Lila's Crazy Hospital Adventure

I realize it has been a super long time since I have blogged anything but I think it is time I get back into it. Hopefully I will be able to post more often but we will see with school and family and well, the rest of life..

  I wanted to share a major event that happened recently to our little family..

  On August 30th little miss Lila came down with a pretty high fever.. Now as most parents know, children get fevers, often. I decided I would go to my math class that evening and see how she was doing when I got home. She stayed with Hercules and I called on my way home only to hear Lila screaming and crying in the background. As you may know from my previous post, Lila has something called VUR and when she gets a fever she has to be seen right away in case she has a UTI. After a call to my mom for some more experienced advice we decided to take her to the emergency room.

   When we got to the ER they sent us into a room and did a catheter to see if it was indeed a UTI. The results came back normal and they sent us home and told us to see our pediatrician. The next day she wasn't eating or drinking anything and we began to get a bad feeling about it all so we took her to see her doctor. They did another catheter and checked her ears, nose and throat. Once again, everything came back normal. Our pediatrician told us to come back if the fever was still there in 5 days. Since she was not drinking anything we were told to force her to drink out of a syringe until she would drink on her own. After about 24 hours and on the brink of dehydration Lila finally started drinking on her own. We made it through the rest of the weekend with a lot of tylenol, Bubble Guppies (Lila's favorite show) and a lot of sleep.

   Tuesday came and brought a fever along with it. Now when I say fever.. I don't mean like 101. Her fevers were getting as high as 103. The strange thing was that it was her only symptom. We took her back to a new doctor as her's was out of the office. She seemed very confused and decided to run some different tests. Lila had her nose suctioned out with this crazy machine and then had to have a chest x-ray.

   Hercules took her to do the chest x-ray as I was already getting drained watching her feel so bad. I waited in the hall and could hear Lila screaming "MOMMY, MOMMY!" it was one of the most heartbreaking things I've ever heard. After all of that we had to take her to get some blood drawn. I just have to say, I have the sweetest little girl ever. After they drew her blood she said through streaming tears "Thank you, Sorry." to the nurses.

   We took her home and waited.

   The fevers continued and on Thursday her doctor's office called to give us the results of the blood work. She said there were a few things that were unusual and that she would talk to the dr. to make sure it wasn't anything serious. After a few hours of not hearing anything I called the office back because Lila's fever was up to 103.2 again. The nurse told us the doctor wanted us to go to the ER immediately for more tests. Now, hearing your dr. telling you to go straight to the ER is very unsettling. We had no answers, not even "it could be.."

    We took her right to the ER and had a 2 hour wait to even be seen. Once we were back in a room one of the doctors came in and basically told us they would need to do more blood work and that he would consult with the on-call pediatrician. We waited and waited and finally they came to give her an IV and draw some blood. We have been through this process before and trying to give a baby/toddler an IV is really hard.. it usually takes 2-3 times to actually get one to take. After two tries we finally had success.

   The pediatrician came in and told us that it could just be a virus but that it us very unusual for them to last longer then 5 days. He mentioned something called Kawasaki's Disease was a possibility although she really didn't fit the symptoms (more on that later)

   We were told that her white blood cell count was at 30, up from 20 the day before. An average white count would be somewhere between 6-14. They knew she was fighting something but the problem no one could seem to solve was what it was.  They did more blood work and another catheter to officially rule out a UTI. After about 10ish hours in the ER we went home with instructions that her regular pediatrician would call us in the morning with results.

   Friday morning we got a call around 9:30 from the pediatric office. We were told that Lila needed to be admitted to the children's unit at the hospital. This was not the news we wanted and I really started to get worried. If the doctors were worried, something was wrong.

  When we got to the hospital we were greeted by a bunch of amazing nurses and a new pediatrician. At this point, Lila was terrified of anyone in scrubs or pretty much anyone she didn't know. It didn't help that they all had to wear masks and these horrible yellow gowns because they hadn't ruled out something contagious.

   They gave Lila a new IV and decided to do an ultrasound of her kidneys to make sure there wasn't an infection that they weren't catching. Well the ultrasound came back perfectly normal. They had sent the urine from the night before for a culture. They drew more blood and at this point were fairly sure that she just had a UTI that wasn't being detected so they started her on IV antibiotics.

