And I can guarantee I'll want to be sedated!!! Tomorrow at 12:30, my C-Section will begin and Gabriel will join us in the outside world!!! Now, I realize I shouldn't be terrified of this, but it seems I am. Chad reminds me that this is not my first C-Section, so I shouldn't be scared, but last time was not like this.
Five years ago, I went to the doctor for an appointment one week after my due date with Ethan. He told me that day I would be heading to the hospital that evening to be induced - ok, no time to get nervous. Then, after twenty-three very long hours of constant contractions, the doctor said he was too big to come out the normal way and we would be doing a C-Section. Within fifteen minutes of that decision, I was on the table in the OR - ok, again, no time to get nervous. This time I have known I would have a C-Section since my first appointment at eleven weeks pregnant - hence, lots of time to get nervous!!
My C-Section with Ethan was not a pleasant experience. First of all, the anesthesiologist announced when he came into the room that it was his first day on the job! Who admits that?!?!?! Secondly, I apparently didn't take to the epidural well, because even my doctor admitted the next day that I felt more than I was supposed to. It's funny how people always say you forget the pain after you see your beautiful baby. This is a lie. You never forget the pain; you just decide that it is worth going through again. So that is what I am focusing on. This time I am having a spinal block - which I am afraid of - but if it works better than my epidural, I really can't complain.
In addition to just the normal surgery nerves, I am - of course - nervous about finally finding out all those unknowns about our Gabriel. Is everything else really ok? How badly is the palate impacted? How does he really look? Were the ultrasounds right? Will he be able to eat? Will he be put in the NICU? Will he get to come home with me? Can I really do this? Have I mustered enough strength yet? What will Ethan think? What will Ethan say? What will everyone else say? Sheesh, no wonder I can't sleep anymore.
Truth is - he is going to be my beautiful baby - no matter what. And I honestly don't care what anyone else says - although heed my warning: everyone gets one negative comment free. Anymore than that, and I will kick you out of our room and disallow you seeing my son. Even more true is the fact that - just like when I had E - the second I hear him cry, I will know that everything is going to be ok. I can't wait to share the story with all of you - and pictures too!!!
Wish us luck!!!!
Wednesday, November 30, 2011
Thursday, November 24, 2011
If Only You Believe in Miracles, Baby, So Would I
I have never been a big believer in miracles. Having never actually witnessed one, I have certainly questioned the reality of their existence. It’s not like we live in biblical times where everyone was walking around getting cured or brought back to life. I guess I might be a lot like the kangaroo on Horton Hears a Who – if you can’t see, hear, or feel something – it doesn’t exist. Well, this week may have changed all that. Stay with me here. We are going a little off topic, but this is all a crucial part of our journey.
Someone extremely close to me was diagnosed in February of this year with Stage 4 Colorectal Cancer that had metastasized (or spread) to their liver. They were deemed incurable and given 2-3 years to live. It’s important to know that this person (who has asked to remain nameless on the internet) should have another 30 years left if you base life expectancy on that of your family, so 2-3 years was really cutting things short. While extremely devastated, this person was not defeated and set out for a second opinion.
The second opinion was surprisingly different. They were told that while it was a long shot, there was a possible chance of a cure through some aggressive chemotherapy and extremely difficult surgeries. So they would set off on their journey into curable through their first round of chemo. After a few months of chemo it was time to check the progress. Devastation set in again when they were told that the cancer appeared to have spread and they were no longer a surgical candidate, thus making them – once again – incurable. They had switched from ‘curing’ mode to ‘prolonging life’ mode. They knew what this meant. Back to 2-3 years…
Well, the doctors decided to try one more thing along with their ‘prolonging life’ chemo. They did some genetic testing on the tumors and cancer to find a drug that was supposed to be the most effective with this person’s type of cancer. They were checked again and to everyone’s surprise, this chemo was shrinking the tumors to the point where surgery was actually back on the table!! Again, they were reminded that it was a long shot, but definitely a possibility.
So, the first surgery was on. They had what is called an embolism done to their liver to start with. The purpose of the embolism was to shut off the blood supply to the bad side of the liver and redirect it to the good side to try and enhance its growth. While they waited to see if the embolism worked, they underwent radiation to try and tackle the colon tumor. Much to everyone’s surprise, the embolism did work – increasing liver function by 5-10%, which was all that was needed to remove the tumors from the liver.
