My Baby Is Having Surgery.

A friend of mine has 2 cleft affected boys. She shared her experience through this blog. http://www.cleftnotes.blogspot.com/

Check it out & see if it helps you with your journey. Good luck.

My daughter was 5 months when she had back surgery. The hospital chaplain came and prayed with us prior to her surgery. We knew our daughter was going to be fine because she was all smiles and rolled over for the first time that morning.

They gave her something to make her a bit loopy. I rode on the bed down to the OR. The hardest part was handing her off and watching the door close.

Father in heaven, I know that A. is nervous about her son's pending surgery. Lord place your loving arms around this family. Give them the courage, strength and support this family needs. We pray your wisdom through the hands of the doctors. Thank you, Jesus. Amen

I went through the same thing when my twin boys were 3 months and almost 5 months. We just had their third surgery, and the boys look wonderful.
I know it is hard not to be nervous, but just trust the Doctors as much as possible and everything will be fine.
Plan on the surgery taking a little longer than what they say. Also there will be swelling once your child is out of surgery, but within a few days it goes down. I can tell you that the baby will not remember anything, and things will be like they were before after a couple of weeks.
And like my husband and Dad (who both have cleft lips) say it will make the baby a stronger person when they grow up.
Hope this helps!!! If you have any questions, please let me know.
Warm Thoughts,
T.

We went through this with our daughter almost 4 years ago. Due to her cleft not being real serious, we were able to wait until she was older to have her surgery. But surgery on a child is scary never the less. By chance are they doing the surgery at Children's in Seattle or Mary Bridge in Tacoma - either place would be perfect? We had her surgery at Mary Bridge in Tacoma - they are wonderful there. Dr. Ehret was her surgeon - he is fantastic. We have a 15 month old son who also was born with a slight cleft lip. We have no worries about taking him to Dr. Ehret or Mary Bridge. If you are a faith based person - pray. Even if you aren't - pray and know and believe that God will take care of your baby. It will help bring you peace and comfort. The doctor's that do this kind of surgery are superb and have - unfortunately lots of practice. Which is good for our special kids! Good luck - I'll be praying for you and your baby.

No I have not but I will have you in my prayers this week and next. Please let us know what has happened.

A.,

I don't know whether it is the surgery or the results that are making you nervous. My daughter had to go through surgery at 4 months old for another problem. We were in the hospital for two days. I was really nervous and worried before the surgery because I didn't know what the process was in the hospital. We had the surgery done at Children's in Seattle and they were wonderful. She has to go through another surgery and I am not so nervous this time, due to knowing the process at the hospital and what to expect when we get there. Don't be afraid to ask all sorts of questions to get yourself as comfortable as possible with the process.

I have been through that with my son who is 5 now. He had a palate repair and lip repair and about 12 other surgeries all heart related (4 open heart). It's tough to send a child into surgery but with a lip repair, you get to go home the same day and you don't have to live at the hospital for a month of recovery! The hardest part is keeping their hands off their mouth with the restraints!

My friends doctor and them clean the lip every day with hydrogen peroxide so that it never scarred. We didn't do that but it would have been good advice. His repair was amazing though! Good luck to you! If you are seeing Dr. Wang, he's great!

Sounds like there are lots of kiddos out there that have had surgery of one kind or another. A friend here in AK, had a boy with a cleft lip and also had the surgery done at Childrens in Seattle. I think the kids handle it better than the parents! Our son had an undescended testie when he was born and had surgery when he was 11 months. It was just a day surgery, but I was quite nervous. we had the surgery done at the Children's hsp in Portland. They were great! they know how to handle kids and parents! both sets of grandparents were there also. when my hubby and i were in pre surgery, there were all these new toys, so Carson was entertained. The drs came in to talk to us and picked him up...he's never been afraid of strangers... and as the anesthesiolgist was taking to us, the Dr. just took him out of the room!! no crying, on his part anyway! =-) a friend dropped by while he was in surgery so we had lunch with her, that helped time go by! Then when he was in recovery they let me go in and hold him. he was still asleep, but puffy from the anesthsea. and all the tubes running from him... i just cried! when he came out of the anesthesa he cried and thrashed around alot. i nursed him as much as he'd let me and just bounced him. that was probably the hardest because it seemed like nothing was working. just remember that they don't feel good and they don't know what they want either! after we left the hsp he was a bit clingy, but otherwise great! at that age and younger they aren't going to remember much, so i think it is much harder on the parents!
Good luck! it's ok to cry and worry... that's part of being a mom!

