Thursday, June 4, 2009

It's been a while

I haven't written anything for over a month. I don't know how or why that happened. It's just that I suddenly got interested in other things for a while. I still read many babyloss blogs (as well as many other newly discovered blogs thanks to Google reader). But I went to the book store a month ago and found I was interested in books that DIDN'T have to do with death, dying or babyloss. Progress? Maybe. I bought “Outliers” and “Eat, Pray, Love.” Then I bought “In Defense of Food” and got “Food Matters” from the library. I became pretty much consumed with reading these suddenly new and interesting topics.

All of this new activity has me thinking a lot about how I'm coping with my winter of discontent (my year in hell, whatever you want to call it). Sometimes, I'm frankly mystified and even a little horrified that life does indeed go on. It does. I can still laugh. I can still care about things. I can still love. Seriously.

In other ways, I'm amazed at what a person's mind can handle. It's the rare moment of pleasure that's not accompanied by a parallel thought: I've lost so much. I would give anything to have her back. To relive those last few months with her. To change everything. I see the many pictures of Samantha around the house and I think she should be here with us. It kills me. That sweet girl deserved to live her life! Again and again, I have no choice but to face the obvious: that this is the hand I've been dealt and there's nothing I can do about it. I wonder, is this my new reality? For the rest of my life, will good times always come with a pang (to say the least) of sorrow? I think so. I guess I can live with that.

You all don't know me really, but I'm (mostly) a pretty together person. I'm very even-keeled, not at all dramatic and pretty damned task oriented. I set goals and work to accomplish them. I face problems and try to solve them. Which is not at all to say that I always succeed. I'm just saying, perhaps poorly, that I would usually describe myself as high-functioning under most circumstances.
So, how has that served me over the last 4 months since I lost Samantha? Well, my usual approach to trying to solve problems, trying to fix things, clearly hasn't worked out very well. As I've already said, I keep coming back to the highly disconcerting reality that I am powerless to bring her back. It's done. It's a painful reality every single time. I'm not good with accepting that kind of thing.

So as I look back on my actions in the wake of Samantha's death, I can see that I've attempted to control other things, things I do have some say in. Like working out. I'm way more fit than I was 5 months ago. I'm running and doing Pilates and lifting weights. I do like that I'm in better shape. And working out, especially running, is therapeutic for me. It's my Samantha time. I usually run down to the Potomac River. And once I'm there, I always throw a stick in for Samantha, and sometimes say a few words aloud to her (or the universe at large) before heading back. When the going gets tough and my legs start to hurt and my lungs feel like they're on fire, I think of her. In a bizarre kind of way it feels good to have physical pain match by internal pain. It just does.

I've also tried to be a more “present” parent. God knows in the really early days of losing Samantha I was not at all there for the other kids. I was pretty much reading online blogs, turning on the tv for the kids and generally muddling through. I'm fortunate to be surrounded by an amazingly supportive network of friends who took my kids on outings and playdates and other things to give my some alone time. And my husband has been ridiculously supportive. He has taken the kids a lot on weekends to give me the time and space I need to deal with this. (And I'm not just writing that because I know he'll read this at some point.) Anyway, I've tried to be a better parent. Trying to plan more outings for them and give a little structure to their days rather than just letting things unfold as they do. They've responded well and, mostly, we're doing pretty well.

And now I'm a little obsessed with music. I'm listening to more music again - especially through Pandora which is a great way to hear new music. No question about it, music moves me. I think it helps me heal. I've gotten out my guitar and started playing a bit again, too. I'm not good, mind you, but I can play the basic chords. The kids like to sing along (even when the lyrics are ever so slightly inappropriate), so it all feels very much like a Norman Rockwell childhood kind of existence. You know, except that it's been the worst year of our lives.

Somehow I ended up on Facebook, too, which I was hesitant about at first. There are of course plenty of awkward exchanges: Hey Alyssa, haven't seen you in years, how've ya been? Me: well, it's been a horrendously shitty year, but we're doing ok. Yeah, it's hard not to be a downer. But it's been nice to catch up with people, too.

Sometimes I think, what was I doing before? How do I have time for all these new (re-discovered) interests? The answer, of course, is that I'm NOT taking care of a (what would have been) 17 month old. I think I've written about this emotional dissonance before. I don't know how I'll ever reconcile it. I'm happy for the time and opportunity to pursue more of my own interests. But the price I've had to pay for this opportunity...., well, it's not a fair fight. I want my baby back.

Anyway, it feels good to write again. I don't know how often I'll update this blog, but I do find great value in just getting these thoughts out of my head. And this blog provides a handy forum for that, even if I'm not sure many people are actually out there reading it!

