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Archive for the ‘things i wish i didn’t know’ Category

Team On The Road is hitting the pavement again in the March of Dime’s March for Babies. This year we’ll be walking in late April, which is nice because last year we had to start the walk in 40-degree weather!

Even nicer, this year, Olivia Moonpie’s Momom and Papa will be flying out to join us for the walk! Yay!

We’ve set a pretty hefty goal for our little team. If you’d like to help us out, please click through to our team page and make a donation. As always, we are walking in memory of Lennox and Zoë and in honor of Olivia Moonpie. We also walk to honor the memory of the babies of our online friends who should be here, but aren’t. The March of Dimes has become a cause very near and dear to my heart and I truly hope that through our fund raising efforts they find more ways to make sure no one else ever has to go through what we did. Every dollar counts so please, if you can, make a donation today! We also welcome other walkers to our team. If you’d like to join Team on the Road and walk in your local March for Babies, let me know and I’ll help you get it set up and make you a t-shirt!

Silly Face

This silly face was made possible, in no small part, by the work of the March of Dimes. What more do I need to say?

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I had to count to figure that out. I no longer carry this running tabulation of how long it’s been, just like I no longer carry a running count of how many weeks adjusted and chronological Olivia Moonpie is.

Where am I?

I remember when Glow in the Woods started up and the metaphor just clicked with me. I was so lost in this big, dark, scary woods and I had no idea which direction was the right one. I just kept putting one foot in front of another hoping and trusting that there had to be an end somewhere. It was perfect. I’ve been lost in woods before, literally. I have crawled on my hands and knees through a tangle of wild rhododendron so thick I couldn’t stand up and I couldn’t see more than a few feet ahead. The branches grabbed at my hair and my clothes, the roots tangled up my boots and hurt the palms of my hands. I had to just keep going, hoping it thinned out sooner rather than later. And that is exactly how my grief felt. It snagged and pulled and scratched. It was a million little papercuts that left me feeling thin and fragile and ready to shatter. There would be moments when I’d think I’d reached a clearing only to find myself plunged back into it by the most inane things.

One step at a time. Keep yourself busy. Go through the motions of life, whether you want to or not, whether you really feel it or not. Then one day you wake up and realize you are just living again.

Writing helped. Saying their names helped. It wasn’t easy. Just weeks after Zoë died, I had to call the IRS to figure out how to handle them on our taxes. That poor woman who had no idea what she was in for when she took that call from the queue sat with me until I could talk and waited until I could breathe again. Their names, Lennox and Zoë, caught in my throat more times than I can remember. Having to explain to various medical people how many times I’d been pregnant, how many children I had. “No, they were born alive. Lennox lived almost three days. Zoë lived three weeks.” I said that over and over. I know it was always more information than they needed, but I needed to say it, needed to have their short lives detailed, needed to let the world know that they were HERE. And like stones in a river, the sharp points are slowly wearing away. I find that I can talk about them, at least briefly without hearing that….thickness in my voice. You know what I mean, that sound that means the tears aren’t far behind.

It still gets me. Even now, I’m typing more by touch than sight because the tears have steamed up my glasses too much for me to see the screen or the keyboard. Olivia Moonpie turned one this week. She’s standing up and starting to cruise. She has gone from belly crawling to crawling on her hands and knees. She says, “Mama.” She feeds herself little bits of food. She will offer to share her puffs or her teething ring with you. I watch her and wonder what it would have been like with the twins. I wouldn’t have my Moonpie. Or maybe in a more perfect world, Moonpie would be trying hard to keep up with two three year old siblings and the house would be so full of noise and fun. I wonder all the time.

Olivia Moonpie was my lamp post in the snowy woods. She was the spraypainted blaze on the tree, marking the trail. She is a giggly, wiggly, drooly, silly, spinning YOU ARE HERE dot on the map. I try not to hold her tighter than she wants me too. I try not to get too many tears on her just barely not bald head when I rock her to sleep. She has done more to heal my heart than she will ever understand. The scars haven’t faded. They are still angry and red. They may never fade but, before Olivia Moonpie got here, the scars hadn’t formed and everything was raw and open.

Zoë and Lennox taught us to take as much pleasure in the small moments as we possibly can because they are so fleeting. We learned that NOW is what matters, far more than what might be ahead or what just passed. The laundry will wait ten minutes while we watch Miss Moonpie bounce like a bronco rider in her jumperoo. A cold dinner is a perfectly acceptable trade-off for a tickle-fest on the floor. Tomorrow, next month, next year there will be something else taking the place of right now, but right now she IS and we are blessed beyond belief to be witness to it and part of it.

