Murphy's Effing Law

Grief is such a screwed up process. That's the really crazy thing - we thought we were riding a roller coaster in the NICU. That was a kiddie ride compared to this. One minute I can be laughing at something lets say my dog is doing and the next I'm sobbing my heart out.

That's pretty much what happened this morning. I was sitting in bed, watching the Office for the millionth time since that seems to be all I want to do lately, when Dan came in. He had just gotten off the phone with the mortuary and there was a little problem. Last week we had planned to gather all of the stuff we wanted with her when she was cremated and picked out a little outfit for her to wear along with stuffed animals and letters we wanted with her. We were planning on dropping all of this stuff off today along with the urn and memorial necklace we had ordered. Story of my life, the plans did not fall into place and the mortuary had "accidentally" already performed the cremation. I lost it. It was just too much. After everything we have been through and all the loss of control we have felt over the last two months, this was just the last fucking straw. We can't even control how we would like her buried. And now it's too late. It's already done. Can't go back in time on this one. It's final. It tears me up inside. So long story short, Dan and I have decided to bring everything to the burial and drop it in the grave. It's not ideal but we don't have any other choice.

The obituary ran in the paper today too. That's another surreal experience. Writing an obituary for your child is one thing but seeing it in print is another. Here is a link, if anyone is interested in reading it. http://www.legacy.com/obituaries/sanluisobispo/obituary.aspx?n=naya-jane-manalo&pid=153863242

I just want to take this opportunity to, again, thank everyone for their following and support during this awful journey. It is all appreciated. Our baby was a beautiful miracle and it is truly amazing how much love she has given us in her short little life.

Love to you all
Jamie

Haunted

Today has been rougher to me than the past few. After I wrote last night, Dan and I went outside to watch the lightening storm - a rare occurrence in our neck of the woods.We both sat there and cried as we watched the sky light up every 15 seconds or so while the wind chime played its delicate music. We went to bed soon after and I had a dream about her. I should probably explain the significance of this, to me. Every time someone close to me has passed away, I usually have a dream about them within a month or so of their passing. They know they have died in the dream and we talk about it, cry, hug and say goodbye. This one was a little different. I dreamt that the hospital called us and said that they made a mistake. That she hadn't really died and that we should come right away to get her. We came and I held her while Dan removed some of the lines that she had in her leg and chest. She opened her eyes and looked at me, smiled and said "hi mommy." It was strange because in the dream, it didn't seem like she knew she was dead. She acted like it was all a mistake and she was alive and better, older even. I woke up in tears and have not really recovered all day.

I think what haunts me the most is the image of her on the day she died. I don't even really want to describe how her body looked, with the grotesque swelling and all of the tubes and wires poking out of her poor, tiny frame. I want to block out the image of us being handed her to hold while she passed. How she gave a little quiver and her eyelids flickered as she took her last breath. How I was screaming and crying from the emotional pain of that moment. It scares me that I am never, ever going to emotionally recover from this. I know that I have to go through this now but I will ever be able to go a whole day without being unbearably sad? Will I ever be able to experience happiness again? Will I ever feel like rejoining the world again? What our lives have become is simply terrifying to me. I loved my life and I know I will never have it back but will my new normal ever be enough?

Surreal

The title pretty much sums up this experience. Surreal. I still feel like I am in a daze and that this can't possibly be happening to me. Maybe it's the whole denial part of the grieving process but I just can't comprehend it. Sometimes, I feel like she's still inside of me, moving around, kicking me in the ribs and just there. It's possibly because she did so much damage in there before she was born (my ribs are still sore and actual kicked out my xiphoid process in utereo) but I feel like it's more psychological. Or maybe I just want to feel a connection to her. Who knows.

Today, Dan and I spent a lot of time outside. He worked in our yard, planting trumpet vines and removing this ugly tree while I watched. We noticed that a hummingbird has been hanging around the trumpet vines lately even though we have never seen one in our yard before. We both thought the same thing - maybe it's her. We went over to my dad's house for dinner and my stepmom told me that earlier in the week, a hummingbird got into their house. On two separate days. Maybe it sounds corny or again, maybe I am just looking for anything, but I want to believe it's her. I could see her being a hummingbird. Small, beautiful and graceful just like she would have been as a girl. I will take it.

We also put the finishing touches on her burial and memorial service today and wrote her obituary. We are having a private burial  on Friday, September 30th and a public memorial on October 1st. The memorial service will be held at the Dinosaur Caves Park Amphitheatre in Shell Beach, CA at 11am and everyone is welcome. It's going to be a very simple service but hopefully, quite beautiful. Here is a link to the park's website for anyone who is interested. http://www.pismobeach.org/index.aspx?nid=288 The picture that is shown on this page is the park itself and the amphitheatre is the concrete circular thing on the left hand side. It overlooks the cliffs of Shell Beach and is quite beautiful. Naya loved the ocean. She spent her first days after being conceived swimming with me in the waters of the Caribbean outside of Panama so I know she will approve.

Thanks again everyone for your support and thoughts. We love you all.

Anger

Warning: This blog may contain adult language and material. Please be advised.

