Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Wednesday, February 29, 2012

19 months old

Whitney turned 19 months old in February!  So technically she is on her 20th month of life!  She is such a good little girl and absolutely melts my heart!  Every little thing she does or says is so adorable!  We love having her in our life! 

Whitney is about 19.5 lbs and 32 inches tall and in the 3% for her height to weight ratio.  She is so smart and learns pretty quickly I think!  She has lots of energy too.  Loves to play with the dog and her uncles.  Loves to play outside, in our backyard and at the park!  She still loves her baths and water.  She loves playing the piano.  She likes climbing on everything, even though she can't get down herself.  She's becoming more independent and likes to play on her own.  She really doesn't talk much at all but she can communicate to us really well through sign language.  Whitney knows about 30 words! Some of her new ones are Baby, Water, Music, Cracker, Home, Book, Ball, Swing, Slide, Car, and Cat. Her speech therapist is very good but Whitney still doesn't say much of anything on her own! 

 Whitney depends on a feeding tube (still) for all of her calories and nutrition.  Some things she gets through the tube are Goat's Milk, Quinoa, Rolled Oats, Banana, Apple, Crasins, Strawberries, Mixed Berries, Sesame Seeds, Avocado, Peas, Spinach, Sweet Potato, Walnuts, and a lot of Mixed Veggies, and Nutritional Yeast, Probiotic, and a multivitamin.  She is now on 4 different types of medications!  It actually makes me quite sad that my toddler depends on all of these! It makes me kinda emotional to go to the Pharmacy to get the drugs.  They always ask if I want to add flavoring and I say, "No it just goes through her feeding tube!  And can I have some extra 5ml and 1ml syringes because the measurements get wiped of easily when I use them 3 times a day." They are always so nice and understanding!  So some things that Whitney has tried recently are Gravy, Yogurt, and Applesauce.  She is really inconsistent but we try to make every encounter with food a positive one!  But now she won't eat those things anymore.  I always offer her something to eat during every tube feed so that she know she suppose to be eating it and so that she can smell it too. I took her out to eat the other day with a friend and her kid.  Whitney did pretty good sitting in the high chair.  I offered her a variety of foods I though she would taste but she just handed them to Carsten who happily ate all of it! It's a good experience for her and me too.  I did tube feed her while we were there but no one really noticed!    Usually though Whitney becomes very anxious around food and gets very upset.  Some of our goals for her are to eat an entire veggie stix or teddy gram or whatever else little food instead of just a couple of bites. Be able to touch food and not "freak out" about it being gooey or messy!  Also to accept a spoon of food without putting up a fight or fussing about it.  It takes a lot from her to take a bite of something... I have to say "Ready!?   Ok.  One,   Two,   Three,   Ahhhhhh!"   and I have to hold her hands down or put my hand gently under her chin.  I only give her a bit if she moves forward and accepts it, NO force feeding!  Anyway, as you know, feeding is a huge hurdle and we are no where near becoming tube free. I heard of a CDH survior having a feeding tube at age 5 and I thought that was crazy!  But back then, I had no idea how difficult it is for them to learn how to eat and gain the skills and confidence.  It's so hard when they miss that opportunity to learn to eat and have so much pain with food. I know I will never judge anyone's situation again!  Whitney's feeding therapist is very good too but once a week for an hour only makes a tiny impact!

It's been a pretty laid back week for us except all the usual therapy appointments and other visitors!  Whitney is finally doing well in Occupational Therapy!  This past appointment was the first time that Whit didn't cry the whole time.  But of course her therapist just went on maternity leave!  So we'll see how Whitney does with a new one!  Cross you fingers! 


Anyways! Life is great here!  We're excited for the flu season to be over with so that we can take Whitney out and have some fun!  I'm thinking the Children's Museum, the Zoo and Aquairum, Story time, Church, and more! 




Whitney loves singing "if your happy and you know it" and stomping her feet on the wooden thing.



Love getting into her Jeep and being pushed around




But hates it when a fly or bee fly in her face!




Stacking cups during her meal time




Getting very tired of meal time! haha! 30mins is a long time to sit there!




We walked to the park with Aunt Brianna and Gramma P.




So peaceful on the swing




Walking on the balance beam with Gramma




So cute and rare!  Whitney snuggling with her Soon to be Uncle Rhett! She was so comfy!



Just too cute!  They will be great (far-future) parents! We are so excited for them to wed!

