A Good Doctor Appointment (Could it Be?)

Okay, so I am apparently not ready to let go of this blog quite yet. I wrote this post in my new blog, but realized before I hit 'publish' that I don't want to get too technical in that blog - I need it to be a place of healing, and cold, hard medical facts are not what I would call healing. Because I know I have followers here who may want to know about hyper-coiling, I will post this information here instead.

One note before you read on: I cover this in detail in my new blog, but I recently had a 10-week miscarriage. Yeah, I know. Our rainbow baby didn't make it. We're devastated. But...we are staying strong. We are going to try again. This is not the end.

It's not something I thought I would ever be able to say again, but there it is in the title, so it must be true. A GOOD doctor appointment!

Today was our Maternal Fetal Medicine (MFM) specialist appointment. It was scheduled at our post-birth follow-up around 8 months ago, so we have been waiting a LONG time for this. I really did my homework with Haven's cause of death, so I was confident in how I felt a future pregnancy should be managed. I knew that there was very little research out there regarding hyper-coiling of the umbilical cord (also called hyper-spiraling or torsion), and I was concerned that, due to the lack of research, a future pregnancy might be treated as "low risk."

It turns out that my apprehension was unfounded. The specialist was compassionate, but very to the point and knowledgeable. I am going to share the details here, in case another mama comes looking for this kind of information someday and it can be helpful. Or, if you want to know about it just 'cause, you are welcome to read on too!

Haven

• We were surprised to find out that, not only was Haven's cord abnormal, it looks like her placenta had also been abnormal. Excess growth of blood vessels in the placenta indicated that not enough oxygen had been getting through, so it was trying to overcompensate. This may have caused Haven to be hyperactive, which may have caused the hyper-coiling. This is a little speculative because there is very little study on the subject, but it would explain a whole lot. They can't tell us why the placenta wasn't getting enough oxygen in the first place. However, they feel this was likely an isolated case.

• She also mentioned that there were "fibrous kinks" in the cord, which wasn't really explained before. I am thinking these probably came from the last few times Haven switched sides in my belly. I had a bad feeling about the last turn she made, though I couldn't explain it. Now I think I had some kind of intuition that something was wrong (why can't intuition scream instead of whisper?)

• In my bloodwork before delivery, they discovered that my Protein S levels were low. This has to do with how your blood clots. The specialist feels that it is probably just a normal variation, but I will receive further testing in a few weeks. There seems to be a correlation in a lot of these cases between clotting issues and coiling, so I am eager to have this testing done (it may not be cause and effect, but two factors working together in a negative way).

Recent Miscarriage

• This is felt to be completely unrelated to what happened with Haven (as we already guessed).

• We may decide to use baby asparin leading up to conception and after the first trimester next time. There are thought to be benefits in prevention of various placental issues with its use.

Next Pregnancy

• Like the OB said, there is no reason we can't try again as soon as we feel ready. We will likely wait until I can be tested for the clotting issue in case the result is positive (it takes a month for results to come back).

• The specialist and the pathologist felt that, due to me not having any underlying risk factors (hypertension, diabetes, thrombophilia, etc.) the risk of recurrence was <1%. Now, with the statistical unlikelihood of what happened to Haven, I take all numbers with a truckload of salt, thankyouverymuch, but I am going to try and live in the >99%.

• Like with my recent pregnancy, I will begin seeing my OB as soon as I get a positive test.

• Between 10-12 weeks, I'll have another MFM appointment to ensure all is developing okay.

• They will do an 8-10 week ultrasound to date the pregnancy and assess for viability, then one at 18-20 for the anatomy scan, where they will do extra imaging to assess the blood flow from me to the baby, so they can see if anything looks abnormal. Assuming all is okay, I will start having biweekly scans at 28 weeks, then weekly scans at 34 weeks until delivery.

• I will be induced at 39 weeks unless there are factors that indicate we should deliver sooner (or if I am an anxious and emotional basket case and tests indicate the baby is okay and ready). We'll do an amniocentesis to make sure baby's lungs are okay before proceeding.

• Hopefully, we will finally get our "take-home baby." I'm daring to dream.

Now

Physically, I am feeling pretty good, though my hormones are bringing a surge of anxiety as they drop. However, my hormone levels seem to be dropping in a healthy way (hcg was only 130 on Monday!) Our OB will follow us until the numbers reach zero.

