Sunday, January 5, 2014

The Breastfeeding Battle

There was never any question in my mind whether I was going to breastfeed my child or not. I only knew that there was a good chance that my breastfeeding would be cut short when I needed to go back on my meds. So I had a plan in place - breastfeed as long as I could, and pump, pump, pump to build a stash so that my baby could have extended benefits. So I got my free breast pump through my insurance, got supplies, and was all ready for baby.


Life never presents us with what we expect. After this saga, a woman I work with said something that stuck with me - something always goes wrong when we have a baby - either it's a hard pregnancy, or a tough labor, or feeding the baby is an adventure.

Well, I fell into category number 3.

Apparently, my little girl did not have a good suck, despite living on my breast for hours at a time and she constantly fell asleep while nursing.  After a few trips to the pediatrician, we had to start supplementing with formula. I made a bottle - and then immediately put it back in the fridge for my husband to give to her. I felt like a failure. It took her a little over 3 weeks to gain back the 12oz she lost at birth (most babies take 2).

I started regularly attending a breastfeeding support group at the hospital. It was there we figured out that she was only getting about an ounce and a half of breastmilk after nursing for an hour and a half. Her lack of suck had killed my supply. Breastmilk is produced on a supply and demand basis - she wasn't sucking enough, and so I wasn't producing enough. For the record, I am well-endowed (I had to go to a specialty shop to get my nursing bras), and I think that may have had a little to do with it as well. Big boobs do not equal lots of milk. If anything, I think milk likes to get trapped in mine easier than it does in someone with smaller boobs. Anyway.

The lactation consultant in the group suggest renting a hospital grade pump, and following the odious schedule of feed (15 min per side) supplement (with breastmilk/formula) and pump 15 min. Every. Time. She. Ate. Every 3 hours we'd start this cycle. I hated every second of triple feeding (as it's called). I did it for 4 weeks. 4 whole weeks. I'd have to listen to Kaley cry while pumping, otherwise, it wouldn't get done. And I was determined to get rid of the formula supplement.

After 4 weeks, I went to the support group and was down to about 2oz of formula a day (from about 8-10). However, she only gained about 2 oz that week (Babies should gain about 0.5 - 1 oz per day - I have since figure out that my little peanut gains on average .5 oz a day, at the very bottom of the curve). I was discouraged. However, when she ate, she was now eating over 3 oz in a half an hour nursing session, so we had made significant progress on that front. Then Life decided to throw a wrench in the system and my ankle gave out while I was walking down the stairs that afternoon, and I sprained my ankle.

I couldn't walk for 2 days. I had to take care of my 8 week old baby in my bedroom for two days. Pumping was not an option. So, for those two days, we spent the time in bed. And I realized that because I didn't have to pump, and I wasn't constantly looking at the clock, hoping I could get my pumping session in, we actually had fun together. She was just beginning to smile and play with toys (although at that point I was her favorite "toy"), and I was missing it because I had to ignore her while pumping.

I only pumped a few more times in the evenings, and then finally put my pump away and never looked back.

She still only gets about 10-12oz of formula a day, which is about 1/3 of her daily food intake. And we have a nice system now - and lots of smiles and laughs.

My biggest fear, though, during that 4 weeks of pumping hell, was that it was all going to be for nothing when I needed my Enbrel. I started taking prednisone at about 5 weeks postpartum. By 3 months, it was doing nothing. I was scared - I couldn't imagine not being able to breastfeed anymore. And I didn't have the stash I had so hoped to build up in the early weeks. But, my lactation consultant saved the day again, and pointed me to We looked up Enbrel and found out because it is such a large molecule, and is biologically unavailable via the digestive tract (the reason it has to be injected), it is a lactation category 2, and is safe for breastfeeding (although, there has been minimal research done and should be taken at the users risk). I took the info to my doc, he did a bit of research himself, and we both decided that it was fine! I've been back on it for 4 weeks, minus one where I caught a cold and had to wait a week to take it again, and it is amazing how good I feel compared to how bad I was feeling before it.

