Just sad.

So this article was published last week. Ever since I've read it, I've felt nothing but guilt and sadness. Trying to not beat myself up. Trying to be okay with our decision. Knowing that this situation wouldn't have happened to me in March, even if I had went with a second opinion. I have to remember I was offered a second opinion to ensure they were reading the ultrasound right. Not to see what else could be done. The diagnosis for us was fatal. But it stings. And then I think, "Jennifer. Stop being so shitty. Start being happy for this couple. Stop being jealous that she got to go to John Hopkins and tried an experimental procedure. Just STOP IT!"  .....and then I do. ....and then it slowly starts up again.

Here's the article: Baby Survives Potters Sequence

*Note-I should add that I hate that they're calling it Potter's Sequence. The baby's condition was Bilateral Renal Agenesis (BRA). That is what she is surviving. Potter's Sequence is an old term that's used to describe the physical appearance of babies that have low amniotic fluid (Oligohydramnios). In this situation I would say it's probably more accurate to assume that this baby did not have Oligohydramnios, and therefore did not have Potters Sequence (or at least they reversed it), as the mother was getting the faux fluid. But it is a crazy scientific development that this baby is surviving BRA outside the womb. I don't know. I'm not a doctor. 

Anyway, James has his renal ultrasound this week to find out if he has 2 kidneys or 1. This will solidify what our chances of recurrence are, depending on how many his has cooking up urine.

When does this nightmare end? I guess it doesn't. Because I haven't woken up in 4 and 1/2 months.

I need another word for sad.

I feel like I've just  been walking through the grief-haze for the last week. That haze where you can't remember 3 seconds ago what you said or what you were doing. But somehow you're still semi-functioning. I think I owe it all to Lorazepam. Well...probably not all of it.

Yesterday was another terrible day for me. I had to leave work. This is the 2nd day this week I haven't been able to keep it together. I am so profoundly sad. The depth of it is infinite. It's as though there's an empty hole going straight through my chest that is filling with sadness. But instead of the hole opening up to the other side into my back, it never makes it there. It just grows deeper somehow. And there's no relief. I feel as though it's going to fill my entire body and soon I'll be drowning in it. A deep, dark sadness.

I feel like maybe if I say, "I miss her" over and over again to you, that you'll understand how much I do miss her.I miss her, I miss her, I miss her, I miss her, I miss her....is it easier to understand now? Probably not, but I don't know how else to describe what I am feeling for my child. For Astrid. That's where this empty hole in my chest is coming from . Because I don't have her to hold and love, I'm not complete. There's a movie coming out that spotlights child loss and it's called Return to Zero. There tagline is 3-1=0. That equation seems so right for this situation.

The quietness in the house is haunting me. It's so still this morning just like the still sadness inside me. I miss Astrid so incredibly much. If you could only know how much I long to hold her in my arms just one more time. Even if it wasn't forever...just once more.

Me vs You

I'm back. I need to stay back too. This is where I belong. I can't keep all these thoughts to myself. I want them written down for others to stumble upon. I want them written down so I don't forget my pain.

I've been sitting here with an aching heart this morning. We're less than two weeks away from Astrid's due date. That date is haunting me this month. I'm sitting here with this cloud of grief around me, wondering what it would have been like had everything gone according to plan. Would I have been miserable and ready to just have the baby already? Would I have been elated just waiting to meet my child? Would the nursery have come together as planned? What would the rest of my pregnancy been like? My heart just breaks right now because I was supposed to know the answers to all of those questions. Instead I know the answers to questions like: What if something goes terribly wrong with this pregnancy? What if my baby has a condition that's incompatible with life?

My reality now is a pill that's almost impossible to swallow.

I should probably update those of you that pop in here to read and check in on us. We found out that Astrid did not have any type of syndrome associated with the bilateral renal agenesis. She was a healthy normal baby, except she had no kidneys and no bladder. The geneticist said they have about 1500 births in their hospital a year and they see this happen once every 3 to 4 years. We won the shittiest lottery in the world. The next step is to find out if James has both of his kidneys. If he has both kidneys, there is a 4-9% chance we'll experience this again. If he has one, there is a 10-15% chance it will happen again. Although I'm relieved that there is no syndrome associated with her condition, the rest of the information provides little comfort.

Some other things that have occured to me as of late are the differences between myself and those around me. Before I rant about this next part, please know that when I say "you", I'm not referring to the other baby-loss mamas that might be reading this. My rant starts now:

Me: It's only been 4 months.
You: 4 months is an eternity ago.

You: You must not be grieving. I saw you smile and laugh yesterday
Me: Don't let smiles and moments of happiness fool you. You can't see my heart.

Me: I think about my baby every. single. day.
You: You don't even remember that I was pregnant.

You: If you're having a hard time now, it must mean you're going backwards.
Me: When I'm having a hard time it's because I don't have the strength to go on ignoring my pain. Part of having a hard time and letting myself feel my grief and pain means that I'm healing.

I just have this feeling that my friends that don't know loss and don't know grief are thinking that I'm milking this. I just want to scream some times, "I HELD MY DEAD BABY IN MY ARMS. CAN YOU EVEN IMAGINE WHAT THAT'S LIKE????" But to them, it shouldn't be that hard...it's not like I knew this baby. It's not like the baby took a breath. It's not like the baby ever loved me back.

....Yet, maybe it's not what they're thinking. Maybe it's just what I assume they're thinking. Maybe it's what I'm subconsciously thinking? Maybe deep down I'm being hard on me and think I should be over this. Maybe this isn't Me vs. You. Maybe this is Me vs. Me.

I'm so sad. This is so hard. I miss her.

Astrid's Birth Announcement

Our photographer made a birth announcement for us. I just saw it at 12:30am. Now I can't sleep. Love her and miss her...

Sunset

I realized that in my absence that I completely forgot to post the beautiful sunset photo of Astrid that was drawn and photographed by Carly Marie at The Seashore of Remembrance. Here it is..

