January 1, 2011
by marfmom
2 Comments

2010 in Review

Happy New Year, everyone! I thought I’d kick of 2011 with a recap of some of the best of 2010 (AKA – I didn’t get my stuff together to do this yesterday like everyone else).

January: Interestingly (given where I ended the year), I celebrated finally losing all the baby weight from having the Menininho. I also attended my first play group date, my mother and brother both guest-posted as part of my “Marfan Through the ‘Unaffected’s’ Eyes” series, I wrote a letter to medical professionals everywhere, and I had to give up babywearing the Menininho.

February: I got a super sexy new back brace, which had his own name. Mark guest-posted to finish out the series, I started the Friday Favorites meme, wrote some advice on how to prepare for a child’s visit to the hospital, and bought my own domain name.

March: I wrote tips for both choosing a Marfan cardiologist and a pediatrician, and Kate Gulbranson answered your breastfeeding questions. We met a really bitter salesman, I started acupuncture, and I wrote my most popular blog post: My Beef with the Michael Phelps Marfan Obsession.

April: We announced my pregnancy with Smudge, which led to me explaining why we decided to have another baby. I wasn’t too happy when I found out I wouldn’t be getting an ultrasound for awhile though.

May: This was a month of doctors’ appointments. I had my first prenatal appointment and we took the Menininho in to get his hearing evaluated, where he got referred to a speech therapist. This was a bit of an emotional roller coaster for us.

June: I outlined my personal risks and benefits to having a VBAC, got a new diagnosis, and the Menininho got his first haircut. We also were first introduced to the autism diagnosis and had an uphill battle getting him services.

July: Our family of 3 traveled to Texas for the National Marfan Foundation’s annual conference, where I was surprised with an award. We found out baby Smudge was a boy, and the Menininho had an eventful EEG.

August: New diagnostic criteria for Marfan syndrome were published, so I did a 3 post series about them. I attended my first ICAN meeting, the Menininho signed for the first time, and I ended up in the hospital: twice.

September: Trying to optimize my chances of a successful VBAC, I tried out hypnosis. I showed off Smudge’s MRI pictures, received an email from the CEO of Babble.com, showed off my intense stretch marks, and the Menininho finally started his therapeutic preschool.

October: We made our annual trip to a pumpkin patch and in the midst of some complications and new information from my OB I put together my birth plan.

November: I had a realization about parenting a child with special needs, came too close to having Smudge, and spent Thanksgiving with some other families from our church.

December: I gave birth to Baby J at the beginning of the month, and took a couple weeks “maternity leave” by posting the birth stories of other women with disabilities.

Here’s to a wonderful 2011 for all of us!

December 29, 2010
by marfmom
8 Comments

Baby J’s Birth Story, Part 2

(Part 1 is here)

I tried to sleep but I just couldn’t…I was too nervous/excited and the nurse was coming in every two hours to check my vitals and up the pitocin. Plus, it’s not very comfortable to sleep with the monitors on your belly and hooked up to an IV, and then having to get up every bit to pee because of the IV. I highly recommend avoiding all of those things if you can.

At about 4 in the morning a nurse came in and informed me she was turning off the pitocin. She was one of those control freak nurses who doesn’t like patients asking questions. “Why?” I asked. “Your baby is having trouble.” “What do you mean?” “He’s having problems.” “What KIND of problems?” “Decels.” “Variable or late decels?” “Late.” “How often?” “With every contraction.” I finally got her to explain that the doctor wanted to give the baby a break from the pitocin to see if the decels resolved themselves and to, I think, regain the variability in his heart rate, which is an indicator of how well the baby can cope with these kinds of contractions. I woke up Mark, filled him in, and he went and get our doula. At this point I only had 4 units of pitocin, at 1 unit every 2 hours. I could feel contractions, but just barely. Late decels with this little medication was not a good sign. I had been worried about this scenario because I’d noticed that baby Smudge had had some issues with good variability off and on for weeks. Sometimes it would take an hour to get his heart rate to go up enough to pass the NST.

I changed position some, and then I think Mark, our doula, and I decided I should get some sleep. Around 6:00 I was informed that the baby was still having decels, even though the stop of pitocin had basically stopped my labor. I guess these were variable decels; I couldn’t see the monitor from my bed. I tried changing positions again. If it had been a cord issue, the changing of positions should have helped stop the decels.

About 8 or 9:00 in the morning the OB on call and her resident came in to talk with me. The decels had finally stopped, but she wasn’t willing to put me back on pitocin yet. If I wanted to wait a few hours and see if the baby went all that time without any decelerations, maybe they could try the pit again, but she wasn’t confident that Smudge would tolerate it any better given how he looked on the monitor for several hours afterwards. The other option of course was a c-section, which the doctor felt was necessary. Going home was not going to happen.