Wednesday, April 29, 2009

A Harrowing Trip Down Memory Lane

One of the moms I connected with in the PICU back in December is back in the PICU right now following the second of her daughter's three heart surgeries to correct a heart defect. We have kept in touch a bit since December, so she she has included me in her “Care Page” updates regarding her daughter's recovery. It's bizarre to be on the receiving end of a Care Page. During Samantha's 5 week ordeal at the hospital I kept up a Care Page and wrote updates almost every day. Much like blogging, it was therapeutic (though sometimes very difficult) to write every day. We had a large network of friends and family who were eager for each day's news and wrote kind and encouraging messages to us on the site. It helped a lot to feel their support.

Anyway, it's a bit of a harrowing trip down memory lane to read my friend's Care Page updates. Sadly, her baby is having a lot of complications, and it's definitely a struggle for them. Of course, I know just how that feels. It brings back all of the emotions and turmoil of that roller coaster ride. One day things look like they might be ok, the next day, it's a nightmare. It's hard to watch them go through this, but at this point, I'm pretty vested in their story. So I'm on the Care Page every day as soon as I get an update notice. I've emailed a bit with the mom, too, trying to offer my support and encouragement. I think it has helped her to connect with me, though there are times I'm thinking she might wish she did NOT know our story. I don't think I would have wanted to know our story. I certainly can't say things like "I'm sure everything will work out fine!" with any kind of plausibility. I'm living proof that things don't always work out alright. Anyway, she's reached out to me, so I'm assuming she's not completely spooked by our misfortune. Still, it's an unpleasant trip down memory lane for me and a good reminder that infant (or any) heart surgery isn't something to take lightly. You know, just in case you were thinking it sounded like a lot of fun.

Oh, and I'm pretty much on the verge of rushing each of my three children to the ER at the least sign of swine flu....

Saturday, April 18, 2009

Sisterhood Award

Jessie at The Encouragement of Light blog has nominated my blog for the Sisterhood Award. Jessie writes a beautiful blog about the loss of her son Sage (as well as her father) and has introduced me to a whole world of poetry I didn't know existed. Thank you, Jessie.

The rules of the award are that I now have to nominate 10 blogs for this award. So here are my nominations, in no particular order:

CharmedGirl at a charmed life?

Tash at Awful But Functioning

Erica at I Lost a World

Jessie at The Encouragement of Light (I know. She nominated me. But it's a great blog, so I'm nominating it right back!)

Gal of growing inside

Jen of there's a new monarchy in town

Lani of elm city dad (well, really Chris too, but can a guy get the Sisterhood Award?)

Antigone of antigone lost

Caitsmom at A Fifth Season

Monday, April 13, 2009

Turtle Talk

Ever since Samantha died, I've been living in dread of how I would respond when someone asked me how many children I have. I don't know how to respond to that question, and I know many of you struggle with this one as well. To say “three” is to betray Samantha and her very existence. To say “four” opens up a whole line of uncomfortable conversation I don't always want to get into. Of course, it depends who's asking the question. And it's complicated by the fact that I wear a necklace with four small baby shoes with the birthstones of each of my children. I never take it off. It's pretty obvious that it signifies that I have four children. Back when I had four living children, it was a fun conversation piece. I didn't even get it until I had Samantha. I would always say, “Damnit, if you're going to have four kids, you may as well show it off with a necklace!” Now, I admit to hiding it under my shirt at times if I just don't want to go there or I sense that someone might ask about it.

Anyway, incredibly enough, no one has asked me that question - how many kids do I have - in the last 3 months. I've waited. I've dodged dicey conversation topics. I've covered my necklace. But it's never directly come up until, last week that is. We took the kids to a much needed vacation to Los Angeles (actually, Monrovia, a small town to the north and west of LA) to visit family, hit Disneyland and enjoy the glorious California sunshine. It was a good time. One of the attractions at the park was called “Turtle Talk”, which basically involved a computer animated Crush (from Finding Nemo) talking on a giant screen and interacting with the audience. So can you guess who the very first kid he pulled out of the audience was? It was my oldest daughter, who was sitting in the front row. He peppered her with a series of questions about where she is from and if we do much surfing in Virginia. She's not one for the spotlight, so she basically turned around and looked to me (sitting right behind her) for the appropriate answers to all these questions. Eventually, Crush the turtle decided to question me directly, seeing that I was answering his questions anyway. He gets my name, and then his very next question, I kid you not, is “So, Alyssa, how many kids do you have?” Let's see, I've been dreading this question for almost three months, and the moment it finally gets asked, I've got a microphone in my face and an expectant audience awaiting my response. I had to laugh at the absurdity of it all. I answered “three” opting to avoid telling the whole sordid story to my fellow Disneyland vacationers. His response (remember, this is in the character of Crush, the prolific sea turtle) was “Dude, you're just getting started! You should try 65!” Ha ha ha.

