A travesty, a sham, and a mockery

So check this out. The other day Braden was on his way to take our broken computer to get fixed, and on the way something from a truck in front of him flys out and his tire explodes. So he doesn't take the computer. By this time he has to go to work. He drives my car to work. My car doesn't start when he tries to come home from work. So the next day he drives his car (on the donut) to try to figure out the deal on my car. It was at this time that he notices that the computer is missing from his car. The same computer with the pictures and videos of the first month of Lila's life that exist nowhere else. He comes inside and tells me and I begin to immediately cry my head off. He made some signs and posted them around and within the hour we had the computer back. Busted up and beyond repair. But at least hopefully we have the hard drive so one day we can pay some rich geek to give me my pictures back. So I feel better. A whole lot better. At this point in my life I do not care about the loss of the computer. Put it on the list. I think everything we own (or financed) that has a key or a cord is broken. That's not true. I can be so dramatic. Our ugly-as-sin six dollar toaster that I want to break, is solid. And I have no complaints against our quesadilla maker either. That thing has been going strong for years. Which, tragically, may just be our most used kitchen appliance. We really would have problems if that thing acted up. Braden thinks he's eating crappy now....

Anyway, so yesterday we find a box of girl scout cookies on the doorstep with a note unmistakeably written by a male adolescent. So let's recap: Some 11 year old neighborhood hoodlums break into our car, steal our computer causing me to bawl my little eyeballs out, steals cookies from some cute little girl in a little tan jumper, and then leaves them at my door? Are you kidding me? If they had left thin mints or samoas- well that's somethin. But it's some sort of shortbread rubbish. Who apologizes with shortbread?

OK fine. The only hard facts of my case are that our computer was stolen and we did recieve a box of cookies on our doorstep from one of the apartments above us. I made the connection between the two events. Maybe I'm wrong and we have a secret admirer. Or maybe someone was just being super sweet and I'm being a total jerk. In any case, I'm going to make a dang quesadilla.

Humbled...

Sitting in church yesterday I realized looking in Anabelle's backpack that everything in there was given to her by a ward member or a friend during the last month. Right down to the snacks and juice box. And glancing around the room I began to recall the meals, cards, gifts, babysitting, phone calls, and emails from an overwhelming amount of people in that room. Some that we know well and others not at all, but the love and concern was the same. It was a humbling realization that Braden and I have marveled at time and time again in the recent weeks. There has also been an amazing outpouring of support from friends & family near and far. I have had a few people tell me that they are amazed at our strength or faith. Which is interesting. I have felt strength beyond my own throughout the last few months. I have felt the power of the prayers of others literally bolster and carry me. I think of all times we heard, " We're praying for Lila" and I always wanted to say, " I know, I can feel it".

I was talking to my Mom on the phone one night in the hospital and she told me something to the effect that she was proud of our faith. If you know anything about my Mom or her life you realize what a compliment this was. I can sincerly say that I don't personally know anyone more faithful than my Mom. My freshman year of high school my Dad had an AVM rupture in his brain that left him in the hospital and unable to work. My Mom began teaching kindergarten during the day and going to school at night because she was teaching on an emergency credential. She was literally working around the clock to support us and there were times I went days without seeing her. At that time I was waking up at 4:30 every morning to attend seminary before school. I will never forget waking up and walking past the living room to find her kneeling in prayer in the insane morning hours. Or finding on the kitchen table amidst her endless school papers and projects, her scriptures open, lying on top of everything else she had to get done. What an impression this made on me. She'll probably never understand how much I appreciate this example of faith. It told me that when things are hard you pray. You do the things that keep you close to the Lord, the things that remind you how blessed you are. What I love most about this is that she wasn't trying to teach me anything. She had no idea that I snuck past her all those mornings in the wee hours. She just lives that way, that is who she is. And now that I have my own daughters there's nothing I want more for them than to rely on the Lord and trust in His love. We named Anabelle after my Mom because I want her to remember the faith of her grandmother and her stalwart diligence to do what is right.

I know it broke my Mom's heart not to be here with us recently, but every time I told her of the kind things people had done for us she would cry in gratitude that we were being taken care of. I feel like our ward and friends here were the answer to our families prayers who could not be with us. We feel so overwhelmed with blessings and overcome with the feeling that the Lord is watching over our little family and caring for us through others.

Wow, a week went by?

