OY!
You know for once I would like an appointment to just be completely full of good news! I don't really think that is all that much to ask but that could just be me. I went to the doctor for an anatomy ultrasound today or to try to complete it since it wasn't possible at Hopkins.
What a can of worms.
I have to say that the doctor at this place was phenomenal. He was thorough and compassionate and brutally honest. He spoke with Dr. Kelley while I was getting the ultrasound done and had a pretty good idea of my story by the time he was off of the phone with Kelley. That didn't really make any of the news better as I had hoped.
Apparently, Kelley still believes that a C-Section is the best bet for me. I am very okay with this. It is because of my underlying muscle weakness that is driving him away from regular delivery or assisted delivery. Kelley and this doctor, Dr. Kraus, both believe that my uterus will not contract for labor which will cause problems. Like my uterus tearing. You must understand that not only did not expect to have children for another two or three years, I wasn't even thinking about preparing to have children anytime soon. I was planning a wedding on night and then next night I found was pregnant. So I wasn't ashamed or embarrassed to ask what happens if my uterus tears. Dr. Kraus just looked at me and said "it's very bad." I mean I expected that it was very bad but just because you see something on Grey's Anatomy doesn't make it true. But my assumptions were right and it surely is very bad if that happens. For this reason I am sure that the baby will be delivered by C-Section anyway.
But then there is another reason.
My placenta isn't where it's supposed to be. For those of you who do not know - your placenta should be at least two centimeters away from your cervix. My normal ultrasound was interrupted by an internal ultrasound because it was suspected that there wasn't enough room. Dr. Kraus was optimistic and said that there is probably enough room but we just need to double check. Optimism killed the cat, folks. Not stupidity or curiosity, plain old optimism. My placenta is hardly half a centimeter away from my cervix which is a risk because that can cause bleeding. He said that this can fix itself but I need to play it safe and let any doctor know that no other internal exams can take place for the risk of bleeding.
But wait! There's more!
While this doctor admitted that he doesn't have a lot of information to tell me because he isn't familiar with me and I do not exist anywhere...
Wait. Hold on here's a funny...
Dr. Kraus comes in from speaking with Dr. Kelley and he turns to me and states, "You're a zebra."
You can imagine my face. I've been called many things in my time but never a zebra.
Then he proceeds to say that when students start med school they have a bunch of common sense and some book smarts. And if they heard a sound of hoof steps behind them and were asked what they thought was behind them, the student, before medical school, would say a horse as that is the most likely result. But then by the time they graduate and become doctors that same scenario gets a response of a zebra. The rarest and most unlikely answer but that is what doctors look for - rare and unlikely. He told me this story and then said, 'But you. You are the actual zebra and it is safe to say that no one knows what they are doing now that answer is finally zebra." And he had a zebra tie on today. Comedy of Errors.
Okay back to what I was getting to next.
The muscle weakness issues continue. While neither Dr. Kelley or Dr. Kraus believe that the baby and pregnancy will be affected by this disease of mine, they both, or at least Dr. Kraus, believe that I will be affected by this pregnancy. He is concerned about the calorie intake, as I need more of it and I may not be able to keep up with it, and he is concerned about my breathing in the third trimester. The respiratory system is obviously run by muscles and works extra hard in the third trimester so there is some concern there. He continued to say that he wouldn't be surprised if I would end up going for an amniocentesis at 36 weeks and if Pip's lungs are strong enough and good to go they will do a C-Section and he will be in the hospital until he is okay to come home.
I think besides the whole bleeding to death thing, the biggest issue I had was that the doctor kept referring to Pip as a fetus. Pip isn't a fetus. He's a little person already. He has his personality and he is impossibly stubborn as we have to try to do the anatomy ultrasound again. He couldn't stop moving his hands today and he gave us a thumbs up twice during today's ultrasound. He sat cross legged pretty much the whole time and for most the ultrasounds he can't get over showing us his butt. He has ears that he can hear me with and I am quite sure he smiled for a photo today. He's hardly a fetus. Oh and please don't think that this is the time or place to get into a religious or political debate. He's a person not just a fetus. He's my son.
The doctor did say that their first priority (Kelley's, Hopkins', and his) is to me and to make sure I survive. Even if that means Pip doesn't. I can't really wrap my head around that. I can't imagine going through all of this and not even get to meet Pip. I can't really even comprehend that this is a possibility. To be honest, I really think it effin' sucks. I've always wanted children and, although now is not the ideal time, he exists and he is on his way now. We didn't have to struggle to get pregnant. Hell, we didn't even have to try. I wonder, if things happened in an orderly way, if the doctors would have told me that I couldn't have children, that it would be too risky. So here I am with my little miracle child that I didn't even know would be a miracle (besides all children being miracles) as we go against every odd out there. So I can't help but want to scream at someone when they tell me in not so many words that the choice is going to be me over Pip. From the moment I learned of him, no matter how scared I was, I knew I'd always choose Pip. How can someone else make that choice for me? I mean everyone else is on the other page and agrees that my health and survival comes first. I don't want Pip to not have a mom but how does one recover from that? I know people do it all of the time but Pip and I are buddies already. I just can't see myself bouncing back from that heartbreak. Dann, my mother, brother etc etc are all concerned and drumming into my head that I come first. I am just not on that page.