I had suspected this was coming, and had just sent Mark home to get himself more insulin, thinking the doctors wouldn’t come by till later in the morning and that way he wouldn’t have to leave while I was in recovery. The way I saw it, it was either c-section now or put the baby through more stress and have a c-section later, possibly an emergency one that would necessitate general anesthesia, since I had no epidural in. My doula and I had spent the time from 6 till now trying to think of other options, but this was looking like a case where a c-section was actually warranted, depressing to me as that was. Consenting to the c-section now, as opposed to an emergency situation, would allow me more control over the situation, something I did not have at all when I had the Menininho.

The doctor didn’t want to waste any time: she was ready to do the c-section then. I convinced her to wait until Mark got back. In the meanwhile I showered and went over my birth plan with the doctors: I wanted to be kept abreast of what they were doing, I wanted to hold my son in my arms before they took him away, and if possible I wanted delayed cord clamping for a few moments, all of which they agreed to (though Mark said they didn’t actually delay the clamping).

However, then the resident started in on me about getting my tubes tied. I understand that this is a normal question to be asked if you’re having a c-section, but this was at least the 6th time I’d been asked. She got frustrated that I wouldn’t agree to one (having Marfan, I avoid unnecessary surgeries) and demanded to know a date for my husband’s vasectomy. Then she wanted to insert an IUD, which I again refused to. This went on for several minutes. It was incredibly degrading and even my doula was upset by it! There have been many times during this pregnancy when doctors have made comments about me not having any other children, from the first prenatal appointment onward. Several of these doctors didn’t know me or my case at all, just my diagnosis, so the belief that I should not have any more children was based solely on the fact that I have a disability. Ugh.

Aaaaanyway, then I met with the anesthesiology resident to discuss my spinal catheter. I really didn’t like her at first. She called the attending while in the room with me and said “Yah, I’m here with Mrs. Zimmerman. Yah, her baby was having decels earlier but he’s fine now, but she wants a c-section,” then left the room. I looked at my doula and said “WHAT?! It’s my understanding this is not an elective c-section” and she agreed with me. I think this was just an example of a resident not knowing all the information, but it was unsettling. When she came back with the attending I asked the attending to be the one to do the spinal cath insertion, because I thought he’d be better at dealing with it (dural ectasia makes doing a spinal cath difficult). I felt bad because I could tell the resident was insulted. After the 3 of us discussed it further I decided she could do it after all because neither doctor has experience with d/e and she does several a day, whereas the attendant does about 1 a month.

Finally, it was time to go. I got suited up in my compression stockings, Mark put on his “outfit,” and I walked to the OR.

The nails matching the socks was unintentional but nifty.

I insisted on walking into the OR instead of riding on the gurney.

They wouldn’t allow our doula to be in the OR with me at all, which was definitely upsetting, but they did let Mark hold my hands while I had the spinal catheter put in. I am still surprised at how peaceful I was the entire time. I cried a bit after I got the reglan for nausea and it made me sick and I began to worry that I’d pass out on the table, but other than that I was very calm. The surgery itself felt really odd, and I’m pretty sure the resident made a mistake at one point, judging on some things the attending said, but she fixed whatever it was. The attending anesthesiologist explained everything as it happened, and offered to lower the curtain so that Mark and I could watch our son being born. I surprised myself and declined, but Mark stood up and peered over. I cried when I heard his first cries and never wanted to let him go when they handed me him all swaddled up.

After Mark and Baby J left, the attending OB had a few words for me. She said she believed there was a problem with my placenta and offered to send it to the lab so I could maybe have some closure as to why Baby J was in distress. I hope to have results in a few weeks. She also told me that my uterus was extremely thin at the previous incision site, such that she thought it was a very good thing I’d had the c-section…“you made the right choice,” she’d said. (Again…I didn’t feel like there was a real choice.) She told me that she was trying to strengthen up the site in case I should ever have a 3rd pregnancy and want to try for a VBA2C.

Shortly thereafter, Mark, Baby J, and I were reunited in the recovery room. I was able to nurse him right away. Overall the c-section and recovery experience this time around was a million times better than it was when I had the Menininho. I’m still trying to process all my feelings about having a second surgery, but I am very glad to finally have Baby J here and any sad feelings about how he got here don’t take away from that.

December 27, 2010
by marfmom
2 Comments

Baby J’s Birth Story, Part 1

(This is pretty long because hey, it’s my story and I want to remember it all, so it’ll be posted in 2 parts.)

I woke up on December 3rd and didn’t feel quite right. I was crampy, which wasn’t anything new, but it just felt different. I felt impressed to hurry and pack my labor bag as I got the Menininho ready for school. After I dropped him off I went to Starbucks, per my usual, and texted Mark to tell him that I was probably being silly, but I just felt funny and my cramps hadn’t gone away, so maybe he should tie up things at work just in case and I’d let him know if anything changed.

