5

Birth and beyond

Leading up to Hugo’s birth was an interesting time. Looking back on it now the time seems to have moved so quickly. We got the diagnosis just shy of 35 weeks gestation. Marian and David arrived in Brisbane a week later to prepare for what was to come. We had many plans for this time prior to Hugo’s diagnosis and despite our heavy hearts we still managed to enjoy ourselves most of the time. We had numerous appointments with specialists, doctors, neonatologist and midwives. When we found out what was to come our care had been changed from mainstream antenatal care to specialist care through the Mater Maternal Fetal Medicine Unit. The midwife that was overseeing our care was extraordinary. At every appointment she went above and beyond to ensure we knew what was going on and to plan our care so everyone was happy. I was hoping for a VBAC this time around but the factors were stacked against me. Hugo’s head was off the charts in terms of size (something we later learned was atrributed to his condition) and the amount of amniotic fluid present meant induction of labour was out of the question so I consented to the caesarean. I’m positive planning the birth of Hugo gave our wonderful midwife countless migraines, but she never complained.

When we had our appointment with the surrogacy liaison midwife way back in the beginning of our pregnancy we were told that if we were to have a planned caesarean then both Marian and David and a photographer could be present in the room, in fact this is stipulated in the written hospital policy. Suddenly we were being told then I could only have one person in the room and absolutely no photographer. This was extremely distressing to us as it wasn’t explain why they had changed their minds and we still didn’t know at this stage if Hugo would survive past birth. I didn’t want Marian or David to possibly miss the only moment their child was alive simply because the powers that be changed their minds. Luckily all it took was a quick email to the patient rep to get everything sorted and on the day, despite a little bit of fuss kicked up by the anesthesiologist we had Marian, David, Simon and our beautiful photographer Emma all present during the caesarean. The day of Hugo’s birth came quickly. The night before we all got together for dinner at our place and when Marian and David left I had a moment of abject fear about what was to come the next day. Would the baby live past birth? How long for? What if they’re all wrong and the baby is completely fine? Simon was very good at calming me and reminding me to take things a moment at a time. I slept remarkably well that night and we all turned up to the hospital the next morning with more excitement than fear.

The caesarean was incredibly uncomfortable to begin with. Due to the amount of amniotic fluid I was carrying, lying on my back was not comfortable in the slightest. When they started to drain the fluid it felt like a weight was being lifted off my chest and I immediately started feeling more comfortable. Turns out Hugo was born with a whopping 7.5ltrs of amniotic fluid. That combined with Hugo’s weight and the placenta, I lost around 12kgs in that moment! The only indication that Hugo had been born was Marian’s squeal that rang out across the operating theatre. Because Hugo was born in poor condition he was quickly whisked away before I got to actually see him. I had to ask Marian if it was a boy or girl! LOL. After he was born Marian and David were taken to the waiting room while the neonatal team worked on Hugo and the doctors finished my caesarean. The room Hugo was taken to was just outside the theatre so I could hear that they were working on him for quiet a long time. Just before I was finished in theatre, the lovely midwife who delivered Hugo came to tell me that he needed full resuscitation. I knew then that there was no way the doctors had his diagnosis wrong, a healthy baby doesn’t require full CPR and multiple doses of adrenaline to get it’s little body working.

I spent some time in recovery but eventually was taken to the nursery where I was able to meet the little guy and see Marian and David again. Before I even saw Hugo while I was being wheeled into NICU I saw Marian’s face. She was absolutely beaming! It had seemed almost forever since I had seen so much joy on her face and I was so happy that in that moment, all Marian felt was happiness and love. Hugo was ventilated and asleep. When I held his hand and started speaking to him he opened his eyes and blinked. I couldn’t get over how much he looked like both Marian and David and how much hair he had! When I took his hand I noticed his fingers were contractured which had been caused by his lack of movement. I spent a little time with Hugo and his parents before I went back to my room to get some rest. I was feeling emotionally strong – so happy Hugo was born and Marian and David were finally parents. I managed to get a good sleep that evening and woke dying to have a shower. I let Marian and David spend the morning alone with Hugo. They were constantly texting and visited the night before and that morning, I could feel the love they had for their son in every word they said and the looks on their faces.

The next day after lunch I went back down to the nursery to meet Hugo again and see Marian hold him for the first time. This was a defining moment for me during Hugo’s short life. Since the beginning of the journey I anticipated when Marian would hold her tiny baby for the first time immediately after birth. Smell his baby smell, feel his soft baby skin and hear the gorgeous baby noises he makes. This fantasy had been altered but it was still a life changing experience for me. As soon as Marian felt Hugo’s skin on her own the look on her face said it all. In that moment she was pure love and joy, I have never seen anyone radiate it more than her in that moment. For me I couldn’t stop the tears. That was the moment that I learned that my heart could be completely broken and yet so full of love at the same time. I was so heart broken because this was one of the only ‘first’ moments Marian would have with Hugo. Most mothers get their first hold or their baby…their first smile……their first words. For Marian, I knew her firsts with Hugo were limited and my heart broke that this had been taken from her. My heart was also bursting with love because you can’t look at a new mother in that moment and not physically feel the love she has for her much wanted baby radiating around the room. There were people everywhere in the room at the time – nurses, other parents and doctors, but it may has well only been the four of us; David, Marian, Hugo and myself, because this was our moment. I knew then that every tear I had cried, all the pain I had endured and every bit of heartbreak I had felt leading up to Hugo’s birth and what I knew I would feel after he passed away was completely worth it. I would do it all again in a heartbeat just to have that moment again. For those of you who haven’t seen the beautiful video our amazing photographer put together of Hugo’s first two days, including Marian’s first cuddle you can see it here.