I've always joked that I would live to be 124 and die of old age because I can't see anything that would take me down after all I've been through. Yes, I have met my match. My 11 ounce match. It's weird because I love him, please don't get me wrong, but each day he gets bigger and each day September comes closer and when I think of the science side and not the emotional side of this, it's like I am a ticking time bomb that just needs to be disarmed in time. Pip isn't aware of this. He just gets mad when I eat too much and there is no room for him. He patiently waits for story time every night and he likes to tick off the ultrasound techs on a regular basis. I mean I think he's pretty cool already. He has no clue that he is a six inch ball of chaos.
So here's to hoping some good news comes our way by the end of the week.
Tuesday, April 30, 2013
Monday, April 29, 2013
Moody Mondays + Maternity Clothes Shopping =
A terrible idea!
I am uber miserable today. I think it's because I am bored and when I am bored I have tons of time to think about how much control I do not have over things. But then I noticed that when I am miserable, all of the crazy people that I know come out to bother me. It's like they have some sort of monitor on me and really know when to get to me. And it was a rainy, crappy day today. I know there is such thing as seasonal depression, but I wonder if there is such thing as a legitimate rainy day depression.
There is nothing glamorous about pregnancy. This glow that people speak of must really be the shimmer make up that I use. People tell me I look great. Really? I mean my self-esteem was the size of a sperm cell before I was pregnant. Now that I am fat and tired all of the time, it is even smaller than that. I had absolutely nothing to do today so I decided to try to find some pants that fit me instead of wearing yoga pants everyday. The sizing was utterly confusing and the prices are outrageous. Yes, I would love to pay $40 for pants that I will wear for the next four months and then never again. Cannot think of anything better I need to do with that money. Nothing like charging you that much when you're not going to wear the clothes that long. Heffer sized clothes at heffer sized prices, welcome to motherhood.
I chose to relax on the maternity pants. To be honest, that band is overwhelming and I wanted to cry when I held up said pants with band. For the love of God, I felt like a beached whale just looking at them. Krissy just laughed in my face when I grunted at them. And then they only had the color I liked in ankle length. Short fat pants. Sweet. Just what the doctor ordered.
Then I asked the lady, who was very nice, about the belly band vs the pant extender. She proceeded to tell me that the band will hide my pants when I cannot button them (did it look like I needed to be reminded of that time) where the extender will make my pre-pregnant jeans last longer because they add five inches. For real? I am really going to gain more than five inches? I DO NOT WANT TO BUY BIGGER CLOTHES, LADY! TELL ME SOMETHING GOOD! So I spent $20 on that pant extender. And I hope they last for the better part of the next four months.
Let's talk about the bras. All of my life I wished to be bodacious however the wish fell on deaf ears. As I got older I gained weight and obviously the ladies got bigger but I was at a size that I enjoyed all around, from bust to belly, the butt was never a concern of mine as I sit all of the time. I have an obsession with knickers and bras. So I have a plethora of both in a variety of colors and coolness. Some have tags still on them. Then I get my arse knocked up! WHAT?! My butt blew up immediately and the ladies just won't stop growing. We obviously do not need to talk about the belly. Be careful what you wish for, folks.My friends say "You always wanted to be bodacious" and kindly remind them that I wanted to be bodacious without getting pregnant. Anyway, I asked the lady what to do about a bra situation and she had the audacity to tell me that I will probably go up a cup size after Pip is born. Apparently, she wasn't aware of the small fortune in bras with tags on them I have sitting in my top drawer just waiting to be worn. And these are cute ones! Ones that I've hunted for and waited for that cannot be used now! I couldn't bring myself to paying heffer prices for these bras. I decided to buy an extender for bras instead. They'll fit me again. They have to. They're so pretty.
I'm also having a bigger issue than normal with homophones and grammatical conundrums that I normally use with ease. I forget things all the time and I have a hard time concentrating whether it's conversation or listening to the GPS. Baby brain is making me insane.
Then my biggest problem is myself. I must say that before I type the rest of this is that I know I am not seeing things clearly and that I am being rather impossible but I am pregnant so it's excusable.
It sucks to have a baby daddy on the other side of the world.