I have a dear friend whoms third baby was born with a cleft lip and palate. It was more than stressful, but he has had two surgeries and is doing extremely well. He is one now. You cannot even tell he had this issue. He will have more surgeries(because of the palate) in the future but he is happy and healthy. Babies are wonders of nature and it's hard not to worry soo much. I bet your baby will do fantastic! Lots of Love!

Oh god i am going through this with you... my baby was born with a cleft lip and palate.. and he is also having surgey april 23rd to repair his cleft lip i am really nervous and i just wrote something up on here for advice on feeding babies with cleft palate let me know how his surgery goes please

J.

A., Although neither of my sons had cleft palate repairs, I worked on a Pediatric surgical unit at Children's Hospital in Pittsburgh for quite a while and many cleft palate repairs were done there. The children did well and the repairs had pretty amazing results. All parents are nervous about surgeries for their children, but I want to assure you as much as I can, that this particular surgery will go well.

I haven't been through this particular one, but have 5 grown kids and 14 grandkids and have been through a few surgeries and my youngest was hospitalized twice with phnemonia...the first time was when she was a week old...I sat in her room day and night for the entire week she was in there, she was barely able to breathe..it was very difficult thing to go throgh in all cases...I believe in the Power of Love..some call it God and other names..Just know in your heart all will go well and I will believe the same thing..with you, when two are more are gathered in his name(in the name of Love) it is very powerful...so now you have two and I'm sure many family members...be positive thinking, and think about how hapy your beautiful child will be after it is completed as they grow up and are around other children...

I was a stay at home mom too. and I am very close to my children because of it and now very close to all my lovely grandchildren...I commend moms who Love and are content with being there for their children...Many blessing to you and your experince you are about to go through, C.

I have not gone through a surgery with either of my children. The most we have done is having to put our 8 month old son (at the time) to sleep for an MRI and it wasn't easy mentally. Is your 5 month old having surgery at children's? They really are wonderful there and very supportive. They did a great job when we took our son in.

You'll do great!

My older son had seven surgeries of various sorts before he was 8 years old...it was never easy or fun but he was okay every time. As long as you trust your doctors, spend your time trying to do something to take your mind off things...of course it'll be there anyway, but you can do other things too. We had another son so we took him out for lunch and to pick a special toy for the sick kid (that was actually his little brother's idea), I did a LOT of book puzzles. And pray...talk to God...He listens and He cares.

Well I haven't gone through a cleft lip surgery but my son was born with Spina Bifida and had a big hole in his back and so he had to have surgery at just a day old. Everything went fine and he came home after only seven days in the hospital. The scariest was seeing all the tubes and IV's in his body. Which he will never remember. So, I say as long as you are confident in the doctors and just know in your heart that your baby is going to be fine. My son also had about six more surgeries before he was 3 months old because he developed Hydracephelus and what was amazing to me was that he recovered so quickly from all of them. I'm sure your baby will recover just as fast. Good luck and try not to be so nervous...your doctors know what they are doing!

My baby girl had open heart surgery at age 5 mo. Scariest thing in my whole life. Everything turned out fine. She is 4 yo now and is doing fine. The worst part was letting her go out of my sight. I had a lot of prayer support and had great surgeons that answered ALL of my questions. I hope this helps you. I will keep you and your little one in my prayers.

A., I so understand how you feel. My son had his first surgery at three months old for bilateral cleft lip and palete. It doesn't get easier as a parent you are always worried when they have a procedure. Please know that COH has a GREAT cranial Facial Center and the team dones a GREAT job. If I can be any help just let me know. B.
____@____.com

It is always hard when our children have to have surgery, especially when they are too young to speak up. I too had a little one who underwent surgery; at 2 yrs. she was able to attend the "class" for kids about what to expect. My husband and I were there to support one another, but I do remember what the doctor/nurses said. Kids are extremely resilient; they heal quickly and do not seem to remember any of it later. (Ours doesn't.) I was more concerned that my daughter would pick up on my fears so I did a lot of reading to her from her favorite books and ones about being in the hospital. I agree that the more YOU know about the process the less anxious you will be.

