Kids with Clefts Utah

Donate your arm restraints!

2011-12-29T09:30:00.000-08:00

I got this email from another parent this morning:

Hey, fellow cleft parents!

A wonderful organization that does tons of work in Chinese orphanages is gearing up for an April cleft palate surgery trip and is looking for left over No Nos. If you have a leftover pair or three, here's a great cause to donate them to - I'm going to send ours off today!

Here's their contact info and post from Facebook:
Got No Nos? Plans are underway for our next cleft surgery trip to China - and we will need 50 pairs for the kids we heal. If you have a pair you could donate, please send them to

LWB,
306 S Bryant, Suite C 145
Edmond OK 73034

Cleft toy truck!

2011-12-05T10:08:00.001-08:00

Our fried Kate shared this on the group Facebook page not too long ago. This fun Tonka truck looks like he could have a bilateral cleft! A great gift for those little boys (or girls!) in our life with extra wide smiles.

Apologies...

2011-09-19T14:26:00.000-07:00

I just realized that there were several comments sitting in my moderation box that I hadn't seen! I thought I had set the blog so that it would email me when there were comments, but clearly I didn't do it right... My apologies to those of you whose comments were not posted until today! I turned off the comment moderation and I will just keep an eye on them from now on =)

-Meg

Before and After: Joe

2011-08-04T23:19:00.000-07:00

Between his first and second surgeries.

Lip taped and ready for surgery #2.

5 months old, just after surgery.

4 days after surgery, feeling great.

7 months old, very happy!

Joe Marcus Albert has a unilateral cleft lip and palate, and has had two surgeries so far with Dr. Morales.

Beautiful Baby

2011-04-26T10:15:00.000-07:00

Melissa Papaj recently emailed me and was willing to share the newborn session that she did for her cousin. Isn't this little one darling?! I think it is so special to capture these little ones the way they came to us before surgery, and I'm hoping my son gains a sense of how much we have always treasured him from the newborn pictures we did. My grandparents only had maybe two photos of my aunt before her cleft repair, and it would have been so special for her grandbaby and my son to see more pictures. But they lived in a different time and different circumstances...

If you'd like to see more of this lovely session, take a look at Melissa's blog here: http://melissapapajphotography.blogspot.com/2011/04/baby-devens-newborn-session-utah.html.

Help! We have tried everything and can't get our baby to eat!

2011-04-26T09:45:00.000-07:00

This seems to come up pretty frequently, since babies with clefts have a harder time feeding from the bottle and are more prone to gas and reflux. Here are some tips from parents:

"Have you worked with an occupational therapist or physical therapist? Our occupational therapist was a lifesaver when it came to feeding and issues with the ng tube."

"Our little guy also had reflux. To help, we had him sleep in a bouncer. He slept in that for the first 6 months of his life. It helped with the reflux. Also, I discovered that Mylicon did not work for his gas, but that gripe water worked great! The brand we use is Little Tummies. We still use it when he has surgery because the anesthesia causes such bad gas. I gave him the max dose after his last surgery and he passed gas all night long and felt much better. We also used Good Start. It was the most gentle on him."

"We had the same feeding issues. We tried different nipples in the NICU and the only one we had any luck with was a regular Avent nipple that we cut a slit into because of the weak suck. This worked enough to be able to stop the NG and come home on a formula called Pregestimil as he was not tolerating breastmilk. He was on reflux medications which never seemed to do much but thickening the formula with rice cereal worked well since we were already using a cut nipple. It made it a sludge like consistency. At 3 months he had ear tubes put in. Did not help the fussiness. At four months he was taking enough formula but not gaining weight. Because of the poor wt. and extreme fussiness we tried Neocate from home health and that did the trick as he gained a ton of weight and was much less fussy. As he got older his GI issues became more extensive and by age 1 he had a G-tube and stomach surgeries that I won't go into details on.

"I would keep working on volume and see if the fussiness is related. Therapists may have some other ideas but it sounds like you have already gone that route. A GI doctor may be able to come up with more ideas if its reflux. Let me know if you have any other questions. I would try to get the feeding issues fixed a bit before going into surgery since nutrition directly afftects healing."

"Our boy (bclp) had really bad acid reflux when he was a baby. Our pediatrician recommended Similac Alimentum and it was amazing. It immediately helped his acid reflux and the throwing up became almost nonexistent (although we still employed other measures like raising one end of his crib at night, propping him up after feeding, etc.). The only downfall to the formula was that it was really expensive. It cost $25 per can and although the scoop was smaller than with other formulas it still was really pricey. So knowing that I don't know if it's an option or not, but I thought I'd just put it out there. We were really lucky that at the time we needed it our boy was a foster baby and WIC paid for it. Good luck. It sounds like a really trying time for you all."

"Our daughter (no cleft or anything) had really bad reflux and gassiness and we put her on Enfamil gentlease and it made a huge difference. I couldn't lay my daughtet down flat on her back after she ate for a good half an hour at least. We currently have my son on Enfamil Nutramigen and he is a totally different baby since we put him on it. Nutramigen is the Enfamil version of Alimentum. It is totally broken down and hypoallergenic. Gentlease is partially broken down."

"If you are still have feeding issues, it would be wise to try and get a referral to the FUN clinic at Primarys. It is a group of people who work with your child to solve the problem. My son had feeding issues for a year and half, and it was not until we went to the FUN clinic that we finally figured out what was going on. We got the referral from our ENT and also our pediatrician. It takes a while to get an appointment, so I had them put me on the waiting list, and I got an appointment for the next day!"

How can I help my baby adapt to solids?

2011-04-26T09:23:00.000-07:00

It seems pretty common for babies with clefts to be somewhat averse to solid foods. Here are some suggestions from parents:

"[My son] had a really hard time with solids for a while. Does your little one have a palate prosthesis yet? That made things a bit easier for [him], even though he still gagged and choked a bit. When his soft palate was repaired all that stopped and he could eat just fine. But if he's not ready, there's no reason to push it. There's no schedule that says your baby has to be on solids by a certain age. And with a bottle like the pigeon, where he'll have to work his mouth and tongue muscles differently to drink, you may see improvement in his eating ability.
Good luck!"

"With feeding my one twin... loved baby food the other... hated baby food but loved what we were eating. We would mash or food process it up or very tiny pieces lot and lots of sweet potatoes and baked potatoes. And now she eats better than her sister. I know there are certain things you have to buy in baby food form because it is safer I can't remember what they are. We would mix them in with their lunch bottles I would make a sluah and had cut the nipple bigger and no vent (white thing) that helped [my baby that didn't like food] a lot but now like I said she eats way better than her sister especially when she feeds it to herself."

"We didn't give [our baby] cereal until after he had been eating fruits and veggies for a while. Maybe try doing it this way. This way he'll get used to eating mushy food like fruit, and since it tastes really good it may be more enticing. The cereal just seemed to give him really bad gas."

"my daughter (no cleft) refused to eat any and all baby foods. She wouldn't even eat applesauce. We kept trying cereals, fruit and veggie puree and nothing. Then one weekend, when she was about 7 months old, she got a taste of mashed potatoes and also some macaroni and cheese, and she was an immediate fan. By the end of the next week she was eating chicken and anything else we could give her that wasn't super hard (she had NO teeth at the time!). She loved food, but hated baby food! After that she would eat regular oatmeal, cream of wheat, yogurt, pasta, cubed and cooked carrots, bread, and anything else that wasn't really crunchy. Your boy may just not like the texture of baby food."

"With solids, my boys didn't do well with any of the fruit ones or things with vitamin c/absorbic acid. I think it stung their nasal passage. We stuck with veggies or mashed up fruit without anything added to it. It took lots of practice, but they eventually were able to down everything. I did find though that once they sneezed, that was the signal feeding time was over (or else it would turn into a struggle).

"Another thing that helped with feeding time, is if I grabbed an extra spoon and let my son play with it while I held the other spoon and fed him. I don't know if it distracted him or what, but it seemed to make things easier."

Is it normal for my baby to burp SO much?

2011-04-26T09:14:00.000-07:00

Here are some answers from the group:

"We had to spend SO much time burping our boys. I literally became a master burper. After so many hours, I gained a sixth sense now of sensing when my child has a burp Haha! Even to this day, I can sense when my baby daughter (who doesn't have a cleft) has a burp in her.

"Hang in there. They are so much happier when you get that burp out (and way less spit up!). Just know I've been there, and it's normal."

"[Your baby] could have reflux, which is common in babies with clefts... I don't think his burping problem hours after he eats is related to his cleft and I would look into acid reflux which can be treated with medication. Babies typically out grow it but until they do it is miserable for them."

"I am a big fan of the pigen nipple with the playtex vent-air bottles (just make sure you don't get the wide nipple ones!). They have worked great for my son. He still only takes 6 oz bottles most of the time, any more than that and he gets too full and just spits up. Anyway, the playtex bottles really seemed to help with the gas.

"Another suggestion, if you are using formula, stir your bottles, don't shake them to mix. They get a lot less air in that way!"

Tiny Wide Smiles - Doll Cleft Clinic

2011-04-26T09:01:00.000-07:00

I love our entrepreneurial parents! Our very own Kate recently started Tiny Wide Smiles, a cleft clinic for dolls! They modify dolls to have a cleft scar to match your child's scar. I think these could be great to help prepare siblings for the arrival of a baby with a cleft. Here is her link on Facebook: http://www.facebook.com/TinyWideSmiles. I love this idea! If we have another baby with a cleft (and there's a good chance we will), I'm definitely getting one!

