How much does surgery cost?

Of course costs will vary from child to child, but here are the break-downs from a couple of parents:

Hi! I know that costs vary wildly across the country and with length of hospital stay and severity of surgery, but here's a basic breakdown of our cost. [Our child] had a wide cleft that was repaired at 25 months (she was adopted at 23 months, that's why the surgery was later than "normal". It was her first and only repair and she had never had a prosthesis or any pre-work done. She was in the hospital for almost exactly 24 hours door-to-door.

Here are the pre-insurance costs at Utah's Primary Children's Medical Center:
Anesthesia - $1200
Plastic Surgeon - $2900
Hospital for 24 hours (OR, room, nurses, meds, oxygen, etc) - $6300
ENT (ear tubes, both sides) - $950

We had surgery on my boy's soft palate in December and are finally starting to get the billing information now. Ours was a little more money because he had ear tubes put in, a tiny lip revision and an additional day in the hospital because he refused to eat, but our total was $8127.94...

The room and board for 2 days was $4332.36
Pharmacy was $484.66
IV Therapy (for longer than normal) $97.05
Supplies, etc... 183.73
Operating Room Procedures were $2157.87
Anesthesia was $282.32
and Recovery Room $589.95 (he had to stay there awhile because they couldn't get his pain under control).

How do I soothe my baby after surgery without a binky?

Here is a conversation from the Kids with Clefts group that is typical of one that pops up periodically:

Question:
My [baby] is going to have his first lip surgery in two weeks and they said no binkies after that. I'm wondering how people have dealt with this. It seems like such a traumatic time for a child, yet you can't comfort them like they were previously used to. Does anybody have any suggestions? All of my other children have always used binkies or thumbs so I'm at a loss.

Answers from Parents:

"My son wanted a binky after his first surgery so bad, but it hurt him when he even tried. We had a special blanket for him that he cuddles up with that soothes him now that worked the same - but really good luck! If you can get him started on a soft blankie or something else that would comfort him before the surgery, it won't be nearly so traumatic after to just take the binky away."

"We went through the same issue with our son at 4 months--the way he always went to sleep was with a binkie snuggled right into someone's chest. . obviously he couldn't do that after surgery. We started him getting used to a snuggly bear before surgery that we always gave him to help him calm down and started using the binkie less--trying to comfort with rocking, etc.. He couldn't chew or suck on the bear, but I think just having the comfort object helped him through.

"Now, we're 1 month out from the surgery and our little boy doesn't want the binkie now that he can have it. . .he loves that bear, though :)"

"My reply is similar to he others who replied to our post. We found something to try to replace the binki right before surgery. With [our baby] it was a special blankie (that I took with us to the hospital) and I would sing to him to soothe him. It was hard the first few days without the binki. I would let him have his Bottle in his mouth just to suck on someimes. But he really didn't want it much because of the pain in his mouth.

"Now, he is 2 months post-op and he can have a binki. At first he didn't want it, but now he loves it again and can even keep it in his mouth! (which he couldn't do before). I hope this helps. Good luck with the surgery!"

"It is really hard for a little while to get them to be able to relax and soothe themselves without something in their mouth. I just held [my baby] a lot, sang to her, and loved her. Obviously it is very hard on you too, and you won't get a lot of sleep but at the end of a month, it seems to get much better. The process is just hard, for both you and your baby, you just have to keep loving them and fight through with them. They are resilient and will figure something else out, it just takes time. Hang in there!!!"

Pacifiers

Facing a new baby without the help of a binkie can be a daunting thought, particularly, it seems, for those who have relied on them with previous babies (I'm only on my first, so I wouldn't know, but I had the feeling that it wasn't quite so bad since I didn't know what I was missing...). It seems like a lot of parents have questions right away about pacifiers, including:

1. Will my baby be able to use a pacifier at all?
2. Can my baby have a pacifier after surgery?
3. What pacifiers work best for cleft babies?

I'll share what I know, then include a few other parent comments on the topic.