Mother's Day

The week leading up to Mother's Day was a rough one. So many reminders of what I don't get to be and don't get to do. It's strange how some days I can listen to people talk about their kids, and I'm not phased. Other days, it's torture. Last week was all torture. There were some things that helped though. Flowers from my in-laws. A rose bush from my parents. A sweet baby kitten from my step-daughter. These things just said to me that these people loved me, they thought of me, they acknowledged my pain. The day itself though was good, as I had the healing powers of tiny kitten feet running throughout the house distracting me.

Coworkers that were pregnant continue to be pregnant--as they should be. As I see their baby-bumps growing, I wonder what I would have looked like. If I would be glowing as they are. I wonder if I would have been filling out my maternity clothes that I had bought. I see them in their bliss and feel like I'm suffocating. I feel like that feeling may never go away. And it feels horrible to have that kind of feeling because of someone else's happiness.

It's interesting to me though who was willing to recognize that Mother's Day was going to be so difficult, who wouldn't acknowledge it at all, and who didn't even think of  it. Of course my parents did. They are grieving for me and for themselves through this process, so it only makes sense that they knew this would be tough. Though I do wonder if they know that every mother's day without Astrid is going to be difficult, not just this first one. My surprise acknowledgement came from a guy that used to work on my team that became a friend. He sent me the following in a text message that afternoon:
"I don't mean this to make you any sadder than you may already be. But happy mothers day. You are a great mom to [step-daughter] I can tell. And you help some of us out too. So thank you."
I was shocked. And felt so at peace reading it. There's so much fear that saying something is going to make us grieving mom's sad. And yes, I may tear up when it's acknowledged, but it's not because things are being made worse. It's not because I forgot that my baby died, and you just reminded me of it. I tear up because you might be one of the few people in my life who isn't afraid to say something.

Mother's Day Flowers

Rose Bush

Meet: 7 of 9! Or just "Seven" for short. It's a Star Trek thing.

And another thing...

I want to put a fucking sign around my neck that just simply says, "She has a name..."
No one wants to acknowledge that I gave birth to a baby. At 21 weeks. And she's no longer alive. I held her. I loved her. I gave her a name. I didn't just "lose a pregnancy." I didn't have a miscarriage. I had a baby. I had a daughter. She has a name.

I'm still around.

I just don't have the energy for blogging anymore. Or at least I don't right now. Work is exhausting. My life has become a series of motions that I'm not finding much joy in. I find myself bouncing between angry and heartbroken. I can physically feel the pain of my heart breaking. It is horrible. The nightmares are terrible. I'm struggling so much now as I try to understand and find purpose in life. I have started to feel like that my life will not have purpose unless I"m able to have a child. These were not feelings that I've ever had until now. I feel like at this point my existence is to make sure that everyone else around me is taken care of and gets what they want and need.  I'm taking care of everyone's everything. When will I ever get what I want? When will I ever get what I need? I'm falling apart. So is this blog. I'll be taking a break from it for a little while so I can try to gather some thoughts. I'm still around, but things just aren't going well.

A Heart to Hold!

I'm excited about something, but in a sad way. I requested A Heart to Hold after Astrid was born and it came in the mail today! I'm so bittersweetly happy to be holding it right now. I love her. I love my heart. The non-profit organization makes these hearts for loss-mamas for free. The heart weighs as much as your baby. My little heart weighs 13 oz. Here are a couple photos I took with my phone:

Missing you, Astrid Lynne...

Back to Work

Monday was the day of days. It was the first day back to work since we lost Astrid. "Dread" is a good word to describe what I was feeling about going back that day. I expected it to be pretty terrible, and it lived up to that expectation. My work environment is office work. I'm surround by about 100 people during the day by people that work under me and over me. The leadership team that I'm a part of (and relatively close to) has about 20 people.  Before the loss, I was one of those people that was no stranger to visitors at my desk. It was relatively commonplace to have people stopping by and chatting about the pregnancy or about work or about anything really. My therapist assumed in this kind of environment that I would be overwhelmed with the people coming to me and asking me how I was and asking where I was and asking and asking and asking...

Instead, what I got was something much different. I felt like I was being avoided like I had the plague. The few that didn't avoid me talked to me about work as though I hadn't been gone or like I had been gone on some sort of 4 week vacation. And it's not like everyone didn't know. I made it a point to tell the people at work that I'm close to that the loss of my baby wasn't a secret. I couldn't stomach the thought of being happily asked, "Where ya been?" or "How's the baby?"

Anyway, so Monday was hard. Out of all those people I work with, there were 3 people that straight out verbally acknowledged that I was pregnant and that I wasn't anymore. One of the women I work with--god I give her SO much credit for this--came up to me while I was eating my lunch, sat down, looked me straight in the eyes, and said, "Jennifer, I'm so sorry." Of course, I immediately started crying. Partly because it was the first person there to come out and say it to my face. Mostly what I got the rest of the day were extremely cautious and extremely generic How-are-You's as I was walking by people. 

There was a card on my desk too when I arrived. It was a Thinking-of-You card. Inside everyone wrote something, but no one mentioned the loss. It was all, "Welcome back." I don't want anyone to misunderstand why I'm telling you this. It's not that I'm being unappreciative of what they were trying to do. I'm writing it because I want people to realize how much people avoid talking about loss. No one wants to say it. The avoidance game they were all playing isn't because I work with a bunch of assholes. It was because they thought that giving me space was what I needed. To an extent, they're right. But not to the extent that it was happening.  I told my husband while we were in bed on Tuesday night that I felt lonely at work. In a sea of that many people, I felt completely alone. He asked if I felt more alone at work than I did when I was home alone in the bedroom with the door shut. I let him know that I really did. I spent about 2 hours that night crying to him that I didn't want to go back. 

