Showing posts with label rh sensitization. Show all posts
Showing posts with label rh sensitization. Show all posts

Monday, June 12, 2017

An Rh Sensitized Pregnancy: Aftermath (Part 5)

At the end of it all, after all my worries about induction and further transfusions, my baby was born normally. Naturally. Spontaneously. (Well, mostly. I did have a membrane sweep.)

And four days prematurely.

After my son's birth, he spent some time with me, then was ultimately taken to the NICU. He was more or less fine at birth--clearly not anemic, no signs of shock, dealing great with the transition to being in the outside world. But because of my Rh sensitization, he would need monitoring for awhile.


Much of the next few days was a blur. I was recovering from birth, but despite my exhaustion, I barely slept that first night. Even without my baby in my arms, I was feeling the birth high! I eventually slept, but roused myself to use the breast pump every three hours or so. (I was determined to breastfeed! And determined that my baby would not drink a single drop of formula.) I visited the NICU frequently to see my little guy, and tried to nurse every time I was there.I slept as I could, and while I was sore, I never really needed pain medication of any kind.

I stayed in the hospital for two days, eating mediocre hospital food (although they get bonus points for having vegan options beyond side dishes!) and pumping and shuffling back and forth from the NICU to my lonely little room.

Coconut Baby, meanwhile, was in the NICU. Initial tests had shown his red blood cell count to be within the normal range, so he was definitely not anemic. His blood sugar was fine, although that'd be monitored for awhile due to my gestational diabetes diagnosis. Baby did, however, have an unknown quantity of my antibodies floating around in his system, and they were breaking down his cells at a faster than normal rate. The result? Jaundice. Baby's bilirubin count was very elevated, and still going up. At some point when I arrived for a visit in the NICU, he had been put on phototherapy, with two big sets of bili lights shining on him from above and a lighted blanket down underneath.

He had blood tests twice a day, to monitor his bilirubin level and RBC, as well as his blood sugar. He had to wear a little mask to protect his eyes from the phototherapy lights. He had an umbilical IV and a feeding tube, although for the first few days they switched him to IV nutrients (as opposed to my milk; instead, I steadily built up a stash of pumped liquid gold in the NICU fridge). He was so tiny, and there were so many wires attached to him, although I recognize that many NICU babies fared far worse. He was very sleepy, from the combination of being newborn, slightly premature, and jaundiced, but aside from that, he was doing well. Breathing fine, no temperature problems, no heart issues. I was barely allowed to hold him; he needed to stay under the lights.


I only got to spend two nights in the hospital, and after that I was forced to spend the better part of every day away from my new little squish. Although I tried to take the opportunity to enjoy being with my older boy, my heart felt torn in half. I continued pumping every three hours, and every day when I visited the NICU I brought all the milk I had made. Baby kept getting blood tests, kept receiving phototherapy. I tried to nurse when I was there, and he received my milk in bottles when I was at home. His bilirubin remained high, and the doctors warned us were were edging toward baby needing a transfusion after all. But instead of just giving him blood--he wasn't anemic, after all--they'd be doing an exchange transfusion. Essentially, the idea would be to swap out most or all of his blood for fresh blood, blood that didn't contain my antibodies.

It was a terrifying prospect.

Instead, we authorized the doctors to give him a dose of IVIg (intravenous immunoglobulin), which would help protect Coconut's red blood cells from my antibodies; this, in essence, would slow the breakdown of the excess cells, hopefully either lowering his bilirubin count or at least leveling it out for awhile so his body could have time to catch up with the load.We were told that IVIg is normally not particularly effective in cases of Rh disease, but that it was certainly worth a try. Anything to try to avoid an exchange transfusion.

Thankfully, it worked. Coconut's bilirubin dropped dramatically after he received the course of IVIg. He still had to stay on phototherapy, but they were able to remove one of the banks of lights. A few days later, we authorized a second dose of IVIg, which further helped his body get on top of things.

Finally, after eleven days in the NICU, Coconut was allowed to come home with us. The monitoring wasn't over just yet, though. He needed a blood test three days later, and then another four days after that. We continued doing weekly blood tests for weeks, monitoring his bilirubin (to ensure it kept dropping), his red blood cell count (to ensure it didn't drop), and his reticulocyte level (which was an indication of how quickly his body was producing new red blood cells). Those days were the worst part of Coconut's week; he hated the heel pricks (who could blame him?), not to mention getting his blood pressure checked and all of his other vitals taken.


Finally, though, when he was approximately six weeks old, the doctors released him. Officially. Bilirubin was nice and low, indicating that his body was able to handle it on its own. Red blood cell count was up, indicating that my antibodies were leaving his system. Reticulocyte count was way up, indicating that his body was finally making plenty of new red blood cells.

Six weeks after birth, my baby was finally free of the effects of my Rh sensitization.

In the end, I feel like I was really quite prepared for the issues I encountered during the pregnancy itself, although the reality of the blood transfusions was far more intense than I had thought they would be. Where I felt unprepared was when it came to the aftermath. No one had really warned me of the issues we'd be dealing with after birth; I had naively believed that once baby was born, he might need a transfusion if he was anemic but that would be that. I hadn't realized that jaundice was a major concern. No one told me my antibodies could linger in his system for up to three or four months. I was unprepared for the frequent, heartwrenching blood tests, or the reality of having a NICU baby.


We got through it, though. It was so much harder than I expected, but it was quite worth it in the end. Of course! Being Rh sensitized made for, quite frankly, a pretty awful pregnancy and birth experience. Thank goodness for the modern medical procedures that enabled this baby to come into the world and into my arms.

***

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Sunday, April 30, 2017

The Birth of Coconut Baby

When I was just past the 36 week mark, I saw my doctor for my final prenatal appointment.

Of course, I didn't know at the time that it was going to be the last one!


As has been par for the course in this pregnancy, I had an ultrasound first. Well, technically I had a biophysical profile, since it was followed up with a nonstress test. I wasn't expecting that, but as with so many things this pregnancy, I didn't question the necessity. I was high risk and in my final month, after all; if my doctor thought a nonstress test was needed, then I was just going to go with it. Besides, I'd already spent so many hours on the fetal monitors that twenty more minutes didn't even faze me.