From then on I was scared for what was to come. The next day the neonatal team called a family meeting with Marian, David and myself. I was already feeling emotionally fragile and I so wanted to keep it together and be strong in that time but I fell in a heap. They briefly discussed Hugo’s condition; most definitely something genetic, they believed it was some form of syndrome. It was clear to the team looking after Hugo that his time was limited and we needed to discuss what forms of resuscitation we were comfortable with. I didn’t know what to expect during this appointment, but it definitely wasn’t the signing of a do not resuscitate plan. I couldn’t fathom that we were all sitting around discussing this beautiful little boy in terms of how long we would extend his life. It went against every single fibre of me as a parent and I wanted to scream and rail against the wrongness of the situation. You do everything to nurture and protect your children, it seemed like a horrible surreal dream to be discussing what we did and did not agree on in terms of saving Hugo’s life. I knew why we were having the discussion; above all else, none of us wanted Hugo to suffer, but it still felt wrong. During the meeting I was awed at how strong Marian and David were, I envied them in that moment. I wanted to be like that, to be able to hold it together despite my internal struggles and calmly discuss Hugo’s treatment and not feel like a raving lunatic, but I couldn’t force myself to hold it together, so I sobbed while Marian held me for as long as it was needed for me to pull myself back together. I wanted to be strong for them and for Hugo because I didn’t want any of them to worry about me, but in the end the grace they both conducted themselves with during Hugo’s days is what propped me up and pulled me through. I went home that evening after visiting Hugo again. I wasn’t sure if I would ever see Hugo again when I left the hospital, but I knew that I needed to be at home and let David and Marian cherish ever moment with Hugo without me constantly hanging around. This was their time and I was more than happy to let them have it.

The next morning I woke around 4am. Usually the first thing I do when I wake is look at my phone, but for some reason that morning I didn’t. I got out of bed and did a few things around the house and some work on the computer. When I got back into bed at 6am I looked at my phone and noticed three missed calls from the nursery at 4am and a text from Marian to let me know that Hugo was unwell and they had been called into hospital because he appeared to be deteriorating. I was actually grateful that I had missed the phone call. I decided to stay home unless Marian and David wanted me to come in. I didn’t feel the need to be there in that time. He ended up stablising, but I knew without even asking Marian that they had decided it was almost time to say goodbye to the gorgeous little man. His body was clearly struggling and I knew they didn’t want to see him continue to struggle, especially as there was no way for him to show us if he was in pain. He couldn’t cry or move, so we had to guess how he was feeling by watching his vital signs.

Friday came and I knew this was the day. Marian and David had decided to withdraw Hugo’s life support. They asked if I would like to go in and have a cuddle with him and although I didn’t know if I felt strong enough, I knew I would regret it if I didn’t. Holding Hugo was amazing, he had the strongest heartbeat and feeling it against me made up for all the times he didn’t move while I was pregnant. I touched his hair, his face and I held his hands to breathe in every part of him and memorise how he felt in my arms, how he smelled and how full of life he was even through his limitations. I held him as long as I could until I was too sore to continue sitting there. Then Simon and I said our goodbyes and went home. I knew I wasn’t strong enough to be there when his ventilation was removed and I said a little thanks to the universe that Marian and David’s strength would see Hugo rest peacefully.

hands

The next few days are a bit of a blur. Telling the girls was extremely difficult though they have been incredible during this time and have talked to us when they’re feeling down. Since then there has been lots of tears and a fair amount of alcohol. I read something someone had written about losing his wife that pretty much sums up how I feel; losing someone you love is sort of like never being able to see the colour blue again. You can go on with your life and even be happy again, but the world looks permanently different and you can never forget what it used to look like. This is exactly how I feel; I seem to travel along with a low level of sadness – the world isn’t as vibrant as it once was. 90% of the time I am perfectly happy and look back on my time with Hugo and the time since and I am at peace with it all, but the other 10% of the time I fall in a heap and don’t want to do anything, talk to anyone or leave the house.

Marian and David stayed for a month after Hugo’s birth and it was nice to live in our little bubble of grief during that time. We had each other to talk to and we supported each other through those first few weeks but when they went home it felt like I’d taken two step back in my progress. I was suddenly alone during my days and I found some social situations awkward. At school one day, one of Addison’s friends mums saw me and I could see what she was thinking written on her face as clear as day…..’oh shit – what do I say to her? Do I talk about the baby or pretend it didn’t happen?’ instead she said an awkward hello and turned to make conversation with someone else. That woman unintentionally made me feel like pariah and made me want to hide away all the more. I get it – people don’t know what to say or how to act around you when you’re going through something like this. I have learned so much from this process and now know what to, and what not to do and say when people are grieving. Platitudes do not help in any way shape or form….don’t people…just don’t! The best condolences I’ve had are the many hugs gifted and the patient people who have let me share Hugo’s story. I absolutely love talking about him on those days when I’m strong. I want to share his story with the world; the story of a little boy who never truly knew the impact he made on the world. The story of a little boy who came into this world through the love and support of a community and was celebrated each day he was alive. The unexpected gifts he has given me as a result of his short life; a greater appreciation for all the amazing people in my life, a new form of strength that I never would have gained any other way, and a deeper level of the meaning of love for him and his amazing parents, not to mention my own husband and family. This is Hugo’s story and his legacy and yes it was filled with sorrow, but it was also filled with wonder and amazement and that’s something I want to share.

I know my experiences since Marian has gone home are very different to her own but I suppose this is where it would naturally split since we left our bubble. Marian had always planned on taking a baby home to Adelaide and at that point I would go about my life again with work and family. This is where my grief is complicated, because I am both directly and indirectly involved and sometimes this leaves me feeling a little lost. I am fully aware that Marian had planned this time as a time to be settling into a life as a new mum, working around a sleep, feed cycle and I know going home made her acutely aware how different her reality turned out, but I will let Marian share her feelings on this when and if she is ever ready. At the moment I am focusing on getting healthy again and spending quality time with my family before going back to work in January and most days at the moment are good days. I still wish that I was at the part where I’m ok with everything that happened – that moment when just enough time has passed and you can go about your day as if the worst hasn’t just occurred, but I’m not there yet…..I’m not there yet, but I’m right where I should be and for now that’s ok.

did-my-best

 

 

 

 

6

For Hugo

The way time moves when something is happening is interesting. It seems to move so quickly and yet stand still at the same time. I find it hard to believe that Marian and David have been in Brisbane now for over a month. In that time so much has happened and it’s certainly been full of an array of emotions.

