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