Unfortunately, this particular ultrasound was not reassuring. Despite the fact that it'd been only about two weeks since my baby's last blood transfusion--a big one, and which we were hoping would indeed be the last intrauterine transfusion--baby's MCA reading (the measurement of how fast the blood was flowing in one of the arteries in the brain, which can be an marker for fetal anemia) was showing high. Not dangerously high, but much higher than my doctor wanted to see, especially so soon after a transfusion.

We did the rest of my appointment, and my doctor asked me to come back again on Friday for a follow-up ultrasound. We had already scheduled an induction for a few weeks away, aiming to get baby out around the 38/39 week mark (which is when they estimated another transfusion would be necessary), but my doctor warned me that the high MCA reading meant we'd be moving the induction forward by at least a week. Depending on how the ultrasound looked on Friday, we might need to induce that very day.

This obviously was not what any of us wanted, but I know how bad anemia can be for a baby, so I readily agreed. We'd hope for the best on Friday, and plan for induction the following week. I told my husband and he told his job, and we all planned as best we could.

I then asked my doctor if we could sweep my membranes at my next regular appointment. In case you've never heard the term before, a membrane sweep involves a doctor (or midwife) doing a cervical exam, and then if conditions look favorable (meaning, a certain amount of dilation has already occurred and the cervix is already somewhat effaced), gently lifting the amniotic sac away from the cervix. If the body is close to being ready to go into labor, this can sometimes kick things into gear. At the very least, we were hoping to encourage my body to keep making the hormones that would continue to thin my cervix out so that induction would be more likely to be successful.

My doctor agreed that it sounded like a good idea. "I can sweep them today if you want," she offered. And so she did.

Neither of us expected it to actually work, though!

The sweep itself didn't hurt at all, which I was a bit worried about. It was uncomfortable, sure; cervical exams always are. But it didn't hurt. Before I left her office, my doctor warned me that I might experience some spotting, and that some crampy feelings were normal after a sweep. So I didn't think anything of it when I did indeed find a bit of bloody discharge, or when I noticed cramps during my middle-of-the-night bathroom runs. It felt like menstrual cramps, exactly what I was expecting based on what I'd read.

The cramps did get a little worse as the night progressed, but they were nowhere close to bad. Certainly not anything I couldn't sleep through. They didn't feel like labor contractions. It was just the sweep, that's all.

Sometime the next morning, they did start feeling a bit more like contractions. Similar to my first birth, I at first assumed that I was finally feeling the Braxton Hicks contractions. After all, I had been having them for weeks. Regularly. They had caused problems leading up to the last cordocentesis and transfusion, after all; they'd been so regular that the doctors had put me on magnesium sulfate to try to slow them down (but to no avail). So surely that's all these contractions were. I was finally starting to feel them.

...Or maybe it was early labor?

A few hours later, I lost part of my mucous plug. It was at that point that I started to take things seriously.

My contractions started to get a little more uncomfortable. Still nothing I couldn't function through. I took my older child to swim class, where I found myself swaying my hips through the contractions. I was still able to drive, but sitting still was getting a bit uncomfortable.

I downloaded a contraction timer app to my phone. Bug and I went home to have lunch, and the contractions were getting worse. When I finally started timing them, I found they were coming every 4-6 minutes, and were about 30 seconds long.

The husband and I scrapped our plans for doing some baby gear shopping at Target. We went out for an early dinner of Thai food (spicy!), but my appetite was already starting to fade, and I ate barely any. I debated calling labor & delivery for advice, but my contractions were getting longer and stronger. I opted instead to just head straight to the hospital.

The drive to the hospital sucked. There was traffic, and instead of 20 minutes we were in the car for at least 45. I couldn't lean back in my seat. But sitting up straight and leaning forward (as much as one can lean forward with a big belly, anyway) were uncomfortable, too. I kept timing the contractions, and they continued at about the same pace, although they were 45-60 seconds long at this point. Every time one hit, I did my best to wiggle as I could, trying to work through them, but that's hard when you're strapped into a car! I found myself thinking fondly of my son's birth, which took place at home. Why would anyone choose to drive to the hospital while already in labor?!? I knew the nature of my pregnancy meant that a hospital was the best place for me and baby--whom we had been calling Coconut--but I couldn't help but be a little wistful for the idea of another home birth.

When we got to the hospital, I was checked in and shown to a room. I changed from my pants into a loose sarong; no hospital gown for me! They put me on the monitors and I waited for someone to come check my progress. I had put into my birth plan that I wanted to minimize cervical checks, but I was okay with a few of them (emphasizing that consent was required!). When the doctor finally came in, I was a bit disappointed to find I was only at a 5. I had already been at 3 the day before, when the membrane sweep occurred. And I'd been having contractions for hours already! The rational, birth-obsessed part of my brain tried to counsel me about the dangers of putting too much stock in exams--your cervix is not a crystal ball, after all, and just because the progress seemed slow didn't necessarily mean that I'd be in labor for days. Those contractions were working, and they were likely helping baby get into a good position and doing other things not readily apparent by the surface numbers. I was definitely in active labor; no doubt about that! Never mind the numbers!

And then further bad news: Coconut was technically coming prematurely (by four whole days), and so the doctors wanted me on the monitors continuously. My room had a nice, deep tub for laboring in, but clearly I wouldn't be using it. I was stuck with bouncing on the yoga ball, moving my hips, and being massaged by the soothing hands of my husband and doula for pain relief.

The nurse put in a heplock, and it was a sign of how far I'd already drifted into the haze of labor that I barely even cried. It took two tries, and I cried a bit for the first attempt and barely even flinched for the second. (For the record, getting an IV always makes me cry.) I just kept doing my thing.

Time passed. I bounced on the ball, tried a few different positions for labor. I couldn't move far because they didn't have wireless monitors, but I ended up ultimately finding my place on the bed, kneeling and leaning against the raised backrest. Husband and doula massaged my lower back as I moaned and swayed through contractions. Husband also fed me ice chips and offered coconut water. I had actually brought snacks to the hospital, intending to eat despite their silly, outdated nil per os rule, but I wasn't hungry at all by that point. I could barely drink and suck on the ice.

