Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Thursday, October 28, 2010

Giggles!


A lot has happened these past few days! Starting from where I left off...



Last Friday we went to the pulmonologist at Phoenix Children's Hospital. For some odd reason they did not get any background about Whitney from her Pediatrician! The Pulmonologist, Dr. G. had a dietitian/nutritionist come in to evaluate Whitney because she was not gaining much weight. So they got us in (finally!) for a swallow study.
All ready to go! She pulled her headband down! Ha ha!



Aunt Brianna came from Eastern Arizona College in Thatcher!




On Saturday, My Cousin Alanna got married! My husband and I were invited to her Temple sealing. It was absolutely beautiful! I got all teary eyed, remembering when I was sealed to my husband for time and all eternity. Thomas's parents came over to the house to watch Whitney. We are so grateful for that. That night we went to her reception out in Litchfield. That was fun & they had tons of food!








Also Saturday, October 23, Whitney laughed! for the first time ever! it was so beautiful it made me cry! My dad was tickling her legs/thighs and say ticky ticky tooo! Then she let out a tiny little giggle! She makes happy noises and smiles all the time but this was the first time she went and octave higher. She actually did it twice! Only me, dad, Thomas, & Clayton were there.









Sunday was awesome. I love going to church! The primary children are so precious when they sung and talked. Great lessons about the Priesthood and about raising children. Thanks to dad, Thomas & I were both able to go to church. I'll stay home this Sunday. We don't go out trick or treating on Sunday because we try to keep the Sabbath Day Holy. But we will not deny our community of coming to our house for candy.




So anyways...



Monday, we (me, my mom, and Whitney) went to the pediatrician. She seemed to have forgotten some things about Whitney which was not very good in my point of view. Like that she was on a 24 cal diet! She's the one who is suppose to be taking care of that! Whitney weighs 10 pounds 5 ounces which is the 8th percentile. She has been doing worse eating and apparently lost some weight. So sad and nobody could help me try new techniques.



Tuesday, we got to go to the feeding clinic at Phoenix Children's Hospital for Whitney's swallow eval. All she did was listen to her eating. My mom had to feed Whitney because she likes to be rocked and swayed. So the speech pathologist recommended a swallow x-ray and a reflux x-ray. She tells that to DR. G. and now they have to tell that to DR. K (pedi) so that she can write the prescription. Very long process apparently. I feel like so many people are involved and trying to help but yet feel like no one is helping us!



Wednesday was My Birthday! Yes, I will tell you all that I am 24 years old! The day went pretty well, just struggling getting Whitney to eat. I had a little party with my fam and Thomas's fam. We were so glad they came and especially Ikaika (cool name huh?) Thomas's brother. We had pizza, when I was pregnant I hated pizza! The smell the taste! So now the only pizza I will eat is Papa John's BBQ Chicken Bacon (BBQ sauce instead on tomato). We played a game, Jessica came, I opened presents, yay! I still get presents! Thanks everyone! Then of course had some cheesecake and ice cream. Very very fun. Whitney had to stay upstairs because of the crowds.




Me & my baby. My first birthday together! I love my baby & hubby!



AND now Today! Thursday. DR offices finally calling back. The pediatrician wants to see us tomorrow to discuss the feeding clinic results before she will refer us for the x-rays. The physical therapist came and also the speech pathologist! Yay! HUGE thanks to her because she is the only one who gave me advice for how to feed Whitney and so far it is working!!!!!!!!!!!!!!!!! Everyone else says just keep doing what your doing! It's probably medical. But they/ everyone thinks she might have reflux anyway. But THANK YOU Tina!!!!!!!!!!!!!!!!!!!! Mostly though I thanked my Father in Heaven for answering my pray. So far Whitney loves this new technique!!!!!!!!!!!!!!!!! done it twice now and will again at 9pm.

Also.....Whitney laughed again! Twice. I did a funny, low voice and she thought that was pretty funny. I love it!



Tuesday, October 19, 2010

Oldies but Goodies

It took me ALL day to post my first blog and now I'm just going to bore you with some more photos! Ha Ha! Sorry! Reminising about the olden days (4 years ago anyway.
Mindy & Thomas weren't even 'officially' part of the family yet. Tim has not been meet, and there were no babies.

From Left to Right:Dad, Derek, Thomas, Brianna, Mindy, Jessica, Mom, Alicia, Colton, & Clayton







More Pictures!

Beautiful Family Photos!




Note also the white dog :)





My beautiful sister Brianna holding niece Whitney for the first time!





FOUR Generations!! My Grandma B. (My mom's mom), My mom, Me, and Baby Whitney.



Our life lately

Yay, time to blog! don't really have time but I need to! Just a little stressed right now, so you all get to listen/read about it, guess I could just write in my journal for privacy, but that's over rated! People need to know they're not alone! Whether your a CDH Mom/Dad or not, it's all part of parenthood (to which I am a proud member!)So it's been a little while huh? Everyday something to do and when there is not, I'll be sleeping on the couch! Here, Whitney scooted herself off the blanket while she was sleeping on her tummy on the floor!