A friend of mine in CA daughter had the same surgery and it came out beautifully. You can hardly tell she had a cleft lip as a baby. I doesn't effect her speach even today and she is 6. I was always taught to look at things with a positive outlook. I know it is hard to do when it is your child having surgery. But God always has his reasons. My neice at the age of 5 was told she had diab. type 1. She is now 13 and has graduated to a pump instead of shots and has educated each one of her classes about it. I am so proud that she has turned a - to a +. God works in strange ways, we must keep our faith. I will put your little one in our prayers if you dont' mind. Every little bit helps. C. B.

I had both of my feet surgically reconstructed when I was a kid. (It took over ten years - so I definitely remember the later operations.) I remember that the pain didn't seem as bad when my mother was there. She did used to tell me that she wished she could take the pain for me (which I didn't understand until I became a mother), but she DID help take the pain just because she was there and she cared. She also made certain the hospital personnel treated me properly. (I have no memory of it, but apparently when I was about six months old the tech had a hard time finding a vein for the IV. My mother (the most polite and passive lady you could imagine) gave him two tries and then ordered him out of the room with instructions to send someone in who was more experienced.)

I don't know if this helps you. I was just hoping to let you know that your baby will be fine - as long as she has you to hold her and comfort her. This will be MUCH harder on you than it will be on her - she won't even remember this. She'll just know that her mommy is with her and that's the only thing that will matter.

I wish you and your daughter all the best!!!!

I know how nervous you are. My baby had surgery (a different one though) when he was 28 days old. I could barely stand to hand him over to the OR nurse. But, I have been the patient of one of the leading plastic surgeons around here (Kathleen Waldorf) and she is the most amazing person. I am sure her colleagues in the area are too. There are so many successful cleft lip surgeries that this is a wonderful thing you are doing for your child. You will remember it, they won't, and they will grow up with a normal looking and functioning face. I will be thinking of you!

Hi A. -
I see you have a lot of emotional support from other posts, but I have a few practical pieces of advice.
My daughter was born with her esophagus ending in a "blind pouch" - closed up, not connected to her stomach. She was immediately flown to St. Mary's hospital in Rochester, MN. (We were living in WI at the time.) The initial surgery at two days old was scary, but I feel the harder times were when she was older and had occasional procedures to have the scar tissue stretched out so her food would go down.
They were harder because she knew more what was going on - being away from mom and dad, people with masks on, bright lights, cold environment, etc. We made it clear that one of us was going into the room where she was put to sleep. The doctors and nurses initially gave us the, "No, parents can't come because of, um, well, it's too hard that way" or "she might throw up and aspirate it and need resuscitation, and you can't be there for that" or some similar ridiculous excuse. But we persisted, and it was hard for us to watch, but helpful for my daughter for us to be holding her and be the last person she saw as she went out.
We had learned from the first surgery that she was sensitive to morphine, so we made that clear to everyone, especially the anesthesiologist. (Make sure you meet him/her before the surgery, and have him explain what he'll be doing and what you should expect when your child comes out of the anesthesia.)
Your baby will probably be sick to his stomach from the medicine and very upset all day. Be sure you are at sainthood level with your patience, and don't be afraid to take a break periodically so that when you're there with baby you're always at your best.
Your 4 year old will need to know that younger sister/brother is going to need some extra mommy-time after you get home. My daughter was clingy for about a week after her procedure at that age. Don't spoil, but do hold and love a lot! If you can call in favors from friends and family, now's the time. Ask one person to bring a casserole for the oven one night. Ask another to take your 4 year old for the day/part of the day. People like to feel helpful!
We will pray for your baby's healing before bed tonight, and for your strength!

A., I'm so sorry you have to go through this with a little one. My son had tube put in when he was 18 months and I thougth I was going to lose it. I can't even imagine something so major. I personally don't have any experience with this. I am newly pregnant and have been visiting IVillage message boards that have been a wonderful resource for me. I found one on CLeft lips and Palates so I thought I would pass it along. It's a really great place to get some answers when you dont' know who else to ask. I wish you and your new little one all the best.
http://messageboards.ivillage.com/n/mb/listsf.asp?webtag=...
W.

