Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Thursday, February 24, 2011

NG Tube, Oxygen, Shots, Rball



Hey all! It's been a while so I suppose I'll do a quick update!  Thomas was suppose to put in a video in the mean time...but of course he didn't...

well in his defense,  he is studing a lot for the DAT.  Sometimes he doesn't get home till 10PM. 

"I'm so glad when Daddy comes home!"



The valentines picture of Whitney shows her tubeless... well she really isn't.  That morning she threw up the NG Tube (it came out her mouth!) So I pulled it out and took off all the tape and the oxygen nasal cannula.  Bathed her and then took a million pictures.  Her poor checks were so red and raw...try having tape on your face for 7 months straight!  So when I put everything back on and in, with the help of my mom and husband, I only taped on the NG Tube and not the cannula.  I just tuck it behind her ears and tighten it in the back.  It comes off and I'm always ajusting it.  It's only been off for 2 weeks now and her face is still needing to heal. 

We are still contsantly trying new things to get Whitney to eat better.  She's taking less than half of her daily intake by bottle.  We need to get her up to ALL by bottle!  Only time will tell though.  Recently I have been swaddling her while drinking and so far she seems to like that.  It helps her calm, relax, and focus on eating.  Whitney doesn't eat well in the mornings so I have to put it through the tube which always makes her throw up.  Then I rinse her off in the shower.  We play together, then she sleeps. But of course if she has an appointment is ruins the whole days routine. 



Trying to jump out of my boppy pillow

Whitney gained some weight and is doing okay there.  She weighs 13 lbs 11oz.  She got her synagis shots today and also Grandma H. came over to visit!  I decided to take her to different speech therapist opposed to the one at Phoenix Children's. I'm not sure what her purpose is because she just tells me to keep doing what I'm doing!  The new one does some other "touchy" therapist as I like to call it.  You know the emotional stuff vs. medicine.  I hope I don't have to believe in it for it to work, but I figure it's worth a shot. 







"I Love my Gramma P."

"I love my Grandma H."


Not much new to say and I suppose that's good, except I wish she was doing better at eating and breathing.  Other than all that, Whitney is super happy and so sweet.  She does this whine thing and it's so funny.  Whitney is always smacking her lips together making a 'pop' noise.  She also loves to spit and blow bubbles!  Whitney is rolling around every where now.  It's so fun but makes me think like every other mother...She's growing up too fast!  I' worried that the oxygen tubing will get caught around her neck or something.  Whitney also rolls around in her bed!  I love watching her reach and roll to her toys.  I love playing with her and making her laugh, sweetest laugh ever. 

I can't wait to take her to church with us, finally.  Only one more month!  I think I will take her even though she'll probably still be on oxygen and ng tube. Then people will think I'm a real mom! Haha.  I won't let anyone hold her though, unless they are dying to then they can and they'll just wash their hands first.  It should definitely be interesting to say the least.


Daddy's little lady

Racquetball is so fun!  I love that Thomas is playing too!  There's only one other girl in the class and she doesn't talk to me...  Last week I asked to really good player to be my partner! Ha ha (he was the only one left)  Thomas got paired with coach.  If your team wins you move up a court and if you lose you move down.  We won every game!  When we played Thomas and the coach it was so fun. Coach thought I was beating Thomas up with my serves!  I love getting out and playing racquetball!

Monday, February 14, 2011

Happy Valentine's Day!


Whitney's first Valentine's Day!


Saturday, February 12, 2011

Thanks!

Thank you so much for all the comments and support!  I love you all too! 

The Modified Barium Swallow X-ray (MBS) went okay, well...better than last time anyway.  We went to PCH for the test, they say no one under 12 can come in the hospital because of RSV and I'm like great...I hate taking her places because of that sickness going around. Luckily or thankfully I have not gotten it and neither has my family.  So we get back to the Radiology part and we get all ready for the test.  Whitney was hungry when we put her in the chair and they lined up the x-ray machine.  Me and my mom had to wear the big lead aprons.  She took her bottle of barium pretty good...Yuck! She only swallowed a few time though and started screaming again.  But they had enough info. and decided to decrease the thickness of her formula.  It was nectar thickness and it's now safe to do a thick thickness...it's only a little less thick but still thick....They say now she'll get some extra calories because the Goat's milk formula is less thick now. 

