I met THE sweetest woman. For my senior capstone I decided to take a Lesbian and Gay class. I said something about my family and at the end of the class one of the women came up to me and told me how brave I was for speaking up. It was about the Hawaiian people and how (haole) Americans have stolen our land and completely disrespected our culture and values...anywho, we got to talking about how my cousin recently "came out". My auntie texts me the other day and said she feels like she "lost her son". I, actually having lost a child, & understanding how this feels, can tell you that having a child whose gay does NOT compare to having no child at all. I explained to the woman I met how I HAVE had a baby and lost her and how much of a slap in the face it was to hear my auntie completely take for granted the son that she STILL has. She's so worried about who he decides to love, that she can't appreciate that her child is still healthy and ALIVE and that's what really matters most. She needs to accept him for WHO he is and stop worrying about shit that he did not choose. Anyways, this is getting off topic, what this is really about is how sweet the lady was to me and how much we connected. She hugged me, rubbed my back and was genuinely sorry that I had lost my child. We talked for much longer after that and I can definitely say I've found a friend in this 60 something year old woman. She's the sweetest "stranger" I've met in real life. Thank you L for your kind words today.

Leila,

Did you WATCH that episode with me tonight? Oh my goodness all these thoughts went through my head about when they tried to revive you. Did it take long? Who was there? I don't even know the answers to these questions because they took you away so quickly and I was out of it. Why didn't I even think to ask these questions? I wish we could have that happy birth moment every parent dreams of having when they're pregnant with their 1st child. Now my only thoughts from here on out will be is he/she alive? It's terrible, I know. I hope Mommy can one day be that naive mother I once was, but I don't think that's ever coming back...

I miss you little one...you can't imagine how much...Even though you're gone I still look for ways to keep you near me...things to buy that I can remember you with...things to do in memory of you and it seems that every single thing I do these days IS because/for you. Ya know, one thing I've realized today is that you've made me a much more passionate person. I think about what I want, and I imagine myself doing it/getting it and eventually, I will. I have so many plans for the future, which is pretty silly considering we all know how much those don't work. All this is kind of vague, but I think you know what I'm talking about. Oh about today, was that you? I seen that book called "Roses" by Leila something in the bookstore a few weeks back and today I seen it again in a lady's hand on the MAX. Is that you saying hello? :) I smiled when I seen it because it felt like you saying hello. :) Sweetie, will you come to me in my dreams tonight?? I've missed you so much and have been waiting to see you again. Mama has to sleep now, but I hope we'll see each other again soon.

Mama loves you baby girl!

Remembering 3/27/10

Each day I will be posting my updates from this time last year while we were in the NICU...just as a reminder of our time with Leila and to remember how hard she fought.