Hugo David Sandberg was born on 19th September 2016. He lived for four incredible days that were filled with love and joy and a sprinkling of sorrow. While we’re all working on Hugo’s story, his passing is still so raw therefore it will take us all some time to gather our thoughts to share them with you, but I promise we will share his amazing life when we’re ready.

Today we held a memorial for the special little guy. We said some words, planted some flowers, released some balloons with messages written on them for Hugo, ate some cake in true Kundaberg style and then whispered our wish for Hugo to some beautiful butterflies that we then released. I’ll never be able to say goodbye to Hugo, it’s more of a – we’ll meet again.

For Hugo

This story is written for a very special boy. While boys may prefer stories of fantastical beasts or dragons, unfortunately this is more of a love story, sorry Hugo.

Once upon a time there was a man and a woman who loved each other very much and wanted to have a baby to make them a family. Unfortunately the woman had an army inside her body that wasn’t always a friendly army and would sometimes go to war on her body. This army made carrying a baby risky as the army could hurt the growing baby in her tummy. The man and woman decide to look for a very special lady who would help carry a baby for them.

Little did the man and woman know that they would find a crazy little family some two thousand kilometres away. This crazy family consisted of three kooky girlies name Britt, Ciara and Addison and their Mummy and Daddy – Simon and Rachel.  They were typical Queenslanders who liked footy, fishing and camping. When the crazy family met the man and woman, I don’t think they could have ever guessed at what kind of journey they would be in for when the Mummy from the crazy family offered to be their surrogate.

You may have guessed by now that the man and the woman mentioned are your Mummy and Daddy. They loved you even before you were a mass of cells smaller than a seed and they had so many plans for their life together with you. Unfortunately sometimes our plans go sideways and don’t end up the way we imagined but along the way we learn what we can and try to gain understanding from the situations we find ourselves in.

My journey with your Mummy and Daddy started filled with excitement. My family and I had made some spectacular new friends. My friendship with your Mummy felt like no other friendship I had experienced before. We were more like sisters from another Mister than simply friends. My crazy kooky family felt similar about your Mummy and Daddy, from the start we seemed to have formed an easy bond and kinship that seemed so natural and we formed team Kundaberg and set about creating you.

Fast forward a few months that were filled with boring surrogacy preliminaries, cake, wine, plane trips, scary chairs, a little Pip and then more cake and wine; we learned that you had decided to make a temporary home inside my tummy. We called you our little Bear. From the moment you nestled comfortably inside of me I knew how much I loved you, even though you would be going to live with Mummy and Daddy when you were born I still gave you all my love so you could experience it from the moment your little heart started beating. When we saw proof that your little heart did indeed beat inside of me I knew your Mummy was in love by the excited squeal that came from her during our very first ultrasound. We had proof you were on your way and Mummy’s excited squeals continued over the months followed by your Daddy’s happy chuckles as you continued to grow and they prepared for you arrival.

When we learned how truly special you would be and how little time we would have with you, our love for you grew exponentially. We had to fit a lifetime of love into such a short amount of time. In the weeks leading up to your birth Mummy and Daddy came to live close by. We enjoyed many little boops of you when you would float around my tummy, we enjoyed watching your halo of hair float around your head during your ultrasounds and we continuously wondered what you would look like with excitement and tried to guess when you would arrive. We didn’t have to wait very long as you arrived two short weeks later. My only indication that you had been born was your Mummy’s excited squeal that rang out through the operating theatre, I don’t think I’ll ever get tired of that squeal. When I finally saw you and held your hand I looked at your beaming parents and saw only joy and pure love. While you know how the next few days went I don’t think you could truly understand the impact you had not only on my crazy little family, and Mummy, Daddy and Bunty but people from around the world including extended family from Sweden, family in Adelaide and the entire Australian surrogacy community who had followed your journey to us from the beginning.

What you’ve taught me Hugo is that family extends beyond blood. The family that we make in our lives exceed the bonds of any family we were born into. You, Mummy and Daddy are now part of the crazy little family I have created for myself and I’ll cherish you all forever. You have taught me that in times when I don’t feel strong, there are people around me that I can count on to lift me up and keep me going.  You have taught me that sometimes the smallest things take up the most room in my heart. You taught me how lucky I am to have amazing family and friends in my life. You have taught me to be grateful for all the things that bring me joy in life including the time I got to spend with you and I’m forever grateful for all the people that made our time with you so special. For all this I thank you.

My wish for you now is that wherever you are I want you to be happy. I wish that you only get to experience joy and love because you deserve nothing less. I hope you watch over Mummy and Daddy because they will sometimes be sad and I hope that one day we’ll meet again and I can take your hand in mine and we’ll float in space and drift in time.

dsc_0034

Kundaberg Family

Kundaberg Family

A butterfly we released for Hugo

A butterfly we released for Hugo

4

38 weeks and masters of distraction

Today we’re 38 weeks and playing the waiting game. We had a scan this week that showed Bear is a hairy chubba. A whole halo of hair around it’s head and an estimated current birth weight of 4.1kgs (9 pound 3 for those going by old scale). Bets are now on for how big Bear will be at birth. I think it will be my biggest bub yet with my second weighing in around 4.3kgs (albeit at 42 weeks!).

The last few weeks have been very up and down. We didn’t end up getting to live the exciting few weeks that we had planned for this time, but we still have had good times along with the sad. As we sit around waiting for the birth I’m filled with so many different emotions throughout the days. The excitement is still there – Marian and David are gonna be parents! There is also so much trepidation as none of us know what to expect. Operation distraction starts today. We have decided to fill our days leading up to the birth with as many activities of distraction as we can to get us through the days and help distract us from our most troubling thoughts. Today I have given my kids the last day off from school before school holidays so we can go and visit Brisbane’s Cat Cafe! We are going to go and strangle some cats with our love and I may even have to check Marian’s bags before leaving to ensure she doesn’t smuggle any home. I’m sure she has plans to become a crazy cat lady, but who can blame her! I am tempted too, but hubby swears two cats is already two cats too many. Pppffft. What does he know?

