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Monday, January 24, 2011

Whitney and family

So now everyone knows about the raw goat's milk formula, she has been doing pretty good on it but not gaining much weight yet.  Whitney weighed 12lbs 13oz today and last Friday, but on different scales so that's not always accurate but it does mean she not gaining much.  We've been having to tube feed her again since she got some shots on Friday and isn't taking the bottle very well.  So we're back to that.  I put the NG tube in Friday night to help get the calories she needs to grow.  I'm putting the Raw Goat's Milk Formula though the tube too.

This blog thing is weird and all the pictures are in the wrong order but I guess I'll start from the most recent to the latter because I don't want to reverse it all.

Thomas got the Bible and Triple combination (Book of Mormon, Doctrine and Covenants, and Pearl of Great Price)  in Spanish! With his name on them!



He also got the Hawaiian Bible (written in Hawaiian obviously)!  with his name on it, it says T. Keaweiwi Montgomery





Thomas got a tie with Whitneys picture all over it!  It looks awesome!  I got it from Walgreens.com and cost about 30$ Everyone at church loved it! (I posted the pic on the tie below)






Piggy back ride!!





We finally got Colton to hold Whitney.  Well we just set her on his lap  while he was watching t.v. haha!





Whitney finally got to suck on her toes!




Classic mirror picture!!







Mommy's Princess!





This is the day I took out the NG tube because she was doing so good and hadn't used it in a week, for food or medicines.  So I took all the tape off her face too including the nasal cannula.  Her poor cheeks are always red.  I left everything off for as long as I could or she she could.  I put the oximeter on her to make sure her oxygen levels didn't de-saturate. Whitney feel right to sleep after her bath and  About an hour later the oximeter started beeping! She de-sated so low.  So I immediately put the oxygen back on her and she went right up to the 100% again.  Guess she's not ready to be off oxygen yet! But she sure is pretty!





Daddy makes me smile!





This is Thomas's idea of playing with her.  I tell him to watch her for a minute so he gets out ALL of her toys and leaves!  Ha ha!  Well he just went to get on his computer but still.  Humm...







Whitney on Clayton on his birthday! How cute!  She of  course kept pulling his hair and distracting him from the all important video game!





I love Daddy!  This is the picture I put on Thomas's tie.  I took about 70 pics and looked through all of them to decided on a good one! 





Today we went to the Cardiologist, oh and when we (me, mom, and whitney) were in the elevator in the parking garage and going down from the 3rd floor it stopped at the 2nd floor and we saw our friends whom came over the other day!  How crazy is that, or was it fate?  My friend flew in from Alabama to be with her nephew and family while he is in the hospital.  So she came by to visit and reminse and got to see Whitney.  I'm praying her 7 year old nephew will recover well from his brain surgery. 

Anyway so, they do the echocardiogram (ultrasound of the heart). Whitney did super!  She was quiet until she fell asleep and it takes more than thirty minutes to do!  It was cold and we tried to put her blanket on her legs but she kicked it off, we tired again when she was sleeping and she still kicks it off! Ha ha! 
Then Dr. P. (whom we love) talked to us.  I figure I'll tell you all now so you don't worry when it happens.  He says he talked to the other Dr.'s and they agree the cardiac cathater is the best thing to do, instead of the MRI or CAT Scan.  If they did one of those xrays they might still have to do the cardiac cath so it's best just to do one.  Her heart pressures are still high and he's not sure why so he needs to get in there and see (this is not heart surgery).  He wants to do it some time in the next month.  They'll call me and schedule it to be done at St. Joe's.  Basically they have to put her to sleep and use anesthesia and intubate her!  Sad and scary!  But he's been mentioning it for a while now and it's the best thing to help Whitney.  This test will show what or why she has high blood pressure, they think the artery to the left lung is small or kinked or streached because of her anatomy issues at birth.  So they may find that the oxygen is still the best or maybe medications or they might beable to fix the problem!   Dr. P. says she'll only be in the hospital over night to make sure she does okay.  I'll definately let you know when all this will happen.  Pray always!




4 comments:

  1. I've been thinking about you guys so much lately and really want to come visit! Next week we have a few appointments but Matthew will be home so I can come alone! I'm so needing some baby girl therapy!

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  2. Oh ya, and the daddy laying the baby down with all her toys and going to the computer or video game....that's a man thing. Thats exactly what my hubby does! lol

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  3. Hi there! I just came across your blog...Whitney is BEAUTIFUL! My son, Jaime was also born with RCDH. He was never on ECMO, but he was a preemie and is also a hemophiliac...ECMO would have been very risky on a hemophiliac. He was on the oscillating vent twice, and he, too came home with an NG and O2. It's amazing how far these little miracles have come!
    The irony of your latest post is that Jaime, too has to go for his first heart cath. His echo was fine, but he has chronic respiratory stuff going on, so they want to make sure the heart isn't affected in some way. (I'll tell you that even though Jaime is 21 months old now and has had two repair surgeries, PE tubes and a few bronchial scopes, sending him to the OR again and for that scares the heck out of me, too!)
    Anyway, I just wanted to introduce us and tell you what an amazing job you're doing with your little one!
    Take care,
    Sheryl

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  4. I have been following Whitney's story for some time now! It was linked from another CDH blog I have been reading.

    I just have a couple of quick suggestions to help her eating- I hope you don't mind, but I have been down this road. Just some things worth thinking about...

    I did an NG tube wean with my 7 month old LCDH/ECMO survivor since he was "kind of" an eater, but wouldn't do it all himself. It required lots of journaling, keeping track of how much he ate by bottle, how much I had to put through his tube, help from an OT, support from his GI doctor and general practioner, and adding the medicine Cyproheptadine(generic)or Periactin (name brand). It is actually an antihistime, but can be used as an appetite stimulant! And boy does it work, if you use it at the right time during a tube wean. It was a tough few weeks, but it worked and at the end he was a 100% oral eater and still is at 20 months! I got lots of support from Sofia Miller's CDH website (you can Google it). She did a similar tube wean and it is very well documented on her website if you go back a few years. Lots of reading, but it is worth it. Getting these kids to be great eaters IS possible! It is just getting that HUNGER mechanism to kick in. It's hard because NG tube fed babies don't feel hungry too ofen cause we are always supplementing them!!

    And one more thing, my little one is STILL on Prevacid and it works great to control his reflux, which if it isn't under control, he doesn't eat as well :(

    Hope her cardiac cath goes well...we will be praying for you that they find an answer!

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