I've mentioned previously that it takes a lot for me to get truly close to people on my end. Typically people feel closer to me than I do to them. I do have one dear friend at work though, where that's not the case. People make jokes about having their "work wives" and "work husbands". He and I are more like "work brother and sister." If our birthdays were the same, I would assume we were separated at birth. I had mentioned to him the conversation that James and I had the night before. There were two things he could have done with that information. One being to just keep it to himself and to feel bad for me. But that's not what he chose. A little while after I had told my friend how I was feeling, one of our coworkers came to my cube and asked me how I was doing and said he was sorry for the loss. He told me that the leadership team was all aware of what happened but no one wanted to upset me or make me more sad. No one knew what they should do. Being an honest person, I let him know that, first of all, I completely get that and I can't imagine the position my work-peers must be in. However, there is nothing that anyone could say that would make me more sad than I've already been the last four weeks. We talked a little more after that about things. It was a brief conversation, but it was the acknowledgement I needed. I sent him an instant message after that just said "Thank you." He let me know that I had really helped him understand what things are like at my end. After this, I realized I had someone else to thank for this acknowledgement and conversation. 

It occurred to me that it was my friend that told our coworker to come talk to me. It was a daring move, but it was the right one. That, ladies and gentlemen, is a true friend. Because he chose to take what I told him and use it instead of keeping it to himself, I had a better day. It was that conversation that I had with our coworker that lifted some of the fog that I had been walking around in for the past two days. Today is my regular day off, and because of yesterday I don't feel a sense of dread about going back to work tomorrow. 

I hate that I'm going through this. My heart aches for my Astrid. I love her and miss her more than I can communicate in words. But I've been learning a lot. I've learned about the kindness of strangers. I've learned what not to do or say. I've learned about true friendship. I still have a very long way to go toward healing. I've still got a lot of grief to deal with. I'm just glad that I'm not drowning. 

Frustration

Well apparently I'm not good at grieving. I dealt with the death of my father when I was 22, so I thought I would be an old pro. Well. I'm not, as was highlighted in today's therapy session. And Yes. I'm going to therapy. Today was session 2. It sucked. And I hated it. The completely pissed off part of me wants to cancel all of my appointments and just figure this out on my own. The very small part of me that is logical right now, knows that this is "good" for me. But like I said: only a small part of me is feeling logical right now.

It's not my first time in therapy. I'm no stranger to psychological downfall. So now that's out in the open. However, I feel like this is my first time where I'm being profiled by the therapist in a way that is entirely too real. And I don't like it. This one isn't going to let me hide behind my defense mechanisms and my walls. She's going to make me come out of hiding, face the actual grief head on, talk about Astrid, and cry. It's mostly the crying that I try to fight the most. And I really enjoy hiding. I feel most secure in isolation. Therapist says that I need to become less isolated in the next few days or going to work is going to be that much harder next week. I want to be more isolated in the next few days because I won't get to be isolated anymore once I am forced to go back to work. So you can see where part of the struggle lies. She's also already making very poignant observations as to why I keep everyone at arms reach. Things from my past. I don't like this. You always think (or maybe it was just me) that being psychoanalyzed would be SO cool and SO interesting. It's not cool at all.  It's very real and scary.  Maybe I'm just not ready to be healed yet? Maybe I haven't even started true grieving yet? I don't know.

My "I'll show you" attitude is coming out though too. She gave me some assignments for this week. As mentioned she said I need to come out of isolation. She also said I need to call my supervisor to get a feel for what I'm walking into next week and I need to start exercising to help with depression. Guess how many of those things I feel willing to do? As soon as I'm told that I have to or need to do something, I tend to say, "No. I don't. And I won't." Childish? Maybe. It's part of my personality though. I don't really see myself doing any of those three things.

No good way to end this post except I'm clearly upset. I'm frustrated. I'm exhausted.

Bad days and worse days

For a while there I thought that I caught a glimmer of good days and good moments in between the bad. Lately though, even those seem to be gone. To say that all is gloom and doom is too dramatic.That kind of drama seems too endearingly narcissistic for what's really going on. It's a drama free sadness that I'm experiencing now. Empty. True depression at it's finest. Constant chest pain from anxiety. Lots of moments spent staring at walls. Lots of tears, but they're really not caused by a specific thought. They just exist.  My heart feels closed and heavy. I'm exhausted.

Things keep going

Let's get personal. Well, not too personal. Actually, it's probably a little late for that. I had my first appointment with the doctor yesterday. What a weird experience. I made sure to keep my guard up going in to the appointment. First of all, I didn't know what to expect. Secondly, it's the same location as the hospital where I gave birth. I wasn't crazy about going back there. Thirdly, the OB/GYN waiting room is a cesspool of pregnant women and babies. I made sure not to make eye contact with anyone other than the receptionist. I also made sure to sit around the corner from the main waiting room. And thankfully I got there 3 minutes before my appointment, so I didn't have to sit there listening to the beautiful noise of a crying newborn.

I won't lie about this. Prior to giving birth to Astrid, the noise of a crying baby made me cringe like you wouldn't believe. I couldn't ever wrap my head around the idea of having to deal with that day in and day out. Now it's a sound of new life for me. Amazing how perspective changes in the blink of an eye. 

My appointment wasn't long, but I came armed with a lot of questions. My doctor was so compassionate. Cutting the short story short: he lifted my pelvic rest, the genetic testing isn't yet complete, and we can try again when we're emotionally ready . 

He touched a little bit on the genetic side of things for me. Basically if there is something in our genetic make-up that will make our babies predisposed for this condition, we wouldn't ever have a greater than 50% chance of this happening again. Typically it would be about 25%. But it could just be a complete fluke, meaning that Astrid was 1 in 4000. What the hell? I don't know which way I'd feel better about things. Do I want to have a reason and something to pinpoint this on so we know why? Or do I want it to be a fluke and be pissed that she had to be the 1 in 4000? Whatever. I don't know. It should be another 4 weeks before we hear from the genetic counselor. 

Anyway. After talking to my husband about things, he's leery of trying again so soon. He says he can't handle watching me have to go through pain like this again. He recognizes that while the loss is very real for him, that I endured the physical side of things as well. I am torn about trying again. I've been analyzing if my feelings of wanting to try again so soon is me subconsciously thinking that a new baby will fill the void that I have. I do know though that no baby will ever replace Astrid. So there's a part of me that feels like I "should" wait a while so I know that my emotional healing is well under way. Yet that part of me doesn't want to wait at all. Again, I don't know what's right. I don't know how I should feel. It's almost odd that our bodies just keep going, but our emotions seem to be at a standstill.