Welcome to the five stages of grief. At least that's what the counselor told me that I visited today. (She actually didn't put it like that. She was very nice, understanding and helpful.) Today, I am going to discuss anger and it is a directed rant towards the hospital we delivered in and our pediatrician. Over these past two months, we have obviously been in contact with a lot of different people, many of them being medical professionals. They have all stated the same thing - this shouldn't have happened. Naya should have never been released from the hospital in the first place without pooping. The pediatrician should have never given them the green light to release her. She displayed all the signs of sepsis the first day she was born. They should have caught it. This should have been prevented.

I know being angry at the situation does not bring Naya back. I know that the what ifs are normal and a terrible part of the grieving process. But that doesn't mean that I can prevent them from happening. Someone should have done their damn job instead of dismissing her (and me) for being lazy. Someone should have listened to us. Should have cared. That was why I was so angry when I got the bill from the stupid peds office. BTW, they called me yesterday. I didn't answer - didn't recognize the number. I looked it up afterwards. They didn't even leave a message. Probably realized who it was and didn't know what to say. What do you say? "Sorry I fucked up and killed your kid? You still need to pay your bill." Assholes.

That's another "fun" part of this. The bills (and late notices, for that matter) are starting to roll in. We haven't gotten the big one from CHLA yet but I am sure that's going to be a doozy. $225,000 just for the hospital portion when she spent those 11 days in Santa Barbara alone. That doesn't include the doctors fees, pharmacy bills, x-rays, etc. We've been told not to think about that yet but how can we not? She spent 5 weeks at CHLA. I see a price tag in the millions in our future. So now, not only did we lose our daughter, but now we are going to lose everything. How the hell is anyone expected to pay for a bill that size? I'm sorry but I wasn't born with a trust fund. I don't play a professional sport and I sure as hell didn't win the lotto lately. So how does that work? I don't want to get political on here because that is not what this blog is about but this is what is fucked up about our health care system. The number one reason people declare bankruptcy in the United States is due to unforeseen medical bills. Guess who is probably going to be joining that statistic?! But I won't worry about that right now. Just let those bills and late notices pile up on our kitchen counter while I pick out cremation containers and burial plots. Awesome.

I apologize for the rant and hope I didn't offend anyone. Just needed an outlet for my anger. Thanks for letting me rant.

I meant to write last night but was in absolutely no condition to put together a coherent thought. Yesterday, we attended a fundraiser for Naya that was put together by some wonderful friends and family. We weren't sure if we were going to attend until the last minute or so but figured that it was the best way to get over seeing people we know. That's one really crappy part of this - rejoining society when we know that everyone is looking at us and feeling sorry for us. Not that I can blame them, I feel sorry for us. It's just hard because I know no one knows what to say to us. There really is nothing to say. We lost our child. It's the worst thing that can ever possibly happen to someone. I know that. They know that. It sucks.

But we went to get it over with. And it was a beautiful event that people worked really hard to put together for us. The outpouring of support was incredible. And surreal. I'm sure we looked like zombies but we really tried hard to pull it together and even had a bit of fun. We have such a wonderful group of family, friends and community and we are so lucky in that aspect. It doesn't take the pain away but it did help.

Afterward, Lindsay and Phil came over and made us mommy soup and hung out. I drank entirely too much. I know that is not the way to deal with our problems but last night I didn't care. Lindsay and I passed out on my bed just holding each other. It helped Linds - it really did but I was paying for it this morning. Worse than the ever famous bacardi night, that's for sure. I spent the entirety of the day in my bed again. I'm really going to have to work on that. I made an appointment today to see a counselor on Wednesday. I just wish I could speed up the healing process. I hate being like this. I hate being so sad and depressed. I hate feeling like the little things are overwhelming. Like doing laundry or cleaning my kitchen is akin to climbing Everest or something. But it is. That's not going to change yet.

Both Dan and I are taking some time off work for the time being. I don't know how we are going to afford it but I can't go there yet. We have started making some arrangements as well. The funeral home is going down to pick up her body tomorrow and we are going to meet with the cemetery to discuss the burial. We have decided to do a private burial and then hold a memorial service the next day in Shell Beach. I like the idea of not having something in a funeral home. Too sad and I don't want it to be all about death. I want it to be about remembering - not only her but also about remembering to cherish all the people we love. After this is all over, we have been talking about getting away somewhere for a couple of days. Our lives have been so stressful for the past two months that we are both going crazy. I've heard that being in a NICU is as stressful as being in a war. Lots of people develop disorders. I hope it's not going to come to that with us but who knows. I swear I can still hear the monitors beeping, even now at home. The images are awful to deal with too. I'm trying not to think about them but you can't help it. My mind just won't turn off.

It's strange being home. The moment we walked in the door on Thursday was terrible. It almost made me wish that I had never been able to bring her home. All of those memories are here and came flooding back to me. We had to take her to the emergency room so fast that day and had expected to come home right away so everything was still laying out how we left it. Luckily, family and friends had cleaned up around our house and put all of Naya's things into her room and shut the door. I haven't brought myself to go in there yet. I walk by her room and can't help but cry. It's too painful. Ty asked me last night if it was okay if he went in there and read her stories from her bookshelf. I told him that if that makes him feel better, he's more than welcome to but I can't go in there. I will go in there someday. I want to sit in her chair and rock and cry. Not yet but I will get there.