It sucks to not have someone to count on every second of the day (my friends are doing a fantastic job but they don't want to cuddle with me). What sucks more is that Dann is in the middle of preparing for finals and is impossible to talk to. He is busy doing projects and papers and when he isn't doing school work he is at work. I understand how much this time sucks for him. I've been there for like eleven years. I shouldn't complain and I really don't want to complain but sometimes you just want to speak to your other half. Or Someone to lay next to or to cry to because you're so freaking scared of the next four months you want to crawl into a hole and come out for the baby's first birthday and hope that you're both still around for it. I know that I am lucky that Dann is in England and not in Afghanistan or Iraq and I know I am lucky to know when he is coming home and that he is more than likely going to come home in one piece. But it still sucks. He tells me it's hard on him too, but I find that impossible to believe. I feel like a total witch for but not enough to change my mind on it. But until he has to buy bra and pant extenders and make room for his belly and boobs while he's sleeping, I just don't think he should really tell me it's hard on him because the mutation of my body is just the tip of the iceberg.
It stinks when I wake up in the middle of the night with indigestion and would love nothing more than for someone to rub circles in my back. Or someone to watch tv with at night. Or to read to Pip when I am too tired to keep my eyes open. It sucks doing this alone. As I stated earlier my friends and my mom are all doing a great job in supporting me but there are just some things that I want him here for. I am definitely acting like a teenager posting my life on the internet. I should stop now but this is therapeutic and it's my blog so if you don't want to read this then stop!
I'm also annoyed that he goes out when he can talk to me instead. This is not to be taken as I am mad he goes out. I ultimately do not care that he goes out. I care that he goes out and doesn't come home at a reasonable time or in a reasonable condition to talk with me. He hardly goes out. I cannot pretend that he does but I think it was that he went out on a weekend that we were hardly able to speak during the week that did him in.
Again, if I wasn't knocked up I'd be out anyway so what would it matter. Why can't the pre-pregnant Autumn just make pregnant Autumn see things this way?
I do appreciate my friend, Stefanie, trying her hardest to help me see things his way. I also appreciate her turning around and saying that I am right two seconds later even though I know I'm not! The Wrath of Pregnant Autumn has only touched Dann and I'm desperately trying to keep it that way. You may all think I am calm, cool, and collected but once I start yelling I don't stop. I guess that is the Irish in me. So for these people telling me that I am wrong, they are definitely real friends and I appreciate that because I need to stay grounded somehow.
It's like I'm a single mom.
I hate when I am in a store and I see baby mama and daddy all happy as can be looking at baby things while I am hoping that Dann's stupid effin' internet works long enough to hear from him. It sucks. I hate that I have to go to doctor appointments and drag one of my friends with me, and mess with their schedules, because he isn't there to go. I hate what the doctors/nurses/techs must think when they see no dad with me. I feel like I have to explain that my fiancé is in England and we were engaged well before I was pregnant so that they don't think I'm some chick that doesn't know who her baby daddy is or, even worse, this guy is just marrying me because he knocked me up.
I hope that tomorrow is a sunny day and I hope that Pip shows his face at the ultrasound tomorrow because I would love a normal picture of him. I also hope to feel him move soon because I go crazy daily thinking that something is wrong with him because I haven't felt him move yet.
And for the record I strongly dislike the following celebrities Kevin Bacon, Nicolas Cage, David Hasselhoff, Miley Cyrus, Taylor Swift, Kanye West (and Kim by proxy), Chad Kroger, and Alec Baldwin. Especially more today than any other day. Except for Kevin Bacon and Nicolas Cage, I dislike them more and more everyday.
I am uber miserable today. I think it's because I am bored and when I am bored I have tons of time to think about how much control I do not have over things. But then I noticed that when I am miserable, all of the crazy people that I know come out to bother me. It's like they have some sort of monitor on me and really know when to get to me. And it was a rainy, crappy day today. I know there is such thing as seasonal depression, but I wonder if there is such thing as a legitimate rainy day depression.
There is nothing glamorous about pregnancy. This glow that people speak of must really be the shimmer make up that I use. People tell me I look great. Really? I mean my self-esteem was the size of a sperm cell before I was pregnant. Now that I am fat and tired all of the time, it is even smaller than that. I had absolutely nothing to do today so I decided to try to find some pants that fit me instead of wearing yoga pants everyday. The sizing was utterly confusing and the prices are outrageous. Yes, I would love to pay $40 for pants that I will wear for the next four months and then never again. Cannot think of anything better I need to do with that money. Nothing like charging you that much when you're not going to wear the clothes that long. Heffer sized clothes at heffer sized prices, welcome to motherhood.
I chose to relax on the maternity pants. To be honest, that band is overwhelming and I wanted to cry when I held up said pants with band. For the love of God, I felt like a beached whale just looking at them. Krissy just laughed in my face when I grunted at them. And then they only had the color I liked in ankle length. Short fat pants. Sweet. Just what the doctor ordered.