As time passed, I started to get exhausted. It was evening, past dinner. I hadn't eaten since lunchtime, and I had no interest in eating. My husband tried in vain to get our son to fall asleep. (Did I mention that he was there? Bug was super interested in being present at the birth, so we ultimately decided to bring him with us!) I continued working through contractions. Time became rather hazy.

The contractions were hard, and I was feeling discouraged. I was starting to feel flushed, but then I was also feeling cold at times, too. (Transition, anyone? The rational part of my brain recognized it, but I didn't say anything aloud because I didn't want to get anyone's hopes up, least of all my own.) I was in pain, and I was so very tired. I started to doubt myself. The contractions seemed nonstop. I couldn't get any real rest in between them, and my limited range of motion made it feel like I wasn't coping well.

I asked for pain meds.

Not an epidural, but something short-acting, just something to take the edge off so I could rest a bit. I wasn't sure I'd have enough energy for pushing if I didn't get some rest.

...And the nurses told me no.

When the nurse came in, it was apparently pretty clear to her that I was past the point of medication. She offered instead to check me, so we could see how far I was.

No one was more surprised than me to hear that I was at a 10!! I was given "permission" to push whenever I wanted. I realized I was feeling a little pushy, but not much, nothing like I remembered with my son's labor/birth. I tried bearing down a bit, but I was just so tired, and it's even harder to push when your body isn't helping you out.

So instead, I opted for an intervention: I gave the nurse the okay to break my water. I had been hoping to let that happen on its own. With my Bug, my water didn't break until literally a split second before I pushed him out. I was secretly hoping that this baby might be born in the caul, since Bug had been so close. But it was not to be. I wanted this baby out, and I wanted him/her out now! Under the circumstances, breaking my waters seemed a small price to pay.

According to my husband, the nurse soon returned with a rather scary-looking tool. I have since described a standard amnio hook to him, and apparently the tool they used at my hospital was not that. Regardless, they broke my water, and I soon felt a gush all over the backs of my legs and feet (I was still kneeling on the bed).

The difference was immediate.

With one of the next contractions, I felt an intense urge to push. And by urge, I mean my body started pushing, and there was absolutely nothing I could do to stop it at that point. My husband says that you could see the difference in the contractions, in how my belly looked once that urge to push set in. I sat up as straight as I could on my knees and pushed! I groaned as I pushed, trying to keep my noises deep and my jaw open and loose.

I pushed for another contraction or two. Apparently, I was making rapid progress, because the nurse asked me if I could try to slow it down a little. I don't remember my exact words, but my response was a resounding no! I guess no one expected baby to come quite so quickly after my waters were broken, and most of my birth "team" (on-call OB, more nurses, NICU pediatricians, etc.) was not yet in the room.

Since there's obviously no way to stop a baby once it's coming, the nurse apparently yanked the "call the nurse" remote out of the wall, which sets off alarms in various parts of the hospital. I was lost in my labor haze, so I didn't notice as the room flooded with people. Another push, and baby's head was out. I immediately felt a sense of relief, but I wasn't done yet. One more strong push, and baby was earthside!

It was 10:28 P.M. No wonder I was so tired!


I fell against the bed in relief, so glad to be done. I don't know who caught him, but my husband got to see him before me, and he quietly announced to me that we had another son! My firstborn, apparently, was standing by, completely enthralled with the process. Someone milked the cord, getting my potentially anemic baby as much of his blood as they could in a short period of time. The cord was cut, and the NICU pediatricians gave him a quick once-over before giving the okay for me to hold him. (Because of my high risk pregnancy, my Rh sensitization, they wanted to make sure he was not visibly anemic or in shock.) Someone helped me to sit down normally, to lean back, and I got to hold my precious new boy in my arms.

Everything was still very hazy at that point. I know I held him for about thirty minutes before someone told me I needed to try to birth the placenta. I think the pediatricians took my Coconut again for a few minutes while the nurses helped me into a squat. A few pushes brought the placenta out, and then I reclined again and greedily reached for my boy.

I gave the okay for someone to give me a small infusion of Pitocin at that point, to ward off any potential excess bleeding. I nursed my littlest boy while my husband and bigger (but still little) boy crowded around.

Other immediate postpartum stuff happened, but I can't remember what all that was or in what order it occurred.. Placenta was examined, and I received the okay to take it home with me (or, rather, to send it home with my husband). My bottom area was examined; I had one small tear, but it was very much a surface tear, not even bleeding. I opted not to suture it. I switched my baby to my other breast and nursed some more. I ultimately allowed the vitamin K shot, even though I had been planning to decline in favor of drops. Coconut Baby got his Apgar score: 9/9. Bug started showing random things to the baby and trying to explain what they were; he was taking his role as big brother seriously right from the start! My doula took a few pictures, and eventually, quietly, bowed out. D bagged up the placenta and put it on ice. I kept nursing, cuddling, absolutely amazed at this new little person I had brought into the world.

Coconut Baby was 6 lbs., 6 oz. He had a full head of hair and the tiniest hands and feet.

After an hour or so, the NICU pediatricians unfortunately had to take my baby away. He wasn't in immediate danger from my anti-Rh antibodies, but he did need to have some lab work done, along with frequent monitoring, and his temperature was a little low despite being skin-to-skin with mommy.

The room slowly cleared out. D took Bug home (it was after midnight by this point), Coconut was in the NICU, and the nurses cleaned me up a bit and arranged to move me to a recovery room. My arms were painfully empty, and the birth haze had lifted enough to remind me just how exhausted I was. Still, I was wired, and I sent out some text messages and called the moms to announce the good news.

It had been a hard birth, much harder than I remember Bug's birth being. But I did it, and despite the circumstances--being stuck in a hospital, tethered to the fetal monitors, high risk pregnancy turned late preterm birth--the birth was pretty much everything I could have hoped for. Very few interventions, and those that did occur were with my full consent. Natural, medication-free vaginal birth. Almost immediate skin-to-skin, and nursing in the delivery room.

Beautiful, perfect baby. My rainbow after two losses and a high-risk pregnancy. Bliss.

Thursday, April 13, 2017

An Rh Sensitized Pregnancy (Part 4)

Just the other day, my baby received what will hopefully be her/his final blood transfusion before birth.

So. Worn. Out.

