This is a delayed blog post written in November 2017
So it feels a bit weird to be blogging retrospectively, this time 2 years ago I’d be typing away at every chance. Honestly, my priorities have shifted. I no longer have a hugely outward facing online persona, and I love it. This is the result of no longer reaching outward for acceptance. I find it within myself, which was the only place it existed in the first place; it just took me a while to get there.
Hopefully that provides a bit of context for the lack of information proceeding this little bit of info: Rachel is pregnant 🙂 🙂 🙂 🙂 🙂 🙂 🙂
At time of writing, we are 5 weeks and 5 days. Our little blob’s tummy name is Thumper (we’ve got a bit of a forest animal theme thing going on, and after “Bear” (Hugo) we decided that this little one is going to be an avid mover – a “Thumper” like the bunny rabbit in Bambi).
I knew that our first transfer would work, and so was very calm, so much so that the two week wait was basically a non-event. Quite the pleasant change from the angst-filled ball I was a few months ago.
Rachel is doing so well, though the tired and hungover-ness-without-the-fun of pregnancy is definitely there – poor love. I don’t know why, but it seems to grip me less around the throat hearing about it this time around. Maybe it’s because all in all, things are going smoothly again, and there’s no need to panic. I care without it viscerally affecting me to the point of being ill myself, which I guess is a healthy thing. I am just wishing the smoothest pregnancy in the world for this courageous woman and her little passenger.
Despite my confidence, one can’t help but occasionally wonder “what if things go awry like last time?”. We have been given the option to test for Hugo’s condition, but our decision as a team is yet to be made. While it has a 1% chance of recurrence, the test also carries a 1% chance of miscarriage. 1% might not sound like much; but once lightning has struck once, you can’t help but feel guarded.
I honestly think the decision could go either way. At time of writing, I think I’m leaning towards wanting the test, for a few reasons. If either worst case scenario were to be true, I think we could all deal with a miscarriage better than a super-high-risk pregnancy and having to switch off the life support of another child. Avoiding suffering for both Rachel and the child would be the most important thing for me – and seeing Hugo go through so much just to meet us deeply affected me. Though I would have given everything I have just to meet him, part of me will always wonder if he was in pain. He couldn’t even cry to let us know.
But then, what if the decision to test kills a perfectly healthy child?
At the end of the day my opinion is very guided by the rest of the team – with Rachel’s at the forefront; as her bodily autonomy in this scenario is of absolute utmost importance. It’s a decision that affects us all; which is why it’s so important that we take everyone’s opinions in to account. It’s why having a strong surrogacy team isn’t just a “nice to have”, it’s absolutely necessary, and thankfully, strength and love for one another is something we have in spades.
So we will continue to search our hearts for the right direction to head over the coming weeks, and come to a decision by the time of our viability scan, which is coming up. I am so excited to see a little wriggly jelly bean in my Rach’s tummy, and am equally excited to see our Queensland family once more 🙂
This is a delayed blog post from October 2017.
If you’re thinking of spawning, when is the right time to have kids? It’s a question that I think is answered by both the head and the heart. We have a team of heads and hearts working on the answer to that question for us, which adds to the complexity of said answer, compounded by the grief associated with prior loss.
After we had Hugo, we were told to wait at least a year before attempting pregnancy. That’s the medical wait time – the mental and emotional wait time were yet to be determined.
My gut was sometimes saying yes, and sometimes saying no. It got to a point where my husband was saying an excited yes, and my gorgeous Rachel was saying yes, but only when I’m ready. This sudden realisation that we as a team had moved on from what seemed to be a vacuum of introspection with no conscious timelines had some very real mental and physical health consequences for me.
All of a sudden my level of healing had consequences that affected others. The crux of it is: I went from the narrative of “I am enough just as I am, however I feel” to “I am not enough” in a matter of minutes – all self-inflicted of course. My team were so supportive.
Queue a few months where I felt as though my mental health was delaying things, the culmination of which was a diagnosis of depression after a week and a half of being unable to physically move, swiftly treated by a SWAT team of caring medical professionals. My god that was hard. It’s the first time I think I’ve ever really experienced depression, a hollow state devoid of any feeling – I lost the ability to animate my face when speaking. I was blunted. This happened about a fortnight before Hugo’s first birthday, which is hardly a coincidence.
At the same time, I had a routine appointment with my rheumatologist who treats my Lupus. I was so sure that the debilitating fatigue was the consequence of my disease – it was just so physical. So, I was excited to get treated and free from it.
She said that my Lupus is the best it’s ever been, and suggested that my symptoms may be the result of depression. I was shocked that a rheumatologist would suggest a mental health diagnosis, but so thankful she did. I jokingly said “ah damn, if it was Lupus I could have just taken a pill!”, to which she questioned my distinction between mental and physical health medication. Bloody hell. This lady is worth her weight in gold – so caring, and the epitome of a good healthcare professional.
So off I trotted to my equally amazing GP for a firm diagnosis and treatment plan. I am pleased to report that the depressive symptoms evaporated over the next fortnight with the help of counselling, medication and some amazing friends and family. I wouldn’t say that things have returned to “normal”, but treatment is necessary right now, and I just have to keep listening to loved ones who never cease to remind me that even when at my most vulnerable, I am enough.
If you are looking for a good book on the topic of vulnerability and “enough-ness”, I highly recommend “The Gifts of Imperfection” by Brene Brown <3
It has been 6 months since our beautiful baby boy Hugo fought so strongly to meet us, lovingly brought in to the world by his surrogate, Aunty Rach. Since then, our family has been put in the capable hands of the genetics team in order to help us to find out more about Hugo. This blog post will provide an update on those findings as we understand it. Please understand that I am just a mortal human, not a medical professional, and if you have come across this blog as the result of your own investigations, I strongly suggest discussing your circumstances with a geneticist. Please forgive me if I use an incorrect term here or there – this information is all very fresh and we are yet to receive it all in writing.
