Friday Favorites

I came across so many great blogs this week! Here are a few of my favorite, in no particular order:

Marybeth, aka MammaPie, writes Downside Up and Outside In. In the post About Seeing Color, Marybeth discusses White Privelege and that phrase “I don’t see color.” That phrase grinds on my nerves because unless you’re blind, you see color. Pretending otherwise, refusing to acknowledge that we come in many colors, is just disrespectful.

Monica at Healthy Green Moms writes about her thoughts on “living a healthy and simple life.” The Inconvenient Truth About Raising Kids talks about the real questions we have to ask ourselves as parents and examines how our past impacts our parenting.

I just love Amber Strocel‘s blog! Her posts are always reasoned and well-written. In Making Hospital Birth Better, Amber examines the polarization of birth options and if there are ways to make hospital births more comfortable. I really appreciated her thoughts, as I had the most medical delivery possible for Menininho: a planned c-section under general anesthesia. I honestly believe that a c-section was the best option for us, but too many women are led into births they don’t feel comfortable with, and we don’t address those issues well. Too often it becomes “all epidurals/c-sections are bad” or “you’re crazy if you choose a home birth.” I found many of the comments on this post to be insightful as well.

As my regular readers know, most Thursdays I participate in Mama Kat’s Writers’ Workshop. I came across the blog Peanut Butter in My Hair from that meme today. The author wrote a beautiful post entitled The Heart That Never Quits, about the love of mothers. Simple and moving.

I will have linking available next week. Apparently WordPress.com isn’t allowing me to use inlinkz. I have purchased my own domain name and will be moving the blog there this weekend. Stay tuned for more information!!! And as always, thanks for reading!

Friday Favorites

I’m starting a new meme on my blog called Friday Favorites. Each Friday I’ll feature an article or articles from other bloggers that I’ve really enjoyed over the week. If any of you think you might like to participate from time to time, I’ll set up a Mr. Linky account. So, here are this week’s favorites, in no particular order:

Anne at Dou-La-La is a blogger I’ve gotten to know from Twitter. [That’s a great place to find fabulous blogs to read, by the way!] A month or two ago we got into a conversation about the use of doulas for planned c-section births. I wondered whether they would be useful, since it seems so much of their purpose is in supporting the mother during labor and helping prevent c-sections. Anne showed me how useful one would have been for Menininho’s delivery and promised to write a blog post about the use of doulas for c-sections. I thought it was great!

Enjoying the Small Things is another blog I came across via Twitter. In this post Kelley, the author, details the birth story of her daughter Nella Cordelia. It’s one of the most beautiful birth stories I’ve ever read. You might need some tissues but I think everyone should read this!

Amy at Crunchy Domestic Goddess wrote a great response to the Today Show’s segment on a woman having a c-section because her baby was estimated at 10 pounds. Without passing judgement on the mother, Amy succinctly summarizes one of the misconceptions about birth. It, and the follow-up post on her main blog, are good articles to read for any expecting mother.

I came across Marcus’ blog via Twitter too. He writes an article entitled Who’s Black and Who Isn’t? about what it means to be multi-racial in the UK. As a bi-racial person myself, this really resonated with me. My favorite quote is: “So when it come to ticking the box on a form, for mixed race people there will never be one answer as to how we define ourselves. It may differ from our own siblings, and may even change over time. They key thing is, it’s all about self-definition.”

Putting the Fun in DsyFUNctional is a blog I’ve come to read through Mama Kat’s weekly writing workshop. This week I learned she’s an ICU clerk, and she put together a great list of Dos and Don’ts for when you have a family member in the ICU. These are all great and I have to agree: DO bring treats for the nurses!

I hope you enjoy these articles and bloggers as much as I did!!!

Delivery in Marfan

There’s seemingly a dearth of information about pregnancy and delivery in Marfan patients and it’s a subject I get a lot of questions on. I was really lucky to happen to live in a city with an OB who specialized in Marfan and have access to one of the country’s top cardiologists during the latter half of my care (he’s now my regular cardiologist, since we moved to California). So, I’d like to share what I’ve learned from my experience, my doctors, and reading up online in a two part series. You can read the first entry, Pregnancy in Marfan, here.

