Whitney Kaholumehekainani

Feeding Tube Awareness Week 2012

2012-02-10T19:49:00.002-07:00

Feb. 5th through the 11th is the Second annual feeding tube awareness week! I didn't participate in the first one, even though Whitney had an NG tube, I just didn't know about it! So this week I have been posting my answers to the daily topic on my facebook page and I will later on Whitney's feeding blog. It's a great idea to help every one spread awareness about feeding tubes. I am very grateful for feeding tubes and that Whitney has one, it has saved her life.

Here is a video they made and we are in it three times!

SUPER-STAR

2012-02-07T15:04:00.000-07:00

After the GI appointment, we had about 2 hours till our next appointment with the Pediatric Surgeon. We sure didn't want to spend a half hour driving home then a half hour driving back then another half driving home again. So we packed up and drove to a mall while Whitney fell asleep in her car seat. My mom went in to Macy's to find little girl dresses for my sister's upcoming wedding. I stayed in the car and tube feed Whitney. Afterwards, I drove to Subway for lunch. I used my giftcard to buy a $5 foot long! :) My mom and I split it and ate quietly in the car while Whit was napping.

We got back to the hospital and got up to the office right on time for our appt. but they said it would be a little bit. So I ask, like 20 mins? And the receptionist said yeah. That waiting room was really crowded so once again, we wait in the hall way. Whit had lots of fun getting drinks of water, running around, and waving hi to everyone coming and going from the elevator.

After me asking a couple times :) they finally got us back after over an hour of waiting! (which really put us behind on Whitney's feeding schedule). Surprisingly after crying again, Whitney didn't vomit this time either.

I though they were going to replace her mic-key button but they didn't. (the dr. was in a hurry I think). I asked about the mini button and she said that they would order one for us! The only difference is that it has a much smaller profile on the outside. Cool.

Dr. G. (surgeon) approves an Endoscopey for Whitney and wants to be there to see her stomach and other things too and to make sure everything goes well. She can also replace the g-tube at that time.

They also showed us the results of the upper-GI and small bowel follow through. Theres no obstuction in her bowels. But she noticed, and was surprised the the radiologist didn't notice, that Whitney's stomach is really long! In the X-ray it practically goes down to her hips! She's apparently never noticed this before. I was really surprised to learn that Whitney has a big stomach, mostly cuz she can't handle a large volume of food. But the Doc. said that maybe food is pooling and the bottom of her stomach and can't get into the small intestine because of the weird shape! I know it's confusing with out the picture but hopefully that makes sense!

While Dr. G. was examing Whitney's g-tube, CDH repair scar, and ECMO scar, she was telling the nurses that Whitney survived all of that and that Whitney her Super-Star! I call Whitney my miracle! Either way she is amazing and has beaten the odds!

MALNOURISHED

2012-02-07T14:33:00.001-07:00

Whitney's visit with the new Gastroenterologist, DR. U. We all drove down to PCH for the day for 2 different appointments. I was so excited to get a call for us to come in sooner for the GI appt. because they had us scheduled for like 2 months away, so far that I didn't even write it down because I asked them to call if they had a cancelation. They called for Fri. but we were at the eye dr. Then they called for monday. So I canceled our OT and we to the GI instead.

Normally we see Dr. M. and I was really not liking him. He hardly did anything to help us! Anyway. so as usual Whitney starts crying the minute my mom put on the ID band on her leg. They called us back and this time we were prepared for vomit! We brough towels and cups and extra clothes...and guess what...she held it down! Even with all the crying and screaming (she was not in pain at all) she didn't throw up. She weighed 18lbs 13 oz on a different scale and is 32 in. tall.

Signing HAT

The Dr. was really nice and listen to me and understood me. She explained everything really well too. She said that according to Whitney's height and weight she is technically "malnourished". She didn't say it as if it were life-threatening. Every GI dr. (4 different ones now) say that. I don't think they mean that she only eating rice and beans malnourished, she's just below the curve of the height to weight ratio. Whitney is getting a really well balanced diet of whole grains, milk, fruits and veggies. And plenty of water and vitamins. It's just not enough calories for her. Although she is growing at a steady rate, she still "needs" more. BUT when I feed her more calories or volume, she vomits! She just can't handle it. I completely agree though that somehow she needs more food. Whitney is so skinny that her ribs poke out, and she has like no body fat.

So she recommends trying Erythromycin. It helps with slow motility (how fast the stomach empties). She thinks that a combo of the GERD and Slow Motility makes her vomit. Even though Whitney was 2 to 4 big soft stools a day, she still was to trial that drug.

When Dr. U tried to exam Whitney and listen to her, then she started crying again. The doc said that Whitney has a really bad aversion and anxiety towards dr.'s and in new situations. Uh yeah she does! Unfortunately I can't communicate that sometimes they won't hurt her. I can't lie to her either saying that they won't cuz some appt. do hurt. I hope Whit just know that we are always there for her and are doing whats best for her.

Dr. U. also recommends an Endoscopey. Whitney had one done back in June and they want another for many reasons. The think that the sphincter between the stomach and small intestines might be the problem now. If so there are a few options that can help it. Before it was the sphincter between the esphogus which is why she is one the BETHANECHOL (which they did increase that dosage and I think that helped her to vomit less over the past week). So we will do that procedure in early March. Last time she did really well and she came home a couple hours after she woke up.

She also recommends doing a Swallow Study Clinic where all her Dr.'s including GI, Surgeon, Pulmonary, and Cardio and OT and ST come in and evalute her all at once. I'm so glad someone finally suggested this! I've always wanted all her Doc's on the same page. This study also will help them determine if Whitney is ready for intensive feeding clinic. So the Dr.'s will see if she medically able to and the Therapist will determine if her skills are ready for it. I'm not sure how the one at PCH is run though. I'm sure she won't get in for a while now but it's nice to know that people are helping us with her eating skills.

Whitney is just starting to taste new foods. So I want her to go at her own pace. It's a very slow process, but in my dreams...I want her weaned before we go to Dental School! Haha! Like I said, took us a year to get her medical conditions managed and to be able to lick and nibble small foods. But the other day she did eat 10 bites of chicken gravy and 15 bites of tomato soup with stars! Obviously it's not many calories but it's still a huge success.

FAR-SIDED

2012-02-07T13:45:00.000-07:00

Whitney's yearly visit to the AZ Pediatric Eye Specialist, DR. G. His office is much closer to us than Phoenix Childrens Hosptial. My mom came with us to help with Whitney so that I can take notes. When we got there I filled out some paper work while Whitney and her Gramma hung out in the hallway because the waiting room was really crowded!

The minute we were called back and walked into the exam room Whitney starts screaming and crying. She is so anxious and scared that it makes me so sad. Then she throws up all over the equipment and chair and floor and Gramma.

The nurse then put drops in her eyes to dilalate them. Then we wait out in the hallway again for about 30 minutes. Whitney was okay just running around the halls!

Laying on the floor

Sitting on the chair

Taking pictures of herself

Pictures with Gramma

Then they called back in to have the Dr. look at her eyes. At first she did okay. He had her follow a light with both eyes, then individually. The he turned the lights off and she started crying again. It was hard for Dr. G to look into her squinted, teary eyes, but eventually he was finished.

He told me that she fixates really well. Whitney is still moderately far-sided. So a little bit more so than the norm. But he says she can see really well either way. We just have to watch out for eye-crossing. If she starts to cross her eyes then she'll need glasses. He told us this last year as well and so far Whitney does not cross her eyes!

HERE is the link about Whitney's last eye dr. appt., it's towards the end of the post

What happens when the toddler starts to climb

2012-01-30T22:36:00.001-07:00

They all fall down!

Whitney K. is 18 months old and weighs 19 lbs 5 oz. She is 100% G-tube depentant but! She is definitely improving with food because she is actually putting it to her mouth and licking it! She won't eat it but at least she is getting brave enough to taste it! That's awesome that she is becoming interested in food and we are on our way! (FYI it took a year to achive this step...)

Whitney is also learning a lot of new words/signs! She can sign about 20 words which include: More, All Done, Up, Down, Please, Help, Sleep, Eat, Dog, Cat, Duck, Butterfly, Hat, Phone, Shoes, Bye Bye, Hi, Bubbles, Bath, Ball, Book, and Car. Plus she knows her body parts and signs to many different songs like Popcorn Popping, My hands Upon my Head, Head Shoulders Knees and Toes, The Itsy Bitsy Spider, Pat a Cake, and much more! I'm going to start working on "food" signs like milk, water, cheese, cracker, apple, banana, drink, and cup.

Getting ready for a bath!

And back to title... They all fall down and get hurt! Poor girl, no one was watching her while she was in her Great Grandma's room watching tv. Whitney has started climbing up her G.G.'s chair to sit with her and apparently this time she slipped off. Happened on Sunday and I ran in there from the kitchen to see her sitting on the floor screaming. I gently picked her up, making sure she wasn't gushing blood :) or broken :) She wasn't so I carried her to the sink where she threw up and I rinsed her off. She didn't complain about it much that night so I think she's okay! But it does look so sad!

But she is still into climbing!

Eventually she did get up by herself! She can get down by her self too but not very gracefully!!

All done and clean from her bubble bath!

In her bath today though, was the first time she's ever thrown up in it! Whitney loves her baths! She hates drying off (ears, nose, eyes, and gtube) and hates lotion! But loves taking long, warm, bubble baths. She has though, several times, thrown up right after a bath on her changing pad, but this was the first time in the bath tub.

So I was putting conditioner in her hair while the tub was filling up with bubbles. I told her to wash her feet. Then to wash her face. Whitney had a ton of bubbles in her hands and put it all on her face! I started to laugh then she was crying and choking. She put bubbles in her mouth! I washed them out but she was trying to too, with a hand full of bubbles!, so I grabbed her hands and rinsed them off and then I continued to get the bubbles off of her face. She was fine but she spit up a little bit, then spit up a lot! So I drained the tub, and refilled with clean water and put in only a tiny bit of bubbles! She had fun playing the rest of the time thank goodness!

Sometimes I like to do her hair in a pony tail or pig tails, instead of just plain down. Whitney's hair gets in her face and mouth a lot so then I just put it in a simple messy pony tail. Pig tails are hard for me and get messy fast! and the only way to get rid of them to cut the hair tie out and bathe. Plus Whitney complains when I do her hair, even just nice brushing. But, with her sitting on the piano bench playing the piano is the only way I can do her hair! And it still has to be quick! (BTW she can climb on the bench herself too).

She can also climb on the couches! I guess we're at the stage where I can never turn my back! Next thing I know she'll be climbing on top of the table!!

I don't really like the pig tails on her so I found matching hair clips and made them into a bun!

Whitney lost the Ipod touch yesterday and she found it today! Thanks hun but I'm going to hide it now!

The last few days have been really full! We have the usual OT and FT this week but she also has an eye doctor appointment to just follow up/ check up from the one a year and a half ago! Make the most of your last day in January this year!!

