tag:blogger.com,1999:blog-9194462641520573839.post3282943227267936172..comments2016-11-14T10:12:10.546-07:00Comments on Whitney Kaholumehekainani: Whitney and familyThomas & Alicia Montgomeryhttp://www.blogger.com/profile/10754907270135710848noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-9194462641520573839.post-4086985069285208222011-02-01T02:03:57.903-07:002011-02-01T02:03:57.903-07:00I have been following Whitney's story for some...I have been following Whitney's story for some time now! It was linked from another CDH blog I have been reading. <br /><br />I just have a couple of quick suggestions to help her eating- I hope you don't mind, but I have been down this road. Just some things worth thinking about...<br /><br />I did an NG tube wean with my 7 month old LCDH/ECMO survivor since he was "kind of" an eater, but wouldn't do it all himself. It required lots of journaling, keeping track of how much he ate by bottle, how much I had to put through his tube, help from an OT, support from his GI doctor and general practioner, and adding the medicine Cyproheptadine(generic)or Periactin (name brand). It is actually an antihistime, but can be used as an appetite stimulant! And boy does it work, if you use it at the right time during a tube wean. It was a tough few weeks, but it worked and at the end he was a 100% oral eater and still is at 20 months! I got lots of support from Sofia Miller's CDH website (you can Google it). She did a similar tube wean and it is very well documented on her website if you go back a few years. Lots of reading, but it is worth it. Getting these kids to be great eaters IS possible! It is just getting that HUNGER mechanism to kick in. It's hard because NG tube fed babies don't feel hungry too ofen cause we are always supplementing them!! <br /><br />And one more thing, my little one is STILL on Prevacid and it works great to control his reflux, which if it isn't under control, he doesn't eat as well :(<br /><br />Hope her cardiac cath goes well...we will be praying for you that they find an answer!Lhttps://www.blogger.com/profile/17427528853595194343noreply@blogger.comtag:blogger.com,1999:blog-9194462641520573839.post-1466207297253457852011-01-29T22:07:40.930-07:002011-01-29T22:07:40.930-07:00Hi there! I just came across your blog...Whitney i...Hi there! I just came across your blog...Whitney is BEAUTIFUL! My son, Jaime was also born with RCDH. He was never on ECMO, but he was a preemie and is also a hemophiliac...ECMO would have been very risky on a hemophiliac. He was on the oscillating vent twice, and he, too came home with an NG and O2. It's amazing how far these little miracles have come! <br />The irony of your latest post is that Jaime, too has to go for his first heart cath. His echo was fine, but he has chronic respiratory stuff going on, so they want to make sure the heart isn't affected in some way. (I'll tell you that even though Jaime is 21 months old now and has had two repair surgeries, PE tubes and a few bronchial scopes, sending him to the OR again and for that scares the heck out of me, too!)<br />Anyway, I just wanted to introduce us and tell you what an amazing job you're doing with your little one! <br />Take care,<br />SherylJaime's Worldhttps://www.blogger.com/profile/02164450421168557829noreply@blogger.comtag:blogger.com,1999:blog-9194462641520573839.post-44190407731819974602011-01-28T02:00:34.069-07:002011-01-28T02:00:34.069-07:00Oh ya, and the daddy laying the baby down with all...Oh ya, and the daddy laying the baby down with all her toys and going to the computer or video game....that's a man thing. Thats exactly what my hubby does! lolRachel Starchmanhttps://www.blogger.com/profile/06173358803727903878noreply@blogger.comtag:blogger.com,1999:blog-9194462641520573839.post-8565458040173961222011-01-28T01:59:14.682-07:002011-01-28T01:59:14.682-07:00I've been thinking about you guys so much late...I've been thinking about you guys so much lately and really want to come visit! Next week we have a few appointments but Matthew will be home so I can come alone! I'm so needing some baby girl therapy!Rachel Starchmanhttps://www.blogger.com/profile/06173358803727903878noreply@blogger.com