Friday, July 30, 2010
As you can see, we went through with our decision to induce early, and when all was said was done, it was the best decision we could have made.
I learned a lot over these past eight days. There's a lot I want to share with the hope that you find it useful when it's your turn to deliver. The truth is, I'm having a hard time deciding where to start, so I apologize in advance if this is all a bit disorganized.
I guess I'll begin with the story, and once we have that down, my future posts will discuss certain areas in more detail.
Our plan was to have the amnio to test for lung maturity, return to the hospital that same evening to have my cervix ripened (is it just me, or does that sound gross?) with a little inserted tablet used to jump start stuff down below. In theory, the tablet softens the cervix and thins it out in preparation for a pitocin induced birth.
I'd sleep and let the tablet do its magical thing overnight, and they'd start the pitocin drip at 6am the next morning. Contractions would start within an hour or two, and we'd be on our way to Babytown.
I wish I could blame the next events on Lyme, but I can't. I feel like it's important to share this, though, because I was under the impression that labor would be so painful that all Lyme symptoms would take the backseat during childbirth, and I would only focus on the dominant pain.
Here's my disclaimer: Every labor is different, just like every case of Lyme is different. My Lyme is severely neurological and goes way beyond joint pain, mental fog and headaches. Therefore, some people with annoying but tolerable symptoms might actually avoid any bothersome symptoms while delivering. Please don't be scared off by this story, because I swear, not a single bit of pain matters once you hold that little baby for the first time. For the record, within twenty minutes of first meeting our son, I told my husband, "We're doing this all again next year right?" It was the most rewarding experience of my life.
So first off, I went into the delivery room at 6am as scheduled. To my dismay, the tablet didn't work. At all. This was a surprise to me, as I'd actually started having mild contractions about an hour after they inserted the tablet the previous night. I thought for sure I'd be at least three centimeters. So it goes...
As for Lyme symptoms, there was no significant increase, but the twitches were present as usual. I was running on pure adrenaline, so fatigue was not an issue.
They started the pitocin, and within thirty minutes I was having contractions that were two minutes apart. They were definitely stronger, and I swore I'd end up like my mom, who popped out babies like they were torpedoes. The nurse told me the contractions needed to get stronger and more consistent before the party really started. So we waited.
Fast forward six hours. They checked my progress. One freaking centimeter. ONE. I was discouraged, but I still had hope. The doctor broke my water in order to get things moving, because I was complaining that the contractions were starting to get really intense, and I wasn't allowed to have an epidural or block. My neuro symptoms began to worsen, and this surprised me. My twitches were more frequent, I had muscle fatigue, and numbness in my legs. I chalked it up to being tired, as my symptoms always flare up when my body has been under physical stress.
Here's where things get interesting:
When you're in labor, you're hooked up to two belts. One tracks the baby's heart rate, and the other records your contractions. I'd officially been in "real labor" (not counting the start of labor the previous night) for 11 hours. I was in screaming pain (though turns out, I'm not a screamer--I now know I prefer silence during labor) and the nurses kept telling me, "Just wait, it's going to get a whole lot worse," because the monitor was showing very mild, sporadic contractions.
I had been told that "Just when I felt I couldn't take it anymore" was when babies usually showed up. Well, I was nearing that point. Twitches and nerve pain had taken hold, on top of contractions that seemed like they were never ending.
I was also told that I couldn't be having contractions for long periods of time and that my constant pain was probably just the baby settling. The contraction monitor was showing "nothing significant," even though I begged to differ. Fortunately for me, the evening nurse shift was about to take over. My new, amazing nurse was concerned that I was in so much pain, and she ordered a new contraction monitor that measured things internally. Just so you know, it IS possible for a traditional belt monitor to not work on some people.
She left and came in thirty minutes later as I was panting through yet another contraction. I said, "Is it possible to have a five minute long contraction?"
Her response after looking at the printed recording: "Seeing as you've been contracting for twenty minutes straight without a break in them, yes. How are you even talking right now?"
I swore the baby was about to come any second. There was no way this could last much longer. I started to get really excited, and the nurse called the doctor in. Time for a check--and then--two. TWO measly centimeters. Thirteen hours of labor. I started to cry. Like, really cry. The doctor stopped the pitocin immediately, and I yelled something about how they should have believed me earlier that I was having abnormally long contractions.