Then I asked the lady, who was very nice, about the belly band vs the pant extender. She proceeded to tell me that the band will hide my pants when I cannot button them (did it look like I needed to be reminded of that time) where the extender will make my pre-pregnant jeans last longer because they add five inches. For real? I am really going to gain more than five inches? I DO NOT WANT TO BUY BIGGER CLOTHES, LADY! TELL ME SOMETHING GOOD! So I spent $20 on that pant extender. And I hope they last for the better part of the next four months.
Let's talk about the bras. All of my life I wished to be bodacious however the wish fell on deaf ears. As I got older I gained weight and obviously the ladies got bigger but I was at a size that I enjoyed all around, from bust to belly, the butt was never a concern of mine as I sit all of the time. I have an obsession with knickers and bras. So I have a plethora of both in a variety of colors and coolness. Some have tags still on them. Then I get my arse knocked up! WHAT?! My butt blew up immediately and the ladies just won't stop growing. We obviously do not need to talk about the belly. Be careful what you wish for, folks.My friends say "You always wanted to be bodacious" and kindly remind them that I wanted to be bodacious without getting pregnant. Anyway, I asked the lady what to do about a bra situation and she had the audacity to tell me that I will probably go up a cup size after Pip is born. Apparently, she wasn't aware of the small fortune in bras with tags on them I have sitting in my top drawer just waiting to be worn. And these are cute ones! Ones that I've hunted for and waited for that cannot be used now! I couldn't bring myself to paying heffer prices for these bras. I decided to buy an extender for bras instead. They'll fit me again. They have to. They're so pretty.
I'm also having a bigger issue than normal with homophones and grammatical conundrums that I normally use with ease. I forget things all the time and I have a hard time concentrating whether it's conversation or listening to the GPS. Baby brain is making me insane.
Then my biggest problem is myself. I must say that before I type the rest of this is that I know I am not seeing things clearly and that I am being rather impossible but I am pregnant so it's excusable.
It sucks to have a baby daddy on the other side of the world.
It sucks to not have someone to count on every second of the day (my friends are doing a fantastic job but they don't want to cuddle with me). What sucks more is that Dann is in the middle of preparing for finals and is impossible to talk to. He is busy doing projects and papers and when he isn't doing school work he is at work. I understand how much this time sucks for him. I've been there for like eleven years. I shouldn't complain and I really don't want to complain but sometimes you just want to speak to your other half. Or Someone to lay next to or to cry to because you're so freaking scared of the next four months you want to crawl into a hole and come out for the baby's first birthday and hope that you're both still around for it. I know that I am lucky that Dann is in England and not in Afghanistan or Iraq and I know I am lucky to know when he is coming home and that he is more than likely going to come home in one piece. But it still sucks. He tells me it's hard on him too, but I find that impossible to believe. I feel like a total witch for but not enough to change my mind on it. But until he has to buy bra and pant extenders and make room for his belly and boobs while he's sleeping, I just don't think he should really tell me it's hard on him because the mutation of my body is just the tip of the iceberg.
It stinks when I wake up in the middle of the night with indigestion and would love nothing more than for someone to rub circles in my back. Or someone to watch tv with at night. Or to read to Pip when I am too tired to keep my eyes open. It sucks doing this alone. As I stated earlier my friends and my mom are all doing a great job in supporting me but there are just some things that I want him here for. I am definitely acting like a teenager posting my life on the internet. I should stop now but this is therapeutic and it's my blog so if you don't want to read this then stop!
I'm also annoyed that he goes out when he can talk to me instead. This is not to be taken as I am mad he goes out. I ultimately do not care that he goes out. I care that he goes out and doesn't come home at a reasonable time or in a reasonable condition to talk with me. He hardly goes out. I cannot pretend that he does but I think it was that he went out on a weekend that we were hardly able to speak during the week that did him in.
Again, if I wasn't knocked up I'd be out anyway so what would it matter. Why can't the pre-pregnant Autumn just make pregnant Autumn see things this way?
I do appreciate my friend, Stefanie, trying her hardest to help me see things his way. I also appreciate her turning around and saying that I am right two seconds later even though I know I'm not! The Wrath of Pregnant Autumn has only touched Dann and I'm desperately trying to keep it that way. You may all think I am calm, cool, and collected but once I start yelling I don't stop. I guess that is the Irish in me. So for these people telling me that I am wrong, they are definitely real friends and I appreciate that because I need to stay grounded somehow.
It's like I'm a single mom.
I hate when I am in a store and I see baby mama and daddy all happy as can be looking at baby things while I am hoping that Dann's stupid effin' internet works long enough to hear from him. It sucks. I hate that I have to go to doctor appointments and drag one of my friends with me, and mess with their schedules, because he isn't there to go. I hate what the doctors/nurses/techs must think when they see no dad with me. I feel like I have to explain that my fiancé is in England and we were engaged well before I was pregnant so that they don't think I'm some chick that doesn't know who her baby daddy is or, even worse, this guy is just marrying me because he knocked me up.