Hi A.,

I know just how you feel. My daughter had her first set of eye surgeries when she was 4 and 5 weks old. By the time she was 14 months old she had a total of 6 surgeries. She was born with bi-lateral cataracts. Even though she was not legally ours yet(she was in foster-care)it made me very nervious and concerned for her well being. She had surgery at Children's Hospital in Seattle. I don't know if your a believer in God, but my husband just prayed for saftey for her and knowledge for the doctors and staff. This was also a BIG comfort for us.
All though you baby is having a more in depth surgery,you to can trust in the Lord and know that he is in control.

D. M.

I haven't gone though it, but sending you the best of luck with it all

Hi AmyMy first born was born with a cleft lip and I thought I would never make it through his surgery at 4 months old.  He was a trooper and did great.  First thing is make sure you have someone to wait with during the surgery who can hold you in conversation.  That made the time fly by and before I knew it he was out of surgery.  They really do recover as fast as the surgeon tells you.  I thought they were insane when they said he could nurse after surgery but he wanted to and didn't seem to bother him.My son is now three and you can barely see the scar!  Please email me if you need ANYTHING!  It's so common that some people don't realize how scary and hard it really is on parents.  He'll be fine but your still a mom and allowed to worry.Best of luck and please don't hesitate to email me for ANYTHING, even just to talk :)____@____.com

Hello A.,
My daughter was born with a cleft lip and palate almost 36 years ago. The technology has come a long way and now it is much less complicated than in 1972. You will be amazed at how different your child will look. You did not say there was a cleft palate so feeding is not much of an issue. It won't take very long for this prosedure to be done, and the result will be amazing for you!! Please don't be nervous or scared, as the outcome will be so great. Good luck and make sure you get a few before and after pictures to show him/her when they get older!!

My nine year old has been through numerous surgeries throughout the years and I wanted to share a couple of coping skills I have learned. Her first surgery was at 6 months and was major stomach surgery.
I recommend making the actual surgery day a bit of a party. We had our friends and pastor there, I had bought my favorite snacks and we played Apples to Apples during my daughters last surgery.
If you are going to have to stay overnight, bring high protein snacks! I had a hard time making it out of the room because she wants me when she doesn't feel well.
I know it is a scarry time, but we really have had positive experiences as far as them treating the child well. Don't be afraid to ask questions and make them explain things that you are uncomfortable with.

Just wanted to say your daughter will be in our prayer for her surgery. If you need anything just let me know!

I have a friend who's son just had cleft lip surgery not too long ago. If you'd like to talk to her you can email me and I will pass it to her. My email address is ____@____.com

My son had surgery right after he turned 1. His surgery was at Overlake. We had the 1st appointment of the morning which was early but helped. Everyone was fresh and ready to go and since they don't always have little ones at Overlake, he was truly a special patient for them and they were so kind to all of us. They put a little gown on him and gave him tiny little bootie/socks. They let us stay with him until it was time. The nurse carried him back. Everything went smoothly. As soon as he started to wake up a bit, they called us back to hold and rock him. At that point he wasn't fully awake yet. But they wanted him to have someone familiar when he did wake up. I really appreciated that. The comments that people have said about children healing quickly is so true. That is partly why we had his surgery done at such a young age. His body recovered so quickly. In fact, he was up and about later on that afternoon. Your baby is in good hands and I'm sure that everything will go well. Take care and God bless.

My parents know what you're going through. My brother was born with a cleft lip and palette and that was back in 1967 when they hadn't perfected the surgery technique. He had several surgeries and they always have a special place in our "family story". It sounds like my brother suffered a lot as did my parents (of course) but he couldn't eat or suck at such a young age, so it was terribly difficult. The good news is that he got top notch, pioneering surgeons and so much tender loving care and I think that might be the reason he is such a wonderful person to this day...you know the old adage that it doesn't matter what happens to you but how you deal with it that matters.