I spoke to our OB today when I called for my blood results, and she asked how I was doing. I kind of brushed it off, but she really wanted to know. She said "I am reaching through the phone to give you a hug! I want to see you with a big, beautiful belly!" I smiled as if she could see me and said, "I really want to see me that way too. I hope it happens." It is nice to know that we have such a supportive doctor.

That's it. Consider yourself updated. ;)

The Upswing

I have started a new blog where I am focusing on gratefulness as a means to finding joy again. I still intend to keep posting here (I still need a place to process my grief), but this new blog is a step toward life.

If you would like to follow, you can view and subscribe here (CLICK).

I hope you all find moments of joy and reasons to smile today. One day at a time, that is the only way through this.

If you also blog, I would like to come and check out your posts. Feel free to leave a comment below with your link!

6 Months and Counting: An Update.

I can't even believe that it has been six months since The Worst Day. Well, technically, today was the middle of the three worst days. I was in the middle of my long induction, hopped up on morphine, and my thoughts and emotions were scattered.

I thought I was okay yesterday, which was six months since the day we first heard the terrible news. I was at work doing my thing when it just hit me. Thankfully, my boss is very supportive and didn't question it when I asked if I could have the next day off. She sent me home right then, in fact. I am so grateful.

Six months.

My depression has ebbed, though the past two weeks have been hard. I supervise summer camps as a part of my job, and this particular camp was full of little girls. A friend and a coworker had babies on the same day. Six months happened yesterday.

I have been sleeping most nights, which is a true blessing. The four months of not sleeping is what really sent me spiraling, I believe. Being back to work has lifted my mood and reminded me that there is still life outside the walls of my home. That I am good at things, and useful, and that someday I will have joy again.

I held a newborn baby yesterday for the first time since I held Haven. It was so hard, and my heart was heavy all evening afterward, but I think it was a good thing. He was just a beautiful little guy, sleeping so deeply as Danny and I passed him back and forth. His mom had a placental abruption and had to have an emergency induction. Though the situation was so different than what we experienced, I could tell that it had shaken them, made them think of us, made them so grateful for a good outcome when it could have been so different.

On that note, I am weaning from my antidepressants and hope to start trying again this month or next. I am so grateful now that I did not get pregnant when we were trying a few months ago. I was not anywhere near ready, and I was half out of my mind with grief and mental, physical, and emotional exhaustion. Now I feel like I can start this again with a fresh head, with a new strength.

And I am strong. It has taken me all of this time to realize that people were right when they said that I was strong as I put one foot in front of the other in the days after Haven was born. I was strong when we buried her. When I sunk to the bottom of the pit. When I crawled back out. When I faced the world again. When I learned how to smile again.

Joy comes from weird places, I find. Instagram, for instance. I didn't know what it was for months, until my boss explained (I might be the oldest 29-year-old ever). And now I am hooked. It actually brings me a lot of joy to take pictures and publish them. Cooking has been another joy. I love cooking, but when I was depressed I just couldn't. Crafts bring me joy. I have been making tutus and painting picture frames with friends, and it is lovely. Exercising. Well, I am working on that one, ha ha! I have also started another blog. Where this one has been a depository for my pain, the new blog will be a place where I track my redemption, my new beginning. I will post the link when it is ready to share, if you are interested in following. I will continue to need this space to put the pain, but I am now in a place where I need to sort out other feelings too.

Let's be clear: I have not arrived. I am not "all better." I never will be. I still cried on my way home yesterday thinking about my daughter's tiny body resting in my arms. No, I am not okay yet. But I will be. This is not where my story ends. It's just where it begins.

Mother's Day

I have been dreading this day since the day Haven came into the world, silent. I had anticipated this day almost as much as the day I would give birth, because I would be able to celebrate all of the joy she had brought me in those amazing nine months. I bought a special "I love my mommy!" onesie that I would have dressed her in, and I would have brought her to church to be ooh'd and ahh'd over. I would be able to stand with the other moms, and the kids in the church would have gone around, bringing flowers to all of the moms.

Not to be.

I decided right away that I would not be visiting church today, because I couldn't bear the thought of standing...or not standing. I couldn't decide if getting a flower or not getting a flower would be worse. I knew I would weep buckets, no matter what, and crying in front of people is something that makes me uncomfortable. At first, my husband didn't understand, but he supported my decision to stay home (he'll be coming home from work early to cook me supper and snuggle in front of some cheesy movie of my choice). He also posted an incredibly sweet message to me on facebook. I couldn't ask for a better man to be my partner on this unexpected path.