FDA releases info about link between Topamax and clefts

2011-03-23T08:15:00.000-07:00

"The U.S. Food and Drug Administration (FDA) is informing the public of new data that show that there is an increased risk for the development of cleft lip and/or cleft palate (oral clefts) in infants born to women treated with topiramate (Topamax and generic products) during pregnancy."

Topamax is an anti-seizure drug that is also prescribed for migraine headaches.

You can read the entire FDA announcement here:

http://www.fda.gov/Drugs/DrugSafety/ucm245085.htm

I am sure that for anyone who took this drug and did have a child with a cleft, this announcement is a difficult one. When a medicine is involved there can be a lot of guilt and anger that comes. Remember - we all do our best for our children, and that is all we can do!

Switching Craniofacial Teams

2011-03-15T23:05:00.000-07:00

I thought this may be interesting for anyone else that is in a transient stage of life like we are...

My husband and I are both from southern California. Our little boy was born with a bilateral cleft lip and palate a year before my husband graduated from BYU. Clefts run in my family, and my cousin's little boy has a unilateral cleft and is seen at the Loma Linda University Craniofacial Team. He had finished all of his surgeries by the time he was 13 months old, so we anticipated a similar timeline for our little fellow. After some consideration we chose Dr. Morales as Ethan's surgeon, but were surprised to find that the timeline was vastly different than what was done in California.

Dr. Morales did three surgeries during Ethan's first year: placing the prosthesis, the lip and nose repair, and a partial repair of the soft palate. We were pleased with the work that he did and Ethan's repair looked amazing. My husband graduated in April and was on the accepted wait list at a medical school, so we were kind of in limbo during the summer. We talked to Dr. Morales about perhaps speeding up the surgery schedule because we'd be moving away, since we knew we couldn't afford to come back to Utah for Ethan's surgeries once we left; we had been on BYU insurance, but as starving students we couldn't afford the co-pays for all of Ethan's medical care, so Ethan was on Utah Medical. At one appointment Dr. Morales seemed to entertain the idea of doing things differently, but when we went in in July to schedule Ethan's soft palate repair for the fall, I asked again about changing things, and he responded by saying that lots of people traveled from far away (as far as Germany!) to have him treat their children. Not exactly the response I was looking for.

By the end of July we knew that my husband wouldn't be starting school until the next year and we needed to let our landlords know whether we were going to renew our lease for another year. We ended up feeling strongly that it was best to move back to California - so much so that we packed up and left in about a 2-day period. We had to cancel Ethan's surgery, since we wouldn't be covered by Utah medicaid, and MediCal or California Children's Services wouldn't cover an out-of-state surgery that could be done by someone in-state.

As soon as we got settled again, I called up the craniofacial team at Loma Linda to get Ethan in for an appointment. The soonest they had was at the end of October - 2 months out. At the appointment I was given several "assignments," including meeting with Ethan's new surgeon, Dr. Martin, who also operated on my cousin's little boy. Dr. Martin felt it best to go ahead and close the whole palate and gumline, since that is how he usually does surgeries and he didn't feel comfortable varying from what he normally does if it could be avoided. We were fine with that, and scheduled the surgery for late February. We also met with audiology/ENT and the pediatric dentistry clinic before going back to the clinic, and we found out that Ethan had mild to moderate hearing loss and some severe tooth decay (in part from all of the food that was continually stuck in his prosthesis - Dr. Martin's resident commented on how gunky it was when they took it out).

Ethan had his surgery, but Dr. Martin didn't end up feeling comfortable closing the gumline because the prior repair to the soft palate had created scar tissue, making it more difficult to bridge the gap between the palate and the gumline. He felt that if he had closed the entire thing, there would have been too much pressure and there was a very high risk of a fistula. We were pretty disappointed, because it meant that Ethan would still have to have the bone graft/gumline repair sometime between age 5 and 8.

We are still following up on Ethan's surgery, but he's looking good. One big lesson we learned is that once you start a treatment plan, you can't really switch half-way through. The timeline used in Utah works well, but once you start you can't skip any steps. Now I understand why Dr. Morales was so hesitant to switch things up. Dr. Martin had nothing but good things to say about Dr. Morales (he pretty well-known in the field); he just said that they do things differently.

There are things I like and dislike about both teams. I feel like the Loma Linda craniofacial team clinic is better organized and the process of making clinic appointments and follow-up were more straightforward, but I felt like Primary Children's Medical Center was much more organized and made for a much more pleasant and peaceful stay for Ethan.

Study: Are Arm Restraints Worth It?

2011-01-26T16:10:00.000-08:00

Way back when, LeAnn Roling gave me a copy of a presentation she saw at a conference on the use of arm restraints following cleft palate repairs. I'll copy here the content of the slides from the presentation, and I'd love to hear what people think about it.

My personal feelings on restraints are mixed; I felt that Ethan didn't need them a lot of the time, but then heard a couple of horror stories about children causing severe damage to their recent repairs (particularly external repairs of the lip and nose). I just couldn't risk it when it came to the lip repair, but was a lot more loose with the arm restraint use when it came to the soft palate repair.

Anyhow, here is the study:

A Comparison of Palatal Morbidity With and Without Arm Restraints Following Cleft Palate Repair
DeAnn Wilson, BSN, RN
St. John's Mercy Medical Center
St. Louis, Missouri

Literature Review

Rate of Cleft Palate Fistula (CPF) increses:

With children older than 18 months of age at time of repair
A cleft that is more extensive (bilateral or unilateral cleft lip and palate)
With a surgeon who has notably less experience

Type of repair had fewer implications and gender had none.
(Cohen, et al., 1991; Muzaffar, 2001; Rohrich, et al., 1996; Schultz, 1986; Wilhelmi, et al., 2001)

Only 1 study addressed the merits of using arm splints.
This Randomized Control Trial determined there was no difference in CPF rate when arm splints were not used:
28% CPF with arm splints
20% CPF without arm splints

None of the CPF were symptomatic or required treatment
(Jiginni, et al., 1993)

Problem and Purpose
Problem:

Recovery from a Cleft Palate Repair (CPR) is stressful
Arm splints:

Frustrate infants and toddlers who do not like to be restrained
Hinder parents' ability to hold and comfort their child
Cause sore spots in the axilla, arm stifness
Interfere with sleep by inhibiting self repositioning without waking

Purpose: To determine if the rate of CPF was higher without the use of arm splints as compared to those children that used arm splints following a CPR.

Methods

A single Craniofacial Surgeon's cleft palate repairs (CPR) over a 5+ year period:

2.5 years with arm splints (n=22)
3 years without arm splints (n=43)

Retrospective chart review
All patients underwent a standardized two-flap CPR with "radical" intravelar veloplasty

Extent of Cleft Palate (CP) and Age at Time of Repair

With arm splints:

Complete Cleft Palate: n=7
Incomplete Cleft Palate: n=15
Age Range: 8-38 months; average = 15 months

Without arm splints:

Complete Cleft Palate: n=24
Incomplete Cleft Palate: n=21
Age Range: 6-32 months; average = 13 months

All children > 19 months: recently adopted, n=11; other illness, n=3

Results
With arm splints (n=22):

1 slit fistula - incomplete CP, 13 months (age at repair)
4.5% CPF rate

Without arm splints (n=45):

2 slit fistulae

1 complete CP (wide); 10 months; antibiotics for prolonged fever and sinus infection
1 complete CP (wide); 12 months; IV antibiotics for tracheitis

1 partial dehiscence - complete CP, 28 months, developed strep throat 3 days after surgery
1 complete dehiscence - incomplete CP, 13 months, screamed for 14 hours day of surgery
8.8% CPF rate

Discussion

For each child that developed a fistula/dehiscence, the parent was asked if they observed the child putting fingers or toys in their mouth
Each of these parents reported their child did not put anything in their mouths
The child that developed tracheitis 2 days after surgery was also fed solely via G-Button.
Most parents reported their child did not put anything in their mouths after surgery
In the immediate post-op period, those children that used their fingers or pacifiers for comfort would try, but most quickly took them out of their mouths
Those few children that did continue to use their fingers or pacifiers for comfort woudl adjust the position to their cheek pocket, or simply held their pacifier next to their cheek
Very few children used bottles after surgery, even though we allowed them

Conclusion
Discontinuation of the use of post-palatoplasty arm splints does not significantly compromise palatal integrity.

Emergency Treatment Plan for Kids with Special Needs

2011-01-13T19:53:00.001-08:00

Here is a great article for preparing for emergency situations for kids with special needs:

http://knol.google.com/k/emergency-treatment-plans-for-kids-with-special-or-chronic-health-issues#

Sleep Apnea Support Group

2011-01-06T14:32:00.000-08:00

There is a Wasatch group, and you can find their information here:

http://www.sleepapnea.org/cgi-bin/databasenew.pl?UT&&State

You can also link from that page to find groups in other states.

Sleep Apnea

2010-10-27T09:13:00.000-07:00

As parents of children with clefts, you may want to be on the lookout for signs of sleep apnea if your child has not already been diagnosed with the condition.

"Preschool children with cleft lip and/or palate have a risk of obstructive sleep apnea that is as much as five times that of children without cleft. Obstructive sleep apnea appears to be underrecognized in this group of children."

