Hi. :) My daughter Vilija was born with a wide unilateral cleft lip/palate...

Emily - posted on 11/16/2008

that piece about missing their smiles... I know I'm going to miss how wide and gummy his smile is now!

Melissa - posted on 11/15/2008

Hi Ladies,



The words of wisdom are more than appreciated here as well. Keifer goes for his first surgery one month from today. I'm nervous about it, and trying to stay calm and not get hysterical. He's having his lip repair done, as well as having a hernia fixed. My husband is like a rock and it doesn't see to be bothering him or making him anxious at all. I think that's making me worry for the both of us!



Laurie, I'd like to see the pictures. I've seen some online as well, and i know what the surgery entails But it would be nice to see the progress from jut out of surgery into the recovery days. I'm sure we'll be taking pictures to have for reference for us.

Haven - posted on 11/15/2008

Madi's first surgery was so hard on me. I couldn't stop crying. I cried when they took her away. I ran up crying to hug her surgen when he came out to tell me it went well. I cried when I saw her in recouvery. I was so shocked at the difference in the way she looked. It will literally take your breath away. I was inshock. I almost missed the way she looked before, I know that sounds weird but I was used to her smile. It was beautiful. It took a while for me to get used to the way she looked. Your baby will recouver quicker then you think. Madi was back to her old self with in a couple of days. The palate surgery is a bit of a harder recouvery for them, but she was still back to herself within 4 days. Good luck!

Laurie - posted on 11/12/2008

Welcome Vida!
Emily....the 1st surgery can be the scariest because everything is unknown. I think, more than anything, bring family...they will keep you comforted. Everyone here has given you great advice in general. I have pics from the surgery before and after (I mean...as he was rolling out of the doors of surgery...I can post them if you'd like. Be sure to expect your baby's face to be swollen (I wasn't prepared for that nor the vaseline on the eyes which is just there for protection). The swelling will significantly go down over 24 hours. They will sleep a lot and may have a reaction to the anesthesia....but not to worry, hang in there...just let them know you are there by holding them and singing to them...it all helps...both of you honestly. In 3 days or less, you'll feel like a pro (unfortunately).

Oh...and do whatever FEELS RIGHT TO YOU...you know your baby best...don't hesitate to ask questions, pull nurses into the room, contest medicine if you feel they don't need it, ask for medicine if you feel they do need it, try food when you think they are ready, hold them as soon as you feel comfortable, ask for help when needed.

Emily - posted on 11/05/2008

Thank you Vida and Marie... very helpful - I'll keep you posted!

Marie - posted on 11/04/2008

I was going to say be sure you eat. We try not to eat in front of Drew because that makes it harder for him to go without, but I always brougth something and/or we brought cash to go to the cafeteria. I agree that you will need something to distract yourself with too. I think you go into it educated and calm and you will be OK.



I think some moms think they should be distraught or beside themselves. I think it is reasonable to be scared or worried. I don't think you have to be crying continuously or unable to stand. There is nothing wrong with being strong for your kiddo! I always bring my husband with me instead of leaving him with the other kids. It helps to lean on each other so we can show a strong front to Drew. I hope this doesn't sound like I think being sad or scared is bad or for wusses. I have just seen a couple parents with their ENTIRE family in the waiting room or read posts by moms who sound like they are getting themselves worked up. I don't think that is necessary anymore than NOT crying at all.... OK, I hope that made some sense.

Vida - posted on 11/04/2008

Hi Emily...
First surgery is coming up? I wish you and the little one all the best! I know how anxious you must be feeling right now, I truly can sympathize. My daughter's first surgery was done at the age of 3 months.
Trust the surgeon, trust the team. They WILL take care of your sweetie, I can assure you of that.
Ask questions, voice your concerns/fears.
Our surgeon is amazing, he always reminds me that before a surgery, if I have any questions, concerns, fears... to call or e-mail. I remember before one of my daughter's surgeries I had a major fear, I called his secretary, and she said "Hold on a sec, he's right here..." and he was on the line immediately. There were many times I would call and he would call back within the next couple of hours or the next day. I would e-mail him, he would respond very quickly. (All of this provided he was available and in town, of course.)
He has given us a sense of reassurance that is very comforting.

