9

Hugo’s diagnosis

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 ūüôā

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 Рeither 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

9

Hugo’s life story

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 ūüôā

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:

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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 Рnot 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.

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Rach and I had both brought in a stash of milk for bear. They put mine¬†in storage, and Rachel‚Äôs 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.

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We  eventually all walked to theatre together and waited anxiously.

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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.

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Rachel didn‚Äôt 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.

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I was a bit miffed at being asked to stop, so instead grabbed on to anything else I could find Рapparently 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 ‚Äúholy shit can you see how much they‚Äôve sucked out?‚ÄĚ it was A LOT. They lowered the curtain and I¬†squealed a lot.

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Rachel¬†asked us¬†what we had, and I¬†said ‚Äúit‚Äôs a boy!!‚ÄĚ.

hugoBear was then taken to the resus room Рa 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.

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We sat there for 9 minutes, after which our photographer said ‚Äúit‚Äôs good that they haven‚Äôt said anything yet‚ÄĚ.

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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 ‚Äúyou have a very sick little boy‚ÄĚ 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 ‚Äúthank you for breathing for our son‚ÄĚ. 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.

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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 РI 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).

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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 ‚ÄúI didn‚Äôt get a name!‚ÄĚ in her text, and I replied that she‚Äôll 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.

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Rachel and Simon came in. As they wheeled Rachel up she asked me ‚Äúwhat‚Äôs his name?‚ÄĚ and I said ‚Äúthis is Hugo‚ÄĚ. She said ‚Äúawww Hugo!!‚ÄĚ and smiled.

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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.

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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.

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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.

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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.

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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.

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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.

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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 ‚Äúyou need to call me if there is any sign of you having a cuddle, like even if it‚Äôs 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‚ÄĚ. I hadn‚Äôt 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‚Äôt 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.

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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 Рit 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 ‚Äúom nom nom‚ÄĚ 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‚Äôt 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‚Äôs 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.

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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 ‚Äúthis is Bunty (mum really wanted herself to be called Bunty – it’s a bit of a family joke), she‚Äôs your grandma‚ÄĚ.

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I told mum that he only opens his eyes for people he likes, and she said ‚Äúthe pressure is on‚ÄĚ. 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.

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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.

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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.

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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.

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Once all the commotion had died down and the nurses were happy and went back to their routines, I mouthed to Rachel ‚Äúthank you‚ÄĚ, and she batted me away with her hand as if to say it was nothing.

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I sat there for 3 hours, where time stood still.

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15271818_10154367008024915_3012476347670511996_oThey 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.

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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‚Äôt have expected to see him in poor condition considering how “well” he was earlier that day.

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I got a kangaroo cuddle stamp for our skin to skin time, and so did Hugo’s file ūüôā

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 Рpossibly 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.

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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.

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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.

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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‚Äôs skin when they meant to put it on the gown – ouch. David didn‚Äôt 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.

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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‚Äôt 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.

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15304259_10154367010859915_4556466061618055086_oThe one who cared for him the most was called Mr Fox, lovingly knitted by Bunty. Mr Fox stayed with Hugo until the very end.

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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.

THURSDAY 

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 ‚ÄúI think this might be time‚ÄĚ, 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 ūüôā

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‚Äôt get much rest. David sent me¬†a text saying ‚ÄúMiss you mummy!‚ÄĚ 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 ‚Äúin the zone‚ÄĚ 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 ‚ÄúBING!‚ÄĚ, 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 ‚Äúproper‚ÄĚ 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.

FRIDAY

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 ‚ÄúLand Rover‚ÄĚ 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‚Äôs hospital.

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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 Рthe machine was just helping him to breathe the air in and out Рit 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.

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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.

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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 Рstanding 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.

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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.

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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 Рa whole box of Le Snak Рvery 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.

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The nurses did a quick swap between Rachel and David, and his stats stayed fine while they were swapping over.

