Wandering Heart

Every Christmas we decorate our tree and we pull out our ornaments. I have tons that I have made, some I have bought and special ones that we got for specific events in our life. O has his first ornament and we bought one for C as well. Every year when I pull out our first house ornament, our first year of marriage ornament, I start getting nostalgic and a little emotional. I get teary eyed thinking of the things C has missed and how we miss him every year. O put his and Cs ornament up this year and he put them close to together, and I love it. Pregnancy loss is hard. I have lost one baby at 23.3 (a second trimester loss), and one at 7.5 weeks (first trimester loss). Both are hard; as soon as you hear that sweet babies heart beat it gives you hope, it gives you joy and you start loving and caring for them. I do however feel like I am lucky. When we go through trials in this life, we don't always know why or what the purpose is behind them. I know exactly why I lost both of these babies. We lost C because he saved Os life. When we lost C I was devastated, I was depressed, worried and scared. I couldn't see why this would happen to me after all that we had been through with infertility. I was mad. I was mad that O wouldn't have a friend, someone to fight with, someone to play with, a brother. When I got checked into labor and delivery I thought we would lose O, I watched his heart rate drop to almost nothing, and was being threatened to get sent home. After Cs water broke I knew exactly why everything went the way that it did. It was suppose to be that way. 

When Timmy and I did our Frozen Embryo Transfer (FET) we were ecstatic when we found out I was pregnant. I was tired, and happy. When we heard our little ones heart beat we were guarded as we were told that its heartbeat was slower than usual and it was about a week behind in growth. They told us that this could possibly be normal because the embryos could grow slower due to the IVF process. We were told to wait an extra week to see if our baby would grow or pass, but they warned us the outlook was not good. When we lost the babe, I wondered again why. I was in pain, I cried, and was once again was mad. Almost a year later, I went to see High Risk Pregnancy Center to see if there was a reason I had miscarried these babies. They ran multiple tests checked for any blood clotting disorders and then also ran tests for Cystic Fibrosis (CF). I know now why we lost this baby. If I had never lost this baby, I don't know if I would have ever been diagnosed with CF. Sometimes I wonder if that would have been a good thing, but I know that I will now get the treatment that my body needs. I had asked 2 other doctors since my sisters diagnosis to test me. One doctor said no, that there was no way that I would have that. The other doctor wanted to wait until I was pregnant because it would be covered by insurance. Either way most likely I would get sicker and would have no idea why. 

That is why I consider myself lucky. In life everyone has trials, but through mine I have found answers and reasons behind them. This gives me peace, and comfort. We are so blessed to have O our little ray of sunshine. During dark times there is always light, even if it's behind a cloud.         

Getting sick and Getting better

6 weeks ago when we went to Disneyland for Halloween, I got a pretty bad sinus infection. I took 10 days of Augmentin, but I never fully got better. About 3 weeks after starting the antibiotics the sinus infection came back. My nose was pretty clear but my sinus cavities were extremely blocked. The CF clinic couldn't get me to be seen, so I went to an urgent care and they gave me a corticosteroid shot and then 10 days of doxycycline and 10 days of prednisone. I feel like the thing that really keeps me healthy and prevents me from getting sick is to take my prenatal vitamins, my prevacid, and my singulair. I have also been taking this stuff called Intramax, it has tons vitamins, trace minerals and probiotics in it. I personally feel like the first infection never really went away, but because of this my doctor wants me to get a CT of my sinus. I will get that done in Utah during Christmas week. I finally finished all my tests today. I was at the lab at 0630 got stuck 4 times, 9 tubes of blood, and a nasty glucose tolerance test. Next Wednesday I will have another clinic appointment to go over all my results.  

Birthday freebies

I love free things! During your birthday there are so many restaurants and stores that will give you free things or give you so much off your purchase. Here are my favorite birthday freebies. 

I posted about this deal on IG, This is a full size bareMinerals brand lip gloss, it retails for $18 and is absolutely free if you have a rewards card at Ulta. 

This picture is from my e-mail, sorry. This is the birthday deal at Sephora, you can get these NARS mini lip pencils, or Peter Roth Thomas anti aging cleanser and cucumber mask. Both of these products are amazing, all you have to do is sign up for their rewards card; which is free and you get a free birthday gift every year. 

Did you know you can get a free Starbucks drink on your birthday? All you need is a free rewards card. 

There were 2 other deals I used on my birthday. If you have a Victoria Secrets angel card (which is not free, it is a credit card but totally worth it), you get a $10 gift card every year for your birthday. They also send you discounts all year. Sometimes I have used the $10 card to buy a lip gloss, and this would be free. This year I bought a bra because I had another $10 off a bra so a brand new body push up bra was $25 dollars which is a slammin' deal. 