J.E. Maclean, K. Waters, D. Fitzsimons, P. Hayward, D. A. Fitzgerald (2009). Screening for Obstructive Sleep Apnea in Preschool Children with Cleft Palate. The Cleft Palate-Craniofacial Journal: March 2009, Vol. 46, No. 2, pp. 117-123.

Here are some of the night-time symptoms of children with sleep apnea:
Difficulty breathing while asleep

Pauses in breathing
Snoring
Restless sleep
Heavy sweating while asleep
Nightmares/night terrors
Bed wetting

Daytime behaviors may include:

Sleepiness during the day
Aggressive or hyperactive behavior
Learning disabilities
Morning headaches
Discipline problems
Failure to thrive

http://newtechpub.com/phantom/snore/osakids.htm

For kids with clefts, apnea may be resolved through surgery (such as a mandibular distraction for a child with Pierre Robin Sequence), or by using a CPAP (Continuous Positive Airway Pressure) machine for sleep.

Here are a couple more articles on childhood sleep apnea:

www.stanford.edu/~dement/childapnea.html
www.sleepapnea.org/info/children.html
www.entnet.org/HealthInformation/Could-Child-Have-Sleep-Apnea.cfm

There are myriad articles if you are interested in finding more information online!

Would any of you like to share your experiences with sleep apnea in your children? If so, please email Kidswithcleftsblog@gmail.com.

Surgeon Profile: Dr. Kjar

2010-10-27T08:52:00.000-07:00

Contact Information:

Premier Plastic Surgery of Utah

1551 Renaissance Towne Dr #360

Bountiful, UT 84010

(801) 295-9105

drkjar.com‎

Parent Comments:

"Doctor Kjar does things differently that anyone in the state but does it the same as everyone in the country. This is our treatment plan:

"He had his lip repair on October 12th. It was a great success and he looks great! I saw someone in Walmart today that I haven't seen in years and when I told he had just had his lip repair surgery she told me she would have never guessed anything had even been wrong.

"He will have his palate repair three to six months from now. Dr. Kjar likes to repair earlier for a few reasons. The main being the palate muscles are repaired correctly if the whole palate is repaired in one surgery instead of two. This helps with speech among many other things. He will have to have a NAM (retainer from Dr. Yamashiro) until that point. But we are confident with his plan.

"Then follow basically the same timeline as everyone else. Bone graft around 7 years old, possbile mid-face surgery, etc. The mid-face surgery can be necessary no matter when the palate is repaired according to the research I have done. By mid-face I mean, the upper jaw doesn't grow forward like it should and has to be repaired.

"On top of the treatment plan working for our needs, our doctor is wonderful. We never have a problem getting in to see him, he is completely available any time of the day. He have his office number, cell number, and pager number. His staff is knowledgeable and very helpful."

My milk supply is dropping. What can I do?

2010-10-27T08:31:00.000-07:00

Here are some recent tips from group members:

Pumping is supply and demand. Try increasing the time you pump, even if you don't seem to be producing more milk immediately; you should see results in a couple of days.
Also try increasing how many times you pump per day. You may be able to cut down again once your supply is established.
Make sure you have the right size horns for your pump. A lactation consultant can help you determine if yours are the right size.
You may also try fenugreek supplements or lactation tea to help boost your supply.
Drink lots of water!
Try to relax as you pump.

Utah Kids Group

2010-07-30T23:24:00.000-07:00

There is another Yahoo group called Utah Kids that is similar to the Kids with Clefts group, but the kids all have special health care needs, not just clefts. If you have questions or are looking for support for other health issues, this may be a great resource for you!

Here is the link! http://groups.yahoo.com/group/utahkids/

Thanks, Jenny, for sharing this with the group.

Study Provides New Leads into Genetics of Cleft Lip and/or Palate

2010-06-06T12:14:00.000-07:00

Here is a link to this article; it may be of interest to you.

http://www.nih.gov/news/health/may2010/nidcr-03.htm

Arm Restraints: Honey Cuffs

2010-03-15T15:47:00.000-07:00

Our very own MeriAnn has devised a new arm restraint that will be debuting this summer! They look nice and soft and oh-so-much more comfy than the hospital-issue Snuggle Wraps. Here is a link to her web site:

www.honeycuffs.com

These may be helpful for your upcoming surgeries!

Facebook Page

2010-03-03T07:40:00.001-08:00

Thanks to Jenny for starting a Facebook page for the Kids with Clefts Utah group! Here is a link:

http://www.facebook.com/group.php?gid=333565947665&ref=search&sid=1030481088.3126577037..1&v=info#!/group.php?v=info&ref=search&gid=333565947665

Spanish Blog

2010-03-01T14:45:00.000-08:00

I am working on a Spanish version of this blog to help more local parents. You can view it here: ninosconhendiduras.blogspot.com. If you or anyone you know would like to help with content writing/translating to Spanish, feel free to let me know.

A letter from LeAnn Roling

2010-03-01T13:33:00.000-08:00

Hello,

I have asked Jenny to post this letter because I wanted all of you to know I will be leaving my position as the Cleft Palate/Craniofacial Coordinator as of March 12, 2010.

Giving you guys this news is harder for me than anything else. Watching your beautiful children grow and helping to answer your questions and address your concerns has been the most rewarding part of my job. I can't express how much I will miss all of you and your children. Their care and happiness has been a passion of mine for the past 8 years and moving away from this field will leave a big hole in my heart. It has been my privilege to know all of you and participate in your lives in some small way. I know I have said this to you in the past but you are all amazing people and I am a better person having spent these past eight years working with you and your families.

I will be moving on to take a position at the Veteran's Administration, but I will never forget you!

With deepest regards,

LeAnn Roling RN, MS
Cleft Palate/Craniofacial Coord
Primary Children's Medical Center

How much does surgery cost?

2010-02-11T15:52:00.000-08:00

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).

New Email

2010-02-11T12:32:00.000-08:00

I started a new email to go in conjuction with the blog. If you have anything you think would be good to post, have experiences or information to share, or have any comments or suggestions about the blog for me personally, feel free to send them to kidswithcleftsblog@gmail.com

Suction, Straws, and Sippy Cups

2010-02-11T12:11:00.001-08:00

Transitioning from the bottle to something else can be extra challenging for kids with clefts, since they often have very little or no suction until their palates are closed. Here are some ideas from parents:

"The only sippy cup that [my child] could ever figure out was the Nuby cups with the soft top. Eventually he learned to suck from a straw so he could use the sports type cups with the straw in them. He is 5 years old now, still has the alveolar cleft with small fistula, and still can't suck out of most sippy cups."

"My boys weren't ever able to drink out of the hard plastic sippy cups unless I took out the valve (which unfortunately made them leak if tipped). They did figure out a soft topped one (material similar to the haberman nipple)....we did cut the sippy cup holes a bit bigger too (since the spout was soft plastic), and that seemed to help- especially at the beginning. My boys also could use the hard spouted NUBY cups they sell at Walmart, but we had to of course take out the valve. And then that made for lots of messes in the car and in diaper bags and on carpet, but oh well! ... But eventually both wanted to drink out of a cup without a top. They both did learn how to sip out of a straw though around 2-3 years old, and that was a surprise!"

"[My child] used the soft sippy cups. I think they are a dollar at walmart. I am not sure on the price now. I had [him] off the bottle and he lost weight because he would get too tired drinking from a sippy cup. I would try a few different ones. Look at the grocery store too, they sometimes have one that will work. I wouldnt stress too much about being off the bottle at one. I did and then he had to go back on it anyways. Good luck. Every kid is different and they all have there own time schedule."

"I'm sure every child is different but my son had a very wide cleft and was never able to use a sippy cup with the no-spill valve in it, even after the cleft was repaired. He used a regular baby bottle nipple with a slightly bigger slit cut into it to learn to suck. We also had good luck with the disposable sippy cups because you only have to suck lightly to get liquid to come out of it. Its a harder plastic than the nuby so biting won't help (which is good). For the straw, start by lifting the straw out of the glass holding the liquid in by keeping your finger at the top and as he sucks, slowly let some of the liquid out of it. Then he will learn that he has to suck to get it out. Cutting the straw and putting it in a shorter glass makes it much easier too because less suction is required to get the drink to the top. Good luck."

"To help with learning how to sip out of a straw, our OT taught us this cool training trick: you can take a mead johnson, take a nipple and turn it so it is upside down (dipping into the bottle rather than protruding out the normal way from the top), then insert a small straw into the nipple hole (you may need to cut the hole larger), but you do want the nipple snug around the straw. Then let your child practice putting their mouth around the straw (this takes some practice to be able to pierce those lips), and gently squeeze the bottle, so a bit of juice/water comes out through the straw. This will just get them familiar with how a straw feels/works. They don't necessarily suck at first, but will learn how. Another good way to get them to start learning how to use a straw, is get a milkshake in a flavor the child likes. Suck up a bit of it through the straw, then plug the top of the straw with your finger, so the straw remains full. Then take the straw out of the milkshake and put the unplugged end into your child's open mouth, and then unplug the other end by releasing your finger. It makes all the milkshake that was in the straw fall out and into your baby's mouth. This also gets them familiar with a straw and how it works. We practiced these a bit with my boys, and with Jimmy, one day, we were in a restaurant and he grabbed my drink (which had a straw in it- I thought surely he wouldn't be able to get anything out), and he started sipping!!! It was amazing! I didn't even realize that he would be able to do it on his own yet, but he could!"