A good friend sent me this article (click here) yesterday, and it put into words some of the feelings I've been feeling, as well as some of the thoughts I've had about other moms and women in my life. I know so many women in these various situations, so I chose to represent them in my facebook status today:

Sometimes things happen in our lives that make us see things we never saw before. So...

Today I am thinking of my friends whose mothers are sick, and those whose mothers are no longer here. I'm thinking of those whose relationship with their mother or child is not a happy one. I'm thinking of the adoptive and foster moms, and of the moms who made the loving choice to give up their child for adoption. I'm thinking of the many moms I have met who are like me, having lost their child (some of whom are bravely walking the pregnancy road again). I'm thinking of the women who are battling infertility and longing to start a family. I'm thinking of the new moms, and the moms to be. And I'm thinking of my mom, who always worked hard to give us the best life possible.

Mother's Day means a lot of different things to different people. Today is bittersweet, because I ache to hold my beautiful daughter. She brought us a surplus of joy in the short time she was here, and we will always have that. I long for the day when I will hold her again, and I look forward to someday building a family with my wonderful, kind husband.

I know that, if you are reading this, you have probably lost a child. Please know that I am thinking of you today. Please know that you will always be a mom, even if your child is not here with you. Be kind to yourself today, and every day.

Crocuses always make me think of hope, pushing up from the cold, dead ground.
This one gave me a moment of faith in the idea that someday
we will have "take home" babies of our own.

Invisible Parents

I am still surprised every time something happens to remind me of just how invisible we are as parents of a stillborn baby. I found out recently that a Public Health Nurse is supposed to visit all new moms at least two or three times, not only to make sure the baby is thriving and feeding, etc., but to make sure the mom is coping alright with all of the post-birth hormones, and specifically to make sure she is not slipping into postpartum depression. But for me, and for so many other moms like me, there was no phone call. No visit.

I thought at first that I must have missed the call or there was some mistake, but when I mentioned it to my therapist, she confirmed that it is not standard practice to check up on bereaved moms. She thought maybe it was because the hospital recommends therapy to the parents, or they might assume that a parent wanting support will contact someone for support. The problem is, when you are the parent of a stillborn baby, it is agonizing to make calls for any reason that requires you to talk about your loss. Believe me, after four calls to EI, I never wanted to use the phone again.

I think it is a poor excuse to say that no one really knows how to handle this kind of loss. Doesn't the medical community owe it to bereaved mothers to give them the same support that everyone else gets? Particularly because mothers of stillborn babies are at a much higher risk for postpartum depression, PTSD, anxiety, etc.

Dr. Ruta Nonacs, discussing miscarriage in her book A Deeper Shade of Blue, says "Experiencing a stillbirth or neonatal death probably puts you at an even higher risk for depression; one study indicated that a mother's risk for depression after stillbirth is about seven times higher than a woman who has a live birth." And another study (click here) confirms that link.

So why are we ignored?

My husband and I have a large network of friends and family who have supported us through this tragedy, but so many other couples don't have that. Even I, with all of the support and understanding that I have been gifted with, feel let down.

I hope that parents like us continue to speak out about their experiences and let the medical community know that we should not be ignored. We are still moms and dads, and we still need support. That is why I plan to contact Eastern Health about our experience. I will update here about any responses I receive.

Blaming God

I have run across several threads on loss forums in which parents blame God for the death of their child(ren). I have wanted to comment, but don't want to give the impression that I do not understand the pain, anger, and bitterness. The seemingly bottomless grief that can well up at a moment's notice. I also haven't wanted to spark any religious debates in a place that is meant for support and healing. There is a time and place for all things. So I will respond here from my perspective. You may not agree with me, but please know that I would never belittle your grief and that this post is not meant to judge. I do know how it feels. This is just my journey. I hope this is coherent...

