We just had our first lip surgery on our baby girl!! I can honestly say it was the best/worst day of my life. I know every surgeon is different but for our, she needed to be close to 3 months and at least 10 pounds.
They will usually give you a call the night before your surgery date to give you all the information you need.

•  They tell you when your baby is scheduled for surgery (hopefully early in the morning) 
• They tell you baby can eat last (about 7 hours before surgery)
• What kind of liquids they can have if they get too fussy being without food (clear liquids)
• Prepping instructions (bath the night before, in easy to remove clothes)
• Check in time and where surgery will be located 
• Over night stay arrangements (in the room, hotel, sometimes they may have a house you can rent thats close by) 

So we were told that our surgery would be about 1 hour and 45 min long starting from the time they first take her back. But to our surprise it was about 3 hours and 30 min. You could say we were freaking out by hour 3. But its totally normal for surgeons to take longer than they say. In fact, you probably want them to take longer because it means there really working hard on making your childs face perfect. 

When we were finally able to go see her they warned us that mothers typically have a hard time seeing there little baby for the first time after surgery. The little cleft face you have grown to love over the few months is forever gone and its almost like you have a totally new baby. Even though it was such a blessing to have the surgery done it broke my heart. They say its almost like going through a little mourning process. Remember, having emotions like these are totally normal!! 

When they first wake up they are really groggy and look a little confused. Also very hard to see your baby like that. But luckily they get you right away so your face is the first face your child sees after waking up. They will most limey be hooked to IVs a with fluids and pain killers. 

People always say the 2nd day after surgery is the hardest and its totally true!! The first day they are so out of it they just want to snuggle up and sleep. Don't be too worried if you can't get your baby to take a bottle. They're so out of it and have a totally new mouth it may take a while for them to show interest in relearning how to suck again.  I was very worried that I couldn't get her to eat and that she would die. But the nurses told me that as long as she's hooked up to fluids she is getting the food she needs. They also will not let you out of the hospital till your baby is able to eat on there own so don't stress too much on getting them to take a bottle. 

Some side effects of the medicine is they will kind of develop a raspy little cough. Totally normal too. Make sure to have the nurses keep up on there pain meds because there is nothing worse then having screaming baby in pain wiggling in your arms. From all the meds they give your baby it is not unusual for your baby to become a bit constipated. If this happens they will probably give your baby a suppository. I would make sure to buy some when you get home because it takes a few days to get everything moving again. 

They will usually place a nose stint in your childs nose that is stitched in or taped on. Its there to shape their nose while the healing process is happening. Its important to keep it clean and clear for better breathing. The best tool in the world to get all those boogers out that I have found is a nose sucker from Walmart. It looks like this. They also sell extra tips for the end if you need a different size.

Expect swelling and bruising!! More often then not your baby may get a little bit of a black eye from surgery. For us it took my baby about 5 days to get off all pain meds and get back to her fun loving self. But every baby is different. The hospital should send you home with two little arm restraints called "No Nos" make sure you have them because when there little hands fly up and hit them selves in the face, expect a lot of tears :( Just remember how strong your little baby is and just how strong you are becoming too! You have come a long way so far. There will be more obstacles along the way but many have got through it and so can you!

Closing the Cleft

So there are a couple ways that you can minimize your babes cleft before surgery. One way they close the cleft lip is taping. Taping your child is probably the easiest thing you will need to do to get your child getting ready for surgery. The tape we found worked the best for us was the Nexcare Flexible clear tape. It has a stong hold and is easy to rip in half to the sizing you need.

So to start you will need a long strip of tape. Rip it into 3 thinner pieces. Place your hand on your child mouth pushing there cleft lip together till it touched. place the tape over it so it will hold. I always added a extra piece of tape on the ends so it won't slip at the end of the day . Here is a good example of how it should look

NAM (Nasoalveolar Molding Device)

The NAM is used for both unilateral and bilateral cleft babes. The NAM looks like a big retainer that is placed in the roof of your babes mouth and held together using tape. The NAMs main focus is to move the palate closer together while also shaping the nose. The NAM is a very big commitment. As hard as it is to tape up your babes face and put in a annoying retainer in there mouth it is so worth it in the end. It is easy to remove and clean and if your baby can get used to it, it also improves on feedings. There are different styles of NAMs out there it just depends on the surgeon you have and the type of cleft your child has. Here is an example of one my daughter had.

First they will take a mold of your childs mouth to get a coustom NAM for your child. WARNING your child will hate this part but keep in mind it does not hurt them its just a clay they stick on the roof of there mouth and it just feels a little uncomfortable. After maybe 2 weeks later, they make the NAM. It Should look like a clear retainer with one or two prongs coming out the front so you can hook it with rubber bands to your child's face. 