Today my family and I went to see my daughter Leila. She looked really good. It seems like everyday her skin is starting to look better and better. It doesn't look as red as it used to...seems like she's getting more color. They took all of the junk off of her so I can see her beautiful face now :) There are still tubes and everything just less tubing around her face...She is still on the ventilator. They tried to put the CPAP on her the other day but it only lasted for a few minutes until she got tired and had to be put back on the ventilator. They say they'll try again when they feel she might be able to handle it better. I hope that time is soon...but no rush Leila! ...you do everything on your own time! My mom and I brought a picture of us to put near her bassinet. Unfortunately the nurse made us put it pretty far away from the bassinet but I think she knows we're there regardless...it seems like none of the other babies in the NICU have pictures or anything near them :( Easter's coming up and my mom and I plan on decorating around her bassinet lol I think we'll be the only ones but...whatever! :D Leila will appreciate it! OH today my mom and I met the sweetest couple! Their baby Andre is my baby's neighbor! Pretty much the same thing happened to her (Vicki)...she went into pre-term labor for no apparent reason...she was only 8 weeks early though. Her baby was born at 4 lbs and I can't remember how many oz. Looking at him and then looking @ Leila he seems HUGE, but of course he's also really small too compared to the "average" baby. I mentioned the couple because I wanted you all to pray for their family as well! They are also learning to deal with their new lives and trying to cope with not being able to bring baby Andre home with them...I hope they are able to take him home sometime soon!On another note let me tell you a story!...not a good one but none the less a story I guess...today while SO and I were visiting with Leila he saw something on her face...it was almost like a scar/scab...because apparently one of the nurses was taking the tape off of her chin (from the chin strap they had on her) and since her skin is so delicate it is easy to rip/tear...WELL this woman DIDN'T take off the tape properly and basically ripped my baby's skin off!!!!!!!!!!! UGH I was SO angry I can't believe this happened and NO ONE even had the decency to give one of us a phone call...another nurse told us about it and said that nurse hasn't dealt with babies this small or this early (I can't remember which one it was) but if that's the case then WHY THE HELL IS SHE AROUND MY BABY?!!! This is NOT acceptable...I'm calling her Dr. tomorrow and letting him know how upset we are...I know it was an accident but we can't afford to have "accidents" and if there was one we should have AT LEAST been notified...my SO was SO upset :( he kept telling Leila how sorry he was and that he wouldn't let anyone hurt her again. UGH this makes me feel SO bad just talking about it...On a happier note...today while SO was visiting, the nurse told him that he could change her diaper!! :D he was too scared though...he didn't want to hurt her :( I was kind of upset but I understand...he will try next week though! BUT he was able to take her temp. and rub Aquaphor on her body to keep her moisturized...after that he said the nurse should have let him rub Aquaphor on her body first because now he feels like he can do anything! lol I took pix! it was SO adorable while he was doing it and he was talking to her about how he would do it all the time for her to make her comfortable...WELL I think that's all for today...until next time!

Take Care everyone,

Kalialani

I remember this day like it was yesterday...I'm sure I will say that about everyday I remember your days in the NICU. It's all still so fresh in my mind. The warmth of your skin, the tight grip of your tiny little fingers, your daddy's toes, all of that hair, your little whimper...it all seems so familiar. I miss you like no other, my sweet baby.

Love,

Mama

3/22/11 Happy 1st Birthday baby girl

I didn't really have time to write yesterday, but I wanted to update on Leila's 1st birthday. First of all, I can't even believe so much time has passed already...where does the time go?? The day before her birthday was worse than the actual day itself...which was weird for me. I went to work like any other day (3/21) and a simple question was asked..."how was your weekend?" I started bawling telling my boss how shitty is was. Poor him. I felt bad for making it awkward for him, but I couldn't help it. He told me I could take a minute to myself if I needed it. I definitely took advantage of that. I have yet to believe that this is truly my life. It's just a slap in the face everytime I think she should be here and she's not. Mustafa drove me to work the other day and all I could think about was the fact that Leila should be in the backseat buckled in her carseat...why isn't she then?...

On her actual birthday we went to the cemetery to visit her. I was SO happy her gravemarker was placed finally a few days before (which I forgot to post a picture of...remind me please). We stopped by Safeway to pick up some flowers, where I actually found the PERFECT dragonfly balloon. Or should I say it found me?...or like Ann says, "Leila wanted that and made you get it for her." :) I like that reason better. We all got her like 3 cards each because I just could decide on one, I swear they were all so perfect. Again, she probably wanted those cards for her birthday :) We put everything in her area and took pictures. My little sister (10 yrs old) started bawling :'( I wasn't crying at the time, but seeing her cry touched my heart and I just couldn't hold it in any longer. Oh p.s. I just wanted to give HUGE thanks to everyone that acknowledged Leila's 1st birthday and even those who didn't publicly, but thought of us on that day. I swear they made all the difference in the world. We got SO much support from all of our BLM (Leila's Aunties) and a few other people. I just can't thank you all enough. We weren't able to light sky lanterns last night like I wanted to (since it was raining), but we plan on doing that as soon as the weather allows us to.