Please keep in mind that I am not a doctor myself, and (like everything else in Marfan), what works for MOST patients may not be what’s right for YOU. Do your own research and talk with your doctors and experts! The National Marfan Foundation has resources and my OB has expressed a willingness to talk with any pregnant/soon-to-be-pregnant Marf woman. Email me at marfmom@gmail.com for his information or for copies of the papers I cite.

There are different points of view on what the best way for a woman with Marfan to deliver. I’m going to present the benefits and dangers of each, so that you’ll be able to work with your obstetrics team (OB, cardiologist, anesthesiologist) to plan the safest delivery for you and your baby.

Natural (unmedicated, vaginal) delivery: No one recommends this for Marfan patients. When your body is in pain, your blood pressure rises. A rise in blood pressure, particularly one that would be as prolonged as with labor, puts you at risk for dissection. You can dissect even if your aorta is not dilated prior to labor. Your descending aorta seems to be the most at risk for dissecting without prior dilation.

Medicated vaginal delivery (epidural or spinal catheter): My OB, Ohio cardiologist, and California cardiologist all agreed that this is the optimal form of delivery for many women with Marfan (those who do not have an aortic root close to 5 cm and those who have not experienced rapid aortic growth during the pregnancy). Prompt pain medication eliminates pain and therefore decreases the risk for aortic dissection. Recovery time for the mother and child is also greatly reduced.

Traditional c-section: This can post a similar risk to the natural delivery. Any time your body undergoes surgery, especially such a major surgery as a c-section, your blood pressure rises. In addition, Marfan skin does not always heal properly and there could be scarring complications. However, some OBs feel that a c-section is safest because it is in a more “controlled” environment than a vaginal delivery and is much shorter than labor would be. My c-section took 45 minutes; the average first labor is 12-18 hours (of active labor, usually defined as at least 4 cm dilated). And as I stated above, for women with significant aortic dilation or a rapidly growing aorta, c-section is the safest route. It is important to note, however, the several papers have documented the risk for uterine rupture after a c-section. In one paper, Dr. Reed Pyeritz (a member of the NMF’s Professional Advisory Board) wrote that he saw this in 4 of his 11 patients (Pyeritz, 1981). That said, that was also in 1981, long before Loeys-Dietz syndrome (LDS) was discovered. LDS carries with it a risk of uterine rupture and it is possible that some of these patients had LDS, not Marfan, and didn’t know it (my own posturing here).

C-section under general anesthesia: Dural ectasia, to a varying degree of severity, affects 60-70% of people with Marfan syndrome. Dural ectasia is like the equivalent of an aneurysm of the dura sac, the sac of fluid that protects the spinal cord. While it can occur anywhere along the spine, most often it is at the base of the spine, right where the epidural or spinal catheter would be inserted. In patients whose dural ectasia is severe enough, a c-section under general anesthesia might be performed. The reasoning for this is that the needle from the epidural or spinal cath would cause a tear in the dura sac, which would lead to a leak of the spinal fluid. This causes a TERRIBLE headache, which can last up to a month. “Marfriends” of mine who have had a spinal leak say the pain and nausea is only lessened by remaining flat on the back. You can imagine the blood pressure issues that could arise from such a headache, not to mention the postpartum problems, like trying to breastfeed.

Difference between an epidural and a spinal catheter: My understanding is that a spinal catheter has a slightly thinner needle and provides a stronger dose of medication. While a woman using an epidural might feel it begin to wear off towards the end stages of labor, my anesthesiologist told me that a spinal cath would leave a woman numb for quite some time after delivery. I am not sure of the additional risks of using a spinal catheter, although I would think it would make it slightly more difficult to push. I have heard some OBs do not allow their Marfan patients to push at the very end of labor and instead using their hands or a vacuum to assist the delivery.

