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

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! ;]

Looking within

I had a friend ask me earlier if Judah would need more surgeries, that it didn't look like he would since his lip and nose have been repaired. I'm sure there are several others that don't understand what all is going on with his clefts and I would like to try and explain here.

First, Judah had a cleft lip which was repaired on January 27th. This surgery repaired his lip and he also basically had a nose job to rebuild the nostril that was flattened by the cleft. He may need a lip or nose revision down the line, when he is much older, based on need; then again, he may never need any more 'plastic' surgery to the outside of his face.

Judah still has a complete bilateral cleft of the hard and soft palate...basically, he has a very large gap in the roof of his mouth that runs from front to back. (Judah's cleft is much wider than this diagram depicts, but it is the clearest example I could find.)

When we go for his post-op appointment on the 23rd of February they will go ahead and set the date for his palate repair. It will most likely be in August or sometime around then...our surgeon generally does the palate repair when the child is 10 months old. To repair a cleft palate,the doctor will make an incision on both sides of the separation, moving tissue from each side of the cleft to the center of the roof of the mouth. This rebuilds the palate, joining muscle together and providing enough length in the palate so he can eat and learn to speak properly.

Sometimes the palate doesn't end up long enough so they require a lengthening surgery to improve speech. Also, the palate may not fuse completely after surgery and leave behind a hole called a fistula which would also need to be repaired later. There are a lot of ifs in that equation, but the only surgery he will definitely have is the palate repair.

He also has a complete cleft in the alveolar ridge. This is the part that holds your teeth. You can see his is all the way over in the right side of his mouth. Now that his lip is repaired the muscles will slowly cause it to migrate left to where it should be. Eventually, it should come all the way over to where it touches the other side, or at least comes close, and he will have a bone graft to fuse the two parts together when he is about 8 years old.

Since he has such a wide cleft he will probably have really wonky teeth. Once his baby teeth start to fall out we will be in touch with orthodontics to make sure there is sufficient bone for adult teeth to attach to. He may have teeth where they aren't supposed to be, like the roof of his mouth, that will have to be surgically removed later. He will also need speech therapy throughout childhood.

In summation, even though Judah now looks 'normal' on the outside, we still have a really long road ahead. There are a lot of variables that can occur for him to require more, but right now we only anticipate two more surgeries. If I have learned anything from his lip repair it's that nothing goes as planned, so I try to do my homework and learn about all the possibilities so I am not surprised. I am glad we have a few months now that we don't have to worry about much, but I am pretty nervous that we'll soon have a date to be dreading for such a long time. Hopefully his next surgery goes more smoothly than the last and there aren't any complications. If you guys have any questions, PLEASE let me know!! A lot of this is kind of hard to understand but I definitely don't mind explaining it.

A sorta fairytale

We arrived in Birmingham Thursday night. I had been dreading the night before surgery because I figured we would get no sleep; a hungry Judah is not a happy Judah. He normally eats about 4 ounces at a time and when we were preparing to feed him for the last time at 11:30 PM I told Micah to go ahead and give him 5 just so Judah could try to get as much as he could. He drank every last drop and slept until we woke him to leave for the hospital at 4AM. He must have known how important it was for him to eat and rest. He hardly cried until we went back into the waiting area where we spoke to the doctors, nurses and anesthesiologists. Once they started poking him he was not happy so I spent most of that time rocking and cuddling him.