  This is where everything starts blending together...

   Over the next 3 days she had fevers, IV's, blood drawn, and another nasal swab because they messed up the first one.

  By Saturday night the urine culture still hadn't grown anything and by this point none of the 11 or so doctors knew what was wrong with our sweet girl. They referred to her as the "mystery child", which was not very comforting for us.

  This was when we heard the diagnosis Kawasaki's Disease again. But this time it was much more serious.

  A brief explanation of Kawasaki's Disease: A rare disease (1 in 100,000). Unknown cause. Causes the arteries to swell and may cause anyeurisms. Children may experience heart attacks around age 2-3.

  The problem was, Lila didn't fit all the necessary criteria for treatment. Kawasaki's usually presents with all kinds of obvious symptoms. In 95% of cases children present with a rash, swollen red tongue etc. Lila had all the lab findings but that was it.

   Kawasaki's must be treated within 10 days of the onset of a fever or it is not effective so the doctors called the Infectious Disease office and a cardiologist and decided it was best to treat.

  The treatment is called IVIG. It is basically and IV transfusion of antibodies from 10,000 or so people. It is a blood product and a pretty serious treatment. Also high doses of asprin are given.

   We decided the risk of heart attacks and anyeurisms was worth the risk of treatment so we started her on IVIG Sunday night. Lila had some pretty awful reactions to it. She threw up, got incredibly tired and very irritable. IVIG causes headaches and migraines and we had to give her tylenol to help her feel better.

   Tuesday morning she had an echocardiogram to see if there had been any damage done already.. luckily the answer was no.

   We were finally sent home Tuesday afternoon and Lila is doing much, much better. She is back to her normal happy self. She has two more echo's scheduled and is on a small dose of aspirin everyday.

   All in all, Lila had.. 2 needle pokes in one foot, 1 in the other, 1 in her ankle, 2 in one arm, 2 in one hand, 3 in the other hand and 1 in the other arm. She had 2 fingers pricked, a throat swab, a nasal swab, a nasal suction, 2 chest x-rays, 3 catheters, countless blood draws, and an echocardiogram. After every single one of those she said "Thank you". She said please for everything and was the bravest person I know. By the end of all that I couldn't help but cry, I was so drained of all my energy, trying to stay happy for Lila and making sure she wasn't so scared. Even I couldn't handle all they put her through and she did it all. I think she knew we were trying to help her even though she couldn't understand what was going on.

   I am so thankful everyday for Lila and my family. I am constantly reminded that it can all be taken away in an instant. I am also incredibly thankful for the countless doctors and nurses who took such good care of us and also for modern medicine.. without it my little one may not be here to grow up.

First Snow/Lila's New Room

It's been a while since I blogged but it has been a pretty busy month. We moved back to Utah and are now just trying to get back into some sort of routine. Hercules is looking for a job and has recently applied to the Unified Police Dept. but it will still be a while until we find out about that.

But anyway...

  The weather has been quite an adjustment for us and last night we finally got a nice big snow storm so this morning we decided to take Lila out to play in the snow for the first time. We got her all bundled up in her new snow suit and hat and plopped her down. She didn't quite know what it was all about at first. She tried to eat it and then face planted. She kind of reminded me of Randy from A Christmas Story because she couldn't move her arms and when she fell over she would roll from side to side but could not, for the life of her, get up. We laughed pretty hard.. then helped her up. :) After about 30 minutes she was done and bored of the snow so we came inside to warm up, but of course I got some cute pictures!

Lila's New Room

So even before we moved home I was planning Lila's new bedroom. I was so excited, I repeat, SO EXCITED, for Lila to finally have a cute room. When she was born she slept in my room with me and then when we moved she had her own bedroom but we could not paint or really do much decorating (we couldn't even hang curtains) so when I found out Lila could have her very own room with fresh paint, new carpet and basically anything I wanted I was ecstatic.

 The first thing I did when we got home was start on her room, when I say the first thing, I actually mean the first thing. I started her room before I even started unpacking.

  A neighbor we had in California told us about how you can use cornstarch and water to hang fabric on the wall and then you just get it wet to take it down. I of course loved this idea and immediately started planning a mural.

