Done crying, now on to taking care of matters. UPDATE

[Corbay]

New to the this forum.

Just had a happy healthy 7lb 8 oz boy on Oct. 26th, with one small problem, he has a single cleft in his lip and gum. Palette is totally intact (no holes in the roof of his mouth at all).

It was a total shock to my wife and I. Everything was normal for the pregnancy, utra sounds, etc.. The delivery went well, I was there with my wife during delivery. I was the first one to notice the cleft. We were absolutely devastated.

It has been a very tough couple of days for both of us.

We have since brought our little guy home from the hospital and he is doing well, but he is having some feeding problems.

We have an excellent doctor who did the delivery, she has referred us to a surgeon who has done many cleft repairs. He has even traveled the world doing them in 3rd world countries. We have our first appointment this next week for the initial consultation.

I have spent the last few days reading through this forum and other sites gathering information, and crying.

We have both pretty much got our emotions in check for the most part, but still have some tough times thinking about the whole thing.

Not looking forward to our little guy have to have a serious surgery at such a young age. It will be such a rough ride.

Look forward to to reading more posts, and seeing more pictures of the incredible transformations that can be accomplished.

I just wanted to give everyone an update. We are home and settled, things are going well. Our Son is going to be just fine. He feeds fine without any special aids, or bottles. Although he does sound like a little pig when he feeds because his lip leaks some air now and then (kinda cute).

We had an appointment with Dr. Lamb in Fargo last week Wed. Things went very well. We have great confidence in the man. He fit us in to his busy schedule one evening after hours, he talked with us for over an hour. Explained everything in detail, and even show us some AMAZING pictures of the work he has done.

It looks like Carson will have his surgery in the end of Jan. Looks like he will probably only need one surgery to repair the lip, and gum.

The more and more my wife and I have thought about things, the less and less of an issue this is. Things could be MUCH worse, and there could be much more serious issues to deal with. We are very lucky.

I want to personally thank all those who posted both public and private messages. I am very sorry I have not responded to them, but with a very active 2 year old and of course the new budle of joy I just have not had much time.

Thank you for all the support!

PS here is a picture of our little guy:

[gc0447]

For: "Corbay":

Hello. My name is Georgette Couvall (Dr. Salyer's patient: http://www.craniofacial.net & http://www.worldcf.org). How are you? Here are my Personal Story & Before and After Picture links:

http://www.craniofacial.net/hypertelorism.htm (Anopthalmus with Frontonasal Dysplasia)
http://www.craniofacial.net/testimonials.htm (Georgette, Patient)
http://www.worldcf.org/support_groups.cfm (Craniofacial anomalies)
http://extratv.warnerbros.com/cmp/spotl ... 06_09a.htm
http://www.cleftadvocate.org/ff0104Georgette.html

Congradulations for your new baby!!! Also, welcome to http://www.cleft.org. I'm from Illinois. If you don't mind me asking, where are you from? Just wondered. Also, if you don't mind me asking, who is your child's surgeon? Again, just wondered. I wish the best for you and your family.

Sincerely,

Georgette Couvall
georgettecouvall@hotmail.com (Email)

[Carrie]

Hi. Welcome to the group. There are wonderful people on here that know exactly what you are going through. My son Hunter was born with a bilateral cleft lip and palate and is now 2 and a half. He went through the lip repair at 5 months and palate repair at 9 months. His bone graft on his gums are still to come but not until he is 5-8.
We found out while I was pregnant at my 19 week ultrasound so I didn't have the shock at birth that you did and had lots of time to deal with it before he arrived but it was still hard.
I suggest looking for a cleft lip and palate team in your area. Where are you from? I also suggest treating him like you would any other baby and do the things that you would normally want to do.
Having your baby have surgery at a young age is scary and difficult but it will get better. I would suggest focusing on right now and not look ahead too far ahead but if you are like me, that's impossible.
What type of bottle are you using to feed him? We used the haberman feeder and some have used the pigeon bottle but I think that we all can say you might have to try a couple before one works for you and your child.
Good luck to you.. again welcome to the group. If you want to talk outside the forum you can email me anytime at hunterbk04@yahoo.com.
Carrie

[Corbay]

Thank you for the kind welcome.

We live in Eastern North Dakota, we were referred to a Dr. Lamb in Fargo (as in the movie Fargo )

I am not sure if he is part of a "team" as I have read on the forums, and websites. Out here in rural areas I will probably be happy to find a surgeon who is experienced with cleft surgeries.

I am sure we could travel to Minneapolis (350 miles). for another team if we felt we needed to. We will probably make that decision after we meet with Dr. Lamb this week.

We have been trying standard nipples, some seem to work better than others.

Were do you purchase the specialty nipples you refer to?

Thanks in advance.

[Mum from down under]

Welcome to the group. A little boy how wonderful I can't begin to understand the shock you & your wife are going though. But I do remember those words told to us when we found out about our son Evan's cleft in our 22week u/s and the pain in our hearts. Like Carrie we use the Haberman feeder. I have placed a link for a lady in the us selling 3 on eBay http://cgi.ebay.com.au/HABERMAN-FEEDER- ... dZViewItem Being from Australia I have found buying them in the US with postage is cheaper. As you can see from our site we Love photos so maybe you can post a pic of your little one Enjoy your little boy now you'll miss his wide smile after the repair. Take one day at a time, & keep us posted. If you need to travel for a cleft team please do so we travel to another state as there isn't a cleft team here in the NT. Take care & try not to worry so much about the op now celebrate your beautiful son.