This may have been one the the hardest battles I've fought in my life. Breastfeeding is so very hard for some people, and there is so much pressure and judgement surrounding how your your baby (or parent in general...), but to have the added worry of what my RA would add to the mix, made it that much more difficult for me. However, my mom said to me a few weeks ago, that the one thing this whole thing had taught me was patience - because it requires a ton of patience to do what I did for those 4 weeks.

Tuesday, December 3, 2013

My Birth Story

I think this is one of the greatest stories of my life - I will never tire of telling it. Note - there might be some things that offend and disgust as it is a birth story.

At 39 weeks (it was a Wednesday), I had a doctor's appointment. While sitting in the office, I started having light contractions, nothing too bad, just a bit of tightening. I was checked and was a whole 1cm dilated. Oh well, I went home, the contractions kept up for a bit, but were gone by the time I went to bed.

Thursday, I felt kinda crappy. I had a few contractions during the day - nothing with any regularity - I took a nap. When I woke up, the contractions were more obvious, but still nothing to write home about. I went to bed.

Friday morning I woke up to stronger, more regular contractions at 5am. I got out of bed, and sat on the couch timing them. Once I reach the 1 minute contractions, 5 minutes apart, for 1 hour, my husband was out of bed and I called L&D. They told me that I could come in whenever, especially since they weren't that strong. I took a shower, but unfortunately they started to disappear after my shower. I still went to the hospital though, found out I had dilated up to 1.5cm (woo....). They kept me on a monitor for about an hour and my doc came in an did a non-stress test, including ultrasound which made me so happy since we hadn't had one since 18 weeks. After that, they sent me home, but my doctor was pretty sure I was going to deliver over the weekend.

During the time in the hospital, I had called my mom and she and my dad had gotten out of work and began driving the 5 hours it takes to get here. They decided to continue coming as they had about 12 days off from that point, so they figured I would deliver sometime in that window. Having my mom at the house before the baby was born was one of the greatest ideas ever, as she cleaned my house from top to bottom so I wouldn't have to worry about it once the baby was here.

Over the weekend I would have these sporadic bouts of contractions and they were getting more and more painful, but the minute I laid down, they would go away. I began researching online and found out I was in prodromal labor. What I was reading was both bad and good. Bad: Prodromal labor can last for WEEKS. Luckily, I was in week 39, so I figured it couldn't go on for too long. Good: Most people who have prodromal labor have very quick transitions and births. I spent the weekend walking with my mom and my husband - we hit up a bunch of malls in the area and walked the neighborhood a bunch too.

On Wednesday, I had another doctor's appointment. The nurse called me up and said "You are not supposed to be here - you were supposed to have had that baby by now!" Yeah, I KNOW! Granted I was at 40 weeks at this point, so there was no issue having gone this long at all. I was checked and was happy to hear that I had dilated to 3cm over the week. The doc decided to strip my membranes (ow) and hoped that would get things moving along. My mom came to the appointment with me and she got to hear the heartbeat for the first time - it was awesome. Just in case, my doctor scheduled an induction for the following Tuesday if I managed to go that long. I was so hoping that would not be the case.

Wednesday evening we went walking again, but had to cut it short because the contractions were getting stronger, however they weren't regular at all - I was having them between 2-10 mins. It was annoying. At this point, I had gotten it in my head that the contractions would go away - which of course they did when we got home and I sat down. I relaxed for a bit, and then right before I planned on going to bed, my right arm fell asleep. And I mean fell asleep, to the point of shaking my arm to get blood flowing back into it. I got the feeling back and went to bed. About an hour later around midnight, however, I wake up to my arm being asleep again, but with the worst pain in my arm as well (it was so odd for it to be numb and in pain). I spent 20 minutes trying to get the feeling back but I couldn't. I woke my husband and my parents up in hysterics (I was thinking worst case scenario - blood clot, etc.). My husband calls L&D, and they instruct me that I should go to the ER as it is a medical issue. They did ask if I had felt the baby moving, which I hadn't for two reasons. One, I wasn't really paying much attention and two, the baby was always quiet at night. So they say they will send someone down to check once I get there.

We get to the ER. The nurses are surprised when L&D tells them to keep me (as most people at 40 weeks go straight up). An L&D nurse comes in, checks for the heartbeat, all is well with the baby. My arm had started feeling better at this point, and I get diagnosed with carpal tunnel and the resident makes the worst splint in the history of splints. It was so bad a nurse came in after the fact and gave me a wrist brace and said just put this on when you get home. So we leave - it's about 3am. As we are walking out, the contractions start again, but I thought nothing of it, as they've been doing this for days.