Even on the day we found out that Haven had died, it never occurred to me to blame God. I was, and am, crushed, but blame for God never entered my mind. This world is often a cruel place. I grew up poor, with a mean, abusive, and mentally ill father. My mom was a shell of a person for many years due to crippling depression. Fear and anxiety were my constant companions. Abuse of every kind was rampant among my extended family on both sides, and the same goes for mental illness. My aunt also lost a daughter, Katarina, at full term and only got to glimpse her before the nurses whisked her away. I lost a cousin at 31 to cervical cancer. She was a gentle soul and mother to a little girl. My father-in-law died at 48 after suffering through severe illness for 11 years (crohn's, a liver transplant, medically-caused diabetes, cancer, then a prolonged, excruciating death). He was a minister and a good, kind man. His mother died young from breast cancer. And then my daughter died suddenly at the height of my joy and the most precious thing in my life was ripped away. All of these things are unjust, unfair. But terrible things (genocide, war, murder, rape, forced prostitution) happen around the world every day and I never once blamed God for those before, believing that they are all a part of this broken world full of broken people. Why should I blame him when the pain lands on my doorstep? And I won't pretend I'm not in pain. It's on every breath, in every movement, in every thought and prayer and wish.

Faith is a choice, or rather, a long string of choices. Today, I choose to believe in God's goodness. Today, I choose to believe that God has a plan. Today, I choose to believe the promise that all things work together for the good of those who love the Lord. Either I believe in God, or I don't. Faith is not dependent on circumstances. In the Bible, God never guaranteed that life would be easy and that we would always receive what we want (unfortunately, a lot of Western teachings imply this). You need only read the stories of those in the Bible who went through unimaginable things to see that their faith did not bar them from pain. The point is that God is there with us through every one of the difficult things we walk through. He knows our pain, weeps with us, and strengthens us if we allow him to do that.

I have read facebook posts by atheist friends who imply that it is the weak who cling to faith. But to be honest, it takes serious strength to choose a life of trust and surrender in the face of loss. It would be much easier to sink into hate and bitterness and anger and never crawl out of that place. In choosing faith, I am choosing life. God sees my life from its humble start to its humble end, the good and the bad, and he has a plan. I may not understand it, but I trust him. I know that God sees all that has happened and all that is to come, but I don't believe that he caused Haven to die just because he knew that she would. Our minds always want answers, but the truth is that bad things happen to good people. Every single day.

I think it's important not to deny our feelings, but to acknowledge them. Today, I am pissed off and I can't stand the sight of pregnant women or kids. Today, I am terrified that I will lose another child and I'm angry that I have to feel this way. Okay. I let myself feel it. Sometimes I spend entire days feeling angry and ripped off. I believe that anger is a part of grief and should be felt and expressed fully. But I look at my feelings this way: these intense feeling are temporary; they don't change my long-term, overarching feelings. Bitterness is not somewhere I want to set up camp. There is recovery. I really do believe that. It won't be tomorrow or next week and maybe not even next year, but there is life after loss. Someday I will smile again without forcing my lips into an upward direction. There will be pure joy again. Have I lost innocence? Yes. And I'll never get that back. I'll never know pregnancy without fear again. I might never even know the joy of mothering living children. But I choose to believe that I will be okay in time, no matter what.

I choose faith.

Because this is a sensitive topic and I do not want debates on this blog, I am going to close comments on this post. But if you would like to talk about this with me, please do send me a private message.

Do It Anyway

I have been thinking a lot this week about life with grief, and the life to come after. This line of thinking was prompted by an episode of Call the Midwife (my guilty pleasure tv show). In one of the episodes, the main character has lost someone. One of her patients, a Holocaust survivor, says to her, "You will feel better than this. Maybe not yet. But you will. You just keep living until you're alive again." Simple, but profound. Because when you lose what is most precious, a part of you dies too. I don't think I'll be the same me when this grief fades, but I do know that I will someday feel joy again.

I read a blog post today regarding fear and our response to it. The blogger's fear was linked to following through with a desire of hers. She went on to say that her theme for 2014 was "do it anyway." I really liked that, and I've decided to adopt it. See, I'm riddled with fear right now. Fear of venturing outside my house. Fear of returning to work in June. Of not being able to bring a living baby home to stay. The fear of all of the days without my daughter that stretch before me like a never-ending sea of sadness. I am realizing that the only way to the other side is straight through. I need to give myself time and space to grieve, but I know I can't stop there.

I don't agree with people who think that you need to deny your struggle in order to overcome it (fake it 'til you make it). I think that real courage is looking your fear in the face and forging onward in spite of it. So right here and now, I am making the decision to choose life and hope and to "do it anyway." Despite the fear, I am going to move forward. One step at a time. One anxiety attack at a time. One tear-filled night at a time. I am going to summon all of my courage and do it anyway. I'm going to live until I'm alive again.