Whitney Playing at the Park! 18 months old!

2012-01-29T15:09:00.002-07:00

Cardiologist and more

2012-01-23T15:52:00.000-07:00

"The course of our lives is seldom determined by great, life altering decisions, our direction is often set by the small, day-to-day choices that chart the track on which we run." ~ Gordon B. Hinckley

My husband, Thomas, had his 27th Birthday last week! I made his favorite Strawberry cake, but I burnt the cake, heated up the frozen strawberries way to much and same with the whipped cream topping! Some how it still tasted good! His parents made lasagna for his party and so did mine! haha, that's not his fave but it's still good! I also got ice cream and root beer for floats. For his present this year, I got Thomas a nice lunch box that was on clearance and promised to make him lunches for work! Who knows how long this will last but I'm hoping a while, even though I forgot to do it last night! I love my husband very much!

This past weekend was also Lily's 1st birthday! I took Whitney because my parents had to go outa town last minute to help my sister move back home (whom by the way is engaged to be married!). There were a few people coughing so we didn't stay as long as I wanted too. Whitney cried when we got there because she was so overwhelmed and scared but after a while and being distracted by a balloon she settled down and decided she was in a safe place. Lily looked so so adorable in her birthday outfit! Lily is also a tubie like Whitney! If you remember their tubie photo shoot! from my other blog. Recently, Lily was diagnosed with Mitochondrial Disease. She is a very strong little girl with amazing parents and I pray for them daily.

On Saturday we went to a friend's bridal shower. It was simple and pretty fun! It also helped us get some ideas for my sisters bridal shower! I'm so excited she getting married!

On Sunday, Thomas' parents were able to stay home from church with Whitney for us!

Today, we just got back from Phx Children's Hospital for Whitney cardiology appointment. Same thing of with her crying at the nurse for taking her blood pressure and oxygen saturation levels and her temperature. Her BP was high but that's because she was kicking and screaming. Oxygen was at 96 which is perfect. Then they took us back to do the echocardiogram (ultrasound of Whitney's heart). My mom held her on the bed while I played the her music and danced and sang. After a while she settled down and the tech got some good pictures. Everytime the tech would change postition though Whitney would start crying again. But she did a good job and it didn't take too long. We waited again in a room for Dr. Puntel. Now he is the only Dr. likes! He is able to listen to her heart without making her cry! It was amazing! (she does also like her surgeon mostly too though). Anyway he said a bunch of technical stuff that I wrote down but basically, the pressures are looking stable and the numbers are good. The left pulmonary artery is still small and he wants to balloon it open again in May with another Cardiac Cath. At that time they may also want to close the PDA and also the ASD maybe. He said that she did have a PFO but he thinks that closed on it's own. He wants to do another echo in April too. He doesn't want to increase the dosage on her Sildenfil, even though she's gained weight, to see if that will very slowly wean her off of it.

I'm really glad that this will be a much easier week in terms of appointments! Just got feeding therapy and speech therapy!

Shots, Upper GI and more

2012-01-23T15:18:00.000-07:00

Last week Whitney and I and my mom kept super busy with appointments including Occupational Therapy, Feeding Therapy, Synagis Shot, and an Upper GI and small bowel follow through.

Being her silly self

Watching Elmo's World on Sesame Street

The OT, FT, and ST are going pretty well. I can defintely see some improvement in Whitneys skills. It's just a long drive out there but Whitney needs them and I really like this place.

The synagis shot went horribly. Now normally Whitney does pretty good going to any and every Dr. office, but today, this was different. So my mom came and was carrying Whitney and as soon as they stepped into the building/waiting area, Whitney started crying. A really sad, scared, pitiful cry. Made me want to leave right then. But I know she needs this shot so we continued on. The crying got way worse when we walked in to the room. The nurse was talking so softly that I couldn't even hear her. Whitney then threw up. Yeah she was so scared and screaming so much that she threw up. The nurse asked if she was sick and I just said no she just really scared and anxious. Then she wondered if she'd be okay with getting a blood pressure, that if she just cries it wouldn't work. I said that well she going to cry, but she wanted to try anyway. Whitney freaked out more when the nurse came towards her with the blood pressure cuff. Yeah. Then I held Whitney and she was just shaking so much and only calmed for a minute when I sang a little. Again, second guessing if this was worth it. Finally I brought her over to the bed and she held on to my fingers so I couldn't just leave her. My mom stood there as well to help hold her legs and bam...shot. While looking at Whitney and holding her hands, I finally broke down. My tears gushed no matter how hard I tried to hold them back. Afterwards I immediately picked her up and quickly walked out the door and down the hallway. I think at one point Whitney wondered why I was crying. Then we went back in and the nurse said she could go out in the waiting room and watch the TV. Of course Whitney is still crying and shaking. We finally got outside and let Whitney walk around. My mom said that next time I can leave the room, normally I'm not standing right by Whitney, just this time I felt so so bad and she wouldn't let my fingers go. We drove home and Whitney was pretty fussy the whole time. But my mom feed her and she kept it down! Went right to sleep in her crib when we got home. And me straight to the blog to share my traumatic experience with everyone.

The Upper GI and small bowel follow through was done at Phx Children's Hospital. After I registered, a nurse came over to put the ID band on Whitney's leg and thats when she started screaming. I feel kinda bad for all these nice nurses who get cried at, but of course I feel more bad for my baby. Then they took us back to the X-ray room to get started. With Whitney crying the whole time, they explained to me the procedure. We took her clothes off and laid her on the table. The Dr. first used a water-soluable mixture in her g-tube but it was kinda hard to see. The took a bunch of x-rays. It doesn't hurt Whit, she just really scared of the big machine and being held down. She acutally vomited so they gave Whitney a break and after a while she fell asleep. Wimpering and crying the whole time. When we put back on the table to use the barium in her tube and she woke up and cried some more. Then we waited out in the hallway for about an hour. We went back in for one more x-ray of her small intestines and were finished after that.

I don't have the written results but from what the Dr. saw he said that there were no obstructions. They observed mild delayed gastric emptying. Her intestines are not malrotated. Her liver is up a little higher than her previous x-ray but it still looks good and the patch (replacing her right diaphragm) is holding it down pretty well.

Waiting at PCH for the last x-ray

Gramma with Whitney wanting to leave!

18 months old! and weighs 19lbs 5oz

Being silly! Good view of her top molars coming in!

Good view of her bottome molars coming in

Which one to play with? They usually aren't all nicely put away!

Going down the stairs while holding her shirt up!?

SUPERCROSS!!

2012-01-16T22:38:00.000-07:00

Not much to say bout Supercross cept it was AWWWWWESOMMME!!

Alicia & Thomas at Supercross in PHX Jan 2012

Lots of fireworks when announcing all the racers

Lots of green lasers and lights (promoting Monster energy drink) one of the racers in the crowd

Lots of fire too!

The race was live on SPEED

I love the take off!

And watching all of them squeeze through the first turn.

Happy Birthday Clayton!!

This was Thomas' first time ever to supercross and he loved it!

My dad also loves supercross and has taken me every year since I was in high school!

It was a pretty intense race this year!

I liked this view from the balcony but sitting down closer is way cooler!

This is the mound of dirt that James Stewart crashed on! He was doing so so well passing every one up on the final race only to biff at the end! I was so mad/sad!

There were a lot of crashes this year but everyone was okay!

The whole track! The stadium was full!

Welp, hopefully I'll be able to go again next year!

Disneyland Vacation

2012-01-15T23:34:00.000-07:00

DISNEYLAND!! was totally awesome! Thomas and I had so much fun being there together! Obviously we couldn't help but observe lots of families there. Some with tiny babies and toddlers and others with teenagers. We pretty much decided it would be best to go back when Whitney is 6 and the next little one is 3 (and me not expecting yet). And then maybe again when Whitney is 9 the next is 6 and the youngest is 3 (again and me not expecting yet). :) But only in a perfect world though right!? Because it's way way expensive! We stayed in a cheap hotel 10 mins from the tram to the park and didn't buy much food or souvenirs and only went for 2 days! We also decided it would be more fun if we stayed for 4-5 days! haha. Oh man did my feet get tired, in fact by the end of the 15 hour day, the pain made it to my back! Crazy. But don't worry, I was fine the next morning. Oh yeah you heard me 15 whole hours at Disneyland on our second day there. From 8AM to 11PM. The first day we spent driving to Disneyland from Las Vegas and got there around 12pm then got to California Adventure around 1pm and left at 10pm (when that park closed).

Our hotel, the Travel Lodge, wasn't terrible actually just kinda cheap which is okay for us now. The elevator wasn't working so we hauled our luggage up 3 flights of stairs (well mostly Thomas did haha). Our key card didn't work at first and it took a while to figure it out. It was also pretty darn warm when we got there! It's a 10 min. walk up hill both ways...jk...it's up halfway and down the other half and oppsite on our way home obviously. We had to cross the street to walk on the side walk then cross it again to get back to parking garage to find the tram. The tram dropped us off right at the begining of DownTown Disney.

It's been 6 years since my last trip and it's been 9 years since Thomas has last been.

The first day we decided to just spend at California Adventure. I love the Soarin' Over California ride! We actually saw a family we know there! Cool! It seemed liked we walked around a lot trying to figure out what line would be best to wait in. Of course we got a couple of fast passes which are awesome but you always get that "cheating" feeling.

This was Thomas's first time on Tower of Terror which he loved. Screamin' California was way fun too. Aladdin is the best show ever!! I could watch it all day long. Anyways like I said we mostly walked around because we had no idea where to start!

Thomas bought me a light-up rose! When I was a kid though we never bought anything like that. Which I'm glad my parents stood strong against our begging, we did get a certain dollar amount for souvenirs, what ever it might have been. They didn't buy us food either, we packed our little fannie packs full of snacks for the day. I'm not sure what Thomas did because he went with his friends' family that one time.

We saw some Tron thing, saw the World of Colors show. Found some yummy cream cheese filled pretzels for a late dinner then went home.

Normally my family goes for like 5 or 6 days so we can go on all the rides as many times as we want. But this trip was very short so we only got a few good ones which was still fun.

We finally made it to Disneyland! Getting there in the morning was awesome because there were no lines! We were a little confused on what would be the best, but eventually we decided to just go for it and get on the rides instead of walking around all day! haha.

First was Pirates of the Caribbean, then my fave of all time Indiana Jones!! Then I think we headed over to Space Mountain and when the sign says it's a 20 min wait, they really mean 30-40 mins, at least that seemed to be the trend. Tomorrowland was the most popular throughout the day. We also went on the Finding Nemo Submarine ride which was both of our first times. It was kinda stuffy in that sub. Thomas got a big burger for lunch and I got some yummy pasta!

Everything got really busy and we finally figured out how to use the fast passes, kinda. The longest line was probably Star Tours. I don't know why cause that ride has always and still did! give me a headache and stomachache at the same time.