Just so you know, there is definitely a testy Sara. This Sara hates doctors, hates childbirth, HATES Lyme pain during childbirth, and in the heat of the moment will say things like, "Cut him out of me now or I will do it myself." If it's any consolation, I said please. Then I cried and twitched some more.
Once pitocin stops, contractions are supposed to taper off right away. My body decided to rebel and the contractions actually increased in intensity. My doctor, who was excellent in handling this whole situation (I should have given her props earlier--she truly was great), decided enough was enough. I was gray in the face and my blood pressure was dropping (though the baby maintained an awesome heartbeat throughout labor), and I was not going to progress. If I did, it would have been at least another nine or ten hours of labor, to which I said "Aww heeelll no."
Because of the neuro damage factor, I had to be put completely under for an emergency C-section.
I was really scared as I said goodbye to my husband. I didn't feel defeated--I was more than ready, but I was sad that we weren't going to be able to share that moment of birth together. And of course I had thoughts like "What if I don't wake up?"
He had to wait outside during the surgery. I told him I loved him and to kiss our boy for me. Then I went to sleep.
When I woke up, I waited impatiently in recovery and asked a million questions. Was he healthy? Were there complications? Who did he look like? Did he have hair? Those were the longest 45 minutes of my life.
He was healthy, cord blood was gathered for testing, his Apgar score was awesome (a 9 at 36 weeks!).
The only issue was that he was literally stuck. It took a while for the doctor to get him out, as he'd wedged himself somewhere between some bones, and it seems as though he had been there a long while. That explains the mystery aches and pains and also why he never really changed positions throughout the pregnancy. He'd borrowed his way into some uncomfortable territory.
So whether the labor lasted 15 hours or 48, it would have ended in a C section anyway! Goes to show you that you can plan all you want--your baby might have other plans!
My husband came in and we shared happy tears. Then came our beautiful baby boy. 7 pounds 11 ounces of perfection. Never in my life have I experienced so much love. As cliche it sounds, it's a love that you don't really know exists until you hold your baby for the first time. And for a short time, there was no labor or surgery pain, there was no such thing as Lyme disease or years of treatment, or worry about congenital transmission. It was just a mama and a daddy and a new baby, and life was so good.
That's my story and I'm sticking to it.
I'm off to change a diaper, but please stay tuned for info about how we dealt with Lyme in the hospital, reactions from doctors, future treatment and baby testing, and what the recovery process has been like. As always, any questions, let me know and I'll be glad to share any info I have.
Saturday, July 24, 2010
Tuesday, July 20, 2010
As you know by now, my neuro symptoms have become a huge problem during these past few weeks. The electrical surges are quite painful, the twitching is embarrassing and restricting to say the least, and the lack of sleep it all causes is not helping. I am tired of being curled up and crying in pain. Physically and mentally, I can't take it much longer.
Surprisingly, I got the letter I needed from my LLMD stating that I would have an antibiotic change as soon as I deliver the baby. This means I can have induction approved.
It's been one week since my OBGYN decided it would be best for all parties to induce labor (at 36.5 weeks), and I went for a checkup yesterday so she could confirm that this was still the best approach to take.
It's amazing how slowly some things move in the medical field. Lyme treatment approval, for example. That crap can take months and doesn't come without a fight and filling out tons of paperwork. On the other hand, you want make a baby come out? They'll have your world turned upside down in a matter of hours. "OK, can you get to the hospital for your preliminary testing in an hour?"
Ummmm, no, I can't.
So here's the deal: tomorrow morning at 7:15 I arrive at Labor and Delivery to have a non stress test which will be followed by an amniocentesis to determine if Wyatt's lungs are fully developed. It's standard that they do the amnio, even if they believe all is well, because they can't authorize an early induction (before 39 weeks) without one. They're covering their butts, but most importantly, they're covering all bases to make sure they're not rushing things.
I've read about a million posts out there from moms who scorn anyone that decides to approve the induction procedure, as childbirth is natural and you shouldn't rush nature/God/your baby, what have you. It's selfish and the baby will come out on his own schedule. These are also the women who vehemently demand that all women breast feed, and if you don't you are obviously a bad parent content with pumping your kid full of Satan's nectar. My answer to them is piss off.