I do know that work starts again in just over a week, and I'm completely not ready for it. 

Grief is the Worst.

It's been a while since I had a breakdown. Well, maybe not a "while" considering it's only been just over two weeks since we found out our horrible news. The other night I broke down into actual hysterics though. It was probably building up. My hysteria included, but was not limited to, the following topics:

• I probably won't be able to get pregnant again
• What is wrong with me that I've only been pregnant twice and somehow fucked them both up? (referring to the miscarriage I had in 2011)
• The death of my daughter will change me. 
• The death of my father changed me and ultimately lead to the demise of my first marriage
• The death of my daughter will change me and will lead to divorce.
• My life has been horrible even though I've always made all the right choices
• I will probably die alone
• My husbands feelings of loss can't be as difficult as mine because at least he already has a daughter
• I will never be okay

There was more. I can't even remember now. It all sounds self absorbed and supremely pessimistic now. At the time all of those bullet points were fact, not theories. They were fact, not feelings. In the wake of the hysteria they don't seem like absolutes anymore. Welcome to Grief.  

Okay. Sadness. Anger. Repeat.

Easter. I have no religious connection to the holiday at all. But I do have a strong connection to Cadbury Eggs. When I was a kid this was my favorite holiday. White frilly dresses with white lace gloves. Huge family dinners. The Easter Bunny always seemed to bring the coolest stuff. Tons of chocolate, paddle ball games, slinkies, bubbles. And everything was always pastel colored--a young girl's favorite color palette.

It's kind of hard to pinpoint exactly when I stopped caring about Easter as a holiday. It probably started shortly after high school. Then the door on Easter was slammed shut 10 years ago. It was the last holiday Dad was going to be alive for.  I was more than aware of this, as we were at month 4 of his projected 6 months left to live. And instead of my family of four just being together for our last holiday, we went to my aunt's house 3 hours away. My brother brought his weird girlfriend. Dad was in a lot of pain. The family mostly pretended it was just like any other holiday. And inside I was just pissed. Pissed that my dad was laying on the couch trying to sleep through his pain. Pissed that I was sharing his last holiday with all these people who weren't even comprehending what was really happening. My brother, his girlfriend, and I all left my aunt's house right after dinner I think. I just remember wanting to get out of there. I think that's what really sealed the deal that I wouldn't give another shit about Easter.

My mom still hasn't picked up on the fact that I keep Easter at arm's reach. Each year she asks if we're getting together or if we have plans for Easter. And each year I respond "No" to both questions. Then she gets together with her family or her boyfriend's family. I sit at home like it's any other Sunday.

Now that my stepdaughter is living with us though, it's not quite like any other Sunday. We (well, I) put together an Easter basket for her to wake up to this morning. Complete with all the pinks and greens and yellows and blues. Her excitement reminded me of the excitement I used to have about the day. Having kids around, even teenage ones, brings you back a bit to the days gone by. I'm sure you can figure out where I'm going with this next...

I wish I could have this realization and reconnection with life with my daughter. I would hate to make this seem as though I hold resentment toward my stepdaughter--far from it. I'm just angry again. At the situation. It's a calm anger today though. Yesterday was sad. It's like a constant cycle of emotions that change daily. Or hourly. Ever changing...

The Dream

I woke up at 8:30 this morning and was too exhausted to keep my eyes open. I didn't open my eyes for good until my husband came home from work at 1:30 pm. Considering I went to bed before 1:30 am, you would think that much sleep would leave me well-rested. It probably would have been extremely restful sleep had it not been for the dreams. More specifically, The Dream.

The Dream is the one where you get to relive the loss all over again. It isn't always exactly as it happened, but rather a re-imagined version. This particular version was relatively realistic. The emotion, the birth, the grief--it was all there. So much so that when I opened my eyes the one time between 8:30 am and 1:30 pm, I immediately thought, "It was all a dream." And for just a split second, I felt relief and felt my shoulders relax and was grateful that I was still pregnant. And just as quickly as the thought entered my head, I was jerked back to reality and the relief quickly vanished.  It was just a dream...but it is also the reality that haunts my waking state.

Oh, this day.

I feel bad about the anger post. Not bad enough to delete it or take back any of what I said. It's not that I didn't mean what I said. Nor is it that I actually meant what I said. It's just how I was feeling this morning.  That was me...in the moment.  If anyone out there is reading this, I feel like posting those sorts of emotions shows what grief is really like for me. So the post stays. The emotions remain published.

My mother called today wanting to spend time together and wanting me to offer her more support than I can give her right now. She asked if she was just supposed to talk to her friends about her grief instead of me. I didn't come right out and tell her that I can't be there for her right now since I don't know how to take care of me. I did beat around the bush though, and felt guilty as I doing it.  I was just trying to tell her that I need more time and need more space. I know she's having a horrible time with things, but clearly so am I. The problem is though, I haven't talked to her about how I'm doing. She doesn't know this blog exists. So from her perspective, I'm sitting in silence. From most everyone's perspective, that's what I'm doing.

Another part of my reality today was picking up Astrid's ashes. Two nights ago the funeral home director emailed me and said that it was all ready.  James ended up getting tonight off and my step-daughter was at her grandmothers. So this afternoon was the "perfect" time to make our journey to the funeral home. The funeral home we used is in the city my mom lives in. I'm sure knowing that this journey was going to be part of my day is partly why I had my anger-outburst this morning. The 30 minute drive was mostly silent. When we arrived, we sat in the lobby waiting for the receptionist to come get us. I hadn't been in there since my dad died. I sat on the couch and looked across the lobby through the double doors that opened up into a visitation room that was ready for an elderly lady's visitation that evening. I could see her in her casket from where I was sitting. It made me think that I was far too young to have been in that funeral home twice in 10 years--once for my father and once for my daughter. 

