Breastfeeding Revisited

A while back I posted my initial thoughts on breastfeeding based on my doctor’s recommendations. During a time when many women and doctors are militant and sometimes downright mean about the importance of breastfeeding, I had to work hard to get past the embarrassment and guilt over my choosing to go straight for the can of powder mix. By the time pregnancy was over and I’d weighed my options a million times, I was totally fine with my decision to have a formula fed baby.

Wyatt did fine with Similac in the hospital. The nurses were surprisingly supportive and were happy to feed him during the night so I could sleep. When the subject of breastfeeding came up with any of them, they were quick to tell me the formula was just fine and that I had a medical condition that prevented me from being able to feed him any other way. At first I was impressed by such forward thinking. Maybe doctors and nurses were finally entertaining the idea that spirochetes can transfer through breast milk? Not so much. In fact, I recommend not even discussing milk transmission unless you have to or if you want to be told that your Lyme information in severely outdated.

I soon found out that they were commenting on my upcoming medication switch, which was deemed necessary because my symptoms were so bad. I was so caught up in spirochete transmission through breast milk, I didn’t even consider that I wouldn’t be able to breast feed, because all of the medications that actually work for me wouldn’t work for baby. Something to keep in mind, especially if you have a bunch of allergies and your antibiotic/supplement options are limited: Breastfeeding might not be an option at all, even if you want it to be.

Fast forward to my first week at home. I hadn’t started any not-safe-for-baby meds yet, because I was terrified of a herx on top of C-section pain. Formula feeding was going very well, but my baby blues had started to kick in, and weird things were happening to me emotionally. Mostly, I’d get weepy at feeding time. It had nothing to do with Lyme. Nothing to do with the icky chemical ingredients I read on the back of the formula can. It was purely natural, instinctual, kind of like an animal-- Wyatt would cry for food and I yearned to breastfeed. Like I HAD to. My boobs actually hurt as he sucked on his bottle, and it broke my heart that I had all of this milk to give him, and I felt so unfulfilled measuring out the powder instead.

So I said screw it. I’m going to breastfeed him. The chance of transmission is so rare, and I’m learning more and more that I’ve been panicking for no reason, though I’d have to put off taking different, stronger doses of antibiotics. I talked to the pediatrician, who loved the idea, but I admit that I didn’t tell my LLMD because I’d get an earful. (Sometimes I choose to follow my strong instincts and not the advice of the doctor.)

I spent an hour in a hot shower massaging my breasts, trying to get the milk to come back. I thought I’d lost it, because it had been so long they didn’t even hurt any more. But eventually it came back, and I happily prepared myself for the glorious bonding experience I’d envisioned.

Wow. What a letdown.

Granted, I know breastfeeding takes practice and things would have gone better if I’d learned in the hospital and gave it time, but it was painful, and it was awkward for both of us. Wyatt latched on fine, but I swear, he didn’t like it. He fussed for a long time and then opened one eye up at me, as if to say, “WTF Mom?!”

That pressing need to breastfeed vanished as quickly as it came, and Wyatt was as happy as a clam when I gave him a bottle instead. As if to reassure me that I’d made the right choice, I had a bad symptom night that same evening and knew it was time to start taking my meds. (For the record, I’m feeling awesome now on Minocycline, which is not baby safe.)

Obviously, I can only comment on my own experience. You might try breastfeeding, do well with it, and love it. I just wanted to let you know that if you’re having guilty feelings about choosing not to breast feed (or if you’re unable due to meds), my feeling is that even though it’s the favored choice for babies, it’s not all it’s cracked up to be.

As for the idea that mother and child bond better when they breastfeed? I disagree. I’ve experienced intense bonding moments while feeding my guy his formula. We have a routine now, I’m understanding his needs, and he’s a very happy baby.

Overall, life is good. I’m happy I tried breast feeding because the need/curiosity would have driven me completely nuts, but I stand by my original decision to play it safe and stick with the bottle. Just do what works best for you and your family and follow your instincts.

Photo from Babble.com

Mental Recovery

After writing about the physical concerns of Lyme pregnancy and recovery after birth, I stopped and asked myself what the hardest part of this whole process has been. I was surprised that it had little to do with the physical aspects.

Maybe I’m the only moody, neurotic mess, and other mothers cope well with the stress and worries that come with a chronic condition. I have a feeling that’s not the case, or else you wouldn’t be searching for pregnancy information or even reading this blog for that matter. The idea of becoming pregnant after a long, hard battle with treatment can drive you crazy!

From day one, I was prepared for being physically uncomfortable. Hey, pain is nothing new, right? Chances are, if you’re considering getting pregnant or you are engaging in activities that will get you pregnant, you’re feeling decent. At the very least, you’ve had times in your not too distant past where you were much much sicker.
I’m not a doctor, but I can pretty much guarantee that pregnancy will have its ups and downs, but is not going to set you back to day one--that awful time right before you were diagnosed and at your wit’s end.