6

Feelings

Grateful, for this amazing woman and her family.

Scared, for Bear. Please don’t suffer, little one.

Excited, to become a mum.

Worried, for our families.

Loved, by our army of support.

Scattered, by a thousand “what if”s.

Strong, because my track record of getting through tough times so far is 100%, and that’s pretty good.

24

35 weeks: Crying and other useless acts

Two part post – Thursday 25th August 2016

In the last post I mentioned we were going to be having an amniodrainage. The drainage went well. A whopping 4.1 litres was drained from the swimming pool. Prior to the drainage we had a scan in which Bear didn’t move. I wasn’t concerned, I had felt movement while we were in the waiting room, however the consultant was called into the room and started talking to us about him being concerned that Bear may have congenital myotonic dystrophy in which case it would probably never breathe at birth due to lack of intercostal muscles. This threw us in a spin as he was going off a two minute scan where in all likelihood the baby was probably asleep. He went ahead with the drainage and by the end of the procedure we saw some movements and breathing motions which the consultant was happy with. We nicknamed that consultant Dr Death for putting the fear of God into us and after doing some research I found that congenital myotonic dystrophy is tested for in standard PGD testing and as Bear had PGD testing when it was a tiny embryo we knew that it wasn’t possible for it to have this condition.

After the procedure I did begin contracting but by early evening we were able to stop the labour using nifedipine. During the night I didn’t feel any movements so we had a CTG the next morning which did show Bear was moving. Yay! I’ve never really felt Bear move much. At first I put it down to having an anterior placenta. The placenta is sitting on the front of my uterus so it’s blocking most of the kicks I should have been feeling. Then when I was diagnosed with polyhydramnios this gave me another explanation for the lack of me feeling Bear move. I had always felt movements down low during the evenings but I had never felt any strong kicks. Again, I explained it away due to the placental location and the polyhydramnios. Since we had 4.1ltrs drained however, I figured that I should start feeling Bear move more. Many times during the day I could feel noticeable lumps in my belly where Bear would stick it’s knee out or stretch it’s feet to the top of my uterus, but again – no big movements. I finally put it down to Bear being a quiet baby and thought nothing more of it. We had a follow up scan booked for this Wednesday and I went along by myself this time. Marian and David had come up for the drainage but had gone home to prepare for their long drive up this weekend to stay for the remainder of the pregnancy. The scan seemed to go well but again the sonographer noticed that Bear didn’t move at all during the 20 minute scan. She said to me she had some concerns and she would go and get the consultant to come and have a look and see what he thought. Dr Death wasn’t at work on Tuesday for which I was grateful as I didn’t want another conversation that was all doom and gloom so another consultant I had seen earlier in the pregnancy came in and asked to scan me.

He asked me again about movements and I told him Bear had always been quiet. He asked if anyone had mentioned myotonic dystrophy to us before and I said yes, but Bear had PGD testing which ruled it out. He then inquired whether the PGD testing included Spinal Muscular Atrophy (SMA). I honestly didn’t know. He pointed out a few worrying things he was seeing on the scan that gave him some real concerns. Lack of movement was one, also lack of breathing motions which babies tend to do a lot of at this gestation. Then he showed me how Bear had a thickened layer of subcutaneous fat on it’s legs with next to no differentiation of muscle mass. In short it appears that there is next to no muscle at all on Bear’s legs. He said this paired with the polyhydramnios makes him almost certain that Bear does in fact have a form of muscular dystrophy and in terms of outcomes, it’s very bleak. As Dr Death told us, Bear will likely never breathe on it’s own. He went on to explain that even if it’s not SMA and PGD testing has ruled it out, the signs of some form of muscular dystophy are there and can’t be ignored. Further there are so many forms of muscular dystrophy that they can’t test for them all in PGD testing and it’s likely that Bear has a very rare form that isn’t included in standard testing. He apologised that this hadn’t been picked up already but mentioned that it’s often not diagnosed in pregnancy but because we’ve had repeated scans, the pattern has emerged that shows all is not well with Bear. His next words were like a lance through my chest “I have been wrong before and I hope in this case I am, but if I’m being realistic, the signs are there and I can’t ignore them”.

At that point I really didn’t want to fall apart, but I couldn’t help it. I didn’t want to be that woman you hear sobbing behind a closed curtain that leaves you wondering what bad news has just been delivered but that was me. I wanted to hold out until I was alone or until Simon was with me in private so I could just let go but you find yourself restraining yourself because you’re in a hospital with thousands of people waiting around. In the room next to me I heard a sonographer telling a little girl that she was going to have a baby sister and the excited conversations the parents were having with her and meanwhile I had just been told that Bear probably would not even live a minute, an hour or a day. And at that point the burden was all mine, I was the only one in our team that knew. How was I supposed to tell Marian and David? There was no way I could physically call them but it seems such horrible news to put in a text. The next half an hour was taken up by more appointments being made and waiting for the ultrasound report while quietly shedding a few tears and trying to hold it together. I texted Simon first and he left work to meet me at home. Then I bit the bullet and group texted Marian and David that life as they knew it would be irrecoverably changed from that moment on. Marian’s first reply was that she was sorry that I had to find out on my own. That’s a testament to the type of selfless person Marian is, always concerned about others before herself. I knew no matter what happened we would get through it together.