1. Will my baby be able to use a pacifier?

From my experience, this is another "it depends" answer (fully unsatisfying, I know). Babies with clefts generally don't have good suction or lip closure, so they have trouble keeping a pacifier in without help. However, after the lip repair, babies can often take a pacifier and keep it in reasonable well (though you may have to try a few different kinds to find what works best for your little one). Lots of babies with clefts love the binkie.

2. Can my baby have a pacifier after surgery?

Again, it depends on your doctor and on which surgery. Here is my experience:

Dr. Morales was our surgeon, and after the first surgery to put in the prosthesis, he said he didn't have a problem with us using the pacifier occasionally. We weren't sure if it would be allowed, so we tried to use it only if we were out in public where we needed our little guy to stay quiet (and, to be honest, to cover up his cleft if I wasn't up to having people stare) in the hopes that he wouldn't get hooked on it. So I'm not sure how Dr. Morales would feel about heavy usage just after surgery, but it wasn't out of the question at any rate.

After the lip repair, we weren't allowed to use the pacifier for about a month (with good reason; I'd have been afraid to use it!). However, at the one month check-up, Dr. Morales actually encouraged using a pacifier because he said the plastic phlange on the pacifier would massage the scars and help stretch them out. So after that we did some binkie shopping and our little guy was hooked until his next surgery.

After the soft palate repair I think we could have gone back to the pacifier after a short time, but our little man wanted nothing to do with it. I tried lots of times over the ensuing months, but he wouldn't have it. And I've heard of other kids that just didn't want anything in their mouth after surgeries.

3. What pacifiers work best?

As with most baby products, this differs with each baby. Here are some things that I have heard/found:

• Some people like the Soothie pacifiers because they are all one piece, which helps some kids get more suction on them. I found them impossible to keep in, and friend told me they were designed so that babies can't keep them in. Confusing! Since these are the ones they usually give out at hospitals, you will probably end up with at least one free one that you can try out on your baby
• Others like "Wubbanubs," which is basically a soothie pacifier sewn onto a little stuffed animal so that the baby can hold it in more easily. Here is a link to the site (though they would be really easy to make, and much cheaper!). You could use this idea with other pacifier brands, too.
• Someone suggested getting pacifiers for older babies, since they are bigger and thus easier to hold in. My little guy didn't go for it (too much of a mouthful?) but I know others have.
• What worked for me were the Playtex orthodontic pacifiers with the curvy neck. Since the neck was long, the baby could close his lips around it and hold it in. He got fairly good at it after a while.

Any other suggestions or thoughts? I'll be glad to add them!

Will I be able to breastfeed after surgery?

The answer to this isn't particularly clear. Some babies with clefts are able to breastfeed from the beginning, particularly if the cleft only affects the lip. And a few babies are able to gain suction after a full or partial repair, but often the combination of little to no suction due to the cleft and having chewed a bottle to get milk rather than suck makes it difficult for babies to transition to breastfeeding. Here are a few comments from parents that were posted to the group:

"I also had high hopes for breastfeeding after the first surgery. However, [my baby] was just so used to basically a chewing like motion with his feedings that he was unable to suck at all. Dr. Warnock explained that some babies are able to breastfeed if your letdown is powerful, but you would likely still need to pump in order to get the hind-milk since suction is needed for that. I felt that it was just too frustrating for him and me that it interfered with the process. Every situation is different so I encourage you to give it a try."

"I think that if you want to give it a try, then you totally should!  I would contact a Le Leche League person, to help you have the best chance possible.  However, I do know that after my son had the hard and soft palate fixed (about 1yr old) he was still not able to even use a normal sippy cup.  It is not just the fact that the holes are all gone... it's also an issue of these kids not using the muscles in the soft palate... so it takes a while for them to learn to use them and to have the normal sucking strength.  So, it may take you longer, but if it is something you really want to do, then  you should go for it!"

"I think that if your baby's cleft is small enough and the prosthesis seals off the cleft, you might be able breastfeed. Medela makes a Supplemental Nursing System that you could try. It enables babies to feed at the breast before they know how to suck by giving them either expressed milk or formula through a device that is hooked up to you. It might be a good way to try to see if your baby can suck without starving him or losing your milk supply. I read an article once about a woman whose baby's palate was completely repaired at 6 or 7 months and she used this until her baby mastered sucking."
 

