The short story version: click here…
January 2011 — Conceiving by IVF
We implanted one egg. Our first cycle of IVF.
8 March 2011 — First Ultrasound
The doctor says: ‘No, this is not the placenta, you’re expecting twins!’
I say: ‘You must be kidding. Can it be that you’re making a mistake? We only put in one egg.’
Doctor: ‘No I’m serious, your egg has split, you’ve got 2 in there – identical twins.’
I cannot stop laughing from joy.
19 May 2011 — Twin B
At the 19 weeks ultrasound Twin B is diagnosed with cysts on the kidneys. No other abnormalities have been found.
3 July 2011 — Losing Hope
~~ 26 weeks ~~~
Yesterday I struggled not to lose hope.
As most of you know by now I’m pregnant with twin girls. Today it’s 26 weeks. I’m writing this note to you today as I cannot fathom talking about this more than is already happening in my head, and sooner or later one of you will ask me ‘How are the twins?’
In our 19 weeks scan we were told that one of our twins showed abnormalities in her kidneys. After our scan the girls got fed up of being called ‘twin 1’ and ‘twin 2’ and we chose Angel cards to give them ‘names in utero’. Since then we have been referring to them as Passion and Hope – very synchronistic as twin 2 chose Hope and she’s the one dealing with her malformed kidneys.
Basically the doctors and specialists couldn’t say for sure but mentioned that Hope showed cysts in both of her kidneys. They gave us worst case scenarios which I basically just didn’t take on, knowing that this is just one moment in time and things can change. Well, in the last 7 weeks they have not changed much and after our scan and specialist’s appointment yesterday they told us that it is very likely that Hope will be born with little or no kidney function. This might mean that she might live for hours/days/months and that the most likely neonatal management will be palliative care.
This time it hit me hard. This time I understood that there is no operation or care that could help a newborn with this condition. I also got to realise that as long as Hope is in utero the placenta is taking over the kidney function and she is still with me – for now.
I’m writing this note to you as I want you to know that my intent is to be with whatever this process has to offer me. I’m open to feel joy as both girls are moving inside me, and also the pain, hopelessness, sadness, grief, anger at the unfairness – basically whatever is coming, I’m open to it. Some days I might be sad, some days I might not, any day as it comes and goes.
I’m not looking for your advice or suggestions. Even though they are well meant, sentences like ‘At least you’ve got another healthy baby’ are also not mending the feelings I have for Hope. Don’t be afraid to talk to me about the situation, if you can handle and accept where I am at any point. Please accept my state, you don’t need to fix or solve anything for me. Some days I might want to talk about it, some days I might prefer not.
I have no expectation from you with this note besides that I want you to know where I am at. Pregnancy and birth is in many cases a joyous experience. At times it is for me and at times it is mixed with a lot of sadness and sorrow – at least for me…
We might lose Hope and still be reminded to never be able to lose hope.
5 July 2011 — Excuse me?
The fetal medicine specialist tell us that they predict Hope will be born with little or no kidney function and that she might only survive for a few hours, days, weeks… This time it hits me like a big wave that smashes me down to crumble. My OB says that it’s too soon to make such drastic prediction and is upset with the doctors giving us this news.
Dear Hope and Passion,
I feel so connected to you both, feeling you moving inside of me every day and night. I already feel the sadness for the moment to come when I won’t feel you inside of me anymore. With the prognosis that we have for you Hope I’m feeling like it is a loan on ‘life’ that you’ve been given, a time for us to have you around, which might be much too short, much shorter than we could ever expect. Every day I enjoy that I feel you and can talk to you, imagining you being alive already. I love you so much. The sadness that I experience I’ve come to realize is out of this immense love that I have for you and Passion. A love I didn’t know existed…
~~~ being with what is ~~~
6 July 2011 — Being with what is…
I feel very connected to all women who go through challenges in pregnancy and birth and there are many more than we know as much of it happens in the privacy of our own hearts and heads. I’m only guessing that we don’t really know how to be with this immense sadness because it’s not something that is spoken about often.
Personally, at the moment, I notice that I’m still in conversation with myself and the girls a lot and I somewhat fear the interaction with too many people, the thought of meeting other people’s words tires me. In myself I can accept when I’m sad or angry or when I’m in reframing mood and in the ‘everything has its purpose’ state but I guess it’s the mismatch of those states (one in me, one in the other person) that I’m feeling a bit of hesitation about. I don’t even want to coach or counsel myself to a ‘better feeling place’ because I feel I would miss the opportunity of ‘being real’. Everything has its time and place.
At times I’m lost for words. There is simply nothing to say or do. I’m so exquisitely aware of this huge love that is here that holds it all like two infinitely large hands held together like a bowl. I’m amazed at this love, a love that I feel, the love for these two girls so huge that it is breaking my heart. I hear myself say to them “I love you so much” and repeating the words over and over again. It’s out of this love that I feel the sadness and the sorrow, the human part of my soul feeling the pain of missing out on the earthly experience that I egoistically want to share as a mother with those two girls. I want to eat the ice cream with them, see them twirl around in their summer dresses and watch Chris play with them. And I also want them to experience life as sisters…
Life continues. One breath at the time.
All your messages and emails have helped me be with what is so I want to thank you. Even if I don’t respond personally please know that I’m so aware of all your thoughts and thankful to all your positive thoughts, prayers, love and light.
~~~ 1 or 2? ~~~
8 July 2011 — 1 or 2? Living with uncertainty and unknown
My sister sent me an email this morning with a gift proposition of 2 wraps….
A few weeks ago we bought a double stroller, specifically for twins….