*First tape your childs cleft lip together like normal.

* Then you will need two long skinny pieces of tape and two dental rubber bands. 

*Then place Rubber bands on the end of the tape and fold the ends together so it will hold the rubber bands

                                         

*Place NAM in childs mouth 

*Loop rubber bands around the ends on the NAM and pulling them tight and place on childs face.             

                                                                   

Later they will probably add a nose shaper to improve breathing and get the nose to the right shape it needs to be for surgery. 

Spitting up and mouth sores

Every baby spits up. But with cleft babies, it's a little different. First you need to find a formula that work well with your baby. I had a doctor tell me that they have never seen a cleft baby who didn't have bad acid reflux so I would pick something sensitive and gentle. My personal favorite was Enfamil Gentlease for gassy and fussy babies. When cleft babies spit up its not uncommon for the milk to come out of their nose. Don't be alarmed when this happens. It doesn't harm the baby in any way, it probably just more uncomfortable.

Mouth sores are very common for cleft babies too. Depending on the cleft palate, the nipple from the bottle you are using will put pressure on the palate where babies without clefts don't. This was the worst couple days of my life with her so far. I was so worried that it was thrush because she had whitish pockets on the roof of her mouth. I could tell it was very painful for her to eat and it broke my heart. We took her to the doctors as fast as we could and they just said its sores from the nipple rubbing and putting pressure on her cleft. They told me that it would soon develop a callous and she would be able to eat again pain free soon enough.
I didn't believe them so I took to the blogs and found out that everything he said was true. But it was so hard for my little one to eat. So I would put the nipple on both sides of her mouth, avoiding the sores and it was tough but we were able to feed. As hard as it is its important to still try and feed them over the sores so it can harden up. It took about a week before things were back to normal. But switching to a softer nipple helps a lot. Here is a example of what they looked like.

Meet and Greet

So to help you pick your surgeon, they will often have a meet and greet. You are able to sit down the the surgeon and talk about the surgical plan and the procedures for your baby. This is the time to ask all the questions you have. Here are some good questions to ask:

1. When do they operate on my baby?
2. Where is the surgery done at?
3. Can you see any pictures of there work (keep in mind they will probably show you the best ones but its still good too see results of there work?)
4. Ask if there is any support groups you could join?
5. Ask for the timeline of surgeries your child will need to have?
6. Ask about insurance?
7. How long have they been practicing?
8. Do they have a team of other doctors for your babes needs?

Make sure you feel comfortable with the surgeon you have picked. Its good to feel like you can ask questions in a safe environment because trust me you will have questions. Once you have chosen your surgeon the next time you will most likely see them is about 2-3 weeks after your baby is born to give you and the baby some time to bond and adjust.

Feeding a Child With a Cleft

Everyone told me that breast feeding a child with a cleft was next to impossible. Pumping was a option, but with everything you have to go through with figuring out how to even feed your baby and wondering if they're getting enough food, pumping became very overwhelming. But me being very stubborn, I tried and I tried to breast feed my baby. I got her to latch maybe once for 3 seconds. And for me not being able to breast feed my own child broke my heart. I felt like I would not be able to connect as well with her if i didn't breast feed. But women all over the world bottle feed and everything turns out just fine. In the end it was more important to me that my child was well fed and happy.
So I know of three different kind of bottles out there for cleft children. Pigeon nipple with one way valve, Mead Johnson bottle, and Haberman Feeder. For me personally I liked the Pigeon bottles the best. But when it comes to picked a bottle it all depends on what works for your baby. I wouldn't worry too much about buying a lot of bottles before your baby gets here because you never know what ones she takes too the best.

Mead Johnson bottle -Oldest bottle made for cleft babies. A squeeze bottle in which you place the nipple in the babes mouth and squeeze milk into mouth till you get the rhythm of breath, squeeze, swallow

Pigeon Bottle - The nipple is almost two sided. On the top it is made of a harder material. It is to be placed at the roof of the mouth covering the palate. And on bottom is a soft material so when touched lightly milk come flowing out and into the mouth. The nipple comes with a small valve which is places at the base of the nipple. The function is to be able to hold milk in the nipple the whole time making it easier to access milk so the baby does not get frustrated with not being able to suck. 

Haberman Feeder- Also a squeeze bottle but is made to form around the cleft better. You are able to control how much milk flow goes into your babies mouth by aligning the indicated marks with your fingers. Also made with a valve so milk staying in the nipple for easier sucking access for baby. 