  For those of you that know me, you know I have a somewhat unhealthy love of vintage anything, mostly I have a love for vintage flowers and fabric. While in California I bought a fair amount of vintage fabric and even got some from an antique shop on Cannery Row. I decided to cut the fabric into big flowers and use them in the mural.

  I found an old wooden picture frame that belonged to my grandpa and kept a picture of John Wayne very safe.. but no one here shares my grandpa's obsession with John Wayne so we tucked the picture away and I reused the picture frame in my own way.



I also found an old lamp that needed some updating so I recovered it and made some flowers to attach to it. Unfortunately I forgot to take a before picture but it was green, white, and blue stripes.

I made some letters to hang above her bed..

Here are pictures for the (mostly) finished room:

This was my dresser when I was little but it was all black with silver knobs

paper flowers

reading corner

Well there you have it! I can now focus on starting a new project. Next on the list is a new dress for Lila!

Little Bug At The Beach

Since we only have 2 weeks left here in Monterey (it hurts my heart to say that) I decided to take full advantage of my Saturday. Hercules and a couple of his friends wanted to go run on the beach so I decided to tag along and invite one of my friends and her adorable kids. We got all packed up and headed to our favorite beach spot and set up our blanket. 

I was worried about taking Lila since we haven't taken her since she started crawling. I thought for sure it would be a nightmare... and sure enough I set her on the blanket and she headed straight for the sand. I held her up so she could put her feet in and tried my darndest to keep her hands and the rest of her body sand free. After 20 or so minutes of my best efforts I just gave up.. I decided to let her win and have her fun so I plopped her down right in the sand, she didn't move from that spot for over an hour. She just kicked her feet and picked up sand and played with it. She was so happy and perfectly content. I was completely shocked that she didn't try to eat the sand (we have been at the "put everything I see in my mouth" stage for a couple months now). Lila even talked to the sand.. that's how you know she's the happiest, she talks to things..it's strange, but incredibly endearing.

After all this time of enjoyable beach time curiosity finally got the best of our little bug and she decided to lay flat on her stomach, mouth wide open and tongue all the way out and she came up with a mouth and face full of sand.... I was worried she was disgusted but she just laughed and licked my hand to get the sand out of her mouth. We washed it down with a bit of water and I decided it wouldn't kill her and would probably just help out her digestive tract.. I mean I have heard animals eat rocks and stuff for that right? Well either way that's my story and I am sticking to it :).

After about an hour and a half Lila ventured from her spot and crawled all over the beach. She loves the sand and it showed. She had sand everywhere, no doubt I will be finding it all over for the next week. Needless to say, we had a great time and didn't want to come home but we all needed some food and a nap!

These are the days I can't imagine my life without my little wing lady. Things like going to the beach make me feel like a kid again, I really think having children is the best way to "relive" those childhood years. I'm sure it will only get better with time. I am so grateful and so blessed to be Lila's mommy even when I have to clean sand from her ears, mouth, hair, diaper and everything else!



Photo: Courtesy of Morgan Slade :) Thanks Lady!



Four Day Weekend

Well what started out as a promising and fun filled weekend; Friday the 13th ended up not being so kind, actually very very cruel.

Friday we went to a place called Point Lobos in Monterey. I took this off the website because they explain it way better then I could.

"Point Lobos State Natural Reserve is outstanding for sightseeing, photography, painting, nature study, picnicking, SCUBA diving, and jogging. In addition to the spectacular beauty, nearly every aspect of its resources is of scientific interest. There are rare plant communities, endangered archeological sites, unique geological formations, and incredibly rich flora and fauna of both land and sea."

It was such a beautiful day, the sun was shining and it was very warm. We were in the company of some great friends and we even got some sandwiches from Subway to eat on the rocks while we looked at the magnificent views. After lunch we walked around the trails and I took way too many pictures. This has to be one of the prettiest places I've been to and the photographs don't do it justice.

I officially thought we made it through our Friday the 13th unscathed....until Saturday night when Hercules and I both got sick, with food poisoning, from the Subway that we ate on Friday. Thanks to Subway we spent the rest of our 4 day weekend sick and on the couch.