We didn't even bother with the Matterhorn because it doesn't have fast passes and the line always wraps around the whole mountain. We also went on Haunted Mansion, Big Thunder Mountain Railroad, and Splash Mountain. I got so wet on splash mountain that I never did dry completely even though it was about 5pm when we went on it.

I'm surprised how much stuff we got to do in one day!

We found dole pineapple whip yogurt in adventureland! We waited in that line twice because we love it so much! haha. The second time it took 20 mins and was pretty much that long or longer all day! Crazy. We also bought some cotton candy because when you see every other family with it you just gotta have it!

We also got a pretty good spot for the pararde, which was Christmas themed. It was pretty good except they just kept playing the same song over and over again. After that we went on the teacups! Love it! That was the one and only "little kid" ride we went on. (Video at the end)

We got another cream cheese filled pretzel to eat. My thinking about buying sovenirs was that if I wouldn't use it at home, then I didn't need it. So no expensive shirts or mickey mouse ears for us!

We made it up to toone town for maybe 5 mins before turning around. The line to It's a small world was ridiculously long. We hung out around Main Street USA then made our way up to see the fireworks. We walked around the huge crowd of people while watching the fire works and made it to Fantasmic just in time to get a decent spot. Looking through peoples heads for 30 mins while standing is really tiring.

By the way, Peter Pan and Woody were pretty much my fave childhood movies, I know they aren't princessey, but whatever. I love the whole concept of Peter Pan and never growing up, heck if I were Wendy, I'd have stayed in Neverland! haha, but she's stronger than me. As for Toy Story, well, I pretty much always imagined my toys were alive. In fact I knew they were playing as soon as I left the room and could here me coming back in so they quickly stood still! haha, at least it was fun to imagine that anyway!

We then went on one last ride...Jungle Boat Cruise!! It was only about 10 min. wait. Our boat guide was so so funny! We were laughing the whole time! I told Thomas that it was my dad's favorite ride and afterwards he's like, I can definitely see why it's your dad's favorite! haha. It really is just his kinda humor! It was a great ride to end our day with!

We ended up sitting on a bench near the exit gate because we were so warn out! lol. We eventually made it to the tram to walk back to the hotel and crashed! Of course I did text my mom and she told me all about how Whitney was.

Whitney did great by the way! Except her not sleeping through the night at all for my poor mom. And all the barfing but other than that they had lots of fun. We are glad we didn't take her on this trip. Probably wouldn't be able to do anything we did if we had her, plus she would have been way bored!

I'm so glad we were able to go on this trip!! Thomas and I had an amazing time! We held hands the whole time which I loved! And we pretty much never disagreed on anything! It was so worth it!

Las Vegas Vacation

2012-01-15T21:20:00.000-07:00

Thomas and I have the opportunity to go on a little vacation getaway to Las Vegas and Disneyland. It was amazing and we had a ton of fun! Thomas got the week off work a long time ago as we where planning to vaca in Hawaii with Whitney, but some things came up and we were unable to go/afford it. :) So my Aunt Renee lives in Las Vegas and was going out of town that week. She gladly let us stay at her house while she was gone! At first I really wanted to bring Whitney and found a bunch of fun things to do there for a few days. Obviously going to the strip wouldn't have been one of them. Then I thought more about it, the vomiting every where, tube feedings, strict schedules and nap times, and I wouldn't be very relaxing. My mom said that she could take care of Whitney so thats what we decided to do. It was really easy to pack for just us. I made up a long schedule for my mom to follow for Whitneys feedings, lots of phone numbers, blended food formula receipe, and much more.

We left on a Tuesday afternoon, a 4.5 hour drive across the Hoover Dam. It was a very easy drive which we spilt between the two of us. Got to Aunt R.'s house before dark and went over a few things, unpacked, she left, then Thomas and I went to the strip!

We parked at the Bellagio because that is were my Aunt does her massages. :) The inside was nice but they were redoing the conservatory so we weren't able to see that. The fountains, though, were amazing! We saw them like four times total!

This is a combo of two different videos so don't feel obligated to watch the whole thing cause it's quit long, but you get the drift of it. I just don't know how to shorten it yet. But it sure was way cool!

We walked around the crazy strip bombared with performers and people passing out cards of... well it's such a dirty word I don't even want to write it. It was very noisy and bright and smokey and busy. There were actually a lot of young families there. I remembering going once or twice as a kid and thought it was kinda fun but scary. I really don't think I will ever bring my young kids to the strip after this. We spent about 4 hours there and I got a headache! We went to the Miracle Mile Mall near Planet Hollywood and found a cool place to eat. The name isn't all that great and actually very unappealing to me, it was called Cheeseburger Las Vegas. But they had great food and a large variety. We love Hawaiian food and Thomas got this Kalua Pork Nacho and I just got some tasty chicken tenders and sweet potato fries. This was one of the "cheaper" resturants in Las Vegas and cost us over 30$.

We walked around a little more and I bought a shirt and one for Whitney that said "What happens at Grandma's stays at Grandma's" and on the bottom it says Late Nights, Junk Food, Games, Las Vegas.

On our way home we stopped at Albertsons to buy some cereal and milk and Ibuprofen.

This is a really cool, big and shiny horse in the Bellagio entrance, which was not there the day before. The ceiling is really cool but I have no idea what it is!

We wanted to visit the Luxor because it looked really cool on the outside. The inside was pretty cool too. Also, when we were looking at a dining cuisine in L.V. most of the restaurants had three or four dollar signs next to it but Rice and Co. had only two dollar signs which I think meant the dishes were over 30 $ . We like Asian so we went in there. They didn't have a bathroom so we had to walk across the way and when we got there the women's was closed! So we had to go all the way back down stairs. We we finally got back up we finally got seated and they gave us a wine and beer menu... uh no thanks, then gave us a sushi menu, then finally gave us the real menu which was only two small pages. The place was really nice looking but they played pop music... in an Asian restaurant, didn't really fit but oh well. First we got Pan Fried Pot Stickers which were actually really yummy. I asked the server how the salmon is and he said that it is very beautiful. So I got it although it was the most expensive salmon I've had. It was NOT good!! It was MUSHY and the vegetables were pathetic! Applebees has better salmon. We weren't even full so we order some soup, which I really didn't care for and almost gave me a stomach ache, although Thomas did enjoy it. The service was very poor, I drink a lot of water with my meals and sometimes it was empty. Also they only refilled our sodas ONCE! So we learned our lesson, just because it's "fancy" doesn't mean it taste good or even has good service! Total cost was about 70$$

We went across the street to the MGM grand but the Lions were not out, it was too late in the night to see them. So we just went to the gift shop and took pic with the stuffed animals that we didn't buy. We did buy Whitney a beautiful book though and a picture frame magnet.

We loved staying at Renee's nice house!

Totally Awesome

2012-01-10T12:48:00.000-07:00

Totally Awesome was our vacation! I just didn't want to leave ya'll hanging. I'm working on a post all about it! It was so so fun! The bags are stilled not unpacked and the laundry is not yet done and the place is kinda stinky but I'm working on all that! In the mean time I have updated Whitney's feeding blog .

During our trip we listened to Dave Ramsey's Total Money Makeover. It was a pretty good Audio book except when it feels like he's yelling at you. Haha. It definitely inspired me and my husband to make a monthly budget, because our yearly ones never ever worked. Also to start saving money and a bunch of other tips. His motto is "live like no else; later live like no one else" So if we save our money, pay our debts and live like poor people, then maybe one day we have money and still know how to manage it.

Having a child that will requires lots of medical interventions, we need to be better prepared for that. And hopefully be able to pay all those med bills. We only have one ins. co and no extra help. We don't have any car or house or student loans or credit card debt thank goodness. Just expecting to pay THOUSANDS of dollars in med bills. Including: three different therapist, three different medications, four different specialty doctors. And that's just Whitney. Who knows what could happen to us.

I'm not going to compare our situation with anyone else. I realize lots of you have it WAY worse and some others are lucky with healthy kids. Plus we might go to Dental school and I might have another baby some time (obviously). Anyways, those are just a bunch of things that have been on my mind recently. Like I said, this is just us and I'm not comparing to anyone.

THESE pants ARE way TO big!

Happy First Day of the New Year

2012-01-01T22:14:00.000-07:00

I was pretty much a bum last night so I fell asleep right after I tube feed Whitney 6oz of my "blended food formula" around 11:00pm. The hubby was pretty disappointed, I'd be too. But for some reason I preferred being with Whitney, to make sure she was safe and didn't wake up from all the fireworks. I would have also preferred to be in Hawaii with her Grandpa Montgomery, but he was unable to fly us out to see him and the whole Hawaiian side of Thomas' family. Maybe next year.
Whitney threw up this morning. Thomas feed her in 20 mins. instead of 30 mins. plus he let her climb up the stairs which is when she vomitted. :( He wouldn't feed her again for some reason, so I had to get up and tube feed Whitney a couple more ounces. I checked her stomach first and it was empty so I couldn't let her starve for fours hours.
Church started at 11:00 am (which I had no idea) instead of 9 am. But I wasn't going anyway because it was my day to stay home with Whitney (which I also prefer). We'll take her to church after General Conference in April. Right now church is right during her nap time. She slept from 11:30 to 2pm, so it will be very easy for family members to stay home with her. Suppose if we really wanted to, the person staying home could go to the 9 am sacrament meeting.
Whitney did great with her 11 am meal in the high chair (she's into the magna doodle these days and her singing books) and fell right asleep in her crib afterwards. I did a bunch of research online about tube weaning programs and such. One in patient intensive tube wean program says kids have to be at least 2 years old. Doing it from home sounds like a ton of work and takes a long time and most parents fail a few times and I don't think I know enough to be able to do it my self. But I will definitely be looking more into it because that is obviously one of my new year goals.
I gave her a bath right after her nap and right before her meal. Whitney then threw up part of her 3pm meal of 5oz for 30 mins, she was simply sitting in her high chair and no one saw it coming. yay. BUT yesterday was vomit free...who knows why!?! I didn't get my hopes up about it and this is why...she threw up twice today. I also go a nap in today. Played Rummy cube with my mom and grandma. Anyway that was pretty much my day. I have to feed Whitney at 11pm and that will end my day.
I'm looking forward to many fun things this month. This week, Thomas and I are going on a little getaway vacation. Thanks to my mom being able to take care of Whitney for us. I wanted to take her at first, then realized it wouldn't be much fun mopping up barf twice a day and messing with tube feedings and trying to keep her safe and protected. So Thomas and I are going alone to spend a couple days in Las Vegas and a couple of days at Disneyland. So fun! Also this month we are going to Super Cross! I'm going to a feeding disturbances conference. And my hubby turns 27! And we are hoping for a phone call from either Denver or Midwestern about accepting us to Dental School. If we don't, then Thomas has one more chance with an interview at Loma Linda.