So there it is. In a way, it's a relief. I've been dreading the big question, and it finally came in front of my new 200 best friends at Turtle Talk.

Monday, April 6, 2009

7x7 at Glow in the Woods

Glow in the Woods is a site I visit often. Periodically they post a series of 7 questions and have their writers answer them. You can read their answers and post your own here :

Here are my answers:
1 Give us a few words you would have used to describe your body, your health or your sense of physical vitality before the experience of babyloss—and a few that you’d use to describe it now.

Before: Out of shape, still carrying the final 10 lbs of baby weight I never lost. Now: Getting more fit every day.

2 What do you do to take care of yourself? Has this changed?

Probably the number one coping mechanism I've learned in dealing with my grief is to work out. I somehow never lost my baby weighter from having Samantha, even 11 months after her birth. Now, I'm running again, which is something I haven't done for over 7 years, since my first daughter was born. I'm loving it. I think of my running time as my Samantha time. I listen to my ipod, think about her and work through the pain.

3 Give us one or two words to describe sex or physical intimacy before, and then after the loss of your baby.

Before: infrequent (we had 4 kids 6 and under!), but fulfilling. Now: very conflicted for me at first, but getting better.

4 Has loss and/or grief left a physical mark on you (a scar, a chronic condition, insomnia, a tattoo)?

Oddly enough, after my 4th (and last) c-section, my doctor treated the incision with something that left virtually no scar. I don't know how I feel about that. I have plenty of stretch marks though, which are kind of depressing. I also don't sleep as well as I did before.

5 Do you medicate or control your emotions with food, wine, altered states, prescriptions? Without judgement, what have you gravitated towards in an effort to heal, and how do you feel about it?

There has been no shortage of red wine and other beverages. Oh, and super dark chocolate is a daily indulgence. For a while I totally relied on Xanax to wind down and fall asleep, but that's becoming a bit less necessary with time.

6 Was physical healing important for you in the first year after your loss? What did/does physical healing entail and how did/do you work towards it? If physicality hasn't been a priority for you, what do you do that makes you feel stronger or more able to cope?

I'm still pretty early in the first year. I guess it became very important to me to finally lose the baby weight and reclaim my body. Not that I want to forget Samantha or the effect she had on my body in any way. It's just that I've literally been pregnant or nursing for most of the last 8 years. At some level, I'm revelling in the freedom of owning my body. Also, having been through this kind of loss, I fully understand that there is much in life we can't control. I guess I want to control how I treat my body because I can.

7 If you could change anything about your body and/or health, what would it be? What would it feel like to be either at peace with your body, or at peace with this babylost state?1 Give us a few words you would have used to describe your body, your health or your sense of physical vitality before the experience of babyloss—and a few that you’d use to describe it now.

I'd get rid of the stretch marks for sure. Peace with this babylost state? I doubt it. Acceptance? Do I have a choice?

Saturday, April 4, 2009

Heavenly Day

Tomorrow (April 5th) would have been Samantha's 15 month birthday. It's one of my all-time favorite stages: toddling around, maybe saying a few words, understanding more and more every day.

Today I mourn what will never be. I celebrate the 15 month old Samantha who lives only in our imagination. And yet my love for her is undiminished. It lives on, kept alive by purposeful acts of remembrance, as well as the many, many events that occur hourly (minutely?) that remind me of her presence and of course, her absence. There are moments of joy in my life, and for that I am grateful. But those moments are always, always accompanied by a painful realization: Samantha should be here with us.

I've put together a little video montage of some footage from her one year. It's got plenty of shots of my older children, who absolutely love to watch themselves interacting with Samantha onscreen. My son yells "again!" as soon as it ends.

I set the footage to a song by one of my favorite singer/songwriters, Patty Griffin. I love the song "Heavenly Day" and have found it to be a good way to think about our year with Samantha. Some lines are particularly meaningful:

"The smile on your face, I've been longing to see.
It's enough for me, baby. It's enough for me."


"Tomorrow may rain with sorrow,
"Here's a little time we can borrow."

Tomorrow did indeed bring a deluge of sorrow. 2008 was a hard year for us. As I mentioned in my last post, we were dealing with the loss of my brother and spending a lot of time with doctors trying to fix Samantha's heart defect. But it was also a wonderful year in many ways. It was the *only* year we had with Samantha, and so it means everything to us. As Dickens so aptly put it, "It was the best of times, it was the worst of times." That about sums it up.