I hope that tomorrow is a sunny day and I hope that Pip shows his face at the ultrasound tomorrow because I would love a normal picture of him. I also hope to feel him move soon because I go crazy daily thinking that something is wrong with him because I haven't felt him move yet.
And for the record I strongly dislike the following celebrities Kevin Bacon, Nicolas Cage, David Hasselhoff, Miley Cyrus, Taylor Swift, Kanye West (and Kim by proxy), Chad Kroger, and Alec Baldwin. Especially more today than any other day. Except for Kevin Bacon and Nicolas Cage, I dislike them more and more everyday.
Saturday, April 27, 2013
The Second Appointment in Baltimore - Round 2
There isn't much to be said in this one. I met with the doctor who will more than likely be the guy I speak to form now until Pip is born. He is more than willing to use the ultrasound photos from up here and he wants me to go to Baltimore every four to five weeks.
He is concerned about the distance as the due date gets closer. He said, "If you happen to go into labor at 30 weeks, we are just going to fly you down anyway." Nothing is easy, aye.
This doctor also believes that a C-Section wouldn't be the best way to go for me. I looked at him like he was crazy. He then continued to tell me that there are women who have a normal delivery that are much worse off than I am. I expressed to him that there is no way I am going to be able to push this baby out and he continued to tell me that there is an assisted delivery method in which the mom doesn't push at all. I mean this all sounds great but what am I supposed to do just lay there? He also isn't necessarily interested in me being induced. What am I supposed to do? Make my delivery happen. He reminded me again and again that nothing is set in stone and that just because he thinks this way would be best for a delivery doesn't mean his colleagues and Dr. Kelley will agree with him.
I appreciate his honesty though. He was kind enough to admit, which I obviously heard before, that they really have no clue what to do with me because I am no where to be found in any textbook or Google search. Of course, if you Google "awesome" I am sure I will pop up then.
So, needless to say, I am anxious. I would never really consider myself a control freak but I definitely would say that I like to have some sort of plan. I begged the OB to at least compromise and let me be induced so that I do not have to have an anxiety about going into labor, and then hitchhiking via helicopter, in Scranton.
I have to go back on May 17. I hope that there is some sort of plan lined up by then. Meanwhile, I will go for another ultrasound (to hopefully get some measurements) in Scranton on Tuesday. I know that many people believe I should be enjoying this time, but I cannot lie I am not. I just want October to get here so I know we are both safe and sound.
I just have to trust that the doctors (who do work for the #1 hospital in the country) will know what to do and are going to come together to provide the best care for Pip and me. I have to trust that the Universe couldn't steer me too wrong, right? And would never leave Pip without a mom or me without a Pip. At this point, I love him already so I can't stand the thought of him not making it.
Onward and upward.
He is concerned about the distance as the due date gets closer. He said, "If you happen to go into labor at 30 weeks, we are just going to fly you down anyway." Nothing is easy, aye.
This doctor also believes that a C-Section wouldn't be the best way to go for me. I looked at him like he was crazy. He then continued to tell me that there are women who have a normal delivery that are much worse off than I am. I expressed to him that there is no way I am going to be able to push this baby out and he continued to tell me that there is an assisted delivery method in which the mom doesn't push at all. I mean this all sounds great but what am I supposed to do just lay there? He also isn't necessarily interested in me being induced. What am I supposed to do? Make my delivery happen. He reminded me again and again that nothing is set in stone and that just because he thinks this way would be best for a delivery doesn't mean his colleagues and Dr. Kelley will agree with him.
I appreciate his honesty though. He was kind enough to admit, which I obviously heard before, that they really have no clue what to do with me because I am no where to be found in any textbook or Google search. Of course, if you Google "awesome" I am sure I will pop up then.
So, needless to say, I am anxious. I would never really consider myself a control freak but I definitely would say that I like to have some sort of plan. I begged the OB to at least compromise and let me be induced so that I do not have to have an anxiety about going into labor, and then hitchhiking via helicopter, in Scranton.
I have to go back on May 17. I hope that there is some sort of plan lined up by then. Meanwhile, I will go for another ultrasound (to hopefully get some measurements) in Scranton on Tuesday. I know that many people believe I should be enjoying this time, but I cannot lie I am not. I just want October to get here so I know we are both safe and sound.
I just have to trust that the doctors (who do work for the #1 hospital in the country) will know what to do and are going to come together to provide the best care for Pip and me. I have to trust that the Universe couldn't steer me too wrong, right? And would never leave Pip without a mom or me without a Pip. At this point, I love him already so I can't stand the thought of him not making it.
Onward and upward.
Tuesday, April 23, 2013
Wrap Up of Today's (4/23) Baltimore Visit
This one isn't really full of good news or bad news. Today was not as exciting as I wanted it to be or as productive as I was hoping for. This is going to be short and sweet because I know some of you are waiting to hear from me; it's been a long day and I just can't be bothered with writing enthusiastically. In fact I am quite pessimistic tonight so you might want to skip this one all together.