I guess all our weekend plans will need to wait for another day.





Another Doctor Visit

Well poor little Lila Drew has had a fever of almost 102 degrees for the past two days. For most other people with kids; it's just a fever, you watch them for a bit and make sure everything else is fine. You may decide to make a doctors appointment and you go from there. This is not the case with our little one.

Lila has Vesicoureteral reflux (VUR). Because she has VUR we have to be seen by a doctor within 24 hours of a fever with no obvious cause to make sure she doesn't have a urinary tract infection. I know I have said something about this in a previous post but VUR usually isn't a huge deal. Grades I-III usually just mean antibiotics everyday until it clears up on it's own. Not for us, Lila has grade II on her right side but grade IV on her left.



shows the ureter and kidney



VUR is when the urine from the bladder flows up through the ureter and back into the kidney, this doesn't do any harm unless she has an infection, but VUR makes children more pron to infection.

 Her last infection was so severe we know it already irreversible damaged her kidneys. Any future infection would do the same.

Because Lila's VUR is so bad we had to be referred to Stanford Pediatric Urology where we were told she HAS to be on antibiotics everyday, no matter what. That if she even misses one day she could get another UTI. The doctor told us she needs to be seen at 1 year old to have another ultrasound of her kidneys, then again at 18 months to have another VCUG. The VCUG was the worst thing in the world and I don't want to do it again but after that test they will decide whether or not to do surgery to reimplant the left ureter to the right side of the bladder. They are hoping the right side just heals on it's own.

Hearing that your baby is just so fragile and may need surgery is pretty hard to swallow. She is just the happiest little girl and even when she is sick or in the hospital she tries so very hard to smile and laugh. She may only be 8 months old (today :)) but she inspires me. She may be tiny but she's a huge light in our lives and I am so grateful for her.

I keep telling myself after each dr visit that it could always be worse. She is still happy and for the most part healthy and for that I am thankful.

Now we just have to keep our fingers crossed that her results come back negative and this whole fever thing was a fluke!

On a lighter note HAPPY 8 MONTHS to my little girl:

Light and Shadow

Well as an artist of sorts I guess I need at least one post about my truest passion, painting. I firmly believe that everyone needs a passion; whether for art, for music, for dance, for food, etc.

For me, painting gives me a sense of purpose. Painting is the best outlet I have for any emotion I am feeling. It calms me when I am anxious or upset. To me art is a release, a way to translate what I am feeling into something tangible. Painting is my way to get away. Painting to me is extremely personal.

What started out as something I thought was just a hobby transformed into something much bigger. I first started drawing in 6th grade and took some after school art classes. Everyone told me I had talent but I have always been very insecure with my painting, because it is something personal that people criticize, when someone criticizes something you have put so much thought into it feels like they are pulling apart everything that you are. I didn't really do much with art for a long time but since moving to California, I have had much more time to pursue it. After much pushing and prodding by family and friends I started selling my paintings online.

eightyeightkeys on Etsy

Just last night I had started a painting on the largest canvas I have painted on yet and after painting the whole thing I decided it wasn't going where I had envisioned it would go. After staring at the canvas for hours on end I turned on Pandora (music is one of my greatest inspirations) a piano piece called "Light and Shadow" by Philip Wesley came on and I got lost in the song, by the time the song was over I realized I had just painted without even thinking about what I was doing. The brush strokes and the colors just came naturally, without a single thought about "Will it look good?" After painting and painting and painting and a few hours I finished around 12:20am. Technically speaking, this may not be the best painting, but to me, I put my heart and soul into it and so for that it is the best painting I've ever done. I could stare at it all day.. and I have.

"I don't think there's any artist of any value who doesn't doubt what they're doing."

-Francis Ford Coppola

 I don't know that I will ever be successful in my passion but it doesn't matter. I love what I do, I always will. I do what I do for myself and for no one else. I am overcoming my insecurities and learning that there will always be someone who doesn't like what I paint; and that's okay.. That is what art is all about, everything is open to interpretation, some people will appreciate it and find a meaning in what I do and others will not.

It's a Bittersweet Goodbye

Well, we've only got 32 more days here in Monterey.