"My little guy's occupational therapist suggested getting an empty honey bear and fitting a straw in the hole, that way you can squeeze liquid up into the straw. This is similar to the suggestion using the Mead Johnson bottle, but a lot cheaper! (They are 69 cents at Macey's here in Provo). The bendy straws work perfectly because the part that bends is just big enough to plug the hole and make it airtight, though I think if you could find clear straws it would be even better so you can see how hard to squeeze."

Where Can I Buy Pigeon Nipples Locally?

2010-02-01T12:03:00.000-08:00

Good news! There are now three places where you can buy Pigeon Nipples in Utah:

PCMC Outpatient Pharmacy
Riverton Hospital Pharmacy
Dixie Regional Pharmacy in St. George

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

2010-01-10T14:14:00.000-08:00

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

2010-01-10T13:17:00.000-08:00

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!

Some sites on adoption

2009-12-06T07:53:00.000-08:00

Here are a few sites about adopting children with clefts, as well as a few organizations that facilitate adoptions:

RainbowKids.com: The Voice of Adoption

Love Without Boundaries

ComeUnity: Special Needs Adoption

Starfish Foster Home, and Starfish Blog

More to come... Also, if you have any sites to recommend, please do tell =)

Pumping Tips

2009-11-15T16:39:00.000-08:00

Here are some tips that one of the pros at Primary's on pumping gave for one mom:

To begin with, if the pumping is painful, something is probably wrong.
Over 50% of the time, it is that the flange size is incorrect.
Medela and Ameda both have several flange sizes. A good website for mom to look up is ameda.com which shows a short video of a mom pumping and how it should look if the flange size is correct.
The other possibility is that this mom is using a small electric pump that is meant only to be used a few times per day. She really needs to rent a hospital grade electric pump. This will be more comfortable for her and also much quicker.
Milk is made on supply and demand.
Most mom's need to pump at least 6 times/24 hours to have enough milk.
Decreasing to only 2 - 3 times/24 hours will significantly decrease production most likely to less than 50% of the need.
Mom's goal for total production should be 24 ounces/day when baby is 2 weeks old and should be ~30 - 32 ounces per day when her baby is a month old.
Mom's milk is made perfect regardless of how much stress she is under. The problem with stress is that it impacts production resulting in less milk. Hope that helps!

And some more tips:

More suction doesn't always equal more milk; it may just make you sore, resulting in less milk. Keep the suction at a comfortable level; you may want to start low, then increase it slightly once milk starts flowing.
You may also want to try varying the pumping speed rather than the suction if your pump has that capability.
Drink lots of water and get plenty of calories and nutrition! Like stress, lack of nutrition won't significantly decrease the quality of your milk, but it will decrease the quantity you produce. Breastfeeding/pumping can burn 200-600 calories per day (depending on who you ask).
There are great tips and guidelines on the Ameda website for mothers who exclusively pump here.
There are also tips from Dr. Sears here, including tips on massaging prior to and during pumping. I have found this to be really helpful in producing more milk.
There isn't always something wrong if pumping is painful, particularly at first. Breastfeeding is generally uncomfortable at the start, and pumping is no different. However, if it continues to be really painful for an extended time period, then some adjustments may be helpful.
Have your baby sit with you while you are pumping; it can help you to produce more. I used to feed my baby while pumping - it was more efficient, I was more likely to pump as much as he needed, and it helped my let-down.
Figure out a way to pump hands-free. They sell bands that hold up the horns online, but they are a bit pricey. You can also try cutting slits in the front of a sports bra, or just propping the horns in your regular bra by pulling the cups up over the bottom of the horn and pulling your shirt down over the top. This way you can hold your baby or do other multi-tasking that helps the time to go by.
Have snacks, water, etc. on hand at your pumping "station." Make it a relaxing spot.
Get an extra set of horns so that you don't have to clean them as often. You can also put them in the refrigerator between pumpings to reduce washings (since the milk on the horns will stay good in the fridge).
Some women take Fenugreek supplements to increase their milk supply. They are available at health stores like GNC. You may want to ask a lactation consultant about it.
You may also use a little bit of vegetable oil to lubricate the horns and reduce irritation; creams like Lansinoh are often not smooth enough.
There is also a Yahoo! group here for mothers who pump exclusively for medical reasons.

I'm sure there is more wisdom out there, and I'll add more tips as I come across them!

One final note: if you are in the beginning stages, be encouraged! It's not easy, but it can be done, and you may find that it gets easier with time. My son is 9 months old now and eats 5 times a day, and I have been able to cut down to 4 pumpings a day and haven't had to supplement with formula. I tried to mimick nature and decreased my pumpings as he spread out his feedings. That being said, if you aren't able to pump for your baby, don't let yourself feel guilty about it! Everyone's circumstances and bodies are different. It is easier for some than others, and with a baby with special needs, you have enough stress on your plate! Plenty of babies thrive on formula. I think that I have had it relatively easy, but even so I have been tempted to quit many, many times. And if I have another baby with a cleft, I don't know if I'll be able to pump like I did for my first; we'll have to see what our circumstances and my sanity are like then.

Will I be able to breastfeed after surgery?

2009-11-15T09:42:00.000-08:00

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

2009-11-09T14:17:00.000-08:00

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!

Adopting a child with a cleft

2009-11-07T13:33:00.000-08:00

This is the experience of the Morningstar family. Thank you so much to them for sharing! If you would like to read more about their experience, you can see their wonderful blog here.

Parenting is not for the faint of heart. Adoptive parenting is for those with extra guts. And adoptive parenting of a child with a cleft palate? Well, that's left for those with an extra well-developed sense of adventure.

In January 2009 we traveled to Karaganda, Kazakhstan to meet and welcome 22-month-old Alexandra Grace Morningstar into our family.

Sasha (short for Alexandra) was born with a wide bilateral cleft palate and (maybe) with mild Pierre Robin Sequence (PRS) and spent most of her early childhood in hospitals and the Botakoz Baby House. When we first learned about Sasha's cleft palate, we were torn - we knew that this was an easily correctable condition here in the US, but we also knew that it compounded the scads of the unknowns that are intrinsic to adoption. So we started researching.

After talking to families in similar positions to our own, researching on the web, and talking with the cleft palate team at our local children's hospital, we learned the following:

These kids are survivors. Our daughter would not have lived through her challenging early childhood without a strong will to survive (and believe us, she is strong willed!). Orphans with clefts have learned to successfully navigate their environments without a lot of special treatment from the world around them.
Cleft kiddos have learned to make feeding work for them despite physical challenges. You are not going to break them and they're not going to starve when you get home just because you don't know the first thing about cleft palates. They have mastered their own feeding techniques, which often include shaking their heads to move food around their mouths, because they can't use their palates for leverage
Don't be too worried about early childhood delays. Because of a far harder-than-average start in life, it is normal for cleft orphans to be very small and significantly speech delayed. "Normal" delays from institutional care can be compounded by the cleft palate. Our daughter was a mere 14 pounds at 18 months of age and had only one discernible word when we met her ("kukla", which means doll in Russian). In the past months her vocabulary has simply exploded and her words become increasingly more discernible as she learns to use her "new" mouth and works with her speech therapist.
You probably just have to accept that you'll never know what caused the cleft. Maybe you'll get some family history that can help you understand what happened, maybe genetic counseling will help you diagnose the root cause, but most likely it will be a part of your child's biological and gestational history that you'll never really have the answers you want. Many biological parents of cleft kids walk this path as well.

If you know about your child's cleft before adoption, you have the opportunity to prepare in many ways:

Research your medical insurance and get your insurance ducks in a row before traveling
Choose a hospital and surgeon. After examining your child they will finalize the treatment path, but choosing a surgeon before travel will eliminate one more to do item when you return, exhausted and overwhelmed, from your adoption travels
Learn baby signs. Depending on your child's age, we definitely recommend learning and using sign language with your child. Sasha had physical impediments to speech, but she latched on to sign language within our first few weeks together and still often uses signs to communicate. Using sign language with Sasha was a godsend.
Talk with cleft adoptive parents. They will encourage you, remind you that you are up to this challenge, and share their own tips and tricks that were helpful in their first months home with their child. You can find other cleft adoptive parents through Yahoo and Google groups and your domestic and international agencies.
Be real with yourself and have extra grace for your spouse. Try to mentally adjust to the idea that you will probably have more than "average" (whatever that means) difficulty in your first few months home with your child. The fatigue and simple overwhelming nature of bringing a child into your home will be compounded by doctor's visits, surgery, speech therapy, and lots of chocolate running out of your child's nose before the cleft is repaired (this is adorable, by the way). It's hard. And it's worth it.

Welcoming Sasha into our family had been one of the most incredible and rewarding experiences of our lives. If you have the opportunity to adopt a cleft child, we definitely recommend that you evaluate and seriously consider your ability to care for this little one's medical, physical, emotional, and spiritual needs. And if this is the right path for your family, then go for it! Your child will teach you how to care for her, your doctors will guide you through surgery and therapy, and each member of your family will be richer and deeper for the experience.

What is Deletion 22?

2009-11-05T15:06:00.000-08:00

"VCFS -- also known as 22q11.2 deletion syndrome, Shprintzen Syndrome, DiGeorge Sequence and, regrettably, Catch 22 -- is caused by the deletion of a small segment of the long arm of chromosome 22 (specified as 22q11.2 deletion), and is one of the most common genetic disorders in humans. Velo-Cardio-Facial syndrome is typically characterized by cleft palate, heart abnormalities, learning disabilities, and over 180 other clinical findings."