I managed to make it to the car park before I completely lost it in what I can only explain was utter grief mixed with a panic attack. I felt like I couldn’t get enough air as I sobbed to the unfairness of it all. Up until now, apart from the polyhydramnios we have had the perfect journey. We ticked all the right boxes, we did all the right things and still we have this outcome. Marian and David decided on PGD testing when they found out they would have to do surrogacy because they wanted to make sure only the healthiest embryo was transferred so we were never faced with this type of outcome, and yet despite careful planning here we are. It’s no one’s fault, there are no feelings of guilt on my part and I hope there aren’t any on Marian and David’s part either, it’s just one of those ‘unfortunate things’. One of those unfortunate things that turn your life upside down and leave you feeling like a shell of the person you once were. By the time Simon got home I realised what a wasted effort crying is and wonder why we even do it? It hurts your head, your heart, your eyes and lets face it, the fluid you loose from it could be better used elsewhere in the body. Despite knowing it’s a useless act I can’t seem to stop doing it for any decent length of time despite my best efforts to distract myself. And then there are all the thoughts you just can’t switch off. What the hell do we do now? We know this information but there’s nothing we can do about it. Now instead of preparing for an amazing life event, we’re preparing for the possibility that everything we had hoped and dreamed of will never happen. All the clothes hanging in Bear’s closet will go unused, it’s cot unslept in and worst of all Marian and David won’t have that proud parenting moment of introducing their new bundle of joy to their family and friends. It sounds so juvenile to say, but it’s just not fair. At this point I would like to extend a big fuck you to the universe for putting us in this position.

I know there are various stages to grief but I just want to be at acceptance already. I want to feel like I did this morning when I woke at 3am and in that split second between sleep and consciousness I felt nothing until the events of the day before come flooding back into my mind and left me crying so much I woke up Simon. Whatever happens in the next few months I know we will be well supported and Bear will be showered in more love than anyone has ever felt no matter how short it’s life is. And Marian and David are going to be the best parents ever.

***********************************************************************************************************************************

Saturday 27th August 2016

It’s hard to believe that we have known the news for only a few short days. It feels like time has stood still and years have passed at the same time. I finally got some good solid sleep last night and feel a little stronger for it today. I know some days will be easier than others and some days will seem utterly devastating so I’m just taking each day as it comes. Usually at this part of pregnancy I’m wishing away the days until the birth so I can have my body back. This time I can hear a clock ticking ever so loudly and every second that passes is one second less time we have with Bear. I think it’s cruel that I’ve had Bear to myself all this time and Marian and David will only have a few short precious moments. After doing some research I have found a few personal stories where babies with SMA have lived from anywhere from a few minutes to a few months. No time in the world will ever be enough but as an amazing friend and colleague has said to me, Bear will decide how much time we have with him or her and we will just have to accept that.

Another beautiful surrogate friend of mine has told me that crying is not pointless. Crying is the way your eyes speak, when your mouth cannot explain how broken your heart is. Nothing can sum up how I feel when I cry more than that sentence. I have given up trying to be strong and keep my sadness at bay. I decided it’s ok not to be strong, it’s ok to completely fall apart and scream and swear – though I’ve stopped short of breaking things. Swearing gives me a surprising amount of satisfaction. Fuckity fuck fuck fuck it. Fuck this situation, fuck this shitty feeling and fuck the universe for doing this to Bear.

I have found distractions are also helping. Getting out of the house keeps me busy for a few hours everyday. There are still times I’m out where I break though like yesterday when I went to the shops and I saw everyone around me going about their day without a care in the world and all I could think was tick tock, Bear’s time is running out. I saw a few women with newborn babies and I thought – they have no idea how lucky they are. At that point I nearly turned around and walked back to the car, but I told myself I couldn’t avoid these situations forever, so kept going.

Marian got in touch with Repromed to find out what they actually tested for with the PGD testing done on Bear. PGD testing is touted as a way to make sure only the best genetic embryo is transferred into the uterus by ‘allow(ing) us to look at all chromosomes present in the embryo, meaning we can make a more informed decision about which embryo to transfer’. In reality all it does is make sure the correct number of chromosomes are present and doesn’t actually check those chromosomes for abnormalities like we thought it did. I feel like we’ve been deceived into a false sense of security. Yes PGD testing can check for SMA but only if they know to look for it because there are simply too many genetic abnormalities to check for them all. So I extend another big fuck you to standardised PGD testing.

I have to say a big thank you to everyone who has been in touch over the last few days. You’ve each lent me a little bit of strength to get through the days. You all know who you are. To Simon who has been there in my messiest moments to simply listen to me blubber and dish out the best hugs ever, you’re my rock and I love you more than words. I apologise to anyone whom we haven’t told in person. It simply seems like too much to individually contact those closest to us as I relive the same thoughts and feelings over and over, so we have decided to use this blog as a way to share Bear’s news. Also a thank you to Marian and David’s friends and family who have helped them these last few days with love, flowers and cookies. I feel horrible that Marian and David will be so far away from you all during this difficult time and you may never met Bear, but they reassure me you will all be there through messages and the wonders of technology for which I’m grateful for. Lastly I have to thank Marian and David. When people get this type of news it’s so easy to retreat into yourselves and shut out the outside world. Instead they have included me in all their thoughts and feelings and kept up an incredible amount of communication which has also helped me immensely. We are totally gonna get through this together <3

 

4

Exciting news and Swimming Pool update

I have THE most exciting news!! Next week in my very own city, just 15mins from where I live, the new Thor movie is shooting!! How flippen exciting is that?? Chris Hemsworth is going to be walking around in my hood! This is somewhat serendipitous because Marian and I had planned a Chris-a-thon for our maternity leave. We plan on watching all the Chris movies – that is Chris Hemsworth and Chris Pratt, cause – you know…yum.

Hello! Look at them arms :)

Hello! Look at them arms :)

While the prospect of going to watch the filming is tempting, the thought of trudging my fat self into the city is less tempting. Monday I had another scan to check fluid levels around Bear. I had a feeling either Bear had a giant growth spurt or Mt Franklin was overflowing yet again, the scan confirmed the latter; once again the amniotic fluid levels are ridiculously excessive, even more than before we had the drainage. After the scan the consultant came to see me to discuss another drainage. I really wasn’t keen on doing one anytime soon. Next week Marian and David arrive to stay until after Bear is born, so I figured that if we could hold off til then it would be for the better. This would also put us another week closer to our due date and I was hoping this would mean it would definitely be the last time the pool needed to be drained. While the consultant understood where I was coming from, he believed there was no benefit in waiting any longer due to the risks of preterm rupture of membranes given the excessive amounts of fluid. We decided that I would make an appointment for the following week but he offered me the choice to call anytime during the week to organise a drainage if I changed my mind. He also organised an appointment with a neonatologist the following day to discuss the investigations they would do on Bear at birth to see if there is a reason for the polyhydramnios.