I've spent most of my days so far lying on my bed. That is also painful, as Naya spent most of her short time with us in our room, on our bed or in her bassinet. Sometimes I feel her there. It makes me cry, picturing her, lying on my chest sleeping. I know now that the ecoli was probably cursing through her bloodstream during this time. I just hope she wasn't in too much pain. I keep going over everything in my mind and wishing I had handled things differently. I wish I had acted on my gut instinct that something was wrong. I wish I had insisted to her stupid pediatrician that no, she wasn't just being "lazy" because I had gotten an epidural and forced them to run further tests. Don't judge me for this but we got a bill from the pediatrician's office today. I opened it, ripped off the bill form and wrote "please stuff this up your ass. Thanks! :)" and put it in the mail. I know it was childish but, sadly, it helped. Maybe it will make them think about it the next time. It was a good direction of my anger and grief for the time being. So are bloody marys.

Our dog also seems to be helpful to us. I think he can sense our sadness and grief. That was one beautiful part of walking into our house. My dog had already been picked up and was sitting in his spot by the front window. He saw me, did a double take, and jumped up with an excited look on his face. When I walked in, he ran to me and started giving me kisses with his little curly tail wagging away. He's always been clingy (he's a pug - we have always called him "the velcro dog") but he's even more so now. It's amazing how animals can make you feel better. Their complete, unconditional love is remarkable.

I've been sitting outside a lot for the past two days. Dan set up our outside area awhile ago with my hammock from Nicaragua and plants and wind chimes and I find it very peaceful. There is a wind chime that we got as a wedding present hanging next to the window of Naya's room. As I was sitting there, the wind was softly blowing and making the most beautiful melodic song. It may be corny but I believe it was her - playing me music while I cried. I miss you so much Naya. I wish you were here with me. I love you.

Thank You

Today has been a whirlwind for me. My emotions are all over the place and I really don't know how to deal with all of it. So I am going to write. Maybe not every night, or maybe multiple times. I don't know. Writing has always been very cathartic for me so I am going to continue doing this, despite the fact that she's gone. My fingers just hurt typing that. It's still so surreal. I can't go 2 minutes without thinking about her. Or crying. Or clutching my head in pain and confusion and disbelief. Some people may criticize me for displaying my pain in a public arena but I don't care. Like I said, it's cathartic.

But that's not what this post is about today. This post is to thank everyone for your thoughts and prayers and condolences. It may not seem like a lot but Dan and I have read every single message sent to us. We may not respond, but believe me, we have noticed. You can look at your stats on page views on blogger and it had 13,000 hits last night. Crazy. Thank you for all of your comments on here, on Facebook, via text, on the radio (thanks Dave, we were listening and it was beautiful) and even on babycenter.com (Here's a link - http://community.babycenter.com/post/a29408939/in_loving_memory_of_naya-?cpg=15&pd=-1) Like I said, it may not seem like a lot but we are reading it. And appreciate it. It warms my heart to know that Naya has touched so many people in her short little life. She had caused people to rethink their lives and hold their families and friends closer. She has caused people to come together in love rather than hate. That's more than most people accomplish in a lifetime. If her story helps even one person prevent this from happening to their baby, then it was worth sharing it. It may not cure my heartache but it helps. Naya has taught me patience and that I have a choice in life. I can choose to be sad and depressed (which I am, don't get me wrong. This is going to be a loongggg healing process) but I can also choose to go on and never take life for granted. To kiss my husband and son as much as I can and tell them how much I love them. To be thankful for the wonderful people there are in this world despite all of the hardships we face. It may not seem like it but we are going to get through this. For Naya.

Thank you. We love you all.

i carry your heart

i carry your heart with me

by ee cummings 

 

i carry your heart with me(i carry it in

my heart)i am never without it(anywhere

i go you go,my dear;and whatever is done

by only me is your doing,my darling)

                                                      i fear

no fate(for you are my fate,my sweet)i want

no world(for beautiful you are my world,my true)

and it’s you are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life;which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

 

In loving memory of Naya Jane Manalo. July 24, 2011 - September 14, 2011

Elephants

This is a hard one to write. Naya has had a pretty terrible day. Her lungs are just so bad. That's really it. They are bad. Horrible. Probably unfixable. It pains me to even type that. I know that we have really tried to stay positive during this whole thing and are still trying but it's hard to do so when that giant elephant in the room keeps punching you in the face. Her lungs are just not healing themselves. She developed another pneumothoryx today. She already has two chest tubes and we are not going to stick another one in her. Therefore, we need to hope and pray that one of these two chest tubes can find the air that is stuck in her chest and get it out. Kolette and Tara (and earlier today, Brooke and Lisa) have all tried to position her to do so. It's sort of working right now but for how long? How much more of this can her poor little body take? How can it possibly break out of this nasty, vicious cycle? I want to believe that she can. That her will to survive will be able to persevere. But it's hard in light of all the concrete evidence. That nasty elephant in the room keeps sticking it's fat ass in our faces. I have to force my fingers to type this but I honestly don't know if she is going to make it through the night. I want her to. I would give anything to switch places with her right now. Let her live a life that doesn't involve tubes and ventilators and drugs, even for a second. But I can't - that's the reality. I can't do anything. I can sit her and watch her sats go up or down and try to will them to move in the direction I want but that's it. I can watch while our wonderful nurses try to position my baby in a position that might save her life but I can't even help them. I can't hold her. I can't even cry because I'm so exhausted and emotionally drained. I can't do anything but pray that I'm not sitting here, watching her die.