The first bump in today's road was the fact that magically, and not surprisingly, the two appointments I had at the OB office were double booked, actually my appointment times only existed in their old system. So I, the tired chick that drove 3+ hours, had to be rescheduled for the appointment.. You'd think they would reschedule one of their Baltimore patient's appointments but I guess that is just me. I have to drive back on Friday for a 45 minute appointment, which means canceling PT again and blowing another $65 in gas. Unreal. BUT they were able to squeeze me in at the hospital for my anatomy ultrasound. Well I must tell you Mr. Pipster was none too happy about his lack of food intake and his mama being annoyed in a waiting room for an hour. He wouldn't show his face to complete the anatomy scan. They said he wasn't big enough to complete it but I think it's really because he wouldn't move. I asked if I could have a picture from this ultrasound. The chick gave me a picture which was zoomed in on his foot. Really? Do I look at all entertained by any of this, lady? Then Miss Mystery Doctor comes in and tells me that everything looks good so far but they want me to come back down in two weeks in order to take another ultrasound because they couldn't complete the measurements. I kindly (with difficultly on the kindly) told her that I was getting an ultrasound and consultation in Scranton and surely they can just send the photos down to Hopkins. Nope. She said, "Yeah, we really don't like to use other people's photos." They are not down with OPP. An upside to that fiasco of an ultrasound, the tech let me audio record (not video, you cannot video record your own child) Pip's heartbeat. I was happy that she snuck that in because that "phoot" photo just wasn't doing it for me. His heartbeat is now my text tone :)
I finally made it to Dr. Kelley, late and frazzled, around 4:00. He was absolutely furious over the scheduling confusion and even more baffled by that doctor, that I really will never see again, not being down with OPP. Hopefully, he will be able to take care of all of that and I won't have to go down on Friday.
So Kelley seemed to have had a rough week too as the "thing" he thought was wrong with me is not wrong with me. The symptoms or markers do not fit my lab work. I am back to where I started. Actually I'm even worse than when I started because what he thought was originally wrong with me isn't wrong with me at all anymore. My body adapted and the speech I would give to those who wanted to know what my story was no longer fits. I'll tell people my old story anyway though because it's better than shrugging my shoulders. Kelley does still believe that the chances of Pip having what I have are extremely slim, but what the heck is slimmer than one person in the forkin' world? I am now concerned that if whatever is wrong with me is wrong with Pip that they do not know what IS wrong with me to help Pip. I mean surely they will be able to keep him alive but I guess I hoped that if he was born like me it would be an easy fix and he wouldn't have to live under the conditions I live with. Dr. Kelley is very optimistic that Pip will be fine but, naturally, I worry. Another upside is that I will be able to stay awake during the C-Section. I didn't anticipate this and I have a bit of anxiety about it because I am sure my nerves will be shot by that point in time but I am also very excited that Dann and I will be the first ones to meet Pip and I won't be the last one to meet him. Surely I should be the first one since I've been carrying him all of this time. Kelley doesn't anticipate any extreme circumstances that would make me have to be put under for the C-Section. Whatever gets you through the night, right?
And lastly, he is still very optimistic for the surgery that would straighten by body out. Naturally that is not even on the table until after Pip is born but it's something that I have been wanting for a long time and hopefully that works out.
So for now Pip and I are going to chill out, listen to the Beatles, and I'm going to read "Oh, the Places You'll Go!" to him. Oh, I am quite sure he kicked me in the ribs when I took the headphones off of my belly the first time I played the Beatles for him. Like he won't ever hear them again.
Sorry I don't have better news for you guys. Sure appreciated all of your support and good vibes the over the last month. Keep them coming for Pip though :)
And I've been up for 21 hours so if there are any errors you can just deal with it because everyone in a while you just need to accept that life is one big run on sentence that you just can't figure out
Wednesday, April 3, 2013
First Visits to Baltimore for the Pipster and I
I know that I said I wouldn't "share" this blog as it was more for me than it was for you readers, but in this instance I think it is okay because I have so many people who care about Pip and me. Blogging it means I can tell you all at once which gives me a bit of peace.
I'll start at the beginning because that is my favorite place to start. I started my morning with an appointment with Dr. Richard Kelley at the Kennedy Krieger Institute at Johns Hopkins. Dr. Kelley and I go way back. He found me when I was eight months old and he's been saving my behind since. Over the last twenty years there was not a need for me to see him so our correspondence was via telephone and then email, and then Pip came along and Dr. Kelley suggested that I come down to get things started to insure Pip's arrival and my survival.