You have to do what is right for you and your child, and quite frankly, I don't think any of these women have experienced severe neurological pain.
I obviously don't have experience with the whole childbirth thing, as I am a first time mom, but I already know how tricky pregnancy is when dealing with Lyme, and I don't imagine labor will be any different.
In fact, I just had to leave this blog post to take a call from my OBGYN (this is the third call so far today in getting everything ready.) She said that they've met with all of the nurses and doctors to explain my situation (I'm a sick, convulsing mess) and all agreed that a vaginal delivery would be best, BUT the anesthesiologist won't give me an epidural or a block due to my nerve damage. There is a chance that if I get the epidural, there will be more permanent damage to my nerves, and I may actually lose some feeling forever (no thanks).
If for some reason I need a C-section, they will have to put me under. I've had this news for about two minutes, so I don't know how I feel about it yet. My first reaction is that I am sad and afraid. I can't imagine not being able to hold my baby right away, and it takes about an hour to wake up after it's all over. Fingers crossed for no section. I guess in the end this is good info to keep in mind if you have nerve damage?
So, amnio in the morning. Test results come back within a few hours, and if he's good to go, I check in at the hospital tomorrow night to start the induction process.
As I type this, I am really having second thoughts about going through with this. I have huge amounts of anxiety now, and I wonder if it would just be better to suffer through the next month. I still wouldn't be able to get the epi, but my chances of a c- section drop a bit, and I wouldn't have to deal with pitocin contractions (which I hear are super hard and extra evil). But if I chicken out, it's still a month's worth of sleepless nights and painful days, so that all evens out, right? Ack!
After all of this new information, my main issue comes from the end of the phone conversation when my doctor said something along the lines of,
"I want to make sure we're prepared, so I've called two other high risk doctors in the area. They've all assured me that Lyme is not a problem for the baby, and anyone that tells you that your baby can get it has very outdated information. I even talked about it with Dr. ____, your pediatrician, and she agrees that Lyme won't be a problem for the baby."
Noooooo! You were on my team! Not that I want my kid to come out a Lyme baby, but seriously?! You now want to deny Lyme exists in infants and tell me my pediatrician will deny it as well, less than twenty-four hours before I go to the hospital to deliver? She was trying to reassure me, I know, but now all I can think of is how every single one of these doctors is part of the "enemy" camp.
I need to stop this rambling now and clear my head. I'll post an update when I come to the most rational conclusion.
Any experiences/suggestions are welcome. What would you do?
Wednesday, July 14, 2010
I've never done any "DIY" testing, meaning, I've never had blood vials sent directly to my home with the expectation that I'd coordinate the blood draws, so I thought I'd share some updated infant Lyme testing info in case you're like me and you feel out of your comfort zone when you receive your IGeneX test kit in the mail.
Initially, I posted this on cord blood testing for Lyme.
Here's a little more info now that I've seen the kit and talked to my doctor:
This is a picture of the kit as it arrived in the mail. They send you all the packaging you need to send it right back out again via FedEx. There's a Fed Ex form in the package checked for two-day mail. Either the hospital can take care of the whole collection process when they collect the blood, or you can call the Fed Ex number posted on the mailing slip and they will come collect it for you. Just tell them that the contents are blood samples and are time-sensitive. (It says on the IGeneX package that the blood must be tested within four days, so that gives you a bit more time--your partner won't be running around like a lunatic trying to find a Fed Ex facility.)
And here's what it looks like all opened up. Two vials for the cord blood collection. Plain and simple.
The trickiest part is going through the packet of forms they send. There are about seven sheets, but you'll probably only use two of them, as they're mostly info sheets. One lists the different kind of tests and the prices (this doesn't mention test you're doing, #477, $235). It's good to look at, though, in case you and your LLMD decide to test for other things, especially co-infections. My Bartonella has flared up like a mofo lately, so we added that to the mix (at an additional cost of around $250).
Then you have the actual info form. You fill your baby's info (do as much as you can before you deliver, that way all you have to do is enter the birthday when it happens) and select the testing you want done. The infant panel #477 is an option on this form, and that's the one you definitely want to check.
