Preemie Pandemonium

Last day in Merced

2012-03-01T23:54:00.001-08:00

We had another relaxing day. I did some shopping at Kohls because I had a gift card from Katie. After that we had lunch at Round Table. It's been a few years since I've Round Table, it was yummy!
We spent the afternoon indoors resting and napping while it was raining. Once the rain stopped I took the kids to the park. The equipment was a little wet but they REALLY wanted to play outside.
We had dinner at this cute little Armenian owned restaurant called Black Bear Diner. It was very good food!
We had a really nice trip. I'm sad to leave my aunts and uncle but we're anxious to get home to Daddy. Jax talked about Daddy a lot today. He really misses him.

A chill day

2012-03-01T00:05:00.001-08:00

Today M woke up with a 102 fever. So, after some TLC and a Motrin and Tylenol regimen she was fine by late morning. She was up EARLY! Both kids were up at 7! Yikes. I'm guessing her being sick was why she couldn't sleep.
Well today Uncle Tom and Auntie Karen took us to this super cute and VERY delicious cafe called Jantz. It was YUMMY! Jax behaved very well. I was so proud of him! He was not his typical nightmare that he normally is when he's in a restaurant. It was great!
I cannot say the same for dinner! We drove to Visalia to have dinner with Brian and Melinda. It was fun for the most part. Maryam ate really well! She ate over half of her spaghetti and a whole breadstick!!! She rarely eats bread, so it's a pretty big deal! Jax didn't eat but instead acted like a 2 year old boy. :) I love him but he can be difficult. Good thing he's ADORABLE!

Yosemite Mariposa Grove

2012-02-28T23:26:00.001-08:00

We left the village and headed to Mariposa Grove. I wanted the kids to see the Tunnel Tree. I thought it would be fun to get a picture of them in front of it since I've got a few of my cousins and I in front of it too. It didn't happen!
On the drive over there (it's 26 miles and took over an hour to get there) I drove through snow! I've never driven while it was snowing! I was very brave. :) Maryam wanted to get out of the car and get snowed on. She's so funny! So, I pulled over, she and I got out and watched as the snow landed on our hands and melted. She got a little sad when the snow melted. But she wanted me to take a picture of it in her hair, so I did!
We got back in the car and kept on going. The temp ranged from 45 to 27 degrees. When we got back in the car it was 29 degrees! When we got out again at Mariposa Grove it was 34. YIKES! This is when I started to worry about M's Chronic Lung Disease. We were fighting altitude and temperature. Ugh. But she insisted on trying to hike.
So, we hiked in the snow! There was snow everywhere!! The kids kept making snowballs and throwing them at each other and at me. It was fun! We didn't quite make it the 1.3 miles to the tree, but we had fun trying!! After about a mile both kids finally conceded that it was time to go back to the car. It was snowing, getting dark, they were starting to get cold and they were definitely tired! So we headed back! Jax took the way down the fun way and opted to roll down for a few minutes. It was hilarious! Maryam took a break and made a snow angel. And they both made and threw dozens of snowballs at each other and Mommy.
We had a GREAT time! When we got back, after an hour or so, Auntie Karen had the car nice and toasty for us. I changed the kids into dry clothes and we headed home. It was a great day.

In case you're wondering, Maryam needed 2 breathing treatments when we got home. It's 11 pm, it's been an hour since her last one. If she makes it until 2am I know she'll be fine. Hoping she makes it!

Yosemite Bridalveil Falls and Yosemite Village

2012-02-28T22:55:00.001-08:00

Today I took the kids to Yosemite National Park for some hiking and nature time. We were driving along on the way to Bridalveil Falls when Maryam says, quite casually, Hey Mommy, there's a deer over there. Sure enough there was two does on the side of the road eating grass! We stopped and took pictures. Jax was so excited. He started listing off other animals he wanted to see. (elephants, zebras, dogs, hippos, monkeys) He's so cute!!!
We did the hike up to Bridalveil Falls and the kids loved it! Parts of the water was frozen. There was snow along both sides of the falls and both kids noticed it. That snow got them all hopped up on seeing and playing in the snow!
After the falls we drove on into the village for lunch. We ate lunch at the cute little deli there. I wanted to go to the Ansel Adams gallery but it is closed until April. :( We walked around the village, I bought the kids a few souvenirs, and the kids each picked out a post card for Daddy.

Parks, Trains, and Animals

2012-02-27T23:59:00.001-08:00

Today after I dropped Auntie Karen off at Dialysis, I took the kids to two parks, the train station and the zoo!
We started at Rahilly park where the kids played on the jungle gym and swings. Jax chased a few squirrels, poor squirrels. There were some walking paths throughout the park so we took a walk too. They loved it! They played with dogs that were out for a walk, kicked rocks, had a sword fight with sticks and chased some more squirrels. :)
After the park I took the kids over to the train station so they could see a real train. They were so excited when an Amtrak train pulled in! Jax let a very loud "Wooooooaaaah!!". It was awesome. They both waved to the conductor when she came out. Jax must have said "All aboard!" 20 times! They waved when the train departed the station. As that train left a very loud freight train pulled in. Every time the horn blew both children covered their ears. It was cute. They loved it!
Once the trains were on their way we headed to Applegate park to check out the zoo and play some more. We cruised through the zoo fairly quickly and then headed to the playground.

Another game night!

2012-02-26T23:26:00.001-08:00

We bought the kids a new game today called Go Fish. It's a different version than I've ever played! This one came in a tackle box and a fishing pole! Cool, right? The kids sure thought so.
After Go Fish we played Break the Ice. If you're thinking, "Jennifer, you're mistaken, it's called 'Don't Break the Ice'!" Well...not the way Jax plays!!! We no sooner have the ice up than he's hammering the crap out of it laughing his head off.

The Indoor Exhibit

2012-02-26T23:19:00.001-08:00

After walking around 20 acres and seeing 54 different aircraft we decided to go in and see what was inside the indoor exhibit. We saw a pilot seat, model planes, engines and an actual cockpit! It was pretty neat.

Uncle Tom's plane

2012-02-26T23:15:00.001-08:00

A long time ago, in a galaxy far, far away, Uncle Tom was in the Air Force! Actually, he was in the Air Force from 1964-1968 and he was stationed here in Merced, CA and here is where he met my Auntie Karen. :)
While he was here he worked on the Convair F-106 Delta Dart as part of the 456th FIS, stationed at Castle AFB. I took loads of pictures of the children next to the Interceptor. The Interceptor could reach speeds of Mach 2 and saw service during the Vietnam War and was used to patrol the West Coast during the Cold War. (per the visitor's guide)

Castle Air Museum

2012-02-26T23:05:00.001-08:00

Auntie Karen, Auntie Kathy, the kids, and I went to Castle Air Museum today. We were there for almost 2 hours. We saw every plane on the grounds and there are 55 out there! Jax wanted me to take his picture next almost all of the planes. He had a great time!!
He loved the bombers most. Probably because they were the largest planes out there. He spent a lot of time checking out a B-52 Stratofortress and an RB-36 Peacemaker. When he saw the RB-36 he pretty much ran past all the other planes until he got to it. It was hilarious.
He liked seeing a helicopter too. And all the jets got him excited. I think it was cute that he kept saying, "Wow!! Another one!!" over and over again. :)

10 days?

2012-02-25T23:03:00.001-08:00

I just noticed that its been 10 days since I updated my blog!!! Bad Blogger!!!
This week was a busy week so here's the breakdown.
Monday we enjoyed the day off!! Maryam didn't have to go to school because of the holiday. It was awesome. We played games, played outside and had a fun family day!
Tuesday we had another fun day. It was icky weather though so we spent the day indoors. I don't think the kids ever got out of their pajamas!!! It was a fun pajama day.
Wednesday I took the children to Disneyland to meet up with Maryam's NICU roommates. Jackson and Tyler celebrated their 5th birthday surrounded by family and friends. They're cute and super sweet. We had a fun time. After Jen emails me some photos I'll post them.
Thursday we spent the day at Momom and Popop's house with Auntie Brande and the boys. They had fun riding bikes, scootering, playing video games, coloring, building with Tinker Toys and rough housing. It was a super fun day!
Friday the kids and I headed up to Merced to visit Auntie Karen, Uncle Tom, and Auntie Kathy. It was a rough trip but we made it!! Friday night we headed over to my friend Debbie's house for a few hours. Debbie is the sister of my best friend from college, Katie. It was so nice to see them! The kids all played well together and my kids needed to play hard after a long car trip.
Saturday morning at 4 am Maryam woke up sick. She started coughing out of control. I had to give her 3 breathing treatments from 4am to 7 am. It was rough! Of course all the coughing and the noise from the nebulizer woke up Jax. It was not fun.
Around 11 Katie came over to visit!! It was so nice seeing her. I've missed her so much!
Around 12:30 my Auntie Susie and cousin Amanda came to visit and by 1:00 my cousins Ken and Marietta were here. Soon after they arrived we all had lunch. By 2:30 Maryam and I were on the way to the ER. Marietta joined us for company. :)
The ER at Merced Mercy Hospital was AMAZING! They had a neonatologist come down and check her out. It was pretty awesome. We were in and out in about an hour. The doc was awesome. He told me that I was doing everything right, to keep doing what I'm doing and diagnosed Maryam with an upper respiratory infection. :( It could definitely be worse!!!
After everyone had gone home Eric and I played game after game with the children. They were passed out by 9:30. Mommy win.