Leila,

My sweet, beautiful, little BIG girl...I can't believe you're 1 year old already. I just know that you were thrown a HUGE party...with all your cousins up there...there is bound to be some trouble ;) Did you read Tutu's poem she wrote you for your birthday? Doesn't she always know the words to say? She truly has a gift, I'll be sure to post that soon so everyone can see how much you're loved and remembered. :) I keep wondering how you look now. Are you walking yet? Did your hair get long and curly yet like I imagined? Did your Tutu Nui throw you a party up there? She's always the life of the party :) I hope my Tutu Nui danced hula for your party. She couldn't wait to be up there to "dance with the girls" again. I miss you sweetie. You mean everything to me and I want you to always know that. Each year when it seems others might have forgotten your special days, just know that your mama will always remember and celebrate your special days...and SO many other people will for that matter. You've touched SO many lives in your short time here and even after you went to heaven. I'm still getting messages from people that have followed your story from the beginning and continue to think of you often. Thank you "N" who messaged me today. You truly made my day with that message. I promise I didn't think you were some weirdo lol :) Mama loves you Leila and I hope you had the BEST birthday ever. I can't wait to celebrate WITH you someday. Miss you baby girl!

Love,
Mama

Sad.

Feeling sad tonight. Another dear BLM lost her rainbow :( Life just isn't fair...I don't care what anyone says. Thinking of Little Bee & his/her big sister, always and forever.

Lost

Today was...THE worst day ever...ok not ever (obviously) but ever after Leila died? I really don't know, all I know is that I feel so hopelessly hopeless today, if that's even possible. I don't know where this overwhelming feeling of sadness came from, but it came on FULL force today. We had a meeting this morning at work. At the end of the meeting, my co-worker (19 years old) told everyone that his girlfriend is pregnant (17 weeks). I was shocked. I don't even know the kid that well, but I guess it just caught me completely off guard. This guy doesn't know about Leila because he started working after I came back to work. Needless to say (or maybe not) that I cried. I couldn't help it. Most of my other co-workers know what happened to us, but when everyone was telling him things like how exciting, I'm so happy for you, I hope it's a girl etc. I lost it. My co-worker/friend looked at me and I turned around in my chair so no one could see the immediate tears that rolled down my cheeks. I had to leave. I walked out and ran to the bathroom, not even sure if anyone really noticed. My friend/co-worker ran to the bathroom to check up on me. She understood why I felt how I felt and told me I should go home. I left. I called my mom and broke down like never before. I didn't know who to call, I felt like I was having a panic attack. This has never really happened to me before...not like this at least. I asked my mom how she did it. HOW she "coped" with my Tutu's death. I know it's completely different, but I just needed something, anything to calm me down at the moment...to bring me back from this. I needed her to tell me what to do. She didn't know. She knows it's completely different than her own grief and she knows there's nothing she can do but be there for me. I just don't know how to deal with this. I don't know how to not freak out over certain triggers. I don't know how to keep my emotions in check. I just have to go with the flow I suppose, but it doesn't help my day to day life. I had to leave work early and not go to my internship. My supervisor at March for Babies understood how I felt (as much as she possibly could) and told me it was completely OK that I didn't come to the office today. My mom suggested I go to counseling again. She thinks I need it. She didn't tell me in an offensive way, she just sounded really worried. She cried as I yelled at her, "I don't know how to deal with this, I hate my life." I feel like shit, to say the least. I just don't know...how to live anymore. I'm lost.

Ideas

Last night I cried ( I think) the hardest I've ever cried before. Nothing triggered it...or maybe it was the fact that yesterday was when we found out she was a girl. Maybe it just hit me like a ton of bricks at the realization that it's almost been a year since I gave birth to her...I don't know. All I know is that yesterday was one of the most shittiest (if that's even a word) days ever.

On the other hand, there is a plan in the works...I plan on starting my own online store for everything crochet. Mostly hats/baby booties for now, but I'll add to the store as soon as I get new patterns. I learned how to crochet when I was in middle school, but really didn't expand on anything I learned. Now I've learned a lot more things about crochet and it's been so much fun trying new patterns. Here is a preview of what I made (for those of who haven't already seen it on facebook)...