Anyway, back to Hugo 🙂
Hugo had (ugh, I hate writing had! He will always be here in my heart, so I’m going to write “has” :))
Hugo has a condition called Nemaline Myopathy. If you google that, it’ll come up with all sorts of information about a whole lot of stuff that does and doesn’t relate to Hugo. Hugo had the most severe, earliest-onset form. Some people with Nemaline Myopathy go on to lead pretty normal lives. Some don’t. Some don’t live at all. Hugo lived for 4 days.
Humans have around 20,000 genes. Hugo’s condition is caused by a mutation in one of these genes. The name of the gene is the ACTA1 gene. The geneticist explained this as being like a spelling error in the body’s instructions. Each gene has a long sequence of DNA. One of the “letters” in this sequence had a spelling mistake.
This happened when Hugo was a single cell – either a sperm or an egg (this part is unknown).
When a sperm and egg are created, they are formed by way of duplication. When things get duplicated in those very first moments of life, it’s kind of like asking someone to copy an encyclopedia word for word. These words contain instructions on how to “build” a human. Sadly, this process isn’t perfect. Sometimes there are “spelling mistakes”, which sometimes is a problem, sometimes it isn’t. Hugo’s instructions (within the ACTA1 gene, in position 440), had a single spelling mistake. This is the first time that a spelling mistake in this particular position has been documented in medical literature. However, Nemaline Myopathy is by no means unique to Hugo – it encompasses a broad range of similar conditions.
Hugo’s instructions should have said “please produce <an amino acid> to make Hugo’s muscles healthy and strong”, but instead, the instructions said to produce a different amino acid, resulting in his condition.
In Hugo’s case, it is (in all likelihood) a spontaneous error that occurred.
It was not inherited from his mum or his dad. We will not develop the condition later in life.
It has nothing to do with the tummy he was grown in, or his mode of conception (IVF).
It has a stupidly low chance of occurring. Think of it like lightning striking. Please address all complaints to the universe with a stamped, self-addressed envelope. I suggest including many swear words, as well as copious amounts of glitter, so when the universe opens your complaint, they are left with a butt-tonne of glitter to vacuum up. F U universe. F. U.
Yes, lightning can strike the same family twice. In 1% of cases like ours, this happens. This is due to a theoretical chance that there is a form of mosaicism in either Hugo’s dad’s testes, or my ovaries – meaning that even though our own DNA tests do not display the mutation, that *somewhere* in our reproductive organs, this error occurs. In *theory*, there’s a 1% chance of this happening. To someone who has gone through the trauma of losing a child, 99% is not high enough to abate the worry.
People with Hugo’s condition are generally mentally well. They can usually see, hear, and feel touch. We feel comforted to know that in all likelihood, Hugo would have heard us, seen us, and felt our touch. He has forever touched our hearts. Fitting perhaps, that the name Hugo means “of strong mind and spirit”.
As to “where to from here”, well, that’s another blog post entirely; but all I can say is, this always has been, and always will be Hugo’s year <3 Our team stands strong as a family, and feels hopeful to have the chance to attempt to add a new member to the fold in the future <3
Long time no blog. What have we been up to? Well….life, really. The last six months have gone super fast – yes it’s been six months since Hugo was born. Happy six months beautiful boy ❤ Since then I have gone back to work, the kids have gone back to school and we have moved house! We drove down to Canberra for a week, I’ve also gone on a quick trip to Cairns to visit one of my besties whom had a baby and I’ve lost 15kgs! I think Christmas was in there somewhere too.
I was super keen to get back to work. Work gives me a sense of purpose and calm as it’s something I’m passionate about. I feel this profession is a part of my whole psyche, therefore I felt returning to work would bring me some ease and for the most part it did. I am happy I now have my routine back and I am working with my colleagues and the public again – what I didn’t expect was the way I interact with people to change. I have always considered myself a highly compassionate person. Hello!!! Multiple surrogate offender here, you can’t get more compassionate than that! I have always been quick to empathise with people who have experienced hardship and usually build an easy rapport with all the women I met through work. But I now find my level for compassion has drastically dropped. This is something that has unnerved me somewhat because I often felt compassion was one of my strengths.
After going through this harrowing life event of loving and losing Hugo, I have survived the largest grief event of my life thus far. Listening to people complain about their annoying partners, financial stressors or how bad I am at making toast really ticks me off when it previously would have been a minor blip on my radar. As Professor Farnsworth famously said in season 8, episode 9 “I’ve come down with a searing case of WHO GIVES A CRAP?” I guess the small mercy here is that I have identified that this is happening right now and I can consciously aim to change it. Every now and then at work now I will have a couple I instantly connect with and I can feel my old self start to immerge and then I feel great. Other days I still struggle and I feel like I’m letting families down because the old me could have possibly given them a better experience. I don’t want to become a bitter person, therefore my aim for this year is to be more conscious of those around me and get back to the more carefree person I once was.
Now don’t get me wrong….I’m not going to do this to the detriment of my own health. I feel if I did this every day I would be walking the fine line that leads into complete burnout. The same thread of thinking that has gotten me to the point of knowing I need to work on my compassion has also made me aware that I need to dedicate more time and brain space to myself and my own family. It is because of this that I have handed over the reins of the surrogacy communities I volunteered for over the last 8 years. It was no small feat to get to this decision. I have been driven to help the community as much as possible over the years by providing my time, empathy and knowledge surrounding surrogacy to anyone that needed it. The community was also the core of our support network when we found out Hugo would not be long for this world, therefore I ummed and ahhhhed for quite some time before making the decision to take a step back. This step back could be temporary or it could be permanent; I’m going to just see what comes, but for now this feels like the right thing to do and I feel a weight has been lifted from my shoulders.
