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.
Showing posts with label CHOA. Show all posts
Showing posts with label CHOA. Show all posts
Wednesday, December 14, 2011
Wednesday, November 30, 2011
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!
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!
Subscribe to:
Posts (Atom)