Another Lonely Day, hey hey

(Big Sigh). Another day. Naya had another stable day.

The good:
BP has remained pretty nice and pressers are still (essentially) off. Heart rate is good. Saturations have been decent/good. She was also a little more active today - bubbles, slight hand and feet movements, taking some breaths of her own, sucking on the tubing. I like seeing that she still has some of the natural reflexes that she was born with. Comforting in a way.
The bad:
Her lungs are still awful. No more pneumos but more cloudy on today's xrays. If someone could please invent a magic wand to wave over her lungs and get them better, I would really appreciate it. Her kidneys are also still pretty bad today. Urine output has been way down and they can't give her anymore diuretics really because they will do harm to her kidneys. It's such a delicate balancing act and a middle ground is soooooooooooo hard to reach. Again, it's all a cycle and that cycle is so freaking terrifying. It's so frustrating to not be able to do anything about it.

Dan wasn't feeling to great today, so I spent the whole day at the hospital by myself. It's a good thing Brooke was here - we kept ourselves entertained. I hope he starts feeling better tomorrow because he's desperate to see her but knows he can't be here while he's sick. I feel great but drank a ton of emergenC today just in case. He also slept in a separate bed last night so he wouldn't get me sick. It's strange being here by myself and not hugging/kissing him at all. I guess one of the silver linings of this situation is that it's strengthened our relationship and I feel like I love him even more than I did before. He's pretty awesome. Here's a picture of him from yesterday that he's going to kill me for posting. Haha. That's what you get for being sick!

Kolette is here tonight, so I'm hoping Naya behaves and has a wonderful, peaceful, stable night. Dan's parents are coming in tomorrow and I'm going to try to get out of here early and take it easy tonight. Naya's animals will watch over her. They are very helpful.

Good night everyone. Thank you for all of your prayers, thoughts and support. While I have your attention in this arena, please send your positive energy and prayers to a friend that will be having her baby tomorrow. Her sweet little girl will be born with a serious heart disorder called HLHS and will be here at CHLA for surgery shortly after birth and will be in the NICU as well. I wish her the best.

Today was a pretty stable day. Sometimes, it scares me to write that as I really hope I'm not jinxing myself. Naya's stats held pretty steady today. Sats in the 90's, normal heart rate and good blood pressure. I think the most exciting news for me is that she is essentially off the pressers. There is still one on but it doesn't need to be for her BP. They are just keeping it on because it helps profuse blood to the kidneys and should help her kidney function. Which is, of course, a new issue that has cropped up in the last few days. If these sounds like I am repeating myself, you are correct. Naya was originally transferred to CHLA because of her kidneys. Basically, all the drugs they have given her to get rid of the edema has caused her kidneys to react negatively. So now she's off the diuretic drugs but the edema is starting to come back. That is the most frustrating thing about the human body. It's all cyclical. One thing may help her heart but then it hurts her lungs or kidneys. You just have to hope that they eventually snap out of the cycle and their bodies adjust. Driving us crazy in the meantime.

It was a nice day in here though. Naya is sharing her room with an adorable little boy who is on ECMO right now. So that means 3 nurses in their room at one time instead of the normal 2, so Naya was lucky enough to have 2 of her primaries with her today. (ECMO requires 2-1 nursing.) We had a nice day of "That's what she said" jokes, Food Truck finding (there's an ap for it!) and costuming of the stuffed animals. Dan went all out with her lion. You can't see it but he has little booties on as well. Dan is very cute. He's like MacGyver when you give him a project.

We did have a funny/scary experience today. We were sitting here, doing our normal thing and all of a sudden, Naya's heart rate dropped to 75 (it's been hanging at about 145ish all day) and the monitor started frantically beeping. I freaked out for a second but Brooke told me not to worry. Apparently, for the past day, Naya has been doing this every time she poops. Essentially, she is bearing down when she goes potty. Sure enough, there was poop in her diaper. And don't ask me how she did it, but somehow she was able to push her catheter out of her bladder at the same time. Amazing skills my little one has.

Dan and I are going to head "home" soon as we are exhausted. It's amazing how exhausting emotions can be.

Good night everyone and thank you for your thoughts, prayers and support. As always, we appreciate it.

PS - Chicken Update:
I mentioned in one of my earlier blogs that there are random chickens in a parking lot across the street from the hospital. Well now, there are baby chicks too.

The Plan

--Spoiler alert, Dan is writing tonight. Jamie is exhausted and feels like gossiping with the nurses right now, so I'm letting her be. I am surrounded by women and am a little annoyed that the Giants lost again.--

We came in this morning to hear good news that Naya's night was stable and that her vitals were still holding. Oxygen saturation was still at 95+ and her BP was holding. Her O2 saturation is at 96 right now, though we saw it dip to 86 during the afternoon. They believe it was just positioning of the ET tube that was causing the de-sat.

