Over the weekend..

Ahhh Anabelle, what a sweet smile on that darling little face. Now picture that little face shrieking and screaming. Add to that picture flailing arms and stomping feet and noodly little body being thrown about every which way. And then crying- unstoppable irrational crying. For those of you who missed Lila's blessing on Sunday, don't feel bad, so did I. I heard the first sentence. It was a lovely sentence. And then came the hysterics. I was trying desperatley to get her to calm down and be quiet. I was doing everything I could think of short of beating her right there in church. I did briefly consider it. I even thought of a scripture to justify it. Finally a friend realized that Anabelle was the screeching load of fun and took her out. So I heard the last sentence too. Oh the anger. Luckily Braden's mom was there and took notes so I got to read it. But oh the anger. I told her a few minutes later that she was not to talk and yell in church. "Why not"? This is what the congregation heard her chant about 12 times as I carried her out. An untimely tantrum to say the least. Such displays of behavior are what give poor two year olds such a bad rap. So to all those toddlers who sat quietly coloring or thumbing through a book, I apologize on her behalf. She's usually delightful and quite hilarious. I have since vowed to move back a few rows. Like 30 rows. Like we will now take up Sunday residence against the back wall. And if a similiar event ever occurs I could perhaps duct tape her to the wall. A solution that was unavailable to me this week. Just trying to keep my options open.

Moving on to less painful stories...Lila had her first party on Saturday. Friends from church threw a little celebration party for her. It was so nice. I mean stuffed grape leaves and shrimp sort of nice. I felt so overwhelmed while I was opening presents. I started crying. I mean really, who cries at a party? I guess if the party is really lame and your boyfriend leaves you there to walk home or something. It was just another moment of realization that our family is being taken care of and that the Lord is aware of us and meeting our needs through the generosity of others.

Additionally, yet completely unrelated, I have a bowl of overripe bananas on my counter waiting to be made into something great. Something more than just a substantial dose of iron and potassium. If you have a recipe for something banana that will be so delicious that Braden will make terribly stupid deals with me if I will just make him another batch, please consider yourself morally obligated to post it here.

Going the distance...

August 21st, 2002: I met Braden in the hall at SVU. It was a few days before classes began. The moment falls far short of anything magical or telling. He asked me if I knew where Col. Lowe's office was. I think I said something like, "No, I don't know where anything is". It's possible that I may have said it in a fun and flirty voice accompanied by my best 'you should ask me out' smile (would I really have just answered his question without at least trying to let him know he was the hottest guy in school. Ever?). I think all girls have one of those smiles. Although, not to fret, I don't use mine anymore. Now I use my 'you should take out the trash' smile. Seems to be slightly less effective and tantalizing. Maybe if I wore lipstick? Anyway, neither of us ever dreamed in the beginning that we would ever be more than something to pass the time. Braden came along completely unplanned, enexpected and even unwanted. Sort of like a teenage pregnancy I guess. But much cuter. And now he's all I want. Two years of ridiculous dating, four years of marriage, two kids, nine moves, six cell phones, 47 plates of nachos, and countless gut laughs later- here we are. Here's to forever Brade, there's no one luckier.

Be still my little heart...

I spent the day at Children's Hospital today. Every time I go there and look around at the other kids I leave feeling so grateful for our "problems". Her neurologist said that the EEG from today is an improvement from the one a few weeks ago. He said the last one was bad and he was glad to see it look better. Her brain activity is still abnormal; he sees the "spikes" that occur right before a seizure, although he did not see any seizures during the test. The B6 deficiency theory doesn't really check out as I had hoped, although I do still have to supplement her because she is low. She has epilepsy but we are unsure about what kind or what to expect for the future. Hopefully it will be a childhood case and will go away. The doctor can't say for sure, but he believes they are benign, meaning that she has a good prognosis. If she has one more seizure she has to go on another medication. She is otherwise thriving and growing. She weighs 10 lbs 8 ozs (she was born at 6 lbs 12 ozs) and is starting to get the fat creases, which I adore. Which is pretty incredible considering she pukes up at least half of what she eats. She is grinning and smiling like a champ. Everytime I look at her she grins and coos and melts my little heart. She has such a happy personality. I mean would you still be smiling if someone forced you to wear that ridiculous hat?