I can't wait to get the store open...but I have one problem right now. I don't have a name for it. I wanted to buy the domain and get it up A.S.A.P. ...Do you all have any suggestions? I want a "cutesy" name if that makes any sense :) Ann suggested Cookie Monster Crochet (which I love!) for reasons associated with Leila being a cookie monster...but I can't use it because of trademark issues. That being said, I need something original. I want it to have something to do with Leila for sure, because she was the one that got me into crochet again. Leila's NICU neighbor...his mom...wanted me to join her in making hats for the NICU babies where our babies stayed. I said OF COURSE! :) After making my first baby hat, I realized that I absolutely LOVE to crochet and I don't know why I ever gave it up. Now I want to continue crocheting and I feel like opening up a shop would be so much fun. If you all have any suggestions, feel free to leave a comment! Thanks ladies (and possibly gentlemen?) :)

My girl

Long time no write :/

I've had tons to say, just no time to write. It's February already...WOW. So many of my nieces' and nephews' birthdays are this month...on top of Leila's birthday in March. Blah! I can't believe it's almost here. Today I miss her SO much! Not that I don't miss her everyday, but you get my drift...I was looking through all of our pictures from the NICU wishing I had more. I should have taken more. There are some people whose children were with them fewer days than Leila and they have TONS more pictures than I do...why didn't I think to take more? I should have taken more...it's just one of those days :/

Today, February 16th makes it one year since we found out Leila was a girl. It was one of the happiest days of my life. I just miss that happy feeling, ya know? ...I remember sitting in the room with 8 people (other than myself) as well as my other sister on the phone. The ultrasound tech asked if we wanted to know the gender. We said, "OF COURSE," and thought why the hell would we bring all these people if we didn't want to know? lol She showed us the goodies and asked us what we thought it was. With all my "research" on ultrasound pics, I knew the "hamburger" meant a girl :) We all said, "IT'S A GIRL!" I cried, my mom cried...my best friend took tons of pictures and sent them to everyone we knew before I even got the chance. I know I've told this story before, but I feel like I have to relive that happy time in my life once more. I left the appointment in awe. Everyone else started talking about other things and I still couldn't stop thinking about her. I couldn't believe it. I couldn't stop smiling, I was so proud of my baby girl. We went to Costco after the appointment. I looked in the diaper aisle cheesing so hard thinking we'd be buying diapers pretty soon. I remember every single thing about that day. I remember taking a picture of Mustafa looking like the proud daddy that he is. We were actually parents. I took a picture of my little sisters thinking they are going to be AUNTIES now...WOW.

Now everything is as it was before. I'm no longer a parent...they're no longer aunties (to a living niece anyways). I just need to cry right now.

Leila,

I can't believe our special days are passing us by. It's been a year since we found out you were a girl and soon it will be your 1st birthday, then your first holiday (Easter) and the list goes on...I don't know how I've "lived" this long without you. I can't believe it's back to business as usual and I have to continue to go to school, work, etc. while you lay in the ground. I can't wrap my head around it...still. I just miss you. I miss you. I miss you. I can't say it enough.......

Mommy loves you Leila.

March for Babies breakfast

I haven't written here in a REALLY long time...too long...so here goes nothin'.

I'm pretty sure I told you all about my internship with March of Dimes...well yesterday there was a family breakfast and so I went. I was extremely nervous because I knew I'd be exposed to pregnant bellies galore and babies who had survived the NICU. In fact there was a pregnant woman sitting right next to me. This was her first. She was talking about how scary it is when her little boy didn't move around for a while. I put my head down and tried to ignore it. It hurt. She had never gone through a loss. She told me she joined March for Babies through her job and has been walking ever since. I thought that was sweet of her though. Another lady came and sat next to me...I'm glad she did. She seemed much more friendly and willing to hold a conversation with me. She asked why I started walking and I told her I do it for my daughter. I gave her the short version of our story and she told me how sorry she was. She then told me, "well, I can empathize." My head perked up and I was eager to hear her story. Finally, someone associated with this organization that I can talk to and be open with. Her daughter's name is Audrie. She is her second child and only daughter. She was perfectly healthy and born at 38 weeks. Somehow the cord ripped about 10 minutes before she was born and deprived her of blood flow which in turn deprived her of oxygen. She was almost 8 pounds...perfectly healthy :( I can't imagine. She was SO close and that damn cord ripped. :'( I cried. We shared a bond at that moment. She was so kind and willing to listen. She was eager to show me the picture of her daughter and I was eager to see. I know the feeling of wanting to share my daughter with the world. Audrie was absolutely beautiful. It's been almost 2 years since she died, so D (we'll call her) is further along in her grief, "healing", "coping"...whatever you want to call it. We talked for the longest time about all the stupid shit people say. We had a good laugh about it. There were a few key speakers talking about the research they've done, as well as a father who told the story of two of his sons survival. Me and D cried after hearing that story too...you'd think they'd provide boxes of kleenex for us...but nope. The table next to us sat a woman and her daughter who survived prematurity. D looked at me and said, "it's bitter sweet, huh?" I cried and laughed at the same time. She knew exactly what I was thinking and I'm sure the whole morning we both had the same thoughts running through our heads. Needless to say we made sure to get each other's contact information before leaving. She told me I could call her at any time if I ever need/want to talk, or anything. I'm so happy I met her. She also invited me to come to grief counseling. Her husband and her will be going, since February is such a hard month for them...Audrie's birthday. She would have been 2 years old this month. :'( Please pray for another year to be gentle on them.

