Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

Daisypath Anniversary tickers

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Lilypie Second Birthday tickers

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Lilypie Pregnancy tickers

Lilypie Pregnancy tickers

Tuesday, April 26, 2011

Picnics

Whitney's 1st Picnic April 2011





Picnic in the backyard with the dog Xanthia




Picnic with Daddy's across the street from his work



We removed Whitney's NG tube to replace it and have it out for her baby blessing and to see how she did without it.  Now we are getting ready to put it back in, so I bathed her and took everything off her face.
Practicing being a doctor.  


After the tube and oxygen are back in place.  Little did we know that after my perfect taping job, Whitney would throw it up the next day!


I went to the Dentist (my dad) to get my teeth cleaned!  Whitney came to show off to all of my old co-workers.  Sometimes I miss being a dental assistant.




I put Whitney's hair in a half pony tail and stuck it straight up to see how it would dry.



It dried awesomely fluffy!




We finally got our second opinion about getting the cardiac cath done.  We went to Phx Children's and saw Dr. G. ( the husband of the pediatric surgeon)!  They did an echo and his opinion was basically the same as our cardiologist, Dr. P.  There are numerous reasons why  a cardiac cath would be beneficial:  get better pictures with the dye, know what the pressures in her heart really are, balloon open her arteries, close the ASD and PDA,  and determine if the oxygen or the medicine would help better.  The Dr. said that he would trust the other dr. to do it on his kids or that he would be happy to do it.  So I'd prefer our original Dr.'s partner to do it.  So it is scheduled for May 4th.  I really want her off the oxygen so I can take her to the beach in June and to the family reunion.  It's fine with me if she still need the feeding tube but she is doing pretty good with solids lately. 

We usually do our weight checks today but the office said that they are too busy so we'll find out tomorrow!  Hopefully she gained weight, last week she weighed the exact same as the previous week which was 15 lbs 2 oz.  She is really mobile, loves to crawl and cruise and burning more calories!  She hardly takes a nap these days!  Yesterday, Whitney was crawling around down stairs and went out of the family room towards the front door.  Her tube didn't reach so I just unhooked her (I want her to be free and explore!)  but not for too long.  She saw the stairs to her left and went for them!  She pulled her self up and tried to get to the first step. I told mom to get the cameras and Thomas came too.  So mom had the video camera and I had the digial camera and Thomas was spotting Whitney!  That girl climbed every step and there's a lot!  I was so surprised!  Whitney is amazing!

Thursday, April 21, 2011

Whitney's Baby Blessing

I took over 100 pictures of Whitney's baby blessing so I wanted to share a few! 

As members of the Church of Jesus Christ of Latter-day Saints,  we are taught to attend church every Sunday and participate in all 3 meetings.   It was a normal Sunday, April 17, 2011.  We woke up a little earlier than usual to get ready for church.  I got my new dress on and did my make up and hair.  Thomas also got dressed in his white shirt and wore a pink tie just for Whitney.  Dad did not make the delicious oatmeal that he usually makes because we were going to be eating a big family brunch after church.  We tried to feed Whitney that morning because I took out her NG tube the night before to give her a bath and was going to replace it after the blessing.  She drank about 2 oz of the Raw Goat's Milk Formula that I make.  That amount was pretty good for her being a wake, but not good because she should have been hungry enough for at least 4 or 5 oz, but Whitney will only take that much when she is asleep while eating. 

I put a white undershirt on Whitney and some cute light pink undies over her size 2 diaper.  I carefully put the amazing dress carefully over her head as not to ruin her hair.  My friend Abbey offered to make the dress because we were "complaining" about how expensive white blessing dresses cost!  This dress turned out way better than any thing I could have bought plus it was specially made for Whitney.  Abbey and I picked out the fabric at Joanne's craft store a month  before hand.  She also made 2 flowers out of the fabric and attached pink tulle on the back and a pearl in the middle.  I did Whitney's hair in a half pony tail and clipped the flower on top.  Then I put her adorable shoes on her feet, hand sewn by Mindy, my sister in law.  They were white with a pink bow on top that matched the dress perfectly.  Also good that they were custom made because Whitney's feet are too big for a size one shoe and way to small for a size two! 