Life has been pretty good to us so far this year. My family is once again a happy little unit and we are loving our new house. Best of all is that Marian and David are coming to visit this weekend! It has been far too long! We’re going to eat some yummy food, drink some yummy wine and eat some super yummy cake, because that’s what we do. Oh and couch time…..we always have couch time…usually snuggled closely…..or spooning…..while watching Chris Hemsworth. Most of that is true 😝
Now for some gratuitous photos
Awesome book sent to me from a beautiful Surro Sister
If anyone has any spare compassion lying around, please send
This is a VERY long post, and it’s pretty heavy stuff, even though the overarching message is a celebration of life. It has been a long time in the making – first drafted just days after Hugo’s passing to ensure no details were lost in time, and completed several months later. I will talk about Hugo’s birth, life and death and the process that follows. If this seems confrontational to you, you may wish to skip this post 🙂
The weeks before Hugo’s birth
A few weeks before Hugo’s birth, hubby and I drove to Queensland in order to help out however we could, and be a part of the preparations leading up to Hugo’s birth. The drive to Brisbane took 3 days. It was an emotional trip, where we had time to talk about everything that new parents shouldn’t have to think about – the end of life expectations that we had for our child, and how we’d navigate it all. We also saw some free range cows, which was pretty damn awesome:
Rach and I had many plans for how we were going to spend our babymoon together, but most days we ended up just hanging out, watching movies, and falling asleep on the couch together.
Rachel was growing increasingly uncomfortable due to polyhydramnios (a condition where an excess of amniotic fluid had built up due to Hugo’s inability to swallow), but hardly ever complained and generally just got on with life. She was, and continues to be, utterly amazing.
Meanwhile, with a growing list of doctors and specialists, the hospital was very busy. So busy, that we were told that David might not get to go in to theatre to see Hugo be born, which was upsetting, especially since we were unsure if he would live. Prior to this, we were always told that we could both be in the theatre. As Rachel’s discomfort grew, we waited on a time for c-section after being told that we would have to go on to the emergency c-section list, each day hoping today would be the day, as the thought of Rach’s severe discomfort was upsetting to us all. Again, Rachel took it all in her stride, despite the pain.
It felt like waiting for the best and worst day of my life. Rach contacted the patient representative at the hospital, who then sorted absolutely everything – not only an elective timeslot; but also the provision for hubby, surro-hubby AND our birth photographer to be in the room. We had so many amazing hospital staff fighting for us. In the end our time had to be rescheduled due to a lack of availability in the NICU, but then finally, after all that, the day arrived.
MONDAY – Hugo’s arrival
The day of Rach’s c-section. We arrived at the hospital at 9am, where we sat with Rachel and Simon, before getting changed in to scrubs.
Rach and I had both brought in a stash of milk for bear. They put mine in storage, and Rachel’s on the ward, but not before we took some silly photos, where I wielded the syringes like wolverine claws. I am so proud to have worked on my supply enough to provide 10ml a day for my son. I’d do it again in a heartbeat!
Don’t let this smiley facade fool you – inside I’m quietly shitting myself.
We eventually all walked to theatre together and waited anxiously.
Hubby and I sat in a waiting room with our photographer while they prepped Rachel for surgery. Our photographer Emma was worth her weight in gold with comedic material to ease our nerves.
We all got to go in! The first thing that struck me was just how many people were in the room! I got in the anesthetist’s way and had to stand back – oops! I was just so happy to see Rach that I wanted to come up and give her a big hug! Hubby was behind me, and our photographer was next to us.
Rachel didn’t feel so good when they started. She said her shoulders hurt, so her hubby rubbed them. I watched Rach like a hawk, just hoping she was ok. Our photographer told me not to make her laugh or it would hurt. I instead cracked a joke to the photographer, and then squeezed hubby’s hand so tight that it made him a bit dizzy so he asked me to stop.
I was a bit miffed at being asked to stop, so instead grabbed on to anything else I could find – apparently I was grabbing on to his scrubs so much that they almost fell off. I was so excited and nervous!
Then we heard the fluid suction. Emma said “holy shit can you see how much they’ve sucked out?” it was A LOT. They lowered the curtain and I squealed a lot.
Rachel asked us what we had, and I said “it’s a boy!!”.
Bear was then taken to the resus room – a little room off to the side. Since Bear was not expected to breathe by himself, we knew that this would happen. Many hospitals do not allow parents to view their children in the resus room, as the procedures performed can be invasive and traumatic. After making sure Rachel was ok, we were asked to wait in the waiting room.
We sat there for 9 minutes, after which our photographer said “it’s good that they haven’t said anything yet”.
We waited for 15-20 minutes and then they came to get us and we walked down the corridor with our baby being wheeled in a crib, hooked up to all sorts of machines. The head doctor told us “you have a very sick little boy” as we walked up to the neonatal intensive care unit. All I could think about was “I have a boy!” – “I’m a mum!”. As we got in to the lift his head bobbled up and down, and his mummy was worried. I told the nurse in the lift “thank you for breathing for our son”. She smiled at me, seemingly surprised at my thanks.
I may only have 5 minutes as this boy’s mother, so every minute of his life, I want to be thankful.
We arrived in to the NICU (Neonatal Intensive Care Unit) room and were asked to sit down. The lovely midwife explained everything that was happening. There were so many doctors around our little boy, as they were putting in an umbilical tube. They placed a surgical drape over him. They struggled to find the right artery/vein and took some blood samples to try and figure out which was which. Once they did, everything slowed down. He became stable (we didn’t really know what was stable and what wasn’t because we didn’t know what was going on, but the midwife was so calm that we finally felt at ease).
He had a lipid and heparinised saline infusion. I was so thankful that they were able to give and take fluids through his umbilical cord – I did not want my little boy to feel pain through excess needles in his short life.
She showed us how to scrub and sanitise our hands and showed us how we should touch him (a firm-ish hold rather than light strokes).
After they were done we were able to come and place our hand on him. We spoke to him, and I told him I was his mum and he opened his eyes. I was so surprised, I must have sounded like a lunatic with my high-pitched squeals of surprise. Daddy spoke to him too. He had lots of vernix in his ears, between his toes, up his nose, under his knees and in his hands.
I texted Simon to see how Rachel was. He told me that she had just gone in to recovery and he’d give her her phone back when he could. When Rach got her phone back she texted me “I didn’t get a name!” in her text, and I replied that she’ll be the first to hear it. She had a bit of a bleed, so had to stay in recovery a little longer than expected. We stayed by his side and then they wheeled Rachel in on her bed.
