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.