Wednesday, April 1, 2009


So I used to think of myself as lucky. Insanely lucky. I have this great husband. We are the rare high school sweethearts who are perfectly compatible. Then and now. Really. And I had a great childhood; can't complain at all. I had three beautiful kids. Each of them healthy and happy and just a huge joy in our lives.

Enter 2008. Did I mention that my brother committed suicide three days before Samantha was born? He went missing on January 2nd, but his body wasn't found until later that month. Yeah, that's a whole other post (or series of posts) in and of itself. For now, I'll just say it came as a huge shock to everyone who knew him.

So, here's the timeline for our start to 2008: January 2nd, we find out that my brother kissed his wife goodbye that morning as if he was going to work, then was never heard from again. January 4th, I go into labor three days before my scheduled c-section (this being my fourth). January 5th, Samantha is born. It was a bit of a blur. It was such a weird and difficult time. Not many people from my family were able to come see her when she was born because they we dealing with this giant shit-storm, searching frantically for my brother.

I worried at the time that Samantha's birth would always be tainted by the events surrounding my brother's death. Still, having her, holding her, loving her, helped me get through that otherwise awful time. As I did with my first three kids, I fell head-over-heels in love with my new baby right there in the maternity ward.

Then, at one month, just a week after my brother's funeral, we found out that Samantha had a large hole in her heart. That she would have to undergo open heart surgery to correct it. That until it was fixed she would have a hard time gaining weight. That because of all this, she would need medications to help regulate her breathing, which would become labored and too fast over time.

Well, call me naively optimistic, but I still didn't worry *that* much. The doctors swore that this is the most common and easy-to-fix type of heart defect. Sure there were risks, and yes, her hole was on the large side of large, but I figured we'd get through the surgery, get her heart fixed, and move on with our lives. Oh how wrong I was.

As I've written in my bio and numerous other places, her surgery didn't go as well as it could have. Samantha got an infection, and was one of the unlucky 5% of babies who need a pacemaker after this type of open heart surgery. Still, the pacemaker was just to correct the rhythm, and I trusted the doctors when they said it wasn't that big a deal. Really, I trusted them. It did make me nervous that her heart was dependent on a man-made (battery-operated!) device, but I mostly believed it would all be ok. I figured in another 10 years medical technology would have found a way to correct her heart rhythm in some other way and it would all be just fine. Oh how wrong I was.

Even at that point, I still mostly thought of myself as a lucky person. Then, on December 10th I watched a team of doctors perform CPR on my daughter as she went into cardiac arrest. They told me, if you're going to go into cardiac arrest, a hospital is the place to do it. She was surrounded by doctors and hooked up to monitors when her heart stopped. Of course they could revive her, right? That's what doctors do. Well, they did get her heart beating again and put her on a breathing tube. But the damage was done. Severe brain injury, combined with an enlarged, non-viable heart. She was one of the rare cases where surgery to correct the hole didn't work out as it should have. No one really understands why.

I have not felt lucky since the cardiac arrest. My baby died. She defied all the odds (you know, in the exactly wrong way), and now she's no longer with us. I still feel fortunate to have the family that I do. I wouldn't trade places with anyone. But losing a brother and a baby in the span of 13 months? I kind of feel like this was retribution for the first 35 years of my life that passed relatively crisis-free. Can we please call a truce? I have no more room for tragedy in my life. I'm not a lucky person any more.

Saturday, March 28, 2009

A memory quilt

I've decided that I would like to have a quilt made out of some of Samantha's clothing and blankets. My grandmother (hereafter known as “Nana”) does a lot of quilting and in fact made a quilt for each of my kids when they were born, including Samantha. So I asked her if she'd be willing to make a quilt for me, and she readily agreed to take on the project.

Last week I went through all of her clothes and carefully chose the items I wanted to be part of the quilt. I saved a few outfits that I wanted to keep intact, particularly the outfit she was wearing when she passed away. I also wanted to save her “lovey”, the little blanket-toy-thing she slept with. But there are many other great candidates for the quilt; lots of clothes that I remember her wearing that really make me think of her. We even decided we could use parts of her crib bumper and crib skirt for the quilt. I think it will be a meaningful project for my Nana and a wonderful keepsake for us.

Today my Nana was visiting for my son's birthday party (he turned 3 today). While she was here, I went through all the clothing with her and handed it over so she could begin work on the quilt. It was nice to spend time with her sorting through Samantha's clothing and sharing memories together.

