Specialist app. for cleft (Venting)

vkroupa

i am a little worried about Tuesday. see a little more then a month ago we found out that our baby boy has a cleft lip. yes i know its not that big of a deal well that is what people keep telling me. after so many issues with other pregnancy's that lead to losing 3 other babies we are finally going to have a baby i should be happy that it is only a cleft lip and not something life threatening. it kills me that i will have to be walking into a hospital when my boy is only a few months for him to get a surgery(s). anyways Tuesday a day before we leave to go to Chicago for our baby shower Saturday we will be going to the doctor to see just how bad his lip is and hoping that it is just the lip and not his palate also, then in 10 weeks i will be seeing a surgeon that will go over how many surgery's my baby will need and when he will be needing them. no one besides 2 other people know about what is going on with our boy at this time and the 2 people that do know just keep making me feel bad for how i feel about what is going on with my baby. yes my baby will live a healthy life but no one wants to be planning a surgery for their baby before they are born or thinking about the things your child might not be able to do or experience the first 5+ months. Just wish i had someone here to support me and be by my side someone i can talk to that wont judge how i feel, yes i have my husband but he doesnt help me feel better he is just one of those people that keep telling me "well it could be worse. its not that bad it can be fixed" 

F47

While I haven't dealt with anything similar, I understand your concern. I'm sure you feel almost slighted in a way that you have to worry about your newborn's impending surgery when other moms to be don't have to think about something like that at all.

I'm sure your family and friends are just trying to help you feel better by telling you to be glad it's not something worse, and that it can be fixed. But, I can understand you wanting someone to vent to without being made to feel bad for your feelings. 

I do know this: once that sweet baby is in your arms, you'll be so in love that hopefully what others say to you won't even register. It won't change your nerves about surgery, but I know the good times will outweigh the bad. 

Good is luck on Tuesday. And let us know what you find out. 

serenaxo84

I understand how you feel- I haven't been in the same situation but I can relate in other ways.

you have every right to be scared or nervous- and a cleft lip is a big deal- it requires surgeries which is always nerve wrecking.

you mentioned that you've had a couple of losses and the last thing you want to feel is ungrateful but being upset about this condition is okay- and it's normal. What you've dealt with in the past is going to reflect on this pregnancy and while things can always be worse- it's still okay to be feeling the way you are. i sometimes think that saying things could be worse is insulting- my husband said it to me today because I am having a hard time being on bedrest but I know things could be worse- I think about the worst every day as I am sure you do to. I just think people don't always know what to say. 

Let youself feel your feelings and don't let anyone make you feel guilty for feeling the way you do.

ashleyp625

Good luck on Tuesday! 

queen_frostine

I recommend finding a forum or support group for people whose children have the same condition. While we can sympathize, they are really in the same place (or have been) and can help you not just with your feelings about finding this out but with more details about the treatments and coping mechanisms as you progress.

serenaxo84

@rainmira9e very good advice!

JennJenn81713

I just want to wish you the best of luck!

coffee89

I don't have any experience in cleft lips or infant surgery, but I am so sorry you guys are dealign with this. Have you tried finding a FB group to have someone to talk to? I found a few when we were dealing with DS's feeding and stomach issues and it really helped me feel more positive and not so alone. I wish you the best of luck tomorrow.

gatorMom2014

Good luck!  My first had a condition with his fingers that required surgery at 7 months.  I didn't know before birth, but found out right after delivery.  My situation was not the same as yours, but I can relate to the shock of finding out something is not right with your little munchkin, and having to go into full on mama bear mode to make sure everything is taken care of.  

when choosing your surgeon, I was told to ask him/her how many of this exact type of surgery have you done, and what are your statistics for success.  You want to find someone who has done dozens or hundreds of this surgery, and not someone who is a general surgeon.
 I was so worried about my baby going under anesthesia, but he ended up doing great, with no problems.

hang in there.  It is "unfair" to have to deal with this, but your baby is lucky to have you as an advocate.  That is one of our top jobs as a mommy--advocating for our babies from day one to make sure they get the best care and opportunities.

vkroupa

well we went to the doctor and Samuel (our baby boy) kept covering his face besides for a sec. were the doctor said it is really small but can see if it is also the palate and it could even just be a dimple but Samuel was not having it he had no problem showing us his left side but not the right the side we needed to see no matter what we did he wouldnt move so they want us to come back in 4 weeks on the 16th to see if Samuel will let us see what is going on i really hope if it is a cleft lip that it is just the lip so we have more of a chance to breastfeed but we have another long 4 weeks to wait and hopefully we get some answers next time ill keep you guys updated thank you all so much for the kind words and thoughts 

Michi1382

Good luck on Tuesday and I know that you'll do the best job on earth helping your son through those surgeries! I agree about finding groups on FB for support and questions. There are a ton and they can help you! Great vibes to you and to your beautiful son.