There is a lot of great information as well as a support group that you can join here, and another great explanation here.

More to come...

How do I keep track of all those medications?

2009-11-04T13:28:00.000-08:00

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."

Goal: A No-No Bank

2009-11-04T12:37:00.000-08:00

Several parents in the group are working on coordinating to create a bank of alternative arm restraints that parents could borrow after surgeries. Hopefully some will be ready to go soon, but for those parents currently struggling with restraints - hang in there! Once we have it organized I'll post more information about borrowing from and contributing to the bank here. Thanks to Teya for lending out her Baby Hands Down and inspiring the project!

Homemade No-No's

2009-11-04T12:33:00.000-08:00

Here is a type of homemade arm restraint that may be easier to keep on your baby.

The strap around the back helps to keep them on, and since they are made of fabric, they are soft and possibly less irritating than the hospital-issued Snuggle Wraps. You can see the pattern for these restraints here if you'd like to try to make them yourself.

A Beautiful Child

2009-11-04T12:20:00.000-08:00

Virginia Smiles, an organization for families of children with clefts in Virginia, has this wonderful video that I would definitely recommend to new/expecting parents. You can view it here. It is mostly interviews with parents who share their thoughts and experiences, and is really touching. Thank you to Anna for sharing this!

Enjoy!

Before & After: Jimmy

2009-11-04T08:16:00.000-08:00

Three weeks old

A few hours post-op

About 1 year post-op

4 years old

Jimmy has a unilateral cleft lip and palate. His surgeon is Dr. Warnock. You can see more of Jimmy and his family at their blog, here.

Before & After: Johnny

2009-11-03T13:08:00.000-08:00

Newborn

Big Smile

After lip repair

Johnny has a unilateral cleft lip and cleft palate. His surgeon is Dr. Morales.

Before & After: Jimmy

2009-11-03T10:01:00.000-08:00

Brand New!

Cute Wide Smile

Just after lip repair

A few weeks post op

2 years later

Jimmy has a unilateral cleft lip and cleft palate. His surgeon is Dr. Morales.

Baby Hands Down

2009-11-03T08:07:00.000-08:00

These arm restraints aren't in production anymore, but if you can find one already in existence a lot of parents like them better than the snuggle wraps provided by PCMC because they allow for more arm movement while still keeping the baby's hands away from their face. Below are lots of detailed pictures of how the restraint works and how it's put together. Thank you to Teya for providing this! Here is the information about the restraint from Teya:

"The first couple of photos are of just the restraints itself; then I have some photos of my son and how it is put on him, then there are some up close photos of the stitching and how they stitched the straps together. My son is 6 months old and weighs about 15 pounds. The strap around his waist measures 19" long, the two straps that go between his legs are 14" long (these could have been an inch or so longer), the wrist part measures 3" long from the bottom of the loop to where it attaches on the cuff, and the cuff measures 5" long and 1" wide. All of the pelvis straps are 1" wide."

Counting Down to Surgery

2009-11-02T23:58:00.000-08:00

This is an excerpt from my personal blog from before Ethan's second surgery.

We are down to 2 days before Ethan's lip and nose repair, and I still don't think it has hit me yet. I don't know what exactly is supposed to be hitting me, but it seems like something should. I am always a little hesitant to talk a lot about how I'm feeling with all this (particularly on a blog), but it has helped me to hear other people's experiences through the cleft palate group on Yahoo! Groups here in Utah, so I'll share at least a little.

I think that I went through a lot of emotions between the time we found out that Ethan had a cleft and the time he was born, but since then I have really felt like things have been pretty normal overall. But I think that this surgery will be a bit harder, because I am slowly realizing that pretty soon I won't be seeing the same little face anymore.

I think that if Ethan were really sick and suffering already it would seem natural to have him go into surgery because it would only improve things. It's a little tougher taking my little guy in when he is so happy and doing so well; I almost feel like I'm inflicting it on him, even though I know it isn't really an option not to do it, and he really will be grateful his whole life that I did it. And compared with so many other conditions that exist, Ethan's is relatively mild, and we feel really grateful for that, too.

So I am bracing myself a little bit for whatever it is that I'm sure will hit me when we take him in on Thursday, taking a little extra time to be grateful and enjoy that wide little smile while we have it, and looking forward to all of this being overwith!

Milk Money

2009-11-02T23:51:00.001-08:00

I was reading some random site online like I like to do, and saw several people mention that they spend about $120 a month on baby formula. So I proudly announced to my husband that by pumping I was saving us $120 a month. Being the numbers man that he is, he of course had to spoil it by figuring out how much per hour I was "making" by pumping. Six times a day, times about half an hour each time for the whole ordeal, times 30 days a month... Turns out I am "making" $1.33 per hour. Awesome.

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

2009-11-02T22:29:00.001-08:00

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.

Cleft No More - Sasha's Cleft Repair

2009-11-02T22:21:00.000-08:00

This is Jamie Morningstar's experience with her daughter's cleft palate repair at PCMC. They adopted their little girl from Kazakhstan earlier this year. For more of their experiences, you can visit their blog here. Thank you, Jamie, for sharing!

Today will not soon be forgotten in the Morningstar family! It started well and ended well... the middle part wasn't quite so good but hopefully that part will fade from memory quickly.

Sasha's surgery was scheduled for 2:30 pm and she wasn't allowed to eat all day. I thought that would be truly awful, but to be honest it was rather disconcertingly fine. Steve has a theory that since her meals were so regimented at the baby house, she hasn't yet learned to listen to her body when it comes to being hungry and full. I'm not sure if that's true or not, but you would think that a two-year-old would have strong negative opinions about not being fed all day and Sash just took it like a champ. We kept her busy and distracted and she did ask for food a few times, but surprisingly it was never a battle.

We got to Primary Children's Medical Center at 1:15 and went through the intake process just fine. We were told that the doctor was running a little behind (no big surprise there) and had a good time playing in the pre-surgery waiting room. Then we were told that the doctor was running a lot behind and we probably wouldn't get in to surgery until 4. Sigh.

But Sasha was fabulous. She happily blew bubbles, ate bubble solution (she wasn't supposed to eat or drink, but I don't think bubble solution counts), took rides in the little plastic cars, and otherwise occupied herself for the full 2 hour wait! What a kid.

At 4:00 she had a sedative and her craniofacial doc and ENT (Ear Nose Throat doc) chatted with us about the procedures. By that point she was really loopy and was happy to lay down in the wagon and go with the anesthesiologist. It was go time!

Steve and I made ourselves comfortable in the parent's waiting room and just a few minutes later the ENT came out and told us that the ear tubes went in just fine and she has infections in both of her ears (not super-surprising, that's the whole reason she's getting the tubes) but that the normal drops they prescribe after inserting tubes should also take care of the infection. One procedure down, one to go!

The cleft palate repair took another two hours, but it all went just as expected and the plastic surgeon was able to get all of Sasha's mouth parts into their proper place. He remarked again about how wide her cleft was - we just responded that when we Morningstars commit to something, we go all the way!

He was able to get the whole center part of her palate just where it belongs, which is awesome. Right now, it sort of looks like she has a strip of plate down the center of her mouth and she still has gaps on either side, but Dr. Siddiqi said that's normal and those gaps will heal right up in a couple of weeks without additional surgeries.

After meeting with Dr. Siddiqi after he was done with Sasha's surgery, it was time to go get our baby girl from post op. Begin suckiness.

As she was sedated, the swelling in her mouth from the operation started to obstruct her airway, so they gave her meds to wake her up from the anesthesia instead of letting her rouse naturally. Those meds immediately flushed all of the pain meds and sedatives from her system, which meant that she was feeling everything. I walked into post-op past this kid screaming bloody murder thinking, "wow, I'm glad that's not my kid" - you guessed it, that was my kid.

Of course, the choice between a breathing baby in pain and a baby who isn't breathing is an easy one to make! We spent the next two hours with a screaming, hurting, bleeding, restrained, miserable, and angry Sasha trying to calm her down and keep her blood oxygen levels up. It was awful. Really, beyond words, awful.

But we have a great nurse who worked really hard to find the right meds that were safe for Sasha and kept the edge off of her pain and by about 9 pm she had finally calmed down enough to sleep. Her pulse has stopped racing, blood pressure is normal again, her oxygen levels are doing great, and she's finally at peace.

So we're hoping that tomorrow will be a whole new day. She already had a few ounces of apple juice to drink, which is awesome, and we're allowed to feed her mashed potatoes if she wakes up and is hungry. The arm restraints come off tomorrow, which is fantastic because Steve and I were expecting her to have to wear them for weeks. We may be discharged tomorrow or we may need to wait until Friday, we'll just wait and see what tomorrow brings and how quickly she bounces back.

It's so funny - she already sounds different! Even her crying doesn't sound like it used to. Before surgery, I was sort of mourning her cleft. That probably sounds insane, but it's been a big part of the Sasha we know and love and I was sad to see it go. But now that I hear the beginnings of what her little voice is going to sound like (granted, those beginning were mostly screams, making it all slightly less touching) I know that this is right and good.

Say What? ... Cleft Vocab

2009-11-01T22:35:00.000-08:00

There are a lot of new terms that come along with learning about clefts. For brief explanations, there is a great glossary at the Cleft Line site, here.

I also find a lot of more thorough explanations on Wikipedia, though they aren't generally explained with reference to clefts.