I’m thinking about things we still need like bottles, bath towels…
There are already gifts like teddy bears, clothes, shoes on our side board for the two girls…
I’m going into Limbo land of ‘What if we only get to take home one baby?’
I’m looking at the girls clothes hanging up in our bedroom and the cot for two girls, just example of all the joyous preparations we take.
There is always Hope. Hope wants me to plan for her and meet the sadness and sorrow that this brings. I’m ready and just as I’m writing this, the flood of tears stops and joy and gratitude joins the tears rolling down my cheeks. Hope smiles. Passion smiles.
Living with uncertainty and unknown.
~~~ hope & passion ~~~
13 July 2011 — Gathering Hope
Today I’m reminded to gather hope for Hope. She wants me to remain hopeful and allow for possibilities. This is where I can ask for your help.
Tomorrow we have another ultrasound scan and I’m wondering what will be… We have decided not to go back to the people who did the previous scan (2 weeks ago) because it feels wrong to have someone look at the pictures, who has already ‘written her off’. I’m wondering what the new team will see and I’m asking myself what do I really need to know to stay focused on being the best mother I can be to Hope and Passion.
I have been touched by so many of your responses – thank you. I have not been very social and even though I might not have responded, please know that I have read all your words and they have helped me be with what is.
My intent remains that I want to stay open to what this process has to bring. Now, 2 weeks later, I have days where I seem ‘normal’ and I have days where I’m feeling overwhelmed, lost and sad. I have however also decided that, as much as I can, I want to focus on the positive and possibilities.
Today I would like to share with you the outcome that I would like to envisage and I would also like to ask you to see this outcome when you think of us. If prayer is your thing, we welcome prayers, if you want to send blessings, light, love – whatever it is – please hold this outcome in mind:
Imagine Hope and Passion as two little healthy and happy girls joyfully running around and having fun. See the healthy cells in Hope’s kidney grow and expand to form working kidneys so she can enjoy her human experience on this planet. So be it!
I have got nothing to lose by being hopeful for Hope. If you can, be it with me.
~~~ keeping HOPE ~~~
21 July 2011 — Persevering with Hope and Passion
This week we had the next scan after the one that was full of devastation. We deliberately chose to have it done by another team and felt so lucky that a new woman sonographer with fresh eyes looked at Hope & Passion.
I was quite nervous leading up to the appointment that got postponed first and I really didn’t know what I could ‘hope’ for. Chris and I probably experience slight ‘scanning phobia’ and even though I long to see my girls on the screen I sometimes close my eyes and sing the Gayatri Mantra inside my head, which helps me focus on remaining centered .
I have decided not to spend any more energy on the prognosis we’ve been given before and, as I said in one of my last notes, focus on two little healthy girls playing with each other. They are definitely growing: Hope had put on 400g and Passion 500g within the 16 days since the last scan! This explains my enlarged tummy, where people ask me ‘Are you going to give birth to your baby soon?
Other good parts of the scan were the fact that they both still have enough water (amniotic fluid) to swim in, no sign of Twin-to-Twin Transfusion and I’ve been given another 2 weeks of pregnancy until we’ll see them again for the next scan and the suggested check of both of their little hearts.
I BELIEVE that all your prayers are being heard and I know many of you, those who have shared and those who haven’t, are thinking of us and the girls in many beautiful and supportive ways. I thank you from my deepest heart. I’m touched by so many of your words.
I BELIEVE that Hope has something to teach us that we don’t yet understand. At this moment she’s teaching me to stay focused on what is right now and very literally as I said: I’m full of Hope and Passion, 2.3kg to be exact. Their weight is my continuous reminder…
What has been, has been. What will be, will be. What is NOW, is.
I BELIEVE in Hope and Passion.
~~~ H & P ~~~
4 August 2011 — 31 weeks and Hope and Passion are surprising everyone, besides us…
I’m still pregnant at 31 weeks today and my obstetrician yesterday said: ‘Hope is doing surprisingly well.’ She meant: You are still pregnant, Hope is still doing well, has enough fluid to stay inside, is moving around…
I know from previous discussions with her that she always had ‘hope’ and didn’t agree with the devastating predictions of some doctors. That’s what I love about her. She’s been amazing and I’m so glad to have her on my team. She’s even getting her registration set up so she can give birth to my girls at Randwick Hospital, which is a hospital across town, where she does not usually work! And by the look in her eyes, this is some paper work to do… All she said: Don’t worry, it will be fine. She’s even got her friend, who works at Randwick hospital, on board who offered her her ‘theatre times’ and will help her in case of a c-section birth.
I’m in good hands. We are in good hands.
We always had and still have ‘belief’ in Hope and Passion.
Thank you for your ongoing support, we truly appreciate it.
~~~ xox ~~~
14 August 2011 — The space between the desired outcome and preparing for what might come
At times I feel challenged focusing on my desired outcome as the medical world around us is – doing the best they know how to do – wanting to also prepare us for what might come. I feel myself oscillating, as if being pulled out of my ‘meditation pose’ and plunged into momentary worry and fear.
In 2 days we are having our next growth scan, which is where we obviously are confronted with the medical world and that’s when I feel my peace and calm is getting wonky. I wonder if my ‘tummy ache’ which I had for the past 6 days is in any way related… and I’m also definitely getting rid of any ‘old, no longer needed stuff’ – If you know what I’m referring to…
I have found ways to better deal with it: singing mantras inside my head, looking at Chris rather than up on the screen (if I don’t feel like I need to see what they see) and talking to my girls.
What also helps is being surrounded by support and healing that focuses with us on the desired outcome. If that is you, thank you!
Living Without My Twin Sister 