Rachel and Simon came in. As they wheeled Rachel up she asked me “what’s his name?” and I said “this is Hugo”. She said “awww Hugo!!” and smiled.
She reached out her hand and held his. She rubbed his little fingers between hers – the first person to hold his hand. I noticed that he wiggled his toe for her. I explained that Hugo’s middle name was “David” for two reasons – one because it’s Hugo’s dad’s name, but also because it’s his surrogate dad’s middle name and we really wanted to honour the Kundes in his name somehow, so thought that was perfect.
Rach was there for a while before being wheeled up to room 915. Our room was 916, right next door. Even though we would not have a baby in our room that night as first expected, we wanted to make sure that Rachel and Hugo did not feel alone on their first night.
That afternoon is a bit of a blur. We spent the afternoon with Hugo. A gorgeous soul (name removed for privacy reasons) was looking after him, a small Indian lady with a very kind heart, who truly cared for him, and another lovely lady (name removed) was on night shift, an upbeat motherly figure with a genuine smile and a good sense of humour.
It was the first of several shifts they would have him for. Hugo’s care mostly consisted of monitoring his respiratory rate, heart rate/pulse and oxygen levels, and adjusting his support accordingly, and occasionally blood pressure and daily blood gasses.
Hugo’s respiratory machine responded to his own breathing attempts and topped him up, which is a huge improvement over the old ventilation systems, which just pumped out a set pressure and amount of oxygen, which could easily damage the lungs if supplied over-capacity.
On his first day he stabilised to just breathe air and no oxygen, and we were very proud. We couldn’t believe it, but it seemed like he was doing a tiny bit of the breathing himself (in conjunction with the machine). He had gone through so much to meet us. I was so thankful to the little man for having fought so hard.
We started experimenting to see if we could get him to move. We tickled his feet and hands. He wiggled his toes ever so slightly, barely a fraction of a millimetre, but to us it felt like he was moving mountains. He even “squeezed” our finger; though by squeeze, I mean more like, a movement of a fraction of a millimetre. To me it was everything.
We stroked his head and played with his hair. On the first day it was a bit sticky from his time in the swimming pool. It gradually became more fluffy over time. I sometimes forgot to wash my hands before touching him, but then swiftly reminded David that he’d been inside Rachel, so no big deal if she forgot to sanitise once or twice!
Emma (our photographer) went home and said to me very sternly “you need to call me if there is any sign of you having a cuddle, like even if it’s a remote possibility, I need to be here before they start moving him and I’ll wait with you all day if I have to”. I hadn’t even thought about a cuddle as a possibility, so this planted the seed of thought in my mind. He seemed too fragile that it hadn’t even crossed my mind. I probably would not have dared ask unless that seed of thought was planted – another of the many reasons that our photographer was worth her weight in gold.
I texted my mum to say she thought it would be a good idea to come and visit tomorrow. She booked a flight right away for the next day.
After Simon went home, we got changed out of scrubs and went up to Rachel’s room to have dinner (sandwiches because we didn’t order any food). Then we went back down to the nursery to see Hugo until it was time to go to sleep. David read him goldilocks and the three bears, we kissed him goodnight, he fell asleep during David’s story and we left to go upstairs to sleep.
We didn’t get a lot of sleep – it was pretty broken. David slept on the bench and I slept on the bed. We probably woke up around 6:30am.
TUESDAY – Hugo’s second birthday
On the second day David had leftover dinner bits for breakfast (yogurt and crackers). Delicious! I expressed some milk and brought it up for the midwife to store.
Hugo was able to have some breastmilk today – how exciting! Previously he was only allowed to have his lipid infusion. The kind midwife was looking after him again. I asked her if she could please use my milk for his first feed. She said she would have to call Rachel and ask. Rachel thought that was stupid that they had to ask her! I wasn’t phased – being an Intended Parent has taught me to be quite good at letting go of control of things that don’t matter.
I held his feeding tube and it went down pretty fast. I said to the midwife that it was a shame that he couldn’t taste it, because it went straight down a tube in to his tummy. She said that she could put some on to a cotton bud to give to him if we wanted. I slowly rubbed it on his tongue and lips.
He had 3ml every 3 hours that day. They would later increase the amount and reduce the frequency if he tolerated it, which he did. They rotated between using Rachel’s milk and my milk. Rachel’s was much thicker and yellower, and took a bit longer to go down. My frozen milk was frothy. In the end he was up to 18ml and had exhausted our supply, so got go have some Aptimil formula from the cutest little premade bottles.
He had some anti fungal paste put in to his tube and also in his mouth. I was able to put it in his mouth, and he went “om nom nom” and moved his little tongue in and out. He also moved his tongue and jaw quite a lot when the midwives suctioned his secretions out, which happened every 1-2 hours, sometimes more depending on how he was going, or if he was about to be moved.
Rachel had planned to come down in the morning, but had a bit of a bleed, so waited until the early afternoon. I was so pleased that she got to have a shower that morning – I put an unnatural amount of thought in to willing the Gods of the universe to please let her have a shower. I didn’t want to leave Hugo, but left the nursery and went down to see her, and she had wet hair and the nurse was just about to come in to see her. I was glad that she wasn’t overdoing it. I needed her to know how much I love her, and could think of no better way to show it than leaving Hugo to come and see her.
Surro-sister Britt and Surro-nan had a visit. Britt was very smiley and held his little hand. Nan told me how proud she was of Rachel and what an amazing daughter she has.
We had nachos for lunch. My mum arrived that afternoon. She went to the florist before coming to the hospital.
David had his first coffee from Hudson’s after lunch. He’d been without coffee for the duration of Rachel’s pregnancy to show his support for her sacrifices.
Emma came to get Rachel and wheeled her down. It was so lovely to see Hugo and Rachel reunited again – they just oozed warmth for one another.
