Bella is flying with the angels..

It's been 5 days since Bella passed away, and it's barely starting to feel real.. I cleaned my room today, I had purposely been putting it off. I didn't throw anything away, I didn't move anything out of its place; I couldn't. The realization that she's really gone is starting to kick in. The clothes she wore on her last days still smell like her, that beautiful scent of hers. Her favorite toys are in the same bag I brought them home in; I can't get rid of them. I folded her blankets and put them back in their place, I folded her clothes and put them in the drawers, I put her little brush back in its place; I can't believe I'll never see that beautiful smile again. Last night it finally started to sink in, and it hurts. I don't want to let the pain take over, I can't just yet; I'm not ready for that unbearable pain that's coming. It creeps in occasionally, and I know it's going to take over soon. I didn't go visit her grave sight yesterday, and I feel horrible about it. Every single day since Bella was born, I never once went an entire day without seeing her. When I realized that it was so late in the day, and I wouldn't be able to go see her, the pain I felt was unexplainable. I know she's in a better place, but I can't help but want her back. I miss the way she fit perfectly in my arms, and the way those big brown eyes looked up at me. The way she'd touch our faces, as if she were telling us that things would be okay.
On November 30th, the doctors broke the news to us that Isabella was not getting better, and that we would have to make a decision about her future and what we wanted for her. Bella was not able to eat by mouth, she was very delayed, and physically she didn't do very much. She was aspirating her own saliva, which was causing her lungs to deteriorate. The option was to repair the stomach surgery and put in a treach vent. However, this would only lengthen her time a little bit. It was the hardest decision I've ever had to make in my entire life. We didn't want her to suffer anymore, she was tired and we could see it. We'd asked her to fight a battle that she would not win, and it'd be cruel of us to ask her to keep fighting for us. We decided to go for comfort care so that she would go as peacefully as possible, and wouldn't feel pain. It all happened so quickly, it felt as though I had been sucker punched in the stomach. We decided that we would continue with her care as we had been before going into the hospital, and when she started to show signs of the pneumonia taking over, we'd start the comfort care. I honestly didn't believe that we had so little bit of time. I had hoped that the pneumonia would clear up and we'd be able to take her home, but that didn't happen. On the night of December 2nd, Isabella had a really hard time breathing. It broke our hearts to see her gasping for air. The doctors did not give much of an option, other than providing more oxygen, which we knew didn't help at all. She was gasping for air for about 20 minutes, and we could see the pain and desparation in her eyes. We never wanted her to go through that pain, ever again. We made the decision to start the comfort care that night. A decision that I questioned every single day after that, until the very last day of Isabella's life. For the rest of her days she was pretty drowsy from the morphine, she hardly woke up. There were moments when she'd still open her eyes and reach for our faces. I couldn't believe that I was watching my daughter die. I hated myself, I hated the doctors, I hated God himself.
 She kept fighting, there were times when I thought that maybe she just wasn't ready to go. It was almost as though God himself sent the Doctor to answer my question. The doctor came in and looked at Bella, her breathing was steady compared to the last few times she had seen her. I told her she was still fighting, and she said, "Isabella is a strong little girl. She's fighting. Not because she wants to stay, but because fighting is all she knows." I thought about this, and it honestly made so much sense.
 I watched Bella breathe, every rise and fall of her chest. I could see the struggle, I could see her fighting. The following days happened so quickly. They gave her more morphine and it made her sleepier. The goal was for her to be sleepy so that she wouldn't feel the desparation of needing more oxygen. On the morning that she passed away it happened in a matter of minutes, but to me it felt like time had just stopped. She took her last breath, and it took me a little bit to realize that she had actually stopped breathing. I woke her dad up and we both knew. Her heart kept beating for a few seconds and then it slowly faded away. She looked relaxed, like she had finally breathed a sigh of relief. Bella had entered the gates of Heaven, she was flying with the angels.

Lesson Learned..