That is right where I am. It isn’t where I ever thought I’d be and it may not be exactly how I wanted it. It just is. I’m not brave. I’m not strong. I’m not perfect. I just never gave up on the belief that I couldn’t possibly be lost in those woods forever. The trees have thinned out some. The thorns aren’t as dense or as sharp. I can see bits of sky now. There are still rocks to trip me up and sometimes the climb is steeper than I’m used to, but I’m getting there.

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The Right Where I Am Project can be found at Still Life With Circles. It’s a fantastic project with some amazing posts by parents in all different stages of grief. Bring your kleenex (and sorry I left out the link originally!)
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I’ll be the first to tell you, I’m the biggest pansy in the bunch when it comes to injections. I can actually point to the two events in my childhood that caused my needle anxiety, but I won’t bore you with those details.

I can, in an emergency situation, give myself a subcutaneous injection. It requires a stern talking to and a healthy dose of reminding myself exactly why I’m giving myself these injections. Then there’s usually a false start or two and I end up sticking the needle in waaay too slow. Then, I have to just sit and wait for my blood pressure to come back down.

IM injections require a particular ritual (when we do them at home. I do manage, somehow, to put on my big girl panties when I have to get a shot in a doctor’s office). First, I ice the spot until the ice pack no longer feels cold against my skin. Then, I “assume the position” and close my eyes. This is when I usually remind Shannon that “red means no, green means no” to make sure he switched to the small gauge needle. Then, I start to imagine one of my favorite places in minute detail and work on slow inhales/slow exhales until Shannon tells me it’s ok to move again. We did this for all of the FETS and IVFs until this last one.

One consistent problem I’d had with PIO shots was that the injection sites would, after about two weeks, start to be itchy. But, it wasn’t an itchy like it was irritated from the shots or from the medication (I even switched from peanut to sesame to ethyl oleate to make sure). It was a deeper itch, almost a tingling sensation like the area was numb and just starting to regain feeling, which I guess it was since I froze it every night like a popsicle. I started to wonder if the daily freezing was causing problems which made me wonder if I could get through the shots without freezing and with my sanity intact.

So, this time when we got to the PIO, that first night I took a deep breath, held on to the edge of the table I lean against for dear life, and tried to find my happy place and keep that muscle relaxed all while anticipating some excrutiating pain. I was stunned when Shannon told me he was done and I could move. I hadn’t felt a thing. As long as your “nurse” keeps the needle straight and does the stick without any hesitation, there really isn’t any more than a tiny prick. Now, there were some nights when for whatever reason….I wiggled or Shannon wiggled or the planets weren’t lined up right…that I was definitely aware of the needle, but nothing I couldn’t tolerate. After each injection, Shannon massaged the spot for a few seconds, I’d walk around for a couple of minutes and that would be it.

I still can’t watch as he preps the needle. I still feel my heart rate pick up as time for the shot gets close, but I did PIO from just before transfer all the way to 12 weeks and didn’t ice once. I didn’t have the itching that I’d had before. I had almost no lumps and the ones that did form usually disappeared within a day or two. I didn’t even have any real soreness until the last two weeks.

If you are doing PIO and icing and heating, and you find that you are getting lumps or itching at the injections sites, I’d highly recommend trying it without the ice and heat. They are great security blankets and I know how intimidating that ginormous needle is, but it was a noticeable difference for me when I made that switch. Just remember to find your happy place! It’s still an injection every night and it still sucks ass, but for me, it only sucked ass for the time it took to get the shot and the other 23 hours and 58 minutes of the day, I didn’t have the constant reminders of it. Of course, your mileage may vary! 😉

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The question was asked on the last post, “What is the difference between PIO and 17-p?” so I thought I’d do my non-scientific/non-medical-background best to answer. I’m not a doctor, I’m just a woman who’s been to this circus a few times and I’ve figured a couple of things out.

When you go through infertility treatment cycles that use a suppression method, essentially what you are doing is overriding your body’s natural production of hormones necessary to create and maintain a pregnancy. This allows the doctor to control those hormones more precisely. The downside is that, if you are fortunate enough to have an embryo implant, you still have to provide the hormone support until the pregnancy is advanced enough to take over. That’s where the progesterone in oil injections come in. They maintain the higher progesterone levels needed (increased progesterone is what prevents you from having a period. In a “normal” month, if you did not conceive, the progesterone levels that increased to help build the endometrial lining starts to drop and that decrease is what triggers your uterus to expel the unneeded lining and start the cycle all over again). PIO injections are continued until the placenta is established enough to produce progesterone on it’s own. That’s usually close to the end of the first trimester. Every doctor seems to have their own timetable for when to stop PIO injections.

