Archive for the ‘Things I’ve learned’ Category

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.

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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Goodness. The days fly by don’t they? I wake up in the morning with every intention of returning to my lonely little blog (is anyone still out there? ) and before I’ve had time to think, I’m crashing into bed barely able to string enough words together to make a coherent sentence.

Olivia Moonpie is 11 weeks adjusted today. On Tuesday, she’ll be 22 weeks actual age. Five and a half months old. People who knew her when look at her now in amazement. The baby who could fit in the palm of your hand is now 12 pounds of chubby cheeks and thighs. The preemie who spoke in growls and squawks now giggles and babbles and make the most endearing “HUUUU” noise. She smiles so big her eyes crinkle up. At this very moment, she’s sitting in her bouncy seat telling her toy bug a very long, detailed and humorous story as she smacks said bug around. She holds her head up to look over our shoulders, she stands on her own two feet for as long as you’ll help her balance. I expect her to roll over any day now and if she could, I have no doubt that she’d take off running. She’s willful and opinionated. She has a tooth coming in.

We made the decision to not push nursing on her. I went in with her to the lactaction consultant recently and learned that her latch was too shallow. I could try to retrain her to open her mouth wider, but after lots of soul-searching and a couple of feedings that dissolved into tears and screaming, it simply made more sense to accept that almost four months of bottle feeding and two months of latching incorrectly (although we’d been told she had an excellent latch at earlier visits to the LC) has created a bottle fed baby. I still pump and provide everything she eats, so my goal of a breastfed baby is still being met and now, we have nursing sessions during the day that are as much about comfort and snuggling as they are about eating. When she’s hungry, she gets a bottle. I was sad at losing out on an experience that would have been a given had things gone “normally”. I’d dreamt of putting my child to my breast to feed her and it is yet another instance of feeling cheated out of something. However, I am working on readjusting my perspective. Instead of feeling cheated because I can’t nurse her, I have the freedom bottle-feeding provides while still having the ability to enjoy the closeness of nursing when it suits us both.

This funny, smart, goofy little monkey has completely altered our lives. The grief that lay over our days like a fog has faded. There are still so many times I find myself thinking about the “what ifs” or wondering how different things would be with Lennox and Zoë running around. Oddly enough, if they were here, Olivia Moonpie probably wouldn’t be. But, as I hold her and feel her snuggle her fuzzy head deeper into the crook of my neck, I find I can think of them with all the love I hold in my heart for them and miss them without feeling ripped to shreds. I tell Olivia Moonpie about them often. She wore the pajamas I’d bought for the twins to wear home from the hospital. She snuggles in blankets made for them. Their car seats keep her safe. I miss them terribly, but part of them live in their little sister and I find that my grief has lost it’s razor sharp edge. Yes, I am sad that this morning I didn’t have two squirmy almost three year olds in my bed, but I DID have a snuffly, snuggly Moonpie there.

I am having a difficult time accepting that there will be no more Moonpies for us. After the Great Ordeal, I’ve been informed that future pregnancies would be very very bad and extremely irresponsible. My body does not take to pregnancy well. My body does not take to abdominal surgery well. We still have a large number of high quality frozen embryos, but unless we decide to find a gestation surrogate, Miss Moonpie will be my only child. This is hard for me to wrap my brain around. I had hoped to have two children. I really wanted Olivia Moonpie to have a sibling who was close in age. I know first hand what it’s like to grow up with half-siblings who are significantly older. It takes a very long time before the relationship reaches a point where the decade or more age difference stops interfering.

I’m trying to figure out how to order my life so I can stop feeling like I’m caught in a game of The Sims and all my needs meters are in the red. I’ve never been the most organized person around. Oh, I always have good intentions and start out trying to be orderly. And I DID manage to survive having the house on the market for an entire year. But, as soon as it was off the market, I was right back to my old habits. I cannot seem to actually put away a basket of clean clothes to save my life. I need to change this. Billions of other mothers manage to maintain their lives while caring for a small, needy sack of cute potatoes and so can I. I just need to figure out how they do it. And I need to learn not to rely so heavily on the fact that Shannon works from home. I can’t count on that always being the case and it isn’t fair to him now. So, my early New Years resolution is to figure out this whole stay at home mom thing. One day at a time.

Fifteen years ago, I would have told you I didn’t see having kids in my future. Now, I don’t know how I lived without her. I survived the NICU. I stumbled through bringing her home and learning to care for her without the safety net of nurses and monitors. She thrives. She smiles. She lights up when she sees either one of us. I guess we’re doing something right after all. So, if things are a little quieter around here, don’t worry. We have our ups and downs, and there are days when none of us manage to get out of our pajamas and days when it seems like someone (usually me) is doing nothing but crying and also days when the bliss takes over and there’s nothing for it but to sit and sniff her head. And, I think, maybe, just maybe, we’re starting to find our path again. We’ve made it through the darkest of woods and the longest, scariest of nights and the shining light that brought us out safely is a little Moonpie.

Lennox and Zoë would approve, I think.

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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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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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What to do

It’s a question that comes up often. “How can I help my friend/sister/whomever who is on bedrest/in the hospital/has a baby in the NICU?”