But then a few hours later I realized I just wasn't ready. I got panicky just thinking about the fact that I would never see that clothing, as it is right now, again. And I just couldn't do it. I had to have the clothes back. Of course my Nana doesn't want to rush me, and really there's no hurry with this project. As much as I know I will love the quilt, it doesn't have to be done right now. I'm not ready to part with her clothing just yet. It just feels too final. You know, as if her death wasn't final enough.

Wednesday, March 18, 2009

Bad news, shouted across an intersection

Today I was walking in the neighborhood with my son in the stroller when I saw someone I knew in a car at the intersection. I hadn't seen her for, I don't know, probably a year, and really didn't know her all that well.

Anyway, when she saw us, she rolled down her window and asked if that was Samantha in the stroller. I knew immediately this wasn't going to be an easy conversation, but I attempted to end it quickly. I shouted across the intersection that no, this wasn't Samantha, it was my son Charlie who was almost 3. Then I tried to start walking again. She persisted, “How is Samantha doing?” Fuck. This is problematic. My only choices were to lie (fine!) and hope to never see her again or shout the truth across the intersection.

I had to go with the truth. Pause, pause, “Um, actually she passed away”. Her response was, of course, horrified shock. I hate this. I'm totally fine with talking about Samantha. Almost anytime. But what I really hate is breaking the news to someone. It's just so awful. It's a little like reliving the horror of it all again. And the person finding out the news is always traumatized. Hell, I'm vaguely traumatized at having to spell the whole thing out again. I just hate it. It wasn't her fault. It was a kind and thoughtful question. Just one I'd prefer not to answer anymore. Maybe I could just make a sign for these situations.

Today is the 18th - two months since Samantha has been gone. I'm pretty sure these have been the longest two months of my life. And certainly the worst.

Sunday, March 15, 2009

Big brother

I never expected to gain so much pleasure from watching my kids interact with each other. It's great fun to see them forming relationships with each other, apart from us, their parents. Losing Samantha means losing some of those relationships, too. My son was an amazing big brother to her. He's a very gentle boy (perhaps because he was surrounded by sisters) and tried so hard to be loving and gentle with Samantha. He didn't always succeed. He was frequently, accidentally too rough with her (and sometimes not so accidentally).

His relationship with Samantha was heartbreaking because he really did love her, but she usually assumed he was going to hurt her. She would sometimes cry in anticipation of him touching her as if to say, “I know where this is going and you're not going to get away with it!” Fortunately, he was oblivious to this dynamic. He would comment that Samantha was crying, never realizing that it was because he was too close. Heartbreaking. She did enjoy watching him from a safe distance and definitely appreciated his playful antics. He's a funny guy. And he's very attentive when we visit anyone with a baby at their house these days. He really does love babies. It's very hard for me to think that he'll never get to play the role of big brother again. He was a good one.

Wednesday, March 11, 2009

Carrot stains and other permanent damage

My hubby and I have discussed this ad nauseam: in his mind, Samantha lived a very good life. And he's right. If you don't count the time spent in the PICU (8 weeks total), her 12 months were very good. Great even. She was surrounded by a very loving family and was doted on by three adoring siblings. She died before she even knew to fear death. She died in my arms, her mother's arms, heavily dosed with morphine. She didn't feel a thing. What better way is there to go? Really, her death was peaceful and beautiful.

But forgive me for not celebrating this fact. I can't help but dwell on the fact that she was robbed of a full life. We were robbed of really getting to know her. My son was robbed of being a big brother. My daughters were robbed of their baby sister. I was robbed of my baby! I'm not ready to be past the baby stage already.

Today I opened up Samantha's dresser drawers for the first time since December and noticed that one of her onsies had accidentally been put away dirty way back when. I could see the tell-tale signs of baby food carrots and a few other unidentifiable bits of food on the collar. It was a very tangible reminder to me that she was here, she was alive and present in our house, and not that long ago. I looked through all her clothes and held some of my favorites up to my body, just trying to feel what it was like to hold her. How my arms ache just to hold her again. It's an actual physical ache.

I admit to treating my almost three year old son like more of a baby than I should. It's just that, well, I don't have my baby anymore, and he's the next closest thing. I sometimes carry him around when he should clearly be walking. I dote on him more than is probably good for him.

Oh, and he's responded willingly to this “babying” and has begun affecting a new “baby voice” from time to time. He's perfected the most annoying 2 year-old-speaking-baby-talk you can possibly imagine, so I guess this is my payback for treating him like a baby. I just hope the damage to his psyche isn't permanent.