Seeing Attle

Wow that was a long time to leave the blog on a bit of a downer. Especially because plenty of great things have happened since then. We spent a week in Washington for Braden's brothers' wedding. I'm not sure that we have ever needed a break from our lives more. We sort of hid out from reality for a week and it was good for us. I told Anabelle we were going to go to Seattle and while we were driving there she said, "We're seeing Attle Mom". Lila got to meet the Reynolds fam and we got to be dry all day. What's neat about that is that we got to decide- if we wanted to be wet we could take a shower or go swimming. Otherwise, we got to be dry. Whoa- that is huge and excellent for those of us residing in the soggy south. The wedding was beautiful, the weather was dynamite, our family is a hoot, and we happened to get the chance to see two very good sets of old friends. One of them had their first baby while I was there. I appreciate that.

Lila did have two seizures while we were there which was very disheartening for me. I had mostly convinced myself that we were out of the woods so I felt a little discouraged to be re-entering the mess of doctors and hospitals again. I called her neurologist who said that he received a test result last week indicating that Lila's pirodoxine levels (vitamin B6) were low, and that can cause seizures. I hadn't taken my prental vitamins last week just because I was out of routine and forgot to take them out of my suitcase. B6 is something you get from diet and is passed thru breastmilk so that makes sense. I have to crush some up and give it to her in a bottle each night. I'm taking her back to Childrens hospital on Monday for another EEG to check things out.

Last night I went to bed around 11. I woke up around 6. Get it? Lila slept through the night, bless her sweet little soul. I do not think I just got lucky with a good sleeper. I have reason to believe that a certain toddler exhausts her. Anabelle shrieks, " Oh Mom, Baby Lila's sleeping!" the second her eyelashes flutter. The next second they are wide open because they have grubby little paws poking them or "drumming" her belly while singing her a "lullaby". I noticed yesterday that Lila often cries at the sound of Anabelle's voice. We're working on the meaning of "gentle" at our house. If I tell her one more time to "be soft" I'm going to start poking myself in the eye.

The other fantastic update in our lives, and by far the most important, is that we have discovered the most scrumptious treat ever. Braden makes fun of me regularly for my overuse of the word "ever". But in this case I feel that even he would deem it at least appropriate, if not necessary. Without further delay: Publix premium low fat frozen yogurt in cool mint spooned out by chocolate animal crackers. If you try it and don't become a huge fan please drop yours off at our house.

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.

We were told this morning that we can longer "room-in" at the hospital. The NICU has begun to fill up (Lila has been flying solo a lot of the time we've been here) and there is not room for all the moms to stay. Since one of the moms complained, the two of us that were staying have to leave. This has been so hard for me today. I guess it came at a time when I was already arriving at officially being frustrated. I am tired of asking permission to see and hold my own baby. It has been hard for me to feel like her Mom or connect with her or get to know her. So last night I went to feed Lila and Braden came with me so we could try to get a video of one of her episodes to show the doctor. A well meaning nurse began giving us a little unsolicited parenting advice. She thought we should consider going home because it would be in the best interest of our other child. I am glad Braden was there. He was a lot more gracious and pleasant than I would have been. Otherwise she would have gotten the tail end of my sleepless, hormonal, emotional, Mama Bear wrath. I hesitate to even record these feelings at the risk of sounding ungrateful-there really is no way for me to ever express how appreciative we are that we've been able to stay here and for the care she's recieving. To say nothing of the endless support and help from so many friends and family. But for authenticity's sake it has to be said that this is wearing on me. I was griping to Braden that the nurses were being careless with my store of breastmilk and wasting so much of it because they said I have so much in the freezer. So I started hiding it and taking it home to my own freezer so they wouldn't think I had so much, and appreciate it for what it is (pretty much liquid gold in my book). I know that I really don't care about any of these things. I don't care that we've lived in a hospital, that I eat frozen burritos and Slim Fast for every meal, that Anabelle sleeps in the shower, that Braden and I share a twin bed (thank goodness for guardrails). I don't even care that the doctors can't tell us exactly what's wrong with her or when she will be better. Underneath it all I just feel sad not to have my baby. That's all. And with Braden's schedule and the times that we are allowed to see her I can't figure a time when I can nurse her unless I come in the middle of the night or at 4 in the morning. I feel sad at the thought of seeing her once a day and going home to our lives while she is at the hospital in a plastic tub.