For those of you who know me you know how much I miss Utah. I never thought I would miss home as much as I do. I miss my family and my friends and oddly enough I miss the mountains. I have been ready to move home since about.. well I guess my short trip back to Utah in August (I only moved here July 1st) but now that the time has come to move home I am feeling a little bittersweet about the whole thing.

And here's why:

This place is beautiful. It's January, there's no snow and it's a comfortable 65 degrees outside. I can wear short sleeves and dresses without needing to bundle up. I can go to the beach whenever I want because it's about 2 miles from my back door and we have an amazing view from our back window.

Monterey is such an artsy and cultured city. There is a farmers market every Tuesday and people speak every language you can think of, mostly because of the language school here.

There are farms everywhere just outside of Monterey that sell fresh and delicious produce. They have little stands that you can just pull of the road and buy whatever is in season for very cheap.

The beach is amazing and I feel so spoiled to be able to go whenever I want. Monterey Bay is full of wildlife and we have seen dolphins, sea lions and otters. The water is so cold I can't imagine ever swimming in it; especially since the bay is full of great white sharks; but it is so beautiful and there is something so amazing about laying down a blanket, getting bundled up in a sweatshirt and watching the waves roll in. We have taken walks along the beach and around the bay, built castles in the sand and dipped our toes in the water.

There is fisherman's wharf, full of sailboats and amazing restaurants.

There is Cannery Row full of shops and home of the Monterey Bay Aquarium.

  

Then there is Carmel. Carmel may be one of my most favorite places and I will miss going there whenever I want. There are adorable (and very expensive) shops that line the main street. There are artists who set up their easels on the sidewalks and you can smell the oil paints when you walk by. There are art galleries every where and I would be at home and happy there forever. There are beautiful views and amazing houses.

We have had the opportunity to visit San Fransisco, Big Sur and a redwood forest.

We have spent holidays here and had friends and family come to visit.

All in all our time has been well spent here and although I am excited to get home I am sad to leave this amazing place. I always think to myself when in a place other then home that I may never have the opportunity to pass this way again so I try to see as much and do as much in that place as I can. I think I have done that here and even though I will miss Monterey and all it has to offer, I can look back and say I didn't miss anything, I saw all that I could, met some great people, made so many memories and took more pictures then I should have. I think that makes it one pretty amazing adventure!

It's A Brand New Year!

Well here we are! It is 2012!

I have a good feeling about this year. My little family is faced with a lot of uncertainty in the next few months which is very scary but at the same time very exciting. When we face much uncertainty there are also endless possibilities.. let me explain...
Hercules has spent the last year or more in active duty military training BUT he is Utah National Guard which means when we move home he has no full time job anymore.. goodbye salary, goodbye housing allowance, goodbye free insurance, goodbye food allowance.. basically we go home with no income but my one or two paintings sold each month and one weekend pay from Herc's military duty. And yet... I am not worried. At all. Maybe I am in denial and don't want to face the reality of things but I really don't think so. I think this year will be a great one. This is where the endless possibilities come in. We can do whatever we want. Anything can happen and anything is possible.
 
The second purpose of my New Year post is of course the New Year Resolutions list. Let me preface this with the fact that I absolutely HATE this time of year. I never accomplish my resolutions and for the better part of my life I just didn't make any so I didn't have to feel guilty about not doing any of them. Also I always seem to set bigger goals then humanly possible to reach. However this year I am willing to try. So I am writing this in here mostly for myself because if I write it to the world I have to do it.. so here we go in no particular order:

1. Actually try to keep my resolutions longer then a week.
2. Lose 20lbs by Lila's birthday in May.
3. Be better at writing in Lila's journal (I write a journal to her so when she turns 18 I can give it to her, my mother did the same for me)
4. Be more patient (No promises there, I think that virtue will take longer then a year to learn)
5. Paint the biggest canvas I can find.
6. Start school (finances permitting)

Well there you have it. Now I am fully obligated to complete these tasks set for myself!

I wish all of you luck with your resolutions and I hope we can all have a fantastic 2012!!

Getting Started

I have officially joined the blogging world! This blog is just the story of us and our journey through life. I'm not really sure how to start this whole thing off so I'm just going to wing it with a little background of us.