Her kidneys have taken a little beating over the last few days with the medications they give to help her pee (which helps her decrease the overall puffiness). They are cutting those medications temporarily to see if it helps, though it may make her edema come back even more.

Long term, the current neonatalogist is consulting with the surgeons to see what the criteria is to accept her for exploratory surgery again to take a look at her lymph system and do a biopsy. Criteria may include coming off all the pressers (Epi is still off, Dopa at 12), lowering/coming off the Nitric Oxide, lowering settings on the Jet vent and/or having more days of stability. We will learn what the criteria is in a couple of days, so until then, we are hoping/praying/believing that she will stay stable and continue fighting. Everyone here is just in love with this little girl and rooting for her. It really helps us.

Lots of love to everyone who is supporting us through this. We appreciate you all.

The Fighter

Naya absolutely astounds me. Right now, her sats are holding steady at 97/98 (out of a possible 100) and her blood pressure has remained stable all day. We are so absolutely thankful and grateful that we did not lose her yesterday. It would have been dreadful for multiple reasons. Yesterday, our first niece was born. Mom and baby are doing well and we are so thankful for that. She is a beautiful little girl and I hope that someday, my princess will be able to run around and play with her lovely cousin.

Dan and I are doing all right today but we are still apprehensive and torn. We have ridden this roller coaster for so long that we know not to get our hopes up too high when good things happen. I know that sounds depressing but there really is no other way we can see to deal with it. Hope for the best and prepare for the worst. I just know that my daughter is a fighter. Yesterday, before they readjusted her chest tube, I kissed her and told her and told her that if she was too tired and sick and wanted to go, we would let her. That no matter what, her dad and I would love her and that she would always be in our hearts. I told her that it was her decision and her actions would dictate what road we would take. I don't know if I'm fooling myself but I truly believe she made the decision to keep trucking. She wants to keep fighting and when she wants to give up, she will. At least that's where I'm at today.

Everyday, I play her music on Pandora on my phone. I am one of those people that always takes musical lyrics to heart and interprets them within the state of my own life. Today, the song "You Are My Sunshine" came on. I don't know if you all realize this but that is an extremely depressing song but also very fitting. It says:

You Are My Sunshine
My only sunshine.
You make me happy
When skies are grey.
You'll never know, dear,
How much I love you.
Please don't take my sunshine away

The other nite, dear,
As I lay sleeping
I dreamed I held you in my arms.
When I awoke, dear,
I was mistaken
And I hung my head and cried.

I never really listened to the lyrics before but I did this time. I too restlessly dream and think about my baby all night long. I kissed my little girl while stroking her head, singing along and crying into her hair. I really don't want to lose her. I know that any parent in my situation says the same thing but I don't care. My heart is breaking so badly right now. It kills me to think that she is suffering but at this point, I can't let her go. She is truly the sickest kid in this entire unit right now and this is the hospital where they send the sickest children. She has something that they have no idea how to treat, let alone how to diagnose. I try to have hope but with that fact slapping me in the face every minute, it's very hard. I truly don't know what to think or feel. I just have to keep taking this day by day, hour by hour, minute by minute and hope I don't go crazy in the meantime.

Thank you all for your kind thoughts and words. It may not seem like it but it does help us during this time to know that so many people are thinking and caring about our baby.

Do Not Go Gentle Into That Good Night

I don't really know how to start this one tonight. Naya had a terrible night last night. Enough so that we got our first late night phone call from the hospital. The pneumothorax came back and caused her to de-sat. Her blood pressure plummeted as well. She was looking better when they called us though. When we came in this morning, her blood pressure was incredibly low and her sats were awful. Dan and I were sure we were going to lose her this morning and started preparing ourselves as much as someone humanly can. We both agreed earlier in the week that if she codes, we aren't going to let them do chest compressions on her. We also aren't going to let them put anymore chest tubes in her. We don't want to cause her any more pain and suffering. If she codes, she is letting us know that she is done fighting and we have to let her go.

The doctor decided to reposition one of her chest tubes to see if that would help the pneumothorax. After two tries, she accomplished it and Naya's sats and blood pressure started to rise. They are still looking good right now and I hope it's not a temporary thing.

I have to brutally honest now. Naya's situation is not looking good. In a normal course of septic shock, a patient will almost always be in the recovery stage during the third week of illness. Naya has been in critical condition for 6 weeks now. Her lungs are essentially ruined and her body is just not responding to treatment. Dan and I may be optimistic and want to believe that she will recover but we know the odds of that are very slim. Her quality of life after this is also definitely in question. There may be a point reached when we are not helping her anymore and treating her is just delaying the inevitable because we don't want to let her go. We are not quite there yet but the doctors feel that things may have run their course. We are still holding on but it's getting harder in light of the situation. We love our daughter so much.

Every night, I say the same thing to Naya. I tell her "Do not go gentle into that good night. Rage, rage against the dying of the light." The truth is, she came into this world choosing her own path by deciding to make her entrance the day before I was supposed to be induced. I will let her to continue to make her own choices.