He is a sweet and wonderful husband, dad, brother, son, friend etc...it's like everyone has always loved him even though he was not outgoing or anything. In fact, he has a very quiet but thoughtful approach to life. He also had hearing loss as a result of the cleft palette, but again, it hasn't held him back much. He even loves to sing and play guitar.

All the best, A.. I'll pray for you and your baby.

Oh A. I'm so sorry you're facing this. My son was born w/bilateral microtia atresia but they don't do surgery for that until 4-5 y/o based on the doctor we've chosen in NY.

I will certainly be praying for your strength and comfort, your child's swift and uncomplicated recovery, and the best possible surgical skills of the doctors performing the procedure. Would you mind sending me a private message with your child's first name? I know that G*d knows but I like to be specific. {{{{{{hugs}}}}}}}

C. WAHM to 4 y/o virtual twins (one bio/one adopted w/bilateral m/a)

My mom is a retired RN, who did volunteer work for "Operation Rainbow" (a non-profit organization that goes to 3rd world countries an performs this operation on hundreds of kids). My mom says that it a gratifing experience to be able to see your child go from having a cleft lip and having it repaired. Depends on what hospital you are having it done it, babies bounce back and heal very quickly (my mom also worked at Children's Hospital (Canada) for 20+ years in the Operating Room), so it depends on how the nursing staff are also used to dealing with kids. If it is at a children's hospital, the nurses usually cuddle with the kids, comfort them, they just know how to deal/be with kids no matter what the age. Hope this helps calm the nerves.

My son was born with a Congential Diaphragmatic Hernia (little to no diaphram). We knew before he was born that he had this, and we found out so early that we had 5 months to prepare. When the time came for him to be born, and then an hour after he was born-to be taken to Childrens (that was always the plan)-it all wasn't easy. He had 2-3 surgeries, was on different life support systems, and all of it wasn't easy. Having his diaphram repaired had to be done in order for him to survive, and it was a big surgery for us. A month to 5 weeks after his repair, he had to have a stomach tube put in because he wasn't eating (was on life support for the first 6 weeks of his life, and couldn't suck and swallow-it was a long story). I was more nervous about his stomach tube being put in than I was about his diaphram being repaired.
My Faith, Prayer, and support from friends and family is what got me through it all. Without my faith in God, I would have been a basket case. If your son is going to Childrens in Seattle-they are the best of the best. Dealing with children and babies is all they do. They are very sensitive to your baby, and they listen to you. They will take you into the recovery room to be with him, just before or just as he wakes up, so you are there with him. He will be on alot of pain medication, and make sure you follow the pre-surgical instructions to the letter. You don't want him to throw up after the surgery. He will be loopy or woozy right after surgery and it may last for 3-5 hours. Every baby is different.
My son had 2 more surgery's when he was 1 1/2 and 4 1/2 years old. Both procedures were minor, neccesary, and outpatient-and handing him off was still hard for me. Even though I knew he was fine, and he would be fine-it was still hard.
My son has a little beanie baby dog, his name is Bruno. It was given to him when he was 2 days old. It was always in his little bed at Childrens. Bruno helped propped up his breathing tube on his ventilation machine, Bruno went with him with all of his Surgeries, and Bruno sleeps with him every night, and he is 6 years old now. If he has a favorite stuffed toy or something, give it to them, and they will take it with him. If you take your 4 year old with you-bring stuff for them to do (if you are not going to Childrens). If you are going to Childrens, there are things, toys, books, in the waiting room, but if they have a favorite toy, or something, bring that for them. It's important to include your 4 year old somehow. You can take them to the cafeteria to get a treat, get them a new book or toy for surgery day (if they are going). When the focus is on the child with the health issues, the older one starts to feel left out. We took our older son (there are 6 years between the 2 of them) to the last 2 surgery's. He understood what was going on and why, and it made him feel like he was part of it. If you have a friend or family member who will take your 4 year old on surgery day though, that would be better-then your 4 year old had a special place to go on that day. It would also be a good thing if you talked to your 4 year old about what is going to happen to the baby, and that he/she is getting his lip fixed.

Love being a SAHM (but I have my moments) of 2 fabulous boys ages 12 and 6. A a super supportive husband, who is the best dad in the world.