By now, you'd think I'd be an old hand at this. This was transfusion number three, after all. Five days after another procedure day, although that one was just a cordocentesis. Just. I swear, I could draw constellations on my belly and arms from all the needle marks right now. My poor arms, in particular, seem to finally be getting visibly tired of being pincushions; the blood draws from both of these most recent procedures have left bruises, and that's unusual for me. Bruises that are still faintly visible a week later. Normally, I handle blood draws like a champ. I've had a lot of them this pregnancy, after all.

Each one of these procedures is an all-day affair, with me arriving early for my ultrasound and blood draw #1 (there are always at least 2 blood draws, and 3 this time around), then spending hours waiting for the actual transfusion procedure. The wait usually has more to do with the blood bank than anything; when providing blood for an intrauterine transfusion, blood for a baby still in the womb, they do their homework and make sure the blood is the best possible match, the purest and cleanest available. Most days, as a result, the transfusion doesn't happen until after lunch.

In the meantime, I get to have an IV inserted (honestly, one of the worst parts; I cry every time) and spend some time on the fetal monitors. When I'm lucky, I only get monitored for 20 minutes. The last few appointments, I've been apparently having hardcore Braxton Hicks contractions. As in, very frequent, apparently pretty intense, although I have yet to actually feel a single one. Consequently, I've had the non-pleasure of spending hours on the fetal monitors. I've gone through several books, wasted more time scrolling Facebook than I care to admit, and played a ridiculous amount of phone games. All the while stuck in bed (is this what a standard hospital birth feels like?!?), wearing my hospital gowns (I always demand two, one for the front and one for the back), requiring permission for even the simple need to get up and go use the bathroom.

Oh, and because of those contractions, they've put me on magnesium sulfate for an hour or two leading up to the procedure, in the hopes of reducing the duration and frequency of them. Woooo, something else in the IV.

I really, really hate IVs.

Apparently, magnesium sulfate has no effect on me though. Because the contractions didn't stop, or even slow at all. It didn't make me sleepy, or light-headed, or overheated, or physically unstable; the nurses were quite surprised that I was, in fact, still capable of walking to the bathroom on my own (although they insisted someone accompany me). The only side effect I noticed was that my vein up above the IV kind of hurt while the magnesium was going in.

Also because of those contractions, I've had to consent to several cervical exams. They don't hurt so much as they're just awkward and uncomfortable, but I do understand their need to verify that I was not, in fact, in labor. Because I totally wasn't. Yes, I am ever so slightly dilated (good to know? Except I don't care, because cervical exams prior to labor tell me absolutely nothing about when labor will actually start, assuming it gets to start on its own. As the natural birth community reminds me, my cervix is not a crystal ball), but that's absolutely normal for being in my third trimester. I'm only half effaced, and baby is still very high up.

No other real signs of labor, anyway. Baby shows no more reaction to my Braxton Hicks contractions than I do. No decels. No discharge, no fluids leaking. Definitely not in labor, but I consented to the exams anyway. Like a number of other things in a high risk pregnancy like mine, this wasn't worth fighting about. I've got other, more important areas where I need to stand my ground.

And have I mentioned yet in this post that I'm not allowed to eat or drink in the hours leading up to the procedures? Yep, our old friend nil per os rears its ugly head. Sure, I can sneak a bit of water when nobody is looking, but once my water bottle is empty, I'm stuck. Sure, I can sneak a mid-morning snack (and yes, I totally usually do; research shows that aspiration during/after general anesthesia is relatively rare, and rarer still is it actually life-threatening... I'll take my chances, thank you very much), but there's no way I could get away with a full lunch. Even if I wanted to.

Anyway. The procedure itself usually takes about an hour. An hour on the table, being poked in the abdomen with needles. An hour of listening to the medical speak surrounding me. An hour of yoga breathing. An hour of keeping my eyes closed, even though the room is kept relatively dim so that the doctor can see the ultrasound screen. An hour of keeping the tension confined to my hands so that the rest of my body can stay loose. An hour of breathing in the essential oils I rubbed into my hands prior to the procedure (a blend of geranium, lavender, Roman chamomile, ylang ylang, and lemon, in case you're wondering), letting their scents keep me calm.

Then I get to spend a few hours in recovery, monitoring the baby's heartbeat as well as watching me for signs of premature labor. (After all, these procedures necessitate puncturing my uterus with a needle! No one would blame it for getting irritable.) Because my baby is so wiggly, they've had to give medicine to sedate her/him these last few times, which means that part of recovery is waiting for baby to wake up and start moving again. We already know by heartbeat that baby is fine, but the doctors want to know that there's movement, too. As do I, of course!

It's all for this little squish!

But now, hopefully, the transfusions are over. Done. Baby is tanked up with fresh blood and hopefully good to go for a few more weeks. We're down to the waiting game now. Soon enough, this baby will be earthside and all of this--the stress, the appointments, the blood work, the unpleasant procedures--will have been worth it. We're counting down the days.

No one is counting down more fervently than I.

***

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Friday, March 10, 2017

An Rh Sensitized Pregnancy (Part 3)

Somewhere between 30 & 31 weeks

 About 28 weeks into my pregnancy, my baby started to show potential signs of anemia.

At that point, we'd been doing weekly ultrasounds for quite some time (I've honestly lost track of how long exactly). Half of those ultrasounds were at my normal doctor's office, while the other half were in the hospital where I've been seeing a different specialist, one who has a lot more experience with my particular medical condition (Rh sensitization).

As I explained in my last post on this topic, they've been monitoring four things in particular:
  • the MCA, or how fast the blood is flowing through a particular artery in the brain (faster blood flow = thinner blood, which could indicate anemia)
  • the presence of hydrops, or excess fluid around certain organs or under the skin
  • swelling of liver or spleen, both organs that deal with old red blood cells (larger organs = baby's body is working harder to deal with the red blood cells that my immune system is attacking)
  • level of amniotic fluid

Any of these is considered a soft marker for anemia in a baby or fetus; the presence of two or more of these signs is much more indicative of a problem.