Make sure that, during the surgery, you are keeping yourself occupied. EAT, don't skip out on doing that. Go to the cafeteria, enjoy breakfast. Bring a magazine or two, bring lots of change for the vending machines. (Chocolate kept me going. ;) )

Our daughter was born with such a wide cleft, we had no idea of what to expect of her looks afterwards. She had a whole new look about her. I was the first to hold her, and it was really an awesome moment, having my baby back in my arms again.
We spent a couple of nights there, it was difficult, she didn't sleep well at all. But we got through it, just as you will, I can promise you that!
There is so much more to share, but it's such a long story... I promise to share more a bit later, the kids are home from school today.
If you have any questions, let me know. :)

Emily - posted on 11/03/2008

We have our first surgery on Nov 26th - any words of wisdom?

Vida - posted on 11/01/2008

Being a sick mom is horrid... especially when one has two sick children as well! :( My kids came home from school yesterday, and Vilija felt awfully warm. Took her temp -- it was 100.8. My son Andrius said that he wasn't hungry/thirsty at all, and I knew that it was not like him. Took his temp -- 100.something.
*sigh*...
So Drew used a straw in the restaurant as well? Too funny. We made it such a huge deal. Another thing that Vilija did at a restaurant (earlier) was sign the whole sentence "I want more, please." During speech therapy way back then, the ST incorporated ASL with verbal language, it was so much fun. We still play around with the ASL.

Surgeries are difficult at any time, yes. I understand, though, that winter would be a tough time b/c you're hoping that your child doesn't get sick. The ear and sinus infections that Vilija gets are horrid.
Her next major surgery will be the bone graft, at around age 8.

Marie - posted on 10/30/2008

I hope you get feeling better soon, Vida! It is hard to be a sick mom!



I do know ALL about the speech issues. And I clearly remember the first time Drew used a straw. He had to be almost 3 yo and my mom and I had been "teaching" him how for months... and then he did it all on his own! We were so happy. We got some weird looks from other people in the resturant, but we didn't care and they quickly saw we were just so excited that he had done something for the first time.



Surgery times are so hard. Our last one was in January and I was panicked that he would get sick. I love summer surgeries- still not a guaruntee, but less risk.



Well, I managed to get my 3 biggest boys into bed and my husband is holding our baby who just fell asleep....maybe I should get some sleep while I can! (The baby is only 6 weeks old and colicky, so sleep is something I have not had much of this week! LOL!)

Vida - posted on 10/30/2008

Hi Marie, thanks for the welcome. :) Vilija was born with a very wide unilateral cleft lip/palate. The 7 surgeries she's had so far were the typical cleft operations plus the cleft-related ones (dental), and during 5 of the 7 tubes were done either in both or one ear, with the first surgery ever putting both in, naturally.

I know what you mean about getting crazy at times... I'm such a neurotic mom when we're getting close to a surgery date. It never gets easier, in my opinion. No matter if it's the first surgery or the 10th, it's still just as difficult.

Vilija is doing wonderfully, we're thrilled with her speech progress. You know how THAT goes! ;)

Something I still giggle over is this -- when she used a straw for the first time successfully, I cried out of sheer happiness. I'm sure you felt the same when your son did so. We were at a restaurant, and she did it, and I told everyone who would listen, LOL. It's something that parents just take for granted, something that most kids are doing at a pretty early age. But for us, it's something so much more special.

Yes, I'm rambling... sorry. I tend to do that!

I look forward to getting to know everyone around here. I'd post more now, but I ended up with a temp of 102 earlier this evening, NOT very pleasant, and I really need to hit the sack.

Marie - posted on 10/30/2008

Welcome! My son is just a year and some older than her. He had a complete bilateral cleft lip and palate. He has had 4 major surgeries for cleft and 7 other related procedures under anesthetic as well as 3 unrelated surgeries... 14 total. It can get crazy, but I, like you, am eternally grateful to his surgeon! The man is a genius.