I met with the doctor tonight. He still is not exactly sure what to diagnose her with. She has fallen outside the norm of any label they could give her. We are not so concerned with that, just that the dangerous behaviors stop. He feels that she made progress over the weekend. She will cry when she is hungry, stays alert and awake for longer periods of time, is gaining weight and keeping herself warm. He also feels that her tone improved a bit and she also passed her hearing screening which she originally failed. All good. Now, if she would just breathe. Like all the time. We distinguished her "de-sats"(desaturation-not having enough oxygen in her blood) from these seizure-like episodes that I keep seeing. I wasn't sure what was going on (he is still not sure) and was wondering if they were counting these as "episodes" that keep her from going home. Frankly, they scare me and I didn't really want to take her home doing it. He is looking for her to have 5 days free of desats before she can go home. He is not so concerned with the episodes I have been concerned about. He believes she has some obstruction and positional issues where her tongue ecludes her airway. Or he thinks sometimes it may be food coming back up. Because I recognize when it is starting to happen and how to handle it, he is willing to send her home with this continuing. He believes she will grow out of it. If she doesn't or needs help coming out of it, I have to bring her back. Last I checked, she has gone two days without having a desat. That means he is looking for 3 more solid days and then we can take her home. When we do go home she will go with her monitors which she has to wear around the clock unless I am bathing her. It is essentially an alarm that will help catch any periods of time where her vitals drop low enough for a certain number of seconds. It is expected that Braden and I will know how to give her CPR if needed, so we will need to take that class before they release her. We had to do that with Anabelle too. So after meeting with him I feel better. I'm trying not to plan on Friday because I can't go through that let down if she doesn't make it. But I am happy for the progress and hopeful that she'll keep it up. I think the medication is helping with the pain she experiences. I asked him what the plan is if she doesn't quit having desats and he said "growth and time". He feels that patience, wisdom, and time are the best things for Lila. The surgeries he discussed with us last time are very risky and he doesn't feel they are right for her. He will have her wait it out in the NICU for quite a while before he'd be willing to do that to her. So let's hope the next 3 days go as well for her as the last 2 have. I know that many people fasted yesterday on her behalf and I don't believe it's a coincidence that yesterday is when she started improving and hasn't had one since. It means the world to me to have felt loved and supported by our ward here and friends and family all over. I'm not sure how we'll ever be able to express our gratitude to all who have blessed and served us in so many ways. We hope to be able to return that and be as generous and compassionate when given the opportunity.

Still waiting...

Well we met with another doctor today. He came in our room, pulled up a chair, and said, "I don't know. I just don't know." He gave us all the possible avenues he's considering taking of where to go from here. He's giving her the week to sort of pull things together on her own before he transfers her to Children's Hospital in downtown Birmingham. Although the doctors are the same, the hospital has the capacity to do more in-depth, specialized testing. He mentioned the possibility of putting a trach(?) in to make her breathe through her throat rather than her nose. We're of course hoping we don't get to that point and that she pulls things together on her own in the next few days. The last four times I have gone in to nurse her she has turned purple and started shaking in my arms. It is hard for me to see. I came back to the room this morning and was telling Braden (in a choked up voice) how it broke my heart to watch her like that and that I don't want to see her like that again. Anabelle stopped playing with her toy, walked over to me, hugged me, kissed me, and said in a soft sweet whisper, "I'm sorry Mama." It made my heart feel a lot better.

I was reading in the Ensign this week a quote from Ruth May Fox that I instantly identified with and loved:

"Ever since I could understand, the gospel has meant everything to me. It has been my very breath, my mantle of protection against temptation, my consolation in sorrow, my joy and glory throughout all my days, and my hope of eternal life."

This really does describe perfectly how I feel. I am so grateful for the peace the gospel brings into my life.

What a rollercoaster...

Okay so I jumped the gun a little. Maybe. I talked with the doctor this morning before leaving to take Anabelle swimming. We were discussing how Lila was making progess and doing so much better. She said she felt like we could attribute that to the medication and was going to put her on a higher dose of one of them and a more potent kind of the other to see if it would completely clear up the problem. But when I called a few hours later the nurse told me she had 8 or 9 episodes already and that they were more serious. Lila was very pale and they were taking blood to the lab for a CBC (complete blood count) to see if she had enough blood since she has had so much taken for so many tests. They were also wondering if she has an infection that would cause that reaction. But again the tests came back okay on both accounts. A few minutes ago when I was holding her she turned dark purple and started shaking and her eyes went glossy. It looked like a seizure. The nurse told me this can be what babies look like when they are choking and that it is very hard to distinguish between choking and seizures. The doctors are considering doing a 24 hour EEG on her since nothing showed up in the previous EEG but things don't seem to be adding up just right for it to be only reflux. What doesn't fit with the reflux is the staring, glossed over eyes. They are also thinking that once the higher doses of medication kick in, that could do the trick since she gained a good bit of weight this week and the previous dose may not be effecting her like it needs to. So the bottom line of all this rubbish is that we still don't know. Sigh.