At about 28 weeks, the MCA shot up. Before that, it had been staying on a nice curve (it naturally increases speed as baby grows) well within the "acceptable" limits. They've been tracking it on this nice-looking chart (I wish I had a picture of it to share, but I do not) that shows my numbers and what's considered both too slow and too fast. As my doctor once explained, a high MCA doesn't necessarily mean anemia, but he's never before seen a baby with anemia whose MCA wasn't above that acceptable limit. So once my baby's MCA became borderline too high, my doctor immediately ordered cordocentesis. Yes, it was only one of those markers mentioned above, but when dealing with fetal anemia, it's much better to be conservative and to do more tests than it is to watch and wait.

Because one of the potential risks of cordocentesis is early delivery, I was required to have two shots of a corticosteroid ahead of time, which helps speed up the development of baby's lungs. I had the first after that fateful 28 week ultrasound, and the second on the following day at my regular hospital. Both are shots to the butt, so I probably don't need to say anymore about the unpleasantness of it.

Cordocentesis is known by several other names: fetal blood sampling, or percutaneous umbilical cord blood sampling (PUBS). It's a test used to detect certain abnormalities in a baby or fetus; in my case, the goal is to obtain the baby's complete blood count (CBC), a number that can be obtained within minutes, which then indicates, among other things, how many red blood cells baby has (red blood cell count, or RBC). A low number for RBC is a definite marker for anemia. Additional blood tests are also done with the sample collected, but I'm not sure what all else they did.

So here's the basic procedure for cordocentesis. It's an outpatient procedure, so I wasn't checked into the hospital. I got to stay in my regular clothes. They created a sterile area around my stomach with drapes and cleaning solutions, then gave me a shot of local anesthetic to numb the area. Using ultrasound as a guide, a larger needle was inserted through my abdomen and into baby's umbilical cord. Then they took a few small vials of blood, did the red blood cell count with some of it, and kept the rest to be sent to the lab later. The initial CBC did not show that baby was particularly anemic, so that was that.

After the procedure, I had to spend 20 minutes being monitored electronically; they were watching baby's heart rate, to make sure baby had no issues from the procedure, and they were monitoring me to make sure the procedure hadn't set off contractions.

There are definitely risks to cordocentesis, but they're generally pretty small. There's a risk of internal bleeding, hemorrhaging even, since they are sticking a needle inside me and inside baby's umbilical cord. There's a risk of preterm labor. There's a risk of baby reacting badly to the procedure, which might necessitate immediate (cesarean) delivery. There's a small risk of baby dying. But those risks are all small, and (in my mind) they were definitely outweighed by the benefits of knowing for sure if baby was anemic or not.

We spent the better part of the morning in the hospital, then left, ate lunch, and headed home.

The following week, I went back for my normal ultrasound (I'll be getting all of my scans at the higher risk hospital from here on out). Apparently, the MCA had jumped up further above that acceptable limit, so my doctor came in and told me that after cordocentesis the following week (which was already the plan, since we needed to see how baby was holding up over time), it was almost certain that we'd be doing a blood transfusion as well.

Intrauterine blood transfusion. It's exactly what it sounds like: a blood transfusion to a baby (or fetus, depending on how far along the pregnancy is) while it's still in the uterus.

Suddenly, my upcoming appointment was a whole lot more nerve-wracking. My appointment time was moved up and I knew it would be a longer day.

Of course, I now realize I really had no idea what to expect from this new procedure. Sure, I had talked to specialists and read everything credible I could get my hands on, but the theoretical just didn't quite match up to the reality. I assumed they'd do it all at once, cordocentesis followed immediately by intrauterine blood transfusion, and that since they wanted me to arrive sooner it'd all be done fairly early. Instead, we spent pretty much the entire day in the hospital.

The morning started with a blood draw for me (yay?), followed by the usual ultrasound. MCA was still high; still no sign of hydrops, stressed organs, or abnormally high amniotic fluid levels. Then, I was checked into the hospital. Formally. Intrauterine blood transfusion carries much the same risks as the cordocentesis does, but the numbers are higher. This time, the procedure would be inpatient, performed in one of the operating rooms just in case there was an immediate need for a cesarean.

I was brought up to labor and delivery and checked in. We managed to sneak my husband and son up (well, bend the rules a bit might be a better description; the hospital recently instigated a "no visitors under 18" rule, and technically my son wasn't supposed to be there at all. If I had known that, both of them would have just stayed home all day!), and I was put into a labor room. I had to change into a hospital gown (ick) and they gave me an IV (double ick; also: ouch). I was not allowed to eat or drink anything (yay for nil per os? Except not, since it's an outdated and non-evidence based policy) because of the slight risk of immediate delivery under general anesthesia. They wiped my belly down and shaved it (also in case of cesarean). They had me sign lots of consent forms. They even wanted to give me a catheter, but I managed to put that off unless actually necessary, since it literally only takes a few minutes to do. And they put the monitoring belts on me. I was all but prepped for a cesarean.

So there I was, stuck in bed for HOURS, waiting until the blood was ready for the baby (and for me too, just in case). My husband and son got to stay for part of it, but once they left to get lunch, they couldn't come back. Finally, at some point after lunchtime, they were ready. I at least got to walk myself over to the OR, where the setup was much the same as with the cordocentesis. Sterile area on my belly, drapes, me lying there crying (because that's what I do when I'm anxious). Lots of doctors and nurses crowded around. Ultrasound machine on, and a quick scan to make sure everyone knew exactly where they were aiming. The local anesthetic, which my doctor described as a "bee sting," hurt a lot. The needle through my abdomen hurt even more (because I was only numbed on the surface).

Not a lot of pain from the procedure itself; instead, I felt a lot of pressure and tugging. I kept crying off and on, but I tried to focus any tension I had on gripping my kleenix box (since I couldn't hold my husband's hand this time; next time, I'm bringing a stuffed animal!) so that I could keep the muscles in my belly loose. Lots of yoga breathing, and I like to think that the essential oils I applied just before leaving my room helped me stay calm, too.

Turns out baby was more anemic than last time, but not as anemic as the doctor was expecting her/him to be. Consequently, the blood transfusion was rather small; they just gave baby a little boost with some fresh, thick, healthy blood. Everything was all over relatively quickly, thankfully.

I was walked back to my room (yes, at least I got to use my own legs again!) for recovery. After an hour on the monitoring machines, I was allowed to eat lunch (which my wonderful husband brought, although my nurse had to go downstairs and get it from him), and the simple fact of consuming real food made me feel so, so much better. I hadn't been lightheaded or anything before, since I'd been receiving IV fluids, but there's something to be said for a good, hearty salad and a nice chunk of bread.