    Most hospitals will give you one bottle of either the mead Johnson bottle or the pigeon but most likely not the Haberman because it is the most expensive of the three. All bottles can be found on Amazon but beware, they are hard to find. 

My Story

For most people the last thing they think about when pregnant is my baby might have a birth defect. I know for me it felt like my whole world was turning up side down. I was going in for my 20 week check up with my obgyn with my husband. I remember as we were sitting there and the nurse was giving me my ultrasound she went silent. In my head I thought "what are the odds anything is wrong? my baby has been health and perfect all this time so there is no way anything is wrong" but still her reaction scared me a little but so i asked her if everything looked normal and all she said was "the doctor will go over your results" i could literally feel the hair raising on the back of my neck. We moved to a different room and waited for the doctor to come. He came in, sat down and told us the bad news. Our baby has a cleft lip. At first I didn't believe it. Not me. This couldn't happen to MY baby. Me and my husband left the room barley speaking. It wasn't till we got into the car that the tears started to flow.
Back tracking a little bit. My dad through out the years had been involved with a organization called operation smile. It was founded by a couple name Bill and Kathy Magee in 1982. Operation smile goes all around the world helping children and adults who were born with a cleft live a happy normal life with the help of surgery. Ever since I was little I knew bout operation smile because of my dads involvement. I would try and raise money for the kids who were waiting for surgery but didn't have the means to pay for it. I had sibling who went on missions (1-2 week trip to a country to help operation smile), I was involved with the operation smile club at my high school, i thought i knew all about cleft lip and palate but to be honest I never really gave it too much thought until I found out we would have a child with one.
I called my dad on the way home letting him know the news. Like I expected he was shocked but then he told me by some chance he was heading up to a meeting later that day with the founders of operation smile and we both decided that it would be a good idea if I joined. As we sat down with bill and kathy I could barely get my words out I was so emotional. But instead of jumping into telling me all about how this was fixable he slowly took my hand, looked me in the eyes and asked me how I was doing. He told me he understood. He really took the time to connect with me and in doing so I knew right then and there that I was going to get though this. I had the support of my loving husband and family and now the support from bill and kathy who made it there life mission to find and fix children who had the same exact condition that my baby would have.
The next step for me was to go to the Fetal Medicine Group for a 3D ultrasound to see in-depth, what kind of cleft my little baby had and to see if possible if she had a cleft palate also. I highly recommend going to a place like this just so you can get as much information you can on the condition your child's cleft is. They told me it looked like a unilateral cleft, gave me a packet on surgeons around my area and sent me on my way. All I could do now as let my little baby grow healthy and strong until it was time to meet her.

Cleft lip and palate

Different kinds of clefts: Cleft of the soft palate, cleft of the hard palate and soft palate, unilateral cleft and bilateral cleft.

What is a cleft lip: A cleft lip a is a opening in the upper lip on one or both sides. Unilateral cleft is just one side and bilateral is both. The opening of the left can go all the way into the nose (usually indicating there is a cleft palate) or it can stop half way up the lip. 

What is cleft palate: Is a split in the roof of the mouth. It can involve the hard and soft palate depending on the cleft. 

Soft and Hard palate:

                               : 

The roof of the mouth is known as the palate. The hard palate is the front part of the roof of the mouth, and the soft palate is the back part. Because there is a split in one or both of the palate ear infections and hearing loss is common. Both treatable. Fluid builds up in the ears from eating and normal mucus build up that may need to be drained by tubes. It is also very common for cleft kids to not have a uvula because it is split on both sided of there mouth from the cleft. 

What causes cleft: Doctors can't quite give an exact reason as to why a cleft happens. It can be just random or it can be linked with problems with genes passed down from one or both parents, drugs, viruses, or other toxins can all cause these birth defects. Cleft lip and palate may occur along with other syndromes or birth defects. Pollution is known to be a big factor in cleft lip and palate. Also positioning of the baby in the womb when the mouth is developing can cause a cleft. They say if the head is down, pressing there chin to there chest it can push the tongue up and get into the way of developing the palate and lip. 

How often does this happen in the United States: 1 out of 700 babes in the United States are born with a cleft lip and palate. More boys than girls are born with a cleft lip and palate but more girls than boys are born with just a cleft palate. 

Treatment: Surgery, at the appropriate age can repair a cleft. In fixing a cleft you will need a team made of the following people.

1. Craniofacial plastic surgeon
2. Otolaryngologist, an ear, nose and throat specialist 
3. Audiologist
4. Pediatric Orthodontists 
5. Pediatric Dentist 
6. Speech Therapist 
7. Social worker