Thomas then carefully laid baby Whitney, almost 9 months old now, into her red car seat.  Trying not to wrinkle the dress when tightening the buckles.  We hooked her up to the little portable oxygen tank.  Grabbed the diaper bag filled with no noise toys and books, blanket, diapers, wipes, extra pacifer, snacks, face tape and extra oxygen tube, AND my stuff too (keys, wallet, phone, camera, water bottle).  We were only 5 minutes early but we were trying to be 20 mins early!   Whitney fell asleep on the short drive to the LDS church building

I was really nervous as Church started, feeling like I was the one giving a talk or something!  After all of the opening annoucements and prayer and hymn it was time to give Whitney her long awaited baby blessing.  Thomas got her up and my dad and Thomas's step dad (whom he's sealed to) and also the Bishop was in the small circle of Priesthood holders. Normally all of the priesthood holder relatives and close friends can help but we didn't want to over whelm Whitney more.  My brother Colton held the microphone so that Thomas could hold Whitney.  He gave her a name in the church and a wonderful blessing.  Whitney has received many priesthood blessing in her time, mostly of healing.  This was one to bless her life and future of being a member of the Church of Jesus Christ of Latter-day Saints.

I was so happy to see all of my family there and  few friends to support us. A lot of my friends were missing though because they were sick or something.  And I'm sorry to say that neither one of Thomas's brother's came. I was very sad about that.  My whole extended family on both sides are members with only a few cousins and an Aunt that have fallen away from the true church.  So I've never had any problems with that, so it is difficult for me not having Whitney's uncles there.  I'm just not sure how to handle it.

Whitney did so well during her blessing, only makeing a few noises!  The rest of the meeting was really great, talking about service.  Whitney did so well during church and loved to look at every one behind her smiling and making her giggle. She loves to eat some snacks like puffs in banana or cheese flavor and she loves yogurt melts too.   We only stayed for sacrament meeting because of all the family we had visiting.  We went back to my parents house (were we live), for an awesome family brunch. Every one helped out with the food and I took pictures of everyone with Whitney.  Only my Dad's side of the family live here in AZ and they all live fairly close!  Plus there was about 50 people there!  Also of course Thomas's parents and sister came over.  Whitney actually did really well with all of these people around her!  I eventually laid her down for a nap and soon after they dispursed. 

















Tuesday, April 5, 2011

Cancelled!

Or postponed till further notice. So I get a call today around 1:30 from St. Joe's cardio scheduling people and the lady said they have to cancel Whitney's cardiac cath appt for 8AM tomorrow (Wednesday)!  I was like "Your joking right!" (very disappointingly) and she said no I wouldn't joke.  "Oh My Gosh are you serious!?" Then she said she would call me back to reschedule it and to talk to Dr. P. So we hung up.  Then, just to make sure, I called the office again to see if there was any other Dr. or time that day to do it, and they said no!  So I let my husband and mom know about the cancellation.  I was just so ready to get this done and over with, it has been stressing me out for months!  We were prepared physically and more importantly emotionally.  I do understand that apparently they had an emergency but they could at least just move our time up to a different spot, but no. Now we can't do it till May!   Then I decided this would be the perfect time for a second opinion like every one told me to get!  Whitney's pediatric surgeon said her husband is a cardiologist and could do it.  I called PCH and they were really nice and got me in for later this month.  So I look forward to that!  Then I thought, well I have been praying and pondering all month if this is the right thing to do for her.  It's really scary right now but it would help her in the long run.  So I figured this (cancelling it) was the answer to my prayers and maybe Whitney won't even need the procedure!  God does answer prayers!

Pig tails!

We lowered her crib and then she pulls herself up!



It had been quit a while since we replaced Whitney's NG tube (the yellow one). It was getting old so I took it out and took off all the tape, gave her a bath, took a million pictures, and then put a new one back in.  Love her 'normal' look! It's funny how when we look at other people's pictures of their kids we think aww they are sure cute, but when we look at our own... our hearts just melt!  I am right, all you mothers out there!?  Whitney will be tube free some day but not anytime soon. 


In other news, I think that Whitney is the most beautiful and precious baby ever!  She is truly a daughter of God and I am so blessed to be trusted to take care of her.  She is so fun! I love being her mommy and hanging out with her all day!  This is the life! She is crawling on all fours now and can get any where she wants!  My whole family loves her and love playing with her and making her laugh!    Here is a sneak peek at what Whitney will be wearing on her blessing day.  My sister in law who lives in Utah made these special for Whitney!  They fit perfectly and also match the dress!  Thanks Mindy!  We have her dress and it is adorable!  Thanks Abbey!  Should I post a picture of Whitney's blessing dress or keep a surprise for the big day?