Decisions

I'm feeling a bit better today so this will be a normal entry for me. Last night, after I finished writing, Naya's lung collapsed again. We opted to put another chest tube in and it helped her quite a bit. It was completely terrifying though. Again. Sometimes, I feel like I'm living in a nightmare. I actually have to remind myself that I am not dreaming and this is real life. And it sucks. I'm so exhausted, it's been 6 weeks and they still have no idea whether she is going to live or die. They still have no clue as to what is wrong with her. They know she went into septic shock but they still don't know what caused it. That's the part that's so damn frustrating - we have no idea how this happened. It could have been some disease that she has that they haven't figured out yet or it could have been some random incident. They have NO idea. They also can't tell us a prognosis because she is still too sick. They have hope and don't want to give up but no one has any idea if she's going to survive and if she does, what her chances are of living a normal life.

This is what Dan and I have been contemplating for the last few days - what is her quality of life going to be like after this incident. We know she's obviously going to be behind developmentally but is it going to be something she can catch up with and live a normal life or is she going to be mentally handicapped? And if so, at what severity? Does she stand a chance of surviving or are we keeping on fighting because we can't let her go? Is she suffering? Is she going to continue to suffer? We have no idea. I wouldn't wish this situation on my worst enemy. It sucks. Period. This is why I have been in such a foul mood that last two days. My mind is going a million miles an hour and it's all on crap that I would do anything to not have to deal with.

One thing we did decide, is that she is still wanting to fight. She has a will to live that is evident to everyone in this unit, doctors included. And if she still wants to fight, then we need to let her. As one of her primary nurses said, she will let us know when she gives up and she's not there yet. We may be exhausted and emotionally drained and depressed and falling apart but she needs us to be positive. Which we are for the most part. We try to save all the negativity and shitty conversations for outside her room. She doesn't need to hear them.

Anyway, she had a much better day today and we are very thankful for that. Dan and I are going to head back "home" soon and try to get a good night's sleep as we are both exhausted and didn't get much sleep the past few nights. Hopefully, my attitude is a little more positive tomorrow. Believe me, I was much worse a couple of days ago.

Short Update

I'm just going to give a short update tonight, as I am still sorting out my feelings from the past few days and I'm not quite ready to express them yet. Too many four letter words may be written and I don't want to put them out in the public domain. Naya had a pretty decent day today. Great sats (in the high 90's - which is awesome) and great BP. Her heart rate was a bit high today but nothing crazy. She likes being on her belly.

Lindsay and Phil came to visit us today and Dan's friend Miguel also met up with us for dinner. We had a nice time and a good visit. When we came back after dinner, Naya's stats had fallen quite a bit (mid-low 80s) and we are still waiting for them to (hopefully) come up. The belly honeymoon may be over. The good news is that one of her pressers is almost completely off and should be there by tomorrow. Then we will start working on the other one. Her lungs are a completely different story but I'm not ready to go there yet. Let's just say that they are terrible. Awful. Painfully, heartbreaking. I wish I could offer her up my lung and just fix her but I can't. Super frustrating. We are scheduled to talk with the neonataligist and hopefully, the pulmonoligist tomorrow about the plan for her lungs. I just hope that her CO2 levels will be lower and her oxygenation will be higher tonight. I know it's a lot to ask for specifics in your prayers but we would appreciate it.

Thank you everyone for your support. It means everything to us.

A normal day of craziness

Jamie doesn't feel like blogging tonight because of today's rollercoaster of emotions, so her awesome husband will make a guest appearance and tell it as it is.

We came in this morning to sats in the lower 80s. They hovered there and dipped into the high 70s throughout the day. (By the way - she is reading over my shoulder as I type and has just made 2 3 grammatical corrections... darn English majors.) Her heartrate and blood pressure were just fine, so today's plan was to re-address putting her prone (on her stomach) so that the air in her chest (pneumothorax) which is above and around her lung could rise to her back. By going prone, this would help the air escape out of the chest tube (which is positioned below her lung). So they flipped her this afternoon and Naya tolerated it just fine. Her sats are now back in the 90s which is great news!

After they flipped her, the team noticed that she had some pressure sores on her head and back. This is normal given that she had so much edema over the last month and was unable to be moved. They put some magical bandages on her that will help heal those sores, however they had to give her a little haircut in order to tackle the head sores. 

She has also been weaned down on the epi to .08 which is great since we want her off of those pressers.

All that said, she still has very very sick lungs and is needing strong steroids to help her.

Side note - Ty just called and wanted to say goodnight. He also wanted us to check Jamie's email cause he just wrote another email and is probably awaiting a response. Do you remember discovering email? I don't but I am sure discovering that technology exists to send mail electronically is mind-blowing for him. Thank you Toni for creating him a gmail account. And thank you Ty for the awesome emails. They make us smile.

Other news... Jamie and I have a game where each of us tries to find the most hideously dressed person in LA for the day. Without getting into too much detail (we walk along Sunset and Hollywood Blvd. every day), it keeps us amused. We have another fun game where we jokingly guess the different alarms that go off outside of the hospital. At lunch today, we laughed that the alarm for fries at Wendy's was the occilator tube alarm having too much water in it. Or that the Dopamine/Epi/Oreo/whatever med is up. Our social worker was impressed that we could name the alarm that was going off in Naya's room when we were sitting outside of her room. I guess we come up with these games to help keep us sane and laughing, though they sound kinda crazy writing about them.