IMPORTANT: I originally mentioned that you didn't need a doctor's order for these tests. That wasn't entirely correct. You don't need an order to request a test. YOU NEED A SIGNATURE FROM YOUR DOCTOR in order for IGeneX to accept the blood samples and have them tested. There's a section for your doctor's info and signature on the sheet you fill out for testing. Your LLMD can sign it or your OBGYN. Doesn't matter who orders it, as long as you can legally call them a doctor.
Finally, just to make sure that your OBGYN knows what's going on, I recommend bringing in the test kit to him/her during one of your prenatal checkups. I did that yesterday, and she greatly appreciated the heads up. She said the testing is super easy, and they do things like this all the time. For some reason, I still felt the need to justify my wanting to test the cord blood. Her response: "Well, you might as well! You could catch a problem early if there is one, and it would be a shame to waste the blood because we just throw it away anyway!"
She signed the form for me beforehand, so on delivery day there's nothing to worry about.
Once you have all of it filled out, put the entire kit in your overnight bag for the hospital so you don't forget it on your delivery day.
Tuesday, July 13, 2010
First, thank you all for the support you've given me this past week. I've received a bunch of great emails and comments, and it means a lot to know that I'm not alone as my symptoms completely drive me nuts.
As I mentioned, I had my OBGYN visit today. She asked how I was doing, and I could barely keep the tears in. My response: "I try really hard to come in smiling and not be a problem patient, but I am so sick right now I can't even fake it. I can't live like this anymore."
She asked about my symptoms, about how the baby is acting inside my belly (he's still a happy, karate chopping jumping bean), and then she caught glimpse of the endless twitching.
"Wow. I've never seen you this bad before."
Tell me about it.
"Have you ever had a patient like this before (with so many neuro problems)?"
I was slightly disappointed to hear that she hasn't.
It doesn't help that she caught me on a day when I'm running on three hours of sleep (the bone pain and electricity kept me up, and I finally caught a nap after I watched the sun rise.) Sleep deprivation = extra twitchy and my eyes were little puffy slits.
I'm not trying to make this overly dramatic--let's just say I'm looking a little rough these days.
After the normal monitoring and testing, she said that my cervix is thin, but I'm not dilated yet. We talked about what was going to happen right after birth, and I relayed the info I'd gotten from my LLMD--we're limited to Zithromax for the remainder of the pregnancy, but the second this guy comes out, I can switch to something more effective for me. I told her I planned to have my bottle of Minocycline with me at the hospital (it's already filled) so I can at least start on something better right away. (IV is not an option at this time for many reasons, but mostly because I just don't want to deal with it.)
Then she surprised me:
"Living with this much pain is torture. If you can get better treatment as soon as you give birth, then I think it's time to evict this baby. "
I couldn't agree more. That said, we have to make sure baby is healthy and ready to be evicted first, because it really is all about him. OBGYN consulted with a couple of other doctors, and they agreed that an early induction would be best for all, but I need a couple of things first:
1. An induction can't get approved unless my LLMD writes a note saying that my Lyme treatment will change after I give birth. Sounds simple enough, but from the beginning, LLMD has been hesitant to help with anything baby related (a case of covering asses, I'm sure), so we'll see how that goes
2. On Monday I will have to go in for another weekly OBGYN checkup to see if I've dilated or my symptoms have improved (I can change my mind about induction at any time, especially if I'm feeling better). If I'm still a twitchy crying monster, we will proceed with an amniocentesis
3. I'll have the amnio to make sure that Wyatt's lungs are developed and all is well in baby town
4. Regardless of my pain and weakness, I'm still on board for trying to deliver vaginally, so if the little guy is able to take a big breath of air, I will be induced.
I'm assuming all of this will take a week, which puts me at a delivery of right around 37 weeks (technically considered full term.) If all moves quickly, though, we're going to be parents NEXT WEEK. (Holy crap.)
Talk about a major surprise.
To celebrate, I had my husband buy me a box of Benadryl. Hoping that antihistamine will knock me the heck out so I can rest up for the craziness that's about to take place.
I'm ready and I'm not ready. A lot to take in all in a day, but I just keep thinking about the prize at the end. Wyatt will be safe, and I can start a new treatment plan instead of continuing on this declining path. And, oh yeah, I'LL BE A MOM!