If you look there are always restaurants that will give you either free appetizers on your birthday or give you a discount on your bill. This year these were my favorite deals. What are your favorite deals? 

30 and Thoughtless

Two days ago I turned 30. I never thought it was a big deal until like 6 months ago and then the closer it got the more it freaked me out, plus I started seeing wrinkles about the same time. 30 is not old by any means, but it is a weird age. I thought by now I would have my life figured out, we would be in our final home, I would be working less, and I would have like 3 or 4 kids. Hahaha, I guess you just have to laugh at all that. Life goes the way it goes, it is always different than you think. Not that it's bad different, just different.  
Here are 30 things that I have learned in my 20's 

• Nothing is like it seems. When I was in my early twenties Facebook became popular. At first it was just so people could post cute pictures of their babies and dogs, now it is so you can post your personal feelings, your political views and so you and your family can look perfect. Now we have instagram, snapchat, twitter, periscope and whatever else. Things are not always as they seem, everyone is going through something and no one has a perfect life. True happiness comes when you don't worry about others, and your not living through someone else. 
• Everyone is dong the best that they can. I feel like everyone is out to do their best. No one intentionally wants hurts someone else (maybe some people but I would hope not very many). 
• Trying to please everyone is just not worth it. For a long time I would go to every event, and every invite. I started getting really busy with work, picked up a second job, losing sleep and losing family time. I decided then that it was not worth pleasing everyone. The only thing that matters is yourself and your family. I mean yeah, everyone wants friends and friends are important but your life needs to come first, and you don't need to give people excuses. 
• Just do your job and go home. Working as a nurse sometimes is pretty difficult, you get attached to patients lives and stories, you listen to other nurses terrible stories about their life, sometimes you are getting yelled at by patients and doctors and you get involved in a lot of drama. 12 hours is a long time, but it is only 12 hours. I try to not get so emotionally attached to too many things. I can be there and listen but I try not to take the baggage home. 
• Practice really does make perfect. The only way you can get good at something is to do it over and over. This goes for Hobbies and even exercise. Doing something only once you don't really see a lot of results, but once you practice things start to come together.
• Exercise really is worth it. About a year ago I did a bootcamp for 6 weeks. It was difficult but I felt so good and alive afterwards. I had lost a total of 7 pounds and 11 inches. It was amazing, I learned so much about nutrition, and myself it was very worth it. Exercise is good for your heart, lungs, mind and so many other things in your life. It can make you feel powerful and defeated all in one session. When you stop you get tired, more irritable and you sleep worse. Exercise is awesome!!
• Having a clean house is not the most important thing in life. No one wants to live in a pig pen, but your house doesn't have to be spotless. Okay lets be realistic, my house has never been spotless, but some days I would get my exercise in, run errands, go to the park, make dinner and then feel so guilty that my house wasn't clean. 
• Eating at home is healthier, cheaper and it makes eating out much more exciting when you get to go out. I swear I go through phases where we eat out all the time and then don't for a while. My body, mind, and wallet feel so much better when we don't eat out. 
• Vacations are awesome and you should travel more. I have had some of the most amazing experiences traveling. I have met so many people, and seen so many things and it never gets boring. Trying new food, feeling awkward, doing stupid things, and stepping out of your comfort zone makes you grow so much. Spending money on a vacation is much better than a new shirt any day. 
• Time is better than money. We are not rich by any means, some months we just get by paying our bills, but time is way better than money. My husband loves his job, but before he switched jobs he was a teacher. He was making 35,000 a year, but had weekends, holidays, and summers off and he was so much happier. Time is so much better than money. Spending time with people you love is much better than money. Hopefully one day we will have more time together, until then we cherish the time we have. 
• Living by family is amazing and never take it for granted. We lived by family our whole lives, it was annoying sometimes and of course in every family there is drama, but having help and someone to call is priceless. Now we live in a new city with very few family around and it is difficult. It is so difficult to trust others with your kid, plus babysitters are like $8-$15 an hour which is ridiculous.  
