No time wasted

Much to my surprise, we have a date...even more surprising, it is SOON. Judah will have his lip repair on January 27th. I am as excited as I can be considering the circumstances, but a little freaked out because this got real, really quickly.
Our day at Birmingham went really well. I was very impressed by everything about the hospital and the cleft team. We saw audiology first, and I gave them Judah's history. They will put in tubes during his lip repair and he will have another hearing test after his surgery. We saw the feeding specialist next and let her know he is doing fine.
Then Dr. Grant, who will be performing the surgery, came in and I LOVED him. If you remember, the surgeon in Atlanta came in for less than 3 minutes and explained nothing. Dr. Grant spent a long time explaining everything about the lip repair and all the other procedures we can expect in the future. We have to be at the hospital at 5:45 AM for his surgery and he will be the first one of the day. The surgery should take 2 1/2 to 3 hours. They will take him back to the OR awake and give him gas to put him to sleep before they administer the anesthetic, that way Judah will never know where it came from. A nurse will call us about halfway through and let us know how he is doing. After the surgery they will remove the breathing tube and Dr. Grant will stay with him until he is stable. Then he will come and get Micah and I so we can see him. We will stay overnight and then go home the next day.
We talked about the Latham and he said that he was totally against it and thinks it does more harm than good, beyond the fact that if he was going to get it he should have already. He said the Latham restricts the upper jaw from growing properly and the lower jaw would continue at a normal rate, giving you a 'bulldog' appearance, which he said is 'good for dogs, but not so good when you're a kid'. Again, I told him I am SO OK with not doing that. I was dreading it and am so thankful we do not have to put Judah through that!
His palate will be repaired at 10 months. Once his lip repair is done, it will begin to shift his gumline and will continue to do so until he is 8 years old, when he will have a bone graft to fuse the two parts together. He may have revisions of his lip and nose, based on need. Once his baby teeth start falling out we will see an orthodontist team who will determine whether he has substantial bone for adult teeth to attach to. If he doesn't he will have other bone grafts, and they will form a plan to get his teeth where they need to be.
We also saw another genetics team. They really scared me because after physically checking him out they said they will do a blood test to scan for a variety of genetic disorders. I asked if he saw something that was a 'red flag' because Atlanta didn't ever mention further genetic testing. He said he didn't, and that if he had he would tell me. He said it is just a precautionary measure to cover our bases and make absolutely sure that the cleft is isolated. It will take about 2-3 months for the results to come back, and I am trying not to worry about it. He said that Judah looked perfect and he was almost positive the test would come back negative, and that if I spend time worrying I'd be doing it for nothing.
We got all of his pre-op stuff done today, met with anesthesia to fill out that paperwork, and the ENT will see him the day of surgery for the tubes...so no running back and forth like we would have in Atlanta. I am so impressed because after 2 months of messing around with Atlanta we had no definitive answers and no timeline for surgery. Within two DAYS with Birmingham we have everything in order and are ready to go! I am so thankful that we are going to have his surgery there and that everything fell into place when it did. They normally do the lip repair at 3 months, and he will be 3 months and 3 days when he has his surgery...So even though it seems we spent a lot of time with Atlanta, we actually didn't lose anything at all, and gained a lot more.
So, in just 15 days my sweet boy will have his first surgery. I plan on spending those days living in a bubble because if he gets sick then we would have to cancel his surgery and wait 4-6 weeks before we could schedule another one. I am also going to be taking sooooo many videos and pictures so I can always remember his precious wide smile. Most people only get one first smile, and we are lucky enough to have two to fall in love with.

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.

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!