Micah and I both held it together pretty well until it came time to walk him to the OR. We had to stop on some red tiles marking the point we could not pass and hand him to the nurse. Micah and I both kissed Judah and once I gave him to the nurse he looked at Micah and gave him the biggest pout I have ever seen and it just broke my heart. I will never forget that look. Micah and I started walking back to the waiting room but I just started crying and we stood there and hugged each other for a long time. It struck me that that was the last time I would ever see him like that. It was so heartbreaking.
When we got back to the room they gave us a pager and we went out to the waiting area. They told us it would be a while before we heard anything and when we got a page after 20 minutes it scared me. It was just the ENT doctor saying everything was going fine and they had put the tubes in his ears. He said there was a lot of fluid in them and the audiologist would perform a hearing test while Judah was asleep, and he passed for the first time EVER!
The next time we heard anything was maybe two hours later and Dr. Grant came out to let us know that Judah was in recovery and they had taken his breathing tube out and he was breathing on his own but was still asleep. I swore I remembered the doctor telling us that we would be able to go see him in recovery once he was awake, but when I asked him if we could go see him he said no, that we would see him when it was time to go to his hospital room. That bothered me a little but I didn't think a lot of it at the time. The doctor said he 'looked cute' and 'everything came together nicely' and 'it's a new face'...I didn't particularly like that last comment, and I was especially uneasy that we had been denied seeing him.
It was two more hours from the time we spoke to Dr. Grant that we finally were told we were going to our room. Micah and I went back to go meet Judah and saw his bed at the very end of a long hallway. My heart was beating so hard and it didn't help that Micah started humming something akin to the Jaws theme. I can't really explain what I felt when I saw him for the first time. He looked so small in the giant hospital bed they had him in. He was moaning in pain and looked so swollen. I can't even say that I instantly 'liked' the way he looked because it was so jarring seeing him like that, and it was just SO different from the Judah I handed over to the nurse just hours before.

When we got to our room I sat down and held him for an hour or so. He was so out of it and I spent a lot of time staring at him and trying to figure out how it would all look once his swelling went down. He would be fine one minute and then moaning and crying in pain the next. I had to go to the bathroom and when I got out everything was going to hell. He was having a very hard time breathing, was obviously in a lot of pain, and kept getting a panicked look in his eyes because he couldn't get a breath. The nurses started coming in and trying to get him oxygen, they called one of the surgeons who came in and tried different positions to see if that would help him breath easier. They concluded that maybe he would be happier if I held him, so I held him upright while the doctor crouched down and held an oxygen tube up to his mouth and nose to help him get air. We sat like that for at least 45 minutes while we waited on a 'nasal trumpet'(a long tube that is inserted into a nostril to open up the airway) and to see if he would stabilize. He was hooked up to a monitor that kept indicating his blood oxygen level was repeatedly dropping. While they were fetching the trumpet, the doctor calmly told me that he would not be able to stay on a regular floor with the trumpet as it was considered an 'unstable airway'. I thought I was done having to hand my baby over to the nursery but I took it ok at the time and resigned to the fact that it was the best thing to do.
Once the trumpet was inserted he did ok for a little while and then started crying in pain and started gasping for air again. The nurses were coming in to prepare to move him to the NICU and they informed me that we would not be able to stay at the hospital with him. I lost it then and had to give him to the doctor because it pained me so much to see him like that, and when I cried it seemed like Judah cried more. When they put him in the bed he started destabilizing again and his alarm kept beeping. Everyone seemed to be in a panic and it eventually got to me so bad that I had to leave the room. I went for a walk and cried and cried and cried.
When I went back up everyone was gone and my dad was waiting for me. I sat down next to him and he hugged me and I cried for a long time. He ended up taking me back to the hotel we had stayed at the night before to see about getting us a room and to give me some space from everything. I hated to leave Judah but hated seeing him like that more.
All of that took about an hour and a half and when I returned to the hospital I went in the nursery to see him.

He looked awful and kept waking from sleep with a start and crying because he was hurting so bad. They gave him a dose of steroids to see if that would decrease the swelling and help him breathe easier. I didn't stay long because it was too hard... I wish I could explain this to make it easier to understand, but he looked different, acted different and didn't 'recognize' us at all. I know he was very out of it but I couldn't stand it. I wanted my old baby back.
In a way it was a blessing that he stayed in the NICU because it allowed Micah and I to get a really good night's rest. We were so exhausted, mentally and physically, from the day's events.