Monday, February 20, 2012

About Our Weekend


Alright, enough blog posts about the doctor and therapy appointments!  Although Whitney did get her next to last synagis shot this week and had OT.  Friday was a nice relaxing day as was Saturday.  But on Saturday Whitney threw up once.  Later she got her very first bee sting!  Ouch!  She was outside for a while and a bee came in but my dad squished it.  My whole family went to Mesa for a choir concert.  Thomas and I were in the kitchen cleaning and doing dishes while Whitney was looking out the back door and playing.  All of a sudden she starts crying and didn't stop, so Thomas got her and I examined her and didn't see anything wrong.  I looked down at her feet and saw something on her left big toe.  I picked her up and held her still while Thomas examined it, thinking she just scraped some skin off.  He pulled it off and I asked if it was a stinger!  It was!  We examined her to make sure she was breaking out or having any allergic symptoms.  But she was fine.  We looked over by the door and saw a bee on the ground.  She must have stuck her foot out the doggie door and got stung or brought the bee in!?  Unless it was already in, because there were a lot of bees outside.  FYI Whitney is already extremely afraid of bees, and anything that really flies at her!  Right then my mom called about something and I told her Whit got stung.  She said to put baking soda/water paste on it and to get some essential oil.  Whitney pretty much stopped crying when we ran water over her feet.  She loves running water and it will distract her from pain and even vomiting! After we were done she didn't seem like it was bothering her at all, she stopped crying and didn't point to it. So I didn't give her any tylenol and we went about our day.




The culprit!

Were it happened


 Standing by the dying Bee


Sometimes we call Whitney our "delay fish" (aka Dory from Finding Nemo).  After the vomit and the bee sting we barely made it on time to our family dinner!  But they don't mind if we're late, as long as we get there!  But we were always late to things even before Whitney came along! haha!  Oh well!  Although I do like to be punctual, so we'll try harder!  At Thomas parents house we hung out with his brothers and parents and ate delicious kabobs!  Then we copied and folded the ward program and dropped it off at the church.  Thomas stayed tube feeding Whitney in the car while I went in and spent a minute at a friends wedding reception. 


On Sunday, Whitney threw up three times!  I think it was the flax seed oil in her blenderized food formula.  I accidentally put it in with the avocado and that's too much oil for her!  My dad stayed home with her while we all went to church.  We rotate every week!  Keeping Whitney home again from church and other social/crowded activates or stores has really helped keep her healthy!  I'm so grateful for all the help and support we get!  So after she threw up with her Papa P. he let her play in the sink while he washed her off. (of course he didn't get all her hair so she still smelled like barf).  She played for like an hour in the sink!  My dad's like, I don't think she'll ever get tired of the running water!  I texted him saying, nope! she sure won't but she does need to take her nap!  It's so nice when Whit gets to spend one on one time with her grandparents! Thomas gave her another bath of course! So her late nap made for a late night.  She just wouldn't go to sleep, even when I wanted too!  We put her in bed with me and she just climbed off.  So Thomas watched her and took some pictures. 


We bought these princess's for her at Disneyland earlier this year.



Usually she likes Belle the best but it seems she liked Ariel tonight



 Sometimes they go Ni Night too!


Hopefully they won't get all chewed up! haha!




Today is Presidents Day.  My dad and sisters had work off, and the boys had school off.  My hubby, Jessica's hubby, Brianna's Fiance all had to work though!  I thought we were just going to go on a bike ride but I guess everyone wanted to go hiking instead!?  So we went to Thunderbird Park and hiked up a hill where we can see the Phoenix Arizona Temple construction site!  They already dug a whole and put up some bricks to start the basement! We are so excited to have an LDS Temple near us!  Click on the two links to learn more about Temples!  Any way, our hike was pretty uneventful but really fun!



Whitney walked till we got the the mountain, then I caried her in my pack.







 I should admit, I was huffin' and puffin' and praying I would make it!  Haha!




 I made it about 3/4 the way up!  Yeah, I know, totally outa shape with 20 lbs extra on my back!



Water break




 Luckily, my Mom is a beast and carried Whitney the rest of the way up!




 We made it! A 20 min. hiked turned to 30 mins!




My family with the Temple Site in the back ground (it's by the blue crane next to the church building)







 Walking around the rocks!  Poor Cacti!




 Likes wearing Gramm's sunglasses




 Papa P. also helped carry Whitney a little! 




 At the site! I highly recommend this hike and seeing the construction site! I was tube feeding Whitney in the car!  She fell asleep on the way down while Gramma carried her.


Afterwards, I showered while Whitney slept. Then I bathed Whitney and did our normal routine and she didn't throw up today! yay!  We also went to Thomas's parents house again for Family Home Evening!  Then went to cold stone with them! Yummy!  Ice cream is my weakness, but at least I got a good work out this morning haha!  I know, I know, no excuse!    There was a family there that thought Whitney was so cute.  And even the little girl was all like "She's cute like me!" It was funny! Now my little one is in bed and I need to do fold clothes, maybe...  Anyways, life is good!

Wednesday, February 15, 2012

Valentines Day



LOVE. 
 What does it mean to you?  It's intense. It's exhilarating. It's magical.  And It will occupy your every thought.  It's the definition of charity.  I'm not sure what the origin of Valentines Day is.  Some think it's just a Hallmark Card Scam.  Some think it's Single Awareness Day.  Some might think it's just another day on the calender, nothing special.  Well, while all this may be true, it could be a holiday to give us the opportunity to simply remember to say "I love you." I love writing love notes and thank you cards.  This day is a good excuse to do that.  I don't go out and buy $5 Hallmark cards for everyone that I love.  I do it on the computer on just on some cardstock with left-over decorations.  This year a made some cards for my parents, in-laws, and therapist.  I painted Whitney's hands with sparkly red paint and pressed them onto the paper to sort of make the shape of a heart.  It was adorable.  Of course Whitney was very unwilling.  I just wrote a simle note and my parents and in laws will cherish it.  I hope her therapist will too. 