However, by the time we get home, the contractions are much stronger. I couldn't even lay in bed because I was in so much pain - I didn't want to keep my husband up because he had to work in the morning. I went out into the living room and sat with my mom and timed them. I offhandedly mentioned that these ones felt different (much lower in my abdomen) and reminded me of the contractions I had prior to the miscarriage. It was at that point that my mom knew I was in active labor, but she didn't mention it to me. I had a feeling, but I wanted to let my husband sleep some more. By 4:30, they are unbearable and my mom says that we need to go. I wake my husband up, who later tells me he was pissed because he thought it was going to be another false alarm.

We get to hospital by 5am. I walk up to the ER window and the nurses are confused to see me again, but I explain that now I am in labor. There was another couple waiting to head up for a C-section, so we all went up together. I had to stop a couple of times to let the contractions pass, and the other guy we were walking with mentions to his wife "Aren't you glad you don't have to go through that?" I would have punched him if I could. We get upstairs and the other couple gets whisked away. A nurse comes up to me and says "Mrs. Miceli? You aren't supposed to be up here - you have a medical issue." The ER nurse that escorted us up says "No, she already went home for the other issue. She's in labor now, so she's staying up here." All the while, I'm having monster contractions in the hallway. Turns out, they didn't have a room ready (it was a busy week for babies) and the put me in a little triage room for a bit. I get hooked up to a monitor and checked by a nurse. Lo and behold, I am at least 6cm and in active labor! At that point, they begin to rush around, making me sign consent forms with my braced hand (my husband is literally sitting next to me - he can sign it all...). They ask me what I want to do about pain management and I consent to drugs. My mom says to me "If you are already 6cm, you've gone through most of the worst, you probably won't need the epidural." I say "I still want it available if needed!"

A room was finally made available about 6am and they move me down there. The doctor on call tells me that my doctor will be in at 7am, so if I wait (yeah, right) he will be in to deliver, but she was there if I went earlier. At this point, it was a flurry of activity and all I vaguely remember was that the pain was changing and I couldn't get comfortable at all. And I really wanted to push. So the nurse checks me again and I am at 10cm and the amniotic sac is bulging. They decide to break my water to make sure I am actually at 10cm. I was. And so at about 6:30am I start pushing. I was exhausted at this point, because I hadn't slept since the night before. My mom and husband were there telling me that I'm doing great and that I'm almost there, but I accused them of lying to me to make me feel better. I can only get about 1 and a half good pushes out per contraction, but it apparently didn't matter too much because at 6:53am, with no drugs or interventions, my baby girl was born!

My husband had already decided that he did not want to cut the cord, so they asked my mom if she wanted to. She declined at first, but at the nurse's insistence, she ended up cutting it. I'm pretty sure that just capped off one of the most amazing experiences of her life. She got put on my chest for skin to skin as the on call doc delivers the afterbirth. My doctor walks in as this is happening. My husband, the smartass that he is, says "Nice of you to show up!' My doctor, who has the greatest bedside manner in history responds "Bite me!" I get stitched up (2nd degree tear) and start to attempt to breastfeed my little girl. My mom calls my dad to come to the hospital (he was shocked when she said it's a girl, since we had just left not 3 hours before). He comes to my room and the nurse is kind of shocked that I would allow my dad in while breastfeeding (seriously, at this point, there is no modesty...). He and my mom stay for a little bit, but leave to let me and my husband bond with our little one.

Unfortunately, Kaley was a little cool and needed to be sent to the nursery for some incubator time to get her temperature up. At the same time, this was a good thing because my husband could go get some breakfast (I got a tray while I was breastfeeding) and I could get a shower and get cleaned up. He came back as our room was ready and I walked down the hall of my own accord (no wheelchairs for me!). On the way we got to hit the button that played a lullaby in the hospital so that everyone knew a baby had been born, and I high fived my doctor as I passed him. We got settled into our room, and I sent my husband down to the nursery to find out when she could come to our room. A few minutes later, he walks into the room pushing the cart and there she was - just so very beautiful and ours to enjoy.