Pet owner education

2012-02-15T12:50:00.001-08:00

Today Maryam took Mr Bishop to school to show him off. He had so much fun licking all the children! Maryam loved showing him off!

Valentine Day

2012-02-14T23:39:00.001-08:00

Brett and I woke the children up at 7 and were out the door by 7:30 on the way to DISNEYLAND!!!!! It was RAD! We let Jax pick all the rides. He got a kick out of it. We just kept asking him what ride he wanted to go on and he'd answer with delight!
We went on a bunch of rides that we don't usually go on! It was fun! We spent pretty much all day in Tomorrow Land. We started on the Astro Orbiters, then on to Buzz, next the Monorail, after that Innovations, Nemo then lunch. After lunch we hit up It's a Small World then ended the day at Winnie the Pooh. We had a really great day. Both children behaved really well and the park wasn't crowded.
We did confirm that poor little Jax gets car sick. :( Poor baby threw up all over himself minutes before we pulled into the Disneyland parking lot. :( We found a few common circumstances between today and the zoo trip last month. On both trips Jax drank a cup of milk in the car. In both trips we had the DVD player on. In both trips he was wearing a sweatshirt. Most research shows if you're prone to being carsick do not read, play hand held video games or watch movies. So, I'm taking away the DVD player, his Leapfrog Story Book and his books. The research also says to not eat or drink anything heavy in the car or right before getting into the car. So, no more milk in the car and I'm going to have him wait an hour after drinking his milk before we go anywhere. And lastly I'm going to dress him in lighter clothes because heat can bring on carsickness too.
Wish us luck!!!

Day before Valentine Day Bowling

2012-02-14T00:32:00.001-08:00

Around 1:00 today Jax asked to go bowling. He asked again at 1:01, 1:02, 1:03, 1:04 and well you get my point. Finally at 4:30 after his nap and after Maryam got out of school, we finally took him bowling. Well, we tried.
My car was having trouble last week, so on Friday we took it in to be fixed. While it was in we ordered 2 new tires and an alignment. Why not, right? Well the car was fixed on Saturday but the tires weren't going to be until today. So, they called this afternoon and said the car was ready! Hooray! We went to pick it up at 4:30 on the way to go bowling.
We didn't feel like moving car seats so Brett kept the kids in his car and I took off in my car. I got down the road about 1/4 of a mile when the car started to shake. Soon after that I heard a loud boom and the shaking got worse. I decided to slowly move off of the road. When I got out of the car I looked at the tire on the driver side and it was fine. When I went around to the other side i saw that the wheel was hanging off!! This is about the time that Brett and the kids pulled up. Brett got out of the car screaming profanities.
We both got into his car and headed back to the automotive repair shop. Brett explained what happened and the rest is a series events that got the wheel put back on, the car checked out again, my father-in-law and Brett regulating and a partial refund.
Finally around 7:00 Jax got to go bowling. :) Both Jax and Maryam had a great time bowling. Little Jax was so excited and cute!!! His smile melts my heart.

Feeding Tube Awareness Week, Day 5

2012-02-09T17:29:00.001-08:00

You may have noticed that I took a 2 day break from blogging about Feeding Tube Awareness. I was having difficulty blogging about the daily topics. One was "A day in the life of tube feeding" where the blogger is asked to go over all that is involved in the process from morning to night and most nights, through the night. I decided that I'm going to sit that one out. The brain is magical, it allows a person to forget so the person can move on. We've moved on. If I really thought about it, I can remember every detail, even the feeding pump alarms. I'm CHOOSING not to.
Yesterday's topic was "how has your attitude/family/friends' attitudes changed towards tube feeding?" We've always been blessed with very accepting family and friends so their, YOUR (the reader) attitude has always been amazing. No change was needed because everyone understood or at the very least, tried to understand. We did get the occasional ignorant comments like, stop tube feeding her and she'll have to eat. But I won't focus on the negative. Thank you to all of you who were and still are supportive, understanding and accepting.

Now on to today's topic: The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact.
(The goal here is to point out that awareness is needed among all audiences. Certainly there are clinicians who are well versed and expert in this area, however, there is a need for basic knowledge among a wider range of medical professionals)

I have a few examples of losing faith in the medical professional treating my daughter. I will share two such tales.

May 2009 Maryam was at Children's Hospital of Orange County (CHOC) for a 4 week non medical inpatient feeding clinic. One day while she was playing in our room she accidentally pulled her button out. No big deal, right? Except they told me not to bring an extra button because if we needed one, they would provide it. So I called a floor nurse to come in and put a new button in. She walked in with the box and handed it to me.
I asked the RN, yes RN, if she was going to put it in and she looked at me like I was nuts!!!
I looked at the box knowing full well she wasn't going to do it and handed it back to her. At this point I was curious as to what excuse she was going to give.
That's when she asked me if I've ever done it before and if I knew how. That's when I looked at her like she was nuts. OF COURSE I HAVE!!! Only dozens of times, but why does that matter?
She then proceeded to ask me if I minded putting it in because when she does it, it "freaks" her out. SERIOUSLY?!?!?! That same night, with the same nurse, she tried giving Maryam the wrong meds. But that's a whole other story.

On February 14, 2010 Maryam was taken by ambulance from High Desert Medical Center in Joshua Tree to Kaiser Hospital of Riverside because she had acute pneumonia of the upper left lobe as well as flu b. (Yes! She did have the flu shot) Upon arrival at 2am the intern doctor on duty was asking me about Maryam's medical history. I started from the beginning and went to the present. She asked about her 3 surgeries. When I explained that she had a G-tube placed and a fundoplication in July 2007, she looked at me like I was crazy. That's when I realized she was clueless. She had never heard of a fundo and looked at me like a deer in headlights when I asked for a feeding pump.
When the resident could tell that my head was going to explode she escorted the intern out and came back to finish the admission. This time the doctor asked what kind of pump and formula we needed. She then told me she was going to hold off until Maryam was stable and told me she'd be fed via IV for the night.
A few months later I was discussing this incident with one of Maryam's neonatologists. She is known around the hospital as "The Saint" because she's just ridiculously sweet. She told me that my job on this planet is to educate. Even if the student is someone who should already know, I have the rare knowledge of what life is like caring for a micro preemie with many issues. Since that day, I've been much more understanding.

Happy Birthday Daddy!!!

2012-02-09T14:06:00.001-08:00

The kids were very happy to scream Happy Birthday to Daddy!

Painting time!

2012-02-08T09:10:00.001-08:00

My children love to craft and painting is their ultimate favorite. I usually set up their easels in the kitchen so clean up time is easier. I had drop cloths but they're gone! Either we went through them already or I've misplaced them.
Here they are painting!

Feeding Tube Awareness Week, Day 2

2012-02-06T20:37:00.000-08:00

From their website:

Topic: Why I have/my child has the tube they have now - a highlight on the medical conditions that require tube feeding.