Surgery Day

I know that someone in the group wrote a great, detailed description of what happens when you come in for surgery. Unfortunately, I haven't located it just yet. So while I am here in the waiting room, here's a quick rundown of surgery day.

The business day before surgery (i.e. Friday if surgery is on Monday), the hospital will call to tell you what time to come to the hospital, what time your child can eat, etc. The call will usually come in the mid to late afternoon (they called me at 2pm on Friday for Monday surgery this time, but last time it was closer to 4pm). Because of the risk of getting fluid in their lungs, babies cannot have any food or drink for several hours before surgery. This time, Ethan's schedule was this:

Solids: up until midnight
Breastmilk: until 5:15 a.m. (4 hours before surgery)
Pedialyte or Apple Juice: until 6:15 a.m. (3 hours before surgery)
Check-in: 7:45 a.m. (1 1/2 hours before surgery)
Surgery: 9:15 a.m.

When you arrive at the hospital, you check in at Same Day Surgery on the second floor. If you go up the elevators on the south side of the hospital (the opposite side from the Rainbow Cafe), the check-in area will be right near the elevators. When you walk in the room, there is an electronic kiosk to your right, and someone should be there to give you a beeper. They will beep you to go sign paperwork and give your insurance information at the desk, then they will beep you again to see a nurse before surgery.

Once they beep you the second time, a nursing assistant will weigh and measure the child, then you'll go in a room where they'll check temperature, blood pressure, oxygen, etc. and give you jammies to change them into. Then a nurse will come in and look at ears and mouth and listen to heart and lungs, then take you to the surgery waiting room. Last time the surgeons were running behind, so the nurse let us give Ethan some additional Pedialyte (so you might want to have some on hand, just in case).

While you are in the waiting room the surgeon will come talk to you and answer any questions that you have, then the anesthesiologist will come and do disclosures and have you sign paperwork. Then you will walk with the anesthesiologist down the hall toward the OR, and then the anesthesiologist will take the child in and send you to yet another waiting room. This point is one of the hardest, because you have to hand your baby over. We have been lucky, because Ethan has been fairly easy-going about it. Before the last surgery, he gave me a big smile as we handed him over. And this time he was totally happy to go off with the friendly anesthesiologist, who told the nurse that he was a sweetie and just cuddled up to her as he went to sleep. I'm not sure how I would have handled it if he was crying... =(

When you get to the surgery waiting room you'll check in with the people at the desk, then you can go get something to eat at the cafe or do anything else you need to do. Food and drink are welcome in the room, there is a courtesy phone and a TV. If you're there in the morning, a courtesy cart comes by between 10 and 11 with some complimentary snacks.

After the surgery is over, the surgeon will come tell you how it went, then once the child is waking up they will call for one parent (only one at that point) to go meet the child in post-op. You will stay there until the child is comfortable, then you will meet up with any other family members and head up to the 4th floor to a room (unless it's outpatient surgery, in which case you'll stay in the PACU area until you go home, which is usually as soon as the child has taken in enough liquids).

For me, this is where the hardest part begins. Ethan tends to wake up quickly and angrily, but the nurses are good at getting his pain managed and with some comforting he settles down fairly quickly. Then the next day is spent comforting and feeding and navigating several monitors plus an IV. Not to mention attempting to work in pumping milk and catching a few minutes for myself to eat and catch a few winks. We have been really lucky that Ethan hasn't had to stay for more than 24 hours as of yet; getting released and having all of those wires disconnected is always the greatest relief. Then we pack up, go home, and pray that it's not too long before Ethan gets to sleeping through the night again so that we're not perpetually exhausted. Yay for the end of surgery day!

How do I keep track of all those medications?

This is the question I had after my son's second surgery. In addition to his lip and nose repair, he had tubes put in his ears, so he had pain medications, antibiotics, ointments, ear drops, saline drops, and I don't even remember what else. I'm couldn't keep track of all of that on a normal day, let alone the day after coming home from the hospital. Thankfully, my mother is more organized than I and made me this handy-dandy spreadsheet to keep track of everything.