• Don't listen to what people say. I figured this out while I was pregnant. Everyone has an opinion about everything. People want to tell you what worked for them, what didn't work for them, what is wrong and what is right. You start getting overwhelmed with information and then you have no idea what to do. Go with your gut, don't listen to what everyone says. Listen to the advice, take it into consideration but don't take it all to heart. 
• Communicate with your spouse. Never assume they know what you are talking about or they know what you want. No one can read minds, just say how you feel and what you want. 
• Stay calm. It is so difficult for me to do this. I am not good at staying calm, really in any situation. I freak out, jump to conclusions and worry about everything. It doesn't change anything, so stay calm. 
• Take time for yourself. I am still not very good at this. About once a year, I take my whole birthday week and do what I want. It is important that for at least 10 min a day you are doing something for yourself. I don't mean watching a show or even taking a nap. Those are all good things and help you relax, but that isn't really something for you. Meditate, exercise, sit in silence, get to know yourself. 
• It is okay to ask for help. Life is hard, don't get filled with pride and think you have to do everything perfect, and do everything yourself. Ask for help, you will be surprised how many people are willing to help. 
• Go outside. You will learn things about yourself and feel closer to God. Sometimes all you need is a little quiet time and a little sunshine. Vitamin D heals. 
• Don't worry so much. Worrying about the outcome of something or the future of something doesn't change anything. 
• Someone always has it worse than you. Don't be so hard on yourself. Life gets in the way of things, but remember there is always someone that is worse off than you. 
• There is always something to be grateful for. Always. Life sucks sometimes but focus on the positive and the things that make you happy. 
• Your attitude and thoughts determine your happiness and outcome of the situation. Being happy and positive are not really my thing; I am sarcastic and I am a realist, but the more I notice, as long as I train my self thought and stay positive I am much happier and my outcomes are much better. 
• Sometimes you just need a nap. Life is hard, busy and stressful. Sometimes you just need a nap and that is okay giving yourself a power nap (or a three hour nap) is sometimes just what you need to jump start the day. 
• Everyone is in a different place in their life. Everyone's journey is different. Just because some 30 year olds are building their dream home, going on vacations or are millionaires, who cares. If everyone was in the same place in life, life would be boring. We are all on our own journey, enjoy it!
• Family is everything. Don't lose these relationships, they are ones who truly care about you and your situation. They listen, don't judge and will do anything for you. Help them, and they will help you.
• Being comfortable is much better than being in "style" Man, I know I sound like an old lady, but it's true. I was told my someone the other day that they saw a girl who looked like a tachy teenage mom trying to control her littles. It Turns out she was an older mom that was also a pretty wealthy lady that was just trying too hard to "fit in" with her style. Sometimes it is just better to be comfortable. 
• It is better to confront a situation head on. Whether this is a problem with work, or a friend it is not good to keep things on your mind for a long time, this will cause wedges that may not be there, and cause unneeded stress  John Green said "Just remember that sometimes, the way you think about a person isn't the way they actually are." Talk to people, communication is key. 
• I am not perfect, I have a lot to work on and I am continually writing goals that I would like to be completed. I work hard, and I try to be the best I can be. I say it how it is and sometimes offend others, I am an open book and you can ask me any question and I will answer honestly. 
• My belief system is what gives me courage, makes me feel needed, worth it and loved. God knows all his children, he cares for us, he knows us. Jesus has endured all of our pains, he knows what we are going through and when we feel alone, he is with us. He never leaves us, we leave him. 
• Pink is still my favorite color, I will always like pizza and I love wearing jammies. These things will never change, and it is good to have something in your life that is steady. Even if it is your favorite color and favorite food. 
• Having kids is worth it!! I told someone once that if I knew how much work kids were, I wasn't sure if I would do it again. But I will, and I would over and over again. I love my baby!!  