The next day we went to the GI dr. M. and he's says the same ol thing...She's not eating well because of the pulmonary hypertension and approves getting the cardiac cath done.  Keep her on the prevacid so her reflux doesn't cause damage to the esophagus.  And that he cannot reccommend our Raw Goat's Milk Formula because he dosen't really know what is it.  Whitney didn't gain any weight but he said that's normal.  She's still under weight and he won't ween her from the NG Tube until she's atleast in the 10th percentile.  Right now she's in the 4th so she's about 2 pounds underweight, which is a big deal for babies. (it compares to20 lbs for an adult!)  The more she grows, the healthier and stronger she'll be.


Whitney K. wearing the headband I made! She loves to look in the mirrior!

Our cardiologist is amazing.  We wanted to do some natural medicine to see if that would help but I only wanted to do it if DR. P. said it was okay.  He said that he would do some research (instead of just say no).  So me and my mom gave him some info to help.  After a while, he called me personally and told me all about his research and decided that he didn't want Whitney to be on it.  Basically because it is not meant for babies.  I was crying on the phone because I'm so scared to put my baby in the hospital again for the cardiac cath surgery.  Dr. P. said he could do another echo first and that the surgery can wait another month. 


Whitney is teething!  You can't see any teeth in this pic but one is trying to poke through!


Sunday, February 6, 2011

Another MBS tomorrow

Hey out there to all my friends and family!  It's been a little while so I'll give you some more recent pictures to love and some updates!  I love Whitney so so much! 
Today was a very good day. Grandpa P. stayed home from church to take care of Whitney. I love Sundays and Sundae's!  Ha Ha!  Anyways!

I have not yet recieved the call about getting the cardiac cath done.  I'm in no hurry though, frankly I'm scared to death of it and really hope she doesn't still need it.



Thomas: "She's thinking about eating!"



But she didn't want to so this is him tube feeding her.  Whitney and Clayton are doing bunny ears!
Thomas stayed home from church and was dying to dress her in this green out fit to match his green shirt.  Personally...I hate it!  Ha Ha! I've been begging him to throw that shirt away! But it was cute! So adorable I had to put it on the blog for all to see!




Perfect fit! 




We've all been super busy with appointments like cardiologist, physical therapy, speech/feeding therapy, and the synagis shot. Now they want to add an occupational therapist.  Whitney's been doing pretty good on her schedule of eating 100 mL's (about 3oz) 5x a day and then a continuous night drip of 300mL's over 10 hours (that's 1 oz an hour).  Plus she's still on prevacid.  We go to the GI this week so we'll see what he says.  Our personal goal for Whitney is to be tube free by June so we can go to a family reunion in Idaho! 




My little model!  I'm sorry but she is gorgeous! 




Super long hair!  My Aunt and Uncle from Idaho came here this weekend to hang out with us before going a beet seminar in tuscon, (so cool), they are farmers!  They said my cousin (Angie) loves her long hair! 



I put it up in two clips, so cute, her neck gets sweaty sometimes.




Tomorrow we go in for a modified barium swallow study xray. boo. My poor princess, last time was terrible, I"m sure this will be too, but she may take the bottle better.  These tests and appointments always throw us off schedule (feeding and napping). They also wear me out so we nap together in the afternoons.
I'm thinking she should be on the front page of American Baby!





Skyping with my brother and sister in law in Utah.  Grandpa P. is tickling Whitney.  Love seeing them and their son Brad.  I'm so excited for another little neice or nephew! 
I'm praying really hard for my baby, that she will get better and eat better.



 I love hearing from everyone!  Don't be shy to write a comment!  I love getting feedback and advice. I'm very open to everyone's opinion! Let me kow if you love us an love reading the blog!