After waiting about 5 minutes, a young girl came out and asked with a huge smile if we were there to pick up the ashes. My first thought was, "I didn't know you could work in a funeral home when you're 16." I'm sure she was actually in her 20s, but whatever. My second thought was, "This situation doesn't really warrant the bubbly persona that she's projecting." Of course, I just replied with "Yes." A minute later she was back out there with the urn and two ash-holding pendants that we had ordered. We signed a sheet of paper, and that was it. No condolences. No nothing. Just a bronze sculpture and some jewelry with my daughter inside. 

Oddly, I didn't cry. I thought this would be the one time I could guarantee that I would be in hysterics. Instead, I just felt a calmness wash over me. The urn was absolutely perfect. The jewelry was much more beautiful than I thought it would be. I did, however, decide that I wanted a drink. We stopped and bought a six pack and decided to stop at my mom's house. Seeing her made me feel better for trying to politely tell her to back off earlier in the day. It made her feel better to see me and see the urn we picked out for Astrid. 

God, I love Astrid. Deeply. I'm so relieved and so happy that we decided not to bury her or bury her ashes. Right now I have the urn on my bedside table. I have the pendant on a chain around my neck. I have her pink blanket next to me. And at every waking moment, I have a candle lit for her. The connection I feel to these items at this time is so hard to describe. I just know that I love and adore her. This is as close as I'll ever be to her for the rest of my life. I don't know if I'll ever be okay with that, but at least I have these things to help give me the illusion of closeness.

The bedside table

Is it time for the anger stage?

I'm just pissed off. And in disbelief. Is this seriously the way my life is going to go? Outside of this pregnancy I've had such a shitty last 6 months. I never truly thought my life could actually get worse. Now the atomic bomb of horrible-life-twists-and-turns has fallen right on top of me. So in the future if anyone ever says to me about anything, "At least it can't get any worse," I'll know to respond with, "Yes it can."

I'm just so angry about so much. Starting with "why did this happen?" And even more specifically, why to me? The crappy, angry side of me wants to know why doesn't this sort of thing happen to bad people. Like people who are all cracked out during their pregnancy? I did everything right. I followed all the pregnancy rules. Why doesn't this happen to people that abuse their children? How could this happen to someone like me? Someone who was going to love their child and teach her to be good and kind? Someone that was going to protect her and respect her?

Then when I really think about why, I start wondering if it's because my husband is a smoker. Or maybe all those jokes I made about modern medicine saving me from natural selection weren't actually jokes. Maybe they were more true than I thought, and I'm not actually supposed to procreate.

I'm angry about other things too--like that my husband is back to work already. And has been. He works two jobs, and works very hard and does so for financial reasons. He's typically gone from 9 until 3 and then from 4 until 10:30. So that leaves no time for me and no time for supporting me. It also leaves me to be the parent of his daughter as well. He said to me last night something about how he has to put on a face for everyone at work. I replied something like, "Yeah well I'm doing that every day too, because I'm sitting here in my grief still having to be a parent to a teenager. And it's not even MY daughter, it's YOURS." And not to mention that teenagers are self-absorbed creatures by nature. So she doesn't have a clue that I'm still having a horrible time, and if she did she wouldn't understand why.

God this blog entry is getting sort of chaotic and disorganized. That's what grief-anger does to you though. It makes you feel chaotic in your mind and your thoughts seems like they're coming from all directions.

I'm also angry that my husband verbalized one too many times that he wanted a boy. And of course I know that he would have loved having a boy or a girl. But he said boy and he said it a lot. And he said it was because he already had a girl. Now it turns out we had a girl. And now she's dead. And it's really fucking great that he already had a girl, but I didn't already have one. And now my little girl is gone.

There's more. There's so much more. But I can't even come up with a way to organize it in my mind in such a way that I could write it down. I'm angry about a lot. Which will probably lead me to another day in my room with the door shut. The solitude is what I need right now.

Business

One of the biggest worries I've had since this whole thing started was our finances. So on top of all the emotional trauma that I've been dealing with day in and day out, it's making sure that our rent will be paid, that bills will be paid, and that food is on the table.  

Not to mention the hospital bills that will be coming in. I just called to get an idea of what will be submitted to insurance...wow. Just wow.  I expected a lot, but I didn't expect to hear those numbers. The genetic testing hasn't even been billed for yet. This is the time where I find out what my insurance plan is really made of. I swear if it comes through the way I think it might, I will stop bitching about it like I have been for the last 5 1/2 years. 

But the rest of finances are still a slight concern. I was in the hospital Thursday through Sunday. So last Monday morning when I woke up at home, I started "taking care of business". Handling the business side of things is always the perfect way for me to not acknowledge my emotions. If there's no research left to be done or business to take care of, then I'm left sitting here feeling things. I got bills paid for the rest of March, as I had gotten paid while in the hospital. I didn't have enough paid-time-off for work to cover my work missed (we accrue ours bi-weekly instead of being given the lump sum at the beginning of the year)--if I had gone to term I would have accrued plenty. So the lack of pay-check in the next month is a scary thought. I ended up looking into one our other benefits though, applied, & got approved. A refund we were waiting on from the state (although small) came through. Another small refund should be coming to us by the end of the month. Again these are not large sums of money, but it's money that'll help us not worry as much. My husband always says, "things have a way of working themselves out". I hate it when he says these sorts of things. The realist/pessimist in me gets annoyed by optimistic non-sense. But it seems this time, and a lot of other times, he's right Things will be tight, but still okay. I may not feel like I can breathe most days, but at least it's not being worsened by something as stupid as money. I did have the talk with my step-daughter though, letting her know that things this next month will be tight, but we'll do our best to make sure she won't notice. We'll still make sure she's provided for, we just might not be able to do as much extra stuff that we like to do. She, as always, is more than understanding.

Of course I have a lot of family, friends, and acquaintances to thank for meals that have shown up and gift cards and money. Nights where we couldn't fathom going into the kitchen and coming up with a meal, we were covered. A trip to the co-op for some necessities, we were covered. Picking up some things from Target so my step-daughter could have candy in her Easter basket next week, we were covered. My husband has never experienced the death of a loved one and didn't understand why people would make food for the bereaved in these situations--now he does. Thank you to everyone that was able to help. <3

...