I'm sure I'll make other guest writing appearances, however before I sign off, let me reiterate how thankful we are of everyone supporting us. All the positive thoughts, prayers, blog comments, Facebook messages, Words with Friends games and donations are truly appreciated.

Rainbows

I am going to start where I left off last night. Almost immediately after I was done writing, Naya started desating. (Desating is when oxygen levels decrease) A lot and drastically. I was crying and had to leave the room. It was terrifying. I went down to the Chapel and sat there for awhile while Dan stayed in the room with her. I felt bad leaving him alone but I didn't want to freak out in the room. After about an hour, they were able to get her sats up a bit and I returned to her room. Dan and stayed here until about 11:00 or so and then trudged back to the house feeling a bit defeated. We had gotten a bit spoiled by the 5 good days.

This morning, we came in and her saturations were a bit better but not great. The positive though was that despite this slip, her blood pressure has remained consistent. We stayed here for awhile and then Dan, Toni, Ty and I walked to the Church up the street. Again, it was a pleasant experience. I actually really like this particular church - not at all preachy and definitely more a learning and loving atmosphere. There was a baptism today that I found quite beautiful. The Reverend asked the congregation to hold out our hands and send our own blessings to the water. I blessed her with strength. Dan asked for her health. I felt a bit like the fairies in Sleeping Beauty, offering the princess gifts that should prove to be useful in her life. It was very touching.

Afterwards, we came back to the hospital and hung out for awhile. My sister set Ty up with a gmail address. So far, I've gotten about 8 one sentence messages. My favorite said "this thing is so cool!" My son just discovered email. Naya had a pretty steady rest of the day and remains about the same right now. My favorite part was that we were able to ween the pressers quite a bit, which everyone is very happy about. Her heart is beginning to show some signs of recovery, which is a beautiful thing. Now we just need to get her lungs to follow suit.

We left at shift change and walked to a pizza place a couple blocks away for dinner. As we were walking there, we noticed some dark clouds in the sky. A thunderstorm was coming in.

For the rest of the country (and the world) this might not seem like a big deal but we are in LA. It doesn't rain in September in LA and it especially doesn't Thunderstorm. As we were eating dinner, it started raining a bit and thundering and lightning outside although the sun was still shining. Of course, that made a rainbow. I thought about this awhile and realized that last Monday, when Dan and I were walking to the hospital in the morning, it started sprinkling a bit in area that was directly over the hospital. I didn't think much of it then but that was the day that Naya got the chest tube in and the edema started leaving her body. Perhaps the rain was a sign of changing times and this thunderstorm is the same - the rain washed away the weakness in her heart and this storm will do the same for her extremely sick lungs. At least that's what I want to believe in - the light at the end of the rainbow.

2 steps forward...

Today started off wonderful. We slept in by accident and strolled into the hospital an hour later than we normally do. Luckily when we got here, Naya was doing about the same as we had left her last night. Still low on the pressers, vent settings were the same and blood pressure and stats were looking good. We stayed with her for awhile and then decided to go exploring with Ty and Toni. First we went to the La Brea tarpits. Very interesting but quite stinky. I thought Ty would love it but he wasn't very impressed.



Since the tarpits weren't a hit, we decided to take the drive up to the Griffith Park Observatory. I think this place should be a must see for anyone visiting LA. It was a beautiful drive, first through very fancy houses and then up the hill to wilderness. We had to walk a bit far from the observatory and hike up there but it was worth it. First thing you see is an amazing view of the Hollywood Sign. You just have to stop and take a few pictures of it. Here's Ty squishing it.


We then walked into the Observatory and it was amazing. First of all, admission is free. You are able to get amazing views of the city and mountains and the building itself is beautiful. The best part though was when we walked inside and saw that they had amazing exhibits and learning stations about space. Ty was so interested and excited to see everything, so that made me extremely happy. It was great being able to spend time with him doing something fun for a change. This past month has been incredibly rough on him and he's taken it like a champ. I'm very proud of my little man and his maturity during this time. Great kid.

When we got back to the hospital, we were all in good spirits. Until we went up to her room. About 10 minutes before we got back, Naya had desated and had to be taken off her vent and bagged to be brought back up. They were just finishing up xrays to try to figure out why. Scared the shit out of me and brought me crashing back to reality. They think she just had a plug in her line but who knows. Luckily, she was able to bounce back very quickly, which made me feel better. But, it did get my brain moving into terrible places. I'm so terrified of her a) never getting off this vent and b) the consequences that this illness is going to have on her long term. Is it going to effect her development? Her brain function? Is she going to be able to live a normal life? Is she going to be mentally handicapped? I am terrified that this is going to be the case. I don't know if I can handle that. Dan keeps telling me that babies are resilient and her brain has never been completely cut off of oxygen but I am still TERRIFIED. My head has just been racing with these thoughts and I can't stop them. This is excruciating. I keep telling myself that I can't worry about the future and I just have to take this day by day but it's hard not to think about it. This is not what you want for your children and there are no concrete answers about what's going to happen. I just wish she could get off this damn vent. I just want to will her lungs to heal. I want to command them to heal. Sometimes, I really don't know how much more I can take.

