Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Wednesday, September 28, 2011

FUN


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.  



















Saturday, September 24, 2011

Her CDH story video.



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

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).










Tuesday, September 13, 2011

Remembering

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!

Friday, September 9, 2011

Keeping Whitney Well

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