Here are a few pictures of Whitney on the last day of 2011. This is one of her favorite new Christmas presents! Daddy set it up for her in the morning while I was out to breakfast with my two friends. He said she played in it all morning! The ball pit didn't come with very many balls and when I went to Target that night I couldn't find any so I just got a bunch of cheap wiffle balls for now :) She still loves playing in her ball pit though!
And the last picture if of Whitney playing Call of Duty: Black Ops, Thomas said she planted a claymore. Whatever the heck that is... :)

Whitney Photography

2011-12-30T22:03:00.000-07:00

Our Christmas 2011

2011-12-29T13:25:00.001-07:00

MERRY CHRISTMAS

It's amazing how much babies grow in a short time! I just had to post a couple of last years photos of Whitney to compare with her this year!

Whitney's first Christmas Eve! So festive in her Santa Rocks outfit! About 5 months old and couldn't even sit up yet! Glad she got a few keepsakes!

My second Christmas Eve! Hanging out at church for a family party! A walking, babbling toddler! G tube poking outa the dress and always being followed by a cup for vomit!

Whitney's first Christmas! On oxygen and NG tube! But still excited to open presents!

My second Christmas! So excited to come down the stairs! (a skill she recently discovered too!)

So the festivities started Christmas Eve day with lots of baking and cooking and fun! That night we went to a Patterson family party. It was okay, mostly just watched Whitney run around the church building. We left early around 8:30 pm and Whitney fell asleep in the car. I was driving home with my Grandma in the front seat and Thomas in the back by Whit. We were close to my old neighborhood and I remembered that this one house always had amazing Christmas lights. It's just SW of Olive and 51st Ave and you can see the lights from the street! There were lots of cars and people around looking at the lights. It was better than I remembered! We went to a couple more neighborhoods bedfore going home. So Whitney didn't get to open her new pajamas that night with the rest of us. After a few presents I watched part of a Christmas story on tv. I fell asleep on the couch downstairs and woke around 2 am to Whitney's crying over the monitor. (she was ok) I got up and saw my mom arranging the presents under the tree :)

I love this pic of everyone! Wishing Derek and Mindy and the kids were here though!

Christmas Eve! Me and my sisters! That blanket is amazing! I think it's sheep from Bed Bath & Beyond.

On Christmas Day we woke up just in time to be a few minutes late for church ;) We brought Whitney with us because it was only an hour long meeting with musical numbers and sacrament of course. She really didn't sit still for long and eventually bumped her head on the pew trying to escape. So I took her out to the hall and pretty much stayed there the whole time. I didn't attempt to go back in with her (sitting on the front row!) because I end up taking her back out the next minute anyway. So she walked around the hall way a few times before meeting another little girl (about 2 1/2 yrs.). For some reason, Whitney really wanted to hold her hand... so they held hands walking the halls for a while! Cutest thing ever! Then I washed Whit's hands really really well and church was over.

When we got home Whitney took a long nap while everyone was very anxious to open Christmas presents. They got to their stockings and opened a few presents before Whit woke up.

I got Whitney's new Christmas jammies on and she made her appearance! I'm so glad the she just learned how to go down the stairs! My mom and I have been trying to get her to go down backwards for months. But then my husband had her go down forwards! So she just scoots like you can see in the pictures! It's cute but not as safe so we still have to be right beside her.

Whitney got so many presents! She (and her parents) loved it! Of course they were mostly from 3 sets of grandparents and great grandparents and her parents! Oh yeah! She's spoiled!

This duck was a huge hit! She loves to feed it the bottle and it quacks. Whitney did the sign for duck and says "bwack bwack" when she saw it.

This toy is a really good skill for littles one to master! I'll have to work with her on it a lot though!

Signing "more" to the singing elephant!

After we opened all our presents, we fed Whitney, she threw up, changed her to new Christmas pajamas, and headed over to Thomas' parent's house! They also waited for us to open presents. His mom made a delicious ham dinner. We opened more awesome gifts and hung out and played Catch Phrase. I was glad everyone was there! It was getting late and Whit was due to eat again so we all departed. Anyways, hope you enjoyed reading about our 2011 Christmas.

Whitney & Uncle Ikaika

Whitney & Auntie Kehau

Whitney & Daddy

Whitney & Daddy ready for church

Christmas Card 2011... for the Blog!

2011-12-23T18:53:00.000-07:00

Christmas Card 2011... for the Blog!

This was an amazing year, full of up and downs but mostly fun! Thomas and I have been married for almost five years now! This year was also full of “firsts” for us as a family of three. Thomas and I love this first time parenting deal and are getting use to toting around our baby girl. Of course for the most part of the beginning of this year and the past few months we have kept our daughter safe at home. We were able to go on a couple of trips this year, mostly thanks to my parents. First, we went to the beach with my family. I’m so glad Whitney loved it because going to Oceanside, CA is truly one of my favorite vacations. Second, Whitney and I went with my parents to Utah and Idaho for a family reunion and Independence Day. Thomas had to stay home and work for that trip, but we still had fun seeing all my extended family. We are living at my parents’ home who made it possible for Thomas and me to go out on lots of dates together! We are so grateful and excited to raise a family in the gospel!

Thomas is still working at The Hartford Insurance Company handling claims. He works so hard at his job and does lots of needed overtime. Thomas has also been busy applying for Dental School! With his perfect GPA and amazing DAT score, but we have not been accepted yet. He got interviews at CO, AZ, and CA so those are our only options. We are really hoping we get in for next year! Thomas is a ward missionary in our ward and loves going out with the missionaries and teaching the class. Thomas is an amazing Daddy and does so much in helping care for Whitney. She always says “Dada” with a huge smile when Thomas comes home!

I love being a stay at home mother, but am still get use to not working as a dental assistant. Caring for Whitney certainly takes up all of my time during the day! Between tube feedings, doctors/therapy appointments, and cleaning, I hardly have time for myself. I love blogging and talking to friends and hanging out with family. I was able to take a class at Glendale Community College this past fall semester. It was good to learn about food and nutrition, also good to get out of the house! For my church calling, I make the weekly programs! It’s pretty easy to do, just have to fold 100 pieces of paper every week but I get to listen to the lesson in Relief Society!

Whitney K. has had a very busy year and of course I could write pages on her accomplishments, but I will simply summarize them. She was 6 months old in January and is now 17 months old! She has grown so much and has quite the personality! She loves playing with my parents little dog, loves bath time, reading books, and playing outside. Lately, Whitney enjoys watching Sesame Street and The Price is Right in the mornings. Whitney had three surgeries this year; the first one was in May. She had a Cardiac Cath done to help with pulmonary hypertension and it got her weaned off oxygen and onto a medicine. The second one was in June, called an endoscopy, or Upper GI, to determine why she wasn’t gaining weight and always vomiting and the results were inconclusive. The third surgery was in August when she got her Gastrostomy tube. This feeding tube permanently replaced her Nasal Gastrostomy tube. Thank goodness we are not planning any surgeries or hospital stays next year! Whitney has been so tough with all of this plus the numerous follow ups and checkups and therapies! She graduated from physical therapy and continues feeding and speech therapy and will soon get occupational therapy. We had such a good time this year celebrating all of Whitney’s first holidays too! This year we celebrated Whitney’s first Birthday with a big Luau! I love how Whitney has so many friends!

We are counting our blessing and looking forward to another amazing year! We wish you all a very Merry Christmas and Happy New Year! Pray always!

Love,

The Montgomery’s

Thomas, Alicia & Whitney Kaholumehekainani

Mesa Temple Lights

2011-12-13T00:27:00.000-07:00

Yep, we got to take Whitney to the Mesa Temple Lights Which I can tell will definitely be a family tradition! We got to hear George Dyer sing so it was kind of busy but we didn't stay long in the visitor's center. Walked around and Whitney loved the Christmas lights!! It was really cold so we got hot chocolate on our way home! These first pics aren't mine (obviously) but I just wanted to post them so you can see how beautiful it really is!!

Good day to you all

2011-12-13T00:11:00.000-07:00

Today was a nice day.

This time last year Whitney was admitted to the Phoenix childrens Hospital for an NG feeding tube. She was about 4 1/2 months old. As you all know, when she was born, Whitney was intubated immediately because she could not breath with her little lungs. She only started to learn how to eat when she was about a month or so old. Took about another month for Whitney to feel all better and eat well enough on her own to come home. But at home she screamed every time we tried to feed her. It was stressful for everyone. Eventually we learned she'd only take a bottle while asleep. She was doing a little feeding therapy and physical therapy but when she wasn't gaining weight, feeding tube was the last option. Whitney had and still has GERD (severe reflux), aspirates thin liquids, failure to thrive, and oral aversions. Whitney can not eat well enough to gain weight and grow properly, so it is up to me to tube feed her. I can't decide if this is my trial or hers... but I pray this challenge (and all the vomiting) will soon pass. I am so so grateful though that this is the only side effect from her CDH (along with her pulmonary hypertension).

This morning Whitney and I finally got to hang out on this cold rainy day in our comfy PJ's. We watched a little of Seseme Street, a little Price is Right, read books, sang songs, and we ate breakfast with no vomit. It felt like a Saturday (except that these shows are not on on saturdays) to me because I didn't have to go to school! Yay school is out and I aced my class. Thank you very much to my mom for taking care of Whitney every other morning for me! Here is a really cute video of Whitney playing with Xanthia!

Also today, we all went to Fry's Grocery store. I got ingredients to make a dessert for Thomas's parents dinner. I saw this awesome idea online and thought it was easy enough for me to make. I made some brownies in a mini muffin tray and baked them for about 12 mins. While I hulled and cleaned and dried the strawberries. And together with the icing, I made Santa Hat Brownies! Of course I found this reciepe on another blog who also found it on another blog.... Unfortunately, mine did not look so great. I blame the icing! I'm sad it looks so sloppy but they did tast great!

This is how you turn a cute summery outfit into a nice winter outfit...just add warm pants and a jacket! Okay so obviously not fit for snow but just keeps us warmer in the warm house.

Oh how I love my princess!

Grateful

2011-12-06T13:44:00.000-07:00

It would be wrong if I went all though November with no post about Thanksgiving! So here it is...in December. So here is a video of Whitney on her 2nd Thanksgiving day. We had a lovely time at Thomas's parents house and visited with his 3 siblings. My side of the family had a big get together out in Mesa with 50 something people.

I am so grateful that my husband has a good job. He is very good at his job. I am very grateful that I am able to be a stay at home mommy and get to go to school. Thomas works so hard for us. Every now and then he gets a lunch break so one day Whitney and I took him lunch and ate at the park next to his work. I made him an Egg cheese and bologna sandwich, the egg was a little runny and I forgot the ketsup, but he really enjoyed us coming!

My princess. What more can I say. She is my world. It's not perfect but I love it. She loves to read, play piano, and text/talk on the phone. I'm ever so grateful and humble to be her mother.

I'm grateful for being able to tube feed my daughter. Of course I'd be more grateful if she would just eat but the tube is saving her life right now, so I'm very grateful for it. So thankful for her doctors, pediatrician, GI, Surgeon, Cardiologist, and her many therapist! So grateful for my mom who come to all the appointments with us and helps us so much. We love living with them too!

