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.