Friday, March 6, 2009

Mundane memories

So many of the parents in the baby lost world never had a chance to meet their children before they died. I am so grateful to have had Samantha for the year that we did. There were a lot of great memories. There were plenty of bad memories when I add up the grand total of 8 weeks she spent in the PICU. But the good times were so good.

I'm distraught at the idea of forgetting things about her. Already, I know her memory is fading in my mind. I can still imagine the perfect smell of her head, the way she felt in my arms when I rocked her. For a while I saved one of the last outfits she wore at the hospital and would breath in its smell, her smell, every day. But sadly, that smell has faded from the outfit, which is just killing me. I feel desperate to hang on to everything that reminds me of her short life.

There are so many other things I want to remember, too. Like the fact that she frequently would “dive” for her crib at bed time. I would always sing the “Rubber Duckie” song to her right before bed, replacing the words “Rubber Duckie” with “Sweet Samantha”. Usually before I got to the end, she was bending away from me and leaning toward her crib. Of course, sometimes she would cry to be gotten back out 2 minutes later, but I always felt like she really did like her crib.

Samantha was never what you would call a great sleeper. She did have a brief period from the age of 4 months up to 5 months when she discovered tummy sleeping, and she did manage to sleep through the night from time to time. But then she had her first heart surgery at 5 months and spent the next 1 month solid on her back recovering. She would never again go for sleeping on her tummy. And she never really slept through the night after that either.

She was the only baby of my four children who would ever agree to taking a bottle. And I think that was only because we really forced it on her. She had a lot of trouble gaining weight before her VSD was fixed at 5 months, so we spend a lot of time trying to get extra calories into the poor kid. In addition to regular breastfeeding, I pumped several times a day, then supplemented the breastmilk with formula for a super-rich concoction.

She was never a ravenous baby. Her three older siblings seemed hungry all the time as babies and basically would nurse any time the breast was offered. Not Samantha. She was always picky about eating and really never seemed all that hungry. In retrospect, I'm sure that had a lot to do with all her heart troubles.

She ended up weaning by 8 months old. I think she preferred the ease of the bottle compared to nursing. It broke my heart to have her stop nursing so early, but I admit to enjoying some of the freedom that gave me as well. It was a lot easier for me to get out of the house knowing I could leave her with a bottle. And my husband shared night-time feedings with me once she went totally to the bottle. It was nice to get a good night's sleep every other night. And my hubby didn't mind the feedings much since she was the only baby he was able to feed. It was good bonding time for them. I also mostly enjoyed the night-time feedings (mostly). Because she was my fourth, I was fully aware of just how fleeting those baby moments would be. I definitely remember trying to appreciate and absorb her sounds, her feel, her smell. I'm so glad I did. Both of us are grateful for that time we had with her because the nighttime feedings were some of the only times we had one-on-one time with her. Now that we know how the story ends, I'm so glad we never did the whole cry-it-out thing with her.

These are just some of the memories I have of her. I know it's not exactly riveting to read mundane memories from her babyhood, but I really need to get these memories written down before I forget them. They mean the world to me. Thanks for understanding.

Wednesday, March 4, 2009

A picture from last fall

Just testing out how to post pictures on this blog. This one is from October.

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Sunday, March 1, 2009


My kids were each born just short of 2 years apart. So before now, I have never had an almost 3 year old child (which my son is now) and *not* had a 1 year old baby to take care of as well. In fact, it was usually around this time in the sequence that I got pregnant with the *next* child. So I'm kind of used to being pregnant and having multiple small children around.

Well, it has been a whiplash-inducing change for us to go from having 4 kids, with the youngest not yet a year old, to suddenly, unexpectedly having just 3 kids, with the youngest almost 3 years old. It's hard for me to even write, but the truth is, logistically, our life is a lot easier than it was before. Emotionally, it's much more difficult because of all we've been through. But feeding, clothing, and bathing them are just simpler tasks without a baby thrown in the mix. The kids are all fairly independent at this point and can play together or entertain themselves pretty well. They really don't need me in the same way that a baby needs her mom.

And this whole concept -- this not being so needed, this having more free time -- fills me with all kinds of conflicting emotions. It IS nice to have a little more time to myself. It IS good to be able to spend more time with my older kids. We can leave the house without a stroller and a diaper bag. We can go on morning-long outings without worrying about naps. We can go to a museum and see more than one exhibit!

But my mind recoils at even reading these words that I've typed. Yes, in a way I'm happy for all of these unexpected developments. But of course, I would give them all back 1,000-times to have Samantha with us again. Yes, we gained some new freedom, but the price for that freedom, well, it was unspeakably high. My baby had to die for us to have this freedom. Not worth it. Not even in the ballpark of worth it.