That said, I was completely ill equipped to handle my emotions both during and after pregnancy. My original fears about being a sick mom who was often times dependent on others for help came true in a hurry.

When I’m having a sick day, does dragging the Pack and Play over to the couch and caring for my baby while lying down make me a bad mom? How about having my husband work an insanely long day only to come home and take care of the baby during the night because I need extra sleep? No, it doesn’t, but the guilt and feelings of inadequacy over not being able to pull my weight eat away at me.

I want to be the mom I’ve always envisioned. The mom that’s always on top of things and brings her baby out all the time to explore the world. The mom that breast feeds. The mom that dances with baby in the living room and rocks her fussy little one back to sleep in the early hours of the morning. Unfortunately, a more realistic description right now is the mom that begs her kid to stop screaming for a minute because her migraine is so bad she can’t focus.

I don’t imagine any of this will be permanent, and as he gets older I will get healthier and stronger. Just be prepared because the first month or so might seem pretty bleak as you learn by trial and error what you’re capable of and what is unrealistic.

I try to keep in mind that a baby has no clue you feel like crap. He will never remember that your house was a mess or know the difference between a solid hour of active play time or a quiet cuddle on the couch. And contrary to what Babies ‘R Us tells us, babies need very few things. They need food, sleep, diaper changes, and they to be loved, held, and kept warm.
We don’t use half of the crap we bought for Wyatt, and out of all of the rattles and little toys we received, he prefers to stare at the little man on a canister of Quaker Oats. Go figure.

It really is a simple life if we can train ourselves to see it that way, and parenthood is completely manageable if we keep the right mindset. The hard part is not giving in to the sadness and frustration that occurs on days when we just can't get into gear. All I can say is try to be easy on yourself. You'll end up doing what you can, and that will be enough.

Physical Recovery

I gave myself a month to test the waters before writing this. I didn’t want to get too excited if I felt great after delivery, because we all know how unpredictable this disease can be. I also didn’t want to scare the crap out of anyone if I complained that I felt like death the first few weeks. No surprise here--it’s been a mix of both good and bad.

The first three weeks after delivery I felt pretty damn good. The sudden loss of at least ten pounds (I still refuse to weigh myself) helped my mobility tremendously (even after a C- section). I could breathe better, I didn’t waddle, and all the swelling subsided a bit. With less stress on my body, my Lyme symptoms diminished greatly, and for a lovely few weeks, we were a normal family--beaming and happy, yet entirely exhausted and zombie-like from lack of sleep. That was fine, because it seemed “normal” to me. No one sleeps the first couple of months!

Well, that mentality is what got me into a bit of trouble.

We were lucky enough to have help the first couple of weeks. My mother came to stay with us for week one, and my mother-in-law took the second week shift. My husband had to go back to work right away, so the help was truly necessary. I would take care of the baby during the day, and my husband and family would take turns doing the night shifts so I could sleep and recover from surgery.

Regardless of the night sleep, I was still exhausted. But I felt as though I was doing a good job being a mom, so when the help had to leave, I took on the night shifts every other day to help out my husband, who works hard in a hot kitchen for 13+ hours a day.

Since then, my health has declined. Even after eight hours of sleep on my “off duty” nights, I feel like I haven’t slept in days. The nerve pain and twitching came back, and there were a couple of days where I couldn’t keep up with household stuff, and I spent the day curled up on the couch with the Pack and Play set up next to me so I could easily hold, change, and feed the baby when necessary. That said, so far, even my worst days aren’t as bad as my final weeks of pregnancy, so I consider this a major improvement.

My new life hasn’t been overwhelming to the point where I can’t handle it, though I admit there have been a few sob-filled “Come hoooome, I can’t dooooo thiiiiis!” phone calls to the husband if the baby is extra fussy on one of my sick days.

I’m not going to lie. This is hard. You have a baby, and all of a sudden it’s not all about you anymore. Feeling terrible? Too bad--your baby needs you, and you can’t just pull the covers over your head for the day and sleep the pain away.

It definitely takes some getting used to, and I have the feeling my LLMD would want to kick me if I told him that I’m compromising my health by overdoing it, but I can honestly say that I am amazed at the strength I find in motherhood. I’ll even say that being a mom is helping in my recovery.

A month ago I was a lump on the couch. If I didn’t feel well, I could zone out to bad T.V., let the dishes pile up, feel sorry for myself and essentially “give up” for the day.

Yes, this is the world’s biggest cliche, but it’s true: I have a purpose now, and I have a full time job without the option of quitting. (FYI, a baby is even more demanding than the worst boss you’ve ever had.)

Now I’m out and about buying baby supplies. I “exercise” by holding 8+ pounds all day, walking the little guy around the house, and taking out the craptastic garbage bags full of diapers. I have to be upright--there are bottles to wash and make, there’s baby laundry to do and fold, “accidents” to clean up. There’s no time to let aches and pains stop you, and you end up just pushing right through it.