All I want is to be able to be there for my son. I want to enjoy those first few weeks of his life where everything is new and beautiful and somewhat surreal. We are almost a real family! No matter what, Lyme Disease will not take that from us.
Monday, July 12, 2010
I haven't been able to write as much as I've wanted lately, though I will report that I have doctors appointments tomorrow, which will allow me to give you some more updated information on Lyme testing for infants (I got our test kit in the mail!), as well as an LLMD's advice on what to do when you're in so much pain that all you can do is lie on the couch and cry.
Sadly, that's been my life for the past week, as symptoms have flared up to an excruciating level (dead arms and legs, clawed hands, and the lovely sensation of a very strong electrical current running from head to toe. It doesn't quit.
My fatigue is indescribable, and all I can think is, "For the love of God, please C-section me and get this baby out because there is no way I will have the strength to get through labor. At least not when I can barely move half of my body and I'm twitching uncontrollably. In my perfect world, Wyatt comes early, and the second he lets out that first amazing cry, I start popping a wide assortment of stronger (less expensive) antibiotics.
I am usually one to take a positive, optimistic approach, but I'm afraid I have nothing good to offer today. This just plain sucks.
The somewhat good news is that there's less than five weeks until my due date, if I make it that long (I swear, I am going in there tomorrow begging for early induction or C-section).
My fingers are crossed for a miraculous recovery of sorts--you know how crazy Lyme can be--you want to keel over and die one minute, and then the next day symptoms can lessen for no reason.
Actual info with less complaining coming to you soon.
Tuesday, July 6, 2010
So you've devoted the past nine months to making sure you do everything in your power to keep your baby Lyme free. Safe antibiotics throughout the pregnancy, lots of vitamins and approved supplements, extra rest, but mostly prayers and crossed fingers because you know there's still so much unknown about the disease, so all you can do is hope for the best.
I'm not one to offer a strong opinion here, as I'm aware that everyone's Lyme journey is different, but I will break my rule and urge you to do one thing: Test that little babe as soon as he or she comes out. Even if the tests aren't always accurate, there's a chance you might catch those little buggers before Lyme takes hold for the long run. You've got nothing to lose but some money, and it will cost you a hell of a lot more to treat than it will to prevent.
Prior to last week, I had no idea about where to go or what to do in terms of testing once the baby is actually born.
As usual, number one thing to do is make sure all of your doctors are communicating about your progress and treatment course (even if communicating means you personally deliver updated information regarding your status and charts).
It took a little bit of going back and forth between OBGYN and LLMD, but I came across the following information
(Keep in mind, there are probably a bunch of different ways to handle testing, and your doc might offer something different. Please share if that's the case. This is just one option):
IGeneX, the same super-awesome lab that does all of our adult Lyme testing out in CA, also offers cord blood testing for infants. It's not something I've seen on the main site, but when I contacted customer service via email, they promptly responded and gave me the following information:
* The blood testing they do comes from the cord blood and is collected painlessly and immediately after birth
*You can request to have a test kit sent to your house (no doctor order necessary--you can do it yourself) by emailing customer service or calling them
*You'll want to order the test kit a bit early (maybe a month or so? You never know if junior is going to show up unexpectedly)
*For reference, the test number to request is #477
*There is no immediate charge. They will send the test directly to your house. You will enter your credit card number on the form that goes along with the blood sample to be sent in, and you'll be charged once Igenex receives the sample
*The cost of the test is $235 (A hell of a lot less than what I expected/compared to adult testing, so I'm wondering if it's not as extensive as other tests. Sorry, don't have any info about that yet.)
*Whomever delivers your baby will know in advance (have this conversation earlier than later!) to collect the cord blood in your kit
*I'm not exactly sure how blood-sending works. Common sense tells me you can't legally leave the hospital with vials of blood, so I'm assuming the hospital staff will send it out to IGeneX. Again, make sure your delivering doctor knows this in advance
*Results are sent to your home. It's up to you to report the findings back to your LLMD
*If there aren't any spirochetes found in the cord blood, chances are, the antibiotics worked! If they do find traces, obviously, whatever goes through that cord goes to baby. I hope none of us have to experience that, but if it happens, it's not necessarily the nasty, lingering, chronic Lyme that we have. My LLMD said that if it's caught early like this, we'd just put our little guy on a baby dose of antibiotics
There's always the possibility that the baby will test negative but will display Lyme symptoms later on down the road (my LLMD recommends testing the baby again a few months after birth, just to be safe), but let's stay positive for the time being.