Apparently, the norm for intrauterine blood transfusions is to continue monitoring mom and baby for at least three or four hours post-procedure. I managed to talk them down to two hours; I wanted to go home and be with my family, and there were absolutely no signs of distress in the baby or pre-term labor in me. And it's a long drive home. So after a few dull hours of sitting in bed--monitoring belts attached, peaceful music on the TV, book in hand... you'd be surprised at how weird and boring this was for me--I was finally able to sign my discharge forms. The dreaded IV was removed, I got to put on my real clothes again, and my little family and I began the long drive home.

And guess what? Before too much longer, I get to do it again. And probably again a few weeks after that. And again every two or three weeks until baby is term enough for induction to be safer than another transfusion. This is the reality of an Rh sensitized pregnancy. It's not pretty. It's far from fun. But it's necessary to keep baby healthy and strong. Ideally, I won't be induced until 38 or 39 weeks, but we'll see how the reality plays out.

***

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Friday, February 3, 2017

An Rh Sensitized Pregnancy (Part 2)


It has long been a mantra of the natural birth birth community that "women's bodies aren't broken." And long have I subscribed to that idea, since I was pregnant with my son and even through both of my miscarriages.

Even now, I still believe it, at least in the sense it was originally intended. Our bodies do indeed know how to give birth, for the most part. When left to their own devices, most women with low-risk pregnancies will go into labor on their own, and given enough time and the right support, birth will eventually happen with no or minimal intervention.

The key word there, of course, is low-risk. More than halfway through a high-risk pregnancy, my perspective on the general not-brokenness of my body has changed.

Almost 26 weeks!

When your baby is in danger from your own body... When your own immune system views your baby as a threat that it may eventually do its best to eliminate... Well, excuse me if it feels sometimes like my body is indeed quite broken.

***

About three weeks ago, I missed a phone call from my doctor, and was rewarded with an ominous-sounding message: "I need to talk to you about your most recent titer test."

We all know that if the news had been benign, she would have just said so in the message. Heck, for most of my blood tests, I never received any kind of call at all, as my doctors apparently subscribed to the idea that no news is good news. So when I received a call regarding my latest blood test, and that call came not from a nurse or the most recent OB I had seen but from my perinatologist (high-risk doctor), you'll forgive me for immediately assuming the worst.

Well, it wasn't the worst, but it wasn't good, either. My titer--my blood antibodies against Rh(+) blood--had just jumped up. For the first few months of my pregnancy, those antibodies were barely detectable, and now they were suddenly in the range that meant I--and more importantly, my baby--required more intensive monitoring. My doctor immediately referred me to a new doctor at a new hospital, an hour away but where they had more experience dealing with Rhesus isoimmunization.

So a few days later, the whole family set off on a long morning drive to see someone new. I had another ultrasound, just as extensive as the typical "anatomy scan" already done at my normal hospital just a few weeks prior, and more bloodwork done, since apparently every new hospital wants to type my blood and establish their own baseline when it comes to my antibody count rather than just relying solely on the medical records they have received for me.

Then, we sat down to talk with the newest high-risk doctor on my team and to get an idea of what we could expect from here on out.

The current prognosis: baby is not in danger. Yet. But we will be monitoring her/him much more closely for the remainder of my pregnancy.

The current prescription: more ultrasounds. Lots more ultrasounds. Weekly ultrasounds.

Monitoring the MCA

It looks like, for the foreseeable future, I will be alternating between my "normal" hospital and the higher-risk hospital for those ultrasounds. Most of them will be rather quick and to-the-point, checking just a handful of things that may or may not indicate anemia:
  • The velocity of the blood flow through the medial cerebral artery (MCA), which is one of the arteries in the brain. If the blood is flowing too fast, it's an indication of the blood being too thin, which is a potential marker for anemia. It doesn't mean baby is suffering from anemia in and of itself, but as the doctor explained, there is a range considered normal; a faster blood while flow doesn't necessarily mean anemia, every baby he has encountered who had rhesus-disease-based anemia also had a blood flow that was above that average range.
  • Hydrops fetalis, or a buildup of excess fluid (edema) in at least two parts of the baby's body. The places the ultrasound technicians are looking are in the lungs, in the stomach, and around the baby's heart.
  • Swelling of baby's liver or spleen. The liver handles the decomposition of red blood cells; if my immune system is attacking the baby's blood and damaging baby's red blood cells, the liver will be working overtime to deal with the aftermath. An enlarged liver is a sign that baby's body is having a hard time keeping up with the damage my immune system is dishing out. Likewise, the spleen plays a role in disposing of old red blood cells, and an enlarged spleen can indicate that the spleen is working too hard to keep up with what's being demanded of it.
  • The amount of overall amniotic fluid. An excess of amniotic fluid (polyhydramnios) is another indicator that Rh disease is starting to become a problem.
Every ultrasound I get will be checking those things, and if the doctors see any combination of things to concern them, then I will potentially face more invasive procedures to verify if baby is actually suffering from anemia (via testing a sample of baby's blood taken from the umbilical cord), and then to treat baby (via intrauterine blood transfusions) if that is the case.

The good news is that, barring some sort of complication (there is approximately a 1% chance that, during an intrauterine blood transfusion, a problem will necessitate baby's immediate delivery), I will most likely be able to keep baby inside until she/he reaches term. If blood transfusions become necessary, they will have to happen every three weeks or so, but the doctor specified that they aim to time them so that the final one happens around 35/36 weeks; baby may still require induction if labor doesn't start on its own before 38/39 weeks (note that my son came at 37 and a half weeks entirely of his own volition, but every pregnancy and every baby is different, so who knows how long of a gestation this baby would choose if left to her/his own devices), but an induction at 38/39 weeks is infinitely preferable to an induction at 34 or 36 weeks, as I was initially told was a possibility.