I hope through my 30's I can be more confident, travel more, laugh more, and just be myself. 

Mommy woes

Lets talk about those days that you want to rip your hair out, get in your pajamas and cry on your bed. Some days like today I had wished that I wasn't a mommy at all and that I was traveling the world. This morning when I got up O yelled at me because he wanted me to stay in bed for whatever reason, he ran down stairs and started yelling, "GET DOWN HERE!! PLAY WITH ME!!" I told him that we had to go visiting teaching and he needed to get dressed and I wasn't coming down until he came up and got dressed. I assured him that If we had time I would play with him. Of course this went on for about 20 min along with me chasing him around the house trying to get his clothes on and dodging hits trying to get him dressed. I sat down afterwards to write down a quote and cut it out. I got up to find a marker and when I turned around the scissors were missing. O was hiding on the other side of the kitchen island and I said "Bring back those scissors!" When he came around the corner his new shirt that I just took the tags off was all cut up. He knew he was in trouble, I waved a tired finger at him and told him that this was not okay and he said "I told you, I didn't want a shirt!"  I told him once again that this was not okay and sat him in time out. This was just the beginning of my day. 

Maybe 2 hours later we went to pick up lunch for my honey and as soon as we walked in he started wandering the place, not wanting to stand next to me he started screaming, "I can't and I won't, I not want too!!" "I said no lunch!!" I told him all the reasons why he needed to stay with me and to not touch this and that and tried giving him something to re-direct the current fight. He was fine while we waited and then when we got our food we headed out to the car. I opened to door and he took off; running as fast as he could through a very crowded parking lot, and I flipped. In my mind I could see him getting hit by a car and I was terrified.I started screaming "O STOP!! PLEASE COME BACK!!" The whole time he would continue to look back at me and smile. By the time I got to him he was almost to the street and I grabbed the collar on his shirt because that is what I could reach and yanked him to a sitting position. Of course everyone that was around was starring at me and I am sure they were all thinking "This lady can't even control her child" or "Can you believe she just pulled her sons collar and spanked him?" I made him sit with his back to the wall and we had a "talk" about why this was not okay, why I was scared and that he could have been hurt. 
We got in car and we had a talk about how if he wasn't nice that he is going to have a hard time making friends and if he wasn't going to be good and listen maybe we would need to find him another family. Of course this second part was all bull and I would never, ever take him to another family. I was a very stubborn child myself, and my parents used reverse psychology on me a lot and I felt like it worked. In my sons case, obviously it doesn't work, I feel so far it never has. He said to me that he was okay with that and he wanted another mom. He then also let me know how much he loves his dad. 

So anyway the rest of the day continued to be a happy time full of rainbows and sunshine. Days like this suck!! Honestly I can think of so many things that would make days like this better, and even at one point I thought to myself, "I am glad I work tonight." I know, I am a bad mom right?? Wrong. I am a great mom!! I love my son more than anything, I would do anything for him. I feed him and take care of him, I play with him, sing to him, read to him, listen to him and tease him. I do my best and that is all I can do. I feel too many times we are hard on ourselves for no reason. Being a mom is hard and that is okay. We all need breaks and we all have days that are hard. It's days like this that we wish we weren't moms, or wish we were somewhere else doing something else, but this is what we chose; and we choose it day after day. I will choose this over and over again. I love being a mom, it is the greatest most difficult calling I have ever taken on. Cystic Fibrosis, infertility, losing a son, and miscarriage are all hard things, but being a mom is harder, and I can do it, and so can you! It is so worth it!!

    

Sweat Test

Last Friday was the start of all my tests, since my cystic fibrosis diagnosis back in August. My genetic markers are a little different than most. Delta F508 (which is the most common cystic fibrosis marker), and 3737c>t. There are currently only 2 other people in the world diagnosed with this particular marker. My doctor wanted me to get a bunch of tests completed before she decides how to treat me. So far I have completed a sputum culture (which came up part positive for micro bacterium) and a sweat test. Over the next two weeks I will be getting a glucose tolerance test, routine blood labs, a stool sample, and CT of the chest. 

What is a sweat test? 

A sweat test measures the amount of sodium chloride that is excreted in the sweat. Sodium chloride is elevated in patients with cystic fibrosis.

What is a sweat test used for?

A sweat test is used to help diagnose cystic fibrosis especially if the genetic markers are unknown. It is the standard test on how to diagnose cystic fibrosis. It can be tested on anyone with symptoms of cystic fibrosis, but most of the time it is done on infants with a positive newborn screen. 

How to prepare?

I was told to drink a lot of water or juice the day before the test. You don't want to drink anything that has a lot of sodium (Gatorade or soda) because they will be testing for sodium in the sweat. This is not a fasting test, so you can schedule it anytime during the day. 

I was a little nervous about the test, because I had no idea what to expect. The testing took about an hour total. First they clean two areas on your arm, and strap these gel like pieces to each place. They leave them on for about 10 min, and then wipe the area clean once they come off. They then strap a collection tubing (the blue dye is to mark how much sweat is collecting in the tubes) in the same place and leave them strapped to your arm for about 15 min. Afterwards they pull out the tubing and drains the sweat into two tiny tubes. The equipment looks much scarier than it actually is. During the test there is some burning but it is not painful. It did burn my skin a little but after a few hours the marks were gone.  

The most difficult thing about getting tests and going to doctors appointments is the time that it takes out of your day. This particular test only took about an hour, but combined with registration and driving the total time was about 2.5 hours. I know this is just the start of testing, and doctors appointments so I need to find the positives and look forward to learning more about the disease and the tests that come along with it. 

What's in my bag?

One of my favorite articles in magazines is when celebrities have a "what's in my bag" feature. I am no celebrity, but I love to see what people keep in their bags. Growing up I loved pulling everything out of my moms purse. It was kind of like a mystery bag (which I also loved to buy at the toy store). There is usually nothing fancy in my bag, and mostly mom stuff. Here is what I keep in my bag.