And grateful for...Dolly? No. Puppies? No.. jk. For my testimony of Jesus Christ, my savior. I believe in God, the eternal father and in his son Jesus Christ, and in the Holy Ghost. Sometimes my testimony may be really small but it is always there, holding me together. I know that families are forever, a living prophet, the Temple, and my church, the church of Jesus Christ of Latter Day Saints.

2011-11-29T23:36:00.000-07:00

I was just reading a blog from a friend whose baby Lucy passed away. She said that she wished she'd been better at just living in the present, and not always planning and looking forward. I also struggle with living in the present. Sometimes, the present just sucks, like vomit everyday. I'm really looking foward to supercross, wicked, mormon tabernacle choir concert in phx, possibly the P.O.P.S.I.C.L.E feeding disturbances conference, and Christmas. My friend inspired me to live in the present. I don't want to take anything for granted and never miss a moment of my daughter's life. So, now, even though there is much to be done, I'm going to go snuggle her just because I can.

About me!! Breaking Dawn Spoiler

2011-11-18T21:09:00.000-07:00

I know this is rare but this post will be all about me and my friends having a great time last night!

As you can tell from the picture, we saw the midnight showing of Breaking Dawn. My friend Rachel won tickets from the radio station for the Premiere Party at the Scottsdale UltraLuxe Theater. I so glad she invited me and two other awesome girls!

TEAM EDWARD

So I drove the 45 mins there because no else really had a good car, which is fine because I like to drive. Mostly though if it's with my husband because his driving skills bug me and make me car sick! Anyway so when we got there we decided to eat out at Denny's. We split a Grand Slam and Rach and Alix also split some avocado tomato mess. :) We had a great time just talking about anything and everything, sometimes acting like high schoolers! Of course I didn't really have friends in high school so it was way better! Abbey joined us and we got to know her and Alix and I shared our daughters "medical stories" with her. Then we left for the theater!

Got there just after 8 pm I think. There was some stuff to do at the "party" but not much. There wasn't a ton of people there either. Somehow I still had a ton of fun! We all were looking forward to this all week long so it was fun because we made it fun! The trailor for the movie was awesome. I'm really not use to going out with friends so I was a bit nervous, but like I said, it was fun. So we just spent like 3 hours waiting for the movie to start and doing random stuff. It was assigned seating and we got good seats with out waiting in line!

Everyone loved the movie!! I on the other hand...not so much. They have all read the books so I was surprised they liked it so much, but they are huge fans of Twilight saga. I was not tired at all watching the movie! Spoiler Alert. The first part of Breaking Dawn was slow...like 5 different whole songs played in row and not much talking. They got married and went on the honeymoon. ( I have not read the book btw). The next part they were pretty much having sex or talking about it the whole time. Kinda awkward at some points!! Unfortunately some mothers exposed their little girls to this. Then Bella got pregnant and really sick. She was pretty much really scary looking the whole time and freaked me out! Everybody was fighting... keep baby or kill baby... Then the baby killed Bella. It was kinda hard to be sad because she was so gross looking. Then at the last minute she turned to a vampire. Sooo maybe I'll watch it again right before the last one comes out next year. :)

I took Alix home and Rach went home with Abbey. I would hang out with these girls again in a heartbeat. They're all pretty much amazing. Alix and I talked the whole time home and even missed our exit! I'm actually really surprised that I didn't cry and any point during this evening because we talked a lot about Whitney and Lily. I really try to force myself to not cry, disconnect. I don't know why...maybe I want to be strong or maybe not get embarressed. I almost cried on the way home but instead turned up the radio to max. Got home around 3am hugged Whitney and Thomas and fell asleep around 4am.

The End.

Same old thing

2011-11-13T17:09:00.000-07:00

I know I haven't written much lately, just a bunch of cute pictures. This blog also contains a ton of cute pictures...mostly of Whitney, because well, our life pretty much revolves around her. Suppose there is nothing wrong with that though! This past week has been pretty good. We always love hanging out with friends and family to pass the time. Whitney loves to read, play the piano, take baths, play outside, hang out with friends and family, and of course sleep. She's teething right now again so she been a little bit grumpy and restless at night.

We went to a different GI Dr. at Banner, vs. Dr. M. at PCH, for a second opinion. It went really well. Unfortunately she also says that according to Whitney's height and weight, she is still "malnourished." But I think she is smart and active! Thomas had this day off just because, and boy did he get a lot done... all my cleaning and shopping! Which was great because I spent the day at school, the dentist office (NO Cavites!), and the Dr.'s office.

It was really cold this one morning when we woke up. It had rained all night! I had some warm clothes to wear, but this was the only warm outfit Whitney had! I was searching her entire wardrobe only to find mostly shorts and dresses! I didn't realize it was going to get cold so fast! But of course it has warmed back up, crazy weather. Anyway I still need some warm clothes for Whitney (and me!)

Whitney likes to "feed" her Dolly. I simply tell Whitney that Dolly needs a drink and she will find a toy cup or bottle and give it a drink! So cute! Hopefully this pretending will her Whitney eat one day too!

My youngest sister's birthday was this week and she turned the big 21! Wahoo! She came home for the holiday weekend and we had family party for her.

We've been having lots of fun playing outside now that the weather is great! Going to the park and playing with friends. We are still staying away from big crowds of people where they are always coughing, and breathing on us and wanting to touch Whitney. I think a non crowded stores are fine to take her to if she stays in the covered shopping cart and doesn't touch things or get touched.

This is Whitney's new thing. Riding on her Great Granny's walker. I think Great Granny enjoys it too! Whitney's second cousin in Utah, Penny, always rides it and now Whitney caught on to the free joy ride too.

My beautiful little lady. Practicing for our family pictures to be taken this week.

I love my little family of three! Thomas is really the world's greatest dad and husband! Whitney is such a sweetheart and keeps me going! And I'm pretty sure they love me too!

Not sure if I've mentioned this before but FYI I do have another blog. http://whenwillwhitneywean.blogspot.com/

It's nothing much, just were I can write about all her feeding/eating issues.

Picture update

2011-11-01T20:20:00.001-07:00

Whitney K. in her fancy new bike trailor for the first time! Wasn't too fond of the helmet but enjoyed the ride till she fell asleep!

Here is Whitney at the AZ state fair! Just to compare to her totally awesome caricature!

WHITNEY "Already walking" "I can't wait to drive!"

Thomas and I had our caricature's done back in 2007 at the fair by the the same artist!

Whitney loves to try shoes on! I'm trying to teach her the sign lanugage for shoes.

Dang it! Haha! This is what she learned today!

Pumpkin

2011-10-26T22:51:00.000-07:00

Sorry it's been a while since my last update. I'm really glad that Thomas wrote our story about Lucy. I still can't believe she's gone...just like that. It's going to be really hard with the holidays coming up for her family to be with out her, I'm sure. But I know that they are coping well because we know Heavenly Father's plan of happiness Learn more here!

We are doing really well here in the Montgomery family! I'm loving my Food and Nutrition 241 Lecture & Lab! It's very informative and fun. I've been wanting to take this class for a while now to go towards my associates degree, but it ended up being really good timing. I love learning about nutrition, especially for Whitney and my family. Thomas is always working very hard and overtime at his job! He is a wonderful Father and & Husband! I hope I can raise my children to be responsible, self-disciplined, and loving like their daddy!

Whitney had a cardiology appointment earlier this week and got an echo done. She did really good with that because her Grandma brought her small play piano. We held it above her head and she just played with it the whole 20-30 minutes! Everything is still looking pretty good, at least nothing is getting worse! Pulmonary hypertension is hanging out there still and he increased her dose of the Sildenafil because she's gaining weight. The PDA is doing fine, still very small. The ASD is okay but that will need to be closed in a few years (maybe when/if Whitney re herniates). Dr. Puntel just wants Whitney to grow and be healthy and strong. They might need to do a procedure called cardiac-perfusion-scan to see if Whitney will need another cardiac cath done with in the next year. Also I asked how many more echocardiograms does she need and he said that he still wants one every other month. Eventually, it will go down to twice a year, then once a year up until Whitney's a teenager! Crazy!

I love taking pictures of Whitney in her favorite chair! So here are some recent ones! Whitney is 15 months old, about 18 lbs and 30 inches. She is so much fun and so adorable! She is getting smarter everyday!

For Halloween this year Whitney is a Pumpkin! In fact, we are all pumpkins! I think it turned out pretty darn cute!

I can't believe how lucky I am to have such a cute lil' pumpkin!

This is Whitney last year for her 1st Halloween! It's incredible how quickly babies grow!

By the way, tomorrow is my birthday :)

The passing of little Lucy

2011-10-16T07:27:00.000-07:00

This is Thomas writing. I know, its been like forever.

I woke up Friday morning, I had already slept through my morning alarm clock a little bit and I was in a rush to get out the front door to head to work. I got my work clothes on, put on my shoes, combed my hair and was about to head out of the bedroom door when I saw something unusual. There was a huge pile of used facial tissues piled up a foot away from the computer sceen. Three feet further away was the trash can, so it was clear to me that whatever Alicia was reading the night before caused her to be super glued to the monitor to the point where she didn't want to get up to throw away the snotty tissues. And then of course there were those tissues. She had clearly been sobbing and I knew she was not sick. And of course the thought passed through my mind that maybe it was something I did that I was oblivious to (that's happened a couple times), or maybe something else. Once a few years ago Alicia ran over a stray cat who darted out in front of her and Alicia was completely distraught about it for days and during which she didn't want to tell me what happened and the whole time I was thinking she was upset with me. I didn't want this to be one of those situations again.

So although I was already running late for work, I snuck back into the bedroom, Alicia was still sleeping, I softly woke her up being careful not to make much noise as Whitney's crib is in our room, and told her I saw all the tissues and asked if anything was wrong. Alicia asked if I really wanted to know, and I replied with a soft "Mm-hmm". Then in a helpless tone Alicia said, "Lucy died." I knew who Lucy was because Alicia always talks about her and her family and their struggles. Lucy was a baby that was born right around the time Whitney was born, and althrough Lucy had different medical complications than Whitney, they both had feeding tubes which is how Alicia and Lucy's mom hooked up. Alicia was an avid follower of their blog (http://elizaandchuck.blogspot.com). Even if I were doing something important on the computer, Alicia would kick me off if she knew there was a new post to be read on their blog. Alicia was very emotionally invested in Lucy's well being.

So when the news hit me that Lucy had passed away, I knew this was a very sad time. I laid there in bed with Alicia and held her, forgetting about how late I was going to be for work. Our hearts, thoughts, and prayers are with Lucy's family. This especially hits home for us as Lucy is the same age as Whitney and we are forced to image what their family must be going through. Yet we celebrate Lucy's short life and the impact she's had on so many, including us. And we rejoice in our common faith and understanding of Heavenly Father's plan of happiness and our true purpose for coming here on earth. How we wish Lucy could have stayed longer to enrich our lives even more. But we are humbled knowing that Lucy was needed more so in the celestial courts on high. We love you and will miss you, Lucy.