Postpartum care: There is still the risk of aortic dissection after delivery. Women with Marfan must be closely monitored postpartum. An echo no later than a week after delivery is recommended, and again at one month postpartum. Many beta-blockers are safe for breastfeeding, but not all, so discuss your medication and dosage ahead of time with your OB and cardiologist if you intend to breastfeed. You should know that a prolonged high blood pressure postpartum could signal an aortic dissection, even if you have no pain.

My experience: Because of my dural ectasia, my obstetrics team, my orthopedist at Johns Hopkins and I decided at 37 weeks that it was safest for me to have a c-section under general anesthesia. My blood pressure spiked while I was under, to 170/107 (for comparison, I try to keep it at around 100/60 – 110/70). Even on a host of medications it took 5 days to get me to a systolic of 140 and 8-10 weeks to get down to a systolic of 120. No one knows why this happened. Luckily, I didn’t suffer any permanent damage (and no aortic growth). I wrote more about it here.

Moral of the story? Each method of delivery brings its own set of risks and benefits. Keep an open dialogue with your team (and if your OB isn’t meeting regularly with your cardiologist and the anesthesiologists, insist on it) during your pregnancy to determine what is safest for you.

And again: The opinions offered at Musings of a Marfan Mom are for informational purposes only and are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare provider with any questions you may have regarding Marfan syndrome and any medical condition. Never disregard professional medical advice or delay in seeking care because of something you have read here.

Citations:
Meijboom, L. J., Vos, F. E., Timermans, J., Boers, G. H., Zwinderman, A. H., Mulder, B. J. M. (2005). Pregnancy and aortic root growth in the Marfan syndrome: a prospective study. European Heart Journal, 9, 914-920.

Pyeritz, R. E. Maternal and fetal complications of pregnancy in the Marfan syndrome. Am J Med. 1981;71:784-90.

The Body is BACK (mostly)!

Feb. 2nd, 2009

Jan. 5th, 2010

It took almost a year, but yesterday morning I stepped on the bathroom scale and low and behold! I’m at my pre-pregnancy weight! My body’s not *quite* the same…I’m a little curvier than before I got pregnant so I don’t fill into all my old pants (and alright…I *might* be sucking in the c-section belly a bit in the first shot!) but it feels great to be back where I was weight-wise. My first #mamafit goal is complete! 🙂

2009 in Review

It’s been a busy year in our household! Here are a few of the highlights:

January: I had just graduated from graduate school and was enjoying doing nothing but being pregnant. About halfway through the month I learned my delivery plans were going to change pretty drastically. My grandfather passed away after a long battle with cancer; his funeral happened while I prepped for my c-section.

February: At the beginning of the month we welcomed Menininho. It was a complicated post-delivery, one that I hope to never repeat. We moved to California and I made my first silly new mom mistake.

March: I learned of the losses of two Marfan friends. Menininho was blessed and formally given a name. Our family came to visit. Mark was diagnosed with Type 1 diabetes.

April: A pretty boring month, but I did blog about some of my baby “must haves”.

May: We started using cloth diapers and won’t go back! Mark officially graduated with his MS. I also had the stress test that started a chain of events.

June: Mark and I celebrated our 2 year wedding anniversary. I also started a series of posts about my life with Marfan.

July: My Life With Marfan posts continued and I prepared for the annual National Marfan Foundation conference.

August: Menininho and I flew solo to visit my mom and sister. I finished up the series and went to my 4th conference, where besides working with the teens I was also one of the closing speakers.

September: My cardiologist discovered a problem with my heart and I decided to wean Menininho early in order to start a new medication. A few weeks later Mark was diagnosed with Celiac disease.

October: We had a mishap at the pumpkin patch, and then better success. I moved my blog from Blogger to WordPress.

November: I relived some childhood memories with MamaKat’s Writers’ Workshop and we got to spend Thanksgiving in Ohio, seeing all of my and Mark’s extended families.

December: The inner breastfeeding advocate in me wrote a post about a woman’s right to breastfeed and the inner patient advocate in me wrote a post about being an empowered patient. We bought a tree, spent too much time in the ER and had a failed Christmas tradition.

