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

Saturday, March 19, 2011

How to explain the stuff she's on

It's definitely getting warmer here in Phoenix!  It reached the 90's and it's only mid March!  I think February has perfect weather for us! We like to take Whitney outside as much as possible but lately she's been tethered to her feeding pump pole.  So that is no fun for either of us, being stuck in that room all morning.  But we do have help from family and friends. But only few people know how to work the feeding pump and know how to make her bottles and everything else that this girl needs.  Thomas and I are able to go out on dates.  Two weeks ago was our 4 year anniversary!  We're so old...ha ha!  We went out to eat at Chili's. We're planning to go to Out of Africa one of these Saturday's that we're not busy!  We are also able to go play racquetball every Tuesday!   Yesterday I went quading with my dad and brothers.  That was really fun until my tire popped! We went home early.   We are very grateful and we can't wait to be able to take Whitney to places with us!  We actually to her to our church building last Sunday evening while Thomas and I were getting interviewed for our Temple recommends and she did really good.  Hardly anyone was there but a couple people asked us what she was on pointing to her face.  So I explained about the oxygen and the feeding tube.  I wonder if it would be easier for me to just say was it is before people ask, I mean, I know they are wondering and may feel awkward asking.  But they want to know, so they do ask and of course it's not offensive to me at all.  I'm obviously use to it but no one else is (just never thought about it before this). I'm sure every one at church already know about it but they can ask if they want.  I think in public I won't say anything unless people stare. We're perfectly normal when we go to Dr. offices of course! Lol. Because everyone there is either having feeding or breathing or GI problems! 

Father and Daughter

Mother and Daughter

Our favorite place to take pictures is on the couch.  Every morning we I get her up and dressed, I take her out and set her on the couch and take a few pictures of her.  I love this girl so much!  I love being a mother!
Chillin' on the couch playing with my favorite toy
  This past week has been busy and relaxed!  My family went to Universal Studios for Spring Break so I was home alone with the baby and Grandma.  We survived!  Thomas came home from work to help out instead of going to the library to study all night so that was really nice!  When they got back every day felt like a Saturday!  This next week is completely booked with Dr. appointments!  Five in all, including speech and physical therapy, GI, synagis shot and pediatrician.  I have a feeling Whitney will not eat very well this week either!  I'm really glad she is getting the synagis shot to prevent RSV, especially since we will be taking her to church in April.  I don't think she is ready for immunization shots though because she had a really rough time with them back in Jan.  We can definitely wait till she's older and stronger to handle them.
And just a heads up... we did get the Cardiac Cath scheduled for April 6th.  I really hope this fixes the problem and that Whitney will do really good with it and that I can handle it too.

Whitney's wearing her new sunglasses here, they fit really well and should last all summer except that she was crying the whole time they were on her!  Hopefully she'll get use to them!

Sporting my cool shades
  Also we have a date set to do her baby blessing at church. It's on April 17th and everyone can come!  It's at the Acoma Building on 79th Ave and Acoma (across from Centennial High School) at 9AM.  This is not a baptism or christening, it's just an opportunity to give her a name and a blessing in church.  Usually we bless them as newborns but because of Whitney's situation she was unable to do that.  So she is pretty big and most likely will cry but that's okay!  I'm just super excited to have her blessed!  And a friend of mine, Abbey, is making her blessing dress!  Yay!  We picked out the fabric together, it will be so cute and original! It's fun to finally buy her church dresses also!   Whitney is getting more mobile everyday. She can crawl and reach or anything she wants but mostly she wants to stand up and lean on the couch or me.  She can actually pull her self up with some assistants!  If she's crying sitting down, I just pull her to standing and she's so happy, spitting and babbling! Whitney is about 8 months old now! 

Happy St. Patrick's Day!

1 comment:

  1. We will for sure be there! Supporting you guys!! Im so excited for you!! She has shown everyone how strong she is and what a will to be on this earth.with you guys! {hugs} and love!!