Wedding Etiquette Forum

NWR: BR: Edmund Update

Yesterdaywe met with plastic surgeons to discuss timelines and what steps will need to be taken to correct the lip and palate.

He will need a NAM device (Nasoalveolar Molding) to help mold and shape the palate so that it will be easier to close once that surgery comes up. So that pushes his lip repair back to 4 or 5 months instead of 3 months.

We also have to tape his lip to help stretch it and force it to grow closer together to make the lip repair go a little smoother.

Our next step is to meet with the Orthodontist to get Edmund fitted for his NAM which will require us to go to Children's hospital once a week to have the device adjusted. We will have to tape his lip continuously until the lip repair.

It's so frustrating to see him like this because he looks so sad and uncomfortable. He's not taking his bottle like he normally does but they told us that was normal for the first couple days.

He is feeding much better now and was back up to 7lbs 1oz yeterday.

The good news is that it can all be fixed! Yes it's going to be a stressful year of Drs appointments and at least 2 surgeries plus followups. I know it will all be worth it in the end and I'm just really glad that he won't remember any of it. 
Uploaded from the Photobucket Android App

Re: NWR: BR: Edmund Update

  • Aww.. poor little guy.

    It will be worth it in the end.






    What differentiates an average host and a great host is anticipating unexpressed needs and wants of their guests.  Just because the want/need is not expressed, doesn't mean it wouldn't be appreciated. 
  • Ciara that is such wonderful news! It is so amazing what doctors can do nowadays. :D  I'm guessing it is harder on the parents than the kiddos because the parents understand what is happening and remember everything. I'm sending hugs to you and Edmund! 

    Does it feel good to be getting the ball rolling with his treatment pre-surgery? I mean, having a plan and something active to do might feel better than the waiting game of the last week or two? 


    image
    Lilypie Pregnancy tickers
  • mica178mica178 member
    5000 Comments Fourth Anniversary 5 Love Its
    Hugs to you and Edmund, Ciara!  I know that it all sounds a bit overwhelming, but luckily, Edmund won't remember it at all, and, as with anything, when you take things one day at a time, it'll be more manageable than you think.
  • This is good news! :) One day all of this will be a distant memory and it will be worth it in the end. Just take it one day at a time!
  • It feels good to have some answers. We still don't know exactly when surgeries will be but even just knowing an estimate is better than nothing.
    Uploaded from the Photobucket Android App
  • Good luck Ciara! I think I mentioned once that my cousin had a cleft palate, but this was 30 years ago, so the technology to fix it wasn't as up to date and she went through many more surgeries. It sounds like little Edmund will have a long year, but afterward he'll be good to go!
    my read shelf:
    Meredith's book recommendations, liked quotes, book clubs, book trivia, book lists (read shelf)
    40/112

    Photobucket
  • Hey Ciara!  I'm sorry to hear about Edmund (I loooove that name, by the way!)  I'm assuming he has a cleft lip and/or palate?  Did you know that before he was born?  Forgive me if these questions were already asked - I was away honeymooning and all :)

    Surgeons are excellent at fixing these things!  Our high school raised money every year for an organization known as Operation Smile.  Volunteer surgeons, nurses, and regular people go several times a year to third world countries to fix cleft lip and palates of children who otherwise would never be fixed.  It's amazing for them - some of the children die because they can't adequately drink milk or are shunned by their societies.  They do over a hundred surgeries per two week visit (or something along those lines).

    Anyway - long tangent.  Good luck with everything!
  • Joy we found out at our 20 week anatomy scan.
    Uploaded from the Photobucket Android App
  • Poor little guy!  Lots of good thoughts for successful treatment and surgery.
    The Bee Hive Est. June 30, 2007
    "So I sing a song of love, Julia"
    06.10.10

    BFAR:We Defined Our Own Success!
    image

  • That's great news that everything can be fixed! Lots of positive vibes going your way, Ciara!
    imageDaisypath Wedding tickers
  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_nwr-br-edmund-update?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:3665699a-7f07-4a2f-a989-452c67b82dc8Post:b510b828-4ef6-401b-ac90-30672140f146">Re: NWR: BR: Edmund Update</a>:
    [QUOTE]Joy we found out at our 20 week anatomy scan.
    Posted by Ciaram22[/QUOTE]

    Ah - at least it wasn't a surprise at the birth.

    Best of luck to you and your little trooper! :-)
  • This is good news! It makes me sad that he's going to be so uncomfortable with all the preparations, and I just want to cuddle him. At least it's all fixable and he won't remember a thing!
    9.17.2010
    planning

    image
  • Aww yay! I'm so glad everything can be fixed! But I know how hard it is to see little ones uncomfortable or in pain.  Sending lots of love to you and Edmund. <3
  • Aww, Ciara. Thanks for the update. Glad to hear the appt went well and you guys know what will be ahead of you. I will continue to keep you guys in my prayers. Edmund is so precious and like you said, he won't remember any of it and will grow up a healthy little boy.
  • I just wanted to send hugs to you both.  I'm 51 and had a cleft lip but not palate.  My surgery was done when I was 6 weeks old by military doctors.  I have always been eternally grateful for what they did so long ago - I can only imagine the wonderful things they do know with the plastic surgery.

    I have a scar above my lip but I really never notice it or become self conscious about it.  It's not bad at all.  I would love to see a picture of Edmund post surgery just to really see what wonderful things they can do now.

    Good luck!

  • I'm so glad to hear that it's all fixable and that you have a plan in place!  I can't imagine how much better you must feel.  I'm sorry that little E is uncomfortable, but it will all be worth it and like you said, he won't remember any of it.
This discussion has been closed.
Choose Another Board
Search Boards