Love Livin' Life!

2011-10-13T20:05:00.000-07:00

So it has been a little longer that usual getting my blog updated, like 2 weeks, haha. Life is busy with a toddler! And one who doesn't eat is even more time consuming!

Took Whitney on her first bike ride. A friend let us borrow her bike trailor and and another friend has a new one that I can buy for cheap. It was fun riding with her and my whole family! I got tired fast though so I need to do it more often!!

I love seeing all of Whitney's books open and her reading them! So adorable how much this girl loves her books. She always wants to sit on my lap while I read her a book.

We also got Whitney her flu shot. She needs a "booster" shot in a few weeks. Chances are still slim that she will get the synagis shot to prevent RSV. I've talked to a lot of other "special needs" mamma',s they didn't get the shot the second time and their kid got RSV and were hospitalized! So I'm super nervous about this season, and it's going to be really difficult keeping her at home.

Whitney loves to play and run around outside. She loves to feed all the turtles with her Gramma.

Last week we saw the pediatric surgeon to do a check up on Whitney's Mic-key button (g-tube). She's happy with it and says everything is going good! We are going to see her again next week to change Whitney's button and learn how to do it my self.

When we get a new couch, it is not going to be dark brown! It always hides Whitney's pretty hair!

Thomas had a Dental School Interview with Denver last weekend. He said it went really well and he had fun. He has another one here in Az in Dec. and one more lined up in Jan. in CA. I really hope we get excepted some where, mostly here though.

We are still doing speech/feeding therapy, which is going pretty well. Whitney is doing much better with her meals and seems to be eating a little more by mouth. She is finally gaining weight and not vomitting on the Goat Milk Formula. Whitney now weighs 17 lbs. 7 oz. And is almost 15 months old!!

Whitney loves climbing up this chair and standing on it. She loves to sit and rock in it for a few seconds too. Yes she has pectus excavatum that can be clearly seen in these photos. Enjoy the may adorable faces of Whitney.

FUN

2011-09-28T12:20:00.000-07:00

When I first started this blog it was to update friends, family and CDH families about Whitney. So the first 8 months or so I've talked about medical issues like, heart, feedings, shots, Dr. appts., physical therapy, ect. Then I posted a bunch of fun pictures like Christmas and stuff while also talking about other things. Things were good for a while, then the cardiac cath and upper endoscopey posts. Then I talked more fun stuff like birthday! Then she got her G-tube and I've tried to keep a good balance of fun and boring (ie medical stuff). So now, besides all the stress of keeping my baby feed and healthy, life is pretty good.

I've been trying to get us out of the house more often but it's difficult when Whitney is either feeding/throwing up or sleeping all the time. But her feeds are getting better except that I haven't been feeding her enough. She hasn't gained weight since the G-tube surgery and I think that I haven't been feeding her enough. It's hard to know because when I was feeding her alot she would always vomit, so I feed her less and she still vomited a little. Any way I really got a get her to gain weight or they will want to change the G-tube to a GJ-tube (goes far in the small intestines) and/ or do a fundoplication (wrap stomach around sphincter). I really hope that she doesn't need either one of these done, but I'm preparing to do them if she doesn't gain weight.

My husband and I took Whitney to the Mesa Temple. We just wanted a quiet morning to walk around and feel the spirit with our daughter. I love going in the visitor's center and watching all the video's. We went to the LDS book store's while down there too. There is a huge park a cross the street that we played at. Whitney didn't like the swing or the slide and just wanted to walk around in the sand. We ate at Subway and came home. We all quit enjoyed our day. :)

I love it when she's happy! Although her 3 teeth on top really bug me cause it's not even! lol

Whitney sitting in her favorite rocking chair eating. I usually start at the high chair and when's she had enough we play. Her meals go in her at a rate of 1/2 an hour when awake and 1 hour while she's sleeping. I know it's still a bite warm for leg warmers but they are just too cute. She wore them to the library and got tons of comments on how cute they and she was. The Glendale library is much more baby friendly than the Peoria library!

Whitney loves to play in the kitchen! What kid doesn't!? She pulls out all the big bowls, the measuring cups, and drinking cups. She also loves for her gramma to hold her while she cooks.

We went to the splash pad last week and Whitney loved it! As you can tell by her face. She just laughed and screamed happily and played in the water. There were quit a few other kids there so I had to stand right by Whitney to make sure they didn't touch her. From experience, Whitney loves to follow other kids around but if they touch/hit her she cries and screams and vomits! Also I don't want her tube accidently touch either because it is still very sore. So yeah, I'm the mom who will kindly ask the child to be careful and not to touch Whitney, and will either block them her pick her up while their parent doesn't care, lol.

Her CDH story video.

2011-09-24T22:17:00.000-07:00

Here is an amazing girl telling her story and giving hope to us CDH survior parents. She is adorable and inspiring. This video practically made me cry.

Feeding Issues

2011-09-24T21:52:00.000-07:00

Still!? You ask. Yes, and from my experience I don't think her oral aversion will be getting better anytime soon. In my Food and Nutrition Lab the other day we did a Taste Test Lab. First we were taught about different tastes like sweet, sour, bitter, salty, and umami (savory or sweet and salty combined). Taste are mostly environmental (what you grow up eating/are use to eating), but it can also be genetic. So, Whitney, baby, I'm sorry but I'm a very picky eater so that probably doensn't help you much. The teacher told us about it earlier and said that we don't have to eat anything if we're allergic or don't want to. I was thinking that I might, then I thought no, then I thought maybe I'll try it. When the lab was explained to us I made up my mind...definitely not! First I was concerned about germs and everyone double dipping and cross contaminating. Plus this one chick was coughing everywhere and said that she's been sick! Then just by the looks of what we had to do, I really didn't want any of that in my mouth. So I asked a girl if I could help her and copy her answers. Everyone else in the class did the whole lab!

First we my partner drank different types of milk and described them, then the cream cheeses. They have different herby flavors like dill, thyme, oregano, and basil. When she opened I gaged with the smell and had to cover my nose. Also my partner kind of double dipped. Then she sampled cheeses and breads and just described what they tasted like. My partner gaged at the rye bread and almost made me want to throw up.
We moved on to sweeteners. My partner ate maple syrup, pancake syrup, corn syrup, honey, molasses, sugar, and artificial sweeteners. Just looking at that all that sugar made me sick to my stomach.
The we did an experiment to see how long it take to adapt to a taste. So my partner put some salt water in her mouth and I timed it to see how long it would take for the taste to go away! She was almost crying it was so nasty! She held it in for almost 2 minutes! I told her that she really didn't have to do this, and that she was brave.
The worst one was where we had to us a nose plug and close our eyes to see if we could still taste food. I dipped a cotton swab in the cup of stuff and gave it to my partner and she tried it to see if she could taste it. She was able to taste all of them even though she couldn't smell it. First I didn't want to put nasty cotton in my mouth. And I really would have puked if I ate some one these foods. The first one was chocolate syrup, then soy sauce, the third was tomatoes (GAG, never have and never will eat a raw or cut up tomato), the next was coffee (I don't drink and can't even stand the smell), and last to be tested was chicken gravy (room temp, nasty).
Something about tasting papers, okay eww, that made everyone gag. By this point I was getting a headache, and I wasn't even trying anything!!
The last experiment was to determine at what strength one could taste a substance. There was salt water, sucrose water, acidic water (lemon juice), tonic water, and MSG in water. Again with the cotton swab/ Q-tip.
So after suffering though that Taste Test Lab, I can definitely see why Whitney gets so anxious and scared around food. I feel so bad for her. I don't think I will reach my goal of weaning her off the tube/becoming an oral eater by December. We could probably use more professional help. I want to take it slow with her and not make her eating aversions worse by force feeding her. I mean she does put food to her mouth. Like today she put an apple in her mouth for a second, then put it on the floor. The other day she actually took a couple bites of some "rubbery" turkey bacon. I am trying my best to help her and keep her healthy. She gained a whopping 7 ounces in two weeks! We are trying a the medicine again called Bethenachol, that helps strengthen her lower esophageal sphincter. So it is, has been, and will be a workin' progress.
here are some videos about feeding issues by our local group called P.O.P.S.I.C.LE. (Parent Organized Partnerships Supporting Infants and Children Learning to Eat).

Remembering

2011-09-13T23:16:00.000-07:00

A little flash back...
I feel bad not posting anything on or about 9/11. I was 14 going on 15 years old, a freshman in H.S. I was not at school like most wear when it happened. I was in Utah, sleeping with my sisters and cousins. in my aunt and uncle's loft of their 3 story plus basement house. We were up there for my mom's dad's funeral. My uncle came up and turned the t.v. on. We woke up and watched it, very confused. I don't remember much about what I did, just that I was sad and couldn't stop thinking about the it the whole day. We drove home that day.

MySpace Comments Chromaluna.com

MySpace Comments Chromaluna.com

Another flash back...
I know I don't normally think or write about the past but this is different. This time last year... my husband and I spent the night at the NICU with Whitney for the first time! Because the next day, September 14, we took her home! It was the happiest day and I'm getting emotional just thinking about it. Anyway, I'll have to think of something to do for her and me to make it special!
I have a big picture of her homecoming on my framed on my wall. I also have a picture of her a couple days old framed on my wall. And a more recent one of her. :)

We had an appointment with Whitney's pediatric surgeon this week. The pediatric surgeon said that she's not ready for me to do the blenderized diet/homemade formula. The Dr. is just concerned that it will clog the tube. The tube cannot be replaced till the end of October (2 months after surgery). So, if it were to clog with thicker formula, we couldn't use it till it's able to be replaced. The surgeon is always saying how she had OCD (obsessive compulsive disorder) and that she'd rather prevent things then have to fix them! I'm perfectly okay with that and love that she has OCD! We will be seeing her every 2 weeks for her to checkup on the g-tube. Thats a lot of visits and a long drive!

I have a lot of family (and friends) Birthdays in September! Happy Birthday to Grandpa P., Grandma B. my brother, my brother in-law (my sister's husband), my brother in-law (my husband's bro.), and my father in-law! Also, Happy Birthday to my best childhood friends Whitney S. (W.) and Alyssa M. (R.) I really love and miss you all!

Keeping Whitney Well

2011-09-09T22:57:00.000-07:00

This past week has been way busy (seems like I'm also saying that ha ha!)! I'm loving this food and nutrition class I'm taking and so far I'm getting a really high A. I was never really dedicated to good grades in high school so this is quite the accomplishment for me!

Whitney saw a different speech/feeding therapist in Scottsdale because our usual one is outa town. She was pretty nice and Whitney liked her. She said we were doing all the right things to help Whitney learn to eat. Then we got her weighed and it was the exact same as it has been all month! 16 lbs. 14oz! I'm dying to get her to reach 17 lbs! We got Whit weighed the week before her Gtube surgery and she was 16 lbs 14 oz, did not get her weighed the week off surgery, the week after she was the same 16.14, and now this week it's still the same! So weird! And frustrating! She's doing the same eating wise as she was doing with the NG tube. Still vomits once a day! Except for Sunday and today!

