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Archive for September, 2009

Sometimes, in remembering, it feels like I am looking back at someone else’s life. I see images, as though I’m on the outside looking in.

I see my shaky hands holding that positive pregnancy test in January 2009, wondering if I should wake my husband or if I should wait a few more days to tell him, after I’ve taken a few more tests.

I can see his sleep-filled face, not fully registering what I was telling him, afraid to believe this positive could stick. I see a trash can full of positive pregnancy tests, for it took a full week of testing to convince myself I was going to stay pregnant.

I see myself reading pregnancy books about things to avoid, what to eat, what not to eat, and all about the baby’s development. One week in early pregnancy the book said the baby was the size of a blueberry. I held a blueberry in my hand and imagined it was my baby.

I see myself scared – so fearful of a miscarriage. I buy a home Doppler so I can check in and make sure the heart is still beating. I remember when I thought a miscarriage was the only thing I had to fear in pregnancy. I was sure once the first trimester ended my worries would be over. Then I was introduced to a new fear – I read about someone having a miscarriage at 16 weeks. I breathed a huge sigh of relief once I passed that week.

I see myself lying on the couch, so still, waiting for those flutters I had read about. I feel something. Was that my baby? It happens again, and this time I’m sure. My baby has gotten big enough for me to feel her moving. Lying on the couch becomes a nightly ritual: my time to close my eyes and wait for that little life inside me to make herself known.

I see myself filled with excitement. Soon I would find out the gender of my baby. Soon we would know if we were having Madelyn or Wyatt. Soon I could start buying baby clothes. I was so excited to register. We went to Babies R Us and looked around in preparation. I see Nathan and I arguing over bedding. If we have a girl, he doesn’t want anything too pink. But I’m the girly girl who thinks the more pink the better. For the first time we think maybe we should hope for a boy. We had always said we wanted a little girl. We would have loved a boy too, and been just as excited. But we were really hoping for a girl.

I see myself the night before the ultrasound. I am nervous and scared. What if we find out something is wrong? What if something has happened and there’s no heartbeat? Nathan tells me not to worry. I also tell myself not to worry. Nothing is going to be wrong. I know so many people who have had babies, and nothing has ever been wrong for them. Why should I be so afraid? I’m overreacting. I need to learn to stop worrying – I don’t want to be that kind of mom. I calm down, but still get little sleep. I’m too excited.

I see myself in the waiting room. Nathan joins me there. Our appointment time passes by, and we still wait. I’m in so much torture, both with anticipation and nervousness. They call our name. I tell the ultrasound tech I brought some orange juice to drink, just in case she needs to get the baby moving. I lie on the table and practically hold my breath while she puts gel on my stomach. This is the moment I’ve been waiting for since the positive pregnancy test.

She checks the heartbeat. It’s perfect.

Then, those words. The words no one wants to hear. The words “Something’s wrong. I need to get a doctor.” (More about that day is here.)

I see us in shock. This can’t be happening. I see tears falling down my face as we wait in a room while they get us a perinatal appointment. They let us leave from a special exit – an exit that allows us to avoid the waiting room full of pregnant women.

Women with hopes and dreams.

My hopes and dreams.

The ones that had been taken away from me.

I see me at home, in bed. Unable to get up or do anything but cry. What was going to happen to my baby?

I see us at subsequent ultrasounds and in the hospital. The baby is doing so well. Surely she is going to be ok. She is a fighter. So many prayers are being prayed. Miracles happen everyday for babies. I have every hope my baby will be one of those stories.

I see my stomach twitching and jerking through my clothes. Nothing makes me happier. I grab Nathan’s hand so he can feel the movements too. Sometimes she kicks so hard it hurts. But I don’t care. That’s my baby in there.

I see myself excited that I will be meeting my baby soon. The one I’ve gotten to know so well. The one whose heart rate goes up when I speak. The one who has been my world since that first pregnancy test. My little one.

I see her eyes flutter open to look at me, and then close, never to open again.

