Scared...

[scaredmother]

My son was born July 9th with both cleft lip and palate. He had his surgery to repair his lip when he was just 4 days old. His PS was great. Everything went really well and he came home 24 hours later. He just turned 6 months old and is getting screened for this palate repair on Wednesday. I have to say that I am very scared about the upcoming surgery. With his first I was scared too, but now I feel even more scared, and I think it's because of the bond we now share. And I'm worried about the after math more now because he's so playful, and EVERYTHING goes in his mouth. Luckily he hasn't started crawling yet, so I don't have to worry about him being stuck in one place, he used to that. I read so many ppls letters about feedings after wards and weight loss and things of that nature that I think I've gotten myself even more scared then I was before. I guess the point of all this is that I'm wondering want is that first week really going to be like? I'm sure it's different for everyone, but just some sort of knowing that things are going to be ok would help.

[mia's mom]

I understand. I'm scared too. Thanks for writing this, I was planning on posting something similar myself. My daughter will be 8 months old the end of this month. She has an appointment on thursday and I KNOW the surgery will be scheduled then. Some days its tough to hold it together and somedays I think its going to be just fine. This message board is great because people post their after surgery stories and it seems like the first week or two is tough, but then it gets better and then its great. Hang in there. Sandy

[Hilla]

It would be so easy to say, don´t be scared. But I know from the experience that of course you will be. I was. (my daughter was born with UCLP). She had her first surgery (lip) at the age of four months and the palate surgery at the age on one. I just want to tell you, that everything will be okay!!! Keep us informed.

-Laura

[jacksmom]

You're right, everyone's recovery stories are different! My son had his palate in April 2007, at nine months. I have to admit that when they brought him back from surgery, I was a little overwhelmed by the amount of swelling and blood. No one really warned us about that! We are still unsure if it was all from the surgery, or an allergic reaction to the morphine. As soon as they brought him back, he took 3 ounces of pedialytle from his Haberman. After that, he didn't want ANYTHING near his mouth! We could get him to take little sips of juice from a syringe, but that was about it for the first couple of days. I asked to stay an extra day in the hospital, with an IV so that he wouldn't get dehydrated. After we got home and got him OFF of the tylenol with codeine, he did much better. Alternating the regular tylenol with Motrin seemed to control his pain the best. (Be sure to ask before using Motrin, some docs don't like to use it after surgery)
The first week was pretty tough. He would only sleep like 45 minutes at a time, and then just wake up screaming. I think a lot of the trouble was from the anesthesia. After day 10, he was getting back to normal. I felt like he wasn't eating enough, but then when we went in for our follow up, he had actually GAINED weight! I was shocked!
In all, it was a long 2 weeks, but you will mak it through, and looking back it is already hard to remember how bad it was! It seems like forever ago! I just kept reminding myself that I was doing what was best for him! Hang in there! You will be on the other side of this journey very soon! Hope i didn't make it worse with too much info....I just feel like no one prepared us for what to expect! Good luck and keep us posted!
Allison

[heather]

Everything will be just fine. I was so nervous when Eyson had his surgery done. Both of them, actually. He was born UCLBCP. You know, the first week after his palate surgery wasn't that bad. I think I had myself worked up so much with worrying about it that I made it ten times worse than it actually was. With everyday that went by he used less and less pain medicine and ate more and more food. He even started taking his bottle again and actually asking for it. So it's easy to say relax, everything will be just fine...but you're a mom and we just don't operate like that. It's our baby and we're going to worry about them. But it will be okay. Trust your surgeon. And you can always ask any of us on here if you need some advice.

[mrobida]

My daughter was born July 1oth, so she is just one day younger than your child. We just went for our pre-surgical consult yesterday and found out that her surgery is going to be March 4th. From what I've read on this site, it sounds like the first couple of weeks are tough but then it gets better after that. The one thing I am concerned with is that her surgeon won't let her drink from anything except a real cup (no bottle or sippy), so I, too, am concerned about getting fluids in her. But I figure that we will make it through just like others have. She has also not been gaining well lately, probably due to being sick on/off the last couple of months, but we are also experimenting with changing her reflux medicine. Does anyone know, on average, how much the babies usually lose after surgery? What are others experiences?
Otherwise, we are looking forward to the surgery with anticipation and hopes that her feeding will improve once the surgery is over. For those that have already had the surgery, what are your experiences with learning to use a bottle/cup and eating solids after surgery. How long is the process of learning to suck?
This site has been a great source of information and a great source of comfort in hearing other stories of people who are going through similar experiences. Thanks to all and best wishes to everyone with upcoming surgeries and those with upcoming births.

[scaredmother]

Thanks for all the responses. Andrew's pre-surgery consult is tomorrow, so hopefully I'll have all my questions answered.

Here's a link to a pic of my lil guy.

http://cid-2c882a620212aaa9.spaces.live.com/photos/

[scaredmother]

The doctors appt. today when great. I already feel alot better. He said Andrews lip look great and was ready to move forward so we went ahead and scheduled the appt. His surgery is going to be Feb. 7th. Keep your finger's crossed.