If you're like me and your creations on Excel aren't so pretty, you can download the file from the Kids With Clefts Utah group page on Yahoo! under the documents tab. It's saved as "Ethan's Med Log."

How do I deal with the emotions of my child's surgery?

One mom wrote the following advice:

"I think you're right that one of the hardest parts of this whole process is to not allow your worry or grief or anxiousness to affect your child. I thought I handled it really well... except for the desperate sobbing :)

"I think it's important for you to take plenty of breaks while in the hospital and to eat and sleep when you can. You'll be far more able to take care of your child if you're able to take decent care of yourself as well.

"Our experience at Primary Children's was great - the nurses really worked with us to keep our daughter as comfortable as possible. Just know, and try to prepare your heart, that those first few days are really hard and it will get a little better every day."

There is also a post that I wrote just before my son's second surery here.

What if my baby gets sick before surgery?

Here are the pre-operative instructions provided by Dr. Morales' office, most of which deal with illness:

1. Do not have your child have any immunizations any closer than 2 weeks prior to the surgery date.

2. Do not give your child any aspirin or aspirin products 3 weeks prior to surgery. (It reduces their blood clotting time).

3. Any exposure to chicken pox or any communicable disease must be reported to our office immediately if occurrence is 6 weeks or closer to the surgery date. Surgery will need to be rescheduled to insure the best surgical result and recovery of your child.

4. With any other illness within 2 weeks of surgery, please notify our office and get your child to his/her pediatrician immediately. Depending on the type of illness, it may be necessary for us to arrange a later surgery date.

5. If your child contracts any respiratory infection, coughing, fever, vomiting and or considerable nasal drainage a day or two just prior to the surgery, the anesthesiologist will not put your child to sleep. Please notify our office as soon as possible and we will arrange for a new surgery date for your child.

6. Take every precaution to keep your child away from family members or anyone who is ill. We want your child in the best possible health for the surgery and to avoid any delays.

7. Bring your child's favorite toy or blanket with you the day of surgery. They will be comforting to your child.

8. Please know that eveyr precaution will be taken to insure the best possible care of your child during and after the surgery. Feel free to call our office with any concerns you may have.

Surgery Timeline: Dr. Morales

Here is the general surgery timeline that Dr. Morales gives out to parents during the first appointment (with a few footnotes from me). The other local doctors' timelines are vaguely similar, and as always, this will vary depending on your child.

Cleft Lip Only:
6-8 Weeks              Lip & Nose Repair
6 1/2 - 7 Years       Possible Lip & Nose Revisions

Cleft Palate Only:
9 Months                Hard & Soft Palate Repair
                              (or adhesion with palatal prosthesis if cleft is wide)
18-24 Months        Soft palate z-plasty*
                              Complete Closure (if previous adhesion)
8-14 Years             Midface Advancement (if malocclusion)
                              Distraction v. Orthognathic**

Cleft Lip & Palate:
6-8 Weeks             Premaxillary repositioning,
                              Palatal Prosthesis (weekly adjustments 1-2 mos.)***
3-4 Months            Lip & Nose Repair, Palatal Prosthesis
9 Months                Soft Palate Repair
                              (muscle z-plaxty or adhesion if wide),
                              Palatal Prosthesis
18-24 Months        Soft Palate z-plasty* (if previous adhesion),
                              Palatal Prosthesis
4 Years                  Hard Palate Repair
6 Years                  Alveolar bone graft (if gumline involved),
                              Closure Nasolabial Fistula****
6 1/2 - 7 Years      Nose & Lip Revisions
8-14 Years            Midface Advancement (if malocclusion)
                              Distraction v. Orthognathic*

*Z-plasty is a type of plastic surgery, and refers to the shape of the incision/where two tissues are stitched together.

**Malocclusion is a general term when there is a misalignment of the teeth for any number of reasons. With cleft palate children, the upper jaw often is stunted in growth because it is being pulled together to repair the cleft. So in some cases, a "Midface Advancement" is undergone to pull the upper jaw forward into alignment with the lower jaw. There are two methods of doing this: Distraction and Orthognathic Surgery. Both involve cutting and realigning the jaw bone to the desired position. 

