Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Friday, September 28, 2012

I Heart Her

I love her shirt! Peter Pan is my favorite.  I've been eying it for a really long time since I've seen it at target.  But those Disney shirts are expensive.  I went to Target the other day (and today) and it was on sale for  like three dollars!  Sweet!  And she is dang cute in it.  Whitney loves to go shopping with me and so far she stays out of trouble. 

Tonight I asked Whitney if she was hungry.  She had been off her feeding pump for the four hours.  She said "eat" and walked towards the pantry and I was so excited she was hungry and wanted to eat.  I thought she'd want a cracker or something.  But she came back to me, turned around, and said "back pack on." Sigh.  So we went upstairs and hooked her up to her feeds and she went to bed.  It just makes me so sad that she doesn't want any real food to eat. Also sad that she knows her back pack feeds her.  I didn't realize that she knew her back pack is what feeds her when she's hungry.  Although Whitney is getting much better about sitting at the table with us for dinner.  She even put the fork to her tongue several times with some sauce on it.  This evening she held a gold fish for like an hour and would occasionally lick it.  Even though she is so hungry, she can't eat.  She's scared to eat.  She doesn't know how to eat.  But that's okay for now because she is growing big and strong and smart on formula, or as she says it "FOR LALA!"   I know one day she will learn how to eat by mouth but I also know it's a really long and slow process.  At least she enjoys brushing her teeth!  Which is a huge deal for a kid with oral aversions! 

She breaks my heart, melts my heart, and she makes my heart full and whole.  She is just so dang cute.   I love my daughter more today than yesterday, but not as much as tomorrow. 

Wednesday, September 26, 2012

Camping in AZ

Yes! I went camping being 32 weeks pregnant!  It was actually way fun and I slept pretty good!  My dad has all the camping gear and spent all day Friday packing.  We left Friday afternoon and drove about 2 1/2 hours north to a spot between Camp Verde and Strawberry.  It was getting dark fast so we set up tents and sleeping bags/ air mattress's and started a fire.  Whitney loved the fire and called it "Happy Cake!"   She associates all candles, cakes, and fires with being Happy Birthday.  That night we cooked our foil dinners and they were delicious.  Then we made smores and hot chocolate! 

We set up Whitney's pack n' play in our tent and put her in warm pj's and let her play mario on the DS. We had to cut a little hole in her new zipper jammies to fit her feeding tube extension through. It's easy and works great because they don't make snap up pj's for this age/size.  I think it was around 1 or 3am, that she woke up crying so I asked her if she wanted to sleep with Momma and Daddy in our bed.  She immediately stood up and wanted out.  I think she was just really cold because she just laid down with us and put the sleeping bag over her and fell asleep. So cute.   I'm surprised she slept threw all my tossing and turning!  We didn't have any problems with her feeding tube or pump all night! We gave her her meds as normal at night and in the morning.  She did throw up in the morning even though we gave her zofran.  She was just upset about getting her clothes on.  She really hates the long sleeves and pants! I think she's just use to being in a t-shirt and diaper so I'll have to work on that with the winter coming up.

We made egg burritos for breakfast.  It's easy to just crack a egg in a bag and fill it with other yummy stuff like ham or bacon bits or peppers or anything else you like/bring.  Cook it in boiling water for a while and it's done.  Although it didn't look very appetizing to me at the time so I went in my tent and ate a pop tart and took a nap.  All the boys went out somewhere to shoot guns (except for Colton).  Mom and Whitney played on the iPad while I was sleeping.  Brianna and Colton played card games.  Then I woke up and we all played card games and Whitney took a nap from like noon to 2pm.  Then boys came back and we packed everything up and headed back home.  I had a lot of fun even though I couldn't go hiking or shooting or anything.  It was Whitney's first time camping and for the most part she loved it and did awesome.  Keawe was also awesome about packing all of our stuff and driving the whole way!   I just love the smells of camping, the dirt, trees, fire, and food!  And hanging out with family is totally fun!


Monday, September 24, 2012

Trip to AZ

 After about 2 months here in Cali, we made a little vacation trip back home to Arizona!  Keawe had a couple days break so that gave us about 3 1/2 days to spend in Az hanging out with family. I'm glad it's only 5 hours away and not any longer!  I packed all day on Wednesday and then Keawe packed up the car after school.  We headed out right after Whitney's nap (bad timing) and she stayed awake the entire drive!  We got there at like 11pm!  She complained for the first couple hours, then we got gas and found her DS video game, and that kept her entertained the rest of the way! She loves to "play" Mario!   It was nice being back home where Whitney spent the past two years (and I spent my whole life). 
We hung out at my sister and bro. in laws house one night.  It was way fun to have the whole family there (except Rhett, sorry) and Jess made amazing "Cafe Rio Pork."  The weekend was spent camping which I will write about in a different blog post (way too many fun pics)! And the Sunday we drove back home!

 Apparently we like to sit on Uncle Clayton!

 And tickle him!

 And squish him!

 And jump on him!

 And just have fun with/beat up on, poor Uncle Clayton!

 Tickle Alyssa!

