Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)


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Monday, January 23, 2012

Cardiologist and more

"The course of our lives is seldom determined by great, life altering decisions, our direction is often set by the small, day-to-day choices that chart the track on which we run." ~ Gordon B. Hinckley

My husband, Thomas, had his 27th Birthday last week!  I made his favorite Strawberry cake, but I burnt the cake, heated up the frozen strawberries way to much and same with the whipped cream topping!  Some how it still tasted good! His parents made lasagna for his party and so did mine! haha, that's not his fave but it's still good!  I also got ice cream and root beer for floats.  For his present this year, I got Thomas a nice lunch box that was on clearance and promised to make him lunches for work!  Who knows how long this will last but I'm hoping a while, even though I forgot to do it last night! I love my husband very much!



This past weekend was also Lily's 1st birthday! I took Whitney because my parents had to go outa town last minute to help my sister move back home (whom by the way is engaged to be married!).  There were a few people coughing so we didn't stay as long as I wanted too. Whitney cried when we got there because she was so overwhelmed and scared but after a while and being distracted by a balloon she settled down and decided she was in a safe place.  Lily looked so so adorable in her birthday outfit!  Lily is also a tubie like Whitney! If you remember their tubie photo shoot! from my other blog.  Recently, Lily was diagnosed with Mitochondrial Disease.  She is a very strong little girl with amazing parents and I pray for them daily. 



On Saturday we went to a friend's bridal shower.  It was simple and pretty fun!  It also helped us get some ideas for my sisters bridal shower!  I'm so excited she getting married! 
On Sunday, Thomas' parents were able to stay home from church with Whitney for us! 

Today, we just got back from Phx Children's Hospital for Whitney cardiology appointment.  Same thing of with her crying at the nurse for taking her blood pressure and oxygen saturation levels and her temperature. Her BP was high but that's because she was kicking and screaming.  Oxygen was at 96 which is perfect.  Then they took us back to do the echocardiogram (ultrasound of Whitney's heart).  My mom held her on the bed while I played the her music and danced and sang.  After a while she settled down and the tech got some good pictures.  Everytime the tech would change postition though Whitney would start crying again.  But she did a good job and it didn't take too long.  We waited again in a room for Dr. Puntel.  Now he is the only Dr. likes!  He is able to listen to her heart without making her cry! It was amazing!  (she does also like her surgeon mostly too though).  Anyway he said a bunch of technical stuff that I wrote down but basically, the pressures are looking stable and the numbers are good.  The left pulmonary artery is still small and he wants to balloon it open again in May with another Cardiac Cath.  At that time they may also want to close the PDA and also the ASD maybe.  He said that she did have a PFO but he thinks that closed on it's own.  He wants to do another echo in April too.  He doesn't want to increase the dosage on her Sildenfil, even though she's gained weight, to see if that will very slowly wean her off of it. 










I'm really glad that this will be a much easier week in terms of appointments! Just got feeding therapy and speech therapy!








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