When we returned to the hospital the next morning Judah was sleeping in his bed and they had removed the trumpet. Micah and I called his name and when he awoke we instantly saw the look of recognition in his eyes. It felt so good when he tried to smile at me and you could just tell he was happy to see us. We felt a lot better too because his swelling had gone down a lot and he looked much more like himself. The doctor came by and spoke with me and said he had done very well during the night and would be moved to a regular room as soon as one opened up. He took a bottle then and continually ate well after that.
To put all of this in perspective, a girl I have been talking to had her son's repair Monday morning at the same place, by the same doctor. They were able to see him in recovery (which lets me know that we weren't able to see Judah because of the state he was in) and was eating from his bottle 15 minutes after they got into their hospital room. She said he was only 'out of it' for about two hours after that. They are already on their way home and it is only 1 PM on Tuesday. The doctor said what happened with Judah may be as high as a 1 in 300 complication.
I am so happy with the way his repair turned out. I am so glad we didn't go with the Latham because I can't imagine it looking better than it does and we would have gone through all of that for nothing. I am getting used to the 'new' Judah and I fall in love with his little face more every time that I look at it. He looks so perfect and I really couldn't ask for more.
Judah has gotten better and better with every passing day. He is getting back to his 'normal' self and is still pretty mellow but in good spirits.

I'm sitting here looking at Judah now and it still feels so surreal that a change of this magnitude is even possible. I feel like this whole story has so many elements of a fairytale; love, struggle, danger, resilience, a touch of the unbelievable, and ultimately, a happy ending. Even though this is but one chapter in our journey, I am happy that we are on the road to recovery and to be writing this as history.

10 days

It is starting to hit me that Judah's surgery is so soon...tomorrow will be worse because we will be in single digits and Friday worse still because that will mark a week.
I wish I could fully explain the gamut of emotions I am experiencing. I am excited that something is finally happening, but at the same time I am terrified of what it IS that is happening. I've heard a lot of cleft moms say how much they missed their child's cleft after surgery...before I thought 'no way will I ever miss it'! But I so will...I wonder a lot about how he will look afterwards, I'm sure it will be fine but it is hard to think about because I love the way he looks now...as I said before, I understand that surgery is completely necessary, but in this weird way I feel like he won't be the baby I gave birth to, he will be altered, and that makes me so sad. I hope one day he can read all of this and know that I always thought he was made beautifully perfect.
I am getting really on edge about the actual surgery, but I am trying not to dwell on it a lot. I'm sure the risk of complication is relatively low, but I am still so scared of him going under anesthesia...hopefully it will be easier next time since he will have been through it already. I am worried that I will be nit-picky about the repair and that it will look 'worse'. I can hardly imagine him looking 'better' than he does now.
I hope Micah handles everything ok, he had a very hard time when Judah was in the NICU because it made him feel like Judah was sick. We are a very good match because where I am weak, he is strong and vice versa. He is not good about expressing his feelings, so I hope that we will be able to stay communicative and united together so we can get through this and rely on each other for the strength the other lacks.
I am also thinking a lot about the recovery, I have been told that they bounce back relatively quickly, but I think it will be like having a newborn all over again, but worse. I am hoping he will still like his Haberman bottle and that we won't have to try a million different ones to get him to eat. I don't like that he will have to wear arm restraints for weeks after surgery. What I hope for the most is that he will be in the least pain possible and that the transition will be as smooth as it can be, for Judah, Micah and myself.
I know a lot of this is probably hard for some of you to understand, but it makes me feel better by trying to work everything out in writing. I have so many conflicting emotions about everything, it's hard for even me to understand. I really am pretty positive about the whole situation, despite everything, it is just an experience that is really hard to process.