What if my baby gets sick before surgery?

2009-11-01T21:56:00.000-08:00

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.

Tongue-Lip Adhesion

2009-11-01T17:16:00.000-08:00

For children with Pierre Robin Sequence, a tongue-lip adhesion may be performed aid with breathing. There is a detailed article here that has lots of information.

Here is a picture of a sweet little one just after her tongue-lip adhesion, so you can get an idea of what it looks like.

Thanks to Amy for the reference and picture! And, as always, more to come...

Surgery Timeline: Dr. Morales

2009-11-01T11:45:00.000-08:00

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).

Mandibular Distraction

2009-11-01T11:07:00.000-08:00

In the case of Pierre Robin Sequence, a cleft palate is associated with a small jaw, which presents additional feeding and breathing problems for children. Often, a mandibular distraction, or surgery to pull the lower jaw forward, is necessary. The site from the Pediatric ENT Associates here provides an overview of mandibular distraction, some parent experiences, surgery advice.

As always, more to come soon...

How do I prepare my child for surgery?

2009-10-30T14:23:00.000-07:00

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...

Dealing with Insensitivity

2009-10-30T14:15:00.000-07:00

I have a lot to learn from my husband. I am generally pretty easy-going as far as dealing with people, but if you do something potentially offensive to a loved one, I turn into a fighter (I'm soon to be a lawyer; what can I say?). While John brushes things off, I get offended on his behalf. But he doesn't get ruffled, and sets a great example.

The last two years there has been a 5K and 1 mile walk in Provo Canyon that benefits Project Smile, a group that travels to developing countries to provide surgeries for children with clefts. We did the 1 mile walk this year (Ethan was a month old, and I wasn't about to be doing any running...). A short time ago John was wearing his shirt from the race in one of his classes, and a classmate noticed it. He asked if John knew what Project Smile was, and John confirmed that he did. Then, with a smirk and a half-laugh, he asked John "Have you ever seen one of those kids?" and started to make some kind of face. Before he got the chance to go any farther, John calmly said, "Before you say anything that you may regret later, my son was born with a bilateral cleft lip and palate." The student became understandably sheepish, then attempted a recovery by saying that his company printed the signs for the 5K.

My brother-in-law, who is in the same class and heard the exchange, jokingly commented to John about what he would have liked to do to that particular student's smile. I was with him on that one... But I am definitely proud of John's reaction and that he redirected the conversation and then let it go. And it got me thinking again about something I've contemplated in the past: how do we help people to be sensitive to facial differences? Surely that student will think twice in the future before mocking a birth defect. Here are a few additional thoughts and observations that I have had:

Most people want to be sensitive and supportive when they talk to us about our kids, but don't know how. I try not to take offense when I see an effort being made, even if the way the words come out aren't exactly how I would like them. For example, before my son's lip and nose repair, I had a few people ask "Was he born like that?" My initial urge was to reply sarcastically, "No, I did that to him. What do you think?" But I refrained, because I know that if they are asking, it is usually because they don't know how to ask about a birth defect in a sensitive way. The word "defect" is a pretty harsh word when used in reference to a baby, so I notice that people avoid it, which is nice, but sometimes they have a hard time articulating the same idea with a different word.
Children tend to stare, and also tend to say everything that comes into their heads. I have heard lots of kids commenting that "He has an owie!" or "Mommy, did he go to the hospital?" or "How come his mouth is like that?" I figure that by explaining rather than being defensive, I am helping one more child to grow up to be a more sensitive person. And when I demonstrate that I don't mind their childrens' curiosity, parents feel more free to ask questions, too.
When I deal with people who are insensitive, I try to think about what I would like to teach my son about dealing with the same insensitivity as he grows. My hope is that my reactions can show him that we can be kind to others and share rather than getting angry or allowing our own self-esteem to depreciate.

Do you have any similar experiences or suggestions?

Surgeon Profile: Dr. Muntz

2009-10-30T10:41:00.000-07:00

Contact Information:

Harlan R. Muntz, M.D.

Otolaryngology - ENT
Head & Neck Surgery
50 North Medical Drive
Salt Lake City, Utah 84132

801-662-1740

U of U Profile

Parent Comments:
"We really like Dr. Muntz. I know he has done several ... [mandibular] distractions for people who are part of this group. He is an ENT doctor. He also specializes in repairing cleft palates if that is a concern for your child. I like being able to have one doctor be able to take care of all of our daughter's needs. If your [child] has a cleft lip or something external, you will most likely need a plastic surgeon."

"Dr. Muntz is a GREAT ENT. He's been my son's 4th ENT and we LOVE him. He's put in tubes, removed his tonsils/adenoids and dealt with Ayden's sleep apnea wonderfully! That being said, I would not use an ENT for any kind of recontructive surgery like cleft repairs."

"Dr. Muntz is a great doctor. He is our son's ENT. He put tubes in at 2.5 months and has been checking up on our son ever since. I really like how positive, quick, but thorough he is. We've never seen anything that we didn't like in him."

"He is great and has an excellent bed side manner."

"I like Muntz as an ENT for personal reasons--he has an EXCELLENT bedside--which is good to have with an ear doctor when they are in pain."

"My son is seen by Dr. Muntz. We love him!!! I can not say enough praises about him, and the amazing surgeon he is. He preformed a Mandibular Distraction and repaired his cleft palate. The mandibular distraction is a HUGE surgery and I never once doubted the surgeon we choose. He often calls us in the evenings so my husband and I can both be on the phone when he tells us results from testing. There was never a time we could not get ahold of him, even in the middle of the night. And, he is always willing to see us on the spur of the moment, even if that means our appointment keeps him at the office till 7 at night. My husband is in his final year of medical school and he has decided to become an ENT because of Dr. Muntz. Good luck with your decision. It is a big one, but I know you will be pleased with any of the doctors at Primarys."

Before & After: Ashlyn

2009-10-29T12:18:00.000-07:00

Ashlyn before surgeries

Just after lip & nose repair

Two months after lip & nose repair

Several months after lip & nose repair

Ashlyn has a unilateral cleft lip and palate. Her surgeon is Dr. Morales.

Special Bottles

2009-10-28T23:36:00.000-07:00

There are a variety of bottles/nipples that are made specifically to help babies with clefts to eat. There is a quick description of the available bottles with pictures at the Cleft Advocate site, though there are several that you probably won't be able to find locally.

At Primary's LeAnn generally recommends trying the Pigeon nipple attached to the Mead Johnson squeeze bottle or a Playtex VentAir bottle with drop-in liners. I'll add more tips about this configuration, and possibly some pictures, as I collect them. Some speech therapists recommend this nipple because it allows the baby to do all the work and control the flow of the milk. The Pigeon nipple runs between $4 and $6 each.

The Mead Johnson squeeze bottle also comes with an elongated nipple with an x-cut opening, and some parents find that this nipple works well when their baby isn't getting enough milk with the Pigeon nipple, since there is no valve and the caregiver can squeeze the bottle to increase the flow. This is also one of the cheapest configurations, since a box of 6 Mead Johnson bottles complete with nipples runs between $16-$18 (and you can often get them for free from the hospital during your stay there).

Others use the Mead Johnson bottle with Similac or Nuk orthodontic nipples (the kinds they use with premies that have low suction).

The Haberman is another type of bottle that allows the caregiver to squeeze milk into the baby's mouth. The main drawback for this bottle is that they are expensive; upwards of $30 for each bottle. If you find that this bottle works best for your baby, you may try asking your pediatrician or surgeon if they have any that they can give you, as some parents have received a few this way.

There are video tutorials on feeding your baby at CleftLine, here (thanks Jennifer!). There are specific tutorials showing how to use the Enfamil (Mead Johnson), Haberman, and Pigeon bottles, which are fabulous.

This post (and pretty much all posts on this blog) will be under construction as I collect more information and input from parents!

A little self-congratulation?

2009-10-28T23:04:00.000-07:00

How to change a Logan's Bow at 3:30 am when it falls off (without waking up your husband and all your neighbors):

1. Slowly remove the medical tape that is no longer holding the metal bow on properly from your baby's face in such a way that he doesn't scream. Don't mind that the nurses at the hospital that did this last cut the tape so long that it went into your baby's hair, so having it pulled off may be like getting his little sideburns waxed.

2. Cradle your already-cranky, recovering baby that has only let you sleep maybe 10 out of the last 72 hours in one arm while you collect supplies: medical tape, scissors, 3M prep pad.

3. Set your supplies down within arm's reach, then sit on your exercise ball, still with the baby in one arm, and bounce lightly to keep him snoozing, since you're not supposed to let him cry (ha!) especially without the bow keeping pressure off his sutures.

4. Hold the roll of medical tape in the same hand that's holding the baby, and with the other, cut the tape to the appropriate width and length and secure it on the bow. Don't stop bouncing, or he'll be screaming shortly.

5. Open the 3M prep pad that makes your sweet baby's face smell like Scotch tape (and which, by the way, your baby hates), and rub it on his cheeks where the tape will go, still without waking him up. Put the pad back in it's little packet and make sure to save it, since you only have 5 of these to last you a month, and they don't carry them at the local pharmacy.

6. With one hand, somehow squeeze your baby's cheeks in slightly and tape the bow down at the same time. Make sure it's stuck down tight in just the right spot, or you may have to do all this all over again.