Bag: I switch bags constantly, not because I am super stylish but because they get worn out, once I use them I normally throw them away. My hubby bought me this bag and I love it. Its Ogio brand. The color is perfect for fall, and it's super light. It has tons of pockets, and the perfect bag for someone on the run. Now lets talk about what I keep on the inside

• Snacks: Of course this is my number one on my list. Although you may think these treats are for my 3 year old son, they are not... I love to eat and I always have to have a snack. This treat is not a healthy one but good to keep your blood sugar up in a rush. I work night shift and I always needs treats to keep me going. Plus who doesn't love gummy bears?
• Lip gloss: I love lip gloss, it's my fav. I love trying new colors and flavors but always come back to my favorites. Juicy tube, and Victoria Secret brands are my fav and anything pink. 
• Concealer and mascara: I currently have Maybelline's pumped up mascara, it is cheap and makes my eye lashes full. Because of my wicked allergies, and probably working nights I have wicked under eye bags, I use L'Oreal's magic lumi stick, to cover them up. 
• Ibuprofen: I get a few different kind of headaches; tension (from my tmj), sinus (from my cf) and sleep headaches from lack of sleep. I am also constantly clearing my throat which also gives me headaches quite often, I try not to take anything but sometimes they get so bad I have to take something. 
• Pens and sticky notes
• Wallet: I currently bought this one at Target, I love how big it is and it can fit all of my millions of cards in it.
• Hand cream: I love all the yummy smelly ones but they just don't help my nurse hands. I love Gold Bonds Intensive healing hand cream. It smells fresh, is not sticky and soaks right in.
• Calms Forte: My child is a crazy and sometimes gets out of control. I use Hyland's homeopathic dissolving tablets. These are perfect for temporarily relieving the symptoms of restlessness and causeless crying. Love them! 
• Sunnies: I have about 4 pairs of sunglasses, because I lose them all the time. I never buy expensive ones and buy them at TJ Maxx, right now my favs are my heart Neffs and a pair of Betsey Johnsons. 

   

• Coupons: I usually have a million coupons in my bag, but I cleaned them out. Currently I have the two newest Victoria Secret coupons. I love my Angel card, it saves me so much money!
• Kids activities: These are a must for appointments and trips to the grocery store. Right now I have stickers and bubbles.

Well that was fun!! I hope you got some ideas of things to add to your purse. 

Overcoming anxiety

Believe it or not I am a pessimist (I like to call myself a realist), it is difficult for me to think of the positives, because I worry a lot (probably more than your average person). I have struggled with anxiety for years. During college it was probably the worst it ever has been. I seriously struggled with testing anxiety, and ended up on a few medications to control my anxiety. I worry about what people think of me, the future, and my child constantly. Of course I know that worrying doesn't get me anywhere and it doesn't change the situation that I am in, but it is difficult finding ways to stop yourself from worrying. 
These are some ways that have helped me stop the anxiety and focus on the positives.

• Exercise: Seriously it sounds very cliche but for the last 16 weeks, I have exercised at least 4 times a week. I have seen a huge improvement in my worrying and anxiety. I admit I don't LOVE working out, but I do it for my lungs, and my brain. For the last 16 weeks I have done Kayla Itsines Bikini Body Guide. I have not what so ever changed my diet, which I know is like bad, but I am working on it. :) 
• Writing: writing a blog has helped me a ton, I'm not saying "hey stop everything and go start a blog." I do however think writing in a journal helps, and even better a gratitude journal. They have some awesome gratitude journals out there. They have some that give you a subject to write about and others that are just lined like journals. 
• Surround yourself with positive people: There have been times in my life that I didn't realize people were bringing me down. Once I left those toxic relationships or stopped being around them so often, I felt a weight off my shoulders. It is not worth trying to please people that are not "your" people. 
•    Meditate: I am an avid believer in meditation. Sitting alone in silence has always been awkward to me. I don't like being alone for a number of reasons. In a sense, I am uncomfortable with myself. I have too many thoughts and sometimes I want my brain to stop for a second. Sitting in silence for even 2 minutes is amazing. The goal of meditation for me is to think of nothing. The best way for me to do that is focus completely on my breathing. Sometimes I even say to myself as I breathe "breathe in, breathe out." 
• Positive affirmations: I use these a little different than other people. I say them in my head as I meditate, and this focus helps me to more positive, not right away but afterwards I feel calm and more positive. Lately I have been saying "I'm healthy, I'm happy and I can breathe." 

Lately feeling positive has been difficult for me. I have been working way more than I want, I got a really bad sinus infection that has taken me weeks to heal, my house is a wreck, I have been giving my son too many sweets (aka feeling like a bad mom), I have so many appointments and don't have enough sitters, I haven't worked out for almost 2 weeks...the list can go on and on. 

As I sat in church today I was reminded of all the things that I should be grateful for, and the things that will help me overcome my trials, my attitude, and my negative thoughts. I will still have difficult days, and believe me they come way more often than I would like. All I can do is "Go forward in life with a twinkle in your eye and a smile on your face, but with great purpose in your heart." --President Gordon B. Hinckley

Lets eat!! Our guide to eating at Disneyland

My family has always been Disney fans. I myself have only been an annual pass holder for one year, but my sister has lived in Southern California for years and we have always gone at least once a year to get our Disney fix. Everyone is going to have their own ideas about the best places to eat at Disneyland. Here are my tips and the things I have learned this year about eating at Disneyland.  