Yesterday I took Whitney to the pediatrician to look at a rash on her body, actually it's about six rashes and they are from the sticky monitors in the hospital! Two weeks ago! Looks like ring worm! (haha Brianna!) The dr. prescribed us some cream to help heal it, stronger than cortisone. So hopefully that will help.

The Dr. also said that Whitney probably won't get the Synagis shot to prevent RSV this season. Which is sad because she is still really at risk and it would be tragic if she got that virus. That being said we'll get her the flu shot and will be keeping baby Whitney indoors once again! Some info: Nearly every child has had the virus at least once by age two. For babies born full-term and without complications, it is typically a bad cold. But, the highest risk factors for contracting RSV and developing complications like pneumonia, bronchiolitis, and other sometimes fatal complications are; being born premature, being born with a lung condition, or being born with a heart condition. Whitney is at a high risk! Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Whitney safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands, and up to twelve hours on objects. If Whitney contracts RSV she will likely be hospitalized since she does not have the necessary immunities to fight off infection like the rest of us. Last year alone, over 125,000 infants in the US were hospitalized due to complications from contracting RSV. Please be prepared to take off your shoes and wash your hands upon entering our home.Please refrain from coming over if you are currently experiencing any illness symptoms, or have been in close contact with anyone showing symptoms. If you are a parent of young children, please refrain from bringing them into our home during RSV season. The most common form of transmission is from child to child. Please do not let these precautions frighten you or stop you from making contact with our family. They are simple precautions that every loving parent with a fighter like ours must take during this season.

When I was reviewing my pictures I noticed that Whitney always grabs her little foot!

This toy vibrates when bitten on. It's actually pretty intense! Whitney will walk all around with it in her mouth.

Roxy Girl!

Her shirt is wet from vomit and still grabs her foot.

I was worried this dress wouldn't fit...but I made it fit!

She's obsessed with her pacifiers!...Should I wean her from them!?

She just woke up from a nap so I laid her on my bed to tube feed her. Then I put her in the high chair with some snacks. Her meal is about 20 mins. long.

When the pump errors, Whitney always 'helps' me shake the bag or push buttons on the pump!

Loves relaxing in my childhood rocking chair.

Chewy tube (feeding tool) in her mouth. You can see her Gtube sticking outa her shirt!

She loves my kisses! haha

Patterson Family Professional Photos

2011-08-30T18:21:00.000-07:00

I have to give credit to Emily Buck http://emilybuckphotography.blogspot.com/ for these amazing photos of my side of the family. We actually had fun doing these pictures even though it was 110 degrees outside. We drove about thirty minutes to Anthem az to take these. My brother and his family where here from UT so (on very short notice) we decided we needed new pictures with the two new comers Whitney and Alyssa. Anyway it was totally worth it! Thanks Emily!

Whitney, Alicia, and Thomas Montgomery

Tim & Jess Hedgecock

Mindy, Derek, Brad, and Alyssa Patterson

Thomas, Whitney, and Alicia

Colton, Dad, Mom, Brianna, and Clayton Patterson

Everyone!

Proud Grandparents!

This one is so fun!

Beautiful pond in background

Whitney Kaholumehekainani Montgomery

Thirteen months old

six siblings from youngest to oldest

Gastrostomy tube Surgery

2011-08-28T23:31:00.000-07:00

This past week has been super busy... after my family from UT left to go back home. I started school, taking one class at the local community college in efforts to get my associates in general studies (AA). I went to Tuscon with my mom and Whitney to see a new feeding therapist and dietitian to help with the blenderized diet. I think that drive was worth it! We'll be going back again in a month. And of course, Whitney got her G-tube!

That went really well, considering it's a surgery. There were no complications and Whitney is healing nicely! She's not needing as much pain medicine anymore. We really just tried to keep her comfortable and entertained. She slept alot in the hospital and liked riding in the wagon. She preferred to sit on the chair instead of her crib. We got to go home the next day in the late afternoon. I will take a little while to adjust to the G-tube. She still throws up everyday. I'm really excited to do some blenderized diet and get real food in her. I'm just really freaked out that it might pull out on accident! I'm extra cautious around it and very gentle with little miss Whit. It is really so nice to have that NG tube off her face. Now every time I see I think how beautiful she is...it's like a new her! She not quite on her normal sleep schedule yet. Things should be going well in a few weeks though.

A Week with the Patterson's

2011-08-22T23:03:00.000-07:00

MIM

2011-08-22T22:25:00.000-07:00

A couple Saturday's ago my family went to the Musical Instument Museum. It's new and was pretty cool. Took about half drive and of course Whitney had to throw up when we got there. They give you headphones and you just listen to music from different countries.

They had a room where you can play the instuments! Whitney loved that!

my siblings...and rhett and a random kid in the back jamin' out!

I let Whitney borrow my headphones to listen to some fun music!

Kissing Whitney

2011-08-22T01:01:00.000-07:00

I feel like I've been neglecting this blog a little this past week or two. I've started another blog about Whitney's feeding issues. I'll still talk about it here some but I'm really going in dept on my other blog. Mostly so I can think it all though in writing while hopefully helping of moms of Tubies. Whitney's feeding are really our main concern right now and although it is rough, it really the only "side effect" of her early struggles. I am so grateful that she doesn't have any other trial that could have been due to everything she's been through. I've read it's common for babies to be blind or deaf or neurological problems from ECMO, and Whitney seems really Smart! She doesn't have anything majorly wrong with her heart or lungs (just pulmonary hypertension which is under control with meds). Anyway the site for that is

http://whywontwhitneyween.blogspot.com/

Beautiful Whitney bathing after NG tube came out.

The hair grow longer everyday!

Doing the Best

2011-08-20T16:40:00.000-07:00

Quick Update since this week has been busy, in a good way! My Brother and Sister in law and their two kiddies came down from Utah on a days notice! We've been having lots of fun hanging out, swimming, shopping and taking family pictures! I also had some good friends come over to swim and eat and some cousins! I post pictures later! Also I'm trying to prepare for next week's business! I start school! Just one class at the Community College about Food and Nutrition. Then Tuesday we are driving to Tucson (2 and a half hours) for the feeding therapy for Whitney. Then Wednesday it's her G-tube surgery and dealing with that all week. I truly wish she would just eat! No mother wants to put there baby though surgery and another scar when they already have 3! I just feel so bad because she doesn't know what's going to happen. All of a sudden she'll be screaming scared, then waking up in pain confined to a hospital bed. Anyway some how I just really want to show her that I love her and am doing the best for her.

Visit to Chandler

2011-08-14T23:49:00.000-07:00

Went to Chandler earlier this month with my mom and Whitney, we visited a friend and talked with her mostly about feeding issues and g-tubes. We swapped our stories and I learned a lot of useful things. Her daughter's esophagus was not attached to her stomach so she got a G-tube at birth. After a few surgery's she was able to eat and they weened her on off the tube around 10 months old. Afterward we went to Option One to switch the flavor of Formula. I got chocolate and tropical flavors and Whitney only likes the non-flavored. The company wouldn't be in our area any time soon so we drove there (one hour away). On our way home we stopped at Ikea for fun. Found these two pictures that I can't live without! Maybe I'll get them in a few years though...

Played in the children's area.

Eating her first french fry, she actuall enjoyed it.

Exhausted.

Whitney's 1st Birthday Luau!

2011-08-12T17:29:00.000-07:00

This was one amazing Birthday party. In Hawaii, it's common to have a big luau for a baby turning 1 year old. It's been said that many babies did not always make it to 1 year old, so when they did a big celebration was in store. All of the families and friends were invited to enjoy the festivities. We feel this is especially appropriate for our daughter Whitney, it's a miracle she's alive and she is part Hawaiian.

We had so many loving friends and family join us to celebrate Whitney's 1st Birthday (about 65). There was great Hawaiian food Catered by L & L's Hawaiian BBQ, decorations I picked out from Party City and the Dollar Store, a slideshow of Whitney's first year that Thomas made, Hawaiian music provided by Merry. We also had some amazing Hawaiian dancers!......by Seini King at HULA HALAU O MAKALANI - HEAVENLY EYES HULA. It was so hot outside that everyone jumped in the pool. An fantastic photographer provided by Kehau..his name is Nick. http://www.thisisnick.com/ By the looks of these pictures he was obviously great! Mine and Whitney's outfits were made special by Trish at http://mysecretgardenboutique.shutterfly.com/ I also had a sweet candy buffet and a beautiful cake made by http://katiecakestheblog.blogspot.com/ I have many talented friends!

Whitney had a pretty good time too! She loved the hula dancers and mashing her cake! I loved everything too! And of course opening her presents! So there was this forum online ( I think Parents.com) asking about how much you spent on you child's 1st birthday.... $10, $50, $150, or $500 or more. Some were like, I spent almost nothing...the kid won't remember it anyway. Lot's said they spent a lot of money mostly on food and decor, and others said that they spent over $500 because they wanted a huge celebration and that the party is mostly for the parents anyway! Yeah, that was us too, way way over $500. Call us crazy but it was definitely worth it!

All About Whitney!

2011-08-08T01:27:00.000-07:00

I've learned that "titles" are very important. It's what gets us intrigued about reading the story. Well, it's really hard for me to come up with a good title but I hope you read it anyway!

I feel like I haven't written in forever! So the week right after Whitney's 1st Birthday Luau was super busy. First off, the Luau was a ton of fun! I will post the pics as soon as I get them! The Monday we spent almost 6 hours at PCH just for 2 Dr. appointments. First was the Cardiologist. Whitney got an echo, which she hated this time. She was fine when she was younger but now she just cries the whole time and we can't console her. Everything is still the same in her heart which is a good thing. Dr. P. thinks she need another Cardiac Cath in a year and to stay on the medicine till then (to help with her pulmonary hypertension).

My mom and I ate in there cafeteria. It was super yummy and not expensive!

Then we went to see the pediatric surgeon for a follow up. When she came in and saw that Whitney still has the NG tube she said that Whitney is the last person she want to do a G-tube on. And... I was like really, cause we want one. So then she said that it is do-able. I guess Whitney just has some complicated insides and lots of scar tissue. So I only trust this surgeon to do it. They showed me what it looked like and told me a little about it. She's just had to tube for so long and I really hope that this will help her!

I have been doing a ton of research about G-tubes (as you know), just trying to learn everything. It's really not that big of a deal. *Still wishing she would eat*

While at the hospital I'm reminded of how much harder it really could be. There was a baby on a breathing machine (trach) and she had a lot of gear! I can't believe I complained about caring the oxygen, oximeter, and feeding pump. There could have been so many and much worse effects of CDH. I realize how blessed I am to even have Whitney and that she will live a normal life. I thank my Heavenly Father daily.