I'm actually excited for March for Babies this year. D gave me the number to a place where she has hook up for team t-shirts. I'm going to create a new design for this year's shirts, so that will be fun. This time Leila's picture will be on those. Oh that reminds me, yesterday Mustafa came home with part of my Valentine's day present. It was a sweatshirt that he got custom made to say Team Leila. You know those stands in the middle of the mall that spray paint designs on them? Well that's where he got it done and it's so cute! :) He even put a little dragonfly on the back. I'll add pictures later when I get home.

Well I'm going to break these posts up since I don't want them to be completely all over the place.

Thinking of all of you mamas!

Expert?

Yesterday I found out that Leila's little cousin passed away. To some it would just be a fetus or a ball of cells...but to me and many others it was a baby. It was an ectopic pregnancy. My cousin's girlfriend lost a fallopian tube with the baby. While I haven't been through this myself, I can only imagine her pain from what I know about my own and so many of my friends'. I called my Grammie to let her know I was thinking of her too. This was the second great-grandbaby she lost within such a short period of time. She was devastated to say the least and I was hurt to hear of another baby gone too soon. I guess it just brought back a lot of my own early feelings of grief. Grammie and I both agreed I should reach out to my cousin's girlfriend "D". Maybe I could be a shoulder to cry on...since I am the "expert" on grief, right? Ask me anything about grief: the feelings us grieving parents encounter, a special way to remember our children, how to throw a birthday party for a dead child/ren (sorry if this is too blunt), what an angelversary is etc. Ask me about raising babies and I couldn't tell you a damn thing...not from a mother's point of view anyways. I'm not a parenting mother...only the mother of an "angel". The fact of the matter is I'm not an expert. I'm not an expert when it comes to anything actually. I still don't know how to live without Leila. I still don't know how to be positive about this whole thing. I see so many people with such positive comments about what they've taken from this experience and yes I can come up with tons of positive things. So many blessings came from knowing Leila...but when it comes to my daily life it seems like I come up with nothing. All I do is complain...I realize that. I'm sure other people have realized that too. I am gratful, I truly am...it's just extreeeemely hard to be positive when I feel like I've lost so much of myself. Leila was/IS my world and I feel like that's all gone now. It's like I'm in a constant battle with myself telling myself I've lost...no I've gained...I don't know. Who knows if any of this even makes sense but I just felt like I had to get it out. I just miss her so much it's sometimes unbearable. I wish I was an expert on being a parent instead.

Leila,

We haven't talked in a while...not on here at least. I've missed you SO much lately. I feel like time is flying and before we know it your first birthday will be here. I can't even believe that. It's just too surreal. I've had plans for your first birthday for a while now and I'm excited to see how everything turns out. It brings me joy to plan something for you or in memory of you. I've found that for now projects are what keeps me happy. I feel like I'm meant for something that will change people's lives though I'm not sure what yet. I miss you so much baby girl. Simba has been keeping me TONS busy lately and I'm SO grateful for him. He has SO much energy I'm sure you two would love each other. I love you and miss you my child.

Love,
Mama