 I hope they grow up to be friends! Or at least best cousins!

 The kids overtaking the card game!

 So much for the card game! But kids are way more entertaining right!?

 Everyone (cept Rhett) with Mom taking the picture

 Hanging out!

 He loves to entertain the kids!  I think Whitney missed her Uncles!

 Recently, she loves to do perfect somersaults!

 Whitney also loves to play with her belly button and loves to shout BELLY BUTTON!

  Busting out the iPad also draws in all the kids!

 Brad, Derek, and Whitney

 Uncle Derek, Whitney, and Papa


Wednesday, September 19, 2012

Talk about appointments and a cute video

Above is an adorable video of Whitney saying the names of everyone in my family!  We are excited to visit them all this weekend!  Keawe has a two day break from school then starts the fall quarter on Monday!  He is studying hard for his final exam tomorrow.  So we are taking this opportunity to drive the 5 hours back home, because the next time will be around Christmas.

Today we had our appointment with the pediatric surgeon.  Basically to just make sure we are set up with (a good) one and that they have Whitney in their records in case anything were to happen.  It went pretty well!  We waited a while in the waiting room though.  Even though it's a children's hospital, they are also a regular hospital so all the surgeons are in the same clinic.  It felt so weird/different being in that waiting room compared to PCH because there were so many old people and only a couple of kids.  So it was not kid friendly, lots of people coughing and they smelled like smoke, lots in wheelchairs, or fat or super skinny and most in were really old. 

The ped surgeon said she has experience with CDH surgery and ECMO patients,  and she has experience with g-tubes although it's the GI Dr. that replaces them (opposite of Phoenix).  She seemed very nice and knowledgeable. She seems to understand my concerns and such.  She wants a new chest and side view x-ray of Whitney so if I can't find a current one then we'll do that soon.  Whitney only got upset (aka severe anxiety) twice and didn't even throw up! I'm glad she did so well and that I could easily pay attention to the Dr.

Then we went to drop off a prescription in the hospital's out patient pharmacy because it's a close one that does compounds.  Whitney's prevacid is a mixture of the med and water so that it goes easily through her feeding tube.  Parking was terrible! Why they don't have a parking garage is beyond me, if fact the over flow parking is kitty corner across the street!  The hospital is so old looking!  Especially compared to the nice and new, spacious, bright, updated Phoenix Children's Hospital we are so use to!  And like I said earlier, it's not just for kids, so there are a ton of old people there.  Anyways, we go up to the pharmacy and Whitney sees some patients and totally freaks out.  When we got in the tiny pharmacy room she threw up.  They said it would take an hour to fill the script and there was no way I was waiting in that place for that long and no way I was going to try to park there again.  So we finally headed home.  

On the bright side Whitney did have a pretty good day and so did I because I went with some friends to the Relief Society meeting for ice cream and a fun game.  It was a super busy day and I didn't have time to pack but at least everything is washed and clean.  

So last week we went to a WIC appointment to talk with a nutritionist because Whitney has a feeding tube/ has medical problems.  I was really worried that she wouldn't understand why Whitney doesn't eat or would give me unwanted advise.  But as I told her a bit of Whitney's medical history she totally understood everything!  I was very relieved and felt comfortable talking with her.  She knows how babies have an instinct to eat at first but then later it's a learned behavior and that Whit never learned how to eat.  And when she did eat, it was painful for her because of reflux and gag reflex.  Because she was intubated (and suctioned) for so long as an infant.  She understood why I couldn't breast feed or keep up pumping.  Whitney is afraid of food but we are still trying to get her to eat and drink and that it is a super long and slow process that could take years.  Talking with her was very reassuring and she didn't make me feel like I did anything wrong, or that anybody else did anything wrong with her either.  I told her about all the procedures and test done on Whitney to help her insides work and feel better.  So it was a long conversation, while Whitney played happily on the floor with the toys, she said I know what I'm doing and that Whitney will still get the food checks.  I know it's hard for most people to comprehend a child not eating for whatever reason but I try my best to explain.  Every child is different and I know lots of kids (now) who need feeding tubes to survive.  Whitney would starve to death if she did have her feeding tube.  Anyways, it was just nice talking to a stranger who understood my/our battle.  

Which also makes me think about the relationship between a Dr. and the child's parents (aka, me). (This is mostly reflecting on the past). It's a very difficult relationship in many ways.  Sometimes we don't understand why this thing is happening to our child and when the Dr. describes it, it's hard to believe.  You don't really understand the recommendations until you do your own research.  Even then, it's your decision and everything is up to you.  Whether it's about a medication or a test or a surgery, it's a hard choice to know what's best for your child. You may always feel guilty that you didn't do something or should have done it earlier.  Or glad that you didn't do something the Dr. recommended.  A lot of times, it's the parent that has the idea about something that will help their child and they have to push and fight the Dr. about it.  It's also a relationship you never hoped or wanted to have but on the other hand, are so grateful for it.  Just remember to pray always and count your blessings.   

I just love my daughter to pieces and can't get enough of her sweet, fun, and contagious laugh and smile!