Cleft lip surgery recovery, seems long and drawn out....

[Katie]

My son is 12 weeks old and is going to be having his cleft lip surgery March 8 (almost 5 months old). He has an incomplete unilateral cleft lip and a very partial submucous cleft palate. I was born with the incomplete unilateral cleft lip as well. My mother's description of my recovery compared to what the surgeon is saying about my son's seems VERY different. My mother said that I had stitches for 5 or so days, arm restraints until stitches came out, and took a regular nipple right away after surgery. This was 25 years ago. The surgeon for my son is saying that his stitches will come out in 4-5 days, arm restraints will be worn for A MONTH and a feeding tube (syringe type thing) will be used for feeding for A MONTH. My son will be on cereal and solids by this time and I didn't ask about those things, I wasn't thinking of it at the time of our consult. I can't believe that this recovery will be a MONTH. From what I read here it sounds like a lot of the lip surgeries recovery was just a week or two, max. Should I just trust my own motherly instincts on my sons recovery. The surgeon did say that he recommends these things for one month so that the scar doesn't open up, but that he knows parents don't always follow it for a whole month. It just seems like after a couple weeks I would think that the chances of him opening back up the scar would be difficult. He said that we can't let him roll over because his face may rub up against the crib. It is so upsetting because he will be just learning how to roll over by then and I dont want his development delayed. Any suggestions and advice on all of this? Is this surgeon nuts or what? He is supposed to be one of the best in the Washington DC area (Childrens Hospital). Anyone else use Childrens in DC? Thanks!! You can email me at katieinlow@home.com or post here and I will check back.


Katie

[Angela]

Katie,
Hi, my name is Angela, and my son Zachary was born with a bilateral incomplete cleft lip and palate. He is now 18 months old and has had 3 surgeries. The first surgery at 3 1/2 months was a lip repair. We too were given the arm restraints...they stressed the importance of keeping his hands away from his lip. I was diligent...but still one day while I thought we were both napping...he wiggled one arm out and I heard him cry. Now, I can't be certain...but I think he must have hit his lip. When his stitches came out 6 days later...he had a little drainage in the center of his lip...a stitch had abcessed...and he had a little unusual healing in that area. (But it certainly wasn't the end of the world.) Our surgeon said he would do a revision with palate surgery. At 6 months, Zac had his soft palate repaired...they thought they would be able to repair the hard palate, too...but it turned out to be impossible at that time...so our surgeon also opted not to do any lip revision at that time. Again, we were given the restraints, and told to keep his hands out of his mouth...so this time, I bought sleepers a little bit too big and rolled the sleeves up over the restraints and taped them with silk surgical tape. That worked wonderfull...no escape for Houdini this time. At 11 1/2 months we did our last (most recent) surgery, and they completely closed his palate and put a few little stitches in his lip...with wonderful results. Now, about those restraints...I did keep the armboard-type restraints on until the stitches came out...it was about 2 weeks after the last surgery because they put dissolvable stitches in. After the stitches came out, I switched to those little hand mittens. It worked for me. Of course, do discuss this with your surgeon...our surgeon was great...he always said, "if it works...do it". Good luck to you and let me know if I can be of help.
Angela, mother of Zachary, 18 months, bclcp.
zacsmom98@hotmail.com