I see myself now, looking at my husband as he sleeps. Seeing her in his face. He gave her the shape of his eyes and his mouth.

I see tears on my cheeks as fresh grief washes over me.

I realize I am not on the outside looking in.

This is my life.

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Catching up

I wanted to let everyone know that Nathan wrote a post about Madelyn on his blog today. Click here to read it.

This week I’ve been busy getting caught up on school work. Every week I feel like I add a little more to my list of things I’m able to accomplish, but I’m still not functioning completely. I had an appointment today, and found myself completely unprepared and unorganized, which is not like me at all. There was a time when I worked full-time during the day, went to school full-time at night, socialized on the week-ends, and still managed to get everything completed and stay organized in the process. Now I feel like I can’t keep up, and the only major demand on my time is school. The sad thing is, I only have 6.5 credit hours this semester (all I need for my MA, woo hoo!) and in the past I’ve always taken 12-15 credits per semester. I think the only thing pushing me forward is knowledge of this being my last semester.

I don’t have much else to say today. As always, I’m missing my baby girl.

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It’s been 4 weeks today, and Monday, 9/28, would have made Madelyn a one-month old baby. I think of the post I should be writing: I should be telling everyone how our baby girl is growing, smiling, and cooing. Maybe I’d be complaining because she was keeping us up all night. Instead of her keeping me up at night, it’s thoughts and dreams of her that wake me. I would give anything for it to be her cries that were interrupting my sleep.

I say this every week, but it’s always so hard for me to believe and accept another week has passed. I’m starting to have some good days, but the bad days are far from over. I almost feel worse on the good days, because I feel guilty for feeling ok, even though I never stop thinking about her or missing her.

I’ve thought a lot about perceptions this past week, and how the lens through which we choose to view things greatly affects our attitude. Some days it’s easier to be positive, other days I have no desire to even try. But there are a few positives I’ve tried to start incorporating in my mindset.

First, each day may be taking me further away from the night I held her, but each day is also a day closer to the day I will see her again. I find the mornings are hardest, because I have to accept all over again that she is gone and won’t be coming back. It’s a very hard reality. But I also cling to the hope of spending eternity with her, and that is why I am able to force myself out of bed each day.

Second, a lot was taken away from us, and I will never get over it. It’s hard to accept that Madelyn, who was so loved and wanted, couldn’t stay, while so many other babies who live on this earth are unloved and mistreated. But I’m also trying to focus on how much was given to us through her life, although short. Her life introduced so much into my life. I feel empty because of some of it – I feel empty without her, and I now know what it’s like to be a mother, and wanted so badly to mother her for much longer than I was able. But one day, when we give her a sibling, I know I will never take anything for granted. I have learned that every moment with those I love is a moment to be cherished. I have a greater appreciation for my husband, her dad. None of this makes her death worthwhile to me- nothing ever will. But it does help me to find meaning in her life, even though it was short.

Finally, I’ve had a really hard time with seeing other women out with their babies, because they are painful reminders of what my own life should be. I can’t change the sadness I feel at that. But what I am trying to control is the anger and jealousy I’ve felt, because I don’t know what they went through to get to where they are. For all I know they could’ve had years and years of struggles and loss and pain. Just because a woman has a pregnant belly or a baby, doesn’t mean all is well. I was at one time walking around with a pregnant belly, and things were far from fine. Yet someone else who had been through a loss may have looked at me with envy. Even if all is going well for them, and they’ve never been through what I have, it is no reason to be angry AT them or at God. I can be sad and upset because of what and who I’m missing – that is only natural and probably not going to change anytime soon, or ever. But I don’t want to become bitter.

Finally, I want to post the lyrics to a song that was shared on a fellow blogger’s site. She also has been through a loss, and said the song helped her. When I heard it, the song really ministered to me as well, and describes very well what I’ve been feeling most recently.