Yesterday has passed. The goals that I set yesterday seemed simple enough. Today they seem lofty. For a minute yesterday life seemed normal. As the "normal" was happening, I also felt guilt for feeling normal. Yesterday I accomplished goal 1, 2, 5, & 8. But today, I'm back where I was. Two steps forward, one step back? I guess it's still forward progress.

First steps & goals

I decided to call my mom and ask her to come over. My cousins are with her for the weekend. I said, "I could really use some Dairy Queen," and that's all it took. She and my cousins will be on their way shortly. It's a 30 minute drive from mom's house to mine, but that's the thing about amazing mothers. They drop everything for their children. So inviting mom plus cousins over is a huge first step after my week of self-inflicted imprisonment. I'm nervous. I know it will be fine. But I'm nervous. I know there will be crying and hugs and more crying. It'll probably be good for me though. Mostly though, I know it will be good for them. I know that their hearts are breaking for me.

So after deciding to take the plunge, I set some mini-goals for myself-in no particular order:

1. See people other than my husband and step-daughter (check)
2. Start spending more time in other parts of the house and get out of my room more
3. Start exercising for both my physical and mental health
4. Read a book
5. Spend more 1 on 1 time with my step-daughter 
6. Cook a meal
7. Start writing thank you cards for all the meals, gifts, and support
8. Enjoy music again
9. Start eating with my family
10. Start reaching back to friends that have been reaching out
11. Try to smile more than cry when I think of Astrid

So the first one is about to be completed. Husband and I decided to tackle #3 starting next week--baby steps though. Just a mile a day at first. #5 is very important to me. My step-daughter is 16 and has been so courteous of my grief this past week. She has the biggest heart. Next week I'm going to see if she wants to go for a drive down the river road for photo-fun-time with our cameras.

I'm glad to have these mini-goals to work toward, but that doesn't mean the devastation is gone yet. The horrible knots in my stomach seem to have taken permanent residence. The constant fear is still lingering. My chest still feels like it could literally explode. But I have goals now. And that's something.

Now what?

That story sure took a lot of words. Now I'm wondering what's next. It's what I've been wondering the last few days, except now I don't have the telling of the story to distract me. I don't even know what to do with this blog next. This week I've still been dealing with my physical recovery, and of course trying to stabilize myself emotionally...somewhat. That part hasn't really fallen into place yet. On top of it all there's things like "making arrangements" as they say.

I've been communicating with the funeral director that did my dad's funeral via email the last few days. We've opted for a cremation. I've found myself going back and forth between exhaustion and insomnia. During my insomniac periods, I set out on a quest to find the perfect urn. That seems like an oxymoron in a way, doesn't it? "Perfect urn." I was able to find one that was a bronze sculpture of mother, father, and baby. It looks like any other decorative piece you'd find in a happy household with a family of 3. That's what I wanted. Something that wasn't intrusive, and didn't scream, "URN! There's someone dead in here!" Sorry to be so blunt, but that's how I feel about most urns.

There's so much to consider about making arrangements. I had done some of this before when I helped my mother plan my father's funeral 10 years ago this July. I just was never prepared how those things would apply to Astrid 10 years later. Deciding if we wanted an obituary, burial vs cremation, burial of cremains or urn, a memorial service, any keepsakes, coordinating the timing of it all. Thankfully my mother helped me with a lot. Thankfully I kind of remember some of this stuff. And thankfully my husband and I were able to easily agree on what we felt was best for our healing as a couple. Nothing would have been worse than if we had two different ideas of what would be best for this situation.

So in a few days, we should have her cremains in a bronze sculpture. I know how terrible this must sound for some, but it is such a necessary part of our healing. That'll be the first step...so now what? At some point I''ll need to leave this room. At some point I'll have to see people.

Labor & Delivery - Part 2

The story doesn't quite end there. I was able to hold Astrid right away--wrapped up in little blankets. She looked so beautiful. I could see that she had her daddy's chin, my lips, and my nose. She looked so peaceful. I just told her how sorry I was that I couldn't keep her safe. How sorry I was that I made her broken. I told her how much I would always love her and she would be with me every single day. I told her how much I was going to miss doing things with her that my mom did with me. Her prom, her wedding, her baby showers. And I just apologized to her over and over.

After we had some time, the doctor still needed to deliver the placenta. I wasn't able to push it out after trying a few times. Then they tried essentially pulling it out, but it just came out in little pieces. She said it was lucky that I actually just got the epidural because I really couldn't feel any of it. Eventually though, they said I needed to go to the operating room. My husband held Astrid in his arms as they wheeled me away in the hospital bed. Back in the Operating Room they used this vacuum to try to suction out the placenta. 30 minutes later (which she expected it to take 5) they thought I was okay.

I was wheeled back to the room where my mom was holding Astrid now. James was by my side as I sat up and said I just needed water. I told mom I wasn't ready to hold Astrid again yet. Then, I started to get sick. We couldn't find the nurse call light. Then I turned to my mom and said, "I'm going to pass out." My husband ran out of the room to get nurses. The last thing I remember was my mom screaming my name--not just yelling. Screaming. Every nurse on the floor came rushing into the room. I don't remember much of this, most of this I have been told. My pulse dropped down to just under 40. My blood pressure dropped a lot. They weren't sure what was going on. They got me on O2 right away. I started to slowly come back to consciousness, but my pulse was still low. The doctor was so upset--she felt like she did something wrong. She called another doctor to get an opinion because after 2 minutes my pulse was still just at 40.

I honestly thought I was dying. I secretly hoped that I would, because I didn't know if I could live without my little girl. They asked me if I knew my name and where I was. My husband just asked me to keep talking to him. I kept fading back and forth. My mom would just ask, "Jen?" I would say, "Yes?" and that would be enough for her to know I was still there. It seemed like eternity went by like this but after about five minutes (maybe less) they gave me a shot of epinephrine. Shortly there after the color started to come back to my face. I was told my entire face and lips were as white as a sheet. They pumped me full of fluid and confirmed that I lost just over a liter of blood, which is higher than what most c-section patients lose. They mentioned transfusion, but felt like with IV fluid and taking it easy I should be fine.

