I know several of you out there have already been through your child's lip surgery. To be honest, I'm a little worried for our little guy. I want things to be as easy for him as possible, but I know it's not going to be for the first few days. We have asked the doctors most of these, but it always helps to get feedback from people who have already been through it all. Do any of you have suggestions?
My biggest concern is eating. What methods do you recommend for those first few days for feeding? We are currently using the Haberman bottle. Our occupational therapist said he should do fine with this method, but I've seen other ways online.
How have your little ones done with sleeping? Should we expect no sleep for a while?
What ointments have you used for scarring?
Anything I'm not thinking about and should know?
Thank you in advance for your help!
5 comments:
Hi! Good luck with the surgery, please keep us posted.
For Zoe's lip repair we cleared our schedules for a full ten days following the surgery (although we really only needed a week. My husband took off of work as did I, my mother took care of our older daughter at her house. As a result Zoe's recovery time holds a very special place in my heart as a time when all I had to do was focus on her.
One thing I would suggest is the Target Swaddle blanket, we found this was a nice alternative to the arm splints. Although she did learn to wiggle her hands out of it so it is not foolproof, but certainly more comfy. Here's the link: http://www.target.com/Boppy-Swaddle-Happy-Solid-Blue/dp/B000NUGCU4/sr=1-3/qid=1204409555/ref=sr_1_3/601-3275749-5572152?ie=UTF8&index=target&rh=k%3Aswaddle&page=1
Just before Zoe's surgery she started sleeping through the night, the surgery put her right back to being a newborn again, waking every two to three hours, and she cried alot. The one thing that comforted her was walking around the house, which we took turns doing.
The Haberman feeder is fine. Zoe was able to breastfeed before her surgery, but after her repair she refused and only used the Haberman.
Also, bring a couple of big soft pillows to the hospital. I preferred to have Zoe sleep on me on a pillow rather than the hard cold hospital crib. My husband and I took shifts holding her, she slept almost the entire 24 hour stay.
I know it is scary but it will be fine. Ian will be thrown back into the newborn schedule of fractured sleep and fussiness but nothing worse than that.
As for face cream, we used Mederma daily and still do a couple times a week.
Email me if you have anymore questions! sacrebean@yahoo.com
feeding? We continued to use the Haberman...all eating will be slow going regardless of how it is done, so just be patient.
sleeping? :) HAH!!! Adalynn is still working on getting back into her normal sleep patterns. This surgery (and the palate) really throw them for a loop. Just know it is going to be about a week of rough days and nights, but it will get better. Stay on top of meds as much as possible. Don't let it wear out thinking that he'll be fine. It takes WAY to long for it to get into their system when they really start hurting.
What ointments have you used for scarring? We just use Vit. E oil per plastic surgeon's directions.
Anything I'm not thinking about and should know? Like Julie said, take your own pillows. The hospital bed is horrible and you'll feel so much better just holding him. My husband and I just took turns. Take advantage of all the great places that deliver food to CHOA. Ask the nurses station for the binder of phone numbers/menus. Know that it will get better. And before you know it, it will all be past you.
Hi. I found your blog through another family who has a baby with a cleft. My 20 month old was also born with a BCLP. His lip was repaired in two stages and after both surgeries, he ate really well with the Haberman.
We've just rubbed vitamin E on Ezra's scars. Our ps told us that it worked as well as anything. I found that if I rubbed my lip at the same time I rubbed Ezra's lip, he didn't mind it so much. I also made up a "rubbing the lip" song and that seemed to help, too.
We've also found that the sooner Ezra eats after surgery, the better.
Remember to bring your toothbrush, toothpaste and facewash to the hospital, too.
I always think that the first 12 hours after surgery are the hardest, and then it gets better quickly. These babies are amazing and can handle so much. Ezra has always been back to his old self and even his old sleeping habits within two weeks.
Good luck with everything! Feel free to email me if you ever need someone to talk to. I've definately been there/done that!
camiplumb@gmail.com
Hi,
We have had 5 surgeries now (Jimmy has had 3 and Johnny has had 2), and it seems like we learn a new "trick" or piece of wisdom each time and it seems to get somewhat easier.
Here's my advice:
Get as much sleep as you can before. Sleep becomes pretty sparse for the couple days following the surgery.
In regards to feeding, the best thing we've learned (and you will want to consult with your doctor), is to put the boys on plain old infant tylenol rather than the tylenol with codeine. They are still getting the same amount of the tylenol relief, but we found that the codeine really supressed the boys appetites, made them dehydrated and delirious. We asked our surgeon about it after being told this by other parents, and our surgeon said it is common to do.
Bring a pair of slippers and comfy clothes to the hospital so you can get cozy and somewhat comfortable. Also, be prepared to get a bit of blood on your clothes (don't wear something nice) if you hold your baby in recovery.
My boys' surgeon lets us go back to the bottle after surgeries. We were on the haberman too. Bring a few haberman nipples to the hospital as they may not have them there to offer (ours didn't).
There are a number of differnet arm restraints you can get online/make. We found the ones teh hospital gave us to be a bit uncomfortable on the boys and they didn't stay on very well. We found that if there is a strap around the back that pins/velcroes onto the arm restraints, that kept them on (my boys are houdinis when it comes to those restraints and this method finally worked).
My boys are back to themselves usually by 10 days-2 weeks.
We started the lip massaging about 4-6 weeks after the lip repair. We just used plain old vitamin E and it has done wonders to my sons' scars.
Just be prepared for lots of crying and comforting. Hospitals usually have rocking chairs there in the room, and I spent a lot of time there. But when my baby would go to sleep, I would sleep too. Be smart about trying to sleep when he's sleeping so that you don't get exhausted.
Hi,
I found your blog today, and it has been very helpful (especially the comments for this post), as our newest son will have surgery with Dr. Burstein in a few weeks. He has a BCLP- it actually looks a lot like your son's. Thank you for posting your story, it has been encouraging to read about another family's journey that is similar to ours.
Thank you!
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