I've been easing myself back into exercising. I decided one morning this week that I might try to break into a little jog during my morning walk. This was the same morning that I was trying out a great jogging stroller given us recently by a friend. I start out walking and Anabelle says, "Mom, go faster". So I start running and she begins clapping and yelling, "Oh! Yea Mommy!" So I start thinking that perhaps this is a good situation. She's so encouraging and excited about my effort. This could be my ticket back into shape. So after a bit I start feeling sore in all the right places so I return to walking. Anabelle immediately says, "Mom, go faster. Run Mom. Run again. Go fast again." Hmph. So I run again. You know, trying to impress the coach. But after a few minutes when I try to walk again I get the same nagging,"Run Mom, go faster. Again, again Mom. Go fast again". I spare her the details about the labor but I do briefly explain the situation and tell her that I'm tired and need to take a break. She says to me with furrowed mocking brows and pursed lips, "Oooohhhh. Mommy's tired. Mommy needs to rest." It was a voice that told me my kid thinks I'm sissy sauce. Well I'm not taking that voice from a one year old. So I finish my little run and wobble inside to get the olympian toddler a drink because she says she's hot and thirsty. I think tomorrow I'll take Lila in the stroller and Anabelle can sit the bench.

I had a nagging thought that the reflux medicine from the first hospital had caused the seizures in Lila. I really felt strongly that that might be the case after researching the drug and finding that it has not been recommended for children and its severe side effects are neurological problems and seizures. My detective skills may not be the sharpest, but the seizures started shortly after that medicine began, and stopped immediately when we took her off that drug. So on Tuesday I didn't give her the morning dose. Still no seizure all day. So I also skipped the nightly dose. No seizure. The last medicine she had was Monday night and she hasn't had anything happen all week. Now I'm no doctor but the truth is they have no idea what is going on with her either, so she has just been medicated experimentally. I will take her to see the neurologist on Monday and maybe he will be upset that I did that. But I'm sort of over letting the doctors be the boss. In retrospect I feel like there was some sloppy medical care and perhaps some of this mess could have been prevented. Maybe I'm wrong and I'm open to that but in the mean time I feel okay about having stopped the medicine. Who knows where we'll go from here. All I know is that there's just nothin better than cuddling your own baby and smelling their newness and that's what I'm doing right now so things aren't so bad in my world.

Back in the saddle

Not one seizure since we've been home. It has been so nice not to see them all the time. She has also been much more alert because the seizures exhaust her. I'm not saying we won't see them again, but I'm so grateful for the vast improvement.

Anabelle has been such a champ through it all. I just couldn't have asked more of such a little person with their life turned upside down for so long. Thus far, she is totally obsessed with Lila and can't get enough of her. I'm prepared for the day when that may end, but for now it's mostly entertaining and so stinkin sweet. We do have our moments. Yesterday when Braden was leaving the hospital with her to drop her off for yet another sleepover I said, "Anabelle I love you so much" and she said, "I love Julienne. I love Julienne. I love Julienne" (The name of our friend). Talk about insta-tears. But she has also started to get possessive of me. I'm no longer "Mama", I've become "My Mama". I'm not sure if she's implying "not Lilia's Mama" but......

The other night I was putting her in bed and she said "I want to sleep with Mom." I said "I know, I want to sleep with you too, but I'm not going to bed right now. I have to clean the house." To which she began pleading, " I need to clean the house with Mama. I need to help Mama. I need to clean the house." As I walked out of her room listening to her kind request (that was getting louder and more desperate with every step) I thought, "Don't you fret sister. Your day is coming."

The time has now come for me to return to my kitchen after my month off and be useful and productive again. Sigh. I'm making a snack for church tomorrow for choir practice because Braden is the choir director and he wants to bribe people into staying. No shame in that. I've always been a strong believer in the power of a pumpkin muffin. And bribery in general. That's how I passed high school Journalism. And as it turns out, it's totally fine that I never showed up to class. I'm still a published writer thanks to blogger.com

Home again....

...this time for longer hopefully. When I say longer what I mean is forever. We got the results back from one test that showed she does not have herpes. I do not have herpes. Braden does not have herpes. But it sure looked like she might have it. She fit an awful lot of the symptoms perfectly. And she could have gotten it from anyone with a cold sore so I actually was worried today. Herpes kills infants or at least causes severe brain damage. Who knew? So they had her on an IV treating her like she had it just in case. But when we got the results they set us free. So now we return to the waiting game. We will continue to get results back for the next six weeks. Hopefully we don't find anything in any of them. She has had fewer seizures in the last few days. Not sure if that's due to the new med or the taking her off the old one for reflux. Which by the way, upon reading up on, I discovered that it should not be given to children and also not to people with seizures. Perfect, thanks for that one. What a bucket of hogwash. I also have not hooked her back up to her monitor, except at night when we're sleeping. It doesn't really make any sense to us in our opinion. If she does have a period of apnea it would most likely be caused by the seizure, and I am aware of every seizure. She has a distinct cry when she's coming out of one. So we're just gonna have a normal little wee one without any IV's, tubes, wires, cords, needles, or monitors. How exciting. We go back to the hospital to see the neurologist next week and see how things are progressing. It will probably take a while of tweeking her meds to find a dose that is effective at controlling the seizures while still allowing an acceptable living situation for us. Apparently the drugs will most likely make her tired and irritable. It's hard to imagine Lila irritable. I had a little chat with her and just explained that it would really be better for everyone if she not start being cranky. I explained that her sister is almost 2 and we're working with her on some tantrum and manner issues. She was very attentive and I'm pretty sure she's on our side about this one. She's heard Anabelle get rowdy when it's time to leave the pool. What a scene. At least Lila can hide in her carseat.