Monday, February 23, 2009

Regrets and what-ifs

I know it's pointless. I know it will make me insane. I know it will never get my daughter back. But I can't help the thoughts, the doubts, the regrets, the what-ifs.

The day before Samantha's original open heart surgery in June of '08, she kind of had a “goopy” eye. We didn't think much of it since none of her siblings showed any signs of pink eye. I told the surgeon about it at her pre-op appointment and he said we would probably just go forward with the surgery as scheduled. And the truth is we were relieved. Really. We had spent so much time waiting, worrying, and lining up all the arrangements to make this happen, that we just wanted to go through with the damn surgery!

Well, as it turns out, her slightly goopy eye was a sign of an infection that goes by the name H-Flu (non-typal). Somehow, the infection in her eye made it into her bloodstream and caused a pretty frightening infection in her chest cavity after her surgery. So, I can't help but think, what if her original surgery had been pushed off because of her eye infection. She wouldn't have gotten the horrible infection in her chest. Nobody can say exactly what caused her cardiomyopathy, but it certainly could have been the original surgery or the subsequent infection. Maybe, if we had waited until her eye was clear, she wouldn't have ended up with severe cardiomyopathy 7 months later

Or how about this? What if I'd taken her in for an echo cardiogram before December 9th? She was scheduled to have hers done in January. One month too late. What if we'd just put all the clues together - the decreased appetite, the slow weight gain, the slightly delayed gross motor skills. What if I'd taken her to the cardiologist with that list of symptoms and said I thought something was wrong? Where were my motherly instincts? Maybe, just maybe, they would have discovered her enlarged heart before it was too late. We'd still have a big problem, of course. Her heart was on a collision course with disaster any way you look at it. But still, if we'd just avoided cardiac arrest, we would have avoided brain damage (not to mention an image seared in my mind of doctors performing cpr on my baby girl). No brain damage would have meant we'd be talking about a heart transplant, rather than withdrawing life support.

What if someone had discovered her enlarged heart while we were at the hospital, but before the arrest? Which is funny, because someone kind of did. When I took her in to the ER on December 9th, they did a chest x-ray and the ER doctor immediately came in, looking a bit alarmed, and asked me if she normally has a large heart. My answer, was a resounding “no, she does not.” So he flees the room “to call her cardiologist.” An hour later he comes in and tells me that he looked at prior x-rays of her heart from 6 months ago and that she DOES have a large heart. He actually said “that's something you should know.” Now, I did question him at this point because I am the kind of mom who would know that if it were the case. But after questioning him again, he insisted that no, her heart is normally large. Nothing to worry about here. Sidebar: we later found out he was looking at an x-ray from right after her original surgery when it was a bit swollen from the operation. Fucking idiot.

Amazingly, and this really speaks to my ridiculously naive optimism, I believed him and completely forgot about the whole incident. I really did believe him when he said her heart is fine and that her problem was just bronchiolitis. It literally wasn't until I saw the line on the screen go flat and heard the doctors say “start chest compressions” that I remembered the whole enlarged heart discussion from the day before. It all came flooding back, of course, just too late. Oh how I wish I'd just mentioned it to even one doctor once we got to Fairfax on the 9th. Maybe we could have averted tragedy.

Like I said at the start of this post, intellectually, I know it's pointless to even go down this road of what-ifs. Intellectually I know I did the best I could. I am a good mom and I loved Samantha unconditionally. Still, I can't help but think there were at least a few ways to avoid losing her. We just missed them. Every single one of them.

Saturday, February 21, 2009

My top three list

Today I'm thinking about all the joy that Samantha brought to our lives. She was the perfect fourth baby in many ways (with the notable exception of a pesky heart defect). So happy just to watch her siblings play around her. So happy to sit at Bertucci's (yes, we were crazy enough to occasionally venture out to restaurants with four kids!) eating little bites of pizza while we tried to control the chaos of her three older siblings. So happy to listen to the book “From Head to Toe” again and again and act out each page along with her brother and sisters.

And nobody loved a grocery store outing like Samantha. Maybe because she could sit in the grocery cart face-to-face with Mommy, just out of grabbing range of everyone else. Grocery stores aren't any fun anymore. I'll leave it at that.

I've poured myself into the world of online baby loss blogs as a way of coping with this loss. I think only a person who has experienced the hell of losing a child can truly appreciate these kinds of blogs or even understand why they might make for good reading. Me, well, I'm drawn like a moth to the light. Can't stay away. I'm frankly amazed and horrified by how many sad stories there are out there. It's a good thing my tubes are tied, because I can't even fathom the possibility of trying to get pregnant again now that I know how much can go so, so wrong.

