Second Appointment at the IVF Clinic

So today we met with the PGD nurse at CARE, she's lovely. We had some blood tests - they screen rubella, HIV, chlamydia and so on before treatment can start.

She advised I wait until my iron levels are raised a bit before taking Provera - she recommended waiting until about August 20th, and having a blood test to check iron levels before then. That seems so long away! Depending on whether I take Norethisterone or not (which depends on whether I get a withdrawal bleed following month on the Pill), embryo transfer should be either around October 20th or November 20th.

I really want to start Provera now (so impatient to start!), but I think I should follow the clinic's advice and wait. I don't think this period is going to come and I suspect that's down to anaemia as that can cause them to become irregular. I don't feel PMT-y any more, and my skin seems to have cleared up a bit.

I asked why I have been prescribed Norethisterone and why the clinic want me to have so many bleeds before cycling (the nurse was amused by how confusing my Protocal is), and she said the idea behind Norethisterone is that it helps the eggs develop evenly, giving a better outcome, and that it is a good idea for me not to have any old womb lining remaining when treatment starts, as my womb might try to shed it when embryo is in. With such good reasons, I feel much happier about the delays and continuing with the Protocal as recommended.

In which PGD is saving me

Well, I've seen a few of these synchroblog type things around lately (I've not really been looking at blogs for very long at all!), and I thought, why not give this one a go? There is something I'm very thankful for, and I want to speak out about it. But I'm also scared - about making this not an unknown, anonymous place. (Actually this place and the places of others have been saving my life this week! But that's not what sprang into my heart to write about.)

What is saving my life right now?

A magical bundle of hope, grace, life, and opportunity; all found for me at CARE fertility in Nottingham. And in particular these events of the past few weeks:

• A man called Dave Gifford (I hope it's ok to write his name here!) who works for the East Midlands PCT or somesuch and was kind enough to email me quickly and personally with the news that having PCOS does not bar us from unlimited funding for IVF PGD (due to my balanced translocation). His kindness and generosity of spirit means so much.
• The family we met at church who have walked our road already.
• And then the miraculous news at our first appointment at CARE (June 21st) that unlimited funding is not limited to one child. And that we can begin 'right away'.

My world has changed so much since June 21st that it is now unrecognisable! I am so grateful that we may be able to have Light and Prophet.  Was I really 'ok' with having one child? How much wider I can dream now! Was I really ok with waiting for up to 6 months for them to develop a probe? Now I am struggling to wait a few weeks for my period to come!

I am active in a facebook forum for my particular translocation, and I know women there who feel strongly that PGD isn't 'Christian', as do others, and so I struggle to be bold in my choice and brave in writing about it. It is not for me to say what is right and wrong. I don't know God's mind and I don't claim to.

(I will write about my thoughts about the ethical issues around PGD sometime, but I don't have any answers.)  

I pray, as Thomas Merton prayed, that "the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing." 

I hope that our belief that He has been leading us here is in fact correct. And if it isn't, I hope it doesn't upset Him too much. Because with how much our lives have changed in the past month or so, it is hard not to believe more than ever that this surely must be God's plan for our lives.

Thank you so much Lord for blessing us with such abundance. If this isn't the path you have for us, I hope that I will be able to give it back to you with grace, trust, and hope, however impossible that may seem right now. But I am so grateful that this thing is being done in our lives. The ability to hope and dream that is coming out of this is saving me. 

Thank you Lord, that you are blessing us in this way. I pray with all of my heart that this blessing would be available to all heart-mothers in this world. I pray that my translocation sisters in other counties and in other countries, specifically those in America where medical care costs so much, would have the opportunity to be blessed in this way if they so desire. 

I thank you for this new thing, and I honestly struggle to believe that anything that feels like this does could be wrong.

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Linked with Sarah Bessey at http://sarahbessey.com/in-which-we-are-saved-synchroblog/

Baby Brain!

Well, I've been feeling a little better, and so I should be doing my work... But I'll let you in on a secret: I haven't been doing much work at all. (Normal people would probably be ok with this, having been under the weather... Not me! I tell myself off a lot!)

I have baby brain already. I try to work, but I get distracted and look at baby things instead. Pictures of babies and pregnant friends on facebook. Baby blogs. Birth stories. Pregnancy and birth advice. Where to give birth. What to buy for a baby... The list goes on!

I felt quite silly doing this. Until yesterday, when I realised something. I began to plan for getting married a year before darling hubby and I got engaged. I knew we would do, somewhere deep inside (even though my rational brain often doubted, as now), and so I began to prepare. I had a lot of preparing to do. I had a lot of baggage and fears about marriage.