Maryam had 4 different feeding tubes ranging from when she was only a few weeks old up until her Mic-Key button was removed when she was 4 years old. Her first tube is called a NG tube. The NJ tube or Nasal Gastric tube is a tube that is inserted up the nose, down through the throat and ends in the stomach. This is placed without any anesthesia and can be done in the home or in the doctor's office. When Maryam first came home from the NICU she had an NG.
After one of Maryam's procedures in the NICU she had some trouble with motility, digestion and vomiting so the docs decided to place and NJ tube or Nasal Jejunum tube. With this tube, the stomach is completely bypassed and the tube ends in the Jejunum. This is so the body doesn't have to digest the food, its harder to vomit it back up and its easier to pass through the bowels. Once Maryam was stable again she went back to an NG tube.
Days before Maryam was discharged from the NICU we had a long talk with her doctors and some nurses about how we weren't ready to have a G-tube placed or have a Nissen/Fundoplication procedure done on her. So, with that decision came a ton of training. We had to learn how to place an NG tube in our little baby. Maryam was nearly five months old, but still only 7 pounds 9 ounces when she was discharged from the NICU. But I wasn't ready to "give up on her" yet, so we learned how to place the NG. Personally I wasn't ready for her to have a G-tube. I was still praying that she'd learn to coordinate her suck/swallow/breath, that her lungs would get better and that her GERD would get better.
When she came home it was a little overwhelming but we were super organized. We had a binder that we kept track of everything in. We kept track on spreadsheets of how much food she drank, how much went into the tube and how much she vomited up. We had a medicine spreadsheet. We had a poop and pee spreadsheet. We had an oxygen tank spreadsheet. We had a DME ordering spreadsheet. WE WERE ORGANIZED! I had to take her, her feeding pump, her oxygen tank and her binder with me to the doctor every week for oxygen tests and weight checks. She kept failing both.
After 2 months at home and barely a pound of weight gain and no lung improvement, we knew it was time. The docs ordered another swallow study and upper GI and the decision was made, Maryam was getting a G-tube placed and a fundoplication. Sigh. The official reason for the G-tube placement was Failure to Thrive (FTT). The official reason for the fundo was complications of Bronchopulmonary dysplasi (BPD) due to microaspirations from severe Gastroesophageal reflux disease (GERD). Maryam had surgery July 17, 2007 she was 7 month and 9 days old and weighed about 8.5 pounds. She stayed in the hospital for 2 weeks and came home with a new feeding pump, feeding pump bags, gauze, tape, rope, syringes and new medications.
Maryam took her last bottle on August 4, 2007. Arguably one of the saddest days of my life. Just typing that sentence made me tear up.
Two weeks after Maryam's G-tube was placed we took her in to have the tube removed and the button put in. The button was RAD. It made it possible for us to put the tube on and off as needed. When it was time to eat, we attached the tube, when she was finished and vented, we took it off. It was GREAT. The Mic-Key button is the brand she had. As she got bigger, she got a bigger button. The Mic-Key button and feeding tubes were the only brand we had. They worked great for her. I have no complaints. They kept my little punkin alive.
On September 20, 2010 we took out her button! Arguably one of the happiest days of my life.
On March 30, 2011 Maryam's stoma was all closed up!
Here is a post from the day of the surgery. I love the before and after shots. :)

Feeding Tube Awareness Week

2012-02-05T23:46:00.001-08:00

According to their website:
The goal of Feeding Tube Awareness Week it to spread awareness and educate as many as possible through Facebook status posts, notes, twitter, blog posts, email...basically however, you want to spread the word. The topics below are a guide. They will be posted daily on the Facebook Page but also encourage you to use them in your posts to others.

Daily Topics
Topic: Why awareness is important to my family - What would be difference for me/my child if tube feeding was better understood?

I want to start my post by recognizing what a wonderful idea this is. Maryam hasn't been a "tubie" since September 2010 and I'm extremely grateful but when she was tube fed, I always felt isolated. I know I wasn't the only mother of a tube fed child, through the magic of the Internet, I have met quite a few moms of tube fed children. But it's the little things.
I'll never forget how sad I would feel when we would go out to dinner, order our food and then when the server would ask what we wanted for the little one we'd bust out a can of Pediasure and a tube and watch the expression on his/her face change. It wouldn't end there though. There was always the people who would stare at Maryam and her tummy with her tube sticking out of her belly as they'd walk by to go to the bathroom. Or my personal favorite, the people that would flat out ask, what's wrong with your baby? Ugh, I hated that.
Sadly, the people who are aware of feeding tubes are usually only aware of them because someone close to them has had one. Whether it is an older person holding on to life, a person who is allergic to most foods, babies born with their intestines on the outside of their abdomen, or people with CF who need extra substance to stay alive, odds are you know someone who, at sometime, had or has a feeding tube. Since you're reading my blog you know of Maryam. Maryam started out with an NG (Nasal Gastric) tube because she was on a ventilator for the first 9 weeks of her life. Then when she could drink from a bottle she didn't have the stamina to get enough sustenance. Her little lungs were too weak.
After 8 months of too much vomiting, her respiratory system failing and lack of weight gain we had to make the toughest decision of our lives. We had to choose to permanently altar our daughter's anatomy. She went in for surgery only days after we discovered she was aspirating on her own vomit. She spent 2 more weeks in the hospital. At only 8 months old she had 3 surgeries, 2 hospital stays totaling 154 days and now had a new anatomy.
A feeding tube kept my little baby alive for her first 2 years and 9+ months. And she had her tube in her tummy a whole year longer, just in case. You probably know someone else who has used a feeding tube too. It's important that others are aware they're not alone. There is no reason to feel isolated. Maryam still shows everyone her scars and asks me lots of questions. I've shown her pictures! She thinks it's neat! We all think it's pretty neat that technology kept our little miracle baby around to become the great kid she is now.

Valentine Day Craft

2012-02-04T13:41:00.001-08:00

Today, like everyday, Maryam asked to make a craft. Thankfully Auntie Sarah's Valentine's day gifts came in the mail yesterday and I was stocked with tissue paper again! I had been wanting to make this craft but was out of paper, it was meant to be!
So when Maryam asked today, we hopped on this cute little craft. It's quick, easy and fun. The finished product is quite lovely too. I took a piece of card stock and drew a heart in the center. Then I took the tissue paper and folded it several times and cut 2 inch rows and cut the rows into 2 inch squares. I covered the heart in glue and showed the kids to crumple each piece of tissue paper and stick them on the glue! They had a great time!

Park fun

2012-02-02T16:53:00.001-08:00

Look at my big brave boy climbing too high, jumping too far, and sliding too fast. Seriously! Every time we go to the park I feel like I'm having a little heart attack when I see Jax do something at 2 that Maryam didn't do until she was 4. It's a tad unnerving.
Maryam is fun to watch at the park. She runs around playing Princess or Monster or sometimes combines the two. She's always meeting a new friend. Unfortunately when she's playing tag or chase with a boy Jax gets very upset. I had to stop him from trying to kick and punch a boy for chasing her. He stood in the boys path and screamed at the top of his lungs, "That's my Maryam!!! Leave her alone!!!". Then he took a swing and missed and then tried again and I caught his arm before the punch landed on the kids little face. Jax is very possessive.

Ballet/tap/hip hop class

2012-02-02T15:20:00.001-08:00

Here are some photos of Maryam, Anna and even a few of Jax at dance. I love watching her dance class. Jax too!!! He has so much fun. He can't wait to be 3 and be allowed to go to dance. :)

Disneyland!!!!!

2012-01-28T00:49:00.001-08:00

Maryam is tall enough for Star Tours!!! HOORAY!!!! Even better than M being tall enough to ride was that we only waited 10 minutes to go on it! Disneyland in January, on a week day ROCKS!!!
Brett and I each took M on Star Tours and each took Jax on Buzz Lightyear Astro Blasters. The line for Buzz was only 5 minutes! He rode it 3 times!
We hit up Pooh, Haunted Mansion, Jungle Cruise, Tarzan's Tree House, Pinocchio, the Carousel at Disneyland. After all that we headed over to California Adventure for Ariel, Monsters Inc and Muppets 3D Theater. We had a great day! We didn't have to wait in lines and the kids behaved wonderfully.

Silly pictures of Jax

2012-01-26T20:16:00.001-08:00

Jax is a ham. Here are some examples. :)

365 Photos by Jennifer

2012-01-21T20:19:00.000-08:00

In case you don't see enough of my kids on Facebook, Twitter, Instagram, text messages or my blog, I have another way for you to see them! (And other interesting things that happen in my day) I started a new blog on January 1st called 365 Photos by Jennifer. Everyday I upload a picture I've taken from my iPhone and add a caption. Some captions are longer than others but for the most part they're only a sentence or two long. So far I've uploaded everyday and I hope to continue to do so.
Enjoy!

http://365photosbymom.blogspot.com/

New Train Set

2012-01-21T02:08:00.001-08:00

Jax got this train set for Christmas. It's pretty neat! Mommy set it up and they watched it go around and around. This zip line thing is fun! They took turns putting it back.
Jax is pretty into Thomas. Just a few days ago he declared he wants a Thomas room instead of a Cars room He keeps asking for a Thomas bed! I suppose I should get on that!

Cute pictures of Jax

2012-01-19T23:26:00.001-08:00

I was looking through the pictures on my phone and realized I have some funny pictures of Jax that I should share. This level of cuteness shouldn't be hidden in a phone. They should be shared so everyone else can enjoy!

