tag:blogger.com,1999:blog-1110801596335141084.post177142454249133802..comments2023-09-09T03:51:19.862-04:00Comments on Jacob's Journey: Look who is dressed!Kathy Bakerhttp://www.blogger.com/profile/04770278646550731651noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-1110801596335141084.post-48657072305950370252010-04-11T21:36:53.861-04:002010-04-11T21:36:53.861-04:00My goodness! He's so handsome! Love the pics -...My goodness! He's so handsome! Love the pics -- thanks for sharing!<br /><br />Chase had a paralyzed left vocal cord after his Norwood but his cry got stronger after about 4 weeks. Do they plan to send an ENT doctor over to do a bedside bronchoscopy to check his throat and vocal cords?<br /><br />Totally random, but when we met with Chase's surgeon immediately following his Norwood, we asked him when he breathes a sigh of relief, and he told us not until <i>after</i> his Glenn! It's so true! But life after the Glenn truly is fantastic! In the meantime, keep doing what you're doing. Watch Jacob, not the monitors. You'll be home before you know it! :)mom2lohttps://www.blogger.com/profile/04174307421334196127noreply@blogger.comtag:blogger.com,1999:blog-1110801596335141084.post-16586291639504862772010-04-10T14:34:34.131-04:002010-04-10T14:34:34.131-04:00Just curious, have you looked into having a home m...Just curious, have you looked into having a home monitor? We have one, and many others do too... the doc just needs to order it with a letter of medical neccessity. It gives such peace of mind at home... and if there is vocal chord issues along with the heart, I cannot imagine insurance refusing! So glad he is doing so well, he looks wonderful, and you too!! Heart hugs, JoyJoyhttps://www.blogger.com/profile/05585659147448217088noreply@blogger.comtag:blogger.com,1999:blog-1110801596335141084.post-23633610834014161182010-04-10T10:37:08.855-04:002010-04-10T10:37:08.855-04:00Thank you all for the advice. Amy, yeah he turns a...Thank you all for the advice. Amy, yeah he turns a burgundy color to. I say blue but burgundy is more accurate. Purplish. Anyway I know its something I will get used to, just scary right now. I will def. look into the heart monitor for home.<br /><br />Jacob was breathing a little to fast last night on the bollis feeds so they are going to try again today. Praying he does well so we can start trying bottles. <br /><br />One day at a time.Kathy Bakerhttps://www.blogger.com/profile/04770278646550731651noreply@blogger.comtag:blogger.com,1999:blog-1110801596335141084.post-84707213841077196032010-04-10T06:18:49.165-04:002010-04-10T06:18:49.165-04:00Aly did the same thing when she came off the vent....Aly did the same thing when she came off the vent. She had NO voice at all. By the time we left the hospital she was screaming as loud as any other baby. And the same thing with the turning blue. The hospital kept saying she'll learn, she'll stop doing it soon and they were right. It wasn't more than a few days. So glad to hear Jacob is doing so well!!!Jennyhttps://www.blogger.com/profile/03815949154302796501noreply@blogger.comtag:blogger.com,1999:blog-1110801596335141084.post-25302911429856630632010-04-10T01:41:13.038-04:002010-04-10T01:41:13.038-04:00Wow, he is doing SO well - and looks so good! LOV...Wow, he is doing SO well - and looks so good! LOVE the pics! I second Nicole's comment on the pulse-ox monitor. We actually bought a refurbed one (the company was recommended to us by another HLHS mommy) for $500 - I can get the company's info to you if you like. Totally worth it, in my opinion - helps me sleep much better (although, I still can't wait to be past the Glenn as well!)<br /><br />Sorry to hear about his weak cry - but he hasn't been extubated too long yet, has he? Sounds like there's a good chance it will come back soon. As you know, Bodie has vocal cord paresis on one side - and don't worry, even if little Jacob has it, you get used to it and you will hear him. Mama knows, don't worry - I can hear Bodie from just about anywhere in the house even though his cry is still so weak! <br /><br />And I totally relate to the comment about him turning blue. Bodie doesn't turn blue - he turns a deep burgandy, almost black. Freaked me out beyond belief the first time - but you get used to it, don't worry!<br /><br />Hang in there mama - Jacob is doing great!Amy Bennetthttps://www.blogger.com/profile/06256967321013244018noreply@blogger.comtag:blogger.com,1999:blog-1110801596335141084.post-46481877052049352842010-04-10T01:06:24.184-04:002010-04-10T01:06:24.184-04:00Ask if they will send him home on a heart and oxys...Ask if they will send him home on a heart and oxysat monitor. Our hospital required it and although our insurance does not pay for it ($267/mo), it has allowed us to sleep much better!!!! We will only have it until after the Glenn. Jacob looks really good. Good luck with the bottle feeding!Nicolehttps://www.blogger.com/profile/08750687997109727558noreply@blogger.comtag:blogger.com,1999:blog-1110801596335141084.post-41689973169022414402010-04-10T00:00:45.460-04:002010-04-10T00:00:45.460-04:00What a sweet baby!!!!! He looks so wonderful in cl...What a sweet baby!!!!! He looks so wonderful in clothes! Aww! I hope he does well with the bottle. <br /><br />If I haven't already said it, thank you so much for sharing your journey. It's you and other HLHS moms that help me prepare for my journey that will start in July.Jillianhttps://www.blogger.com/profile/08841091152117489792noreply@blogger.com