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!