Valentine Day Craft

2012-01-19T23:18:00.001-08:00

Yesterday Maryam and Jax made a fun craft!! M loved sharpening the crayons to get the shavings. We took the shavings, put them between wax paper and I ironed it. Maryam and I drew little hearts on the paper and then we cut them out! Today Jax and I hung them in the kitchen window. He was so cute, he kept coming back and showing them to me. He's proud of the project. :)

Hiking

2012-01-18T11:20:00.001-08:00

On Monday morning we all took a hike up to Barker dam followed by some rock climbing and bouldering. Jax and I sat out the bouldering because he was cold. I'm very glad because jumping from rock to rock while holding a 35 pound 2 year old just doesn't sound like fun!
The hike to the dam was fun! Paddy and Collin are quite the climbers and Maryam wanted to do everything they did. Some times it was nerve racking but fortunately no one was hurt and everyone had fun!
Enjoy the pictures!

Bye bye Carroll Clan

2012-01-18T11:12:00.001-08:00

And they're off to Bridgeport, CA! The kids sure are going to miss playing with their big cousins. Jax keeps asking for everyone. Maryam keeps asking when we're moving too. :)
Here are our farewell photos.

PFT Course

2012-01-17T09:08:00.001-08:00

On our base here in beautiful 29 Palms, there is a physical fitness training course that is 3 miles. The route is lined with tanks, other armored vehicles and large guns. Brande and JJ took the boys and Maryam out there on their bikes to ride the course. Little Maryam did all 3 miles!!! When she didn't want to ride her bike anymore, she ran!!! Brande said she had no problem keeping up with boys. I'm so proud of her. :)

Maryams latest craft

2012-01-14T23:06:00.001-08:00

Maryam got a DIY Tinker Bell stepping stone for Christmas from her Auntie Brande and Uncle JJ. On Wednesday we made the stone and on Friday we painted the stone. She did a great job and had so much fun doing it!!! She wants to make another to send to her cousins Charlie and Addison.

Maryam started ballet/tap/hip hop dance

2012-01-12T09:33:00.001-08:00

Maryam started dance class again! Now that she's 5 years old she's moved from the 3 and 4 year old class to the 5 and 6 year old class. At first I was a little worried how she would measure up compared to the others. I prepped her about being in a "big girl dance class" and told her she had to pay closer attention to Ms Drea.
Maryam did really well! She is only slightly smaller than the other girls and she did a great job of listening and paying attention. Mommy is proud.

Maryam singing

2012-01-10T21:52:00.000-08:00

Maryam started ballet tonight!!! I'll post video of that later. This video is from after ballet when Christi and I took the girls for ice cream at The 29 Palms Inn. (we had wine, they had ice cream) The musician asked if anyone had any requests and Maryam ran over to request Its a Small World. Well the musician asked Maryam if she'd like to sing it and Maryam said, Yes!!! Here is the end of the song. I hit record way too late. But I promise, she was as cute as could be. The patrons LOVED her. Proud Mommy Moment.

Cupcakes

2012-01-10T15:17:00.001-08:00

Daddy made cupcakes and the children LOVE them!!!

The Carroll Clan is back

2012-01-10T15:16:00.001-08:00

Brett's sister and her husband are back from Okinawa. The kids have really been enjoying hanging out with their cousins!!
Here are some pictures of the kids playing together and of Maryam and Jax wearing some of the clothes Auntie Brande and Uncle JJ brought them.

First trip to Disneyland in 2012!

2012-01-07T23:37:00.001-08:00

Chrissy and I took our kids to Disneyland today in her new "fancy old lady car". We always have a great time together and so do the children.
We spent the first 4 hours together at California Adventure and finished the night separately. She and her children went to Tron Dance Party while my kids and I hit the kiddie rides at Disneyland. We left at 7 before it got cold. The cold air causes Maryam to have Asthma attacks.
It was another great day at The Happiest Place on Earth.

75 degrees in January

2012-01-06T20:46:00.001-08:00

The children were outside playing by 10:30 am today! They were ready for the water table too! Today Maryam and Jax asked for me to put the bath tub colors in the water table. Jax picked pink and Anna thought it was really cool. So I set up both water tables and put the color changing tablets in each and they had a blast.

New Years Eve Pajama Jam

2012-01-04T20:07:00.001-08:00

We thought it would be fun to have a kid friendly party to ring in the New year. Our idea was a hit! We had a pajama jam!!! We all wore our pajamas, ate breakfast food and danced the night away!!! The kids stayed up late playing with each other, dancing, singing karaoke, blowing horns and banging on pots and pans!!!!
Happy New Year!

Christmas Morning

2012-01-04T19:49:00.000-08:00

Milk and cookies for Santa.

What our tree looked like before the children woke up.

Jax cannot believe how many presents there were!

Maryam loves her Little Mermaid doll. Mommy does too! She's just so pretty!!!

Maryam's "iPad" from Yaya. She LOVES it.

Maryam and her goods.

Maryam hugging her "wind up toy giraffe" from Santa.

Jax and his Washington football from Aunt Helen and Uncle Bob. Arguably one of his favorite gifts!

Maryam in the slippers she got from Auntie Brande and Uncle JJ.

Jax in his thinking cap from Auntie Brande and Uncle JJ.

Jax's Story Time book from Yaya and Papa.

Jax opening his bike from Auntie Karen and Uncle Tom.

Maryam playing with her wings, tiara and wand from Auntie Lynn and Uncle Justin. Jax, not being out done, found some old wings, a Rapunzel tiara and his wrench and was equally pretty.

Mr. Bishop. ;)

Christmas with Momom and Popop

2012-01-04T11:49:00.000-08:00

The spread.

The tree.

The children.

The presents.

The curiosity.

The excitement.

The opening.

A Tinkerbel.

A Pooh.

The tearing.

A Barbie.

The Grandparents.

The DRUMSTICKS. Really? Yep... Thanks Popop!

The show off.

The anticipation.

The family.

More Christmas Baking

2011-12-29T15:56:00.000-08:00

Jax LOVED these. They combined a few of his favorites! Here I took a pretzel, put a Hershey Kiss on top of it and threw it in the oven for about 5 minutes on 175 degrees.

After I took them out I pushed an M & M on the Kiss and stuck the pan in the refrigerator. After about another 10-15 minutes I took them out and left them at room temperature for another 10 minutes. Once they returned to room temp I bagged them up for the kids' friends and Maryam's teacher aids at school. Quick, easy and most importantly....YUMMY.

On Christmas night I made a variation of these. Instead of Kisses and M & M's I used Rollos and Pecans. And instead of 175 degrees the over was set to 350 to melt the caramel. They were like mini Turtles. That's more of a grown up snack. YUMMY.

Last Trip to Disneyland for 2011

2011-12-18T21:08:00.001-08:00

Around 10am this morning it occurred to me that we won't be able to go back to Disneyland before 2012 because of Brett's wonkey schedule. So he suggested that we just go today! So off we went!
We decided our best bet on avoiding huge crowds was California Adventure. We were right! Our longest wait was 45 minutes for Toy Story Mania and that's the standard wait time for that ride.
The children were able to get on all their favorite rides and we still had time to get over to Small World before the temp dropped and an asthma attack started. Go us! We even picked up Jax's last Christmas present, stuffed up Gonzo.
Enjoy the pictures!

Inside of Small World at Christmas Time

2011-12-18T20:43:00.001-08:00

Small World at Christmas is fun. My favorite part is that you don't have to suffer through that song for the whole ride! They incorporated Christmas tunes throughout the ride.
Enjoy the pictures!

Its a Small World

2011-12-18T20:31:00.001-08:00

After spending the day at California Adventure we took the children over to Disneyland to ride the train and go on Small World. Jax loves both and they didn't get to ride either of them last week. Small World wasn't running both times we went over there. But tonight they got to go on both!
When we got off of the train we got in line for Small World immediately. Their winter lights show started and it was AMAZING! They made it snow! We got snowed on! Maryam loved it!!
When the snow stopped the light show began! I tried to take pictures but I'm not sure my cell phone camera does it any justice and I forgot my camera! Super lame.

Christmas Baking

2011-12-18T10:51:00.000-08:00

Maryam cutting out some cookies.

Jax eating M&M's. He decided we didn't need them for decorating, he could just eat them!

The only M&M's I got to use for decorating. The rest were eaten up! So I got out some chocolate chips....those didn't last long either!

Jax took off with them and headed to his table to eat them and watch TV.

Some of the cookies. The children decorated most of them. They did a great job! Most importantly they had fun.

They taste pretty good, which is surprising since I made them. I'm trying to embrace this whole Domestic Goddess thing. I might have to except that I'm not a Domestic Goddess, just a regular ol' domestic person. Lame.

Jax and his favorite Thomas cookie. He made 2 for his cousins too.

Maryam with her spaghetti face and her "M" cookie. That one was her favorite.
On this day our 25 Days of Christmas was to bake cookies. It was fun. I really need to work on this whole baking, cooking thing though. I love to cook, but I'm not a fan of baking. Thankfully Brett loves to bake. But Brett isn't always home, I am. So, I'm going to do my best to learn to enjoy it. Next up we have more cookies and some candy. We'll see how it goes. I need to remember that the important thing is the children enjoy baking with Mommy, so Mommy will enjoy baking with them.