I went to go get my mum from level 5 reception. I showed her how to scrub her hands, and she came and said hi to her first grandchild. I said “this is Bunty (mum really wanted herself to be called Bunty – it’s a bit of a family joke), she’s your grandma”.
I told mum that he only opens his eyes for people he likes, and she said “the pressure is on”. He opened his eyes, and mum was pleased. She sat down and said she wanted to sing to him. She sung twinkle twinkle little star, and he drifted off to sleep.
We then had the task of readying the little guy for his first hold. We felt a little anxious because no one had ever held him before. I put a gown on so that we could cuddle skin to skin. 3 or 4 nurses helped to move him, initially in to my arms, but then the midwife asked if I wanted to have him on my chest. The nurses all fussed about making sure that he was ok.
Emma, Rachel, David and mum were all there watching, but honestly the room could have been filled with a thousand people and he still would have felt like the only person in my world.
As I felt him sink in to my skin, I was so happy and relaxed it was as though I was melting in to the chair.
Once all the commotion had died down and the nurses were happy and went back to their routines, I mouthed to Rachel “thank you”, and she batted me away with her hand as if to say it was nothing.
I sat there for 3 hours, where time stood still.
They were without a doubt the happiest 3 hours of my life. The midwife told me he was very happy, as his stats were the best they had been. I felt invincible. I felt like a mum.
It was up to me to say when I wanted to put him back. I was so so happy being there, but my body was becoming increasingly uncomfortable, so I thought that Hugo must be feeling the same, being unable to move or cry to let me know, so I wanted him back in his cot so that we could make sure that he wasn’t getting any pressure sores. The nurses came and lifted him from me back in to the cot. In order to do so, they disconnected the respiratory machine for a second or two.
When they put him back in to the cot, his heart rate dropped to 90 (usually 160) and he went a deathly yellow colour. The pressure in his lungs had decreased too much by disconnecting the machine. The midwife spoke to him and told him to start behaving, rubbed his feet and suctioned the secretions from his stomach, and increased his oxygen. I could tell that the midwife was worried.
Ever so slowly his colour started to improve and his heart rate stabilised over the course of half an hour. We anxiously watched his heart rate monitor. Rachel came in half way through his ordeal, and he was still a bit shaken up, poor Rach wouldn’t have expected to see him in poor condition considering how “well” he was earlier that day.
I got a kangaroo cuddle stamp for our skin to skin time, and so did Hugo’s file 🙂
Rachel got given his first pooey nappy (sorry Aunty Rach!).
Mummy and Daddy decided that would be the only cuddle he would have that day – possibly the only cuddle he would ever have, because we didn’t want to put his life on the line like that again. We were proud to have the opportunity to make these decisions as parents.
We sat with him for the rest of the day. We sung happy birthday to him when he was 24h old. That night I started to read him Jack and the Bean Stalk, which is the story that I read to him on belly buds (a special adhesive speaker system) in the womb. Rachel and David were both there. We crowded around his lowered cot as I read.
The cots in the NICU can have their sides lowered so that you can get super close to your baby. I read for around 20 mins before we all got a bit tired and Hugo fell asleep, so we said goodnight to Rachel and Hugo and drove back to our home in Nundah.
WEDNESDAY – Hugo’s third day
I called the hospital as soon as I woke up, and they said he had dropped to 100% oxygen once overnight. Eep. That doesn’t sound good at all.
When we came in on Wednesday Hugo had little baby earmuffs and tiny hand rolls. His midwife had made the hand rolls so that he wouldn’t get pressure sores (because his fingers were a little stiff and bent inwards). His other midwife put the earmuffs on because there was drilling and construction noises that day.
The motherly midwife had looked after him the night before. We walked in to the NICU and Hugo opened his eyes before we even started talking to him. Daddy gave him massages to stop his bed sores, and spoke to him softly. He cuddled his fox that Bunty had lovingly knitted for him.
Rachel came down and stayed the morning in the NICU while waiting to check out. By today his hair was getting nice and fluffy. Rachel got to give him a feed of her milk.
It was then time for cuddles with Daddy. David put a gown on. 3 nurses helped, together with Hugo’s midwife. They gave him a suction before to try and avoid the problems from the day before. They accidentally clipped the thing holding the respiratory cables on to David’s skin when they meant to put it on the gown – ouch. David didn’t understand how they wanted him to lay in his arms, so it took a bit of explaining, but once he was there he was nice and warm.
David felt very happy, and said it was nice to feel Hugo’s heart beat when holding him. He looked very peaceful, and his heart rate dropped 10-20 points which told us that he was very comfortable. David didn’t want to hold him for too long in case there was a repeat of yesterday. He held him for around an hour. Hugo transitioned back to the cot very well (a minor increase in oxygen but nothing like the day before). The midwife suctioned his secretions as soon as they put him back too, which kept Hugo very happy.
After david had a cuddle, he sat with him for the whole afternoon. I went to go and sleep in Rachel’s hospital bed while she read a book on her Kindle, waiting for Simon to come. When Simon came, Rachel woke me up to say that they were going to go and visit Hugo in the nursery and that I should keep sleeping. I went back to sleep so fast, knowing my little boy was being surrounded with love and care in my absence.
The one who cared for him the most was called Mr Fox, lovingly knitted by Bunty. Mr Fox stayed with Hugo until the very end.
Later that day, we had a “family meeting” with Hugo’s head doctor, where we made a formal resuscitation plan. This was necessary so that the hospital acted under our guidance in the event of us not being around in the event of emergency. We stated that we did not want him to endure chest compressions or adrenaline as he had shortly after birth, but we were ok with increased oxygen, and would also like to discuss pain relief.
Rachel had to sign something to formalise the resuscitation plan, which was really traumatic for all of us, especially her. I jumped up to give her squishy cuddles. The guilt I felt for putting her through this was intense. No one signs up to surrogacy for this. No surrogate ever expects to have to sign a limited resuss plan – it’s just not right.
