My question: To do or not to do?

The new doctor rang yesterday to report the results of my blood tests. For the first time I didn't look at the blood request form to see what tests he requested, but it didn't matter because he reported that in his opinion my homocysteine levels are normal (at 9.6) and he thought my kidneys are also normal.

On hearing this, DH's whole demeanor changed before my eyes. He is convinced that the time of looking for answers for the reason for our infertility is over. He believes we just need to try IVF again (and again) and see whether it works.

In some ways I agree with him. I'm ready to just try again and see what happens. Our RE did tell us that by doing limited fertilisation it will take more cycles to conceive. The answers don't seem to be coming for us, and if they do they are controversial and the controversy between doctors is doing my head in.

However, it's difficult to change mindsets about my infertility. For years I've felt like something is wrong, but it hasn't been obvious to me or the medical community what it is. Even my diagnosis of endometriosis seems so cloudy, unclear and lacking definition. No one can tell me HOW it effects me and my ability to conceive and stay pregnant. And I want to KNOW. Why? So I can overcome infertility and be a mother. Many of the blogs I read have women (and men) who have found out what medical conditions they have and seemingly BAM...they are pregnant and problem solved. I know this is a simplistic synopsis that doesn't account for the pain in the journey, but it's this pattern, TTC-no baby-tests-diagnosis-treatment-baby, that stands out for me at the moment.

So now I'm trying to not seek answers, and it's HARD! My first instinct is to run to Dr Google. Then I want to book in with my naturopath again. Then I want to go to the only doctor who tests for NK cells in my town (the only thing I think I haven't been tested for yet!) I want to read even more on MTHFR, I want to see if I can import Ne.evo into Australia (I don't think I can). It's so hard to not DO anything.

Is it the right thing to not DO anything? To stop looking for reasons for my infertility? To stop asking why?

Meh...

Yesterdays doctor's appointment did not go as expected. Essentially he scoffed at the MTHFR and homocysteine diagnosis, saying that it makes no difference to a woman's ability to conceive or give birth to healthy children, and suggested that the doctor who made the diagnosis gets excited by blood test results that she shouldn't be excited by.

When he said this, so bluntly, I felt the world collapse from under me and I couldn't stop crying. I realised how much hope I was putting in this diagnosis being the answer to all our problems. As you can tell from my last post, I was expecting that we would have a clear direction after yesterdays appointment; a decision of whether we would stop or continue IVF.

So the appointment didn't turn out like either DH or I expected. It did not give us the direction we are so obviously craving. The doctor did send me for blood tests to recheck my homocysteine level (I have no idea why) and suggested that is might be a marker for something else wrong in my body. He seems to be thinking there might be something wrong with my kidneys. At this point I was feeling a little incredulous. I mean, who cares about my kidneys when my entire reproductive system isn't working!!? DH explained to me (putting his medical hat on for a moment) that the kidney's regulate hormones and have a great deal to do with fertility.

So. I'll get blood results back on Thursday or Friday and I have a couple of tests/ultrasounds I'll need to get to in between Christmas, New Year and holidays.

We're not completely decided as to whether we will continue IVF in 2011. I feel so very fragile emotionally and I feel I won't be able to bear another loss. Also, I can't help wondering if the feeling I had back in my early 20s that I'll never be a mother should be heeded. I know feelings can be just feelings, but I want to hear God's call on my life and I plan to spend the holiday break praying and listening to God.

The end feels nigh

Well it has been a terrible few months, but now my computer is (finally) up and running again I can begin to process in blogging form what has happened. After our miscarriage in July (wow, time flies!) I developed a thyroiditis, which first made me hyperthyroid. This went undiagnosed for months and I thought I was going crazy or was clinically depressed as I was not sleeping, not eating, agitated, hot all the time, highly stressed and anxious etc etc. Thankfully it was picked up when we went to a doctor who specialises in recurrent pregnancy loss who ran a whole battery of tests. Interestingly, as we were monitoring my thyroid over a couple of weeks, it went normal one week and then hypothyroid the next, where it has stayed. We met with an endocrinologist who put me on thyroid replacement hormone and I have started to feel "normal" in the past few weeks, which is a welcome change! Evidently my thyroid issues won't effect us doing IVF in the new year, we will just need to monitor my levels and adjust medication if it's required.