In other news, we have pretty much the coolest kid on earth to take to the pool. Like previously mentioned, Anabelle puts on her floaty suit and swims laps all over the pool by herself. She dunks herself underwater and begs Braden to throw her high in the air without catching her. Her new trick is to climb the ladder to the top step then let herself fall backwards into the pool where she dunks underwater and comes up smiling. All this while I tan and eat her snacks. What a hoot she's turned out to be.

Wahoo!

Things are looking up for little Lila. She has now been completely off the warmer for over 24 hours and is holding temperature. She got moved to an open crib which means we get to hold her now as long as she's bundled like an eskimo. And who wouldn't like to snuggle an eskimo? She also went almost 24 hours without an episode. As I was discussing this with the nurse and oozing and gushing with joy and excitement, she had one. But it was short and mild and she came out on her own without needing oxygen. She also had another one later but 2 is better than 8. But I'm feeling pretty darn happy with the progress she's making. I think I see an end in sight and hope she continues to improve at the rate she has in the last two days. I'm concocting plans for a big pink welcome home party with lots of funfetti cupcakes. But only for like an hour because I'm really tired.

Pushing my buttons...

Meet the newest Who in Who-ville

Anabelle puts this suit on and swims the length of the pool by herself the whole time we're there. And then she takes a 3 hour nap. It rocks.

MaShay is so cool.

Well the good news is I have learned to sleep sitting up since Anabelle broke my hospital bed into the upright position. She did this by pushing all the buttons on the bed about a thousand times. I pushed them all about a hundred times and then gave up trying to fix it. Now I don't have to struggle thru anymore sunday school lessons, I can just take a discreet little siesta sitting straight up. Excellent.

The neurologist said Lila's EEG and MRI were normal. She did order some tests that check for neuro-muscular disorders because she felt that Lila's tone is not what it should be (tone meaning the amount of muscular resistance she offers). The tests are specialized and take about a month to come back. These test results are the only ones outstanding-everything seems to be checking out ok. Which is a catch 22, we don't want them to find anything, but we also don't like having the "mystery baby". They have started her on two medications for reflux and I think maybe it is making a difference. It's early to say but in the last day and a half her episodes have been both less frequent and less intense. She was having them 6-8 times a day and she had only about 4 yesterday. Also they turned the warmer down to 25% and she has been able to hold body temp since yesterday morning. I am so excited about that. We are of course still hoping and praying that she will just mature out of whatever is causing these struggles.

Since it has become apparent that we will be here a while the doctor urged me to get out of the hospital. I'm not sure if she said that for the sake of my sanity or hers (it's possible that she hears Anabelle scream -singing "Tinkle tinkle yittle dars" all day and night). Either way I have gone home for a few hours the last few days to swim with Anabelle and try to establish some normalcy for her. It has been good for all of us. We are so grateful to Braden's sister MaShay who came last week to help with Anabelle.

We continue to feel so blessed and overwhelmed by love & support. We especially appreciate the prayers on our behalf and want you to know that I literally feel strengthened and carried by them.

The latest...

Not a ton of news on our front. Lila had an EEG this morning and an upper GI test this afternoon. We have to wait on the results of the EEG until Friday when the pediatric neurologist can meet with us. The GI test was to check if she has reflux and also to make sure that everything in that area is anatomically correct. Those things appeared to be ok. She did not reflux during the test but her stomach was slow to empty so they started her on reflux medication anyway, just to see if it might make a difference. So by process of elimination, we'll get there soon hopefully. She has her episodes more frequently now and she requires oxygen. There is no pattern to when she is doing it- she just doesn't breathe. The doctor said she is a mystery. We really feel confident that they will figure it out and things will start to come together. In the meantime, we are feeling so thankful for the medical care & technology available to us that has so far saved both our girls. What blessings we have been given. Not to mention the limitless supply of ice chips.

The pics above are from the birthday party we threw for Lila last week in hopes that she would want to be birthed. It clearly worked and I highly recommend it. Or what may have happened is I couldn't resist the box of funfetti cake mix another day and I didn't know anyone under the age of 5 having a birthday anytime soon so....Plus the only way for Lila to get her birthday cake was for me to eat it and pass it along. I hated to do it but there are just no limits to the sacrifices a mother will make for her children. Anabelle seems like sort of a food snob. She got that from Braden. She wouldn't eat the cake but she did pick every dot off the top.

Did I spell my own kid's name wrong?