We went to the cardiologist (heart DR.) last week for a checkup and ultrasound on Whitney's heart. So that was 'fun'. She actually did pretty good considering it took 2 hours! There are 3 things 'wrong'. 1. Atrial Septal Defect,3mm opening, which she should grow out of in 3-5 years, if not then it needs to be fixed. 2. Patent Dufur arterisum, 1mm, it's an opening from the pulmonary artery to the aorta letting to much blood flow. This is present in all babies in utero and closes when the baby cries right after birth. Obviously Whitney's couldn't because she couldn't breath and was intubated. If it that doesn't close then it needs to be to prevent infection. 3. Pulmonary Hypertension, at 50, needs to be at 30 (not sure if it improved, I'll have to call them) therefore Whitney will remain on the Oxygen. He wants us to come back in 3 months. In conclusion, nothing to serious, it's been there the whole time and they are monitoring her heart.I was like, wow, this is new. Whitney was like, uh, this is weird. My mom was like this is interesting, I need a picture! I think it's just a way to monitor heart rate and oxygen saturation.






Getting ready for the ultrasound. She looks nervously at me. He turned on Elmo and she liked it for a while, then wanted to sleep to I turned it off.




We swaddled her in a very unusual way to have her chest exposed but keep her arms down. It worked nicely and Whitney hardly moved or cried. Still looking at her mama.







So last weekend me, my mom, and my mom-inlaw went to Time Out For Women. It's some kind of seminar/conference at the Phx convention Center once a year were lots of women, mostly LDS, get together to hear famous people speak. The topic was Infinite Hope. This was my first time and I loved it! Got to hear from Virgina Pearce (Pres. Hinckley's daughter), Sheri Dew, Marilee Boyack, Brad Wilcox, Mariama and a singing group called Mercy River. They signed books and if I would have known they would then I would have brought mine! And my camera! Owell, next time! It was really really good and fun to be there and hear their messages and be with my moms!


Grandma H. came over to visit Whitney




Bought some cute comfy cozy Pj's. They say Mommy & Me with elephants.




I went to the dentist again the other day. The physical therapist came over and said that Whitney needs to go to the feeding clinic at Phx childrens. I'm really worried about it now. Recently she has been doing worse about eating. So I've been trying all day to contact some lady there, hopefully she'll call me tomorrow.

Happy Birthday to my Dad! Happy Birthday to all October babies! And my Birthday is coming up really soon!

Friday, October 8, 2010

My Princess

It has been a REALLY busy week! Here are some recent pictures I know you all have been dying to see! My baby girl is the cutest ever!

A lot of you have been asking how much longer Whitney will need to be on oxygen for. The pediatrician says that she wants Whitney to go to a normal 20 calorie diet of formula and still gain weight and eat good. Right now she is on 24 cals and it'll decrease by two calories at a time. Then Whitney will no longer need the support of the oxygen. Which, honestly, I can't wait for! It's getting to be annoying with the long tubing and the monitor. But I don't complain because I'm just grateful she's home! So basically another couple of months. She is eating really well but still needs the extra calories because she's in the lower percentile (but still on the charts) and definitely don't want her to lose weight.
She's been home for about 3 weeks & 4 days!








Whitney on her changing pad giving a big sneeze! It's fun to capture moments like this!



Another irresistible moment you just can't pass up!








This is our first General Conference! HAHA! Classic General Conference picture, of course we're not really asleep. (We quit enjoyed all the parts we got to hear!) But we did wear our PJ's all day. The Church of Jesus Christ Latter-Day Saints holds a conference in Utah (broad casted though out the whole world) every April & October. Our Prophet, Thomas S. Monson and his counselors speak to us on various subjects that inspire them. http://www.lds.org/




This week Whitney had her physical therapist work with her on different stretches for her hands and shoulders and neck. I'm glad they come to help us out. It's called AzEIP (Arizona Early Intervention Program) and is for any babies under 3 who are 50% deficient in some area of development.

Whitney also had an eye exam this week. They dilated her eyes with some drops, we waited 20 minutes, then Dr. G. checked them. (His office is in a really fancy building by Arrowhead Hospital and he was a really good Dr.) Whitney's eyes look really good in general, we are so happy because sometimes the ECMO and Oxygen can have a bad effect on baby eyes. She's moderately far-sided though. Babies are born far-sided, so she is a little bit more than usual. The Doc said that she focuses though it very well and should get better with in the year.


When going to these appointments we make sure that she is covered up! We (my mom and me) take Whitney (and the portable oxygen tank and monitor in her car seat ) with the car seat cover over it and make sure no one touches her or even breathes on her and that the Dr.'s and nurses wash their hands well. We just don't expose her to crowds of strangers, but if someone wants to see us that's okay if they or anyone around them is NOT sick.





How can you resist that face!




Mommy and her Princess!






I'm so glad that so many people read Whitney's Blog and share her miraculous story to their family and friends!