I've been writing a lot, too. It helps me process all that has happened since December 9th. I'm already so scared that I'll forget things about Samantha, the details of her life that can easily fade into the blur of a sleep-deprived year in a house with four young kids. I want to do everything I can to keep those memories alive. Writing helps. I could fill up this entire post with the things I miss about her. But really, just to hold her in my arms again, to touch her perfect, soft skin, to smell her sweet little head, well, I think those would make my top three list.

Tuesday, February 17, 2009

One month ago tonight

It was one month ago tonight that we were holding our daughter Samantha after electing to withdraw life support earlier that afternoon. The doctor pulled the vent out at 3:30pm on January 17th and we held her in our arms for the next 16 hours. She took her last breath at 7:40am the next morning.

It felt so good to hold her for those 16 hours. She had been in a PICU since December 10th when she went into cardiac arrest. From that day on, she was connected to many, many tubes and wires. I'll share the details of all that some other time, but suffice it to say, holding your baby when she is attached to that many lines isn't as enjoyable as it could be. For one thing, it literally took a team of three nurses to move her into my arms. Then there was the inevitable, excruciating five minutes or so where poor Samantha looked highly uncomfortable and not at all happy to have been moved from her hospital bed. After we settled into a comfortable position (and the nurses would hit her with more meds), it was very nice to hold her. There was the constant threat that the breathing tube would be knocked loose (and it was once), but otherwise, it was good.

But on January 17th, all of that was gone. Finally, we had our little baby again. No tubes. No wires. And the freedom of this! I could walk around our PICU room, casually hand her to her dad, hold her in any position I wanted. Even on my shoulder, if I so desired. This is crazy to say given the circumstances of it, but I don't think any other baby-holding experience comes close. Holding each of my other three children as babies was wonderful, don't get me wrong. And I do remember the shear joy of holding each of them for the first time when they were born. But really, having been deprived of holding Samantha in a normal way for 5 long weeks, finally holding her again was, well, it felt almost zen-like.

Those 16 hours after withdrawing support were one hell of an ordeal. The first five or six hours were quite good. Great even. Samantha seemed to be breathing comfortably, and she almost looked like her old self again, just a lot sleepier and floppier. We had been prepared for so much worse, that both hubby and I were overwhelmed with relief with how well things were going. I admit I even had fleeting thoughts that maybe she would miraculously survive. Wait, wait, doctor error! Your baby isn't really sick at all! But no, things were to get much worse, of course.
Her breathing got labored. Her lungs started sounding like they were filling up with fluid. Because they were. It got really, really loud. It was hard to listen to. The nurses were generous with the morphine, and we were quick to request it for her. So I don't think Samantha was in any pain. She definitely didn't look at all pained. But the noise, oh the noise. And it went on for so long.

By 4am hubby was taking a snooze, so it was just me and Samantha and the soothing music I was playing continuously from my laptop. I finally asked the nurse to get the doctor. This doctor, one of my my favorite in the PICU was unbelievably kind, patient and compassionate. She came into a dark room at 4am, with a mother holding her dying baby in her arms. Would you want to face that mom? With tears in my eyes, I asked her if the noise of Samantha's breathing was as expected. It was. I asked how much longer she could go on like this. It could be a while. Then she reassured me yet again that our baby wasn't in any pain, that the parts of her brain that would even register pain or fear were probably no longer working. Then she just sat quietly with me, tears in her eyes. She has young kids of her own, so I know it was hard for her to be there. But I'll be forever grateful to her for the time she spent with me.

Eventually, I needed to close my eyes, and the nurse managed to wrangle us a larger hospital bed, one that Samantha, hubby and I could all snuggle together in. I managed to sleep for the next few hours, feeling confident that the nurses would monitor her progress and wake me if things got much worse. I remember clearly waking up a little after 7am, slowly realizing with great sadness and dread where we were and why. The nurse said Samantha's breathing was getting more sporadic. I quickly picked her up and woke up my sleeping hubby. Not much time left now.

I held her as we both watched, holding our own breath, just waiting to see if she would breathe in again. But eventually, she didn't. There was no gasping or any of the other scary things the doctors warned us might happen at the end. She just looked peaceful, and really, it was and still is hard to even comprehend. After about 10 minutes of just sitting, quietly watching her, hubby called for the doctor who gently confirmed what we already knew. Our baby, this child who captured our hearts in so many ways and endured so much in just 12 months, was no longer with us.