An organization that takes professional photos for free for parents in these situations came by and took some photos of our sweet girl with our permission. At first it seemed morbid, but both she and the nurses who have dealt with this said we would eventually find it healing. After the photos, the geneticist came in and said she looked perfect. Nothing at first glance that looked wrong to her, and that was good news. And sad news. After she left, and photos were done. It was time for our last moments with our angel. I again told Astrid how much I loved her, how sorry I was, and that she would always be my baby and my little girl. I played and sang to her "First Day of My Life" by Bright Eyes. The lyric that says:

And so I thought I’d let you know

That these things take forever

I especially am slow

But I realize that I need you 

And I wondered if I could come home

For me that line referred to all my emotional blocks that I put up during this pregnancy. I know that logically speaking there's no way that this baby would know that I had done that. But the heart and the brain are two different places. After that, Daddy said his goodbyes. My mom and her boyfriend came in and said their goodbyes. At that was it.

They kept me in the hospital over night once more, which was good because I wasn't ready to go home that night empty handed. they came in later that evening with little molds of her feet and hands. They had foot prints done, and her little outfit was in the memory box for us.

I also kept her blankets that they kept her wrapped up in. I haven't been able to let go of them. I've slept with them every night since. I don't know how to get through these days. I don't know how to survive this horrible, horrible experience. I just know that I love her. I love her so terribly much. And I hurt so horribly. I want to wake up from this nightmare. I want to hide from everyone. This is the part I don't know how to do...

First Day of My Life - Bright Eyes

"I'm glad I didn't die before I met you..."

Labor & Delivery - Part 1

Friday morning, we walked through the hospital and up to labor and delivery. It was horrible, long walk. Pictures of babies on the walls along the way. I couldn't make eye contact with anyone. I just kept thinking, "so this is what this would have been like in 4 1/2 months..." I didn't even have to say my name when we arrived: the tears said it all. The receptionist just said, "Jennifer?" I nodded my head, and a nurse came out to lead us to our delivery room. I just stood in the entrance of the room just sobbing. I couldn't believe what I was going to have to go through. The nurse asked if we just wanted to talk first instead of putting on a gown. I said yes. Then she asked if we had any questions.

I had millions of questions! Why is this happening being the first? I knew she couldn't answer that. But I wanted to know is my baby going to be in pain (probably not)--will it be born alive? (they're not sure) How long will the process take? (it could take anywhere from 8 hours to over 24 hours. they didn't know). From 7:30 am until 10 pm that day, we sat in that labor and delivery room. My mom and her boyfriend came to visit. My husband treated me like royalty. To say he was a rock is too cliche to describe what he was for me during this process. My doctor stopped in every few hours. The nurses stayed and talked.

Every 4 hours I was given a dose of cytotec to start contractions and help dilate my cervix. They'd come in and ask how I was feeling, I'd say, "the same" and then another dose would come. At 10  pm, for my last dose of the day the doctor wanted to see how far I had dilated  I was still at the same 1 cm that I was at at 7:30 am. He said we had a long journey ahead of us. (I was 1 cm at 7:30 am because they inserted laminaria sticks the day before, which are small hard sticks that slowly expand in the cervix). I was given a shot in my IV to sleep.

At 2 am my doctor came in and woke me up and said he wasn't doing another dose during the night. He did research online he said, because it was taking much longer than usual for my cervix to soften and dilate. He said he wanted me to get some rest. Tomorrow could be another long day.

The next morning after breakfast they did a triple dose of cytotec. Then eventually I could tell actual contractions had started. Every 3 minutes, lasting for about 30 sec. This lasted quite a while that way--I was still fighting getting pain meds. I told the social worker the day prior I didn't think I wanted any, because I didn't deserve them. I felt like I needed to be punished for ruining my poor baby's life. Eventually though my husband talked me into it. We tried IV pain meds, but by that point the contractions were so strong and so fast, it just didn't help. Instead of getting 3 minutes or so of relief between contractions, I was getting maybe 20 seconds. Eventually it was just one long constant contraction with no relief. I gave way to an epidural. About 30 minutes after the epidural I realized I could just feel pressure and no pain. I told my nurse and she went to get the doctor.

It was a new doctor since it was the next day. She felt me and she said it was time. It had been such a long couple of days that I was relieved to hear that and also horrified. My mom was in the room with me at the time and so was my husband. She had stopped by just to see how I was doing. I asked my husband if it was okay that she stayed. He said, "Of course." So with my mother on one side and husband on the other, I pushed whenever the doctor asked. It was about five times. I lay there and cried as the nurse took her to the scale and cleaned her up. James tells me now that he remembers the nurse asking, "Can I call it?" Meaning was she okay to call the time of death. At this point all I could ask, "Do we know if it was a boy or a girl?" At 1 pm our little girl, Astrid Lynne, was born sleeping. She weighed 13 oz and was 10.25 inches long.

News no parent wants to hear..

The morning of March 14th arrives. I had spent the evening before at Mary Poppins in Madison, WI. I looked at all the people sitting in the Overture with their children and thought to myself, "Look at all these people. Hundreds of people in one location all perfectly fine. Why do I worry so much that my baby will be the one that isn't?"

When I got home the next morning James hands me my baby shower invite that came in the mail. I checked my registry and saw that a few purchases had been made. Not to mention I had an aunt already buy me the car seat that was sitting in my computer room. I recently purchased new maternity pants and leggings since I was just starting to show and clothes were getting uncomfortable.