However, DH and I do find ourselves at the "pointy end" of our TTC journey. The recurrent miscarriage doctor diagnosed me as compound heterozygous for the MTHFR gene, with elevated homocysteine levels. She put me on high dosages of folate and B vitamins, but we recently discovered that this treatment did not lower my homocysteine levels as would be expected. She said she had another patient in this situation who had to import ?Be.taine from the US, which dropped her levels and she is now pregnant and will give birth in the new year. However our doctor does not feel comfortable (for a reason I do not know) to recommend Be.taine for us so she has referred us to (yet) another doctor who we will see next week. Evidently he is quite the specialist in the area so I look forward to meeting with him.

In all the reading I have done high homocysteine levels are associated with implantation failure, recurrent pregnancy loss, pre-eclampsia, early delivery, and issues in children such as neural tube defects, down syndrome, and even autism spectrum disorders. Until such time as we can (hopefully) lower my homocysteine levels I feel unwilling to undertake IVF again because I don't want to put myself or my child at any increased risk. So that's why we're at the make or break stage now. Hopefully this new doctor will be able to reduce my homocysteine levels and we can restart IVF in 2011. If not, we will start to prepare ourselves for the end of TTC and working out what will be next for our lives.

Sometimes I feel hopeful that this will all work out the way I have wanted it to for the past 3 1/2 years - with me birthing and parenting a healthy child. Other days I feel so close to never being a mother that it takes the breath out of me and I feel like I can't move. Sometimes I enjoy not having kids and the quality time I get to spend with my wonderful DH. Other days my heart, and even (it seems) the walls of my home, cry out for the company of children and I miss my children in heaven so much.

God is showing me through all of this that everything I have, even myself, is His. My life, my husband, my home, the lives of our children, our material blessings, all of it belongs to Him. He gives and He takes away. And He does all things for His glory. I am trying to use those things He has given me to bring Him the glory He deserves. Praise be to God!

MIA

> Just when I'd planned to get back into regular blogging and
> commenting, both my computer and Internet connection broke down.
> Aargh so annoying! I've spent 30 minutes trying to figure out how to
> post via the email on my phone. I'll be back real soon so be
> prepared, I think I finally have lots to say!! :)
>
>

Control

One of the biggest problems I have is with feeling out of control. When I'm feeling this way I speak without thinking, I cry, I argue....essentially I can't pretend that I'm a nice person. I've always looked at people who appear always friendly, always smiling, always nice and envied them. I don't think I'm a "nice" person. I like to debate and argue, I'm emotional, I think and analyse, I like to say what I think. Generally I balance this with love, compassion and empathy towards others, but when I feel out of control I am a selfish brat who feels and reacts and doesn't always consider the needs of others.

Since we lost our son I have been feeling so very out of control. I've been angry, grieved, jealous, devastated, hopeful, questioning, fearful, guilty. I've been afraid that most of my friends and family can't handle me this way, so I've, for the most part, stayed away from them. Usually I think this has been an ok decision, because most of my friends and family truly can't handle me when I'm emotional. Most people I know are even-tempered and would be easily shocked by an outpouring of emotion or a questionning of God, my life and my role.

There are a few people, however, who will take me as I am and push me onto greater things. My DH, my very-fertile-friend, my now-pregnant-fellow-infertile-friend, my single friend, my sister. And in the past few months I have realised that God too accepts me as I am, as he made me, as he knows me to be, and similarly he wants to make me grow and change in him.

I've been playing a big avoidance game; from friends and family, from life, from this blog, and from God. DH and I recently started what we like to call our "spiritual" journey. After having been Christians for years we were challenged by a friend's journey into the spirit-filled life. A long story made short, it has resulted in us reading "Celebration of Discipline" by Richard Forster. One of the powerful lessons for me has been that God can use my prickly bits to relate to me. Through meditation and prayer (the first 2 disciplines outlined in the book) I have learned to use my imagination, my visual thinking, my analysis, emotion and honesty as I speak and relate to God. And he has spoken back!

And you know what he has shared with me? That I can wait on him, trust him, let him be in control. God is working on my control issues and helping me be happy with who I am, in him.

I was going to share the practicalities of what has been occurring in the past few months, but the issue of control in my life was like the white elephant in the room and it needed to be exposed. I have treated the blog-o-sphere like my friends who can't handle my raw emotion, I have seen it as something to be controlled, as a space for my friendly thoughts, nice manners and happy face. I don't know necessarily what I want it to be, what it should be, but it's a collection of (some of) my thoughts and feelings and that's ok.