Beauty from Pain

The lights go out all around me.
One last candle to keep out the night.
And then the darkness surrounds me,
I know I’m alive but I feel like I’ve died.
And all that’s left is to accept that it’s over, my dreams ran like sand through the fists that I made.
I try to keep warm, but i just grow colder, I feel like I’m slipping away.

CHORUS
After all this has passed
I still will remain
After I’ve cried my last, there’ll be beauty from pain
Though it won’t be today, someday I’ll hope again
And There’ll be beauty from pain
You will bring beauty from my pain

My whole world is the pain inside me
The best I can do is just get through the day
When life before, is only a memory
I wonder why God lets me walk through this place
And though I can’t understand why this happened
I know that I will when I look back someday
And see how You’ve brought beauty from ashes
And made me as gold purified through these flames

CHORUS
After all this has passed
I still will remain
After I’ve cried my last, there’ll be beauty from pain
Though it won’t be today, someday I’ll hope again
And There’ll be beauty from pain
You will bring beauty form my pain

BRIDGE
Here I am at the end of me
Trying to hold to what I can’t seeI forgot how to hope, this nights been so long
I cling to Your promise, there will be a dawn

CHORUS
After all this has passed
I still will remain
After I’ve cried my last, there’ll be beauty from pain
Though it won’t be today, someday I’ll hope again
And There’ll be beauty from pain
You will bring beauty from my pain

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Today I called the doctor to ask about a pain I was having, and they told me to come in to be examined as they wanted to make sure I did not have an infection.  Fortunately, I did not.  I will have my final post-partum visit in about 3 weeks.

The autopsy report happened to be in, so my OB shared it with us while we were there.  It turns out the reason Madelyn didn’t have amniotic fluid is because one kidney was missing (left renal agenesis) and the other was underdeveloped (right renal hypoplasia).  As said before, the lack of amniotic fluid led to the lack of lung development (pulmonary hypoplasia), and this chain of events is referred to as Potter Sequence.  As we already knew, she also had an av canal heart defect.  The autopsy also revealed an abnormally shaped thymus, though this could be a result of the lack of fluid.  Finally it says something about right atrial enlargement, abnormal lobation, and a supranumerary digit (there was a barely-noticeable extra flap of skin next to her pinky).

What we still do not know is what caused these things to happen.  My OB said there is very likely to be some underlying cause as each of these things only have a 1-3% chance of occurring in isolation, so the chance that multiple things would be wrong and not be connected is miniscule.  I will be calling the geneticist tomorrow to make an appointment for sometime next week.  Hopefully she will give us insight into the cause of things, as well as whether or not the cause is hereditary and likely to pose a problem for any future pregnancy.  I hope not, not only for the future, but because I just know how terrible I would feel knowing that I was carrying some gene that hurt my baby girl.

On a different note, I’d like to give a shout-out to my friend Valerie who made us an awesome digital scrapbook of Madelyn.  It’s absolutely beautiful.  She also sent us some lovely candles that smell wonderful.  She actually makes them!  Check out her store here.

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For those of you who do not know, October is Pregnancy and Infant Loss Awareness month.  It was declared as such by Ronald Reagan in 1988.  October 15 is Pregnancy and Infant Loss Awareness Day.

In remembrance of the too many babies that couldn’t stay in this world, Walks to Remember are being held across the country.  Here is a link to information about the walks.  Many of the walks include some sort of ceremony in which candles are lit, balloons are released, and they read the names of the babies who are being remembered.  From what I understand, funds raised for the walk go to support awareness and research for pregnancy and infant loss.

I’m not sure if I will be able to participate this year, but it is something I will definitely be doing in the future in honor of Madelyn.  My parents and brother joined in on Louisville’s walk this past week-end.  My mom has promised pictures, which I will share if I get them in digital format.

Before my own devastating loss I had no idea there was such a thing as Pregnancy and Infant Loss Awareness Month/Day.  I was so glad to hear about its existence, along with the walks, as it is something I can and will do for Madelyn every year.