After going home that afternoon completely deflated and a bit teary and discussing it with Marian, David and hubby we decided that it was best not to wait another week. Hubby was the one who convinced me, he had noticed how much I’d been struggling over the last few days to do anything due to being so uncomfortable and heavy. He didn’t see the benefit in waiting another week or so just so Marian and David could be there and bless his heart he offered to come into hospital with me to support me through it all. After talking to Marian and David they decided there was no way they wouldn’t be here for it, so I made an appointment for this Friday for a drainage and tonight they will fly in to be there for me and Bear. More tears ensued. Given the procedure goes well, they will return home after and drive up the next week to stay.

The appointment with the neonatologist was informative. Basically there could be two causes for the polyhydramnios that they won’t be able to investigate until birth. One is that Bear could have a kidney condition that causes excess weeing which would lead to all the extra fluid since amniotic fluid is pretty much just baby wee. The other is esophageal atresia where the top of the esophagus doesn’t connect to the lower part which means Bear can’t swallow. Since we have seen fluid in Bear’s stomach on ultrasound it is unlikely that this is the cause, however we were told that in rare cases esophageal atresia can be present with fluid in the stomach. At birth Bear with have a tube passed down it’s throat to ensure it is connected and urine output will be monitored closely. Bear is also measuring quiet large due to it having an olympic sized swimming pool to move around in, so it’s blood sugar levels will also be monitored for the first 24hours. The neonatologist was quick to point out however that in most cases of polyhydramios there is no underlying cause, so we may never know why I have it. Maybe Bear is going to be an Olympic swimmer!

Due to my admission tomorrow for the drainage, alas I will not be dragging myself into the city next week to see Chris Hemsworth in the flesh. Instead I’ll be resting at home recovering from another giant needle being shoved into my belly 😛

1

Long time no blog! 33 weeks and pregnancy pics

Well hello there. It’s been a while since I’ve blogged. 10 weeks to be exact. Wow how the time goes! After the conference I got busy with work and the growing bump really did drain me. Some days at work the ligament pain I was getting from my rapidly increasing girth would take my breath away. Chronic pain tends to do things to you. You’re tired more, you want to do less, staying in bed or just chilling on the couch sounds like an amazing day and it gets to a point where you just don’t feel like sharing anymore, hence the lack of blogging. It really was no surprise then at 28 weeks when we had a routine scan that polyhydramnios was diagnosed. What is polyhydramnios? It’s a condition where there is too much amniotic fluid surrounding the baby. How is it caused? Usually it’s caused by fetal genetic conditions where the baby either doesn’t swallow or swallows very little, but sometimes as it is in my cause, there is no cause. I’ve had it in other pregnancies, but never to this extreme extent and usually towards the end of the pregnancy. After the diagnosis it was decided by the powers that be that we would have fortnightly scans and if I became symptomatic (started to struggle breathing due to my increased girth – yes I like that word so I will use it often. Girth) then I was to represent and they would make another plan for me. The scan showed that everything else with Bear and myself was peachy. Go Bear!

At 29 weeks we had a really exciting weekend where myself and the whole Kunde family flew to Adelaide to share Bear’s baby shower with Marian and her amazing friends and family. While we were there we did a pregnancy photo shoot which I can happily now share with you!

13938129_10153864596757825_4835410288158633924_o13913731_10153864599192825_654881170989378164_o13958059_10153864601432825_8055705985060091887_o13987525_10153864596692825_5859960550615144041_o13958110_10153864612462825_3515485513200684843_o13913978_10153864612702825_1454891234943025046_o13920080_10153864610677825_7514674541374496970_o13920070_10153864607767825_8591271573559916074_o13938190_10153864597532825_6575898262100944463_o13923592_10153864596697825_5858476931514626842_o13925466_10153864597717825_5564704902705310710_o13882448_10153864599007825_5088131169221699922_n13988017_10153864605997825_1673963955999852564_o13906754_10153864601662825_7042771488693135846_n13939293_10153864597467825_7523629206027256009_n

The Kundaberg Team

The Kundaberg Team

As the saying goes, babies are so cute you could eat them. We usually wait until they're born though Marian

As the saying goes, babies are so cute you could eat them. We usually wait until they’re born though Marian

Can't you feel the love?

Can’t you feel the love?

13987591_10153864606152825_5710811461104968344_o

We also got to see a bit of Adelaide’s beautiful but freezing cold beaches. We took advantage of the cold and took the kids ice skating. See amusing pics attached. While David was a pro having grown up in the land of snow and fairytails, Simon was a little more uncoordinated but he found his feet eventually and managed to ice skate while catching pokemon. Marian and I chilled out by the penguins while the guys and kiddies were skating.

Addy

Addy

Ciara loves iceskating

Ciara loves iceskating

Penguin!

Penguin!

A rare sight indeed. A shy Charmander found outside it's natural environment

A rare sight indeed. A shy Charmander found outside it’s natural environment

The baby shower itself was a beautiful day. A huge shout out to Mumma Marian and Aunty Lyn who planned and baked their hearts out to make the day so special. I got to experience the amount of love and support Marian has been given by her family and friends which was extra special since Marian never thought she would become a Mumma. I even got spoiled by a few of Marian’s friends who did the sneaky and gave me a few small bits and pieces which came in handy over the next few days! And of course Bear was totally spoiled! As it should have been 🙂