17 Alpha-Hydroxyprogesterone Caproate or 17-p as it’s known to it’s friends, is used in high-risk pregnancies when there is a risk of preterm delivery. It is given as an intramuscular injection, like PIO, usually starting around gestational week 16 and continuing until week 36 or delivery (although I think I’m only doing it until 34 weeks since 36-37 weeks WILL be delivery for me). According to a study conducted from 1999 to 2002 by the National Institute of Health, the 17-P relaxes the smooth muscle, blocks the action of oxytocin, and inhibits the formation of gap junctions. Now, if you’re like me, that went in one ear and out the other. What Dr. T explained to me is that women in the study displayed better cervical competency, with improved length of the cervix and a significant reduction in the rate of preterm delivery (although in the very high risk cohort of the study, the rate of preterm delivery still remained high at 36.3%, indicating that more research into the causes of preterm delivery are needed. I agree!).

The shots are essentially the same as the PIO injections used from just before an IVF/FET transfer to sometime around the end of the first trimester. It is a compounded suspension of progesterone in an oil base injected into the glutes. We had a home healthcare nurse come over to teach Shannon how to give the shots. There were a few minor differences in this shot and how we were taught to give the PIO injections (basically, wipe the area, hold the skin tight, inject and withdraw, massage).

First, he was taught a technique called z-tracking. After locating the area for the injection and cleaning it with alcohol, he takes the palm of his non-injecting hand and pushes the fat layer out of the way. Ever done one of your injections and had a bead of PIO ooze back out after withdrawing the needle? This method prevents that. You shove the subcutaneous fat to the side, inject the medication, withdraw the needle and “close the door” by releasing the fat.

Second, the nurse told him that after he removes the air from the syringe to make sure he’s drawn up the correct dosage, to then draw back a small bubble of air. This bubble will move to the back of the syringe (the plunger end) when the 17-p is being injected and it will ensure that all of the oil is pushed from the needle while still in the muscle (apparently that will help with the itching and stinging as the oil can be irritating to the skin and surface layers) and the air is not harmful in either the muscle or the fat layer as it will simply be absorbed.

Third, the 17-p injection is given over a 60 second period. I will tell you right now, that is a REALLY long time to have that needle in your hip. I’m not happy about it at all, but that is the technique used in the study and that’s the technique that is being taught for the highest success rate. It’s a 1cc injection, so that’s veeeeery slow.

Fourth, the nurse said DO NOT RUB, MASSAGE, ICE OR HEAT. I’m supposed to just walk around after the injection to help work it in. The injection site was sore to the touch for a few hours afterwards, to the point that leaning back in a chair was uncomfortable, but once that passed, it was fine.

Fifth, the 17-p is administered once a week instead of once a day. Thank goodness! I’m not sure I could take a 60 second injection every day. I’ve only done one so far. We’ll see how it goes over the next 18 weeks. If anyone is interested in actually reading the New England Journal of Medicine article on this study, I’ll be happy to scan it and send it along, or you might be able to find it at NEJM.ORG. The study is called “Prevention of Recurrent Preterm Deliver by 17 Alpha-hydroxyprogesterone Caproate” and the volume information is N Engl J Med 2003; 348:2379-85.

Hope that answers the question! Basically, one helps you stay pregnant in those early days and the other helps keep you pregnant later of if you’ve had problems with that before. Since our best guess of what happened to Lennox is that my cervix softened enough to allow bacteria to come into contact with the sack and infect the placenta, leading to the membrane rupture (we don’t know for certain because we hadn’t gotten to a point where anyone thought to start checking my cervix) anything that keeps my cervix long and tightly closed is a good thing.

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So, the sonogram looked good. Dr. N said she just wanted to make certain nothing funky was going on, although if it were an ectopic pregnancy I’d be in quite a bit of pain at this point so she wasn’t expecting to see anything. Part of me wonders if she was worried about this being a molar pregnancy and just didn’t want to mention it if it weren’t the case. The rest of the clinic staff might not, but Dr. N seems to be taking a very kid-gloves type of approach to me, which goes a long way to explain why I suffer the frequent frustrations with her support staff.

I asked her about the almost non-existant drop in hcg and here’s what she told me:
With methotrexate, you compare the 5-day hcg with the 7-day hcg. You expect to see a drop by 7 days. Prior to that, you may even see the hcg go up a bit after the injection. So, while we’re all disappointed with this stall-out, it isn’t unusual. If today’s beta doesn’t show a significant decrease I’ll go in tomorrow for another injection with the dose increased from 75 units to 100 units. Please, oh please let it be going down. I felt mildly crappy on 75 units for the day. I don’t WANT to experience 100 units…plus, I have a ton of painting to do tomorrow.

Should have the results any minute now.

And 76 is today’s score so no second shot. I’ll take it!

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I guess it takes me the whole month to work through my answers to the 6×6 questions posted at Glow in the Woods.