Ch-ch-ch-ch-changes

Due to insurance coverage issues we are switching to Children's in Birmingham. It is 3 hours away, instead of 1 1/2 but that will be ok. The doctor there does not use the Latham appliance, which at first I thought would make his repair not be as good, but apparently that is not the case. One of the ladies I talked to said her doctor compared having an appliance to making surgery a home run, and without an appliance he just has to do more work during surgery to finish it out. The end results would be the same either way, and the doctor in Birmingham thinks the Latham is unnecessary risk, unnecessary trauma and unnecessary anesthesia...So I am actually REALLY ok with that. I was not looking forward to the whole experience, and it makes sense to me that you would rather do everything at one time in surgery, while they are asleep, instead of making them endure all that pain for weeks before surgery. The doctor said he has never had a cleft so wide that he couldn't fix it in a one stage repair, and Micah said it seems to him that he must be really good at what he does if he does not need an appliance to rely on as a crutch. They also have the exact comprehensive team that Atlanta does, so we aren't losing anything in that regard either.
Anyway, I am leaving this afternoon to travel to Birmingham and stay overnight since our appointment tomorrow is at 8AM. It will basically be just like the one in ATL where we will meet with all the doctors because they have to make their own evaluation of Judah. They told me yesterday that we are looking at the end of February for surgery, maybe earlier if they have a cancellation...Kind of sad that we have been waiting and waiting to hear from Atlanta with no clue as to when surgery would be, and in one phone call to Birmingham they were able to give me a time frame. So, basically I will just treat the appointment tomorrow like a 'second opinion' and I'm sure it will be relatively easy since we have been through this before and know what to expect...just very, very long, it took 6 hours the last time! I will update tomorrow and let everyone know how it goes. All in all, I guess I am just sticking to 'everything happens for a reason', and I think this will turn out to be a very good change.

Making an impression

Today we went up to Atlanta to make Judah's impression for the Latham device...it wasn't too bad but was hard because I had to hold him down while they put the tray with putty in his mouth. It seemed like it took forever, and he cried a lot but I am thankful he didn't struggle because that would have hurt me a lot more. The doctor said it will take about 2-3 weeks for the lab to make the device...and in the meantime the schedule coordinator will be working out when the surgeon and OR and all the other things will coincide for his lip surgery. Once they get that date set they will back up four weeks and that is when they will do surgery to put the Latham in place. They said he will have to stay in the hospital overnight after that surgery for observation since they will be putting him to sleep...I've also heard from other Latham mom's that they have feeding difficulties afterwards and often have to change bottles so I'm glad we'll have resources to help us immediately afterwards. Once the Latham is put in we will have to go up to Atlanta every week to have them check the progress. We also still have to see the ENT doctors for his tubes and see their hospital pediatrician for them to do a pre-op physical.

I am having a hard time mainly because everything is still up in the air. It's almost like before he was born and we didn't know anything, but now we just don't know when anything will happen. I am stressing out about whether to go back to work because I don't know how we'll make ends meet otherwise...but then again there aren't any viable childcare options other than shuffling him to Ft. Mitchell to stay with my mom...but that would involve me driving there, then to Columbus for work, then back there to get him and then home. Micah is trying so hard to get a better job and hasn't heard anything from anyone. I just feel like time is running out and I can't seem to find a way to make things work out the way I need them to. As stressful as all this is I can't imagine being able to function at work...I can barely function in my daily life. Today was just very trying in a lot of ways...I hate being at doctor's offices and I dread all the upcoming time we will have to spend in them. I hate that my sweet baby has to have all this done and wish we could just worry about normal things like how many poopy diapers he has, rather than how many surgeries he has to have. I know it isn't productive to think about things these ways, but some days you just can't help it. I guess I'm having a "why us?" kind of day.

Pictures!

Here we go...

First off, I apologize for not posting for so long...Nothing new happened in the last few weeks before he was born and now that he is here I hardly have time to think about anything, much less write blog posts. But luckily, Judah is sitting in his bouncer quietly staring at me...he must know I am writing to let everyone that loves him know what went on today. =]

Our first appointment this morning was with genetics...She got some family history and asked us some questions and then poked and prodded Judah for a while, looking for signs of varying syndromes that are associated with clefts. Many times, a cleft is part of a larger syndrome, but thankfully Judah has nothing else going on. I think I held my breath the entire time she was checking him out, and when she said everything looks perfect it was such a relief! She told us since there is no history of clefts on either side of our family and since there is no other syndrome involved that if we had another child the chances if it having a cleft would be about 4%. To put that in perspective every woman has a 2-3% chance of a birth defect, so it's not that high.