When We arrived home Sunday I was totally beat and Simon kept commenting on how much my belly had suddenly grown. I could definitely feel it as I was gradually having more and more trouble breathing. I had the next day off work so I decided to head to the pregnancy assessment unit and get checked out. On top of the breathing problems I wasn’t feeling Bear move very much (possibly because of all the fluid surrounding it) and I was becoming ridiculously uncomfortable. When I got there I had a CTG which showed lots of baby movements, even though I wasn’t feeling them. It was decided that the best course of action was to admit me as a patient, have a scan and investigate the shortness of breath. That afternoon I had a scan which did indeed show a sudden increase in amniotic fluid. One of the specialists came to see me after the scan and said he strongly suggested that I have an amnioreduction and stop working immediately. When I asked him how much fluid they would drain he said they could easily drain 3ltrs and Bear would still have plenty! The risks of an amnioreduction included a 5% chance I could go into preterm labour, so I decided it was best to speak to Marian and David before making a decision. An appointment was made tentatively for the next day to have the drainage. Marian and David agreed that it was best to go ahead with the procedure as our risks of preterm labour and preterm rupture of membranes was far higher if we didn’t have the procedure than if we did. Marian decided that she really wanted to be there for it so two hours later she boarded a plane to Brisbane and arrived later that night. At first I didn’t see the need for Marian to be there but by the end of my stay I was so glad she came. I didn’t think I would need support for the time in hospital or the procedure until she arrived and I realised how much I really needed someone with me, so I really need to take this time to say a huge thank you to Marian for going above and beyond to come to Brisbane at such short notice to hold my hand while a really really big needle was inserted into my belly! And likewise a thank you to David for being on standby to come in case I went into labour. In the end the drainage went well enough with nearly 800mls drained before I started contracting and the procedure was stopped. Despite not draining as much as planned I immediately felt better. I could breathe again and all the ligament pain I was having stopped which was incredible.

Since then I have just been pottering along now coming up to 3 weeks since I went on leave. I’ve read 8 books, cleaned the house numerous times and generally felt guilty that I know it’s ridiculously busy at work and I can’t contribute. We had a scan on the 1st Aug which showed the fluid levels were remaining steady. I do feel like I’ve grown a fair bit in the week since though. We have another scan on Monday, so time will tell if it’s baby or fluid. Watch this space!

Girth

 

13902654_10153864596622825_3570764870186860543_n

 

13

Inducing lactation: week 1 in review

I have officially made it 1 week on the breast pump! I am following the Newman Goldfarb protocol to induce lactation, in hope of being able to breastfeed our little one.

By my calculations that’s 56 pumping sessions, or around 18 hours attached to the pump. I pump every 2-3 hours, including overnight (where I sometimes stretch it out to more than 3 hours because let’s face it, sleep is important).

Here’s the highlights!

Day 1: Time to pump for the first time! Let’s do this. I am feeling motivated – it is very lovely to think that I can do something to help grow our little one once they meet us on the outside. It takes me around 10 minutes just to figure out how to get the flanges in the right position to gain good suction. After a few minutes, beads of breastmilk start to form. Nothing makes its way in to the flange. Nothing happens for most sessions today. I pump every 3 hours and then hand express until I get sick of it. I remain motivated until the alarm goes off for my 3am pump, when I feel tired, grumpy, and severely question my choice to induce. Where did all that motivation go? I decide that I’ll give myself 48h to decide if I really want to do this, so finish my session, set my alarm for 3h later, and go back to sleep.

pump - 1

The pump suction is a purring-like noise. The cat is in love.

3am pumps without a supply feel like you’re all nice and relaxed and then wake up to a nipple cripple. You do gain tolerance though 🙂

Day 2: I am awake! Plenty of energy – maybe I can do this whole broken sleep thing after all? Motivation is back! Today some breastmilk makes it all the way in to the bottle!! I heard this takes weeks for some women, so I feel very fortunate. I’m not so attached to it, so I wash it down the sink (it’s not much anyway). Today I am high spirited (in part due to the outcome) and try to remember how this feels so I can tell my 3am self that I can do this.

Day 3: I am exhausted. I decide to stay up until midnight, and sleep through my 3am pump session today in hope of getting a little more continuous sleep. It feels like I’ve made less milk today. I investigate the use of herbs (fenugreek and blessed thistle) to increase my supply. I find that fenugreek is reportedly a blood thinner, so need to seek medical advice before adding this to my regime. I email my specialist and talk to my pharmacist. There is an unknown risk, therefore I decide to sleep on it for a few days.

Day 4: Skipping a session last night worked! I have way more energy today. I need to remember to not sacrifice my health too much for this experiment, as it could make my Lupus flare. Gotta be realistic 🙂

Day 5: I think I’ll start measuring what I’m expressing, just to keep me motivated. It varies from session to session – anywhere from nothing to 0.3ml to 1.5ml! I start syringing and then freezing my output. I know it’s not much at all, but there’s something satisfying about having something tangible to look at for all the hard work, rather than just expressing it in to a towel.

pump - 3

Liquid gold!

I also go to visit a breastfeeding friend and am totes jealous of her tap-like boobies! Squad goals.

Day 6: My mind is still not decided as to whether this will be a sustainable activity. I decide that tomorrow will be the day I start herbs. I am satisfied with taking the risk to my health, and decide that if my supply does not increase then it may not be worth the additional physical exhaustion (which in my case can lead to a Lupus flare if severe enough). I remind myself that I can breastfeed even without a supply (using a feed line).

I feel positive and high-spirited about my ability to continue this experiment for the next while 🙂

Here’s my frozen stash so far – it might not be much (each is in a 1ml syringe), but it feels as though I have accomplished something 🙂

IMG_9533

4

Swimming pool update, team celebrations and breast pumping

This is a post that has been sitting in draft form for a few weeks now – I meant to post it last week until things got crazy!! So please pretend that you are reading it in the past 😀 Oooooh – magic! *ominous music*

You’re probably dying for an update on how things went with the draining of the swimming pool! Long story short- bear is still swimming away happily and Rachel can breathe a little easier after the reduction – and she did not go in to labour! phew! <3 I was so so so glad to be up in Brisbane with Rach. We both needed each other. Only 25 sleeps until we’re in Brisbane for an extended stay. I cannnnn notttttt wait!

