3/27/10
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
3/29/10
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.
OH so I wanted to mention something to you guys! I don't know if you guys have heard about the March of Dimes, March for Babies but it's a 6.2 mile walk (in my area at least) that raises money that supports programs in your community that help women like me have healthy, full-term pregancies...It also uses that money towards research in order to "find answers to the problems that threaten our babies". (you guys are aware of the walk for Breast Cancer and the Aids walk and things like that...it's JUST like that but instead for preemie babies and their families) I am participating in this walk and have started my own team..."Team Leila" we're calling it. I live in Portland, Oregon so it will take place on April 24th (Saturday) so if ANY of you live in this area or know anyone that does, be sure to let them know and you/they can join my team to help support Leila and all the other preemie babies and their families :) I would GREATLY appreciate you all spreading the word if you know anyone in this area...and if you don't, spread the word anyways and look for a walk in your area! You can put in your zip code and find the nearest one to you.
Here is the link to their website if you want to look for one in your area
http://marchforbabies.org/
and Here is OUR link to "Team Leila"....here you can join my team and walk with us on April 24th or make donations to show your support. Although I don't expect any monetary support from anyone it would definitely help our baby as well as babies all across the nation who are born premature.
Thank you guys for reading!
~Kalialani
3/31/10 12am
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
3/31/10 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!
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
4/4/10
HAPPY EASTER everyone!! Today is my baby's first holiday :) We brought her a bunny rabbit in a basket this morning and cards...
GUESS WHAT! Leila is on CPAP today :) I came in there this morning and found her on CPAP :) I pray that she's able to continue on it and stay strong like she has been these past 2 weeks. By the way she will be 2 weeks old tomorrow....her next brain ultrasound is tomorrow...I'm practicing my look of surprise when they tell me her grade II brain hemorrhage is completely gone and the grade IV is significantly reduced...god willing. They measured her head and it's been the same size for 3 days and since she first came to the NICU it's only increased a tiny bit which I'm thinking is just her normal head growth.
I gave Leila a sponge bath today :) She got a little worked up because we were moving her around a lot but other than that it went well. My favorite Nurse Kristin has been there for the past 5 days and she always tries to keep me involved, which I love! I wish she was there 24/7 but she does need her days off too :/ lol oh well.
They've changed her feedings so that it's constant now...not just every 2 hours. So she gets 3mL every hour. She has a little reflux but they have her elevated to help with that. She's back on insulin, but again that will fluctuate throughout her stay here. They still give her caffeine to remind her to breathe...other than that I think that's all that's changed.
Since her brain ultrasound is tomorrow I will most likely do another update when I find out what's going on. Please everyone continue to pray for her!
P.S. remember baby Andrew who I told you guys about? Well they've moved him to Level 2 NICU so he's doing a lot better. Vicki is able to breast-feed him now and hold him. I'm really happy for her and I can't wait 'til I'm able to do that with Leila.
Take Care Everyone!
4/6/10
Dr. says the last ultrasound shows no indication of the hemorrhages getting any worse...for now. It's possible that it could worsen, but it hasn't as of that ultrasound.
They've increased feedings so much that they won't need that PICC line anymore. (Thank God) As long as they can get her off the insulin then they can take the line out of her belly button, and then...I CAN HOLD HER! :D
Her length is still the same, she's gained a little bit of weight...I guess it's a LOT of weight for her :) So she weighed 1lb 7oz when she was born then lost quite a bit of weight and weighed in @ 1lb 4 oz, now she's gained 40 grams and weighs 1lb 4 and a half oz...so she's slowly creeping up there :)
Yesterday the respiratory therapist was there to change her CPAP and get her a fresh one and she just rips off everything and isn't even delicate with her :/ . Maybe it's because she's so used to doing it on all the babies that she just doesn't take every situation into consideration or maybe it's just me being too sensitive, but it hurt my feelings when I saw her taking everything off and Leila looking so uncomfortable and I could tell she wanted to cry but couldn't :(. She did make a noise however, and I think that's the most noise I've ever heard her make...AWW it made me feel SO bad.
Anyways when I was leaving last night I was touching her hand and she held on to my finger and I told SO after she lets my hand go then we'll go home. She held on to it for longer than she ever has, it was SO adorable I didn't want her to let go. I would stay there all night just so she could hold my hand...well, finger lol
Other than all that, there's nothing else to really report! Which is good!...No news is good news :). She has been doing really well for a baby her size. OH, by the way I LOVED her nurse yesterday (Julie) She's SO sweet and every time she comes around Leila she makes me happy so I can imagine she makes Leila happy too. I REALLY hope she will be part of her rotation with the other 3 nurses I like...So far I've found 4 (for day shift) that I like for Leila, but night shift I've found 0! Seems like they put all the "less favorable" nurses on night shift, but hopefully I'll find someone for her soon though.
My life has been pretty hectic. It's EXTREMELY hard to keep up with school work...I just missed an assignment that was due last night :( so I'm not really off to a good start. Somehow I need to find some balance and organization so I can keep on task. WISH ME LUCK!
Well I think that's all for now. I'll continue to keep you guys updated!
Again, Thank you all for your thoughts and prayers!
Take Care,
Kalialani
4/7/10
BEST DAY OF MY LIFE TODAY!!!...
