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.

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.

Hopes for the new year

This year has brought two very awesome things to us...Micah and I finally got married and we had our sweet baby Judah. It's weird how fast this year went by, I spent the better part of it pregnant and though that seems to have dragged on forever, it is such a distant memory now that Judah is here.
2012 will bring a lot of challenges our way. Judah will have his first of many surgeries and I am starting to dread the first one so much. We are still awaiting a call from Atlanta with the date. Things will be rough for a while but I am so thankful that we have so many family members and friends (and some people we don't even know) that are rallying around us and praying for us and Judah. I hope that Judah is strong and handles everything well....even more, I hope that WE are able to handle it. I hope that he heals and recovers quickly and that there are no complications. I hope that our family is happy and healthy and will continue to be for a very long time.
It's funny, I've read a lot of facebook posts tonight that say "Aw, I wish I was going out" etc. but I can't tell you how happy I am to be staying at home (with a couple glasses of wine, of course ;] ) with my two boys.. I love them more than anything in this world.

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.