1 | How would you describe your relationship to fear before and after the loss of your baby?
Fear. Yeah. I think before if you had asked me what I was afraid of, I would have rattled of a list of fairly general things…heights, small spaces. Fear was sort of a nebulous emotion and had a lot to do with the what-ifs. After Lennox died, fear revolved around Zoë.  She was the focus of everything…hopes, dreams, love…so fear was about things going wrong; an infection setting in; an xray of cloudy lungs.  Somewhere in the back of our brains was the fear of what she faced years down the line as a micro-preemie.  There was also the looming fear of losing her, but that one was always shoved way down.  We couldn’t allow that monster out of the closet because that fear was debilitating.  After Zoë’s death, now, fear is this tangible thing in my life.  It’s what makes my throat clench when the phone rings.  It’s why I can’t take that trip. Fear isn’t about hypotheticals anymore. There aren’t any generalities. It just is.

2 | Is your lost baby/are your babies present in your life? In what way? I am not a religious person. I don’t believe in angels or heaven. I don’t think that Lennox and Zoë are watching over me. I carry their memory in my heart. I wear their names around my neck. Their footprints hang over my desk. I speak of them often and I think of them constantly. I live my life as Lennox and Zoë’s mother and try to honor their lives as best I can. They will always be present in my life because of that.

3 | Tell us about something said or done after your loss that left you feeling nurtured or supported.There were so many instances, it’s hard to pick. Some were so subtle, I’m not sure I could even put them into words. I am constantly amazed by the level of support I’ve received through this blog, from people I’ve never met. It’s been the people who didn’t turn away, who didn’t try to tell us what we should or shouldn’t feel, who simply held us in their hearts who were my source of support and strength. Those who were able to say, “I can’t do anything but be here for you, so here I am.” made all the difference.

4 | Tell us about something said or done after your loss that left you feeling marginalized or misunderstood.Ah, I won’t answer this one because I am trying to be the bigger person about it. There was only one instance of it and it hurt me to my very core.

5 | What’s taken you a long time to do again? How did it feel, if you have?So many answers to this pop into my head. It’s taken me a long time to absolve myself of guilt (and I haven’t completely. I still go over everything that happened and wonder what I could have done differently). It’s taken me a long time to look at my scar without cringing. I’m also still not completely there. It took me a very long time to be able to say their names out loud and speak of them as dead, as past tense, even just to myself. The first times, I stumbled over the words and felt ill, like my stomach had filled with acid. I’m working on it.

6 | How would you describe yourself as a partner before, and after?I am clingier now. I find myself in need of reassurance. I felt and still do feel, to a degree, a tremendous amount of guilt for bringing this pain into the lives of the people that I love. I worry about how much Shannon worries about me now. And I try to make sure that we find all the happiness we can, right now, this minute because this minute is all I can control. The next minute, it might all go away. I’m less willing to waste time waiting for the right moment. I refuse to let things go unsaid

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I just happened to notice two visitors found this blog by searching for “stillborn birth announcements.” And since I’m already in the sharing things I wish I didn’t know about mode…

I went around and around about sending out announcements. After all, pretty much anyone I would send them to already knew what had happened. My family has a good communication network. But, I finally realized that Lennox and Zoe deserved that formal recognition.

But…there aren’t many examples to work with. Oh, sure, you can find tons of annoucements for babies who came home. Bazillions of them in just about any style you can imagine. Ones for twins…slightly fewer, but only slightly. Ones for babies who died or were stillborn? A small handful. Ones for babies who lived three days or three weeks? Yeah, not so many. I don’t have the link here at work, but when I get home I’ll update this with the link to the website I did find. I started with their examples and went from there. Update card examples

After many, many rewrites, we came up with something that we felt truly expressed our situation. We started with the idea that you can’t understand beauty, joy, happiness, anything fully unless you have it’s opposite to compare to. Yin and Yang, balance in everything.

“To know perfect joy, you must sometimes experience the deepest sorrow.

Allison and Shannon sadly announce the early arrival and passing of our children, Lennox and Zoe. They were here for far too short a time, but they taught us to feel perfect joy and their absence fills us with the deepest sorrow.

Zoe Harper Simpson 1 pound 10.4 ounces January 3, 2008 – January 24, 2008

Lennox Maximilian Simpson 1 pound 13.2 ounces January 3, 2008 – January 5, 2008”

We also included a separate slip of paper with information about their memorial fund.

I don’t know if that helps those two people who came here, I hope so. I’m sorry you have to do that particular search. I hope you do send out announcements though. It will be incredibly painful. Each envelope you seal, address and stamp will be like another papercut-sharp reminder, but every single one, every person who receives that announcement is another person who remembers with you.

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