I took a small step yesterday. I was wandering around Walmart and I saw maternity clothing on clearance. I bought four shirts for when I am full term next time, even though I don't know if I'll ever have that wonderful experience again. It made me feel anxious, but I rang them through and brought them home, where I promptly ripped off the tags so I wouldn't chicken out and return them.

As if to cement my thoughts on the subject, I received a package in the mail today from a friend in Tennessee. She had been sewing a gorgeous quilt for Haven while I was pregnant and finished it the day she found out that she had died. I opened the long-awaited package, and accompanying the quilt was a beautiful, handcrafted glass heart. I immediately knew that this would be my symbol of hope in the months to come. I hung it in the nursery so that I can peek in and see it whenever I need a reminder.

When I logged in today, I noticed that my page views had doubled since the last time I logged on. If you find yourself here, I want first to tell you that I am so sorry that you have felt the grief that comes with the loss of a child. But I hope that you find some comfort in reading about my journey. It's ugly at times, but I hope it all leads to a joyful end. Please feel free to comment or to contact me privately if you would like to.

Music For a Broken Heart

I wrote last week about comfort and the things that help me cope. One of those things is music. My husband and I are compiling a list of songs that I'll post here when it is complete, but for now I'll share an album that has been helping me through this fresh grieving process. The album is by Karla Adolphe, and it was inspired by grief. I hope anyone who finds themselves here will enjoy it as I have...

Free download: http://www.karlaadolphe.ca/

Soundcloud (streaming): https://soundcloud.com/karla-adolphe/sets/honeycomb-tombs/

Comfort

I have read so many websites and forums and blogs about families who have lost like we have. Everyone has their own set of thoughts or beliefs that bring them comfort. I just wanted to share the things that help me. I know it's not the same for everyone, but these are the things that keep me going...

When I was pregnant with Haven, I remember thinking about how she was special, the product of one of the millions of eggs I was born carrying inside, and one of the approximately 525 billion sperm my husband has produced/will produce in his lifetime. That she was the best of the best; the "best" egg chosen by my body to be present that month, and the strongest of my husband's sperm over those few days. If we had gotten pregnant any other day or month, she would have been an entirely different person.

I also learned yesterday, while scouring blogs (I do little else lately), that there is a fetal cell migration from baby to mother during gestation. Those cells go on to live inside the mother, sometimes up to decades later, finding new homes in her eyes, heart, brain, etc.

These two thoughts together bring me comfort. They mean that I have always carried a part of my daughter with me, through my childhood, through my teen years, through every good and bad decision, every up and down. We were always together. And if her cells live on inside of me, I'm still carrying a part of her.

Though my faith feels complicated right now, I find comfort there too. I don't pretend to know God's thoughts or His plans, or how they all "work together for the good of those who love Him," but I believe that no person, however small, goes unnoticed or unloved by Him. I believe He grieves with me. The Bible says, "Are not two sparrows sold for a penny? And yet not one of them will fall to the ground apart from your Father. The very hairs of your head are all numbered. So do not fear; you are more valuable than many sparrows." It also says, "You made all the delicate, inner parts of my body, and knit me together in my mother's womb." That means that God put together my little girl, cell by cell, and He loved her far more than I ever could (and believe me, there is not much that is fiercer than a mother's love). I don't have His eternal view, and I don't know how this (relatively) small event and Haven's small, sparrow life fit into the course of history, but I believe she was significant, nonetheless.

Yes, I am so, so angry and bitter some days that it eats me up. Sometimes I can't even catch my breath for the pain of missing her, and everything is just ashes in my mouth. But yet I find beauty and, yes, even joy in my life. Even in this disaster, this unfathomable tragedy, I have found joyful moments. The moment she was born was the most beautiful and terrible moment of my life. Even my long labour (38 hours from induction to her birth) had moments of awe, of stunning beauty. It was almost a holy experience.

So, yeah, I am totally wrecked. Losing my baby, my Haven, was like having my heart ripped out, then being told I still had to go on living somehow. I will never, ever, be "over" what happened, nor will I ever not miss my baby girl, not wish things were different, not ache to hold her. But I think that all of these things, the anger, the agony, the emptiness and loneliness, and then the joy...it's all a part of grief, and I intend to feel it all to the fullest. How else can one rebuild and move forward? I will take this anguish, these broken pieces, and allow God to form it all into something good. I think I owe that to my little girl. Surely she wouldn't want me to be sad, and angry, and bitter for the rest of my life?

I'll keep on living, even when life seems too empty to bother. One trudging step at a time. Breathe in, breathe out, and repeat...