I want to thank all of you who read my blog, who give me feedback. I am humbled that you take time from your day to read what I have to write. I look forward to getting to know more of you and your writings in 2010!

~ Maya

Menininho’s Birth Story

Warning: This is going to be a rather lengthy post, because I want to record all the details. It’s a balance how much information to give, but I want other future “Marf Moms” to have an idea of what they might expect when it’s their turn to deliver.

Mark and I reported to the hospital at noon on Feb. 2nd for my scheduled c-section. They were pretty good about getting me back to the prep room right away, so I thought my surgery might actually be on time (hahahaha). It ended up being a lot of hurry up and wait however, with having to justify my c-section to every nurse that came to see me thrown in. The IVs weren’t so bad but oh my goodness no one told me I was going to have to get a catheter while I was awake (sorry if that’s TMI but it’s true and it was awful and it made me briefly wonder if this was all going to be worth it)! Every once in awhile a doctor would pop his or her head in to check on me, but no one could tell me when I’d actually be going into the OR.

I really appreciated my anesthesiologist. Throughout the time we worked together I found him to be very honest and cautious. He came in and explained to me that I would be needing an arterial line (a monitor through one of the arteries in my arm) in order to best monitor my blood pressure during the surgery. I really, really did not want this done and I started to cry a little. I think at this point it was about 3:30 PM and I was supposed to have had the c-section at 2:00. I was hungry and tired and had already been stuck all over from various IVs/the catheter. I wasn’t afraid of the surgery itself, but I think at that point I was just tired of the pain and not looking forward to the pain that was to come.  The anesthesiologist was very kind though, and as he wheeled me away to the OR he gave me a mild sedative through my IV to make getting the arterial line a little easier. One of the nurses also held my hand and talked to me throughout the process to try to distract me (I say process b/c it was a med student doing the line and after 3 tries he’d butchered me so badly that Dr. Small had to put the line in himself on my other arm). Below is a picture of my arms a few days post-op. The bruises are mostly black now and not hurting quite so much.

My memories immediately post-op are a little fuzzy. The way Mark tells it, he was waiting for me in the recovery room when he heard me from down the hall repeating “Ow. Ow. Ow. It huuuuurts. Ow. Ow. Ow. It huuuuurts” in a loud but monotone voice. I kept this up for a little while, then suddenly stopped, looked at him, and asked “What is it?” “It’s a baby boy,” Mark replied. Mark said I got a smile on my face and proudly announced:

“I KNEW it! I WIN!”

And then I promptly returned to my monotone chanting.

Mark and I had to spend the first night apart from Menininho: Mark and me on the telemetry unit and Menininho on the maternity ward. I didn’t find out till the next day, but this was because Menininho and I had both had complications from delivery. Menininho had a low body temperature that they couldn’t regulate and then developed low blood sugar as a result. We weren’t allowed to see him until 10:30 at night and then only for a 15 min. visit so I could try to nurse. With some pleading, I convinced the nurse to bring Menininho back every 3 hours so I could feed him. However, since social visits to other floors are not allowed for babies, the nurse would give Menininho to me, he’d feed, and I’d have to give him right back. Mark didn’t get to hold his son till Tues. afternoon, when we were reunited downstairs on the maternity ward. By then everything was fine with Menininho and he’s still doing really well.  However, I was extremely frustrated by the lack of communication to me or Mark about my condition and the telemetry nurses didn’t allow Menininho on the floor the next morning, so we were separated from about 6 am to 1 pm and I was yelling and panicked.  I wanted to be nursing my baby!

My complications were a little longer lasting. Tuesday morning the anesthesiologist came to meet with me. He told me that during the c-section, my blood pressure had shot up to 177/107 (that’s super high, esp. for me). Unfortunately, the doctors were still not able to get it down, and that’s why I’d had to spend the night on the telemetry unit being monitored. I actually ended up having to spend an extra day and a half in the hospital so the doctors could try to get my blood pressure down to a more manageable level.  The doctors aren’t sure what caused it, but they also refused to investigate.  I was corresponding over the computer with my cardiologist in California, who was pressing for an echo of my aorta and an ultrasound of my kidneys, but the cardiologist on the floor refused (and, I later learned, refused to even call my local cardiologist.  My very nasty message on his answering machine was the first he’d heard I was having problems).