Eating at Disneyland can be a bit tricky. You want to save money, but who wants to haul all their food around with them all day? You can of course leave the park and eat, but who wants to waste time leaving and coming back? We have found the best thing for us has been to load our stroller and backpacks with snacks and then eat meals at Disneyland. Here are our favorite places! 

Best places to eat: 

• Refreshment Corner: (we call it Coke corner) We love getting flavored sodas, stuffed cream cheese and jalapeno soft pretzels and mac&cheese covered hot dogs. 
• Corn dog Castle: You can order corn dogs at a number of places around the parks, and believe me I have tried all of them. My favorite place to order them is at Corn Dog Castle. 
• Stage door cafe: This item is not on the menu but you can definitely order them. My hubby's favorite thing to order are the mozzarella cheese sticks. They are good and you get about 6 full size string cheese. 
• Hungry Bear Restaurant: This place has some healthier choices; including my favorite (which are not so healthy) sweet potato french fries and the fried green tomatoes sandwich. Every time we have come this place is not very busy, is in a great location overlooking Tom Sawyers island, and the train passes by as well. 
•  Begal BBQ: This place is pretty busy, but it is pretty inexpensive for a good snack or meal. My favorite skewers to order are the safari skewer (which is bacon wrapped asparagus), the banyan beef skewer (a spicy beef), and the outback vegetable skewer. They are about $4 a skewer so not bad for a meal. My suggestion is get a few and share between a few people.
• Tortilla Joes: Now this place is not in the Disneyland park, it is in Downtown Disney. There are so many things I like about this place. They have table side guacamole which is the bomb!! All their tortillas are homemade and just to die for. They have balloon artists come around and make things for your kids (just don't forget to tip). That is my sons favorite part, this time he picked a penguin. You can also see the firework show from the outside (if your eating that late). 

There are a few other places that I have heard are good, but have not yet had the opportunity to try them. Soup bowls, and baked potatoes at Harbour Galley, the cozy cone (reds apple freeze, pear of dice soda, churro bites and the bread cones) 

Favorite snacks

• Jolly holiday Bakery: I love the Matterhorn Macaroons. 
• Disneyland's fudge and divinity
• Tiki Room: Dole whip
• Disneyland churros

Now these are all our favorite places to eat, and snack. If you haven't, give them a try. Let me know your favorite places to eat. Remember all of the sit down restaurants are best to accommodate reservations better if you get a reservation before hand. 

O's delivery story

As you know we used IVF to get our son O, and as you know we were pregnant with twins. As my pregnancy progressed, slowly we started having problems. Contracting at 19 weeks, I checked myself into Labor and Delivery on a Sunday. I felt stupid because I worked there and I constantly saw woman who really had nothing to worry about and would come in wanting pain medication or just come in to hear their baby’s heart beat. Some women came in every week until they delivered. I didn’t want to be one of those women. They sent me home, saying this was normal for carrying twins, and my body was just getting used to carrying two babies. 

 At my 20 week appointment my doctor stated he felt comfortable with how my pregnancy was going and he didn't see a reason to treat me like a high risk pregnancy.  As time went on everything seemed to be running smoothly. During my pregnancy I would wake up around 8 am and either walk the outdoor pool my husband worked at, or join in on the water aerobics class. It was fun, it cooled me down, and I felt like I was doing something good for my babies.

 Around week 23, I woke up one morning from a terrible nights sleep (which was very common for me through this whole pregnancy), but something was different about this night. I woke up feeling blah (I really have no other way of describing it). I had weird dreams all night and felt very warn down. I went for my swim, not joining the water aerobics because I just felt really tired and sick. I took it easy the rest of the day knowing that I was scheduled to work that night. I started contracting around noon and thought that if I slept everything would be fine. I woke up for work and worked all night, but felt contractions throughout the night. Talking with the nurses I worked with we decided that I should go home and have a full days sleep, and if it continued then I would check myself into labor and delivery. I slept well, and woke up for work and everything seemed fine. Once again I started contracting and during work a friend and I went down and got checked into Labor and delivery. They had a hard time finding two heartbeats. The nurse seemed a little concerned, but tried to hide it. O wouldn’t really stay on the monitor and they couldn’t find a second heartbeat. The nurse left the room to call the doctor on call and when she came back into the room she stated the doctor had said to record two different heart rates and send me on my way. It would be up to me whether I would stay at work or go home and get some sleep. 