So at 8am we arrived. The woman taking me back asked how we were doing. My response was "anxious". James' response was "excited". Once they got things started they found our baby's heart right away--that still looked great. They knew they were looking for a full bladder and kidneys yet. Then they kept looking....and looking...and looking. Another tech came in and looked, while the tech behind her had a sort of scowl on her face. Instead of staring at the monitor across the room, I started staring at the ceiling. They pushed their chair back and said, "we're going to ask the doctor come in to see if he can take a look..." At that instant, I started crying. I knew what that meant. They pulled the towel back over me and turned on the lights. Once doctor came in and they started again, they started taking pictures of what would be the "left kidney area" but the screen was blank. Same with the other kidney. Another doctor came in and sat down and turned to us and said, "I have a lot of experience with this and have been doing it for many years. I'm just going to take a look". They kind of talked among themselves while I just stared at the ceiling. Then I heard him say, "Oh. There's the adrenal glands...all the way down there." The two doctors walked out. Then one walked back and and said, "Jennifer, James--why don't you come back to my office so we can just talk". The lights came on and here started  what I knew was going to be a much different journey than I ever imagined.  Even with my cautiousness and all my guards up along the way, you never can prepare yourself for this.

The long short of that talk was that the baby developed beautifully, except it didn't have it's kidneys or bladder. Doctor said unlike adults without kidneys, developing babies need them as they help the amniotic fluid to increase when baby urinates, and increased amniotic fluid allows baby's to grow normally and develop strong lung function. He said if this pregnancy were to continue, baby would have no amniotic fluid (they barely measured any in my womb as is), but it would keep trying to grow, but stay in the area of amniotic fluid--which is going to cause baby to be under a lot of pressure and become very malformed. The diagnosis was bilateral renal agenesis. The mention of the adrenal glands? Well adrenal glands rest right on top of our kidneys. Since they were "all the way down there" that confirmed their suspicions without a doubt that this diagnosis was true. Babies with this diagnosis that even make it to term are either stillborn or live a max of 4 hours. Most will die way before 40 weeks. This condition was "incompatible with life" as they say.  I asked the doctor would they even know if the baby was in pain in the womb. He said, there's no way anyone can know.

We didn't really have options. What became the ultimate decision was that we would need to terminate the pregnancy. This was the 14th of March--the 15th I was going to be 21 weeks. The doctor said he strongly felt this was the right decision. I couldn't live knowing my baby was going to suffer inside of my little house that my body built for it. I just couldn't. The doctor was able to get us into labor and delivery on March 15th at 7:30.am.

Before we left, he wanted us to talk to a genetics counselor. While waiting for that doctor to come in, I called my mom's boyfriend at work. The secretary answered and knew who I was. Before she got excited and mentioned pregnancy, I told her it was a family emergency and she quite literally ran to get him. She came back to the phone out of breath, and said he'll be right there. He shortly there after picked up the phone and I asked if he was alone. He said he was. I said, "I need you to go get mom. I need you to be with her. I haven't told her yet, but our baby isn't okay. I have to deliver tomorrow. Our baby has no kidneys, no bladder, and no renal arteries--this is a fatal abnormality." I felt awful asking him to do this. I felt like I owed everyone an apology for giving them such hope for this baby, and not being able to keep it safe the way I thought I should be able to. I felt guilt.

The genetics counselor came in and said they wanted to get some family history, wanted to take a small skin sample of baby when it was born. They also wanted an autopsy. Their aim is to answer that one question that my husband and I had been asking ourselves since we stepped out of the ultrasound room: Why?

Positive, but feeling nervous

On November 14th I took a pregnancy test at home. I so badly wanted to be pregnant, as I knew my due date would be so close to my dad's birthday and the day he died. I hoped that this would help give me and my family the healing we needed in July. But almost exactly a year prior I had gotten my positive pregnancy result with a hopeful July due date only to miscarry 6 weeks later. My nerves were definitely there. But sure enough, much to my surprise, I was pregnant. And instantly scared.

Everyone told me, "just wait until you make it past your miscarriage date--you'll be fine". Then it was, "just wait until you're out of the first trimester. Then you'll feel great." Then, "Just wait until you hear the heartbeat."  "Just wait until you see the baby on ultrasound." "Just wait..."

Admittedly each step mentioned above did help, but I was still so cautious with my emotions. I couldn't just be happy-go-lucky about this. It's too serious. Yes baby's are beautiful and wonderful and they bring so much joy. However, biology is so complex and so uncertain and so many horrible things happen to such innocent little people. This was far too serious and important for me to just be excited about buying tiny clothes.

Fast-forward to our first ultrasound on February 25th. I was so anxious. James, my husband, was so excited. We were going down a checklist. Here's the abbreviated version, "Heart, check, all clear. Brain, check, all clear. Measurements, 18 weeks, all clear. Bladder...must not be full. Baby must have just peed. We see that sometimes but we really like to see a full bladder. Hands and Arms, check, all clear. Hmm. Well we can't see feet and give you a gender. Baby won't move his/her hands from in front of his/her face either. Try emptying your bladder and let's get this baby to move around a bit. Nothing? Let's have you get up and walk around for 5 to 10 minutes. That usually does it. Still nothing?"

I should make it clear that the baby was moving, he/she just wasn't changing positions. After an hour and 10 minutes, they said there was nothing to worry about and that this was completely normal. Baby was just being stubborn. "We'll have you come back after you're 20 weeks and we'll get everything else all taken care of."

I left feeling some relief that brain and heart were wonderful. James left feeling excited, but disappointed we didn't know gender. I remember telling a coworker that we were almost clear--that brain and heart were good. She lectured me on how I needed to start enjoying my pregnancy and stop being so nervous. But as I said, growing a baby is a serious job.

Our next ultrasound was scheduled for March 14th.

How did I get here?

Life just took one of the most wicked and hateful turns. I'm living in a hell I can't describe. But I am going to make a good attempt to describe it anyway. I need to. It's the only way I can think of that would allow me to cleanse my soul and fight through the darkness that has fallen over me.

This will be the story and struggles of saying goodbye to my beautiful daughter, Astrid Lynne. She was born sleeping on March 16, 2013. I will try not to hold back my truth. And my truth may be uncomfortable for some of you at times. In the coming days I will post the story of what happened and why. This post is just my beginning.