More Easel Pictures

2011-12-18T10:38:00.000-08:00

Maryam's Easel

2011-12-17T23:26:00.001-08:00

Maryam got an easel (amongst other GREAT toys) for her birthday. She and Jax LOVE it. They are my future artists! She especially loves drawing with Mommy. Jax, on the other hand, doesn't enjoy sharing with anyone! So...we got him one too. He'll be getting it for Christmas if I can stand the bickering for one more week.
Here's some Maryam and Mommy art work.
I have loads more pictures to post and plan on posting them soon!

Disneyland Birthday Trip

2011-12-13T10:18:00.000-08:00

Maryam said, "Mommy! Take a picture of me kissing Jax!" I'm not going to say no to that!!!

The family getting ready to walk into the park.

Yaya, Jax and Maryam.

Me and my babies.

Eric and Jax.

Mommy and Maryam.

The family waiting in line for Buzz Lightyear.

Maryam and Eric.

Auntie Kathy and Yaya.

My children on Nemo.

My children on the carousel.

Pluto with reindeer antlers on! Not going to say no to that!

Me and my babies waiting in line for Ariel.

Dinner! Probably the best dinner I've ever had at Disneyland. We ate at the winery and the food was GREAT! Best part it had table service, no crowd, it was indoors and the children ate!

My and my children before we left the park. It was getting really cold and the cold makes Maryam have an asthma attack. So, we took off and headed home while the rest of the family enjoyed some big kid rides!

Pictures from the Rapunzel Birthday Party

2011-12-13T10:03:00.000-08:00

Austin William, Leanne, and Austin posing for a picture!

Jax, Ace Fenderbender and Christi posing for a picture...so cute!

Us with Momom and Popop posing for a family picture.

The Rapunzels posing by the Christmas Tree!

A hug shot.

BFFs and their baby girl BFFs.

My family.

Rapunzel Birthday Party, Part 4

2011-12-13T09:57:00.000-08:00

All three Rapunzels! Madeline, Maryam and Anna all dressed up like Princess Rapunzel!

The Princes, or brothers of Rapunzels eating their pizza!!!

Baby BFFs eating their pizza.

Mommy's great idea to release "lanterns" into the sky. Mommy decided that real fire lanterns was a BAD idea. (Last summer Chrissy and I released a real fire lantern into the sky one night and ended up catching the desert on fire. Thankfully we put the fire out pretty quick!) So, I saw this idea on Pinterest to release balloons instead of lanterns. So, gold balloons is a nice safe alternative and the children loved it!!

Look at their faces!!!! I love this! They're so excited!!!!

Rapunzel Birthday party, part 3

2011-12-13T09:30:00.000-08:00

The Presents!!!! Maryam got lots and lots of Disney Princess toys, Tinkerbel toys, clothes and games!! This was the first time she has ever been excited about opening presents. She tore off the wrapping paper with gusto! So much gusto that you didn't want to be too close because you might get hit!

Maryam also LOVED all of her cards! Especially the cards that had music come out of them. She got a card from Anna, her BFF, that had a sock puppet in it! How great is that?

She squealed with delight when she opened the fairy collection that Auntie Karen and Uncle Tom got her.

This card has a bedroom door hangar in it.

Her Lalaloopsy doll from Mommy and Daddy.

The sock puppet! Ha!

Her first scrapbook kit! I can't wait to sit down and make a few pages with her! This one came from Auntie Brande and Uncle JJ.

She had a GREAT time opening all of her gifts!

Rapunzel Birthday Party Part 2, The decorations

2011-12-10T23:33:00.000-08:00

This 22 foot braid took me a cool hour and a half to create. I was at my wit's end by the time I finished. "Tangled" took on a whole new meaning for me by the time I was through. SERIOUSLY. I was running up and down the hallway cutting yarn. Maryam tried to help and Jax, well Jax is Jax. I ended up finally finishing it when Yaya got home. She was able to keep a hold of the end while I tried braiding 22 feet of yarn.

Here is the table of food. I thought it would be cute to serve all the food in skillets! If you've seen the movie, you know that Rapunzel's weapon of choice is a frying pan! So, I took it and ran with it! Fun, right?

In the picture above and below you can see the braid winding through the house. It starts outside (I forgot to take a picture of the door) and then ends up right above this "WANTED" poster of Flynn. I thought it was really cute and totally forgive the yarn for nearly causing me to have a panic attack.

The flags! My goodness! I made all of these flags and strung them up. First I hand drew the sun. I made it WAY too big though. So I shrunk it by 50%, put 4 on a page and copied it on to yellow paper. The cutting part is what took forever. Fortunately Brett has coworkers that can be paid with fudge and they were generous enough to cut the majority of the suns out for me. The pink flags spell out "Happy Birthday Maryam". That was a last minute idea. By last minute, I mean I started it at 3:15 and the party started at 4. Lame, I know. My hair and makeup suffered for the banner. You'll see in my next post what I mean.

I couldn't find favor bags so I got creative and made my own. The only thing left in the store of "Tangled" theme party stuff was stickers. So, I bought a package of stickers and decorated favor bags and cups! I couldn't find cups either, but I made due. As for the Pascal party blowers, I found this idea on the Disney website! They had a template that I didn't bother to download because it was just too easy to waste the ink. They're made from craft foam, glue gun, circle hole puncher, a Sharpie and party blowers.....easy peasy.

Maryam's Tapunzel Birthday Party, Part 1, the birthday cake

2011-12-10T23:18:00.000-08:00

Brett wanted to make Maryam's birthday cake look like Rapunzel's tower. At the very least, he wanted it to look as if the cake was inspired by Rapunzel's tower. He started building and decided that he needed "more cakes."

He went front 8 cakes to 11 cakes. And I'm pretty sure he would have gone up to 14 cakes if he didn't have to be at work by 5am!

My cousin Eric was joking about all of the tools involved in making this cake. There were 5 wooden dowels, a cake saw, a wood saw, and a drill. I'm not entirely sure that was it, but I know I saw all of those. ;-)

Brett couldn't figure out what to use to make the steeple and I suggested a party hat, which we didn't have. So, what's the next best thing....? Yes, a funnel! Ha! Hey, it worked!

By 2am, the cake was finished! Poor Daddy only got 2 hours of sleep last night! But he will do anything for his daughter. (And we don't call him Bretty Crocker for nothing!)

Happy Birthday Maryam!!!

2011-12-09T16:12:00.000-08:00

If you've read my blog for a while, you know that Maryam's birthday is one of my harder days. Its funny because as time has passed, this day has become much easier to celebrate. I no longer look at Maryam as the baby that almost didn't make it. Now I look at her as the child who is living the life that some thought she might not get to!

Here's a look at Maryam through the years.
First birthday!
Above we have her 3rd, 4th and now 5th birthdays! I remember she was sick for her 2nd and 3rd birthdays. I can't seem to find her pictures from her 2nd birthday, MOMMY FAIL.

My Maryam

2011-12-08T18:57:00.001-08:00

Watch "Maryam's SOTD presentation" on YouTube

SDSU Football game

2011-12-08T00:05:00.000-08:00

Popop, Momom, Jax, Maryam and Daddy sitting in the seats watching the field fill up with the band, cheerleaders and football players.

It was a cold night! Everyone is bundled up.

Love my family.

Maryam had her head stuffed in the popcorn bucket. This was the 2nd bucket of popcorn the children had eaten.

Here Maryam is posing for a picture. She said she was "too tired to stand." Ha! Silly girl. We ran off to buy Daddy a Christmas present while he was chit chatting with Jarrod. (A friend from college) Both Maryam and Jax did REALLY well at the football game! I'm so happy they were able to sit there and watch! Of course it helped that SDSU scored 7 touch downs! Every time they scored a touch down fireworks were launched into the air! Jax isn't going to say no to that.

NICU visit

2011-12-04T23:06:00.000-08:00

Saturday we took the kids up to the NICU to visit with the amazing nurses that helped save their lives. They're all so wonderful!!!! We're so lucky and blessed to have had them in our lives. They helped save my babies' lives. They were all excited to see how well they're both doing now. Maryam showed off her belly, as usual and gave hugs to everyone she saw. It sure is special, the bond a parent forms with the staff that takes care of their baby when they can't. I'll never forget any of these people. THANK YOU FOR ALL THAT YOU HAVE DONE AND CONTINUE TO DO EVERYDAY.

25 Days of Christmas

2011-12-04T22:54:00.000-08:00

Close up of my little bags.

The line of 25 bags that I strung down the hallway.