The next day was our 24 week appointment. That morning Timmy and I gathered our things, for what we thought would be a normal ultrasound. Unfortunately we were told the worst. The doctor looked at C first and moved the ultrasound around a little, and then immediately moved up to O, where we heard a heart rate immediately and saw him moving. He moved back down to where C was and he stated he was sorry, but he was unable to find Cs' heart beat. He said a few things about Cs' position and suggested that we make our way over to maternal fetal medicine (MFM). My husband and I were devastated, both holding each other the whole way to MFM, praying that we would have the strength to move forward. I felt empty inside, that something had stabbed me in the heart. At MFM they performed an in depth ultrasound on both babies. There was no reason they could see why C passed away, and both babies looked perfect otherwise. This was devastating and scary. We were now hit with the worry of what would happen next. The doctors assured us that there would be no reason that I would deliver O early and that he would be safe. 

I was a wreck for the remainder of my pregnancy. I bought a Doppler and I worried about feeling him move, and listened to his heart beat constantly. The doctor suggested that because everything looked okay to continue with our planned appointments, and I did not feel comfortable with this at all. I asked if we could possibly start doing fetal non stress tests (NST) every other week. I started spotting at 26 weeks and once again was assured that nothing would happen to my baby and to continue working and living a normal life. At 29 weeks I went in for a NST and watched the heart strip as my sons heart rate went down to the 90's, I screamed out and the medical assistant told the doctor and once again I was assured that it was picking up my maternal heart rate, and everything was fine. I had trusted my doctors but with everything going on I was starting to lose trust. I knew with my whole heart that this was not true, and something was going wrong. I went home and for the remainder of the day listened to my son. He sounded great all day until I sat down to eat lunch. Once again I heard his heart rate slow, I checked my heart rate and continued to listen to his, which at this point was much slower than mine. The panic I was going through was almost too much. I started running through a million scenarios in my mind and none turned out okay. I knew I had to do something. I called Timmy crying and he instructed me to go to the office to be seen, a small voice in my heart told me that I needed to check into the hospital instead. 

The girls I had worked with for years checked me in and asked me all the typical questions. Why was I there? Could I feel him move? Was I bleeding? What was I worried about? Unfortunately I felt like they thought I was worrying for no reason, I felt like people were thinking “not her again.” I knew deep in my heart that I was there for a reason and if they only knew what I was going through. Now more than ever I know that a mother knows her body best and there is such a thing as mother’s intuition. Because of this I feel like I am a better nurse and when a mother tells me something is wrong, something is. As soon as I was connected to the machines, the nurse went out and called the doctor, the doctor wrote for me to be discharged home. The nurse came back and said “We have a discharge order for you to go home, but because we know you, you can stay until you feel comfortable leaving.” I asked to stay just another 30 min, and then almost immediately Os heart rate went down with her standing in the room. I was so grateful this had happened otherwise I don’t know if they would have kept me. 

That night my sons’ heart rate had a deceleration into the 40’s, for almost 5 min. He recovered and they kept me for a few more days. Luckily at this point the Neonatologist came in and the doctors decided that I would get 2 doses of Betamethasone (a steroid to help mature the babies lungs), and start me on Magnesium sulfate (to prevent brain bleeds for the baby). These days were some of the worst in my life; worrying about my son constantly, listening to his heart drop and not being able to do anything about it. Throughout my stay I had seen so many doctors and they were all telling me something different. I was getting confused by all the statistics and stories and was even told at one point that if they sent me home there would only be a 20% chance that I would lose this baby. Sat night, the nurse I had was sick and only came into the room once to take out my foley catheter and disconnect my iv. She seemed to think that I would be going home soon. Through the night I was re- positioning myself to help bring my sons heart rate up. I stayed awake watching the monitors and every time his heart rate went down, no one came in. I would just watch the charting show up on the computer screen, as if they were doing something. At this point I was so tired, so worried and I was mad. Nothing was being done about my situation and no one seemed to be worried about anything. I had already lost one son, and I wasn't going to lose another. 

Sunday morning I was transferred to a new doctor (the laborist for the day). This was the only time where I finally felt like my questions were being answered and that we were making progress. I got up to use the restroom, and Cs water broke. I said calmly to my mom and my nurse “I think my water broke.” The answer I got was “Why do you think that?” I said “Because there was a pop, and look?”Once again I was bleeding, and the water was definitely not clear. They told me this would not change any plans unless it put me into labor. Right away I was contracting and 15 min later I was 7 centimeters. They rushed me back for a cesarean section (due to where C was lying and because O was breech) and there I delivered both my babies. 

Mostly worried about O he calmed my nerves as he came out screaming, what seemed louder than most babies. That afternoon I got to hold my Angel baby C, he was perfect. I can't tell you the special feeling we had in the room, his spirit was there and I knew he was watching out for his brother. If C's water wouldn’t have broke that day, I don’t know if O would have made it. I feel like he passed away so O could grow big and strong and his water broke to save O life. The techs that day were able to get his hand and foot prints and his hand and foot molds. They will always be special to me. 