Rachel went to have a rest, after which Simon and Rachel came in to the NICU. David was half asleep in the recliner when they came in, holding Hugo’s hand. They came in for around 15 minutes. Simon gave Hugo some kind pats. Simon, Rach and David sat down around Hugo and talked amongst themselves asking how everyone was going. After that Rach and Simon went back to Rachel’s room to pack up, and then they went home.
We finished his story of Jack and the Bean Stalk that night. We left a little earlier that night (8pm) as fatigue was hitting, and had Nandos for dinner, which would soon become a tradition.
David and I were called at 4am and advised to come in, as Hugo had pneumonia. We came in to talk to the doctor. I said to David “I think this might be time”, and texted Rach. We were both very tired but we were both ok with saying goodbye if this was time. The hospital had tried to call Rachel as a courtesy too, but thankfully her phone was on silent – I would have been mortified had they woken her up.
We drove to the hospital. David quickly washed his hair in the sink before leaving, and I got changed. We spoke to the doctor who showed us a chest X-ray and offered to aspirate his chest with a needle, to which we both declined. No needles! We did not want this little boy to know any more pain. We had a privacy screen put up around us and they ordered us breakfast and said we could have a room up on level 9 if we wanted it.
We gave Emma the day off – she really wanted to come in, but she had already given us so much, we had to force a rest on her. This is why this section doesn’t have any photos 🙂
I grabbed David’s water bottle and dipped in my fingers. I then baptised Hugo, in the name of the Father, and of the Son, and of the Holy Spirit. I wish my son would have grown up to be able to have the ability to choose whether or not religion was for him, just as I did; however in the absence of such time, when push came to shove, I wanted the big fella upstairs to know he was coming.
David and I both had a cuddle. I had one first quite early in the morning (not skin to skin this time because I was scared of what happened after he was last in that position). David didn’t put a gown on and his arm got very warm after around half an hour, so the nurses helped him put a blanket under Hugo’s head. I had 3 hours and David had 3 hours. We did not want to let our little boy go, knowing how precious our last moments with him were.
I went in to the quiet room to have a lay down, but they were drilling so I didn’t get much rest. David sent me a text saying “Miss you mummy!” from Hugo, complete with a photo, so I came back in and gave Hugo some pats, and we put him back in the cot without issue.
We decided to give him a rest that afternoon, so decided to not stimulate him too much. We just stayed with him the whole afternoon and held his hand. It was calm. We were “in the zone” and enjoying being with him. It was calm and relatively quiet for the NICU. It was perfect. We both reclined and gazed at our perfect little man. It was so nice.
Hugo was booked in to have an MRI that afternoon, but it got cancelled due to a mix-up with his paperwork (someone at radiology thought that extra prep work may have to be done due to his condition).
That evening he was very awake, we were planning to go home, but as soon as we were he was like “BING!”, awake! Hi guys!! He was probably awake for another half an hour, so I decided to see if the Kunde Girls wanted to Skype.
We Skyped with the kids. We had to be a little quiet so as to not wake everyone in the NICU! Ciara poked her head around from the side with a wide smile, Addy was grinning from ear to ear, and Britt was standing there beaming. Hugo fell asleep by the end of the Skype (he was awake in the beginning). I was so so glad that they were able to meet him.
We drove home, content to go home (and very tired). We decided to try and have a “proper” dinner, and bought a BBQ chicken from woolies, some salad and wraps. When we got home I tore the chicken open with my bare hands and ate it over the sink, cave-man style and then went to bed. David had 2 wraps, somewhat more civilised.
I called the midwife as soon as I woke up. She said that his oxygen had dropped several times overnight but because he had stabilised every time she had not called (thank you lovely lady :)). It was her last shift with him, and we wanted to make sure to say thank you. She was bashful and said it was her honour. David came out of the shower and suggested that I ask Rachel if she wanted to have a hold, so I messaged her and she said she would love to. I called Emma the photographer to let her know, and she was on it!
We got to the hospital at around 8:15am because he was planned to be prepped around 8:30 for an MRI, but then that got delayed to around 10:30. His chariot was like the “Land Rover” of cots – it had everything he needed onboard, oxygen and suction kit. A new midwife was looking after him today. She was a little rougher with him so we were a little anxious. Two orderlies, the midwife and a doctor from Switzerland came with us for the walk from the Mater Mothers hospital over to Lady Cilento children’s hospital.
Hugo had a wrist band with his Lady Cilento patient number, as well as his 2 mater ankle bracelets. On the way there he saw sun on his face when we were on the bridge between the salmon building and Lady Cliento. He was in a humidicrib, and we were able to open the little window and say hello before and after he arrived. We held the doors open for the orderlies.
We got there and it was all pretty quick. The Doctor and the Anaesthetist briefed us on what they were going to do, and we asked some questions, and spoke to them about our rescuss plan. We didn’t mention anything about needles. We were then escorted to the waiting room outside and went to go and get a coffee and a hot chocolate from the caf. They said it was going to be 35-45 minutes, after 45 she came out to say it would be a bit longer because they wanted some more pictures. It was 1.5 hours in the end, when they came to get us. I lay down in the waiting area and a little boy came and said hello. I was freaking out on the inside, why was it taking so long? David was calm and patted me on the head.
When we got back to the scan room they told us what had happened. They said they lost pressure in his chest and so did a scan of his chest too. They said that they had to do a suction and put him up to 100% oxygen during the procedure, and that they had tried to cannulate his hand. I was pissed off. The anaesthetist looked sorry. I wished I had been clearer about no needles, and was very frowny, but didn’t bite the doctors head off even though I felt like it – the anaesthetist was obviously just exercising his professional opinion in an emergency situation in order to keep my little boy alive, and for that I could never hold a grudge despite wanting to.
Hugo took a long time to go back because it took a long time to get someone over to help. He was very stable – the machine was just helping him to breathe the air in and out – it wasn’t supplying any extra oxygen. We joked that the MRI had fixed him. What an ordeal though!
Hugo had a feed. Sadly, I had a feeling it was his last.
Rachel then came in for a cuddle. I was so happy to see her, and so thankful that in my sleep deprived state that hubby made sure she came back in for a cuddle. I would have kicked myself if that hadn’t happened. It was such a whirlwind.