 Next, we saw nutrition and feeding...they asked a lot of questions about how much and how often he is eating and watched him feed to make sure everything looks good. I could have told him he has NO problems with that!!

While we were talking with a social worker, the plastic surgeon came in. He asked me to lay Judah on the table and by the time I sat down he was already handing him back to me. He was in and out so fast I didn't even have time to form a question. He told us that Judah will be fitted for what is called a Latham Pin device...it is basically an appliance that he will have a surgery to put in and we will have to turn a tiny screw on it every day to pull everything closer together for his lip repair. Once they are satisfied with the results they will schedule his lip repair and they will repair his nose, lip and gumline all at one time. He will also have tubes put in his ears, as babies with clefts are more likely to have ear infections, and they can cause hearing loss. We go on December 14th to make an impression for the device, but I don't know how long after that he will have surgery to put it in. I'm sure they'll give us more details then.

We also had a hearing test done because he failed his newborn screen... he passed his right ear on a second test, and failed the left. Today he failed both ears again because there is fluid in them. The test sends a vibration to the ear drum and measures it as it comes back, but because of the fluid the vibrations get lost in there and the machine receives no signal. Once his tubes are put in they will do another test. It makes me a little nervous just hearing that he is 'failing' hearing tests, but I know he can hear. He responds to us and startles at loud noises...if you walk up behind him and speak he will turn to see you. The technician doing the test likened it to how you can hear when you stick your fingers in your ears...you can still hear but things are muffled. I was a little upset in the office because it is just hard to hear things like that and you can't help but worry, but she told me not to as long as we feel he is responding well.

I am sitting here crying, thinking about his upcoming surgeries. It's so strange because I have been totally ok with everything about his cleft since he was born...he is so beautiful just the way he is. Now that we have spoken to the doctors and things are starting to happen I am so scared. My heart hurts so much thinking about everything he is going to go through. I know it is all for the best but thinking of my poor baby being put to sleep and cut up kills me.  I also have this weird fear that I won't like the way his surgery turns out...like I am so in love with the way he looks now (and no, I'm not saying I 'don't want surgery', of course I know it is wonderful and necessary...and yes, I know he is in great hands). It's just a weird feeling I can't quite put into words.

Overall, today was a good day. We were there for almost six hours but we were in one room the whole time and everybody came in to see us one at a time. All the people we spoke to were so nice, caring and welcoming and that made everything so much easier. We will update you guys after our appointment in a couple of weeks!

Facing reality

Today started off ok and ended a little hard. We went to the fetal medicine specialists this morning for another ultrasound to check on Judah's growth and see how he is progressing. He weighs approximately 2 pounds 4 ounces...but he is measuring about 2 weeks ahead of 'schedule' and apparently that is worrisome. I go for my glucose screening to check for gestational diabetes on the 4th of August and if that comes out abnormal then that could be the cause. Micah and a lot of babies born in his family have been big so they said maybe it just runs in the family...but it seems they are trying to find a more concrete thing to pin it on.
They got some pictures in 3D of his cleft for the first time today. When I saw it I didn't really have a reaction...I actually was kind of ok, but as the day went on I found myself getting a little down about it. I guess part of me held out hope that it was misdiagnosed and it would turn out that nothing was wrong at all. The reality of it really started to hit hard...Overall, I guess the appointment was nice and disappointing all at the same time. I attached the pictures to the end of the post...His umbilical cord was next to the right side of his face so it looks a little distorted over there and they said it made the quality of the images a little fuzzy...but you can make out the cleft in his lip on the left side. They still say it is unilateral but the doctor today said it does appear to be complete, meaning it goes all the way into the nose. They still don't know if he has cleft palate as well, and probably won't be able to tell until he is born.
Some good news is that he is turned head down so they said we probably won't have to worry about him being a breech baby!

