Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Tuesday, October 19, 2010

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!


  1. I've been thinking of you and was happy to see an update! Whitney is the cutest little thing! I love the hair! Don't stress too much about the eating - - she is bound to have ups and downs! Charlie still has ups and downs and he is 20 months! If you stress and worry, she will pick up on that it wont be good for either of you! She knows what she needs! Slow and steady! Take care!

    Much love and prayers,
    Patty D'Angelo
    mom to Charlie, LCDH survivor, 2/4/09

  2. Yeah! Thx, that is true though! okay, slow and steady. Thanks again!

  3. Hi Alicia! I jumped on your blog as soon as I got your email! :-) OHMIGOSH I can't believe how big Ocean Baby is!!! She's so incredibly CUTE! My favorite picture is the one with all the sticky-tabs on her. Her expression is priceless. ("What the heck, mom???") I'm glad your mom was motivated to take the picture, lol. And she also looks precious in her black, white & yellow. I'm so happy she's doing OK and you're able to be at home with her. Tell Nana Bren#1 that Nana Bren#3 is jealous that she gets to be with her sweet grandbaby all the time (and that I say, "Hi!") Love ya!