It's good that we're not in the dark about our own disease, and we know what to look for. As you probably know already, some symptoms can be sneaky, and a two-year-old isn't going to be able to say, "Mommy, I have vertigo, fifth cranial nerve swelling, and some neuropathy!" In addition, keep an eye out for unexplained pain, developmental and speech delays, signs of Autism, and neurological symptoms.
Again, I do have faith that since we know the drill and we know what we're treating, we won't have to become the horror stories we sometimes read about. It's all about being proactive and staying educated.
I will post more info on testing as I get it. In the meantime, take care, and keep cool (it was over 100 degrees here today! No one wants a cooked baby. Or a melted mommy!)
Thursday, July 1, 2010
Parenthood is rapidly approaching now, and it seems like each day we're doing something new to prepare for our little addition. Part of this preparation has involved making sure that all doctors are on the same page when it comes to symptoms, progress, and what to expect during the birthing process.
On top of that, it's good to keep an ongoing list of those last minute (but important) questions, and make sure they're resolved before the big day gets here.
Specifically, here are some things I made sure to discuss with my doctors this week (along with their responses):
1. (OBGYN) Q: Based on my current physical condition, are we still on schedule for a natural childbirth?
A: Yes, a natural birth will be fine, and if there are complications, a C-section is a safe alternative.
2. (OBGYN) Q: Banking cord blood seems to be the latest and greatest thing right now. Is it worth it, or is just another way of sucking a couple grand out of consumers?
A: The patient response has been 50/50. Some are all for it, some people pass, because it's still relatively new. I can't tell you what to do, but I will say that they are discovering more and more uses for the cord blood every day. If you have the money, it might be worth looking into, but again, it's a personal decision. If you decide to do it, just check with your Lyme doctor to make sure the blood is not damaged from the Lyme. I'm not familiar with that aspect.
3. (LLMD) Q: I'm considering banking my baby's cord blood. What are the chances it's infested with nasty little spirochetes? Is it worth saving, or would I just contaminate my child if the cord blood use was ever necessary?
A: You can bank the blood. If you want to bank it, just have it tested first. You can request that they test it for Lyme at the hospital once the blood is collected and before it's sent out to the banking facility.*
*I am a bit skeptical about this, as we've all done the research--often times standard Lyme tests are falsely negative and not sensitive enough to pick up on the infections. At the same time, some testing is better than no testing. But ultimately, I'm still not sold on the whole banking the blood thing. From what I've read, these private companies are preying on scared new parents (no surprise there), and it's not worth it in the end because other people's stem cells are more effective anyway in the fraction of a chance you'll ever need them. Anyone have any input here? Did you bank your baby's blood, or have you decided to do so after you deliver?
4. (LLMD) Q: After I give birth, can I IMMEDIATELY switch my antibiotics to something a little more aggressive?*
*I am not breastfeeding, and my insurance doesn't cover my Zithromax Rx (which barely does any good anyway), so I'm paying over $400 a month on antibiotic pills alone. I've actually had to skip a few weeks here and there because we couldn't afford to fill the bottle.
A: Yes, you can switch back to one of the orals you were on pre-pregnancy, especially since you still have some filled in your cabinet. We can assess if another round of IV is a better option once we see how your body handles the birth. But give it AT LEAST two to three weeks on the Zithromax orals post delivery before you start thinking about more aggressive treatment. The time after childbirth will be a very important time for restoring balance and testing to see how much you can recover naturally. You don't want to rock the boat. We'll see you a month after the baby is born to further assess.
I'm sure there were additional questions, but this is what my foggy brain recalls so far. I'll post more as I think of them. Right now, it's time for my after-breakfast nap. Pathetic, I know. Go ahead and laugh, and then get back to me when you're nearing the end of the third trimester! (I've heard we should enjoy nap time now, as we will forget what sleep even is sooner than later.) I say bring it on!