Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)


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Wednesday, November 24, 2010

Increase the Oxygen!

The past couple of weeks have been busy, as usual, with our little bundle of joy. Whitney is growing and getting bigger and funner everyday. Whitney is 4 months old!!!


I've been trying to write since Sunday! Sorry! And now both of my sister's are here so I'll go hang out with them soon! I just wanna write a little update.


We went on another little walk! It was cool in the shade and warm in the sun. Thanks to my little brother, Clayton, we got some cute pics! Not sure if we'll go again though, getting chilly and really dry outside.


Thirsty?..... Heheh nope! She had fun though!





Well, this is her thing now, she's very comfy when she puts her right arm up. She does it wherever is laying! So cute! See, she's got a couple tiny fat rolls!











This was my rocking chair when I was little! Whitney's sitting up in it pretty good! Yes, she has a ton of tape on her face! She just keeps pulling it off!









Last week Whitney, me, and my mom went to Phoenix Children's Hospital for a Modified Barium Swallow X-ray. This was a terrible experience for my poor baby. They sit her in a little bumbo like seat with a little apron on and buckled her in. I stood there with her oximeter and oxygen wearing a lead apron. The X-ray tech helped hold Whitney's arms down. She was screaming and wouldn't take the bottle of barium, obviously, so we had to syringe feed it to her. When it was the consistency of her formula, she aspirated. Then they handed me another syringe with it thicker, a nectar like viscosity, and it went right down. The speech pathologist then recommended that we feed her the nectar viscosity. We either do it by mixing her formula, already 24 calories, with rice cereal or oatmeal cereal. Or we use some expensive gel called Simply Thick. We've been using rice and now oatmeal, we have to grind it up to a powder because the flakes don't go through the Dr. Brown system. Took us a while to get it right but Whitney seems to really like it. She's not eating more, in fact maybe even less amounts at a time but she's getting more calories with the cereal. I'm not planning on starting solids this early but maybe in a month since we've had to thicken her formula. I should get busy learning how to make baby food! Any advice?






Owner of Mommy's Heart! For Sure!








Also, Last week the Physical Therapist and the Speech Pathologist came to work with us. Not much new there. They will probably come every other week! Whitney's doing pretty good with tummy time and will once in a while roll over by her self with out crying!


Awww, reading The Rainbow Fish to her giraffe!



And she eats The Rainbow Fish!






Then last Friday, when I took off Whitney's tape on her face, her cheek was really red and looked really sore. Poor baby girl. So I called the Dr. and they wanted to see it of course. It smelled because it was retaining some water from a bath the other day. So we had to go in and the nurse practitioner said to let it air out and put some Aquaphor on it. They weighed her and she was 11 lbs. 1 oz.




Can't skip a Sunday! Love going to Church! Thank you Dad for taking care of Whitney for us! Next week is my turn! Whitney turned 4 months old! She's always grabbing at what's in front of her and putting it in her mouth and chewing on things. And she is drooling everywhere! Teething! We also went to Grandma & Grandpa Holmgren's! Whitney's first time to go there! Of course making sure no one is sick and that they don't crowd around her. We had a really good time and Whitney did good too. She was talking very loud at one point when everyone else was, it was so funny. And Thomas's brother Jeff came from San Diego! We didn't think he was coming but he surprised and said he moved to AZ! I'm so glad because now he won't be the mystery uncle to Whitney! Hahah.




So Monday was the Big Crazy day for us. First we went to the Pediatrician for the 4 month well check and immunizations. Whitney now weighs 11 bls. 4 oz. yay! she gained 3 oz in 3 days! The pediatrician, DR. K. is getting to know Whitney better so I think she's doing a good job. She seems to be on top of things now. And when she noticed Whitney grunting and her heart murmur a little stronger than usual, and I told her she has been sat ing at 95-97 and not the norm 100, she was concerned and sent us right over to the cardiologist, (Dr. R. was not there but we found to like Dr. P. much better).
So we went home for a minute to get Grandma Barlow's lunch and some more food and an extra oxygen tank for Whitney, then headed off for St. Joe's. They got us in right away and did an ultra sound. Bunch of technical words and stuff, crooked something, but ultimately her pulmonary hypertension was a little worse. They sent us over to the hospital for a X-ray. We had to walk by the NyICU Annex so I was trying NOT to think much about it, so that I wouldn't cry. Waiting to get the X-ray taken took forever! But Whitney did pretty good. Poor thing was so tired and couldn't get sleep or eat well that whole day. We went back to the Cardiologist, Dr. P., they did another ultrasound and wanted to test increasing her oxygen! She's on 1/4 L. flow and we cranked it up to 1 L. So then the Dr. decided it would help her to be 1/2 L. flow, which is double what she was on! Darn! Complete opposite of weening her off but whatever will work to help her out! He showed us the X-ray and said that her lungs have grown! It's looks much better than the last one taken on 9/18 in the ER. Yay! So that whole Monday, we were at Dr's. from 9:30 AM to 5:30 PM!


I was born at St. Joseph's Hospital!


Also Thomas and I have fun sometimes too thanks to my mom who takes care of Whitney for us! I'll talk about Bowling and Mini Golfing later though!




1 comment:

  1. Whitney's such a cutie! Love her little cheeks! Sorry to hear of the increase in O2, but she will make progress on her own time! Can't rush little ones!

    As for the baby food making, we used Ruth Yaron's book, Super Baby Food, as a point of reference for feeding Charlie. You have to be careful not to get caught up in the "expected" eating progress and schedule that she lays out because each baby is different even when they dont have underlying conditions! She gives a ton of good advice on making your own cereal from ground up whole grains and specific information on turning different fruits and veggies into baby food to be used and stored. It was and still is a great resource for us! Hope that helps!

    :-) Patty D'Angelo
    mom to Charlie, 2/4/09, LCDH survivor

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