Cleft Lip Surgery Post Op....Need Advice and support!

[kiwi]

I am so glad I found this forum! My son, Carter was born with a bilateral cleft lip and complete cleft palate. His lip surgery was performed one week ago. We were in the hospital for two nights since he was not eating well. When we did finally come home he still cried every time I tried to feed him. He was taking about 6 ounces total per day! Awful

Sunday (the day before his stitches were due to be removed) he bumped his nose and the incision on that side came loose. Due to him having a bilateral cleft, it was very tight on either side of his nose/lips. We rushed him to the ER but because it was a Sunday, there seemed to be no one there who had a clue. On top of that, his plastic surgeon was and still is out of town till July 31! So the people at the ER basically told me that they felt uncomfortable working on a baby his age and to just wait till my appnt the next morning

Monday we took him in to have the stitches removed. The nurse said that it was okay (it did not look okay to me), and that the scar on the one side just may be a bit wider and they could go in and adjust that later. Okay! When I told her how little he was eating she said I really needed to get him fed. She helped me feed him-and told me that basically, even if he's screaming, I need to pump that milk in. So since that time feeding (I'm getting 3 ounces in every three hours) has been awful. I feel like it's traumatic for him. He screams the entire time and seems to absolutely hate being fed. However, he is in a better mood in between feedings so I guess this is okay? Does this sound at all familiar to anyone??? I just want to know that he will go back to enjoying feeding and that I am not scarring him for life!!!

Anyway-the break in the incision on the one side is getting progressively worse. Although it is covered with tape, I can still see air bubbles when I feed him. His lip itself looks fine-the break is actually more near the nose so his nose looks crooked!!!

I called again today and was told that I need to bring him in first thing on the 31st (that's when his plastic surgeon is back in town). Well that is FIVE days away!!!!

Needless to say this week has been awful and I am basically a basket case His plastic surgeon supposedly is one of the best in the nation and has performed countless cleft surgeries. I hear constantly everywhere I go how great he is. So why is this happening? Is this a common occurrence? What will they do to fix it?

The feeding issue is so hard too. I just feel like all I do is traumatize him every time I feed him. Please SOMEONE tell me this is normal? If I know that others have had this problem and that it's just part of recovery...that it DOES go away, then I'll be fine. I just can't seem to find any information on it-or anyone who has been through this situation.

My poor baby-I just want him to be happy again

[Kerri]

Welcome to the group! Sounds like you've had a rough few weeks, huh? Ella is 11 months and born with a UCLP..I'm not sure how or what you're using to feed with..She took her bottle that same night she had surgery..Mead Johnson bottle..Force fed while they are screaming..Hmm...One nurse did that when she was 1st born and I didn't go for that AT ALL!! It is hard to feed them at first..You don't know if you're hurting their stitches or what..I think it is worse on us than them..They do have zip n squeeze feeders..Or a syringe..Ella had stitches under her tongue as well and took to her bottle right away..We only put the end in her mouth..She let us know how comfortable she was and we went from there..She took 2 ounces every 2 hours..I wanted to pull my hair out lol..Made for some long days!!! I wish I had advice about the stitches..I'm not sure what to tell you there..I know it's hard but I hope you'll find some answers on here!!

[Kerri]

[/b]I didn't see an email address for you so I hope you don't mind if I sent a private message!!

[Carrie]

Hunter wouldn't take the bottle at first after his lip repair, he would just scream too so I feed him with a syringe for about a week, then slowly brought the bottle back. It's kind of a pain in the butt but he did much better with it. He was also born with a bilateral cleft lip and palate.
With his lip, I think all you can really do is to keep it taped until you see the plastic surgeon. I know it's hard cause you want things so go as smoothly as possible but accidents happen. It will be ok, just have to get through this week. Where are you from?
Carrie

[Aidyl]

I'm sorry to hear about your trouble Kiwi. My son was born only with a cleft palate. He lost alot of weight after he was born because the hospital didn't give us the right bottle to use and he ended up losing weight because he was working so hard at eating that he'd tire quickly and then wouldn't eat enough. The day after my husband's and my first anniversary we took him for a check-up and were told that we had to put him in the hospital. They then put a tube up his nose (which he HATED) and it made me cry because he was so uncomfortable. It traveled all the way to his little belly. They fed him through that for the time while he was at the hospital. I was then set up to meet with a feeding specialist and she taught me how to use the Haberman. So for the next couple of weeks we fed him with that...which was a HUGE help...and whatever he didn't finish we'd have to syringe through the tube to make him take the rest of it. It was a hard time...but we finally got to the day when the tube was taken out. He was a VERY happy little boy
Because he had lost so much weight from birth. My pediatrician *who is the world's best* helped us get his weight up so that when it came time for surgery then he'd be able to have the strength for it. She didn't really want me giving him alot of other things other than formula in terms of liquids. So he hadn't really had juice the whole time until he was going in for surgery at ten months old. After surgery he was really hungry. And they tried MAKING him drink these juices. I kept telling them that he wasn't used to it and that he wanted his formula. The nurses were really nice and were listening to what I had to say. But the "on call" doctors who were interns or whatever didn't want him on any formula because they said he had to drink the clear liquids. By about the second or third day of not eating I begged the nurses to call the highest doctor they could and tell them he needed his formula. All my son was doing was crying and it really wears on your nerves. Finally one of the doctors overrode the interns and said to give him some formula. I was so thankful. My son watched me fix his cup of milk and when he saw it coming toward him he was shaking he was so excited getting his milk. After days of crying and being so hungry after he drank his milk he fell into a peaceful sleep.
I'm thankful for the medical profession. And for those who have taken years of training to help others. My wish is just that they'd pay a little more attention to what the parents say. I spent every single day with him. I knew what he wanted and what he needed. I understand starting with clear liquids...but I also knew that he didn't ever drink that stuff. And he hated anything apple and that's what most babies start out with. But we got through it. It seemed like an eternity whenever we were going through things with our son and his problems. But my folks and husband kept encouraging me and telling me that it wasn't forever. And that God is in charge.
I know that there are challenges even with a child who isn't born with any problems...but when your little one is born with a hole in the roof of his mouth *or any other abnormality* then your heart aches for them and the days are long and hard. But when you see them smile up at you or laugh at something funny it makes it all worth it. I can't imagine my life without him.
I'll be praying for you Kiwi. I know it's hard. But there's a lot of little blessings each day wrapped up in that little one that you hold.

Lydia

[Kerri]

[b] Here's the email address of a mom with a child that has BCLP and she said if you'd like to talk, to give you her email..I'll send it in a private message for you..