I don't know anything

It's been a while since my last post, and who knows, maybe no one will see this post because you've all given up on me. It's obvious to say it but I haven't felt like blogging lately. I find it difficult to write when my head is full of thoughts and feelings that I can't make sense of. Certainly my last post had me questioning whether it was right for us to continue with IVF, whether we would ever be pregnant, whether we would ever have children.

So imagine my surprise when I found out I was pregnant.

Yep, pregnant. (But don't get excited, this story doesn't have a happy ending). We had decided to do a long down regulation IVF cycle to see if it would suppress my endometriosis. We also decided that we would grow out any embryos to day 5/blastocyst, thinking that they would be stronger and survive their introduction into my womb better than if they were younger.

So we transferred one "perfect" blast and hoped for the best. I went in 2 days early for my BT since I had had implantation difficulties previously. HCG = 42. Not high, but definitely pregnant. Two days later, HCG = 72. Not exactly doubling, but Dr Google assured me that doubling time could take between 2-4 days. Three days later, HCG = 160. Ok, we're pregnant, let's wait for the scan. First scan at 7wks5d, heartbeat = 131! There's a real baby in there! But FS concerned and wants to have another scan because baby is measuring a few days behind. Second scan 8wks5d, heartbeat = 158 and baby has caught up 9 days worth of growth in 7 days. Yay, starting to feel excited and graduate to OB.

OB appointment at 10 weeks, no heartbeat. Baby has died. D&C scheduled for following week.

Grief follows. Yesterday I would have been 12 weeks pregnant. We had less than a 5% chance of miscarriage after seeing the baby's heartbeat. One of my best friends is 15 weeks pregnant today.

I thought I knew. Then I realised I didn't know. Now I know absolutely nothing.

Knowing

Can I know? I mean really know in the deep recesses of my mind and soul that I will never bear children?

When I was about 10 years old I told my Nanna that I felt like I knew things, knew them before they happened and wasn't surprised when they did happen. She told me that she believed the women in our family have such a gift of knowing. I was 10 so I took this as fact and didn't ask about it further. She died when I was 16 and I never talked to her about it again.

From childhood I knew that I would die at 20. This isn't as morbid as it sounds. It was one of those thoughts in the back of my mind. A statement similar to "I am going to school today" in its weight and yet not as immediately obvious as to its truth. I was convinced it was true. Yet it didn't impact me greatly, I was young and I still planned and dreamed for my adult life. The thing is, I did die when I was 20. Not a physical death, but a spiritual one. A month before Easter in the year I was 20 years old I was given the gift of faith, and as such counted myself "dead to sin but alive to God in Christ Jesus" (Romans 6:11). In scriptural words my old sinful self died and I was born again (John 3:3, 1Peter 1:23).

During high school I became convinced that I would lose my first child. Again it was a calm knowing, a quiet fact, one that didn't bother me as much as impending exams, hormones, friends and boys. Since that time I have miscarried my first child, and numerous others.

In the weeks following my conversion to Christ I had a strong knowing sense that I would never have children. I talked about it with my Mum and she shared she had always feared that would be true for her too, and yet it obviously wasn't and she told me not to worry. At the time I wasn't worried about it. Again it was simply a fact, a deep stirring in my heart with no immediate implications as I wasn't in a relationship and had no plans for marriage.

During this most recent IVF cycle I knew I would get pregnant. I've never known before, never had that deep confidence that I would conceive. I've hoped, prayed, and misinterpreted symptoms, but never known I would be pregnant. I find myself almost unable to explain how I knew (and how I didn't know it wouldn't continue). It seems ridiculous to me, a trained scientist-practitioner, that I would support a theory based on gut instinct without any tangible evidence. Then again, I suppose that is what (a simplified view of) faith is.

So as my DH and I face another IVF cycle I am pondering this question: Do I know that I can't have children?

There is no medical evidence that I won't conceive or bear a child to term.
I do not have a direct revelation from God saying that I won't have children.

And yet I have had a feeling for 10 years that I won't have children, and a growing heart and love for children in need. Years ago my DH and I discovered our love for children, not just our hoped-for own, but all children, in all circumstances. We planned (huh!) to have a couple children of our own and then to foster children in need, to combine our desire for a big family with our heart for struggling and lost families.

I feel terribly confused. I think that the answer won't become apparent until it's the right time, but I could do with some guidance.