I know I am ranting but I do have to every once in awhile. This process is truly a roller coaster and my emotions are all over the place. I just want it to be over and for her to come home.

Chickens, Cats and Hummingflys

Toni and Ty came down to visit us for the weekend and are here now, so I am going to keep this short and sweet. It was a pretty uneventful day in the NICU - which is a good thing! Naya had another good night last night, great stats, good amounts of pee and general stability. I still can't get over how good she looks compared to Monday. I am definitely not used to how tiny she is. So fragile looking now, like how a newborn should look I suppose. The doctors were very happy with her progess this week and started talking about goals for next week with weening more meds and making other adjustments. It is very nice to hear them talk about the future and long term. Such a change. She was given another blood transfusion this afternoon and they had to ween her blood pressure meds quite a bit during it. They were able to keep them at lower levels afterward, which was very exciting. It seems like her heart is finally getting stronger, as she is able to sustain a gradual decrease of meds. They have finally figured out that she prefers these adjustments to be made slowly and it's definitely helping her.

Her lungs are a different story, as they are still quite sick and she is on a lot of support via the ventilator. Unfortunately, the only medicine for her lungs at this point is time. They are slowly going down on vent settings but nothing very significant. I hope that her lungs start making improvements soon as that as the key to her recovery. Again, I think it's going to have to be similar to heart with slow and gradual adjustments being key. I hope that that is what I will be talking about a lot next week. I feel in my heart that we are finally moving in that direction.

Before I go, I should probably explain the title of this entry so everyone doesn't think I've completely lost it. (Dan would probably disagree with that statement.) Everyday when we walk back to the Ronald McDonald House, we pass a parking lot across from the hospital. In the morning, there are chickens roaming around this parking lot. At night, there are multiple cats hanging out in the entry way to this parking lot. In the afternoon, there are weird, gigantic dinosaur-sized flys buzzing next to this parking lot. (Seriously, these flies look like a hummingbird and a dragonfly mated and this is their creation.) Dan and I are still trying to figure out what the hell is going on this particular parking lot but my theory is that these chickens and cats are guarding the entry to some weird world that the hummingflies escaped from. That, or it's proof that everything in Hollywood is weird, even their chickens, cats and insects.

Calm in the Storm

Remember how I said that it was eerily quiet here yesterday in the NICU? Apparently, that was the calm before the storm. When we walked in this morning, it was like a tornado had blown in overnight and landed some more babies in the NICU. Yes, Naya now has a roommate and it's a boy. It's not the preemie, it's another full term baby with intestines that have grown into his lung area. They originally thought he was going to need Ecmo but luckily, he doesn't. Just another really sick little boy. The preemie was brought in late last night as well. So sad. Only 24 weeks gestational age. 24 weeks! I can't believe how teeny-tiny that poor little thing is. Picture a man's hand. That is how big a 24 week old fetus is. Breaks my heart. So needless to say, with these two new admits in this section alone, the ward has been a bit hectic today.

I did, however, title this entry "The Calm in the Storm." Naya had another stable night last night and another stable day today. Her sats were consistently in the mid 90's (highest I have seen them), blood pressure on the high end (enough to ween some pressers) and a heart rate that averaged about 150 for the day. This is almost normal. She also finished off the day yesterday with another -250+ fluid input/output and is trending towards another negative day today. Granted, she wasn't very active today but I think her body is just so not used to being so "normal" that it decided to rest after all it's hard work. She also looks sooo much better. Almost back to her normal size, which is a wonderful thing. This evening, her stats have slipped a bit but they also did a complete line change on all her meds and this causes all babies to slip. She is gradually building back up (a little too slowly for my comfort level) but we won't leave until we are comfortable with her numbers again. (Which they have just become while I've been writing this.)

Dan and I were able to have a pretty decent day today. We walked to Los Feliz for lunch and I found both a man selling cotton candy and an Italian deli selling pizzelles. I am a happy camper. The wonderful ladies I work with, Connie & Shawna, also sent me and Dan a cupcake delivery today. I still have to pick out a few favorites and then we are going to share them with the nursing staff. Any suggestions?

This afternoon, I took a long walk while Dan did laundry. I went by the crazy, large Church of Scientology that is down the block just to check it out. This thing is MASSIVE. Seriously, it takes up an ENTIRE city block and is bright purple. I took a picture of it but didn't venture any further than the sidewalk. Too risky for my blood ;) Later, a couple of Dan's friends visited us and took us to dinner. Pretty decent day.

My daughter is also officially famous. The New Times, a local paper, published an article about her today. Here is a link if you are interested. http://www.newtimesslo.com/strokes-and-plugs/6576/baby-naya-the-warrior-princess/ I love the title! Just goes to show you that Naya's plan all along was to go to Hollywood and become famous. You have accomplished your goal little lady. In all seriousness though, we are again blown away by the wonderful support we have in our community and from our friends and family. We love and appreciate you all. You are truly helping us get through this. Keep us in your prayers - the warrior princess still has a lot of fighting to do.