This morning I called the NICU to check on Leila...she was taken off insulin and the line in her belly button was taken out...guess what that means!! YES, I got to hold her!! She laid there on my chest for about an hour and it was THE best feeling in the world!! I never knew I could love someone so much! I was bawling when they put her in my arms! Every time I even think about it I have this huge smile on my face! Me and SO were there and we also heard her cry today! Before, we heard a whimper from her (like a little puppy dog) and we thought THAT was cute, then today we actually heard her cry! I mean of course it wasn't that loud because she's so little, but it was definitely a cry this time! SO was REALLY happy to hear it! He couldn't even believe it, he said it just hit him that he was a daddy lol
I will remember this day FOREVER and tell Leila all about it when she's older :D
P.S. I think everyone praying for her is working, keep it comin! :D THANK YOU ALL AGAIN!
Take Care Everyone!
Kalialani
4/9/10
Guess the honeymoon stage is over…
Yesterday started out a great day…I got to hold Leila for the second time for about three hours! I was SO happy I thought I’d stay in the NICU all day everyday so that I could hold her all the time now.
I had to leave her to attend the NICU parent pizza night (which was cancelled the last time). It was nice meeting other families that were in a similar situation that I was in. I got to talk with a lot of them and they were amazed by Leila’s story. They said they would pray for her. I was very thankful for that. Pizza night was over so I thought I’d go back to the NICU to spend a little time with Leila before I go home for the night. Nurse Susan was on duty last night and told me that she had noticed something concerning. Leila’s stomach was protruding more now than ever. It was also very hard. I also noticed she has some discoloring in her feet. They were turning purple. Susan thought it was from the bandages being too tight, so she loosened them up. They were still purple. She called the Nurse Practitioner over to take a look at Leila. The Nurse Practitioner ordered an x-ray to see what was going on. She looked at the results and came back to tell me that she was very concerned with what she found, so she called the Dr. to come in. My step-dad told my mom she should come right away. My mom and Auntie came to the hospital to be with me. We weren’t quite sure what was going on at that point but it was obviously serious. The Dr. sat us in a room and explained her findings. Leila has what is called Necrotizing Enterocolitis (NEC)…it’s the dying of the intestines. Dr. told us there are different severities of it and so far it looked like hers wasn’t quite as severe as they had initially thought, so they wouldn’t need to do surgery on her. They would immediately take her off feedings (to give her intestines a rest and hopefully they’d be able to heal) and start her on antibiotics so that she would have less of a risk for infection. I asked the Charge Nurse if they could give me a room in the hospital to stay in since my daughter was in such bad condition, she said of course so we got in a room. I finally went to bed at 2:30am because I could no longer keep my head up but I told Susan I’d be back around 5am to pump again.
I get a phone call at 5:30am and am told to come to the NICU because it looks like Leila’s condition is worsening. When I get there her stomach is completely purple and protruding and her legs are also purple. They did a second x-ray to check on the progress and it now looks like her intestines are completely filled with air. They could burst at any minute. They told me I should spend all the time I can with her right now before it worsens. I step outside for a minute to call my mom and SO. They both come down right away and we all realize it’s not good news and that she might not make it. The Dr. who usually works on Leila is on his way down to talk to us. He finally arrived and wanted to show us the x-ray. All we can see are her inflamed intestines and the tears streamed down my face. I knew she wouldn’t recover from this. She’s too sick. We ask if there’s any more we can do to help her and the Dr. insists there’s nothing we can do. They’ve done everything to try and save her, this is just something that wasn’t expected and it came pretty quickly. He advised us to just spend all the time we are given to be with Leila. She could die any minute. The ventilator rather than the CPAP is now breathing for her. They gave her morphine to stop the pain. SO and I decided we wanted to be alone with her during her last moments, rather than having our families there with us. I let SO hold her first since he’d never held her before. Her heart rate started descending so I wanted to her. We told them to turn off her heart rate machine so we wouldn’t be so worried about what the machine says and focus on her. There she died in my arms at 11:48am this morning. I prayed with her and told her that we would see her again someday and that we would always remember her and how much she changed our lives. She looked so peaceful and that’s how we wanted it. We gave her a chance to fight and she did for quite a while but today was her day to go home. I know that my Tutu (grandma) was there to greet her at the gates of heaven.
SO being Muslim wanted to perform his cultural duties to her by washing her body and wrapping her in a white cotton blanket. We wanted to get her buried right away as his culture desires it, but were unable to get the funeral home to make arrangements that quickly. They said that if I needed to I could take her home one night and the earliest they could do it was tomorrow morning. I insisted that I take her home because I can’t leave my daughter with some strangers. An outsider looking in might think this is wrong or that it’s creepy, but you never know what you’d do until you’re put in that situation. For me, I decided leaving Leila with strangers was not an option. Either she gets buried today or I take her home with me until she can be buried. As I write this last entry Leila lays in my arms. Her body is with me but her spirit is not. I know that she is in a better place but it hurts my heart that she is no longer here with us. I miss her more than anyone can imagine. Although it’s very hard for us to deal with, we believe that her passing was as peaceful as can be and we wouldn’t have it any other way. She is no longer suffering…I love you baby girl and we will keep you in our hearts forever. He U’i Lani ‘Oe (You are a heavenly treasure)
~Kalialani