Thursday, November 21, 2013

Reviving the dead blog...

Okay - this time I mean it. I want to revive this blog. There needs to be more stories of people my age (gonna be 30 next year!) who live with RA everyday!

So, what's happened since October of last year? I got pregnant and had a beautiful baby girl who is now 3 months old! I do wish that I had kept this blog going during my pregnancy - but looking back, my RA did go into semi-remission.

 After my last post, I pretty much 'gave up" on actively trying to conceive. I remember going to the store to buy the first pregnancy and ovulation tests after my miscarriage, and I just couldn't do it. So I figured the month of November was going to be a wash. My RA was acting up, I was taking prednisone tapers every 2.5 weeks. I literally had sex with my husband twice during the month of November - both times around ovulation, but not really on purpose.. The only thing I did do on purpose was to time a prednisone taper with ovulation - apparently RA can cause inflammation in the uterus, causing the embryo not to implant. People who use IVF are actually prescribed prednisone to reduce inflammation to increase their chances of implantation (inflammation occurs due to the procedure in their case). So I figured, what the hell? What could it hurt? A couple of weeks later, I was working from home and realized that I had been due for my period a few days before. This, however, was nothing new for me, considering that my cycle lasts anywhere from 26-39 days without being regulated with birth control. I decided to go out and buy a pregnancy test within minutes. I remember walking into my house with the bag in hand thinking to myself "I don't know if anyone out there is listening, but I could really use some good news right now." (Note: Neither I, nor my husband, are particularly religious). I took the test, and got my good news. I called my husband at work crying and laughing. I got to tell my parents that night because they were on their way for a visit - I couldn't have been more happy or more scared.

My doctor decided to get me in for an ultrasound early this time around (as we found out about the last mc at an ultrasound at 10 weeks). I remember sitting in the waiting room of the ultrasound office freaking out - it was early (like 6-7 weeks) and I knew I couldn't handle another let down. We go in - and there it was! We go to see the flickering heartbeat of our little baby.

My first trimester was a breeze  - other than the nausea (and the fact that I couldn't eat vegetables...). My RA came back in my second trimester, but I was teaching 5 classes, taking 3, and was 4-6 months pregnant. I was prescribed prednisone by my doc to take as needed (in 9 day tapers). We had our anatomy ultrasound at 18 weeks and saw my little Spawn (this was my pet name for the baby, as we decided to keep the sex a secret). My third trimester was spent at home, because it was summertime, and my RA went away again, although I had the worst sciatica ever.

On August 15th, my beautiful baby girl, Kaley, was born, after 7 days of early (prodromal) labor, 1 false alarm trip to the hospital, lots of walking, a trip to the ER for sudden onset carpal tunnel literally hours before she was born, 4 hours of active labor, and 25 minutes of pushing...I'll have to tell that story in the next post.


Tuesday, October 16, 2012

Awareness Week....

Last Friday, October 12th, was World Arthritis Day...and I forgot about it until later in the day, after I taught my classes. Despite that, I posted a few things on Facebook about it, got a bunch of virtual hugs from my friends, and I know that I've educated at least some people I know since being diagnosed about rheumatoid arthritis. I also talk about it quite a bit in the microbiology class I'm teaching, considering some of the pathogen we discuss are possible triggers to arthritis, and taking some of my drugs (when I'm on them), classifies me as immune-compromised, so pathogens that may not affect them, can have adverse effects on me. It was all just in time for a  flare to throw my weekend off.