And now the situation is the same. I have a lot of baggage about birth, babies and parenting. I coped with the wedding baggage by really focusing on the planning, and especially on my relationship with God, and with addressing the fears that came up and finding ways of coping with the stresses and anxieties.

All I'm doing is putting the same coping mechanisms in place for baby.

When I'm pregnant, I'll feel as prepared as can be. When I give birth, I'll be as prepared as I can be. And when we bring baby home, the same again.

Preparing for the wedding meant I had a better day than I could possibly have dared hope.

But so much more than that, I felt so ready to get married. And that's something I didn't expect or hope to feel.

You know what? If this baby planning stuff doesn't make much sense to me now, and even less sense to other people (my counsellor seemed concerned! after 18 months there are still things she doesn't understand about my brain), that's ok. In the future, why I am doing this now will make sense. I will look back and see what this preparatory work helped create.

There's a lot going on in my life at the moment. I have huge anxieties around work, studying, parenting, IVF, and birth. Plus I'm changing my diet, and am walking the dog less because of the tiredness and busyness, and with my food and self-image issues that puts quite a large amount of stress on. (Pleased with how my diet's going though - it's great! I'm doing so well! More about that another time maybe. Couldn't have believed I could do this even a year ago.)

Ultimately, I guess I have to navigate my way through these challenges - and what exciting challenges! - as I do everything else: by muddling along, following my instincts, trusting my instincts (or at least trying to!), and trusting that a pattern will become clear afterwards.

The Lord doesn't do things without reason - that I have seen so far. I remember planning my wedding - obsessing over it, even - before engagement (I am not a girl who grew up doing this! it was a new experience!), and feeling so silly. What if it all went wrong? But you know what - it didn't; it went perfectly; I have a dream of a husband and a dream of a life... And that time preparing beforehand helped me so much in not feeling overwhelmed and swept away.

This is how I am. It's how I roll. I'm cool with that. And pleased to have learnt something new about who I am and how fine and dandy it is!

Anaemia and PMS

Today is day #11 of PMS symptoms. AAAAAAAAARRRGHHH pretty much sums it up!!

We received Provera (to help me have a period) in our box of medication goodies, but I was already PMS-ing by then so haven't taken it yet. I really don't want to take it as:
a) I'm going to be submitting my body to a lot of really harsh treatments over the next few months.
b) I always get side effects from drugs: if there are side effects to be had, I will have them.
c) If I'm getting a period anyway, taking pills to bring one on is a bit redundant.

I saw the GP this morning, and she was in agreement that I shouldn't take Provera.

Since stopping the Pill (September 2011), I have had three periods, and with each one, I have had PMS symptoms for around 2-3 weeks prior to bleed. (I was taking the Pill from early 2009, and before taking the Pill, I had PMS the night before my period, and that was it. However, in my 2 1/2 years on the Pill, I didn't have a single bleed - weird, huh! - so my theory is that is causing a lot of the craziness I have since coming off it.)

With these prolonged PMS attacks, I have been getting: sore back (on my tailbone), bad skin, swollen sore boobs, swollen tummy, and of course, lovely emotional symptoms like fatigue, emotional instability (tears!), irritability, depression, increased anxiety.

However, as my health hasn't been great the past 3 months or so, and I have been feeling really fatigued and life seems to be draining me much more than it was, I wondered if something else was underneath. Lo and behold, I have anaemia! Good to put a face to the enemy; hubby is picking up iron tablets today. (Anaemia showed up in bloodwork I had done a couple of weeks ago; had the results this morning.)

While I am so very, very keen to come 'on', and have been feeling so miserable for the past week, I also realised this morning that I am once again impatient, trying to rush ahead, and am not trusting that, as it says in Romans 8:28: "in all things God works for the good of those who love him".

Ephesians 3:20

And so I woke up with this verse in my head this morning, and I felt so full of joy it was uncontainable:

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us

And I knew it was the Lord, reminding me of how completely vast and infinite His power is, how great His love for me, and how small my faith, because a) I never get verses... I have a rubbish memory for numbers and particular phrases and I just don't have any verses that I can recite, and b) I haven't got to Ephesians in my Bible study yet, so I've never actually read this verse.

It reminds me of something someone dear (and wise) said to me; that to see all the options in front of us leaves God out of the equation. How true that is and how completely humbled and in awe I am right now.

I was so wrapped up in whether we'd get funding for ONE kid, the thought that He might do a complete and utter MIRACLE never even crossed my mind.