My second high risk doctor doesn't seem interested in doing any further blood work; as he says, my titers are already up and so we will step up the monitoring in response, and it doesn't really change anything to know exactly what the titers are at in the future. On the other hand, my primary high risk doctor (who I will now be seeing for all future regular prenatal checkups, instead of OBs and nurses from the standard OB/GYN group) sees value in continuing to monitor my titers; while they're in a concern-causing range now, and have only gone up in the past few weeks, it would be a good sign if they either stabilized or started to decrease again. So it looks like I get to continue being a pincushion, but only part-time.

***

So we'll see how things go from here on out. Optimistically, ultrasounds will be the extent of baby's additional monitoring, everything will continue to look normal, and I'll be able to go into labor naturally and have the nice, normal birth I want. But that is far from a guarantee at this point. There's still a pretty high likelihood that induction will be necessary, and a slight chance still of a premature baby if complications occur at some point.

All in all, a high risk pregnancy is the pits. It's unpredictable and completely out of my control, which makes it that much more stressful for me; about the only thing I feel I have any control over at this point is keeping baby's sex a secret until birth, and even that is in danger should any individual ultrasound technician forget my wishes and reveal the sex during one of my many upcoming scans.. For the time being, I am trying to remain focused on my joy at having this baby in my uterus, my excitement at eventually getting to meet her/him, and the knowledge that I have a solid team of doctors overseeing my care and doing everything possible to ensure a healthy outcome.

That's about all I can do. Stay strong, little baby! We're more than halfway there!

***

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Saturday, November 19, 2016

An Rh Sensitized Pregnancy (Part 1)

Rh incompatibility has been an issue for me since the first time I got pregnant.

Not surprisingly, I've spent a lot of time researching it. Chances are good, though, that you know little to nothing about it, unless it's an issue that affects you personally as well. Even if it does affect you, you still might not know much. That's not your fault. All of my pregnancy books--and I have a lot of them--gloss over it. Four or five sentences max. All of which can be summed up with "get the RhoGAM and you'll be fine."

The thing is, that's not true. Not for everyone.

Not for me.

Rh Incompatibility: the Basics

Let's back up a bit. What is Rh incompatibility? The Rh (rhesus) factor is essentially an antigen (a type of protein) that occurs on the blood cells of most people. Eighty-five percent of people have this protein, and are thus considered Rh positive. The rest of us (like me) lack this protein, and are considered Rh negative.

For the most part, for most of your life, this is a pretty inconsequential fact. Sure, if you ever need to receive blood, it'll come up, but it's really not a big deal. When it IS a big deal is during pregnancy. Specifically, it's a big deal if the mother has Rh(-) blood and the father has Rh(+) blood. That is what's known as Rh incompatibility. Any baby created in a union like this has at least a 50% chance of also having Rh(+) blood. And that's where the problem lies.

You see, if some of that baby's Rh(+) blood mixes with mom's Rh(-) blood, then it will spark an immune reaction. Mom's blood sees that extra little protein as a threat, and will create antibodies against it. If this happens, it's called becoming Rh sensitized, or isoimmunized.

Now, this is generally not an issue during a first pregnancy. Most of the time, blood mixing will not happen during a first pregnancy. Sometimes, it may happen randomly during the third trimester, but not always, and when it does happen, there's no real way of predicting it. Chances are good, however, that blood mixing will happen at birth. (And contrary to what others might tell you, it'll probably happen no matter how peaceful and gentle the birth is. It just happens. You can't really prevent it.)

Blood mixing is also a possibility during certain types of prenatal testing (such as amniocentesis), or if the mother suffers some sort of abdominal trauma (think a really bad fall, or a car accident). But even if blood mixing does happen, chances are good that her immune response won't be bad enough to endanger the baby during a first pregnancy.

Subsequent pregnancies, though. That's where things get tricky. If mom is isoimmunized and gets pregnant with another Rh(+) baby, then her immune system will see that baby as a threat. Her immune system will ramp up production of those particular antibodies and go on the attack. This can be bad news for the baby, and can even result in the baby's death if the situation is not monitored and treated appropriately.

RhoGAM: the Solution?

Fortunately, there is a way to prevent Rh sensitization. It's a drug commonly known as RhoGAM, and women who are at risk are advised to get a dose of it at around 28 weeks and again within 72 hours of delivery. Women are also supposed to receive it if there is any other possibility of blood mixing--one of the scenarios mentioned above, or if the woman has an abortion or a miscarriage.

Here's what RhoGAM is: purified anti-D antibodies of the sort that the woman's immune system would otherwise produce on its own. Here's what it does: it goes through and essentially cleans up the woman's blood for her. These purified antibodies attack and get rid of the foreign Rh(+) blood before her immune system has a chance to create antibodies of its own. RhoGAM is not a vaccine (although many people erroneously refer to it as a blood-based vaccine), and it doesn't provide long-term protection. Most studies indicate that it is rather effective if it's given within 72 hours or so of blood becoming mixed; some studies say it's effective if given within ten days. But it doesn't stay in your system long-term, which is why it's advised for every at-risk pregnancy; it doesn't matter if you've received RhoGAM in the past.

Like any medication, it's not 100% effective, and furthermore a lot of people wonder about the effectiveness (and necessity) of the 28-week injection, with no proof of definite blood mixing. But that's another issue. The fact of the matter here is that, given appropriately, RhoGAM is generally quite effective, the additional ingredients are relatively benign (sodium chloride, Polysorbate 80, glycine; trace amount of IgA; no HSA, no thimerosal, no other preservatives), and reported reaction rates are relatively low (take that with a grain of salt, of course).

My Background

I did not receive RhoGAM during my first pregnancy, although I did have a dose of it within 72 hours of giving birth, at the advice of my midwife and at the recommendation of my own research.

After my first miscarriage, I learned that I was Rh sensitized.

But wait, I had the RhoGAM! Well, the way I see it, there are three possibilities for what happened:
~It didn't work for me. That would make me part of the reported 0.1-0.2% for whom RhoGAM is ineffective.
~I didn't receive enough of it. RhoGAM is dosed based on an estimate of how much blood mixing happened, and it's possible that they just didn't give me enough of it. With too low of a dose, my body would have had the immune reaction anyway.
~Isoimmunization happened as a result of my miscarriage; after all, I did spot-bleed for more than three days before going into the hospital, and I was there bleeding everywhere for eight hours before anyone thought to give me RhoGAM (and I obviously wasn't in the right state of mind to ask for it).