Maryam reaching for a bag.
So, I decided to do this "25 Days of Christmas" that so many wonderful, crafty, moms are doing these days. I'm not sure what other moms put on their list of 25 things, but I had a really hard time coming up with 25 activities! I put things like bake, go to the park, hiking, meet Santa (today's thing), go to a football game (yesterday's thing), go hiking, go to Disneyland, make a Christmas ornament, make a Christmas craft....you get the idea. Well, I had a hard time coming up with 25 cheap, easy activities and then making sure I put them on the day that I could make it happen! I elicited help from my friends and that was helpful! Thanks friends. Maryam enjoys waking up every morning and looking for Luke and then having Mommy read what's in the bag for the day. So far, we haven't had a miss. She's liked them all.

Elf on the Shelf Luke's December 1st arrival

2011-12-04T22:42:00.000-08:00

First there was a ring of the doorbell. Then, there was a package on the front porch!

Then Maryam saw that her name AND Jax's name were on the box. She was very excited that both of their names was on the package!

Maryam volunteered to open the box. Jax was nice enough to stand idly by and watch.

Look at that expression! Priceless. She was SO incredibly excited that Luke came she couldn't contain herself! She had been talking about him for days! Last week there was a cartoon special based on this little guy and she and Jax had been talking about his arrival ever since! They watched the show daily in anticipation.

After they got Luke out of his box they watched the cartoon 4 times in a row. Jax danced to the music and Maryam sang along with the lyrics. It was super cute. Even now they still watch the cartoon daily.

Maryam's tree

2011-12-04T22:37:00.000-08:00

Maryam decorated her Christmas tree already. Unfortunately, its the only Christmas decoration we have up yet! Mommy is SERIOUSLY lagging in this department! Its just hard to decorate when we're never home! We're always going some where or doing something! Not that I'm complaining! I love going places and doing things!!!!! And for that, I sacrifice decorating. ;-)

Thanksgiving 2011

2011-12-04T22:32:00.000-08:00

Here is Maryam and Jax enjoying the beautiful view of Saddleback Mountain from Aunt Miki and Uncle Crag's backyard. This view is AMAZING. We stayed outside until it was just too cold to stay out any longer.

Above we have Maryam with Aunt Miki and below we have Jax trying to get close to the dog. Those dogs scared the crap out of Jax. They barked at him until he cried! It was particularly bad if the dog got between Jax and Mommy!

Maryam posing for the camera...little ham.

Maryam with Popop and Momom.

Jax with Momom.

Dinner at the grownups table.

Dinner at the kids table. And Jax lounging on the couch.

Didn't last long...he fell asleep and went to bed.

Maryam hamming it up again! Below we have Aunt Pami and cousin Marcy.

Katy Perry Gives Thanks

2011-12-03T10:21:00.000-08:00

The children!

BFF's posing by the Katy Perry poster outside of Staples Center. Not sure what is up with Maryam's gansta pose, but I think its hilarious!

BFFs.

Yaya, the one who made it all happen!

Maryam photo bombed this picture!!! Ha!

So, Yaya saw on the Ellen Show that Katy Perry was doing a free concert the night before Thanksgiving at The Staples Center. She signed us all up to win tickets to go see her! Well, my mom, Super Yaya, is one who actually won the tickets! So, she had 4 tickets. Christi went on ebay and found 3 more so that we could all go! It was pretty rad!

Preschool Thanksgiving Feast!

2011-12-03T10:09:00.000-08:00

Handsome Jax. Its hard to believe he's only 2, he looks so much older than that to me. Maybe because he's a giant.

Sibling love.

My Maryam.

The Pageant.

Baby BFFs.

Commune love.

A sight that never gets old for me....Maryam eating.

S'mores!

2011-12-03T10:05:00.000-08:00

Yesterday I caught up on October, so I guess this morning I'll try catching up on November! I really wish I wasn't so far behind on this blog. Super lame.
One day last month I said, hey! Let's make s'mores! And my idea was received quite well! The children got a kick out of a fire in the fire pit and they loved eating outside, they always do!

Halloween Gingerbread House

2011-12-02T09:02:00.000-08:00

YUMMY!!!

Isn't it cute?

Trick-or-Treating

2011-12-02T08:59:00.000-08:00

Princess Ariel.

My babies. I just love them so much!!!!! Maryam as Ariel and Jax as Brobee. ADORABLE.

Nanners and Maryam...looking good!

Ian, Jax, Anna and Maryam. Ready to go get some candy!

Costume Parade

2011-12-02T08:54:00.000-08:00

Maryam's preschool had a costume parade. Jax had to participate, of course. Maryam was Ariel and Jax was Brobee. They both had a great time. All the children looked fabulous.

Pumpkin carving party

2011-12-02T08:49:00.000-08:00

Here is Maryam squishing some guts. She wasn't as into it this year as she was last year.

Christi being....Christi.

Nanners showing off her goopy hands.

Look at all those pumpkins!!! I think between the three families we had over 10 pumpkins!

Daddy making one of the three Jax Skelington Jack-O-Lanterns we had this year.

Maryam's first sleep over!

2011-12-02T08:40:00.000-08:00

Our art project for Maryam's sleep over was painting pumpkins! Painting pumpkins is one of Maryam's favorite fall crafts. She would paint and glitter every pumpkin on earth, if we had them!

Anna painting her pumpkin.

Maryam painting her pumpkin.

Jax painting.

The girl tea party. Jax was sent to the store with Daddy so the girls could get a little more "girl time."

It didn't last long. As soon as he got home, he went and got his sleeping bag and set up right next to Maryam.

All in all, they had a wonderful night.

Oak Glen Trip with Popop

2011-12-02T08:27:00.000-08:00

Here are some photos of the trip to Oak Glen with Popop. I wasn't there so Daddy was responsible for the pictures. ;-)

Baking with Yaya

2011-12-02T08:25:00.000-08:00

Yaya and Maryam were baking some yummy apple dessert using the apples they got up at Oak Glen with Popop. The dessert was super yummy. I have no idea what it was nor did I take a picture of the finished product. As for Jax, well, that's Jax. He was playing in a tub while Daddy watched the football game.

Maryam's soccer trophy

2011-12-02T08:17:00.000-08:00

I FINALLY downloaded all the pictures on my camera. I'm ashamed to tell you that I had photos on there that dated all the way back to the beginning of October! My goodness. I guess all this sickness has gotten the better of me. Hopefully we're on the backside of a very long battle. If its not Maryam, its Jax, if its not Jax, its me! Yikes. I'm praying that December through April are better than last year. So far, its been rough.
Anyway, here are some photos of Maryam getting her soccer trophy. She was so excited! Jax kept asking where his was, but in the end was happy for Sister.

World Prematurity Day Breakfast

2011-11-24T09:27:00.001-08:00

Brett and I took our preemies out for breakfast to celebrate the day. We had Starbucks. It was fun! A Marine thought Jax was 4 years old! That was a great compliment for me to hear. After years of people guessing Maryam's age a few years younger than she actually is, it was a nice change of pace. :-)

Pictures

2011-11-24T09:20:00.001-08:00

My cutie babies.

Soccer Trophy

2011-11-24T09:15:00.001-08:00

Maryam received a trophy for completing her first soccer season! Team Del Taco was dun to be a part of. Her coach, Coach Dion, is a nice guy and Maryam loved playing on his team.

Jax

2011-11-11T05:49:00.001-08:00

Jax is my very rambunctious 2 year old baby boy. Jax came into the world at the gestational age of 33w. He weighed 4 lbs, 4 ozs and was 19" long. He was in the NICU for 13 days before getting to come home.
Today Jax is the picture of a healthy boy. He loves cars, trains, helicopters, planes, trash trucks, school buses and all things Muppets. He can sing his abc's and count to 17. He has a laugh that will melt your heart and definitely make you laugh along with him.
Jax had his 2 year old well baby checkup yesterday. He weighs 33.5 lbs and is 37.5" tall. That puts him at 95% for weight and 80% for height. That's quite a growth spurt! He's always been in the 50% since he was about 6 months old. He weighs more than Maryam and she's less than a month away from being 5! He's developing wonderfully.
He's talking up a storm! I love when he says, "huga me Mommy" and reaches for me to pick him up. I love at bed time when he points to the side of his bed and says, "sleep with me Mommy." I love hearing him singing the Muppet Show theme song at the top of his lungs, it never gets old and I crack up every time!
I hate hearing him say, "Mommy go to work?" And I despise the tears that start rolling down his red puffy cheeks when I say yes. Then there's the heart break of hearing, "I miss Mommy, don't go to work." Those reasons along with Jax becoming too hard for Yaya to take care of are a few of the reasons Brett and I have made some lifestyle changes. Most recently my mom asked us to move back into her house. Next up, more change. I'll get back to that later.