The next day was feeding therapy and a weight check. Whitney gained 8 oz in 2 weeks. Now she weighs 16 lbs 10 oz. Later that week she had physical therapy and they say she is doing really good and will need it less often! And to focus more on speech therapy. Then we went to the Pediatrician for her one year checkup. Got the last two shots in a series. I do like her but she was just telling us some "normal" things to be doing like start weening her off the bottle.....uh! No prob she hates the bottle and will only drink in her sleep. But the therapist said to keep doing the bottle but push for the cup and try a straw now (not asleep of course). Any way that was a really busy week but we ended with BOWLING! so fun! Whitney came for the first time!

Whitney also got another upper GI to see her stomach. The surgeon needed it to prepare for the G-tube surgery. I thought it would be easier because they would just put it through the tube. But not for poor Whitney who screamed the whole time. She had to lay on a bed with the big xray on her, it was very scary for her. When they were pushing on the syringe of barium it detached and squirted all over me and some on mom! Gross!

Whitney is still doing the same old thing. Not eating and vomiting once (or twice) a day. I thought that if I do the same feeding schedule for a while she would get use to it and be tolerate it. But no. Then I tried a new one and she still threw up! I even tried to give her less volume and she STILL throws up! Maybe I should start a separate blog about her feeding issues. I know I've read a ton of blogs specifically about stuff like that and tube ween's.

Whitney & Carsten

Lately she likes to crawl or walk around with things in her mouth. One time she had a rummy tile (not a good idea) and had it in to far so we quickly got is out she starts bawling. I hate making her oral aversions worse!

Won't let me brush her teeth!

But they sure are sweet when they sleep!

"Eating"

Whitney feeding the Turtle

2011-08-05T22:21:00.000-07:00

While I'm anxiously waiting my Luau photos I'm dying to post something so here is a short cute video of Whitney feeding Gompers. Last night during the lighting storm we got her shoes on so she could walk around the backyard. This morning she found her shoes and tried to put them on her own feet! So I put them on for her and took her outside. Then the turtle started following us everywhere so I grabbed some lettuce to feed it. Whitney loved feeding the turtle but I was really nervous that it might bite her! So I keep a careful eye out for that :)

July 21st, 2011 is

2011-07-25T01:20:00.000-07:00

Whitney's 1st Birthday! I really cannot believe my baby a one year old! It has been an amazing year! I had a baby and was able to take her home. I feel so blessed to have Whitney in my life. I always wanted to be a mother. She is amazing and I can't wait to have more...in a couple years! Whitney has accomplished so much in her life so far...more than others can even dream of. She had a severe and rare birth defect called Congenital Diaphragmatic Hernia. I had never heard about this before now. Generally they say these babies have a 50% chance to live, Before Whitney was born, Dr.'s didn't think she'd make it, when she was born she was given an estimated 20% chance to live. Chance is a weird word to me. It is defined: the absence of any cause of events that can be predicted, understood, or controlled. But I believe in the power of prayer and God's plan for his children. Whitney is meant to be here, today. I held my baby girl when she was 15 days old. We took her home when she was 56 days old. It has truly be a roller coaster ride since we knew we were pregnant. But I wouldn't trade it for the world. I love my baby dearly.

Whitney has made so much progress this year with the help of many, many doctors and support from loving family and friends. Including, Dr. G (perinatologist), Neonatologists, Dr. P (cardiologist), Dr. G (pediatric surgeon), Dr. K (pediatrician), Gastroenterologist, Pulmonologist, nutrionist, phyiscal therapist, feeding/speech therapist, and all the many helpful nurses. Of course I couldn't do it without my husband, my family and my husbands family being right there with us.

Here are some picture of her actual birth date! My planned small family party grew to an extended family party because most of them could not make to the Saturday Luau. We got pizza and cake and presents! We had a lot of fun! I tried to hold Whitney and love her as much as I could...or as much as she would let me!

Loves to read books!

Big Grin

Whitney walking!

The Funfetti cake I made her

Birthday Girl anxious to open presents!

Present from Hawaii!

Two phones?! She got two of the same present and loves them both haha! And Thomas is taking a picture of me with a fake princess camera!?

Happy 1st Birthday

Surprised by the song singing

Mommy cutting the cake

very nervous about this...

decided to touch it!

wanted to mash it!

had fun and tasted it twice!

but would rather feed it to the dog (the dog was not allowed to eat cake though)

My princess

Grandma's Funeral

2011-07-25T00:06:00.000-07:00

My Step-Grandmother, Pamela Hatch Patterson Passed away on July 9, 2011. She was married to my Grandpa E. Arthur Patterson (my dad's dad). Here are a few pictures of us at her Funeral held July 15, 2011. Obituary:

Patterson, Pamela C. (Hatch)60, of Phoenix, passed away Saturday, July 9, 2011, with family by her side. She was born August 15, 1950 in Pocatello, Idaho. She was the daughter of Dr. Bill P. Hatch and the late Dolores E. (Hogan) Hatch. In her early years, she was active in 4-H and the AQHA. She was in the class of '68 at Cortez High School and graduated from ASU with a degree in Anthropology. She was blessed with many talents and was always involved in various activities. She is survived by her husband, of 24 years, Dr. E. Arthur Patterson, DDS, daughter Cara Thomas, son Bill Patterson, Step-children Suzanne Cook, David Patterson, DDS., Wendy Billingsley, Lynette Brogdon, Victoria Maher, Siblings, Mark, Laird, Lorin and Lori Hatch, 24 grandchildren, and 16 great-grandchildren. She was preceded in death by her infant brother, Craig Hatch. Visitation will be held on Thursday evening, July 14th, from 6:30 to 8:30 pm at The Church of Jesus Christ of Latter Day Saints, (Sunnyslope building), 8710 N. 3rd Ave. Funeral services will be held Friday, July 15th at 10 am with a viewing one hour prior at the church. Burial will follow at Resthaven Park Cemetery, 6450 W. Northern Ave. In lieu of flowers, donations can be made in her name to Barrow Neurological Foundation. 350 W. Thomas Rd. Phoenix, Az. 85013. Please visit www.hansenmortuary.com to send online condolences.

OK!

2011-07-19T00:18:00.000-07:00

So I know that I just posted a ton of stuff about our trip to Utah and Idaho but I really wanted to document it. Plus it's mostly just pictures and not a lot of words. So it should be fairly quick to read and look at all the adorable pictures of Whitney and my family! I love my family! It was really fun for me to get out of the norm of daily life and have a vacation! To bad it didn't last forever! Ha ha. Now the only thing I have to look forward to is Whitney's birthday, and after that, life will be the same. Sometimes boring, sometimes busy, sometimes exciting! Any way, I just really needed to get all those post done with before Whitney's big day...the big ONE! I have been so busy getting every thing ready for her Luau. It hope it turns out okay! In other news Whitney has taken her first steps! She's not 'walking' every where but definitely getting closer! Thomas has taken the Dental Admission's Test (DAT) for the second time and got a much better score that he is happy with. Last time was a 19, this one was a 21. He has applied to about 11 different schools and we should hopefully hear from them in a few months. Then it's time for interviews! As for me, I'm keeping busy with this girl of mine! Doing to usual daily tasks and weekly chores. Studying up on feeding aversions. Taking her to all sorts of different Dr.'s. And finding time to just sit and play with her!

The other day my friend threw Whitney a little party (because she can't come to the Luau). She is so thoughtful and so nice! We always have fun hanging out with them!

Singing to Whitney...she felt safer in the car!

A Birthday cake for me!?

Having way to much fun playing in it!

My friend's mother in law got Whitney a huge Pooh Bear! So thoughtful! And Whitney loves it!

Also...Whitney got her bangs trimmed again! They sure grow out fast! Pictures of her hair and hair cut. Here are some before, during, and after pictures! Enjoy!

Playing 20 Questions

Watching The Price is Right

It doesn't take long to trim her bangs but Whitney thinks it takes forever! I think mostly she just doesn't like the apron :)

So pretty!

Day 12 The End of Vacation

2011-07-18T23:39:00.000-07:00

Our super fun trip has come to an end. I hope you enjoyed leaving reality for a while. I sure did! It was another 11 hour drive back home. And when we got out of the car were almost died in the Heat....not really though, but seriously a huge difference. The funny thing is that Utahan's or Utahn's (apparently that's debatable) think it's hot in Utah. We stopped at the Glen Canyon Dam and went into the Carl Hayden Visitor Center. They had lots of Dinosaur stuff and even a book that I had been wanting to get Whitney for a while. Called That's Not My Dinosaur. So of course I bought it for her to have something new entertaining her car ride. All in all it went really well.

Whitney helping me pack.

We stopped at the Glen Canyon Dam

I wanna see!

All of us looking at the Lake Powell and Glen Canyon Dam

World's Greatest Grandparents!

And a fish!

Day 11 a walk in the canyon

2011-07-18T23:20:00.000-07:00

Provo Canyon is beautiful! If I lived 10 mins from something like this I'd walk it everyday! They weather was perfect and this is in July! Okay AZ is like 110 degrees! Crazy!

Whitney falls alseep pretty easily. We borrowed Mindy's stroller and of course put a towel down just in case, but luckily Whitney didn't vomit even though she was being tube fed.

Whitney, Alicia, Penny, Katie, Waterfall in back

We were actually trying to get out of the picture ha ha!

She woke up! And cute as ever!

Dad wondering off trail

Hold my hand! Don't let go!

Whitney always wants her Gramma, even has to hold her hand :)

Relaxing at the end of the one hour walk!

It rained again that evening and Whitney was dying to play in the rain. So I took her out in it!

I love Singin' in the Rain (the movie)

Day 10 Independance Day!

2011-07-18T23:07:00.000-07:00

My favorite holiday of the year!

Unfortunately I was very sick...stomach flu or something.

My mom was amazing and awesome to take care of Whitney all day for me.

Can't thank you enough, I know you love us.

All American Cutie

Day 9 Baby Blessing

2011-07-18T22:55:00.000-07:00

This Sunday we were able to do Alyssa's baby blessing. She was only 12 days old but Mindy wanted us there and I'm so glad we could be there. Baby blessing's are very important and we got to see a lot of family. My older brother now has 2 amazing kids! I have one nephew and one niece!

My entire family...missing Thomas

Alyssa Gayle wore Mindy's blessing dress.

My cousin's (from the Patterson side) daughter Isla and Whitney

All the guys

All the gals

Whitney, Jocelyn, & Penny

Playing with cousin Bradley, he was so loving towards her :)

They had lots of fun toys!

Matching dresses!

It so happened that my mom bought Whitney this dress before vacation and I packed it and then Katie gave Alyssa the same dress just because it is so cute! How Fun!

Just hanging out at the Oldham's. Whitney's first slide!

My love crawling around on the grass

Did not want to stand alone!

She was still mad, even with the pacifier!

Grand kids!

Alicia, Whitney, Mindy, Alyssa

Alicia, Alyssa, Mindy, Whitney (finally smiling)