Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Saturday, February 12, 2011


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'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!

1 comment:

  1. I had to do the MBS a few wks ago and that stuff is terrible!! I feel for her! And you. Im glad you love your dr so much, thats important. She and you guys are always in our thoughts and prayers :) Hopefully we can see each other this week!!