Feeding issues

I wanted to take some time to explain some of the issues that children with clefts have with feeding.

Here is a picture of Ethan with a soft palate cleft.

Judah has a cleft in his hard and soft palate, but it is possible to have either or, and variations of both. Both parts are very important for feeding and speech. The hard palate is in the front of the roof of your mouth and forms a partition between the nasal passages and the mouth. About midway back there are mucous membranes called 'rugae' that help facilitate the movement of food backwards. The rugae continues back into the soft palate which is composed of muscles.The muscles and soft tissue help you swallow and also regulate air during speech. In Judah's case, he is missing a portion of all of these. He also does not have a uvula (the dangly thing in the very back of your mouth). 

The first stage is bottle feeding. Children with cleft palate cannot generate suction. There are a few different types of bottles, but Judah used the Haberman. With the Haberman bottles, you keep pressure on the reservoir nipple so the baby's chomping and tongue movement helps the milk come out. There is no handing off the bottle to Judah to let him fend for himself, I have to manually feed him every bottle and that takes at least 20 minutes every time. Some babies cannot master this early on and require a feeding tube.

Can you imagine swallowing with your mouth open all the time? That is the only way Judah knows how, and that is also why palate repair is extra hard. He will have to relearn to eat since his current method will not work anymore. 

Weight gain is also a very important issue. Most babies with clefts do very well, all things considered, but when compared with other babies the same age, they are usually underweight. If a baby also has cleft lip, they have to achieve a certain weight and be steadily gaining to even be considered to have their lip repair. 

The second stage is purees or 'solid foods', which you generally begin feeding babies around 6 months of age. The absence of portions of the hard and soft palate make this very difficult. The first problem is that much of the food gets pushed up into the nasal passages and that can be very irritating. There is no partition to protect the sensitive parts of the inside of their noses. Imagine when something goes down the wrong way and it hurts so much! This leads to what is called 'nasal regurgitation'. Much of the food Judah eats comes right out of his nose, sometimes on its own, sometimes when Judah sneezes to clear it out. Again, the absence of soft palate makes it very difficult to swallow what food he does manage to get back far enough. Judah has had such problems with this that he is not able to eat pureed food on a daily basis and so he is still only eating bottles with cereal in them. Cleft moms spend a great deal of time trying to figure out what consistency allows their child to eat best.

Most babies have their palate repair around 10-12 months. Babies without clefts can usually start more easy to manage solids like dissolving puffs and other easy to manage foods around this time. These pose a choking hazard to cleft affected babies. I have tried these with Judah thinking they would just melt away and, even when I broke off tiny pieces, he chokes and gags and usually throws up because he can't manage to get it down.

Judah hates when I try to take pictures of the inside of his mouth, but sometimes I inadvertently catch one!

After palate repair babies must relearn to eat. They became accustomed to the ways they managed to eat before repair, so (beyond just the physical pain of being post-repair) these 'new' parts of their mouths are foreign and they must learn to adapt. However, the palate repair does not solve all problems. Once the palate is repaired, muscles that never existed before are now in the right place, but are not strong enough and it takes time to strengthen and develop them. It also takes a great deal of time for the palate to completely heal, so we must be careful of 'sharp' foods (like chips and crackers) that can harm the freshly repaired palate. Sometimes, the palate does not completely heal and leaves behind holes called 'fistulas' that end up causing the same problems as before repair, and also require additional surgeries to correct. Also, our children have many texture and taste aversions that last long into childhood.

Judah's birth/NICU photos

Click here to view these pictures larger

6 Months

A little late, but time for the 6 month update!

Judah's first half-birthday was April 24th. His doctors appointments always seem to be exactly on his birthdays and we visited his pediatrician that day. He was 27 inches long and 16.1 pounds. They said he looked great and everything was fine. We have to go back on July 24th because they want to do some blood work before his surgery to make sure he isn't anemic. His palate surgery is still scheduled for August 24th and we don't go back to Birmingham until the day before to do his pre-op stuff.

We feel incredibly lucky that he has healed so well in just 3 short months.

He is not crawling yet but he wants to so badly! He is doing so well with his pushups but can't seem to get anywhere (unless he's rolling there). Judah spends most of his time standing in his jumper...I think since he can't figure out this crawling thing he thinks he can just skip it and start walking. ;] He can also sit up by himself in short bursts.

It was nice not having to deal with anything 'cleft related' for a while... then we started trying solid foods, but as we tried more things we realized that it wasn't going to be as easy as we first thought. He gets really aggravated and you can tell he is uncomfortable, so to avoid him forming oral aversions that will impact him later on, I just don't push it right now. We are getting to the point now where he will soon get set up with a speech therapist to work with him and keep him on track. I can tell he is not making enough consonant sounds (so far just M) but he tries, and makes a lot of other sounds, squeals and growls.