By my 2nd night in the hospital I was on quadruple my normal dose of beta blockers.  I realized that this might not be safe for my son, and I asked my nurse about it.  She called the pharmacist, who responded with (direct quote here): “Why the hell is anyone letting her breastfeed?”  None of my doctors had realized my dosage was toxic through breastmilk and I had to stop breastfeeding immediately.   I was devastated.  However, I am sooo grateful to the nurse I had that night.  I had brought my pump to the hospital and she showed me how to use it.  Every 3 hours she had me pump around the clock to keep up my supply, in case I would be able to breastfeed down the road.  She encouraged me and told me I was not a failure for this momentary setback.  The next morning the cardiologist mocked me in front of his interns for persisting in my desire to breastfeed, so I threw him out of my room (yes, you CAN do that).  I found a replacement medication on my own, had it OKd by my local cardiologist, and was breastfeeding 36 hours later.  Later on I hit one more hurdle when the hospital pediatrician tried to get me to supplement with formula because Menininho had lost 6% of his birth weight, but I knew that it was normal for a baby to lose up to 10% and once I informed her of that, she left me alone.

I’m feeling a lot of emotions right now.  I’m glad to finally be a mother.  I’m tired, too, of course.  But I’m also really upset about how crappily I was treated post-delivery.  I have more medical knowledge than a lot of patients.  Some of those doctors have known me for years.  And still, still I was helpless.  I still have hypertension with no idea why.  I’m hoping to get more information in 2 weeks when I’m in California.

But, we’re VERY glad to be home together now! We’re thankful for those nurses who helped ease the stress of me being sick, and for all of our friends who have provided support/meals/visits/other help this far. 🙂

Our New Addition

We are so excited to welcome Menininho into our family! At some point I’ll post his birth story, but for now just some pictures. Sorry for the delay in getting these posted…I’ve been having trouble with Blogger!

I’m sure you’re thinking…Menininho?  What a name! It means “little boy” in Portuguese, my mother’s native tongue, and no, it’s not our son’s real name.  I figure I’d better use a pseudonym for him because right now he doesn’t have a say in me doing this blog.  🙂

And the Arrival Date Is..

….February 2nd! Groundhog Day!

I think this is the perfect day for us, so I’m very glad it worked out for my OB as well. Mark and I won’t have to stay in the hospital during the weekend, it gives Mom the most time to stay here to help out, and it’s the easiest day to get pictures of the baby to my grampa, if he’s still alive then (it’s touch and go but he’s been so excited about the baby I kind of hope he can hold out another 11 days). My OB was already booked on the 2nd but before I could even request the date he said he’d be willing to stay longer in the day so that I could have the anesthesiologist who he felt was the best. I really appreciate this and I don’t mind that we have to wait most of the day.

I know that Baby Z and I are in the very best of hands.

In unrelated news, I’d like to remind you of my previous ER Post, where I made a list of actors who I wished would return for this final season. George Clooney IS coming back, which had been rumored, but 3 other characters from my wishlist are returning this season or recently have as well! They are Dr. Romano (same episode that Dr. Green appeared in), Dr. Cordray (last week!) and Nurse Hathaway (for the same episode as Clooney, which they started filming today).

Just had to share my excitement 🙂

A Change in Plans

One lesson I’ve learned from having Marfan syndrome is to expect the unexpected. I also think having Marfan is why I haven’t really been nervous at all about delivering the baby. I’ve spent a lot of time in hospitals and though I’d never call the experiences “fun,” I am comfortable there. I know what to expect: the smells, the sounds, the general flow of the environment.