Personally, I feel like all of this pushing is a positive. I have a reason to get better, and my confidence grows each time I challenge myself to keep going and I prove that I can provide for my son.

I swear, once you give birth, you unlock this magical reserve of energy you didn’t know you had. I’m assuming the physical ups and downs will continue. In the meantime, I’ll continue my new drugs (back on all supplements, thyroid pills, and Minocycline for now) until I see my LLMD in two weeks to discuss the future. We’re also looking into hiring someone to help out for a few hours a day so I can get more rest in, but I’ll save all that for another post.

10 Things I Learned During Lyme Pregnancy

1. It’s important to find a good OBGYN. And by good, I don’t necessarily mean Lyme literate. As long as he or she is Lyme “friendly,” (open to listening and learning about the disease), and are able to communicate with your LLMD, you’re in good shape. We went through three different doctors before we found a match for us.

2. Just because a doctor is Lyme literate, it doesn’t mean he or she will be a good fit for your family. I was lucky enough to find a Lyme literate OBGYN relatively close to home, which I’ve heard was impossible*. He turned out to be an evil monster and caused an immeasurable amount of stress and tears. Go with your gut instinct and stick with someone that makes you feel comfortable.
*LLOBGYN recommended by my LLMD. I’m not sure where else you’d go to find one.

3. There’s no need to panic. Yes, you have Lyme. Yes, it can be transmitted congenitally. No, your baby probably won’t get it if you’ve been treated in the past, and especially if you are being treated now. The internet can be a dangerous thing. The truth is, you’re not going to read many scientific based articles and statistics on Lyme pregnancy, because there simply aren’t many out there and it’s hard to weed through the junk to find good sources. Proper treatment is crucial, but pregnancy doesn’t have to mean automatic Lyme transmission.

4. Along the same line, many moms being treated for Lyme have healthy babies, but they aren’t online writing about how wonderful their lives are. Sadly, people write about health issues only when there are, well, issues. I’m in no way undermining those who have had to live with with congenital Lyme. It’s serious, it’s scary, and my heart hurts for those who have to care for sick babies. (I appreciate this even more now that I have my own baby, as I get upset when Wyatt has something as benign as diaper rash.) Just remember that there are more healthy Lyme pregnancies than you might think. We just don’t often hear the success stories.

5. Be optimistic, but expect the worst. Lyme symptoms suck. Pregnancy symptoms suck. You might experience both at once, and that is double suck. I’ve heard that some women’s Lyme symptoms disappear during pregnancy due to an increase in hormones. This wasn’t the case for me, but I hope it is for you! Just know that it might be uncomfortable, and downright tear inducing at times, but you will get through it. I would not lie to you, the second you see your baby for the first time, you won’t care about those past nine months. I wish I had more words to explain that beautiful moment. Bottom line is that it’s all worth it.

6. Don’t be afraid to say, “I can’t do it.” By the time I realized that I needed to throw in the towel, actually let my husband and family help around the house, and just submit to the T.V. or writing, or internet surfing, I was in my third trimester. And the only reason I settled down was because my feet swelled up to elephant man proportions, I was too big to really move around, and my tics set in big time. I have promised myself that when I’m pregnant again (yes, there will be another!) I will allow myself to take it EXTRA easy from day one.

7. Diet is important. I learned this by eating healthy foods in the beginning and then giving in to sugary cravings later on in pregnancy. When I was eating my super healthy Lyme friendly diet (no sugar, bread, or fruit), my symptoms were mild. When I indulged in my Pop Tart and Ring Ding cravings (gross I know--I don’t even normally like that stuff!) my health declined rapidly. Again, next pregnancy I will try hard to not give in to the sugar. I believe it makes all the difference.

8. Pregnancy = a nine month waiting period for hard treatment. Regardless of how crappy you’re feeling, most doctors will take the less is more approach when treating during pregnancy. This is for obvious reasons--there aren’t many pregnancy-safe drugs out there, and most people want to stay as chemical free as possible, as everything we take goes to the baby as well. Plus, doctors want to cover their butts. If anything happens to that baby during treatment, they don’t want to be blamed for it. The key word is maintenance during this period. After you have your baby, you can treat aggressively again.

9. You are your own advocate, and even more so, you are your baby’s. Don’t be afraid to call your doctor with any questions or concerns. At first I was timid and felt bad for bothering the office staff. After the first couple of months I realized that if I wanted any help or answers, I had to be assertive. Don’t be afraid to ask questions and demand answers if you’re not getting them. If you get resistance from anyone, switch doctors--there are countless others out there, and many are actually in the business to help.

10. It all goes by faster than you think. I swear. Before you know it, you’ll have a little one in your arms, and for a brief moment, you’ll be so happy that you won’t even remember Lyme exists.

Labor Day

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.

Wyatt Has Arrived...

Happy, healthy, and a whopping 7lbs 11oz at only 36 weeks!

Details coming real soon, but for now, I am proud to introduce our little fighter, Wyatt Robert.

D-Day Tomorrow?

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?