My mom and I spent about three hours with Dr. Kelley this morning. It's important that I cover these details as they will most likely directly affect Pip if everything works out correctly (ha!). At first Dr. Kelley just caught up on what has been going on with me in the last twenty years. He made sure there were no hospitalizations that he wasn't aware of and covered old details that were no longer or still relevant.
He believes he figured me out. This whole time he believed that I had a fatty acid deficit. This is because in the 80s there were only so many tests, screenings, and technologies that were offered to doctors that tried to solve the puzzle called Autumn. However, now he believes that I actually have a mitochondrial myopathy. Yes, the words mean nothing to me as well, but the story means a whole heck of a lot. If this is the story with me then there is a treatment plan, not a cure, which is fine, but a way to cope even better than I have been. He was quite impressed with how much I have improved over time. You have to keep in mind that I wasn't supposed to live to see a year, or go to school, or do anything that I've done. I imagine that when he saw me today he was blown away by this crazy chick who moved to England, fell in love, got engaged and is now pregnant. A long way from CHOP's NICU! So the bottom line is that I donated seven vials of blood to the genetic counselor and Dr. Kelley. We initiated another go at physical therapy and, if this is what he thinks it is, it will all revolve around a new "diet" plan that hopefully will provide improvements to my body and quality of life in time for Pip's arrival.
Dr. Kelley also believes that this has actually been passed down from both my mother and father. I am not certain if I believe this one. I have no reason not to but no logical reason to believe it other than because he told me so, which is usually good enough but up until today it's always been environmental. My concern is passing this to Pip. Dr. Kelley told me that it is a 1 in 400 chance that Pip will get it. The odds are greater if Dann is also a carrier but Kelley also said that the chances of Dann being a carrier if this extremely rare disorder is slim to none. Although all of these odds are great to hear, the outstanding truth is that I am literally one in a million. I am the rare one so odds and I are not the best of friends. BUT a way to look at this is that the doctors know more about my case now than they did when I was born, than twenty years ago, than five years ago. There is more information out there than I ever had AND if Dr. Kelley is right and what he thinks is wrong with me is what IS wrong with me then Pip is already a step ahead of me. I hope and hope that it skips Pip and Pip's kids and grand kids etc because this life is hard but if it doesn't skip him/her the doctors know what to do and what not to do for Pip; I suppose that's all Daddy and I can really hope for. Naturally, I am also hoping that Pip gets my hair and my eyebrows (and my sense of humor) but that Pip is healthy and normal is most important to me. I know I make this life look easy but it's hard every single day there is some sort of struggle. The bottom line is that it sucks to be different and I want for Pip the exact thing that I wanted for myself my whole life - just to blend in with everyone else.
I digress.
Dr. Kelley is concerned about a C-Section just because of the fasting that occurs for the days after the operation. I did express to him that I am very concerned that I do not have the stamina or strength to make it through labor and he understands. I would also like to have a planned C-Section rather than an ER Section. The C-Section will most likely be scheduled at 38 weeks but will be confirmed later.
Another thing is that when I was seven or eight Dr. Kelley arranged for me to meet an orthopedic surgeon at Hopkins, Dr. Sponsellar. I know that I didn't spell that right but I've been up for a long time and had a long day. Google it if you want to stalk him. Anyway, the meeting was to start the proceedings for surgeries that would straighten my body out, hamstrings and legs would be just like yours. Back then Dr. S didn't think that the odds were in my favor. He believed it would be 50/50 that it would be successful or I would end up paralyzed. Those odds, my mother and Dr. Kelley were not comfortable with taking. I have been thinking about it for the last year or so and I brought it up to Dr. Kelley today and he believes that with medical advancement and my improvements it is much more realistic than it was in the past. As long as the odds are better, especially with Pip being around, I will hopefully be looking at surgery within the next two years (year). So the wedding might be postponed a year because if I have the chance to walk down the aisle, you can bet your behinds that I will moonwalk right down to Dann, no wheels attached. And if Pip has a "normal" mom that would make me almost as happy as I would be if Pip ends up normal. I cannot even begin to hide my excitement when I think about standing straight and having muscles that work better than they do now. It's an excitement that you will never understand but I hope you're excited too.
Then we had an appointment with the OB Practice. There is nothing really exciting to tell here because it was just an "intake" appointment. Besides the fact that I donated five more vials of blood to them and that the nurse's last name was Starr and the doctor that I will see first has a first name of Jude (FOR REAL!) there is nothing really interesting to say.
I have an ultrasound Thursday in Scranton.
I go back to Baltimore for round two April 23rd.
Again, I apologize for putting this on a blog but texting a thousand people the same story really doesn't tickle my fancy!
I'll start at the beginning because that is my favorite place to start. I started my morning with an appointment with Dr. Richard Kelley at the Kennedy Krieger Institute at Johns Hopkins. Dr. Kelley and I go way back. He found me when I was eight months old and he's been saving my behind since. Over the last twenty years there was not a need for me to see him so our correspondence was via telephone and then email, and then Pip came along and Dr. Kelley suggested that I come down to get things started to insure Pip's arrival and my survival.