I know how helpless it feels to be that friend/sister/coworker. I can only imagine how helpless it feels to be on the otherside. At the time, when people would ask how they could help, what we needed, I constantly drew a blank. I needed Lennox’s membrane to seal. I needed to stay pregnant. I needed…lots of things no one could give me. Everything else simply didn’t matter.

Let’s start with hospital bedrest since that’s the only kind I know. This weird things happens, to me, at least when in the hospital. Normally, I love to read. I can spend hours and hours at a time with a book. In the hospital, I had no desire to read. I couldn’t work up any energy to do crossword puzzles, or sketch, or play computer games. All things I love to do and never have the time for. I slept a lot when people weren’t around. I watched lots of mindless television when I could find something on one of the 15 channels I had (one of which was hospital information, two were in a language I don’t speak, and I think at least one was a gospel channel). Company is a huge help. I know I didn’t have much to say, beyond what food they’d tortured me with, but it was always nice to have the distraction of a guest who wasn’t too uncomfortable seeing me in bed, unshowered, hooked up to machines. If a co-worker is working remotely, like I was, see if there is anything she needs from the office to make it easier…notes, phonelists, whatever. Bring movies and stay to watch them. There wasn’t much in the way of errands or chores that we needed help with, but others might have some. Want to bring gifts? If there aren’t dietary restrictions, bring food. Real food. Hospital food is deadly. Bring nice hand lotion. I was allowed a 5 minute shower ever day. Shannon got me lots of good smelling soap, shampoo, and face stuff so that that five minutes was as decadent as possible.

After. My biggest piece of advice is don’t by baby gifts if the baby is in the NICU. Wait until you’ve received news that the baby is coming home and then ask Mom and Dad what they still need to be ready. I have hats, NICU onsies, and books that never got used and that I can’t look at now.

You know how after a baby is born, there’s that two week period when Mom and baby are encouraged to just sleep and recover and do nothing but take care of each other? When baby comes early and is in the NICU, Mom doesn’t get that two weeks. She can’t because baby needs her and that requires driving back and forth. NICUs are crowded with equipment and there often isn’t room to sit. Mom basically has to forget that she had a major medical procedure and that’s so hard. So, what helps? Gift cards. I know, sounds cheesy but wait.

Many chain restaurants are collections of several different restaurants. Chili’s, for example. You can get gift cards that are good at five or six restaurants and I’d be willing to bet that at least two of them can be found within a few miles of the hospital. That means Mom and Dad can get food easily after a visit to the NICU, when it might be late and cooking just seems too hard.

Target. In one store, that stays open until 10 at night, you can get groceries, a pair of pants that don’t hurt your c-section incision, breastpumping supplies, and a new cd to listen in the car as you make all those drives back and forth.

Visa Gift Cards. Accepted anywhere that takes visa. Not terribly personal gift, but you are helping your friend AND giving them control over what they receive so it is always what they need…even if what they end up using it for is putting gas in the car.

That sort of thing relieves stressed parents of just one more worry.

Yard work, errands, phone calls, laundry, child care (if there are older children), that sort of thing never hurts to offer. Just to give you an idea of what a typical day was like for us when Zoe was in the NICU (we both worked from home during that time)…

Midnight to 3am – sleep
3am to 3:30am-pump
3:45am to 6am – sleep
6am to 6:30 – pump
6:30 to 7:45 – shower, change incision dressing, get dressed, eat breakfast. Shannon checked email while I packed bag of pumping supplies and got bottles of milk into cooler.
7:45 – 9:30ish – drive 10 miles to hospital, parking takes ~10 minutes, 5 minutes to walk to NICU, three minute scrub-in, visit with Zoe. Give Shannon some daddy time while I pump.
10:00 – 5:30 get back home. Shannon works. I get a snack and work for about an hour. Then pump. Then fix lunch. Then work for a bit, pump, snack. Nap at around 2. Pump. (I worked while pumping too).
5:30 – Get milk in cooler. Restock bag with clean pumping supplies (Shannon was on part sterilizing duty. We had three full sets, so one was always ready to use, one was being sterilized, and one was dirty).
6:00/6?30-ish – Drive to hospital. Same as morning visit, only this one is more relaxed and longer.
9:45 or so – go home. find something for dinner.
10:45 – pump, check dressing on incision, go to bed

It was a non-stop schedule. I couldn’t drive for two weeks, which meant that we constantly had to choose between say, going to the grocery store or spending a little more time with Zoe. A doctor’s appointment, which I had several of because my incision didn’t heal well, threw everything off for both of us. A chauffeur who could take me to an appointment, so Shannon could work, or someone who could go to the grocery store for us would have been wonderful. We ate well because my mother filled our freezer with soups in two serving portions. If we hadn’t had that, we probably would have lived off cereal and peanut butter sandwiches. So, there are plenty of opportunities for helping. Just don’t say, “Let me know if there is anything I can do to help.” because that requires brain power and thought and then contacting you and there just isn’t enough energy during that sort of day for that. Figure out what you can do and say, “I’m free X evening. Give me a list and I’ll get you some groceries.” or “When is your doctor’s appointment? I’ll be happy to drive you.” There will be polite protests. Hopefully you know your friend enough to know just how much to push back and insist. And sometimes, just show up with a decaf mocha latte and sitting and listening. There are a lot of worries circling like hungry sharks in that brain and someone who will listen to them without offering platitudes is a life saver.

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