Lila is a week old today. We are still unsure about what is causing her struggles. The Doctors said over the weekend that they would like to give her some time to mature and work it out on her own before they subject her to a battery of invasive & exhaustive tests since she already seems a bit overwhelmed and fragile. We are closing in on the period of time in which if she were going to "grow out of" the behaviors she exhibits, it would be within the next day or two. She had brain and heart scans yesterday which check out okay, at least in preliminary reports. She will have her chest scanned this morning. She had two episodes where she turned blue yesterday while I was nursing her and two more during the night where she required oxygen. Every time this happens, the go home count starts over as she has to go five days completely clear of any incident before they will release her. She failed what they call "open crib" yesterday, which is to say that they took her out of the warmer and off the IV to see how she would do, and she could not maintain adequate body heat on her own so she went back in after an hour. She is off the IV though and off phototherapy for her bilirubin scores. It is a 'one day at a time' sort of situation we have going on here.

So the universal feedback has been that we should have spelled Lila with a Y instead of an I. Um, I gotta say I still feel good about it. Braden says everyone will say "Leela". That's ok. That's when I'll say "It's LIla". They will also say "how old is your little boy?" even when I have her in a pink dress with an outrageous bow in her hair. And I will say, "Oh he's 1 month". Braden decided on the spelling of Anabelle and in 21 months not one person has spelled it right. I'm ok with that.

Lila has been dubbed "sweet girl" by the nurses here. She really does have such a strong presence of love and sweetness. She has such a gentle demeanor about her. Hopefully we'll take her home soon so we can catch up on lovin up on her.

So here I sit in my room at the hospital outside Lila's NICU unit. Anabelle is having her 5th sleepover of the week with someone new from church. Braden is at work and I'm just thinking things over. When Braden kept talking about getting married I was full of doubts and concerns about us. I wondered about a lot of things about our relationship. The thing in my mind that I always felt so strongly about was what kind of Dad he would be to my children. This was actually one of the factors that carried us through until I worked out all my other concerns. And now we have been blessed with two little girls. I always joke with Braden that we will end up with 7 girls (however after recently experiencing childbirth we may not make it quite to 7). But I tell him this because he is such a tender and sweet Dad and he's the kind of guy that should have little girls. I am thankful everyday for the kind of father and husband he is. He has been an amazing support to me this week and I am so thankful for his tender love and care for our little girls.

Real Life Superhero!

Lila Kristine Reynolds was born on June 10th at 5:27 pm. Julie was awesome and we didn't have to do another c-section!!!! We are so happy to have her and thank you all for your love and prayers. Come see us!

Reflections on Christ

A few months ago someone sent me this link in an email and I have watched it a few times since, particularly when I have felt down or needed an uplifting feeling. I thought I would pass on the love. This song is dear to my heart, especially the last part that says "...here's my heart Lord, take and seal it, seal it for the courts above". That is the feeling this song (and the videos with the beautiful portrayal of Christ's life, death, and resurrection) leave me with- which is the desire to give my whole heart to Him and rededicate myself to His service.


http://mabrystudios.typepad.com/reflections_of_christ/2008/03/reflections-sli.html

I am my Mother's daughter...

Ok so if you know me at all you know how it absolutely lights me up inside to find a bargain. I mean I have done a few thrilling things in my life- bungee jumped, rapelled off high bridges and mountains, rock climbed equipmentless (ok that was idiotic-not thrilling), white water rafted, cliff diving, etc. I have to say that I feel totally okay about comparing these activites with the feeling I get when scoring a great item from the 80% off rack. So you can imagine the elation I feel when I see a whole store going out of business- I just bubble with the anticipation of the stuff I'm going to suddenly need and find all in the same moment. So there I sit in a church meeting the other day and my friend leans over and asks me if I've heard (because I've been out of town for 3 weeks) of this grocery store going out of business. My heart starts thumping, my palms get a little sweaty, I'm feeling distracted to say the least. I begin to plot about a time to go when Braden can break sticks with Anabelle because surely this is no place for children. So I went three different times before the store finally closed. And my what treasures! Aside from the fact that the majority of our spoils were food, we also managed to score some pretty rockin household necessities. I mean stuff that is sure to invoke all sorts of jealousy and envy. I won't list them here in this public domain among friends and loved ones, but I will say those of you with June & July birthdays-now is the time to rub your little paws together in great anticipation.
This is Braden with the fabulous fowl we scored from our sale. You may have been disctracted by the coolness of his tie-dyed shirt, but I would hate for you to miss the pride beaming from his face as he realized that he cleaned, prepared, cooked and carved it all by himself. We decided to have a Thanksgiving dinner in May. It turns out it's okay to be grateful all year.