When they moved him to her, his heart rate dropped and oxygen requirements went up to 100%, but it quickly stabilised while Rachel was holding him. Rachel looked at his heart rate monitor with care.
Addy and Simon were there too – standing at the door initially because they were told that they couldn’t come in due to NICU protocol, but the midwives waved them in as soon as they saw them. It warmed my heart how much the staff at Mater allowed us the freedom to relax their rules when it truly mattered.
He was stable and awake while Addy was there. She said how cute he is and how much she loves him. This little girl is the light of my life – for everything we have been through, Addy has always been there for a big hug and excited smiles whenever we are around. Her love is as pure as I have ever seen.
Addy knows I have a soft spot for her, so she tried to use her charms on me to get my cherry ripe that day, but for the first time ever, I resisted! David and I had snacks for lunch – a whole box of Le Snak – very healthy. Rachel had a lovely cuddle where she gazed at him and cuddled him. Simon and Addy went out and chased some Pokemon and took over a gym while Rachel had cuddles. It was a beautiful thing to be there for.
The nurses did a quick swap between Rachel and David, and his stats stayed fine while they were swapping over.
Rachel said goodbye and left with Addy and Simon. David had a lovely cuddle. I knew it was my turn next.
And now for the hard part…
It was obvious to us, as well as Hugo’s doctors, that his condition was deteriorating. As he was unable to move, he was unable to tell us whether or not he was in pain – we had to guess by looking at his vital signs. He was becoming increasingly more fragile, and so 3 of Hugo’s doctors came around at our request, and we spoke about the kindest way to withdraw his ventilation support. No parent should ever have to make this decision for their child; but when the choice is between prolonged suffering or not, we knew what we had to do. We wanted his pain medication increased so that he would not be in pain. There is only a certain amount of pain relief that medical professionals are able to administer; as they cannot assist death, which too high a dose may lead to.
We spoke about the “gasping” reflex that those with breathing issues often experience when support is withdrawn. We so so hoped that it wouldn’t happen, but I insisted on being there and watching over him regardless of how hard it may be to watch. It would be my greatest honour and responsibility as a mother – and also the most utterly f*cked (excuse my french) thing that I’d ever have to do.
We did a straight swap from David to myself. Hugo was asleep through it all, quite possibly due to an increase in pain relief. There was no way that we could say goodbye while he was awake, so I sat there for a while making sure he was comfortable, before I asked David to please go and get the midwife.
I instructed her to please make sure that no machines would make any noise while his support was being withdrawn. We asked that they please leave the pain relief line in, but remove all other lines. We wanted to make sure that his skin would not be pulled while they removed the tape from his face (which was holding his breathing tube in). The motherly midwife assured us that it would not hurt, because they use some sort of nice removal stuff.
I asked for his heart rate monitor to be removed first as I cuddled him close. He wouldn’t need it where he was going. I then asked the other midwife to please turn off his ventilation machine so that it would not alarm. I watched Hugo’s face to make sure he was not in pain, and I could feel his little heart beating through the back of his chest on to my arm. I know that he couldn’t have told me otherwise, but I felt like he was at peace in those last moments.
He never took a breath, but his heart kept going for maybe 10 more seconds. The midwife came to gently remove the tape. I could tell he was gone, and I looked over to David and gave him a little nod. David was holding Hugo’s hand, and as soon as she turned off the breathing machine he could feel him go cold. The tube was removed, and the midwives left us together as a family. We sat there for a few minutes before I asked David to get the midwife to remove the pain relief cord from his umbilical cord.
The midwife came and asked if he was gone. I told her that he went right after the machine was turned off. It was very quick, and he did not gasp. I asked her to please remove the line, and she came and did it with a bit of tugging and fiddling around. He bled a little which was upsetting, a few spots landed on his blanket that I had made him, but the midwife soon stopped it.
Then the bereavement midwife came in. I told her it was quick and peaceful. Another doctor came in and asked if it was ok if she performed a small check to confirm his passing. She listened to both sides of his chest with her tiny baby stethoscope and then told Hugo may you rest in peace, as she stroked his head lovingly with her hand. I thanked her for everything she had done, and she left.
I told the midwives that I am sorry that they had to have this on their shift today, and that we sincerely appreciated everything they had done for us. We would not be coming back down, so we made sure that we had everything before we left. The bereavement midwife took us upstairs in the lift. I carried Hugo with me very carefully, careful to take small, slow steps so as to not disturb him in his sleep. We came to the room upstairs on level 9 where the bereavement midwife had some towels laid on the bed. I told her that I wanted to give him a bath and dress him. I told her to please let Emma the photographer know that I did not want any photos today – I was so dead set against it at that time.
Emma came in and said goodbye to us, gave me an enormous warm hug, tears running down her face.
David held Hugo against his chest while I ran the bath – Hugo dribbled all over David. The midwife let us know that babies do what babies do, even in this state – they poop and vomit and dribble still. I got out the bath soap that a dear friend of mine had given me for him.
David lay him down on the bed and I unwrapped him and took off his nappy. He’d done a massive poo for me, so I wiped that up and was about to put a clean one on when David said “uh aren’t you going to give him a bath?”, The midwife said she loved how awkward we are. She gave me a quick lesson on how to hold a baby in the bath, and I picked him up and plonked him in.
His little legs dangled around freely like froggy legs – he looked so peaceful. I had a hard time holding him properly because I was so afraid to hurt him in this floppy state, so the midwife suggested that I just hold the back of his head – he wasn’t going anywhere. It was only then that I truly appreciated just how much muscle the little man had while he was alive – he was using every ounce of strength that he had just to avoid going floppy.
I slowly lowered his head in to the water, and washed his beautiful hair. It felt so long and soft. I continued to wash him before taking him out to put him back on the bed. The midwife said to start from the top and work my way down drying, so I did, with love and care.