***This is a prosthesis that goes in the hard palate to pull together the hard palate. In the case of a cleft that goes through the gumline and lip, a plastic chain (kind of like what you'd see with braces) is attached from the prosthesis to the premaxilla, or the gumline in the front, to pull it to the correct position in preparation for the lip repair. The article on the maxilla, as well as the links from it, may be helpful for an anatomy review.

****The alveolar ridge is essentially the gumline, and a bone graft allows for completion of the gumline and will also facilitate implants in spaces where there are missing teeth. A fistula is essentially a hole that connects two organs that normally aren't connected. In the case of children with clefts, often a fistula will open up in their palate after surgery, connecting the nose and mouth or lip (thus the term nasolabial, or nose-lip).

How do I prepare my child for surgery?

There are some good suggestions and resources on the PCMC webpage here.

There is also a pre-surgery class that includes a tour of the hospital, activities for various age groups to help prepare them for their experience the day of surgery and an opportunity for older children to discuss their concerns with a surgery nurse and child life specialist, and an opportunity for parents to ask questions. Classes are held Monday through Thursday at 4:30 p.m., and you can check in at the 2nd floor surgery registration area. If you would like to attend, you can register by calling (801) 662-2824 and giving them your child's name and age, the date you plan to attend, how many are coming, and the type of surgery your child is having. You can get more information here if you're interested.

More suggestions to come...

How do I keep the arm restraints on after surgery?

Depending on your doctor and the type of surgery, you may be required to keep your baby in arm restraints for anywhere from 2 to 6 weeks or more after surgery in order to keep her hands out of her mouth. PCMC issues Snuggle Wraps, also known as "no-nos," which velcro on to keep babies from bending their elbows, like this:

Keeping the restraints on can be a daunting task, since babies are squirmy and resourceful. The following are a few tips that parents have found helpful:

• Make sure the restraints are the right size; they should go from the armpit to the wrist. If they are too small, the baby can bust out, and if they are too big, they won't keep the arms straight.
  
• Put the restraints on underneath a long-sleeved shirt that is snug in the arms to help keep them in place
• Put the restraints on over a long-sleeved shirt. Use a diaper pin to pin the restraint to the shirt at the top. Then fold the cuff of the shirt over the bottom of the restraint at the wrist, and place a second pin through the shirt and restraint there. (Some have said that a single pin in one place or the other does the trick)
• Put the restraint on over a long-sleeved shirt, then layer another long-sleeved shirt over that!
  
• The velcro tends to come off, so you may want to sew around the edges of the velcro.
• Wrap around the velcro with dragonskin tape, which you can buy at a pharmacy.
  
• Try another restraint. Some parents have liked the "Baby Hands Down" restraint, which tethers the baby's hands to their waist and allows a broader range of motion. They seem to be out of production currently, but you may be able to track down a used one, borrow one from another parent, or make one yourself. Here is a more detailed description of the Baby Hands Down.
  
• If your baby doesn't tend to touch their mouth, you may be okay without restraints as long as you keep a close eye on them. You could potentially just put them on at night and naptime, etc.
• If your baby squirms out of the restraints during the night, you may consider swaddling them over the restraints or using a loose swaddler like the Woombie to keep them from getting at their mouth in their sleep.
  

If you're not already in the topic on arm restraints, you can read about different kinds of restraints here.

You should take off the arm restraints for a significant block of time every day so you can massage and exercise your baby's arms. Some parents have expressed dismay that their children have lost arm strength and were set back in motor coordination and development as a result of being restrained for so long. Just make sure to keep a close eye on them and keep them within arm's reach!

What will the hospital room be like?

Generally each hospital room at PCMC has two beds/cribs separated by a curtain and a shared bathroom. Babies are given a hospital crib with adjustable sides. Some parents have had success asking for an adult-sized bed so they could sleep with their infants, but the general policy is against doing so. With each bed/crib there will be one rocking chair, one fold-out chair (where a parent can sleep), a TV, a phone (which was nice because my cell phone reception was poor), and a sink. Kind of your standard hospital set-up. The bathroom in the room does not have a shower; there is a shared shower on each hall.