In the beginning of November, this person had an all day surgery to remove the entire right lobe of their liver and a smaller tumor from the left lobe. All in all, about 60% of their liver was removed. A couple of days following this very dangerous surgery, they were given the news that all cancer had been successfully removed from their liver!
A couple of days ago, they went in for their post-op appointment. It was at that time their surgeon indicated that he could no longer locate (through ordinary measures) the tumor in the colon. It doesn’t mean it’s not there – it just means that it has likely gone from obstructing to nearly obsolete. They won’t know how much is truly left until they do another exam in a couple weeks, but they have already scheduled the surgery to remove what is left about a week after Gabriel is to arrive. Once that surgery has been a proven success, this person will officially be cured!!!
Long story short, I believe there is a distinct possibility I have witnessed my first miracle. It is truly as if the hand of God has reached down from the heavens to touch this person and make them whole again. While I am still cautiously optimistic (because of the way things have gone in the past year), I find my faith to be stronger and believe that the possibility of miracles truly does exist. Perhaps my Gabriel will be spared some of the rotten things that go along with having cleft. Perhaps he won’t need surgeries past the first year. Or perhaps, despite all of this, he will be the happiest, healthiest kid I know. Perhaps we will get our own little miracle for him. At least now I believe it’s possible.
Tuesday, November 15, 2011
Oh, boy.
So, yesterday we had our second appointment with Gabriel's plastic surgeon. Chad was unable to attend, so my sister graciously went along. All I knew was that I couldn't go by myself. My mom and I are much the same in that the first thing we hear that is negative - we stop listening altogether. My sister has always been one of those people who can stifle any emotion to get through the conversation. An admirable trait really. At any rate, not likely what you came here to read about!
When we had our first ultrasound around 20 weeks and found out about the clefts, we went to visit the plastic surgeon. At that time, he indicated that because we had no way to truly know the severity of the clefts, he would outline everything for a worst-case scenario and we would continue to pray for the best. I knew things were bad on Monday when he outlined the exact same scenario as before - we truly are facing the worst-case scenario where Gabriel's clefts are concerned.
He first confirmed that the clefts are complete and the premaxilla is protruding - this I already knew. Then we talked about the palate - which again, we are only speculating how severe it is - and based on his experience, he expects that the palate is open in both the hard and soft palate, on both sides of the mouth (which has been confirmed) and that the uvula (the little dangling thing in the back of your throat) is also likely split in half.
The plan of attack at this point is still to implant the Latham Device at 3 weeks old - which he said the screw has to be turned by us once a day!!!! I thought it was once a week - see, proof I stopped listening the first time. Between 3 and 5 months old, he will close the gaps in the gums and do a preliminary lip reconstruction. This will not close the gaps in the lips entirely, but will make the full-blown reconstruction easier. Said full-blown reconstruction will occur between 9 and 12 months of age. I know what you are thinking - you have already heard all of this. How could this be worst-case scenario if all work is done by 1 year old? Well, that's where the worst in worst-case scenario comes in.
Our surgeon indicated that we should be prepared for Gabriel to have surgeries all the way into his late teen years. With bilateral babies, there is extra work that always has to be done due to the palate being open in two places. There will be major orthodontic work that has to happen. When the premaxilla is protruding (as Gabriel's is), the lower jaw is going to grow at a faster rate than the upper jaw. So, at some point when his mouth has stopped growing, the lower jaw will be reset to correct this. Gabriel will also likely have to have a nose job at 17 or 18 years of age. A nose job!!!! I was talking to Chad afterwards about how much this upset me because that means he will not have a perfect nose through the hard parts of school and that everyone will know when he has had a nose job. It's not like we live in LA and give our kids a new nose for their sweet 16!!!!! Sigh.
Needless to say, I have felt slightly defeated since yesterday. I don't know what I was expecting to hear. Chad wasn't at all surprised. Perhaps it is the eternal optimist in me. For those of you who know me well, stop laughing...
Funny thing about all this is, my dad went to my niece's school function on Friday and met the father of a 5th grader who had the remnants of a cleft lip. His dad said he just recently had his 11th surgery!!!! I told my dad I didn't want to hear anymore. I am truly not trying to feel sorry about all this. I am working hard to find my strength. But as time draws near, I find my fears are killing off every other emotion I have. I guess it's a good thing I have 2 weeks and a day to get my shit together (as my mom often tells me to do) and remember that I am strong enough to get my son through this.
