Musings of a Marfan Mom

Menininho’s Birth Story

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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. :-)

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7 Comments

  1. Wow, I’m sorry you had to be poked and everything! But now you and Menininho are home and good and, of course, babies are worth it! His pictures are really cute. His present is coming along and should be done soon!

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  2. Wow! What a story! I love birth stories! Your arms look painful!!! Yikes! Congrats on your beautiful baby! I hope your move goes well- how exciting and scary!

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  3. I just happened upon your blog in a round about way! My friend emailed to tell me that she and her blog was listed on the tikiblog as one of the 10 latinas you should meet and that is where I found your blog listed. I was intrigued because I also has Marfan Syndrome. After reading some of your posts I see that you went through a lot of what I went through 17 years ago. I used to live in San Jose and I went to Stanford to the Marfan clinic for treatment and my son was born at Lucile Salter. Having Marfans and having a baby is no easy thing but it looks like you made it through. I don’t see what hospital you went to though, was it Stanford? It think it’s great that you are using this medium to get the word out to other patients and maybe some who just want to know what it is that we have. My mother died in 2006 from complications of her Marfans but she was 75 years old. She took great care of herself once she found out what she had. We think that my grandfather had the same thing and died from it. He died in his 40’s and she made it a long time after him. I hope to make it longer than her! The more that this subject is talked about the more research can be done! Thanks.

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  4. So Maya, I don’t know how I never saw this post until today but I have to applaud you for this:
    “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).”

    and this:

    “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.”

    You may have FELT helpless but you were clearly far from it. :)

    I had my own issues with how I was treated after delivery, actually, and had similar feelings where I was trying to recover and orient myself in my new role as a mother and felt bulldozed by post-partum nurses. (Mainly with regards to breastfeeding and pacifier usage.) I vowed then that next time I’d be more of an advocate for myself and my baby, and you inspired me to follow through on that.

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  5. Maya,

    I am so sad that your first days with the baby were more like a fight. And I am so happy that you were such a good informed and strong mom and made your way!

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  6. I was told that the extra large quantities of fluids given during surgery can raise blood pressure. did you ever get resolution of this?

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    marfmom Reply:

    Resolution of the high blood pressure? It went down about 2 months postpartum. I have heard that about the fluids, but I don’t think it would last that long or go that high. The stress of surgery can also raise blood pressure, and I was exhibiting symptoms of pre-eclampsia shortly before delivery.

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