So, I wasn’t totally taken aback when I found out on Thur. that there was a hitch in our well-thought-out delivery plans (though I was mad). Because I’m a high-risk pregnancy, I have an obstetrics team comprised of my OB, my cardiologist, his nurse practitioner, and 3 anesthesiologists (so whoever is on call when I come in to deliver will be familiar with me). They meet once a month to discuss my case. Well, Thur. was my first time meeting one of the anesthesiologists face to face. I was surprised and angry to learn that he had NO idea I have a rare spinal condition called dural ectasia. It’s not found outside of people with Marfan and Loeys-Dietz syndromes. Really, I have no clue what my team has been doing in those meetings if that didn’t come up, b/c it’s been my #1 concern with the pregnancy as far as complications for me go. In any case, the anesthesiologist told me he and his resident would stay up late researching my condition and talk to my specialist at Hopkins, and that as of now he didn’t feel comfortable doing an epidural or spinal catheter on me because of the potential I’d have for permanent disability due to my dural ectasia.

[Future doctors, take note: to me, this is the mark of a great doctor. Not all doctors can admit when they don’t know something/don’t feel comfortable doing a procedure, but if you can, a patient will trust you so much more.]

After I talked with my Hopkins doctor and my OB, prayed a lot, and my OB consulted with many other doctors, we decided it is best to deviate from my birth plan. I am going to be having a c-section under general anesthesia to deliver Baby Z. The date for that will be set tomorrow at my OB appointment.

I feel really at peace about the decision. In some ways, it’s easier for me to wrap my head around this than going through labor because I know what general anesthesia is like and how I react to it, as well as what the recovery process from surgery tends to be like. I would be lying if I said I wasn’t a little sad though. I think it will be kind of weird to not be “there” when my baby is born (and I assume Mark won’t be allowed in the OR, so he won’t be there either). It will be an hour or two before I can meet him/her. And just so everyone knows, Mark isn’t allowed to call/text/email anyone to announce the birth till I see the baby because I don’t want to be the last one to find out the gender. 🙂 However, in the grand scheme of things an hour or two away from Baby Z is not a big deal and it’s more important that we’re all safe so we can start our new life together as a family of 3!

Crazy People (aka women who get glee out of freaking out pregnant women)

Ok, first of all, I passed out asleep in class for the first time in AGES. I sat down, opened up the powerpoint, and promptly fell asleep with my computer in my lap. Classy! But, this all worked out b/c today’s class was all about child hazards. And really, who needs to freak out about everything bad that can happen to kids before the baby is even born?

Me, apparently.

After class, this woman comes up to me and asks when I’m due. I tell her and she laughs and says “That’s what you think!” So I replied that yes, it *is* what I think because I am going to induce if the baby makes it to his/her due date. She then feels the need to tell me that it’s unhealthy to induce a full-term baby!  I said “Oh well I want my husband there for the birth and besides, I was late and a meconium birth and seeing as I almost died from that, I would never let a child of mine go very much past his/her due date.”

(I did not explain about me being high-risk because I could just see her saying it would be better I die than use an epidural or something crazy like that.)

Her response? “Ugh. It’s so sad when one little bad experience makes a woman scared to do the right thing.” Ummmm? Just guessing here, but I doubt my mom would classify that as a “little bad experience.”

The whole conversation wouldn’t have been too bad if she’d stopped there, but she didn’t. She went on to first lecture about how the longer the baby is in the womb the better: always. “In fact,” she told me, “pretty much all the babies in my family baked for TEN months!” I was so close to telling her that ANY full term baby “bakes” for 10 months b/c 40 weeks = 10 months, but I just wanted the conversation to be over. From there, she decided it was her duty to tell me all about bad birth stories. She delivered her 2nd child in the bathtub alone, for instance, because her doctor and (now ex) husband didn’t believe she was in labor. Another woman her midwife knew had a one minute labor, and so on and so forth.

I finally had to turn my back on her and walk away while she was talking and just wave goodbye over my shoulder because she would NOT quit talking or take a hint.

What is it with women that they 1) think it’s OK to criticize another woman’s birth plan to her face and 2) tell a first time pregnant woman all her horror stories? Ayiyiyi!

Anyone else want to share the crazy things crazy people told them?