My tiny 3 pound baby O went to the NICU, after only a few hours, I was able to get up and make my way to the NICU to see him. He was on continuous positive airway pressure (CPAP) but no oxygen and had a umbilical venous catheter (UVC), but I was not as worried now that I could see him. My emotions were crazy, I was dealing with the loss of one, the feeling of being detached from O, including trying to heal from a cesarean section and pumping every 3 hours. I felt alone; I felt as though no one knew what I was going through. I felt as though my heart was torn between 2 worlds. I was happy that my son was here and alive, sad that he was in the NICU and sad I lost a son and knew that we would be signing a birth and death certificate at the same time. 

The next few days were a blur, I was overly tired, in some pain and my hormones were a mess. I will always be grateful for the nurses I had in Postpartum who took care of me and listened to me cry. I will never forget this experience; the good and the bad, the happy and sad. Both my boys are so special to me and little O will always be a little miracle. 

Just Breathe

Back in August I was diagnosed with Cystic Fibrosis. My case is a little different than most. The first reason my diagnosis is different is because I am 29 years old and second because I have a different genetic marker than most cystic fibrosis patients. My sister Lena was diagnosed with this about 4 years ago, she was also 29. We have always been close and talk all the time. I have watched her fight, and because of my nursing background have been always interested in the medications she takes and the process of the disease.

 My genetic markers are Delta F508 and 3737C>T (I am currently only the 3rd registered in the world with this genetic marker)

What is Cystic Fibrosis?

www.cff.org says it’s a “life-threatening disease that causes persistent lung infections and progressively limits the ability to breathe.” 1 in 4 people have cystic fibrosis and 75% are diagnosed before the age of 2. This disease is very complex. Because of the many genetic mutations and markers, the disease has many different symptoms and it affects each patient differently.

Was this diagnosis a shock? Not really. For years I have always struggled with severe allergies and mild asthma (more like “asthma” they couldn’t ever diagnose). I have always cleared my throat and my mother says I had some digestive problems as a child. I get sinus infections, bronchitis, frequent bladder infections and ear infections, and they usually don’t clear after one dose of antibiotic. I have had my tonsils out and an extensive sinus surgery.

The older I get my allergies get a little worse and my cough gets a little more persistent…very very slowly. Am I a little scared and worried? Yes. Of course!! As you know this is a life-threatening disease. If you read about the disease on most websites it says terrible things about this disease. It says I will most likely die before I am 50, I will be in and out of the hospital with lung infections, and in my sisters’ case pancreatitis. They say I will have pic lines with IV antibiotics, and will lose so much weight, that I will possibly end up having a feeding tube. Do these things scare me? Yes! But after yesterday I left my appointment even more positive than I did going in.   

I had my first appointment yesterday, and I saw so many people and listened to so much information. My hubby and I sat in the same exam room for 6 hours, meeting people and talking about what we will do to control this disease. It was a little overwhelming. We first saw a physical therapist. He talked about my bad habit of slouching. We discussed ways to physically help my breathing. Next I saw a respiratory therapist; she stretched my sides and performed a lung function test. My fev1 is 94%; this is the volume of air forced out in one second after taking a deep breath. This level is pretty good for someone with CF and this will be my baseline. 

Next I saw a dietitian; we talked about not losing too much weight and getting some of my vitamin levels tested. After the dietitian I saw a social worker, we discussed our health insurance, and talked about the emotional support I have in my life. We then waited for the doctor who actually volunteers her time at the CF clinic. We decided that I would get a handful of tests taken: sputum culture, stool sample, ct of the chest, blood tests, sweat chloride test and a glucose tolerance test. After the result of these tests we will decide what else we will do, as far as medications and treatment for the disease.

During the last General Conference for my church there was a talk by Elder Bednar. The talk was about why the church is run by older men, and what he has learned as the youngest apostle of the LDS church. In this excerpt he is asking one of the older apostles, Elder Hales what he has learned as he has gotten older. “What lessons have you learned as you have grown older and been constrained by decreased physical capacity?”

Elder Hales paused for a moment and responded, “When you cannot do what you have always done, then you only do what matters most.”

I was struck by the simplicity and comprehensiveness of his answer. My beloved apostolic associate shared with me a lesson of a lifetime—a lesson learned through the crucible of physical suffering and spiritual searching.

This talk really meant a lot to me, I thought about the process of this disease and where I might possibly be in the next 20 years. I thought about everything that is important to me: my family, my religion, the knowledge I have gained over my life, and what makes me happy. It helped me think about what I can eliminate out of my life to be happier now, and how I can live my life to the fullest. I need less negativity, more family, less filler, more vacations, less cleaning, and more playing. From now on, I live my life like I am dying.