We read that there’s a chance that amnioreduction can lead to preterm labour, so I decided to start my breast pumping regime a few weeks early. Usually you start 6 weeks beforehand, but you can start anywhere up to 10 weeks. So this morning I started breast pumping. I’ve been following the Newman Goldfarb protocol since our positive pregnancy test, and now it’s “go time” to properly induce lactation. This means using a hospital grade double electric breast pump every 3 hours (including overnight!) for the rest of my breastfeeding journey (until of course bubs comes along, by which stage hopefully my supply will be large enough to meet their needs, and then I will only pump when necessary to fill in gaps as they arise). So far it’s pretty fun, but oh my god it’s such a weird sensation! Kinda uncomfortable but not painful.

And now for the part that happened a few weeks ago! We had an amazing weekend, with all of the team together! It’s the first time that the whole team has been together in Adelaide, and I’ve got to say that I cherished every minute of it. It felt like a family holiday mixed in with Christmas and New Year’s all at once. It was like having friends over who you hadn’t seen in years, rolled together with friends you have over every weekend and feel you’ve known forever. We’ve had Rach down by herself a handful of times now, but to be able to have everyone living under the same roof at home here for the weekend just felt so perfect.

Rachel has 3 girls, 1 husband, 2 cats, 1 wifey *points at self*. I remember when I first started familiarising myself with surrogacy, and I quickly learned that I wasn’t just looking for a surrogate – I was looking for a surrogate and her family. I love Rachel’s family beyond measure. Not only are they amazing support to her, but they are so supportive of David and I, we really can’t begin to describe just how lovely it was to welcome them all to our home. I love each of her girls for different reasons – they are such beautiful little ladies inside and out, and are pure joy to be around, which isn’t all that surprising considering who they call mum and dad. We also had the opportunity to get to know Rach’s husband more on this trip, which was utterly delightful (and it helps that he’s just as obsessed with Pokemon GO at the moment as I am). I only wish that his Pokemon habits would rub off on David – wishful thinking! Rach’s hubby is the glue that holds our surrogacy operation together, he’s fiercely supportive of Rachel, which in turn is a huge reason why we’ve been able to do what we’re doing. Quite simply, his support of his wife is one of the reasons why I’m going to be a mum, which is pretty huge when you think about it.

The day after they arrived, we had a photographer come over to take some photos of us all to keep as a memory of our surrogacy adventure together. The photographer was under strict instruction to not take any creepy pregnancy photos. At one stage he said “do you guys want to put your hands on Rachel’s belly?” And we were like NO TOO CREEPY, and then proceeded to take an even creepier pic with Rachel in between our husbands. The caption for that one has definitely gotta be “aw yeah, we’ve both knocked her up”. Not awkward at all.

Here’s a few preview shots of our session!

download

download (1)

From the few photo previews we’ve seen, I think they’re going to turn out to be amazing. I’ve been really keen on a surrogacy shoot from the get-go, not only to have record of this moment in time for ourselves, but to have record of this time that has brought our families together. I am feeling very impatient and want the photos back as soon as possible, but our photographer is under the pump at the moment. As soon as we get them back we’ll share them with you all!

The day after our photoshoot, we were blessed to be surrounded by a small group of friends and family for a celebratory morning tea. I may have teared up a little… ok, a lot! My aunty did way too much baking (leftovers for days!!), and mum made her famous sausage rolls. We took the girlies ice skating that afternoon, ate way too much, and wandered around Glenelg foreshore catching Pokemon.

The highlight of the day for me happened when we were sitting at dinner, and Rachel motioned for me to come over and cop a feel of her belly. It was then that I felt the tiniest little muffled “thud” against my palm. Bear was saying hello!!! I squealed with delight, and looked up to see Rach’s husband smiling at me – it’s the most I’d seen him smile all weekend, which really brought home how supportive he has been to all of us.

A full on weekend, full of love, light and laughter!

5

Draining the swimming pool

I’m writing to you from somewhere between Adelaide and Brisbane, on my way to spend the night with Rachel in hospital. Don’t panic – everything is likely ok, I’m just making sure to be around for a procedure that Rachel will undergo to reduce the amount of amniotic fluid in her olympic sized swimming pool. With any luck by this time tomorrow Rach will be more comfortable and have some of her interior real estate back to herself!

The procedure is not without risk though – there’s a small chance that she may go in to preterm labour. It’s small, but it’s still a definite risk – I want to be there regardless of whether things go to plan or not. If we were to not do the procedure, the risks would be greater.

Rachel checked in to the pregnancy assessment unit this morning, and it was around 4 in the afternoon Adelaide time when we got all the tests back, and ultimately decided as a team to accept the doctor’s recommendation of Rach undergoing the procedure to remove fluid. There was no question that I wanted to be there with her, so I threw together a bag of whatever clothes were at the top of the pile (crossing my fingers for undies being in there, haha!) and jumped on the last flight of the day.

Mum was luckily at my place at the time, so she could drive me to the airport right away. Hubby didn’t have enough time to make it to the airport, so he’ll be packing his bags and taking them to work tomorrow morning, to be on call to fly up too. Tonight I’ll spend the night with Rachel <3

So here I am for the next few hours inside this little metal tube in the sky, just me and my blog. Thanks for keeping me occupied, blog! I feel better knowing that I’m on my way to Rachel – I would have felt sick and sleepless had I stayed in Adelaide. The dear love was worried about us having to change plans this week, but there was never any question of her being our priority. Even if things go entirely to plan with the procedure, I know that coming is 100% the right thing to do. We are a team, through and through, regardless of geographical distance. I ain’t having no doctor stick a needle in to my wifey without me in reach.

Anyway, I’ve got a few hours to kill, so how about a poem to explain the situation?

My wifey has a swimming pool,

as deep as deep can be,

full of amniotic stuff,

I hear it’s baby pee.

My wifey has a swimming pool,

she’s a clever surro-mummy,

but when the doctor said “too much!”

they drained it from her tummy.

My wifey has a swimming pool,

So I gave her one big cuddle,

in to her guts a needle went,

and out then came a puddle.

My wifey had a swimming pool,

I love her more than words can say,

And even when that pool is gone,

I’ll love her forever and a day.

Morning update: Rach is all settled in and had a hospital slumber party last night, complete with matching bear slippers <3

13835459_10153991497899915_2137231564_o