Anyway, the fact of the matter is that I am indeed Rh sensitized. I've had it confirmed three times since my miscarriage, and while my titer (antibody) levels are low, my body does still maintain them, and has the ability to make more if it feels threatened again.

Like it just might with this new baby.

So after my current care provider once again confirmed my status as Rh sensitized, they sent me to consult with someone from the high risk group. Yes, that's right; after my perfect, easy, low-risk first pregnancy/birth and then two miscarriages, I'm now officially high risk, which means I'm pretty much stuck with a hospital birth. Not my ideal, but it's the smart (and only) option here.

The real question is, what exactly does that mean for this pregnancy?

The Plan

The ideal first step is to find out my actual risk level. Remember how I said earlier that a baby produced by an Rh(-) mother and an Rh(+) father has at least a 50% chance of also being Rh(+)? That means that, potentially, it could have a 50% chance of being Rh(-), in which case all of this is moot. I can go back to being low-risk, no further monitoring needed.

To that end, my doctor wants my husband to have his Rh genotype/phenotype checked. This will determine if he is homozygous for the D antigen (for being Rh[+]), or if he is heterozygous. If he's heterozygeous, then my odds are officially 50/50.

Don't have a clue what that means? Think back to the basic, oversimplified version of human genetics you studied in high school. Remember dominant traits and recessive traits? You can think of this in those terms. Having the D antigen means you are Rh(+); this is the dominant allele. Homozygeous would mean he has two dominant alleles for the D antigen. Heterozygous would mean he has one dominant and one recessive. I have Rh(-) blood; I have two recessive alleles. If my husband is heterozygeous, the baby would definitely receive one recessive from me, but it's 50/50 as to whether it'd receive a dominant or a recessive from my husband; thus, there is a 50% chance of the baby being Rh(+), and a 50% chance of it being Rh(-).

This is a simple blood test that is easily done, and should definitely be covered by insurance. If we find out that he is heterozygeous, then we get into slightly more advanced testing. The next step would be to determine the Rh genotype/phenotype of my unborn baby's blood. This can be accomplished through a test called the cell free fetal DNA (cffDNA) test. It's a completely low-risk, non-invasive test; it finds free-floating fetal DNA in my, the mother's, blood, and uses that to determine whether the baby is Rh(+) or Rh(-).

Unfortunately, this test is still considered "experimental" in our country. Health insurance companies usually refuse to cover it, although my doctor is going to write a letter to mine to try to get pre-approval. After all, it's cheaper than the alternative (amniocentesis can also determine the baby's Rh status, but in my opinion, the risks of amnio outweigh the potential benefits here), and it could ultimately save them a lot of money depending on the results. If insurance still won't pay for it, I could pay out-of-pocket; I was told it costs $400, which isn't too bad in the grand scheme of things.

So what happens if the baby is determined to be Rh(+)? Or if we can't tell, because insurance won't pay for cffDNA and I can't afford it?

Blood tests. Lots and lots of blood tests. I anticipate having to get blood drawn at every single prenatal appointment for the duration of this pregnancy. That way, my doctors can monitor my titers (my antibody levels). If they stay low, then it's all good. If they start to go up, and if they go up past a certain threshold, then I'll have to start getting blood work done in between appointments, every two weeks and maybe eventually every week.

If my antibody levels get too high, they'll start monitoring the baby via ultrasound. Interestingly enough, doctors can look at the blood flow between the brain and the rest of the body to see if baby seems to be at risk for what is essentially anemia. In a case of isoimmunization, like I have, it's referred to as hemolytic disease of the fetus/newborn. Remember that my antibodies in this case can pass through the placenta and attack the baby's blood, destroying blood cells. So the ultrasound can help the doctors determine whether or not the baby is suffering as a result of my high antibody levels. Because if it gets too bad, the baby can die from this.

Isoimmunization is definitely not something to take lightly.

And if it is determined that the baby is suffering? Well, that depends on how far along I am in the pregnancy. One option is a procedure called an intrauterine blood transfusion, which is exactly what it sounds like it is: it's giving the baby a blood transfusion while it's still in my uterus. To do this, they'd use ultrasound to monitor the baby's position while sticking a long, thin needle through my abdomen. The goal is to get the needle into the umbilical cord (near the placenta, where it doesn't move as much), and then to give the baby a blood transfusion. This would help offset the effects of my own immune system's ongoing attack.

Unsurprisingly, there comes a time in pregnancy when this procedure is no longer safe (and that's not to imply that it's ever without risks; it's definitely risky, but the alternative--doing nothing--is worse). My doctor describes it as balancing the risks of the procedure with the risks of prematurity: basically, once the baby hits a certain stage of development, it makes more sense to deliver early than to try to attempt an intrauterine blood transfusion.

Induction. Something I dread, but it's a real possibility in this pregnancy.

I was told that, generally, intrauterine blood transfusions are not performed if the baby is past 34 weeks gestation. In some cases, it might not be possible after 32 weeks; that would require a consultation with a different doctor in a different hospital (they don't have that kind of specialist at the hospital I'm going to), who would do yet another ultrasound to examine the baby's size and placement and determine what's best.

So basically, it's possible I might end up with a premature baby here. I acknowledge that reality even as I fervently maintain my optimism that it won't come to that.

*****

And that's what I'm up against.

To be honest, very little of what the high risk doctor told me at our consultation was actually new information to me. After my first miscarriage, I was devastated and I refused to even entertain the possibility of getting pregnant again for a year and a half. As my grief started to wane (it never has, and never will, go away completely), I began once more to feel the overpowering urge to have another baby. I knew now that I was Rh sensitized, but I didn't fully understand the ramifications of that. And since the Internet is strangely lacking in real information about pregnancy after isoimmunization, I took the initiative and saw a high risk specialist on my own, to find out exactly what an Rh sensitized pregnancy would entail.

I believe in informed consent when it comes to all medical decisions, especially those related to pregnancy, and it seemed irresponsible to jump into a potentially risky situation without knowing any details.

Hopefully, this helps you better understand Rh sensitization, and exactly how it affects pregnancy. It's scary stuff, and I wish that information about it were more readily available. It drives me crazy how much misinformation is out there, getting spread around on blogs and message boards, but hopefully this post can help counter that a little bit.

***

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