I think you should always say "I love you" every day.  Falling in love is a powerful thing.  Love between husband and wife. Love between parents and childen.  I believe that love is also a choice.  Once you fall in love and get married,  you must choose to love that person.  You must show that person that you love them.  Maybe they like acts of service, gifts, quality time, physical touch, or words of affirmation.  For us, we love to show each other our love daily.  It may not be as spicy as it was our first couple of years, but it is still wonderful. 


"In Matthew, the Lord said, “Thou shalt love thy neighbor as thyself.” In His mortal life, He demonstrated a perfect kind of love, then said, “A new commandment I give unto you, That ye love one another; as I have loved you, that ye also love one another” (John 13:34; emphasis added). Loving as He loved is a higher form of love than loving “as thyself.” It is a pure love that puts another higher than self. This pure love is the same love that should exist between husbands and wives. In Ephesians 5:25 [Eph. 5:25], the Apostle Paul exhorts, “Husbands, love your wives, [How?] even as Christ also loved the church, and gave himself for it.” How, then, did Christ love the Church? We have a marvelous definition of this love in 1 Corinthians 13:1–8 [1 Cor. 13:1–8] and Moroni 7:44–47 [Moro. 7:44–47]."Agency and Love in Marriage by Elder Lynn Robbins





We also love spending time with our family.  Growing up it was always fun hanging out with our family and extended family.  Although most activities were expensive, a lot of fun can be had for free!  Thomas and I love being parents!  Whitney is just so much fun and we love her so much! 
"We build deep and loving family relationships by doing simple things together, like family dinner and family home evening and by just having fun together. In family relationships love is really spelled t-i-m-e, time. Taking time for each other is the key for harmony at home. We talk with, rather than about, each other. We learn from each other, and we appreciate our differences as well as our commonalities. We establish a divine bond with each other as we approach God together through family prayer, gospel study, and Sunday worship.”
Whitney's hair is getting so long! It's practically down to her diaper!

I love this quote by our prophet!  It's so true and I really hope that our marriage will continue to be amazing!  I absoultely love my husband!  We pray for our marriage and work together as a team!


“The Lord has ordained that we should marry,” said President Gordon B. Hinckley, “that we shall live together in love and peace and harmony. … The time will come when you will fall in love. It will occupy all of your thoughts and be the stuff of which your dreams are made. … You will know no greater happiness than that found in your home. … The truest mark of your success in life will be the quality of your marriage. … This choice [of a companion] will be the most important of all the choices you make in your life.”




 Was running back and forth back and forth!

 And would stop with a smile for a picture

I also really love this quote from "Agency and Love in Marriage" by Lynn Robbins.  (Sorry it's so long but it's really true.)

Many popular songs and films make reference to loving forever or to an everlasting love. For the world, these lyrics are simply poetic; for us, they are genuine expressions of our divine potential. We believe that eternal love, eternal marriage, and eternal families are “central to the Creator’s plan for the eternal destiny of His children.” However, every couple will encounter some struggles on their journey toward this glorious destiny. There are no perfect marriages in the world because there are no perfect people. But our doctrine teaches us how to nurture our marriages toward perfection and how to keep the romance in them along the way. No one need ever “fall out of love.” Falling out of love is a cunning myth which causes many broken hearts and homes.
“The family is falling apart all over the world,” President Hinckley said. “The old ties that bound together father and mother and children are breaking everywhere. We must face this in our own midst. There are too many broken homes among our own. … Can we not do better? Of course we can.”




 Really, out of all those toys, she just wants the Ipod touch (playing hymns by the way)




 Whitney is signing "help", wanting me to get her the Ipod!




 So I'm not really sure what kinda things to do on Valentines Day with kids.  So I didn't get her anything, it's not like she eats candy.  Any ideas for the future for me?  I'm thinking just love notes and heart shaped foods!?  Luckily Gramma got Whitney a really cool drum set! She wasn't sure if she should give it her on her birthday or today!  It had lots of hearts on it so today it was! Whitney loved it!



"Where's Whitney!?"





"There she is!" 


So, I know that once we're on our own in Dental School, I'm going to have to step it up! Big time.  Thomas willing be studing all day long and I'll take care of Whitney by myself.  Of course we also want more children!  So I'll have to be extra "on top of things" when I'm pregnant.  Thomas is amazing and helps me out so much as do my parents.  But I know that love will get us through, and lots of communication!  I hope that I will have lots of good friends like I do here!  It's so important to show your friends that they are loved too!  We are really excited though to start this new journey!


"“Love one another; as I have loved you” (John 13:34). On this simple phrase hangs the success of every marriage and family. In the light of Christ’s love we see our family’s divine potential. We love them with all our heart, soul, and mind. And as we do, our ordinary family is transformed into an extraordinary one."




 XOXOXO

Friday, February 10, 2012

Feeding Tube Awareness Week 2012



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! 

Tuesday, February 7, 2012

SUPER-STAR


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

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.