Immediately after school, M. and I headed to the hospital for my semi-weekly AST/NFI. We had lunch in the cafeteria and even though I wasn’t hungry, I felt like I should make sure to eat a large meal in case I didn’t eat again for awhile: soup, sandwich, cake, and pineapple.

First up was my AFI. Although my fluid levels had been good for the past week, today they had dropped down to a 6. 8-18 is normal, and 5 or below signals a problem and is a cause for induction at my hospital. I happened to have the “nervous nurse,” who calls the OBs for anything at all abnormal. “Oh, looks like I’ll be resting and drinking a lot more fluids this weekend,” I said to her. She wanted to know if I’d been more active than usual and except for a 10 minute (if that) walk every day (hey, my pain was so bad I was lucky to get that much, don’t judge!) I’d been pretty sedentary. “Well, we’ll see what your doctor has to say,” she said.

Next came the NST. I watched the baby’s heart rate decelerate to under 100 several times, enough that the nurse had to bring in the pulse ox machine again to confirm that yes, that was the baby’s heart rate and not mine. I texted Mark: “I’m pretty sure the nurse is going to call my OB, who is going to send me to L&D for observation. Get ready to come; I’ll text you when I know more.”

Sure enough, I was eventually sent to the hall with M. to wait for my OB. “Yah, yah,” I joked to the nurses. “We all know what’ll happen. Dr. Cautious will come, tell me things look bad, and then threaten to induce me and I’ll be back to getting daily NSTs for a couple of days to show him the baby is ok.” My doctor came quickly, waved hello as he ducked into the exam room, then returned to the hall a few minutes later. He confirmed that I should go to L&D for more observation, and was concerned enough about the baby’s decels that he asked me not to take the Menininho home first.

I called Mark and my doula, then headed upstairs to get hooked up to the monitors and figure out a plan of action. I decided that since M. had a speech therapy appt. and we couldn’t find the therapist’s number to cancel, Mark should take him home and then come back to get me. Naturally, my doctor came in to talk with me less than 2 minutes after Mark left. He brought with him 2 other doctors and a nurse. This still bothers me. I was in a very small room, in a vulnerable position, and there was no reason for him to overcrowd the room except to intimidate me. In all my trips to L&D he’d never brought in anyone else to meet with me. My doctor informed me that the baby had had a few more bad decels (which Mark and I had observed), but was currently looking good. However, his baseline heart rate had moved to a lower than normal range and given that, the sharp decrease in fluid to its lowest level yet, and the various signs of distress he’d shown off and on over the past few weeks, my OB felt that something was not right.

I was given 3 choices: induce now, have a c-section, or go home and return the next day (but this time no one was recommending the last option). Because I was a VBAC patient, induction would consist of low levels of pitocin to dilate me at least a half centimeter (2 weeks after my first exam there was no change: I was still not dilated at all and only 50% effaced), then turned off and a foley cath used to induce labor the rest of the way. I was skeptical of the pitocin because I knew it could increase my risk of uterine rupture, but I was told my levels would be so low (1 unit every 2 hours, maxing out at 10 units; normal is 2 units every 15 minutes, up to 30 or 40 units) that my risk should not be dramatically increased. The process was expected to take about 2 days.

I asked for time to think and for Mark to get back before making a final decision, knowing this gave me about 2 hours. After calling Mark and asking him to hurry, I called my doula, who offered to come keep me company, and my cardiologist. I did not trust my OB or anyone on the obstetric staff, but I knew my cardiologist would never intentionally lead my astray. He is one of those doctors who really listens to what is going on and then always takes the time to explain his thought process and make sure patients are truly informed.

My cardiologist came straight over, sat on my bed, and discussed my options with me. I cried telling him about how I feared another c-section and my worry about dissecting and being left alone with no one believing me. He promised to be there and to control my blood pressure better than my doctors did with M. After our discussion he said if it were him, he wouldn’t go home but would choose the induction. He felt like going home would probably be ok but that given the baby’s history the risk was still significant enough he worried about the baby’s well-being overnight. “I’m not trying to scare you,” he said, “but if you go home and something happens to your baby you’ll never forgive yourself.” (And I knew he wasn’t trying to use this as a scare tactic, just being honest.) After being present for many other Marfan deliveries, my cardiologist felt the induction would go very quickly, thus meaning a c-section was not a real concern.

I felt a little more at peace after he left, and spent the rest of my time researching my options and praying. I waited till Mark and our doula arrived before coming to a final decision, but I knew that an induction was what needed to happen. With the feelings I’d been having all day, it seemed like this is what was meant to happen.

By this time it was 7:00 and I was starving. My amazing doula convinced my nurse to hold off on the pitocin until I’d had dinner. Unfortunately, my hospital’s cafeteria shuts down at 6, so dinner had to come from the Starbucks cart in the lobby: 2 massive blueberry muffins, an apple, and a hospital issue turkey & lettuce sandwich on wheat. By 9 PM the pitocin drip had started and it was show time.