CHOC Feeding Clinic Reunion

2011-11-07T10:41:00.001-08:00

Saturday we took Maryam to the inaugural Feeding Clinic Reunion. It was so fun to see her doctor, nurse, therapists, psychologist and social worker that helped Maryam become the eater she is today. There were many families there, many other preemies too! There were games, food, prizes and lots of pictures.
Lee, the social worker, told us that the hospital has given the team more funding! There are now 2 teams of therapists and they see two patients at a time! That's GREAT NEWS! Before they were only able to see 8 or 9 patients a year. Now they're going to have 2 patients year around! So far there have been 60 children go through their impatient clinic!
One of her therapists told us that Maryam is still the youngest child to go through the program. She said that there have been a few that were around the same age but they weren't as mature and didn't do as well. Proud Mommy moment there. :-)
Here are some pictures for the day. Enjoy!

Micro Preemie

2011-11-04T23:53:00.001-07:00

I've done everything I was ever told to do when it comes to keeping my kids safe. I sequestered Maryam for every winter, except this year. I did let her participate in more things last winter, than the winter before, but its been a slow process. Her first few years I didn't let anyone see her. I had to protect her from everything. Practically anything could kill her. The common cold wasn't just a cold for Maryam. For Maryam, catching a cold lead to more oxygen, more medications, most often bronchitis, bronchialitis, RSV, pneumonia and/or hospitalization. Winters have been rough for her. It isn't uncommon to hear me say, "I hate winter" or "I wish we could skip November through April".
For Micro preemies there are things in life that are just going to be more difficult for them than other children. I've known this from the beginning. We were taught early on what to look for and how to help prevent anything else from coming up. Things we learned to look for, or have already experienced are learning problems, hearing and vision problems, respiratory problems, feeding and digestive problems and Cerebral Palsy. Thankfully we managed to dodge a CP diagnosis, we had to fight until she was 3 years old, but she finally "grew out of the signs". You can read some of my CP rants here.
Hearing and vision problems are kind of interesting for us when it comes to Maryam. Brett has HORRIBLE eye sight. Terrible. We've been told that vision is hereditary. So, yes Maryam had ROP, yes she had surgery to repair the ROP, but she has no major side affects from the ROP and no longer has any symptoms of the ROP. She does have vision loss, but that could be hereditary. She doesn't have peripheral vision, but that's because of the ROP laser surgery. As for her hearing, she has had some hearing loss in her past. All of that has been linked to her multiple ear infections and is expected to be temporary. I'm inclined to believe that since her most recent hearing tests were normal. In case you don't know what ROP is, you can read about it here.
Feeding and digestive problems. If you've read my blog before, you know how important feeding is to me. You know how I struggled with feeding Maryam for years. You know that 4 weeks at the inpatient feeding program at CHOC changed our lives. All this goes without saying. Feeding is my passion. Every time Maryam takes a bite, chews it up, and swallows, a little miracle takes place. The extent of Maryam's oral aversion is not common. Its very rare that a baby or child just cannot eat. But Maryam is living proof that it does happen, but more importantly, she is living proof that it can and will get better.
Moving on to learning problems. I am happy to report that Maryam hasn't shown any learning problems. She has a TERRIBLE memory, but that could be inherited from me. We were told to put her in preschool as soon as it was medically safe to do so. Her pulminologist put her on a prophylactic dose of antibiotics to help keep her safe from the feared pneumonia. So far, so good. Research shows that early intervention can help prevent learning problems. Maryam started getting early intervention at home when she was almost a year old. Once she turned 3, the great state of California deemed it unnecessary anymore. So, once she was old enough for preschool and healthy enough, we enrolled her. Her teachers all say that she's very bright! Actually, "She's very bright, and very matter-of-fact about it." were their exact words.
So, that's a little lesson on the affects of being born as a micro preemie. Tomorrow I'll go over a new study that shows, being born as a micro preemie has the potential to affect her for the rest of her life. We will be in Orange County tomorrow for a reunion at CHOC feeding clinic. It should be fun to see all of Maryam's feeding team again! Weather permitting, we'll be hitting up Disneyland afterwards.

Holding a Preemie

2011-11-03T21:17:00.001-07:00

Holding your baby is one of the most precious and amazing experiences a mother can have. Holding a preemie in the NICU is something entirely different. Its still very precious and amazing, but on top of those feelings you also experience stress, anxiety and fear. The first time I held Maryam she was just over 7 weeks old and still on total life support. The nurses had to tape her ventilator tubes to my hospital gown so that Maryam would remain stable enough to hold. I was only able to hold her for a few minutes before the stimulation was just too much for her.
I wanted to look only at her. I wanted to remember every little wrinkle of her face. I couldn't believe I was finally holding her! But my eyes kept wandering towards the monitor. The alarms were buzzing around me. The nurses and doctors and Brett were all so excited to see that the baby was no longer in the box! And I know they had everything under control. They were there watching in amazement as a baby who was so close to death so many times, was finally out of her box and in her mother's arms. My eyes kept wandering back to the monitors. It was difficult to train my eyes to watch her, listen to her, not to watch the numbers on the screen or hear the alarms buzzing in the air.
Here is video of the first time I held Maryam. The moment in time is one of my favorites. Enjoy.

For my daughter

2011-11-02T19:00:00.000-07:00

On April 30, 2008 we celebrated Maryam's one year anniversary of being a NICU graduate. As time passes, I don't find celebrating that day as important as it once was to me. That date isn't any less important, honestly I feel its equally important to her birthday. I have worked hard to make her birthday a happy occasion. For the first few yearsof Maryam's life her birthday was a sad day for me. (Birth Story Part 1, Birth Story Part 2, Birth Story Part 3) The day she was born was the most traumatic day of my life, so I had trouble finding the good in it. As time passes her birthday is easier to celebrate and her NICU graduation date has become easier to forget!

On the anniversary of her graduation I wrote my daughter a poem. Here it is...

One year ago we brought you home
So afraid, so much unknown
A list of meds 10 items long
Wondering what to do if something went wrong
You had been in that home since December
You were so weak and small, we don’t want to remember
Celebrating each new day
We wanted you home with us to stay
When that day came, with it came fear
Wondering what would come in the following year
You had already been through more than your share
We didn’t know how much more you could bear
Two surgeries under your belt
We wondered how much pain you felt
You had started to eat and gained some weight
You were growing at a steady rate
Your due date passed like any other day
You were still on steroids; we knew there was no way
You weren’t ready and neither were we
It was still going to be a while, we’d have to wait and see
Five months passed by so very slow
When finally the day came when it was time to go
The doctors and nurses were happy to see
That Mommy, Daddy and Baby finally made three

World Prematurity Awareness Month

2011-11-01T22:10:00.001-07:00

As many of you know, Prematurity and Prematurity Awareness are two things I'm very passionate about. When anyone asks to hear Maryam or Jax's birth stories, I'm more than happy to share my experience. Those experiences are part of who I am today. Without having gone through all I've been through as a mother, I wouldn't be half the woman I am today. I use to wonder, "Why God? Why me? Why this baby?" Now I say, "Thank God. Thank you for giving me these babies." I wouldn't have it any other way.
If I could take away all of their pain, I would. If I could take back every needle prick, tube insertion and scar, I would. But since I can't, I chose to love every single scar those needle pricks and tubes made. I make beautiful scrapbook pages of their NICU stay. I make the most out of every situation. I learn from everything they've gone through. I have done and continue to do what any mother would do, love. I'm GRATEFUL God made me a preemie mom, I wouldn't have it any other way.

How God Chooses Preemie Moms
by Anonymous

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his
instruments for propagation with great care and deliberation. As he
observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles.
"Give her a preemie." The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

World Prematurity Awareness Day

2011-11-01T00:01:00.000-07:00

Above is Jax on the day he was born. Pink as can be and without any oxygen. Perfect.
The picture above is to show you some perspective on just how small Maryam was. She was roughly the same size as Brett's hand.

Maryam on the day she was born. Her skin was pretty much transparent. The diaper that looks so giant on her is actually the size of a maxi pad.
Jax holding Brett's wedding ring. He was small.