Things are looking up

Today was a really good day! I told about 5 people at work about Judah and didn't cry. Normally, I can get out "He has..." before I choke, so hopefully this is a sign that I am coming around. At first I didn't think I would tell many people other than family and close friends, but I am starting to feel like I want to share. Looking back, I guess I felt ashamed in some way...and yes, I realize it is not my fault and I do not blame myself or Micah for any of this, but it felt like my pregnancy or Judah was devalued in some way. I was very worried about what other people would think about him but now I just feel like if you don't like it, then don't look. I didn't think I would want to take pictures of him and now I am kind of excited to plaster them all over the internet when he is born. I guess I realize now that he is worth just as much as any other child, if not more. I think it has helped to tell more people and hear how positive their reactions have been. I am still a little worried about the upcoming tests we have, I just want everything else to come back ok. I am going to just assume he has cleft palate as well, so then if he doesn't I will be pleasantly surprised, but I feel it is poisonous to 'hope' that he doesn't. I'd rather prepare myself now!

Also, I called the counselor at the Maternal Fetal Medicine Specialists. Our appointment for the echo cardiogram is next Wednesday, the 29th. Hopefully we will have all good news there...She said she has been playing phone tag with the cleft specialists in Atlanta. Hopefully they will set up something for us soon because I am anxious.

Hopefully this isn't a fluke and I will have lots more days like this one! =]

A different path

I am starting this blog at the insistence of my Aunt Debbie and my mother...I had intended to start a blog for Judah, but never got it off the ground. Now I have a different reason compelling me to write. Originally, when they told me I should 'write it out' I thought it would be a terrible idea for me to journal what I was feeling about Judah and his 'complications', but as the shock has worn off and the grief has turned to acceptance I have realized what good can come from venting and sharing and the feedback and love we can receive from that. And so begins our story...

We found out on June 10th during our 20-week anatomy scan that it appeared Judah has a cleft lip. I am thankful that I am married to Micah because he took the news as a minor roadblock, just one of those things that we will deal with and everything will be fine. I did not handle the news as well. I guess I went through a little period of mourning, grieving the loss of the vision I had for this pregnancy and his birth. I saw things playing out a certain way and it just won't be that way anymore. I will probably never be able to breastfeed him naturally. He will need multiple surgeries and care throughout his life to repair and correct everything. It just all seemed really overwhelming.

We had an appointment with a fetal medicine specialist on June 15th. After a very long ultrasound they concluded that he does indeed have a unilateral cleft, so luckily it is only on one side. It may be possible to have a 3-D ultrasound to see if he has cleft palate as well, but most likely we will have to wait until he is born. The ultrasound will only really show anything if Judah cooperates, and given his behavior and penchant for putting his hands over his face it will not pan out. =] A cleft sometimes throws up flags that there may be other abnormalities or problems, so although everything seems to be fine it is 'standard procedure' to check out his heart, since that is the next most likely problem that occurs with a cleft. All his ultrasounds show that his heart looks fine but we have an appointment soon for a fetal echo cardiogram to take a closer look. We also have an appointment with some cleft specialists in Atlanta to discuss the logistics of when surgery can be performed, what we can expect, etc.

I felt a lot better after seeing the specialists because they did a 3-D ultrasound on him so we really got to see his face. Although you cannot see the cleft on the ultrasound, you can see the rest of his face and he is adorable. I read today somewhere that the child will get a lot of his feelings about his cleft from the parents...that their view and outlook on it will kind of set the tone for the way he sees things, and that really made me think. Yes, it was very upsetting news, Yes, it will be really hard and things will be a lot different now, but he is still our baby. He already has so much personality and we love him so much already. I just hope that everyone can look past his physical anomaly and see the baby we see. We are already halfway through this pregnancy and we have just been taken down a different path, but that's ok. It will still be really hard sometimes, but I feel like I have come to terms with it a little better now and would be able to share. I hope you guys will follow my blog and come on this journey with us.