I put on a new nappy and clothes on him. He then decided after being fully dressed that it would be a good idea to bring up his last feed, like all good well calculated babies. We slowly rolled him on to his side to drain it, and it soaked through on to his lovely new white clothes. I took them off and gave them a good wash, dried them out using the old stomp on the towel method, and put them back on. The midwife offered to tumble dry it, but I said eh, this is babies, this is what I would do if he were alive.
We asked the midwife “what happens now?” and spoke about an autopsy. I found that it was a really confronting conversation to have, David felt like it was a good idea. We said we would think about it over the weekend, and told the midwife that she is doing an amazing job in communicating these things to us in a very thoughtful manner. She was utterly amazing at her job, and is an utterly amazing human all ’round.
I put his little bear hat on and scooped him up with both arms off the bed. It felt just so natural, not at all pre-meditated, and had a cuddle, just staring at his perfect little face. We both felt as though it was time to say goodbye for the evening, so we spoke to the midwife and asked where Hugo goes now. She said she would take him down to the mortuary, he would have two little friends with him there that night.
I sent out a text message to Rachel and my mum.
We left the room and got in to the lift and I let out a big ugly cry. “I just don’t want to say goodbye”.
We had Nandos for dinner that night to remember Hugo, as it had become our go-to post-NICU feed. We raised our glasses to him before going home to sleep. We got about as much sleep as any other night that week.
I woke up with mega regret about not getting any more photos of my gorgeous boy. I sat staring at the few photos that David had taken on my phone, knowing that I would have to ask Emma to come back. It turned out that she was SO happy I had asked her, as she felt as though she wasn’t “done” yet. What an absolutely gorgeous human.
The day was pretty relaxed and chilled. We didn’t see anyone. All we had the energy to do was touch base with Rach so that she knew we were ok and vice-versa. “OK” is of course a relative term here 🙂
I went to the outlet shop while David went to the gym. I felt like shopping again for the first time – dangerous!
We went to Redcliffe and ate some amazing fish and chips, and took a walk along the beach. I rescued a ladybug off of a rock in the ocean. That night, we reunited with our amazing surrogate family, and came over for a roast. That evening, Rach’s girls excitedly emerged with a box for me. What on earth could it be?
This was not any ordinary bear. It was a build-a-bear, with Hugo’s actual heartbeat (from a doppler in utero) put in a speaker, so when its hand is squeezed, he comes to life. So so so so sooooo thoughtful <3 It now sits in Hugo’s nursery, and every time I play it, happiness overcomes me.
Today we went in to see Hugo again with Rach and Emma. It was a few days post-death, so his appearance was a little mottled, and he was cold. David didn’t like to see Hugo that way. I totally get it. Everyone’s different – heck I anticipated not wanting to see him either, but once put in the situation, my needs totally changed. I was weirdly comforted by being in the presence of his body – all I knew was that it wasn’t time to say goodbye just yet. Thankfully this is a common occurrence for bereaved parents, so the hospital is more than accommodating – we could see him whenever we wanted to in the privacy of our own room.
Rachel and I loved seeing him, and gave him cuddles. Initially I was quite confronted by his coldness, but the more time I spent with him, the more time I wanted to spend with him.
David and I have grown as a partnership during this time, for many reasons. One of the most prominent being the realisation of our different grievance processes, and unquestioning respect for said differences, even in the toughest times. I was absolutely fine with him not wanting to spend time with Hugo after his passing, and likewise he respected me needing as long as I wanted. This experience has shown me how well our relationship works, even when under the most unthinkable of pressures. It took us different amounts of time to be comfortable with various life choices for our son during his life; however with each and every decision, we remained respectful and took every effort to understand each other and present as a united front until well after his passing.
Emma our photographer got called to another birth, but said she was not done with us.
I said not to worry, I would come back in with her tomorrow. Hugo was able to spend as long as we wanted in the outside world, as we had a cold cot donated by a fellow Intended Mother from the surrogacy community. I was so looking forward to coming back in the next day.
Today, after careful consideration, we consented to Hugo’s autopsy. We were able to decide just how invasive it was to be, and decided on a full autopsy, where all organs would be removed, measured and weighed. Our rationale was that if we had died of unknown causes, that we would have wanted our parents to know absolutely everything they could in order to know how to plan for the future, and to know more about what we went through. I was very firm in telling everyone that Rachel was not to be asked to consent to anything because she has been through enough. Everyone was incredibly supportive, and they let me sign the forms, even though legally I was not yet Hugo’s mother.
The surgeons who were to perform the autopsy were a husband and wife team, who had lost their own child. Apparently they ask for the child’s name, and talk to them throughout the surgery. After the operation, the organs are returned to the body, and they are left resting as they once were, with the exception of the brain, which is floated in a hardening solution for a few weeks before being biopsied and examined. We then chose to have his brain cremated separately, with the ashes scattered in a memorial for lost infants.
I went in to have some alone time with Hugo. Emma came. We took some photos of him in the sunlight coming through the window, and also took him in the pram and went outside.
We walked around the nunnery to find some grass.
I wanted to show him some wisteria too, so we luckily found an arbour. The wisteria is one of my favourite flowers. It has a very short time between dormancy, flowering and leaf growth, which coincided with Hugo’s life, so we will always remember Hugo when our wisteria blooms.
I wanted to have some more alone time with Hugo, so sat in the room with just him. I prayed with him, thanking God for Hugo, for everyone who loved and cared for Hugo, and for everyone that Hugo loved. I sang “you are my sunshine” to him, before the midwife came back in as asked. We sat and chatted for a while, before I told her “I want more time with him”, so the midwife went and came back later.
It was just him and I, and it was bliss. I had a big cry with Hugo, and then called David to tell him about the autopsy, and that I had asked for it to be done that afternoon. I was ready to say goodbye to Hugo’s little body – the body that fought so hard to meet me. I was grateful.
I tucked Hugo back in to bed, gave him a kiss and told him that the lovely surgeons would look after him. I loved seeing him that day, but tried to not think too much about what would happen that afternoon as it was upsetting.
None of that mattered though, because I was, and would be forever more, a mum.
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.
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.
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.
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.
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?
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.