It's only day three of our hospital stay, yet it feels more like week three. These past few days I've been busy feeling sorry for us. I've been dwelling on all the things we're missing out on and all the things we could be doing. I want to be able to spend the holidays at home with Bella, not at the hospital. I want to be 21; instead I've watched it go by and I'll be 22 next month. I want to be able to take long walks in the park and enjoy the sunshine with her. I want us to be anywhere but this hospital. Well things can't always be the way we want them to be. The great thing is that I think they finally figured out what is wrong with Bella. They think the ring on her stomach might have slipped and this caused her to throw up. They think that this resulted in aspirating and then fevers. Fingers crossed. I'm hoping they've figured it out for sure. This is going to be one of the longer stays, around 2 to 4 weeks. We'll see, hopefully not. The surgery can't happen until the pneumonia is cleared up so it's a waiting game. I've learned all too well about the "wait and see" plan. Ugh. It'd be nice to have answers for once. So I've been sitting in this hospital room, letting my mind wander. It's been wandering to places it shouldn't; that dark place where I wish this wasn't happening to us. I wonder sometimes, where is God now. When my daughter is going through all these things, where is He? How about when she's poke 50 million times, where is He then? And just when I start to wonder if I truly believe, He manages to make a believer out of me. Just like that. He puts someone or something in my path to remind me that we are not alone, and that we are only given as much as we can handle.
On our first day here, I dreaded having to share a room. Oakland, I tell ya, they seriously need to get a bigger pediatrics unit with PRIVATE rooms. Geeze. Anywhoo, I walk into the room, dreading who might be on the other side of the curtain. Another obnoxious parent who tunes their child out? Maybe someone who is constantly on their cell phone while my daughter tries to sleep? Or the lovely parents that listen to the TV full blast oblivious to the fact that they have neighbors? But no, not this time, instead I was greeted by a warm smile. The lady came over and introduced herself. I'm so bad with names nowadays, but she was a total sweetheart. She had been here for a few days and she offered to help me get settled in. She looked at Bella and told me how cute she was and that if I needed anything to not hesitate to ask, She knew how to do everything since she had been here for a few days. I knew how to do all the things she was showing me (we had been in this same place, in the same room, for a few days, a few weeks ago) but I didn't have the heart to tell her that, so I let her show me. It was nice to have such a nice neighbor, this was new, I liked it. As the day went on, I got to know her a little better. She told me about her 7 year old son, he had a pneumonia too, but it was rather severe. He'd had surgery and was probably going to be here for a while. I also learned that her husband is disabled and that she is 16 wks pregnant. I was rather surprised that she was so calm. She explained that she worked two jobs since her husband couldn't work. That really got to me. This petite little woman was supporting her entire family by working two jobs, her son had just had surgery and her husband would need one soon also, AND she was pregnant. I could honestly not begin to imagine how hard things must be for her. I admired her strength, and her ability to look at the bright side. She assured me she'd be okay. That first night, I didn't see her rest at all. She kept rubbing her belly and whispering something. I couldn't believe my eyes. I had felt sorry for us earlier that day, and then I felt blessed. Extremely blessed. I have a job, at times it can get stressful, but I couldn't imagine working two jobs. That was His first lesson for me during this stay.
Lesson #2 came today. I met a 19 year old girl; she's a single mother of a medically complicated child, like mine. Her daughter was born with problems in her intestine, they weren't attached or something like that. The girl is a single mother and spends almost all of her time here. Since we moved to this room, I've seen her leave once, but it was only to get something to drink and then she was right back at it. She reads to her daughter and tells her all kinds of beautiful things. She is on top of the schedules that they have her daughter on. I am amazed at how wonderful she is. But I'm really impressed that she can do this on her own. Wow. I guess, if you have to do something and you have no other choice, you'll do it. Also, by far, her age is what got to me. She's a baby herself, and she's caring for this little girl; but she's doing a wonderful job, and I'm sure that there is no one that could've done it better.
These hospital stays never fail to remind me that things could be worse. I see all these amazing parents that have so much going on, and I can't imagine dealing with all those things. My daughter has a lot of medical problems, and I'm sure some people wonder how in the world we deal, but we just do. We're all given only as much as we can handle, no more and no less.

I've become that annoying mom..

Another hospital stay, thank goodness this one was only 3 days long. Still no answers as to what is causing the fevers and she's still throwing up, but I think being home is better for us. The nurses don't do anything that I can't do at home. San Francisco Kaiser feels like a vacation spot compared to Oakland Kaiser, so I can't complain too much. During this stay I became the annoying mother that questions everything. Why are you going to try to put in an IV? You poked her 3 times already, your done. Thank you. What? You want more blood? Ha! I think not. I know it's best to let the doctors do what they think is best, and I probably took my frustration out on the doctors that had no idea why I was so upset, but I've had enough. Our last hospital stay involved various tests that had nothing to do with the fevers, numerous blood draws over and over again, and futile attempts to get an IV. We ended up going home with no answers, and they have yet to give us an answer. So when we walked into that ER yet again, I was adament about not letting them use my daughter as a push pin. She had another UTI, just as I had suspected. Go figure. Something isn't completely right, I know it, but I feel like I'm backed against a wall here. I need to be more aggressive, I should probably demand a second opinion, but I just don't know how to do it. Everyone has a suggestion, everyone thinks they know what is going on with Bella, they all think its easy. It's not. I'm dealing with work, school, and Bella's current issue. She has ongoing fevers that only occur during the very early morning and she's throwing up milk despite the fundoplacation surgery. I know I need to get things going and try to get answers, but getting the doctors is close to impossible. I'll figure it out, I've got to.
This week has been so hectic, work has been beyond stressful, I couldn't even take the time off to be at the hospital, and school.. well that had to be put on hold for this week at least. Bella's dad was a huge help. I don't think I give the guy enough credit sometimes, he made things so much better. He stayed with her while I was at work and gave me a chance to get some sleep. He's great with Bella, it makes my heart melt when I see them together. He adores her, just like she adores him; It's truely a beautiful sight. We have our differences, but I think we're doing a pretty good job so far with Bella. I pray that we will remain friends for Bella's sake, she needs parents that love her and don't lose sight of that, not parents that are at each other's throats all the time. We've had a rough first year, there's no other way to describe it, but I know that we both love Bella and that's all that matters. I love him for loving her with that same unconditional love that I have for her. Isabella is my world, just like she's his too. I'm not exactly sure what God has planned, but I trust him. We have an exceptionally wonderful little girl, and I know that our future holds something extrodinary.