When we had our first ultrasound around 20 weeks and found out about the clefts, we went to visit the plastic surgeon. At that time, he indicated that because we had no way to truly know the severity of the clefts, he would outline everything for a worst-case scenario and we would continue to pray for the best. I knew things were bad on Monday when he outlined the exact same scenario as before - we truly are facing the worst-case scenario where Gabriel's clefts are concerned.
He first confirmed that the clefts are complete and the premaxilla is protruding - this I already knew. Then we talked about the palate - which again, we are only speculating how severe it is - and based on his experience, he expects that the palate is open in both the hard and soft palate, on both sides of the mouth (which has been confirmed) and that the uvula (the little dangling thing in the back of your throat) is also likely split in half.
The plan of attack at this point is still to implant the Latham Device at 3 weeks old - which he said the screw has to be turned by us once a day!!!! I thought it was once a week - see, proof I stopped listening the first time. Between 3 and 5 months old, he will close the gaps in the gums and do a preliminary lip reconstruction. This will not close the gaps in the lips entirely, but will make the full-blown reconstruction easier. Said full-blown reconstruction will occur between 9 and 12 months of age. I know what you are thinking - you have already heard all of this. How could this be worst-case scenario if all work is done by 1 year old? Well, that's where the worst in worst-case scenario comes in.
Our surgeon indicated that we should be prepared for Gabriel to have surgeries all the way into his late teen years. With bilateral babies, there is extra work that always has to be done due to the palate being open in two places. There will be major orthodontic work that has to happen. When the premaxilla is protruding (as Gabriel's is), the lower jaw is going to grow at a faster rate than the upper jaw. So, at some point when his mouth has stopped growing, the lower jaw will be reset to correct this. Gabriel will also likely have to have a nose job at 17 or 18 years of age. A nose job!!!! I was talking to Chad afterwards about how much this upset me because that means he will not have a perfect nose through the hard parts of school and that everyone will know when he has had a nose job. It's not like we live in LA and give our kids a new nose for their sweet 16!!!!! Sigh.
Needless to say, I have felt slightly defeated since yesterday. I don't know what I was expecting to hear. Chad wasn't at all surprised. Perhaps it is the eternal optimist in me. For those of you who know me well, stop laughing...
Funny thing about all this is, my dad went to my niece's school function on Friday and met the father of a 5th grader who had the remnants of a cleft lip. His dad said he just recently had his 11th surgery!!!! I told my dad I didn't want to hear anymore. I am truly not trying to feel sorry about all this. I am working hard to find my strength. But as time draws near, I find my fears are killing off every other emotion I have. I guess it's a good thing I have 2 weeks and a day to get my shit together (as my mom often tells me to do) and remember that I am strong enough to get my son through this.
Thursday, November 3, 2011
Coming Soon to a Nursery Near You!
Well, it's official. My C-Section is scheduled to begin at 12:30 pm on Thursday, December 1st. Finally, I will get to meet my little Gabriel!! I could not be more excited - or terrified. All of a sudden it seems so near. I am starting to question just how ready I am. First of all, we haven't put the portable crib together in our bedroom and I have things yet to buy. Secondly, I have all sorts of questions that run through my head on a daily basis. Mostly what ifs, but some actually legitimate. Thankfully we got a call from the plastic surgeon today who wants to meet with us one more time before Gabriel arrives. That should take care of some of my outstanding questions. I will elaborate more on that after our appointment on the 14th.
So, I was reading a post the other day from a 38 year old gentleman who wanted to share with mothers of children with cleft, his first person story of living with cleft lip/palate. He mentioned trials and tribulations. He noted that he had several surgeries up until he had his last at 18 years old. That surgery was to reset his jaw and then have it wired shut for a week. While I found his story very interesting, there was one thing he said that I just haven't been able to get out of my mind. He said - your child doesn't blame you, so please don't blame yourself. I found this amazingly powerful statement to be so captivating, and since I promised myself to share the whole truth with all of you out there, I will tell you why.