7. Now that your baby is fast asleep, get him to take his baby Tylenol and drink another ounce of milk so that he doesn't wake up again in 10 minutes, hungry and in pain. Then place him quietly back in his crib to slumber while you stay up for another 30 minutes to squeeze out his next meal, and maybe blog about the whole experience while you're at it.

I wrote this post for my personal blog in a moment of euphoria after pulling off what I just described. I hope that it brings you a smile, and reminds us all that we should both give ourselves some credit for rising to the occasion when our kids need it and be thankful for the help we receive - both earthly and divine.

Before & After: Parker

2009-10-28T21:21:00.000-07:00

Parker before surgeries

Parker after surgeries

Parker has a unilateral cleft lip and palate. His surgeon is Dr. Siddiqi.

Before & After: Drew

2009-10-28T21:16:00.000-07:00

Newborn Drew

Drew after surgeries

Drew has a unilateral cleft lip and palate. His surgeon is Dr. Siddiqi.

How do I keep the arm restraints on after surgery?

2009-10-28T13:39:00.000-07:00

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!

Before & After: Preston

2009-10-28T13:03:00.000-07:00

1 week old

Just after first surgery, 2 months old

Just after 2nd surgery, 6 months old

8 months old

Preston has a bilateral cleft lip and palate, and his surgeon is Dr. Morales.

What is Pierre Robin Sequence?

2009-10-27T14:10:00.001-07:00

There is a short explanation at Wikipedia, here, another at CleftLine here, and some great resources at the Pierre Robin Network, here. Also, if you'd like to communicate with parents of children with Pierre Robin Sequence (PRS), the Pierre Robin Network also has a Yahoo! group akin to the Kids With Clefts Utah group, and you can join here.

Thanks to Amy, Jennifer, and Jamie for the resources! We will be posting more information soon!

Before & After: Ethan

2009-10-27T12:44:00.000-07:00

3 months old

Just after surgery, 3 1/2 months old

8 months old

17 months old

Almost 3 years

Ethan has a bilateral cleft lip and palate, and his surgeon is Dr. Morales. You can click on the pictures to get a bigger view.

What will the hospital room be like?

2009-10-26T22:05:00.000-07:00

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

2009-10-26T21:40:00.001-07:00

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!

A note on choosing a surgeon

2009-10-26T19:30:00.000-07:00

I have tried to put together a snapshot of the surgeons that work at PCMC, including comments that parents have made about them. However, I found that this was only semi-helpful because everyone had so many good things to say about all of the surgeons. A recurring pattern in messages among the Utah Kids with Clefts group goes something like this:

"Our surgeon is Dr. So-and-So. We LOVE him. He does amazing work, and we like such-and-such about his personality and/or practice. But we have heard great things about all of the surgeons at PCMC, so you really can't go wrong."

While it is nice to know you can't go wrong, it doesn't help in the narrowing-down process for new parents that just want some direction. So you may want to contact the surgeons or even meet with them individually, and keep a couple of things in mind:

Personality matters. Handing your little one over to a doctor is a hard thing, and even if you know your doctor will do a great job, it's tough when you don't mesh with their personality. Some people will love a doctor's bedside manner, and others will hate it. See how you feel, because everyone is different.
Although most of the doctors at PCMC have similar timelines, there are some definite differences, including how they mold the child's lip or palate (using a removable molding device, a chain, or a surgically implanted prosthesis), how they do bone grafts (removing bone from the hip or using a chemical protein), etc. Talk to parents that have experienced both, and see how you feel (this is where joining the group is a huge help!).
Who does your insurance cover? Usually you will have a choice between a couple of surgeons, but your insurance may narrow things down for you.

As a side note, in the profiles of each surgeon I tried to include comments that were more telling about the surgeons than "We love him!" There were many, many comments to that effect about all of the doctors. I also tried to take a representative sample of the comments without having any bias toward my son's surgeon. But so you know, we use Dr. Morales, and you can take that into account when considering the comments that I have included.

Join our group!

2009-10-26T17:08:00.000-07:00

If you have a child with a cleft being treated at Primary Children's Medical Center, please join our Yahoo! Group! It is a great way to meet others, become aware of events, and get quick, personal, specific advise. We all benefit from sharing our experiences and helping and supporting each other. There are also lots of pictures posted if you would like to see the work of the PCMC surgeons. Just go here and sign up!

Surgeon Profile: Dr. Warnock

2009-10-26T16:54:00.001-07:00

Contact Information:

Steven H. WArnock, M.D., F.A.C.S.
Premier Plastic Surgery Group of Utah
11762 S. State Street, Suite 220
Draper, UT 84020

(801) 571-2020

Wasatchplasticsurgery.com
(note: the website is for all plastic surgery, and doesn't particularly address cleft palate repair, though it does review his education, credentials and awards. Don't be surprised if some interesting before/after pictures of other cosmetic surgeries pop up. This is the case for all of the surgeons' websites that I've visited)

Parent Comments:

"Dr. Warnock has been our surgeon and he has been excellent... We have appreciated Dr. Warnock's bedside manner and his willingness to spend a lot of time explaining procedures and reassuring us. He has also been open to alternate timelines for repairs, which worked for us since we wanted [our baby's] soft and hard palate repaired simultaneously at 9 months rather than wait until age 3 or 4 for the hard palate repair."

"Dr. Warnock... was great. I really felt like he answered all of my questions and was willing to take the time with us and our son. He explained the surgeries and what they would be doing in each of them."

"He is AWESOME! He did such a wonderful job on my son. People don't even know about the cleft unless we tell them anymore. We fly from [far away] to Utah for his surgeries and Warnock is so worth it."

"...We love him. I think he is excellent and has done amazing work on our sweet boy. He is such a kind man."

"He is so patient and willing to talk and answer questions any time. We have also emailed a few times and I have even sent him pictures... and asked for comments on healing."

"My son had a bilateral cleft lip and palate ... and we have Dr. Warnock. I'm so pleased with him, his mannerism and his openness to discussing options and really taking the input and opinions of myself and my husband into account. Dr. Warnock's bedside manner is great and he's always been very patient and very understanding. His staff I also have to comment on, since they are fantastic as well."

"I think he is awesome, he answered all of our questions and really put me at ease as far as the surgeries go."

"We see Dr. Warnock as our plastic and I LOVE him!! He is so good ... all of our questions. He is also so patient with our daughter!! Can't say enough good about him!!"

"I really like Dr. Warnock. He was able to answer all of my questions(I had a lot) He explains things very well and truly loves what he does."

"He has lots of experience and a good bedside manner. He is always open to questions and is good to responding to my emails. I tend to ask a lot of questions and bring up concerns, but he has always made me feel comfortable and willing ti accomodate my needs."

"Dr. Warnock did a beautiful job and he made us feel comfortable before and after [surgery]."

"Dr. Warnock ... is amazing. He takes the time to answer your questions and is very thorough. He did an amazing job on my babies soft palate repair. Dr. Warnock also trained under Dr. Morales 8 years ago and is really good."

"Dr. Warnock is our surgeon and he is wonderful. Very skilled, very professional, and very personable as well. No question too dumb! ;)"

"We used Dr. Warnock, and we have been very happy with him so far ([our son] has only had 1 surgery at this point). He is very good to answer questions and to listen to concerns. We also appreciate that his office is in Draper, since we live in Utah County."

"We used Dr. Warnock and love him. I felt very comfortable with him and he was very thorough in explaining what was going to happen and how to proceed. I asked a lot of questions and he really took the time to answer all of them and put me and my husband at ease!"

Surgeon Profile: Dr. Siddiqi

2009-10-26T16:48:00.003-07:00

Contact Information:

Faizi A. Siddiqi, M.D., F.A.C.S.
The University of Utah Division of Plastic Surgery
30 North 1900 EAst, 3B205
Salt Lake City, UT 84132

(801) 581-5132

faizi.siddiqi@hsc.utah.edu

U of U profile

Parent Comments:

"We have used Dr. Faizi Siddiqi as our plastic surgeon and he has done a wonderful job... We were actually refered to Dr. Siddiqi [someone] who worked in same day surgery up at PCMC... She did a poll with all of the nurses up there and asked if they had a child with a cleft, who would they choose to do the surgery. Almost all of them said Dr. Siddiqi, so that is why we chose him and we are so glad we did."

"...He has been wonderful. I think his work is great, and he has an excellent bedside manner. He has done multiple prosthesis insertions/changes as well as [our baby's] lip repair, soft palate repair and hard palate repair. He also did a couple laser treatments to help decrease the redness of [our baby's] lip scar (the scar is a bit red because of genetics and the way he heals, not because of the surgeon) He has really gone out of his way to help us and to accommodate our needs rather then his...I'm sure you'll love him."

"We have used Dr. Siddiqi as our surgeon for both of our boys. We love him so much and he is so good to our kids."

"Our surgeon is Dr. Siddiqi and we LOVE him. He has performed miracles for both of our little boys and we will forever be grateful to him for the beautiful work that he has done. "

"He does such a great job and has great bedside manner. He is so patient with all of our questions and our kids really like him. "

"We ... like how personable Dr. Siddiqi is, and he has a great sense of humor."

"We went with Doc. Siddiqi and loved him!! He really took the time to make us feel comfortable before she had her surgery as well as after. He has great bedside manner and really takes the time to answer any questions we may have had. [Our baby's] lip looks amazing!!!!"