Today is World Prematurity Awareness Day. It is a day that I hold very near and dear to my heart. Being the mother of a preemie puts me in a different circle from other mothers. It seems like other mothers don't truly understand what having a preemie really means. I can't tell you how many times I've heard a pregnant mother say, "I just wish this baby would be born already!" When I ask how far along she is and she replies with something like, "7 or 8 months" I get so bent. I want to scream at her and tell her what could happen to her baby if she had it "already."
Most women are pregnant for 40 weeks or 9-10 months. (I know that 40 months seems like 10 months, but somehow its not always.) 7 months is 28 weeks, 8 months is 32 weeks. Maryam was born at 25 weeks or just over 6 months. Jax was born at 33 weeks, or just over 8 months. Only the mother of a preemie would describe a pregnancy in weeks instead of months or trimesters. With Maryam, I didn't even get to my 3rd trimester!
How being born premature has affected Maryam:
Born at 25w 2d
1lb 10ozs, 750 grams
13" long
On a ventilator for 8 weeks, high frequency and traditional
CPAP for 4 weeks
High flow oxygen for 3 weeks
Low flow oxygen until she was 21 months old
1st surgery, heart surgery at 3 weeks old, PDA ligation (which caused vocal cord paralysis)
2nd surgery, laser eye surgery at 8 weeks old to repair Retinopathy of Prematurity (ROP brought on by the high frequency ventilator)
Several blood transfusions.
Hundreds of chest x-rays. (Literally hundreds. I stopped counting at 157)
Dozens of brain ultrasounds.
Respiratory Distress Syndrome diagnosis changed to Chronic Lung Disease/Bronchopulmonary Dysplasia diagnosis (brought on by the high frequency ventilator)
Severe Gastro Esophagial Reflux Disease GERD, given several meds to try to get her to stop vomiting. Vomiting caused micro aspirations which prevented her lungs from developing.
3rd surgery was a fundoplication and gastrostemy tube (G-tube) placement. This changed Maryam's anatomy so that she was no longer able to vomit and her stomach was permanently attached to her abdominal wall.
She eventually stopped taking all bottles and was 100% tube fed before she was 9 months old.
Starting when Maryam was a year old she was in physical therapy and occupational therapy twice a week. She also had once a week weight checks until she was 2 years old.
Maryam has had about 9 pneumonias.
She has had RSV once, however we didn't tell anyone because we were afraid everyone would freak out. She had been getting Synigis shots all winter, she got them for 3 winters. We were shocked she had RSV, but happy that her pulmonary doc felt we could treat her at home.
She was hospitalized once for pneumonia and flu B.
Maryam is small, started out small, so I guess it makes sense. She weighs 32 lbs and is 41" tall. She wears glasses. She uses an inhaler a few times a day. She is currently on 5 medications, 4 for her lungs (BPD and Asthma) and 1 as an appetite stimulant.

Affects of Prematurity on Jax:
Born at 33w
Weighed 4lbs 4ozs
19" long
Spent 13 days in the NICU
No oxygen support
NG tube for a few days
During his second winter he had RSV and bronchialitis several times.
Suspected asthma.

As you can see, the differences between the two are staggering. Micro preemie versus regular preemie, I've lived both worlds. The doctors told me that every minute, hour and day that the baby can stay in the womb helps. There is an 8 week difference between my two preemies. Those 8 weeks made a world of difference.

If you'd like to read my World Prematurity Awareness Day blog entry from last year, you can find it here.

Trick-or-Treat!?!?

2011-10-31T22:31:00.001-07:00

Ariel and Brobee

Happy Halloween!!!

2011-10-31T15:55:00.001-07:00

I'll post costume pictures later.

October Disneyland Trip

2011-10-24T20:40:00.000-07:00

Here are Jax and Maryam in their Halloween shirts standing in line for the Winnie the Pooh ride.

After the ride I took the kids over to get their pictures with Tigger, Eyore and Pooh. Unfortunately only these two are clear. The others are blurry. :( Oh well, maybe next time.

Here are Maryam and Jax in front of the horseless carriage at the Haunted Mansion. It was all decked out for Halloween. They do a whole Nightmare Before Christmas thing at the Haunted Mansion. Maryam is a HUGE fan of the movie and really looks forward to this ride at the holidays. The rest of the year she calls the ride "Jack". Now Jax calls the Haunted Mansion ride "Jack" too.

In Woody's Roundup place they had a pumpkin carver and photo stations. Of course my babies had no problem posing for the camera.

Here's their scary faces. :)

Pumpkin Patch Festivities

2011-10-24T20:32:00.000-07:00

A Mickey Mouse Club House bounce house is a fabulous idea! It seriously combined two of my children's favorite things!

More bounce house fun. I took Maryam's glasses off. I was afraid she would go into a bounce house and come out without them! She's already broken one pair of her new glasses, the last thing I need is for her to break another pair or lose them!

My cutie babies coming out of a bounce house tunnel, train thing.

Jax about to ride off on a quad around the pumpkin patch. I rode behind him to make sure he didn't fall off.

My babies on the straw castle.

Pumpkin picking!!!

2011-10-24T20:13:00.000-07:00

My cutie babies in their Halloween outfits for this year. Auntie Brande sent these. I think they're ADORABLE!

Daddy wheeling them out to pick their pumpkins.

Maryam found a green pumpkin. She thought that was amusing.

Jax would wander out into the pumpkin patch and then I'd hear, "Mommy! I'm stuck!" He wouldn't know how to get back out of the pumpkin patch. He's such a cutie.

Maryam found her "Maryam size pumpkin." Love her.

Here's my cutie boy!

So what its bigger than him....do you think he cares? Nope!

Me and my babies.

Palm Springs Air Museum

2011-10-24T20:06:00.000-07:00

Popop took us to the Palm Springs Air Museum a couple of Saturdays ago. The kids had a great time and Jax was in awe the whole time.

Here are the kids in front of a model aircraft carrier. Or as Jax would say, "A big boat!"

Here is Popop, Daddy, Jax and Maryam posing by a plane.

Here is a picture of Jax and Maryam walking around the hanger. Jax kept pointing and saying, "Another one! Look Mommy! Another one! Look Daddy, another one! Maryam, Maryam, Maryam, another one! Popop another one!" You get the idea.

The above picture captures his awe. He had his arms spread as wide as can be and would say, "Look at all these air planes!" It was great!

Here the kids are standing next to a propeller.

Above they're looking at model planes. The entire collection is from one man. He built them and donated the display to the museum. Sorry I didn't get his name.

Here is Maryam pretending to perform for the USO. :)

Here is Maryam and Jax posing by a plane.

Here everyone is outside watching airplanes take off from the Palm Springs airport. Jax got a kick out of it! He'd say, "Here comes another one....VROOOOOOOOM!"

A helicopter. Another of Jax's favorite things.

The family by a plane.

Daddy and Jax by a plane.

Daddy and Jax in a cockpit.

Maryam in a fire truck.

Jax and Maryam next to a statue of a pilot. I personally think it looks like the pilot is doing a bad Heisman pose. Popop says its a pilot explaining an air maneuver. I think he's right, but my guess wasn't bad. :)

More Soccer

2011-10-24T18:48:00.000-07:00

Practicing before a game.

Playing goalie. She LOVES playing goalie! She's actually pretty decent at it too! She's not afraid of the ball or getting kicked, she just gets down and picks it up or clears the ball by kicking it. I'm so proud!!!

Here's Maryam doing a kick off.

Posing for the camera after a game.

Playing goalie again.

Jax and Daddy.

Throwing the ball in.

Maryam is playing soccer!!!

2011-10-24T18:39:00.000-07:00

Here is Maryam at the only practice I've been to since she started playing. Unfortunately her practice is at 5 and I don't get off until 6. It sucks for me, but they have to practice while its still sunny out.

Maryam's first game. Here she is with Momom before the game.

Huddling up before playing.

Standing around getting ready to kick off.

Running after the ball.

Maryam and Yaya after the game.

Jax and Maryam after the game. Jax has her snacks.

So because she is in the 4 and 5 year old league they don't keep any statistics. We're not supposed to know how many goals are scored, how many assists there are, how many blocked goals there are, none of it. Of course, that doesn't stop the dads on the sideline. After Maryam's last game, Brett turned to me and said, Maryam had 4 saves! I looked at him shocked! Then he said, we've won every game so far. Ha! Dads...

September trip to Disneyland

2011-10-10T18:50:00.000-07:00

Here is Jax and I with Mater and Lightning McQeen.

Here is Maryam and I with Minnie Mouse at Disneyland.

My little family in front of Its a Small World.

My crazy babies.

Puddle Jumping

2011-10-10T18:44:00.000-07:00

My kids LOVE when it rains. They love to dance in the rain and run in the rain. I think their favorite part of the rain though, is the puddles the rain makes. They can spend hours jumping in puddles! They haven't learned the whole, "there is a time and a place" thing. This particular day they had just gotten dressed and were getting ready to go over to Yaya's to visit Auntie Karen and Auntie Kathy. Instead, they played in the puddles, took a bath, took a nap and then went to Yaya's. But hey, they had fun!!!!

Super Jax!!!

2011-10-10T18:39:00.000-07:00

There isn't anything else to add to Super Jax!