My husband (Hercules) and I were married August 25, 2010. It was such an amazing day. There is nothing better then getting married to your best friend.

We planned on it just being the two of us, getting through school and Hercules getting through the military...But mid September we found out we were expecting a little addition to our tiny family! We of course were excited but terrified because this was not part of our plan and we didn't know the first thing about being parents! We felt totally unprepared. But as time went on I realized we would never be dealt something we couldn't handle.
Hercules left for basic training in Fort Leonardwood, MO on November 9, 2010. It was one of the hardest nights of my life. We hadn't been apart for more then a few days up until this point. Add the pregnancy hormones and I was a wreck. Luckily, Hercules got to come home for Christmas Exodus on December 19th and on December 21st we found out we were having a girl! We were so excited!
After 2 weeks home Hercules had to leave again, it would be another few weeks until I would see him again, but in February 2011 my mom and I went to Missouri and saw Hercules graduate and become an official U.S. soldier! It was such a great moment! The time we spent together was bittersweet because I knew we only got to see each other for a few hours before he had to leave again. His next stop.. Fort Huachuca, AZ. Fort Huachuca is about 15 miles north of the Mexican border. This is where he did is advanced training and I didn't know when I would see him again or if he would even be home for the birth of our little girl.
Turns out I did get to visit him in April for a couple days but after that weekend I knew I couldn't travel anymore because I was due in just a few weeks.
We knew we had to plan my labor around a weekend if we wanted any hope of Hercules coming home for it. This turned out to be much harder then we thought. At the hospital Iwas going to you cannot induce labor before 40-42 weeks so we were kind of out of luck there. So I took it into my own hands. (no judgement please) after trying everything, I finally bit the bullet and drank castor oil. I promise it's just as nasty as they tell you BUT, it worked! I started labor Thursday May 12, 2011 and went to the hospital around 7:00am. My mom and best friend Kenzie came along and then started the chaos... In military training you are not allowed to keep your cell phone on you at all. Thankfully just the day before Herc's SGT let him check his phone between classes until the baby came. So we called and called and left message after message and finally he called back.
He was told he had about 10 minutes to get back to the barracks and pack and make a shuttle (the only shuttle) up to Tucson. He made it to the Tucson airport but then had to wait for the next flight at 3:00pm.(4:00 Utah time) I was dilated to a 10 at around 2:00 and the Dr. said he would try and wait but couldn't promise I would make it and that if it started getting too dangerous we would have to proceed with or without Herc. Herc was on standby for his flight and was #6 in line for one seat. Thankfully everyone gave up the seat for him.. I'm sure the uniform didn't hurt his cause :). Well his flight landed 20 minutes early around 7:40pm and my hairdresser/family friend/lifesaver picked him up and drove incredibly fast to the hospital where Herc arrived at 8:00 and little baby girl arrived at 8:22pm.. Thank goodness for early flights and speeding! Hercules made it just in time! Little Lila Drew Hercules was here, at 6lbs 9oz and 19 inches long!

After the best weekend of our lives Hercules once again had to leave but near the end of June he graduated his advanced training and was on to the next phase of language training in Monterey, California. This time I got to join him so I moved on June 30th!
In August Lila got very sick with a Urinary Tract Infection. This was one of the scariest times of my life. She had a temperature of 103 and had to stay in the hospital for two days. She had an IV and was just so helpless. Turns out UTI's are not at all common in babies and we had to have 2 tests done. An ultrasound and test called a VCUG which is where they inject a dye into the bladder and see if there are any problems. After these tests we found out she has what's called Vesicoureteral Reflux. Which means the tubes from her bladder to her kidneys didn't form correctly and the urine backflows back up into her kidneys. This makes them more prone to infection and every time there is an infection it severely damages the kidneys. It is graded 1-5 and she has a 2 on the right and a 4 on the left. She will most likely have to have surgery within the next year to correct the problem. For now she's on long term antibiotics but other then that she is healthy and the happiest baby I've ever seen so for that we are grateful!

   

Anyway, here we are starting a new year and getting by. We move back to Utah in February! We are so excited to be back with family and friends yet sad to leave the ocean scenery and great weather.



I promise future blog posts will be much much shorter. And if you actually made it through this post I salute you!
Thanks for reading :)