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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…

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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 ‚Äúgasping‚ÄĚ reflex that those with breathing issues often experience when support is withdrawn. We so so hoped that it wouldn‚Äôt 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 РI 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 РHugo dribbled all over David. The midwife let us know that babies do what babies do, even in this state Рthey 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‚Äôd done a massive poo for me, so I wiped that up and was about to put a clean one on when David said ‚Äúuh aren‚Äôt you going to give him a bath?‚ÄĚ, 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 Рhe 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 Рhe wasn’t going anywhere. It was only then that I truly appreciated just how much muscle the little man had while he was alive Рhe 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¬†‚Äúwhat happens now?‚ÄĚ 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.

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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.

SATURDAY

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‚Äôt 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 ūüôā

I went to the outlet shop while David went to the gym. I felt like shopping again for the first time – dangerous!

SUNDAY

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?

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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.

MONDAY

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‚Äôt 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.

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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.

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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.

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15288522_10154367020274915_6350012396310710434_oEmma 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.

TUESDAY

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.

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We walked around the nunnery to find some grass.

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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.

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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 ‚Äúyou are my sunshine‚ÄĚ to him, before the midwife¬†came back in as asked. We¬†sat and chatted for a while, before I¬†told her ‚ÄúI want more time with him‚ÄĚ, 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.

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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.

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.

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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 ūüôā

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 ūüôā

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.

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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 ūüôā

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 ūüôā

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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 ūüėÄ 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!

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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 Рeverything 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 Рthere’s a small chance that she may go in to preterm labour. It’s small, but it’s still a definite risk РI 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 РI 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 ‚Äútoo much!‚ÄĚ

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

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1

Hello out there! :D

Many moons between blog posts!

So much has happened in the last 5 weeks and I’ve definitely let blogging slip by the wayside, dedicating more energy in to real-world activities like nursery preparations and traveling. It feels like we’ve hardly been home! We have had quite a break between visits to Brisbane (5 weeks felt like eternity!), but going back last week makes me realise that even with time between visits, we seem to pick up right where we left off, and slip right back in to the same fun bubbly energy and enjoyment of being in the same room.

Rachel is 29 weeks pregnant! Far out!!

She couldn‚Äôt wait to show me how big bear has gotten – and she wasn‚Äôt lying! Our clever tummy mummy has been building an olympic sized swimming pool for the little one (which I have affectionately nicknamed ‚Äúthe mansion‚ÄĚ), which can‚Äôt be at all comfortable. In her own words ‚Äúif it‚Äôs worth doing, it‚Äôs worth doing properly‚ÄĚ. This also means that Bear is quite mobile in there, and sometimes causing a world of discomfort for Rachel. I‚Äôd like to be able to give Bear a stern talking to about this sometimes, but at the end of the day I have to accept that this is not in my control. This has been my focus for learning this week ūüôā

Rachel always seeks to take it in her stride, but sometimes I wish that just for a few minutes I could take on her discomfort and give her the break she so deserves. I don‚Äôt think I‚Äôll ever be able to fully comprehend the magnitude of sacrifice that Rachel and her family have gone through, and continue to go through for us. I always thought that the pointy end of labour was the worst bit; but Rachel really put it all in perspective for me last week when she said ‚Äúlabour is the easy part!‚ÄĚ.

I feel as though we are approaching a time where our ability to work together and communicate as a team is really important. There are increased risks associated with how things are progressing, so we all have our fingers crossed that Bear starts swallowing some more fluid to lighten the load on poor Rach. Having no control over how things will play out just comes with the territory I guess – it‚Äôs a really weird feeling not being able to do anything apart from wait it out and see what happens. I think we‚Äôre all still coming to terms with what all this might mean in terms of risks over the next few months, and mode of delivery. We‚Äôll have to wait and see what happens ūüôā

So our dear love will be having fortnightly scans now to keep an eye on things and take it from there. The whole interstate thing is a bummer with increased appointments – my heart wants to be at everything, especially now that even more are being added, but logistically living interstate is a challenge. Luckily though, we are only a few hours away by plane and consider ourselves to be ‚Äúon call‚ÄĚ at all times, and would never consider jumping on said plane a challenge if the pregnancy deals us those cards.