"I found out Dr. Siddiqi does a new procedure using some kind of protein stuff instead of bone. They have had wonderful success with it and recovery time is so much easier and faster. The protein actually makes their old bone grow new bone.... I heard people and medical professionals say how well Dr. Siddiqi does on the mouth and lip repair so I went to see him at Primary Children's Hospital. I'm glad I found him."

"We chose Dr. Siddiqi because he took time out of his day to come see my twins [one] has UCLP [the other] has BCLP a couple days after they were born. They were in the NICU at the time and he had the nurses tape the lips closed. I think that helped a lot with stretching the skin. I like him a lot he is the kind of doctor me and my husband love. Not sooo grumpy but will tell you what you need to know and all the other stuff. My one twin couldn't go home when the other one was ready so he gave us the choice to keep them both in or take one home. We decided to keep them both in I thought that was super cool of him."

Surgeon Profile: Dr. Motoki

2009-10-26T16:48:00.001-07:00

Contact Information:

David S. Motoki
Premier Plastic Surgery Group of Utah
11762 S. State Street, #220
Draper, UT 84020

(801) 571-2020

http://www.wasatchplasticsurgery.com/

Parent Comments:

"We have been with Dr. Motoki from the very start and love him. [Our child]'s lip looks so good."

"My daughter's surgeon is Motoki, he is awesome. At first I didn't think that he had very good bedside manners, but as time has went on, he has gotten alot better. I was devastated at first and had a lot of questions, and his receptionist ... was great, explaining things to me, every time we went to his office she would come sit by me and talk. And I would even call her on the phone with questions and she would take time to talk to me."

"I would recommend Dr. Motoki. We have been with him from the begaining and he has always done a wonderful job with the repairs. I've never felt uncomfortable asking a dumb question, and he explains things well... He's been good at what he does, putting us at ease and treats us with respect. Sometime a specialist can come off high and mighty and I never get that from him."

"We have Dr. Motoki and we love him. I also love his staff."

"He is wonderful, and conservative, which I love!"

"His work is awesome."

"We chose Dr. Motoki and have been really happy with him so far. He's not the best at small talk, but you know he'll be straight with you about the good and the bad things that can happen. My husband and I really need that. Also, we can always get in touch with his nurse (who is super friendly and nice!) when we have questions."

"We also use Dr. Motoki for [our child]'s cleft palate and he has been wonderful. I don't know if you know this but Dr. Morales trained him 20 years ago and we are confident in his skills. I could go on and on about some other reasons why we chose him but I won't bore everyone with that. I have been very frustrated with other Dr.s on the team and Dr. Motoki has validated them and supported our choice to have [our child] treated by another ENT. So remember when choosing a surgeon there are a lot members involved and the surgeon is a small portion, but very important one."

Surgeon Profile: Dr. Morales

2009-10-26T16:47:00.001-07:00

Contact Information:

Dr. Louis Morales Jr., M.D.
5089 S. 900 E., Suite 100
Salt Lake City, UT 84117

(801) 743-0700

pclmoral@IHC.com

louismoralesmd.com
(note: the website is for all plastic surgery, and doesn't particularly address cleft palate repair, though it does review his education, credentials and awards. Don't be surprised if some interesting before/after pictures of other cosmetic surgeries pop up. This is the case for all of the surgeons' websites that I've visited)

Parent Comments:

"We use Dr. Morales and we love him. We have 2 little boys with clefts ... Dr. Morales has done all of their surgeries ... so we have a great deal of trust and respect for him."

"Dr. Morales is our surgeon, and we LOVE him. He does an excellent job. He is great with [our child] who is a busy, talkative [boy]. He has been [our son's] surgeon since birth... I would
HIGHLY recommend Dr. Morales, He is simply the best. He is calm and reassuring and he always takes the time to answer all my questions and concerns about a procedure."

"My opinion is that Morales does the best lip repairs. We have Schmelzer and we really like him. But, I still think Morales is best for lips. I like Schmelzer's time-line for other surgeries better, but if you are only dealing with the lip and not the palate then I would definitely vote Morales." (Dr. Schmelzer was Dr. Morales' partner, but now has moved to Arizona)

"We have used Dr. Morales ... and just love him. He has been practicing for over 25 years, so he is very well experienced and he continually amazes us with the work he has done."

"Everyone has their own experience and every cleft is different, but what Morales did for both of my sons worked very well for their speech. He also assured us that he uses his technique for a reason and that he has had not only very good speech results this way, but also a very low rate of a need for p-flaps. I'm not trying to say that one doctor's way is better than another, but with both of my boys, the way he has repaired it has really made for optimal speech results, so I have a lot of faith in it. "

"Our surgeon is Dr. Morales and I do personally think he is the best. We are SOOOO happy with the results!!!! You really can hardly tell that he had a cleft now and it was very severe when he was born."

"My son ... had 5 surgeries in the first year of his life Dr. Morales is his surgeon. I am very happy with the care and time he took with [my son] and answering all our questions."

"We had Dr. Morales and we were ... warned of his bedside manner. I thought he did a wonderful job and he was always very nice when we met with him."

"We have Dr. Morales and have had a really really wonderful result. A lot of people don't like his bedside manner but we think he is an artist when it comes to surgery. My son has a BCLP and it was quite severe but now you can hardly tell."

"We have Dr. Morales at PCMC. We LOVE the results of our son's surgeries so far. He doesn't always have the best bedside manner - very professional but not extremely friendly - but we think he is an amazing surgeon."

"Dr. Morales is very well known throughout the country in craniofacial and cleft reconstruction. He had been handing [my child's] case, but then suggested that we have Dr. Schmelzer [perform one particular procedure]. Dr. Morales felt that Dr. Schmelzer had more experience with the apparatus from training under Dr. Ferron in Dallas. I was extremely impressed with Dr. Morales that he would put his ego aside and suggest that another surgeon perform the procedure."

"Our surgeon is Dr. Morales and we think he's fantastic! (The only complaint I've heard about him from anyone is that his bedside manner leaves something to be desired, he's not the warm, fuzzy kind of doctor, but we've never had anything but positive experiences with him.)"

"Dr. Morales did [my child's] lip/nose repair. Totally amazing job, but I feel that my office visits lacked, so I changed to Dr. Warnock... I do not enjoy saying that I changed from Dr. Morales, but I am too sensitive and his bedside was really bad during a hard time for me."

"A family member asked the coordinator of the craniofacial team at Loma Linda (in California) if she recommended anyone from PCMC, and she immediately recommended Dr. Morales. So far he has done our son's prosthesis and lip repair and has been amazing. He is pretty to-the-point in our appointments, but we like that about him, and he is friendly and glad to answer our questions. And we love his staff, too!"

"I also was born with a cleft lip/palate. Dr. Morales did the last few surgeries that I needed. In those few surgeries, he revised several of the surgeries I had already had... Almost every single person that finds out about my birth defect are amazed at my repair. They can't even tell I have a cleft lip/palate... Dr. Morales is also who was recommended by my ENT and pediatrician...
As a mother, what I have not liked about Dr. Morales is not all important information was shared with us. For example, somehow we weren't told about the restraints required for TWO MONTHS until after his surgery. It really hasn't been that big a deal ... BUT, the surgery was quick and efficient... Also, if bedside manner is super important to you, you may not like Dr. Morales. Although, my husband thought he was fine."

What is the cleft palate "team", and when should I meet with them?

2009-10-26T16:34:00.000-07:00

The following are some guidelines provided by LeAnn Roling, the Cleft Palate Clinic Coordinator and Primary Children's Medical Center:

The team is made up of:

Dr. Yamashiro - team director, orthodontist
Ear, Nose, and Throat Doctor
Plastic Surgeon
Speech Therapy/Feeding Specialist
Social Worker and social work survey
Finance person from the Utah Department of Health
Audiology Visit
LeAnn Roling, RN - Cleft Palate Clinic Coordinator

If your little one is not having problems with eating, failed hearing screens, or ear infections it is ok to wait to see the team until 12-14 months of age. At that age we want to start working on speech and want the entire team involved.

You will come to team before that if:

Your surgeon requests it
Your baby is having feeding problems and/or any kind of concern that several members of the team should address.

Then we will plan to see your child once a year in the team setting, but of course you will follow up with single members of the team more frequently than that.

What is a Cleft?

2009-10-26T16:27:00.000-07:00

There is a fairly thorough explanation about the nature of cleft lips and palates on Wikipedia. Anna also gives a great explanation on her blog, "Cleft Notes," here. Essentially, a cleft is an opening that is left in the lip and/or the palate (roof of the mouth) when they fail to fuse normally during gestation. It occurs in about 1 in 500 to 750 births, but that number is closer to 1 in 450 in Utah. It is the most common birth defect. The exact cause is unknown, though the condition can be hereditary. It is generally said that some combination of genetics and environmental factors likely cause clefts.

Getting Started

2009-10-26T16:00:00.000-07:00

The objective of this blog is to work in conjunction with the Kids with Clefts Utah group to provide information for parents and families of children with cleft lips and/or palates who are treated at Primary Children's Medical Center in Salt Lake City. Because our experience is with PCMC, the information here will be most relevant to children treated there. However, much of this information should also be helpful to all parents of kids with clefts, and so if you're visiting from elsewhere, welcome! I hope that this site can provide a user-friendly place to find information and shared experience from other parents. If you have something you can contribute to a topic please add your comments to posts. If you would like to contribute something longer, I would love to have you guest-post, so let me know. I think that all of us will be enriched by sharing both information and experiences. Thanks for visiting!