Tips for hospital stays

The following is a compilation of tips for preparing for your stay at PCMC. Obviously you don't need to use them all, but I tried to include all the tips I could find...

• Bring a book or something you enjoy doing to keep yourself busy during and after the surgery.
  
• There is wireless internet access, so if you have a laptop it is nice for keeping in contact and having a distraction.
  
• If you don't have a laptop, there is a computer lab that you can go to. Ask the nurses for directions. The parent resource center, called the "Forever Young Zone" is on the 3rd floor.
  
• There are showers, but you probably want to bring toiletries to use. There is a soap dispenser, but that is all that is provided.
• Don't forget a toothbrush, face wash, hair ties, and extra contacts/glasses if you need them.
  
• Bring your wallet! There is a hospitality cart that comes by in the morning from which you can pick 3 items, but otherwise you will need to buy food from the vending machines or the Rainbow Cafe on the first floor.
• Bring a camera! You will want pictures.
• Dress for comfort. You may want to avoid light colors in case your baby has a little residual blood that drains out.
  
• Bring your own pillow and blanket; theirs aren't the most comfortable.
  
• If you'll be there for more than a night or so, you may want to bring a foam pad, because the fold-out chair is not overly comfortable either.
• Bring something familiar to comfort your child. Depending on their age you may want to bring a few toys or books or things to keep them entertained that they can still use with arm restraints on.
• I believe you can check out movies, so ask the nurse. You may want to bring a couple of favorites from home.
  
• Your child's diet will likely be restricted after surgery, and they may not like the hospital's selection, so you may want to bring some soft foods that they like from home.
• Bring comfy pajamas (also, something you don't mind the nurses seeing you in in the middle of the night). You may also want slippers for when you have to hop out of bed to get a crying baby or run to the vending machine or shower. If your child is walking, bring no-slip socks or slippers for them, too.
  
• Bring extra clothes to change into.
  
• Bring your own bottles/nipples. They generally have Mead Johnson bottles and Pigeon nipples there if you need them, but some babies don't like new, hard nipples, particularly after surgery. And if you use a different bottle or nipple, they may not have it for you.
• If you are using formula, bring some of your own, particularly if you use a unique or special brand.
  
• If you are pumping (or breastfeeding), don't forget your pump and/or pump attachments to use with the hospital's pumps. There is a room on the 4th floor with 4 or 5 pump stations, but you need your own attachments, and it is also nice to just be able to pump in your baby's room. You may want to bring a nursing cover or blanket though, since nurses will be coming in and out.
  
• You may also want a bottle brush, dish soap, and a dish towel to wash bottles and pumping equipment. There is a steam sterilizer in the 4th floor pumping area if you need to use it.
  
• You may want to prepare by looking at some of the pictures of babies right after surgery (particularly for lip and nose repairs) so you get an idea of how things will be.
• Have someone come to help you! Generally they only let one parent stay the night (though depending on which nurse you ask, they might make exceptions), but it is nice to have someone there to help tend and comfort your child, to go pick up any food, toiletries, or other items that you need, and just to provide some support and a listening ear. Take help when it's offered!
• You don't need to bring diapers and wipes; they give you a little box of wipes and a pack of Huggies after surgery.
• Bring clothes for your child that button or zip in the front, since you probably won't want to have to pull anything over their heads. Also, you may want something without feet, since nurses will need access to monitors/IV's in their legs/feet.
• Bring any medications that your child is taking, along with their prescriptions (the hospital may be able to administer some through the IV).
• Ziploc baggies often come in handy for random things.
• Babies often like batting around mylar balloons, and they can do it with arm restraints on. They are available in the gift shop on the first floor.
• Ask for the child life specialist on your floor, who will have activities for children.
• There is information for families of patients on the PCMC website, here.
  

If you'd like to see maps of the hospital floors, go here.
Do you have more suggestions? Please leave a comment!