Roll on September I say! We‚Äôll be up in Brisbane for an extended stay, which I am so so SO looking forward to. Rachel and I will both be on maternity leave together, and our list of plans grows longer by the day. It‚Äôs nice to have something to focus on ūüôā It‚Äôll be nice to be able to relax in to things before the whirling tsunami of new parenthood hits.

Well, that’s the plan at least. I hear babies don’t often go to plan, so watch this space!

Our other exciting news is that the whole team will be together in Adelaide this weekend! Up until now it’s just been Rach visiting us or us visiting the family. I can’t wait to have everyone here!

We plan on celebrating bear‚Äôs arrival with a morning tea and some commemorative photographs ūüôā I can‚Äôt wait!! ūüôā

P.S. here’s our little bear!!

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7

20 week happenings :)

We have hit the 20 week mark and there’s so much to talk about!

Last weekend we flew up to Brisbane for Rachel and Bear’s 20 week ultrasound. It had been 2 months between visits, so it was extra awesome to give her 2 months worth of hugs! All was right in the world once more, and¬†we are pleased to report that Bear looks¬†totally normal. All its bits are in the right place and within range of normal measurements (but the poor thing has my big head!). The ultrasound technician asked if we wanted to know the sex, to which we all replied a resounding “no!”. I get more and more excited about it being a surprise the further along we get, so know that we made the right decision.

Prior to the scan, we hung out at the Southbank beach and ate gyoza (yummm!). I was so content, I could have stayed at Southbank with my feet in the water all day! We had to move on though, as I had an appointment with the hospital’s lactation consultant. Hubby, Rach and I piled in to her little office, where we started chatting about all things feeding. Induced lactation is not a¬†usual case for lactation¬†consultants to deal with, so she was very¬†interested in and enthusiastic about supporting me, which is fantastic.

She asked if I wanted a demonstration on how to hand express. I said sure, why not! Rach scuttled out of the office and hubby followed. While Rach and I are great¬†friends,¬†even the greatest¬†of friends don’t¬†need to be mentally scarred with real-life-boob-squeezing demonstrations, especially without the consumption of alcohol prior. What followed was the highlight of the appointment. I made the lactation consultant speechless – I don’t think she expected me to make milk! She sat there with mouth¬†gaping, just saying “oh my god, oh my god, do you know how amazing that is?!”. It’s old news to me, but it’s nice to know that the milk tanks are in good working order.

The following day we’d organised to visit our surrogacy counsellor.

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Counselling throughout pregnancy is something that we’d all agreed was important from the start; but as the process got underway and our relationship developed strongly, we questioned whether counselling was still worth it. I eventually decided¬†that I’d still like to do it, because no one ever¬†says “dang, I wish I hadn’t gone to the counsellor”. So off we trotted. I was a little nervous about whether I was dragging everyone along for nothing, but after the session I was convinced it was an excellent thing to do.

This was actually the first counselling session that Rach, hubby and I have had together, as South Australian legislation did not require us to do so prior to forming an agreement (which is a bit weird if you ask me!).

We sat down for an hour of talking¬†about how things are going, and how everyone is feeling. Hubby sat there with his listening face on as he often does, quite content with our chatter filling the air, happily prompted by the counsellor to join¬†in. I watched in admiration as the woman carrying my baby spoke with the same honesty and insight as I first grew to love her for. I still get butterflies in my tummy¬†every time she talks about surrogacy, because it’s such a powerful part of who she is. It was so lovely to have an hour of “right, we’re going to talk about surrogacy now”, because being friends, we are prone to fill our time¬†together these days¬†with pictures of cats, quality¬†shows on foxtel, crochet, or content from questionable subreddits. Affirmation that we are all on the right track surrogacy-wise was valuable.

The hardest counselling question for me to answer was “How will you feel after you leave Brisbane with your baby?”.¬†I could feel my eyes welling up just thinking about it.