So it's party weekend for us. I'd hate to undercelebrate the fact that my kid doesn't have herpes. I've never thrown a party of this nature however so I'm open to suggestions. I figure start with some cupcakes, a little hummus and pita chips (fellow loyal Costco patronizers- you know what I'm talkin about). We'll have to take it from there.

The latest on Lila...

Well we enjoyed our weekend home as a female filled family of four. It was nice to be together on our own turf. I wanted to post our Fourth of July frolickings but sadly our computer broke. Braden remembered our old college compy stashed safely under our bed, and that is what I'm using now. I realize that is no place for a computer. Especially one that rightfully belongs in the Smithsonian because it is actually the first and slowest laptop ever. This post is actually a few days in the making. Lila could very well be missing the bus to school by the time it works.

Once we were caring for Lila on our own around the clock we realized how often she was having her seizure-like episodes. It was bothersome to us and disturbing to see. We just didn't feel right about things. I took her to the pediatrician check up on Tuesday morning. I took with me a video clip of one of her episodes to show the doctor. He felt uncomfortable with it and immediately left the room to make a phone call. He returned telling me that a neurologist at Children's Hospital downtown was waiting for me to bring her there immediately. I picked up Braden and Anabelle and we spent the rest of the day there. When the neurologists saw the clip he was also concerned. They did another EEG but she didn't have one during the 30 minute test. She had one right before and right after of course. So the doctor told me to count over the next two days how many she has and also to try to get more of them on tape. However, he called me yesterday morning and told me to bring her in to the hospital. When I got here he said that he reviewed the EEG from Tuesday and found abnormalities. Whatever that means. He said that they are seizures. He admitted her and hooked her up to an extended EEG in hopes of catching them on video stream as well being able to see the brain activity. My count at that point was 18 in about 15 hours. It is terrible to see and they became so frequent. I sat by her bed and pushed a button every time she had one throughout the night. He also ordered several blood tests but they have had so much trouble getting any. They have tried since we got here yesterday and just barely got a needle in tonight. It took eight different people, including a few specialists and two IV therapists. Each time they came they blew her veins and stuck her several times, pumping her skin and purposefully making her cry to try to get some. I could only take so many hours of this. Braden came last night when the seventh person was attempting. He said it is the saddest he has ever been. This morning after they took her off the EEG they did a spinal tap and a skin biopsy. So far the spinal tap has shown that she has an elevated red blood cell count and also elevated protein. This leads them to think the seizures may be from some type of infection. They have started her on an IV for one virus and are awaiting the results to see if she actually has any viruses. That should come back tomorrow evening. The skin biopsy will be used to grow a culture from her tissue which will take about 6 weeks. The neurologist said we are hoping that all of the tests sent out come back negative and that we never find out why she is seizuring because many of the things they are testing for at this point are rare diseases, many without treatments or good outcomes. Life altering is what he called them. He said even when her brain is not seizuring, her brain activity is not normal. They have started her on an anti convulsion medication and also vitamin B6 to see if that makes a difference and also discontinued the reflux drugs. At the other hospital they thought she was having reflux and that was causing her to have desats. They were not concerned with what I thought looked like a seizure. Here, we know that they are seizures and it is likely that that is actually the cause of the desats. Hmmm. Sorta wish we showed up here a few weeks ago. Plus this place sorta rocks. You know, as much as a hospital can rock. They showed Wall-e today and Braden and Anabelle went on a little date together. Braden also discovered they have basketball courts, air hockey, arcade games, and much more. And Abelle gets to be toted around in a wagon everywhere she goes. Which she is eating up. And who wouldn't really?