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Bittersweet

Today it has been 3 weeks since Madelyn was born and 3 weeks since she left this world.  I was contemplating all of this, and thought I never really understood the meaning of the word “bittersweet” until now.  At the same time, “bittersweet” seems too mild of a word to describe the strength of the polarity of emotions I’ve felt:  my sadness and pain go much deeper than “bitter”.  When I think of “bitter” it brings to mind something that merely leaves a bad taste in one’s mouth, and this is much, much more than that.  The love and happiness Madelyn brought to us also go much deeper than “sweet” conveys.  Yet I can’t think of a better word to capture how I feel about the situation.

I guess what I really want to say is that if I could go back in time, knowing what I know now, knowing that she would be with us for so short of a time, and knowing how badly it would hurt when she died, I would still have chosen to have her.  I would choose to endure all of this, and so much more, all over again for the chance to have her in my life.

My life will never be the same, because of her life and because of her death.  Both have changed me in different ways.  Both introduced new emotions to my life.  Because of her my life is richer, yet so much emptier because she was taken away.  Our hearts have been forever captured, yet forever wounded.

I miss her so much.

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Talk with my OB

Today we met with our OB.  He and his team of partners rotate between 3 offices, and today my OB was at the office connected to the hospital.  It was really hard to go back to the place I had to leave my daughter nearly 3 weeks ago.  This office is the location I went to for all my ultrasounds before I was dubbed “high-risk” and had to start going to the perinatal center instead.  It is where I first found out something was wrong, and all I could think of was that day, May 19, when I walked into the office giddy with excitement, and left feeling like my dreams had been shattered.  I tried so hard to keep my composure and stay strong, but I failed. The waiting room seemed to be a happy place for most – there were several moms-to-be in there;  one obviously very close to delivery, another there with her 2 children who she told the ultrasound tech who called her name she had brought to see the baby.  And then there was me, barely holding it together, trying as hard as I could to avoid  giving in to that terrible feeling that comes when I know there is no point in even trying to hold back the tears, because they are coming.  I felt like my whole body was shaking.  But, I got through it, and was able to get myself together before meeting with the doctor.

As they mentioned to me on the phone, all of the chromosomes were fine.  My OB said he was really surprised by this.  All of the doctors were sure it was chromosomal because of the heart defect.  He said it is hard to believe each thing could be isolated since the chances of each of abnormal thing happening alone are so low, and the chance of things happening together are even lower.  So he is still thinking there is probably some underlying cause; hopefully the autopsy will reveal more.  The big mystery is still why was there so little fluid?  Was there a kidney problem?  Or was the heart condition worse than they thought, leading to an inability to pump fluid through the baby’s body?  Could there have been a bladder issue?  Or are either me, Nathan, or both of us carriers of some genetic abnormality?

The placenta test results also had come in since I last talked to the OB office – apparently it was not  the culprit.  So the top 2 things the doctors had suspected (chromosomes and placenta) have been ruled out as possible causes of our pain.  It seems like we made the right decision by NOT doing the chromosomal testing – we wouldn’t have gotten any information out of it, and having the test come back negative would probably have given us more hope that things might turn out ok.

My OB said he expects to have the autopsy results any day now, but based on what I was told by the hospital, it could still be another week or 2.  My post-partum visit is on October 2, so hopefully my OB will have the report by then.

He recommended that once all the reports are in, we meet with a geneticist who will be able to give us more information as to what possibly could have been the reason for everything, and how likely something like this is to happen again.  Based on what the autopsy reveals, she could end up telling us this whole thing was just really bad luck and probably won’t happen again, or she may tell us it is genetic and there is a certain chance it will happen again in every pregnancy.  If the autopsy doesn’t reveal enough, she may recommend Nathan and I go through genetic testing before we would try to have another baby naturally.

So, today’s visit didn’t really tell us much more, but it did give us an idea of what may happen next, and where we go from here.  In a few more weeks we should have a better idea of what could have happened, and then we will probably try to meet with the geneticist shortly after my post-partum visit to see what she has to say about things.

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