 We went swimming for the first time a few days ago and Judah loves it! He splashes and rides around in his float; he especially loves it when there are other kids playing...he thinks he is so big and can play right along with them. Until something else comes up, this is how we'll be spending the next couple of months!

A Smile Changes Everything

Donate to Judah's fund for Operation Smile

Post-op Pictures

Results from the Array

Back in January when we saw the geneticists they ordered a CGH array, which is a blood test used to map out chromosomes to look for abnormalities. I was really caught off guard because we had already seen some doctors up in Atlanta and they did not mention anything about further testing. I asked the doctors in Birmingham if they saw any 'red flags' or anything abnormal that made them want to do this test...they said no, that it was more or less standard procedure because when you have clefting it can be part of a larger syndrome.
(I just realized I never posted about this!!) A couple of weeks later I got a letter summing up our visit and the genetics note said: "Judah, a 2 month old caucasian boy, has cleft lip and palate with minor dysmorphic features (bracycephaly, hypertelorism, narrow palpebral fissures, flat nasal root and low set ears) and failed hearing screening test. An array CGH was sent to screen for chromosomal abnormalities and we will contact his mother after the test result is back." Naturally, I freaked the hell out, because those things would be the 'red flags' I was asking about, and instead of mentioning these things to me in person, I get a letter that scares me so bad that I can't even look at Judah without sobbing because of the prospect of him having to go through more than he already has going on. In order, the terms listed mean flat head, eyes too far apart, the space between the upper and lower eyelid is too narrow, bridge of the nose is flat, and you can pretty much figure out the last one ;]. They have standards of measurement that they use and apparently Judah's is abnormal. So of course, as I'm googling these terms, they are bringing up things like Down's syndrome and other really scary things, and I'm freaking out even more. I talked to a few cleft moms, and in summation they said all of those things just mean a wide, flat face and they probably used overzealous terminology to justify the test for insurance purposes...SO, I tried to not think about it anymore.
Today I received a call with the results....he does not have any chromosomal deletions, or missing pieces, but he has an extra piece on both his X and Y chromosome. They do not know the significance of this (if there is any), and this is not related to nor did it cause his cleft. She said it may be that I, or Micah, or both of us have an extra piece and passed it down to him...we could have a blood test done to see, but honestly, we are both fine and if either of us have the extra pieces then they are obviously inconsequential. She said that as long as Judah is meeting his milestones and developing normally physically and mentally then there is probably nothing to worry about...and I think that if something were wrong then we would have been tipped off already...I was joking earlier that he is going to be superman and my best friend said maybe he'll be part of the X-Men ;]...anyway, all in all, it is GREAT news, because he does not have any other syndrome. I'll take it!!

Happy 4 months

Judah is four months old today and we are three days shy of 'officially' being one month post-op. Judah's appointment yesterday went fine, Dr. Grant said everything looks great.

He said it will take about 3 months before it is completely healed...we should be able to tell when all of his lip feels the same, right now it feels kind stiff where it was sewn together. We got the go ahead to start massaging his scar to try and help it relax a little more, but it could take up to year and a half before it completely lays down where it should (You can see in the picture above how the scar tissue has started to pull his lip up). Right now the scar tissue feels very tough and hard... hopefully massage will help break some of that up.
Overall, I feel like the recovery from his lip surgery went much better than I expected. Even though we had some difficulties in the beginning, it has not been bad at all. I figured Judah would be screaming non-stop or just miserable...he really surprised me by continuing to be good natured, as always, and it is just amazing how quickly he healed. Micah and I spent so much time worrying before the surgery about what Judah would look like after, and I can say now that it has turned out much better than I ever imagined.
We also set the date for his palate surgery yesterday...We go for his pre-op appointment on August 23rd and his surgery will be the next day on the 24th. He will stay a minimum of two nights, he will go home once he is able to eat enough to satisfy the doctors. Dr. Grant said the recovery from palate surgery is a little more prickly than the lip, and understandably so.
Dr. Grant has a book that he showed us when we saw him for the first time of before and after photos of surgeries he has done. I printed out pictures of Judah for him to put in the book and gave them to Dr. Grant at our appointment. He was so tickled and said they were 'delightful'. I am so impressed by the job he did and I thought he should be able to show that to parents of children about to go through surgery...hopefully it will comfort them knowing how capable a surgeon he is!
I am excited that we don't have to deal with much 'extra' stuff for the next six months and just get to go back to normal for a while. We are celebrating Judah's birthday by getting his 4 month shots today...what a birthday! ;]