[martha]

Hello! First, congratulations to you and your wife on your beautiful, healthy baby boy! We, too, found out in the delivery room about our daughter's cleft - it floored us, to say the least. There are so many things that run through your mind - did we do something to cause this? What do we tell people? And then, when you learn more and discover that it's correctable - surgery for such a wee one?

My daughter was born with a fairly large cleft palate (no cleft in lip or gums), which was part of Pierre Robin Sequence (small chin, which pushed her tongue back causing apnea and difficulty feeding). My husband and in-laws were crying for the first 2 days of her life until I kicked them all out of my hospital room! I said "we have an otherwise normal healthy beautiful baby girl - don't come back until you're ready to celebrate!"

Your son (and you & your wife) will soon have his surgery behind you, and you'll have learned a whole lot. Best of luck to you!

[Heide]

Hello Corbay, congratulations to you and your wife on the birth of your beautiful baby boy. I hope that you find this website as helpful as we have in helping us to with our daughter's bilateral cleft lip and palate. I "second" the information in the previous posts and hope that you have luck getting a bottle to work , we use the Mead cleft lip/palate nurser (although it says disposable, we reuse them). the link is below or you may also order by telephone, your may also ask at the hospital for various styles to try. With us, it took a little time to get the flow down for her, we had to figure out how much to squeeze without drowning our little one. good luck and things will get easier. Oh you also may have read it before, but take a lot of pictures, our daughter looked so different (still as beautiful) after her lip repair.
Heide
http://store.enfamil.com/bottles_and_nursers.html or 1-800- BABY123

[chicka-monkey]

Hello, Congrats on your HEALTHY baby. Don't be sad, feel blessed that you have this beautiful baby. You will actually be sad to see his cute little cleft leave his cute little face when he has his surgery! Surgery is so awful, but the drs. are so talented and careful! You and your family will be fine! My daughter had bilateral cleft lip and cleft palate in the soft and hard palate, which was just repaired two weeks ago. You were given this very special baby for a reason! Good luck and welcome to this forum!

[hatchedk]

Welcome! My son is 5 1/2 months, born with a wide unilateral cleft lip and palate. Dr's found the cleft 2 weeks before our due date (It was our 5ht ultrasound...they never saw anything on the first 4). I am grateful that they found it as it helped me be prepared, I understand the shock at birth to have anything less than a "perfect" child is so painful!
We have used the Habermann feeder since Day 1. It made eating so easy for him, now he's a real chunky boy! I am still pumping breast milk for him...I was so disappointed I couldn't nurse.
Surgery was so hard, but we got through it and so will you!
Feel free to check out our pictures and story on
katieandyhatch.blogspot.com and to ask anything!
And don't feel guilty about any feelings you may have. I ran through the whole range of feelings....before his birth I felt like I didn't want him anymore....and I Felt so guilty for that...I cant believe now I felt that way...he is such a happy, healthy baby boy who brings joy and exhaustion to us daily!!!
Hope that helps...

[SONIA]

Welcome and congratulations for your baby boy!

I know exactly how you feel. I had my baby girl on June and she has a cleft palate! We didnt knew either until she was born.
We cried alot too... I still cry when I read other parents stories an I sympathize!
BUT... Think positive. These babies are our "lucky tickets", that is what I say to my husband and we laugh, we are very happy we have her.

You wont remember bad times after the repair. Don't let time pass with sorrow, enjoy your son!!!!!

[Heide]

Dear Corbay, thank you for the update, time is a wonderful thing in helping us realize how blessed we truly are. all the best with your busy household and with the upcoming surgery. Heide.

[Mum from down under]

Carson is a sweet heart. Glad to see all is well @ home you are spot on with. [quote] The more and more my wife and I have thought about things, the less and less of an issue this is. Things could be MUCH worse, and there could be much more serious issues to deal with. We are very lucky.

You will see this more when you spend a few nights in hospital with your little one. Good luck to you & your family

[Hilla]

Hello

I just read your story. It sounds so familiar! I was totally shocked too (Hill had wide unilateral cleft lip and palate). Looking at it now, you are lucky that it is only a cleft lip. And your baby looks already sweet. Keep us updated!!!!

Here is my girls story (I probably sent it to you already with the oil question...) http://halkiovave.vuodatus.net

-Laura

[heather]

Congratulations on the birth of your little boy. How very cute. His lip looks identical to my sons lip right now. I gave birth to a little boy Nov. 8th who has a unilateral cleft lip and a bilateral cleft palate. He is also deaf in his right ear because of the cleft in the palate. That is such great news that he can feed without special bottles. My little guy is using the pigeon bottle right now and doing excellent. You should thank God that it was not a complete cleft in the lip and that he does not have a problem with his palate. I know that sounds like me saying that it's no big deal, but I'm not. It is still a big deal for such a young baby to be having surgery. But it is fixable and it could have been worse. 70% of babies born with a cleft lip are also born with a cleft palate. You can expect his surgery to be done when he's 3 months old. I haven't gone through the surgery experience yet, but I will be here shortly. If you would like to talk about things or just need a companion during tough times feel free to give me a shout. Congratulations again, Heather