My mom and I spent about three hours with Dr. Kelley this morning. It's important that I cover these details as they will most likely directly affect Pip if everything works out correctly (ha!). At first Dr. Kelley just caught up on what has been going on with me in the last twenty years. He made sure there were no hospitalizations that he wasn't aware of and covered old details that were no longer or still relevant.
He believes he figured me out. This whole time he believed that I had a fatty acid deficit. This is because in the 80s there were only so many tests, screenings, and technologies that were offered to doctors that tried to solve the puzzle called Autumn. However, now he believes that I actually have a mitochondrial myopathy. Yes, the words mean nothing to me as well, but the story means a whole heck of a lot. If this is the story with me then there is a treatment plan, not a cure, which is fine, but a way to cope even better than I have been. He was quite impressed with how much I have improved over time. You have to keep in mind that I wasn't supposed to live to see a year, or go to school, or do anything that I've done. I imagine that when he saw me today he was blown away by this crazy chick who moved to England, fell in love, got engaged and is now pregnant. A long way from CHOP's NICU! So the bottom line is that I donated seven vials of blood to the genetic counselor and Dr. Kelley. We initiated another go at physical therapy and, if this is what he thinks it is, it will all revolve around a new "diet" plan that hopefully will provide improvements to my body and quality of life in time for Pip's arrival.
Dr. Kelley also believes that this has actually been passed down from both my mother and father. I am not certain if I believe this one. I have no reason not to but no logical reason to believe it other than because he told me so, which is usually good enough but up until today it's always been environmental. My concern is passing this to Pip. Dr. Kelley told me that it is a 1 in 400 chance that Pip will get it. The odds are greater if Dann is also a carrier but Kelley also said that the chances of Dann being a carrier if this extremely rare disorder is slim to none. Although all of these odds are great to hear, the outstanding truth is that I am literally one in a million. I am the rare one so odds and I are not the best of friends. BUT a way to look at this is that the doctors know more about my case now than they did when I was born, than twenty years ago, than five years ago. There is more information out there than I ever had AND if Dr. Kelley is right and what he thinks is wrong with me is what IS wrong with me then Pip is already a step ahead of me. I hope and hope that it skips Pip and Pip's kids and grand kids etc because this life is hard but if it doesn't skip him/her the doctors know what to do and what not to do for Pip; I suppose that's all Daddy and I can really hope for. Naturally, I am also hoping that Pip gets my hair and my eyebrows (and my sense of humor) but that Pip is healthy and normal is most important to me. I know I make this life look easy but it's hard every single day there is some sort of struggle. The bottom line is that it sucks to be different and I want for Pip the exact thing that I wanted for myself my whole life - just to blend in with everyone else.
I digress.
Dr. Kelley is concerned about a C-Section just because of the fasting that occurs for the days after the operation. I did express to him that I am very concerned that I do not have the stamina or strength to make it through labor and he understands. I would also like to have a planned C-Section rather than an ER Section. The C-Section will most likely be scheduled at 38 weeks but will be confirmed later.
Another thing is that when I was seven or eight Dr. Kelley arranged for me to meet an orthopedic surgeon at Hopkins, Dr. Sponsellar. I know that I didn't spell that right but I've been up for a long time and had a long day. Google it if you want to stalk him. Anyway, the meeting was to start the proceedings for surgeries that would straighten my body out, hamstrings and legs would be just like yours. Back then Dr. S didn't think that the odds were in my favor. He believed it would be 50/50 that it would be successful or I would end up paralyzed. Those odds, my mother and Dr. Kelley were not comfortable with taking. I have been thinking about it for the last year or so and I brought it up to Dr. Kelley today and he believes that with medical advancement and my improvements it is much more realistic than it was in the past. As long as the odds are better, especially with Pip being around, I will hopefully be looking at surgery within the next two years (year). So the wedding might be postponed a year because if I have the chance to walk down the aisle, you can bet your behinds that I will moonwalk right down to Dann, no wheels attached. And if Pip has a "normal" mom that would make me almost as happy as I would be if Pip ends up normal. I cannot even begin to hide my excitement when I think about standing straight and having muscles that work better than they do now. It's an excitement that you will never understand but I hope you're excited too.
Then we had an appointment with the OB Practice. There is nothing really exciting to tell here because it was just an "intake" appointment. Besides the fact that I donated five more vials of blood to them and that the nurse's last name was Starr and the doctor that I will see first has a first name of Jude (FOR REAL!) there is nothing really interesting to say.
I have an ultrasound Thursday in Scranton.
I go back to Baltimore for round two April 23rd.
Again, I apologize for putting this on a blog but texting a thousand people the same story really doesn't tickle my fancy!
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