So back to the waiting game. Many of the tests take weeks to come back so hopefully we can take Lila home again this weekend and wait for the results there. As cool as air hockey is, I choose not to have 34 people come in a night to check on lactation, nutrition, medication, or whether there are paper towels in the bathroom. I know that there are no paper towels at home, I wonder if we could get a roll to go? We feel like we are finally in the right place and that we are working toward a real solution this time. We are so glad she can be seen here. I'm here with Lila tonight and I'm anxious for my 26 pound hopping ball of comic relief to show up in the morning. It is so hard on me to be without her. Lookin forward to her crackin me up in the morning. Without pooping somewhere. That's not all that funny anymore.

I smell cupcakes...

Shower/bedroom/timeout

Lila partied in our room all day today and is staying the night with me in my room tonight. Whoa. Does that mean we're goin home tomorrow? I think so!? I had my medication training tonight and we have to take CPR tomorrow. And if everything keeps going well....party at our place. But don't think you're getting out of there without folding a stack or two of laundry because, wow has it piled up through the month of June. She did her crazy seizure looking episodes all throughout the day which prevented me from taking a nap. I guess I'll have to get used to that. Or she could just stop doing it. Yeah, that would help me sleep better.

So hopefully this is the last night that A-belle retires to her shower for the night. The nurses said they could hear Anabelle and I in the shower singing all the way down the hall in the NICU unit. They also said they could hear her saying, "All done" at the end. What they didn't tell me, but what has to be true is what they heard in between the singing and the "All done". So I taught my kid to pee in the drain. What's the big deal right? Like I'm really gonna get out, get cold, soak the floor, sit her on the toilet for 10 minutes for her to tell me she doesn't have to go anymore and that she wants a marshmallow. Get real. Well now she really likes to pee in the drain and wants to go in the shower to pee even when fully clothed. A bit of a backfire. But I digress. I think the shower convo went something like this:

Abelle: Mom I have to poop (she always says poop for any bodily function, what she usually means is pee).

Me: Okay go in the drain

Abelle: Mom I have to poop

Me: Yeah, OK, go ahead

I turn a few minutes later to see that she has in fact pooped in quite a few places in the shower.

Me: Ah, curses

Abelle: curses

Then I think she sang me the cleanup song while I handled it. Then she nursed her baby. I saw her earlier walking around with her shirt off pinching both her nipples. I asked her what she was doing and she said "I pump yike mom". She also announced to everyone in earshot of us in a restaurant "Be careful of mommy's boobies". Fantastic. What can go wrong when I have her looking out for me like that? She walked by me tonight smiling and said, "Mom, I make you so happy". Darn right she does.

3 weeks old!

"Baby needs to want her paci" says the helpful big sister

Where did she get this dainty, petite body?

The Dr. is in. And she's the one naked for a change.

Well today was full of great things. We woke up to Anabelle singing as usual. She not only sings herself to sleep, she sings herself awake. And the coolest part about that is that she sings every song she knows at the same time. They all run together to form one song:

"I yove Daddy he yoves me. We yove Mommy yes siree. She yoves us and so you see, A B C D F G 6 7 8 9 10 L M N O P Q R's S T V W S Y Z Now I know my A B C D F G yike a diamond in da sky, one for the master, one for Daman (like Uncle Daman rather than dame) and snapped that monkey right out of that tree."

It does vary since her list of songs has now grown to about 20. But in each version somebody gets snapped right out of a tree.

Then we got a knock on the door and it was the nurse administrator in charge of housing. I told her yesterday that we would be all moved out this morning so as soon as I saw it was her I said, "We're almost done, we'll be out in a minute". But she smiled and I saw behind her that she had Lila with her in a cart with all her monitors and equipment. She was wondering if it was okay if she stay with us for a while during the admission of several new babies. Um, are you kidding me? So we got her all to ourselves for the first time as a family. I wouldn't put her down and took like 22 pictures of her doing the same thing (nothing) and looking like an akward fuzzy newborn. An adorable akward fuzzy newborn. And I had Braden dress her and accessorize her in new outfits. And Anabelle shoved her pacifier down her throat a bunch of times and laughed at her naked bum during diaper changes. She also reminded Lila to say excuse me every time she burped. I can tell they're gonna be tight.

Then we met with a guy who trained us how to use the monitor she will go home with. He used the word "mash" instead of "push". He kept saying it and I wasn't sure what word he would have used in any other state. So when he tested me about certain things I may have been a little excessive with the "mashing" of the buttons. Braden told me later that all he meant was push. Oh. So that's all he wanted me to do huh. Why didn't he just say that? He also said "cut it on" and "cut it off" instead of "turn it on". This is a southern thing. But what is it about? Who knows, that's a whole other issue to be explored at another time.

The hospital decided since we're looking at going home at the end of the week, it didn't make sense to have us go home and then come back the night before we take her home (they have you keep the baby in your room the night before just to make sure everything goes okay). So we get to stay. And hopefully for only a few more days. I am one happy girl.