Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

Daisypath Anniversary tickers

Daisypath - Personal pictureDaisypath Anniversary tickers

Lilypie Second Birthday tickers

Lilypie - Personal pictureLilypie Second Birthday tickers

Lilypie Pregnancy tickers

Lilypie Pregnancy tickers

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!




5 comments:

  1. Love you guys! AND love Skyping with you. Let us know how your appointments go this week and we will of course let you know on Thursday how ours goes.

    ReplyDelete
  2. I just recently found your blog. I love reading your blog. Whitney is adorable! Seeing all the things you guys have to go through with her makes me realize how very lucky. Liam got diagnosed with Juvenile Arthritis when he was about 14 months and I was really struggling with it. When we brought a baby into our family I never dreamed I would be dealing with stuff like this, but it's what we've been dealt. I love my little boy to death and am thankful for our hurdle and it's nice to see how wonderfully other people handle their challenges as well. You really make me realize that I've got it easy. Good luck with everything and keep up the posts!

    ReplyDelete
  3. I LOVE your blog and all the adorable pictures of your girl. She is always in our thoughts in prayers, well you all are, but you know what I mean;) Is she still doing the goats milk? Hugs.

    ReplyDelete
  4. Hey Alicia U do such a wonderful blog Love the Pics:) We sure hope and pray Whitneys test go well and you get great knews! I cant believe all that hair wow! You have alot of hair too so she takes after you in that respect:). Love You guys Hang in! Aunt Wendy

    ReplyDelete
  5. Hi Alicia. I just found your blog. Beautiful blog for such a beautiful little girl!! My grandson was RCDH with liver up. We just celebrated his 2nd birthday and he is TUBE FREE and such a busy little boy! Their blog address is thetuleys.blogspot.com
    I am looking forward to following Whitney's wonderful story. Every time a CDH baby's story is told it informs and encourages families who have recently received this tough news! Praying for good results from the test.
    Jacob's Gramma

    ReplyDelete