Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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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 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!

Wednesday, January 19, 2011

Goats Milk Formula

We have been doing a ton of research lately about the benefits of raw goats milk for babies.  My mom had many resources that helped us get started.  One lady said to first try the goats milk before anything else, I was very skeptical though. After so many positive responses about it we looked up different formulas.  Of course the nutritionist said never to use raw goats milk but everyone else (Not Dr.'s) said that it's the best and to make sure to get it from a good farm.  So after 2 weeks of Whitney on the Similac Alimentum, I made the raw goat's milk formula.  After a day or two she stopped throwing up (she's been doing since she got the NG Tube back in early Dec.) and she stopped having diarrhea.  She seems so much happier now!  She actually likes to take the bottle!  We also stopped giving her the Prevacid and Bethanechol!  So the other day I took out the NG Tube!  Dr. H. said she might be allergic to the other milk and all the additive in commercial formula.  I mean have you looked at that can!  It's crazy!  I know she's been drinking it since she could take food but still.  I love knowing exactly what my baby is eating! 

Raw Goat's Milk
Organic Rice Milk
Wholesome  Organic Black Strap Molasses
Nutritional Kal Yeast Flakes
Nature's Way Primadophilus Children's
Nature's Way EfaGold Flax Seed Oil
Adrenal Plus  
Tummy Glycerite

It comes to about 23 calories per ounce and is so nutritious!  I also add Simply Thick to make it a little thick so it's easier for Whitney to drink. We will also be giving her a multivitamin from Dr. Christopher's website (recommended by a fellow Goat's milk/healthy friend). 

In other news, Thomas is still studying hard for the DAT and I'm busy with baby stuff.  Thomas's 26th birthday is this week!  We celebrated on Sunday at his parents house, but I couldn't find my camera.  I made Thomas his favorite strawberry cake and decorated so lovely!  We brought Whitney with us and my family!  Had some Loco Moco's! So fun!
 Also last Saturday I went quading with my dad and brothers!  It was the first time in a long time and we had so much fun!  After that me and my dad went to the SuperCross at Chase Field!  That was so awesome!  Close races!  Tons of crashes!  And even a fight!  I didn't have my camera for any of that either! By the way, my camera WAS in my purse the whole time!  So mad!  It was in the zipper part that I never look in. 

For all of you Oakwood Ward Member's out there... we are giving talks this week!  So it's totally O.K. if you suddenly become sick or go on vacation because I'm am so so nervous!! AHHHHH! 
Thomas's mom will be watching Whitney because also Colton is playing the piano so mom and dad want to come to church.  Again, AHHH!

Wednesday, January 12, 2011

Totally Gained Weight!

Whitney in her Hawaiian shirt from her great grandparents in Hawaii.  Guess what honu means!  I love that her pants match her blanket! She's camouflaged!  I put on the shirt that goes with the pants (from Aunt Jessica)  but then she threw up on it. 

We put Whitney at the table to eat with us!  She doesn't have food but she practices chewing on her spoons.  She drops all the spoons on the floor!  She loves 'eating' with the family, they always make her smile!  It's a hassle getting her down stairs now that she's attached to that pole for her feedings.  But it's definitely good to get out of the little apartment.

Whitney with a pony tail!  I love this outfit from her grandparents in Hawaii! 

She's doing pretty darn good at sitting up all by her self!  Whitney is so happy and loves to play and laugh and then take a nap!

Whitney's leaning on the couch playing with her music toy, she loves it!  I love this out fit too! 

We went to Dr. H.  today.  He's new, and does natural health care alternatives.  So Dr. H. did some kind of test that said Whitney has allergies.  And that the commercial formula's weren't good for her but the goat's milk is.  He said a whole bunch of other stuff that sounded good so we might be seeing him more often.  Most of it I had no idea what he was saying (I'm not really all that in to it and I'm use to the medical perspective)  but I'm willing to think out side the box, any thing to help Whitney.  Then we went to the G.I.'s office just to get Whitney weighed and she was 12 lbs. 11oz.  Wow! She gained 10 oz in 7 days, that's good but might be too much! 

Wednesday, January 5, 2011

Plans about gaining more weight

The other day we went to the G I, dr. M, to evaluate Whitney's feedings and growth. She weighed in at 12lbs 1oz. I was hoping it was more like 12lbs and 4 or 5 oz because she is suppose to gain an ounce a day and it's been five days since she's been weighed last. She didn't throw up or any thing so I'm not sure why she didn't gain much weight. DR. M said it's because of her CDH and having reflux. So his plan is to keep doing (put her back on) the prevacid and the bethanechol meds. Put her on a new formula called Similac Alimentum, it's hypoallergenic and pre digested. And of course it has to cost double the amount of regular formula! Also he wants to increase the amount of food per a day and stay on the continuous drip. He ordered another Modified Barium Swallow xray and wants her weighed once a week and re evaluate things and to be seen again in a month. They might need to increase the calories, too. If Whitney doesn't gain enough weight by then (a month) then he's talking about doing something called an endoscopey (stick a camera down her mouth) to see the esphogus and make sure it's working and if anything else is visibly wrong. Darn! I pray she will eat better and gain weight! And if something is wrong then she may need surgery to repair it. Sad day.

Sitting up by her self, hanging on to her play mat!

Right before she lost her balance and fell over.

Would you look at that hair! It's so long and goregous!

Grandma loves me! It's from Grandma P. but I know all 3 love her!

Trying to pull of her socks! She does that a lot!

Found her favorite toy!

All I need are hugs, kisses, and Grandma. So true!

Fun stuff!
If you didn't noticed, the NG tube use to be in her right nostril and now it is in her left one! I had to pull it out on Sunday the 2nd morning before church. I was re-taping her face and it came out a little so I pushed it back in and when I checked for placement I didn't get any stomach juice in the syringe. Darn! So I gave her a little break and put it back in Sunday night with the help of my mom and hubby holding her. She didn't take much by the bottle when it was out so she's not ready to be with out it yet but I' m really hoping only a couple more months. Slowly but surely.

Thomas made me a quesadilla with pork, olives, peperoni, and cheese! YUM!

One day she will be free of the oxygen and NG tube. Here's a sneak peek of what Whitney really looks like! But for now she needs them to be healthy and I'm perfectly okay with it! Every day I think about what a miracle she is and how lucky I am to have her.

Thank you to every one who has supported us and prayed for us. One lady said that I was amazing too! THanks!

"I love you more today than yesterday....

But not as much as tomorrow!
I don't remember what day it was I didn't notice what time it was All I know in fact, I fell in love with you And if all my dreams come true I'll be spending time with you
Ohh, I love you move today than yesterday but not as much as tomorrow I love you more today than yesterday But darlin not as much as tomorrow"
~Diana Ross~

Hey there all my friends and family! Hope all is well with you and yours! Here is another bunch of pictures of baby Whitney to keep you smiling!!! Enjoy!

Standing up so big and tall!!

I made these hair bows! With the help of a friend from church.

Playing with Daddy's hair!

Chewing on my rattle!!

Playing in the rain!!

Chewing on my slippers! Thanks Aunt Mindy!

Sucking on my fave toys!!

Sucking on my fave book!!