The day we first found out about Gabriel's clefts, I spent so much time trying to figure out what I had done wrong. I won't lie. I smoked a few cigarettes before I knew I was pregnant. I also took a medication that 3 doctors said I could take, but I was unsure. I ate cold deli meat before I knew I was pregnant. I haven't been a perfect person, so I was sure my karma levels were to blame. The list goes on and on. Then we found out that one of Chad's cousins was born with a cleft lip (no palate involvement). So great - perhaps it was genetic and I could blame his bloodline - but I didn't. I silently blamed God and went on strike from praying for a time. Then I realized I might actually need Him and it was unlikely He would help me out if I were harboring resentment. But there must be someone to blame, isn't there?
It dawned on me recently that for every rotten thing that has ever happened to me, I have spent a great deal of energy trying to figure out whom I could blame. Funny thing is, I have a mantra I live by - it is what it is - but honestly, I am quite sure there is someone to blame for it being what it is! Chad reminds me that there is no one to blame and that we just need to focus on being as strong as we can for our Gabriel, but sadly, I am not convinced.
So that brings me back to whom to blame. Nearly every night since finding out about what our baby will endure, there is a little voice in my head who wakes me up at 2 am asking, 'what did you do to him?', 'how could you subject him to such torture?', 'how do you fix it now?'. The truth is - I don't know. My children are my life. When they are away from me, it's often hard to breathe. I swear my heart skips beats because a part of my heart is always with them. So of course I didn't DO this to him. How could I? What kind of mother would I be?
Logically I know that I likely didn't do this to him. That makes sense. There are so many reasons (mostly unknown) as to why cleft lip and palate occur - I have stated this before. But part of me knows that when my baby is going through surgeries, possibly until he is 18 years old, that I will not be satisfied until I sufficiently find someone to blame. And honestly, if he doesn't blame me, then he is truly a better person than I.
So, there you have it. I have learned a tremendous amount on this journey so far and I have no doubt that I will be a pillar of strength for my little one. But I do have my demons to deal with - I wonder who I can blame for that...
So, I was reading a post the other day from a 38 year old gentleman who wanted to share with mothers of children with cleft, his first person story of living with cleft lip/palate. He mentioned trials and tribulations. He noted that he had several surgeries up until he had his last at 18 years old. That surgery was to reset his jaw and then have it wired shut for a week. While I found his story very interesting, there was one thing he said that I just haven't been able to get out of my mind. He said - your child doesn't blame you, so please don't blame yourself. I found this amazingly powerful statement to be so captivating, and since I promised myself to share the whole truth with all of you out there, I will tell you why.
The day we first found out about Gabriel's clefts, I spent so much time trying to figure out what I had done wrong. I won't lie. I smoked a few cigarettes before I knew I was pregnant. I also took a medication that 3 doctors said I could take, but I was unsure. I ate cold deli meat before I knew I was pregnant. I haven't been a perfect person, so I was sure my karma levels were to blame. The list goes on and on. Then we found out that one of Chad's cousins was born with a cleft lip (no palate involvement). So great - perhaps it was genetic and I could blame his bloodline - but I didn't. I silently blamed God and went on strike from praying for a time. Then I realized I might actually need Him and it was unlikely He would help me out if I were harboring resentment. But there must be someone to blame, isn't there?
It dawned on me recently that for every rotten thing that has ever happened to me, I have spent a great deal of energy trying to figure out whom I could blame. Funny thing is, I have a mantra I live by - it is what it is - but honestly, I am quite sure there is someone to blame for it being what it is! Chad reminds me that there is no one to blame and that we just need to focus on being as strong as we can for our Gabriel, but sadly, I am not convinced.
So that brings me back to whom to blame. Nearly every night since finding out about what our baby will endure, there is a little voice in my head who wakes me up at 2 am asking, 'what did you do to him?', 'how could you subject him to such torture?', 'how do you fix it now?'. The truth is - I don't know. My children are my life. When they are away from me, it's often hard to breathe. I swear my heart skips beats because a part of my heart is always with them. So of course I didn't DO this to him. How could I? What kind of mother would I be?
Logically I know that I likely didn't do this to him. That makes sense. There are so many reasons (mostly unknown) as to why cleft lip and palate occur - I have stated this before. But part of me knows that when my baby is going through surgeries, possibly until he is 18 years old, that I will not be satisfied until I sufficiently find someone to blame. And honestly, if he doesn't blame me, then he is truly a better person than I.
So, there you have it. I have learned a tremendous amount on this journey so far and I have no doubt that I will be a pillar of strength for my little one. But I do have my demons to deal with - I wonder who I can blame for that...
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