How I love the Lord. He cares for me so well.

First PGD Appointment

Today we had our first PGD appointment at Care Nottingham.

WOW is all I can say!!!

Again, to echo my last post, God is good! (Why does this always surprise me so much?)

1) We not only have the unlimited funding already in place, but we are also funded for subsequent children. Like... WOW. It was a completely jaw-dropping moment; I don't think I've ever been so amazed in all my life!

And the news keeps getting better...

2) We can get going right away. The info sheet we had from Care prior to the appointment prepared us for a 3 month wait after this appointment. The couple we met on Sunday had a 6 month wait (at Guy's Hospital London) after their first appointment. We can get going... now?

3) The odds of it working are WAY better than we were led to believe previously. Care do "Array CGH" (Comparative Genomic Hybridization). They have been doing this for PGD for the past two years (replacing the FISH procedure). I guess the FISH procedure led to the 1/5 statistics we were quoted at Leicester Royal. With CGH, Care had 50% success rate in 2010, and 30% last year, leading to an average of 40%. And for those that produced a healthy embryo and reached implantation, in 2010 80% succeeded, and last year 55%.

So I worked out (such a stats geek!) that on our first go, we have a 40% chance of it working, a 32.5% chance of it producing a good embryo but not implanting, and a 27.5% chance of there being no viable embryos (that will not happen in Jesus' name!).

With the NHS funding, we get two funded cycles to see if we produce viable embryos.

The only not so great news - my ovaries. The PCOS is severe - my antral follicle count is 70+ (a high count is 30+). Because of this, I have been put on metformin right away. Then in July I am going to have drugs to bring on a bleed, then take the Pill for a month to bring on another bleed, and we will cycle on day 18 of my cycle after that. I'm going to have the Short Protocal, and daily monitoring (because of the high count).

In regard to my ovaries, 2 Corinthians 12:10 keeps coming to my mind: "When I am weak, then I am strong." His power is made perfect in my weakness. Your will not mine, Lord.

Having such a high antral follicle count seems to have good and bad aspects:

• "When there are an average (or high) number of antral follicles, we tend to get a "good" response with many mature follicles. We tend to get a good number of eggs at retrieval in these cases. Pregnancy rates are higher than average." 
• "High count, watch for polycystic ovary type of ovarian response.
  Likely to have a high response to low doses of FSH product.
  Higher risk for overstimulation and ovarian hyperstimulation syndrome.
  Very good pregnancy rate overall."

(http://www.advancedfertility.com/antralfollicles.htm)

If I get severe OHSS, the cycle will be cancelled, and embies frozen on day 1. I am pretty resigned to getting mild OHSS with such a high count (perhaps I shouldn't be, and should be walking in greater expectation of miracles!), but I am pretty hopeful that they will be able to keep it mild with the constant surveillance and extra attention they will give me.

Such a high count basically means (I think) that I am extremely fertile in IVF terms (yay me!!) which is much better than having limited fertility... So it may take us a while to get there but get there we will. 

I have been on a more PCOS friendly diet for a few weeks now. It make me feel better if nothing else.

Thank you Lord so much for all your kindness and graciousness.

I LOVE that we might have the Prophet and Light!!!!

Amazing Grace

A few weeks ago I asked our small group leader if she could set us up with anyone at church who had been through IVF/infertility. She responded a few days later and said she had someone - and I was amazed as we already knew this couple! (Some background - we go to a church with around 2000 members, and we are not very involved/outgoing people so the pool of people we know there is pretty minute. We happened to meet this couple at a 'Newcomers Meal' last year. They were the only couple we really connected with there, and we talked to them all evening. I remember I was very nervous - I can be very anxious socially - and was so relieved we found a couple with so much in common to talk to. Little did we know how much we have in common!)

So today we were introduced after morning service. And guess what...? She is a balanced translocation carrier (different chromosomes) and they've had IVF PGD two times (yup, that's right, two cycles) and now they have THREE children. Not only did it work both times for them (pretty impressive at 1/5 odds a cycle) but second time they had twins.

She said that prior to being diagnosed as a carrier, she had had five miscarriages. She said: "Have the doctors encouraged you to try naturally?" (Yes.) "Well, don't. IVF was a walk in the park in comparison to the miscarriages."

I felt like that was divine reassurance that we are doing the right thing! It addressed my specific concerns. God is good.

And the icing on the cake... She also has PCOS, like me.

What are the odds? BT carrier, with PCOS, having had PGD successfully - at our church? And we know them?

God is good.