Monday, October 15th, was Pregnancy and Infant Loss Awareness Day. I didn't do anything for it, because many people I know still don't know about the miscarriage. It's still hard to get over, especially now that we are trying again, and every month turns into a waiting game. There's a small part of me that doesn't want to chance getting pregnant again and have to live through something like that again. I have the best support system of family and friends in the world, but I've never felt as broken as I did in the days following that ultrasound. I can't imagine going through it again. And I know that the benefits far outweigh the risks, because I know several people who have gone on and had healthy, happy families after losses like mine. But it still hurts. I have friends moving on with their lives - getting engaged, getting pregnant, having babies - and sometimes I just feel like we're just sitting here, stagnating, waiting for our lives to move on. I try so very hard to live in the moment, but between work and school, sometimes I wake up an wonder where the time has gone. It's been almost four months since I lost the baby, and yet sometimes it feels like it was just yesterday that I was walking through Target with my mom and she was buying a set of hooded towels, the first items bought, for my baby. A third of the year has passed and I feel like not much has changed since then, although my relationship with Dan has become stronger than it ever has been. If there is one good thing to take away from all of this, it's that I love my husband more than anyone on this planet, and between the two of us, we can make it through anything. I recognize that I am mildly depressed, but I find myself looking forward a little more each day. I'm developing stronger friendships with people that I've known for years and some of whom I've only known for a short time. And I am thankful for everything good that I have in my life.

Sunday, September 9, 2012


I took one shot of Enbrel, and then made the conscious decision not to go back on it.

There is a part of me that believes that because I was taking my Enbrel for at least 2 weeks while pregnant, that I may have compromised my immune system so much that I contracted an infection that made me so sick, my body had to choose between getting better or protecting the embryo - which ultimately led to the miscarriage.

So I've been off all my meds since I took the shot at the end of July. And I'm paying for it - so much so that prednisone isn't really helping all that much. I just went back to work this past week (I'm a science professor) and started my own doctoral classes back up, and I can feel the RA creeping into my back and neck, where it has never bothered me before.

And what worries me the most is that by not managing my disease, I'm just setting myself up to have problems conceiving again - it took us 9 months the first time, mostly because I was taking an NSAID that was messing with my ovulation. But my doctor has pointed out that some people have issues if their RA is not managed - which at the moment, mine is not. And who really wants to have sex when in this much pain?

My mother taught me that life is not fair, but this just plain sucks. Is it so much to ask for this one thing? We've waited "so long" to be in a place where we felt comfortable bringing a child into this world, and now I have to work so hard for it.

Monday, July 30, 2012

Well, the NY Resolution worked so well...

I'm back, mostly because I need a chance to vent. I'm in the middle of a flare, and I couldn't be more depressed about it if I tried.

I've been off the Enbrel for three months. I stopped because I got pregnant. I hadn't felt as good as I did since being diagnosed. It was wonderful.

Then, we went for a 10 weeks ultrasound to find out the embryo stopped growing at 5 weeks 6 days. I miscarried (involving a stressful trip to the ER) three days later.

That was a month ago yesterday. Yesterday, I gave myself my first Enbrel shot in three months. I'm in so much more pain than I've gotten used to.

It's just not fair sometimes.

Friday, January 6, 2012

NY Resolution: Try to blog more

I figure since I haven't been on the blog since October, I might as well update, although things seem to be going very well when it comes to my RA. The Enbrel has been working wonders - I finished my first term as a doctoral student while working my butt off and really haven't been feeling too bad. Although right before the holidays, I caught a cold and it eventually required antibiotics and a week of skipping my Enbrel to get through it. In the meantime, I lost my voice, which for a teacher is the worst thing possible. 

Also in the middle of that, I had a doctor's appointment (which was good because I needed the antibiotics anyway...). During the appointment, I had another ultrasound of my right hand - the knuckle at the base of the middle finger is the one joint that won't respond to any of my drugs. It was looking better, but during the ultrasound, there was still a significant amount of fluid in the sinovial sac, and it also looked like there was some bone erosion going on (not good). My doc prescribed more steroids, but between the missing Enbrel and the antibiotics that week, they did nothing. So today, I got my very first cortisone injection! I also got to be the guinea pig for two fellows working in the office. They were both very nice, and very interested in my case. One of them actually performed the injection (My joint was apparently an easy one seeing as there was already a lot of fluid in the joint). It was the oddest feeling though: as she injected the steroid into the joint (I could see it on the ultrasound), it felt like someone was slowly (and painfully) pulling my middle finger back. My doctor explained that that feeling was normal because we were injecting fluid into a fluid filled sac that was already filled with too much fluid. So now, I'm typing this with a semi-tender hand (I don't know if the local anesthetic has worn off yet or not) and hoping that this may be just the thing needed to stop damage to that finger - I kinda need my right hand to do stuff, like write!