Edmund update

Ciaram22 · May 2011

Today we 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.

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.

indigo91804 · May 2011

So happy to hear that you have a plan and it is something they can fix. Stay strong Ciara! Is the Orthodontist with Children's too? I didn't know they did Orthodontics.

Ciaram22 · May 2011

They have 2 orthodontists as part of the craniofacial team.

JodiLinn503 · May 2011

That's good news! I'm sorry you have to go through this, though. That picture of the two of you is really precious.

IkesHawaiian06 · May 2011

Yay for good news! I'm so sorry that you're having to tape his lip, it's awful seeing your baby uncomfortable and I can only imagine how hard it is for you both.Does he have to have it taped 24/7 or just x amount of hours a day?

It's wonderful that it can all be fixed. That is such great news! I hope that the year of appointments and surgeries go by quickly!

Nancy_Drew · May 2011

While he won't remember it, you will, so take care of yourself as well and enjoy this momentous year for everything else it will bring as well. Give him lots of extra cuddles too!

hopefully he will adjust to the tape and will start eating well again. I think his little peach fuzz hair is so cute!

Ciaram22 · May 2011

It has to stay constantly taped unless it starts getting irritated and then we can give him a break from the taping to let it heal.

JRS72206 · May 2011

I'm so glad it's 100% fixable! Hang in there!

ChubbyCheekiesMom · May 2011

I'm glad you got some good news. Hang in there, and your siggy pic is adorable. He already looks like a little man! ((hugs))

Zista · May 2011

I'm happy to hear that things are moving forward. I have a friend whose baby was born with a cleft palate. Two years later, he's gorgeous... you simply can't tell. Babies are marvelously adaptable, so this process will likely be much harder on you than him. ::Hugs::

preston18 · May 2011

Keep us posted and take good care of your self as well! He's going to be jsut fine.

MSTie24 · May 2011

Yay for being totally fixable! That must be a relief to hear although I know the tape and upcoming surgeries is not going to be fun for you. It absolutely will be worth it and you have a wonderful attitude about everything! Please do keep us updated as things progress.

StellaZ · May 2011

MSTie24:
Yay for being totally fixable! That must be a relief to hear although I know the tape and upcoming surgeries is not going to be fun for you. It absolutely will be worth it and you have a wonderful attitude about everything! Please do keep us updated as things progress.

This! Stay strong and know you have some if the best medical teams in the world on your side and no, he won't remember any of this. And I agree, his hair is adorable!!

massagegirly · May 2011

I am so sorry, I hope this is as painless as possible for all of you! I am sure your mommy heart hurts so bad! Stay strong!!!

tfarabians · May 2011

poor little guy! Hugs to all of you! Is he gaining weight ok?

DAWNNA76 · May 2011

I hope that time moves quickly and that all goes smoothly for you and the little guy.

Alli923 · May 2011

Poor little guy! But, it seems like you have a good attitude/outlook about it and that will really make a big difference for him. Even as babies they pick up on how we react, if you stay strong and stay positive, so will he.

Good luck to you guys, it must be so hard to watch your baby go through that. But, totally fixable is an awesome thing!

zazzu · May 2011

I'm sure it's reassuring to know the plan. You've got a good, positive outlook on things. He's so darn cute.

KNemo · May 2011

Alli923:

Poor little guy! But, it seems like you have a good attitude/outlook about it and that will really make a big difference for him. Even as babies they pick up on how we react, if you stay strong and stay positive, so will he.

Good luck to you guys, it must be so hard to watch your baby go through that. But, totally fixable is an awesome thing!

I wanted to say the exact same thing as Alli. You have an amazing and positive attitude. Your positivity is going to help not only you get through the surgeries and follow-up appointments, but it is going to get your little man through all of this too.

Good luck, sweet mama! He is a beautiful baby!

dawnies79 · May 2011

It's so great to hear that you have a plan. You have such a positive attitude and that is going to be so good for you and little Edmund as you go through the process. Ill be thinking of you, and sending positive thoughts.

breebree13 · May 2011

I'm so sorry you are going through this...it's sounds like you have some good doctors and I'm so happy to hear you have a plan. I just want to say how great it is that you have a positive attitude...and like others said it will be great for Edmund and his recovery. You are strong Mama!

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