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Surgery Number 1

Monday, July 18, 2016

 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

Saturday, July 16, 2016

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. 
 
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