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Actual picture of me attempting to answer the question

After going through a hundred¬†adjectives in my head, I eventually settled on¬†“Sad. I’ll feel sad”. In that moment I could see that this is something that I need to work on. Have I become more focused on surrogacy than I have on parenthood?¬†I need to be OK with leaving. I need to be able to embrace this new chapter of our adventure, by¬†celebrating the milestone of moving on, and be content in knowing that leaving is not the end of our surrogacy relationship. Rachel said that¬†us leaving and becoming a family by ourselves out in the big wide world is the reason why she¬†is doing this – so for her it will be exciting. To hear her say that¬†really put everything in perspective. I need to be OK with saying goodbye.¬†Good thing I’ve still got a little while¬†to work on it ūüôā

So an issue¬†that I didn’t even have on my radar as something to work on, was presented with great clarity, and for that I give great thanks to our counsellor for facilitating.¬†And that is one of the many reasons why this counselling session was worth it.

My other reason for writing this blog post is to give thanks for it being¬†one year since Rachel offered to be our surrogate. What people¬†may not realise is that in offering to be a surrogate, one is not just¬†offering to carry one’s child. Rachel¬†was offering to hug me so tight that all the puzzle pieces would come¬†back together. She was offering to keep my body alive, safe and well; to carry my child to safety with love and care, to forsake some of her own freedoms to free my soul, to restore bounciness in my step and happiness to my heart, and through her altruism create a desire within me and those around us to pay it forward.

It’s hard to put in to words how I felt on this day one year ago. I knew in my heart that Rachel¬†was somebody who I could trust with all my being, someone who I respected greatly, someone who I aspired to be like, and someone who I would love¬†to share the joy of motherhood¬†with. To commemorate this day, I would love¬†to pass a tiny piece of Rachel’s goodwill on to another family who are on their path of¬†parenthood.¬†So in Rachel’s honour, I give thanks¬†today by donating to a Western Australian family surprised by 5 (Quintuplets). There has been a fundraising campaign for them to be able to have the freedom of a car with capacity to carry their¬†whole family, as they currently need help to get to medical appointments. So today I pass on a donation in Rachel’s name, so that her generosity may live on to help another family facing challenge of a different kind.

I will leave this blog post now with a happy heart and smiley face, wondering what life will be like in another year’s time. One thing is for sure – I’ll have a new name – “mum” – thanks to a very special someone ūüôā

 

 

8

Happy Anniversary Rachel!

Yesterday was Rachel and I’s one year anniversary since meeting. This time last year we were put together in a group chat on Facebook by a mutual friend¬†saying that we had to meet one another.¬†Look what we’ve done since then! I totally got her pregnant, aw yeah.

It’s amazing what can be achieved in a year, not only in terms of surrogacy, but I’m also astounded at how I just happened to cross paths with someone who is now such a great friend. I notice that as I grow up I’ve become more¬†complacent to seek new friendships (as my current friends are pretty darn awesome! … and I’m lazy), but being in the surrogacy community has really opened my eyes to all the awesome people out there that are just waiting to be met¬†ūüôā So happy anniversary for yesterday Rachel¬†– let this be the first of many!

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In another year’s time, I expect that we will have learned even more about each other. How we¬†navigate new¬†times of intensity, distance, extreme fatigue, stress, pain and pure joy. I think that surrogacy is probably one of the most involved¬†and intense things you can do to learn about a friend, and so far we seem to be going from strength to strength by acknowledging the good bits and the tough bits. Even in times of conflict (which every¬†friendship eventually faces to some degree), I hope that at the end of the day that we’ll be able to strengthen the solid base we’ve worked on building. There is no denying that surrogacy is tough,¬†things go wrong and to that we are not immune; but going in to it eyes wide open with top priority placed on honesty I think gives us the best chance of success.

Anyway, on an entirely unrelated note,¬†I really want to tell you a little more about the hospital we’re working with, because they are pure awesome so far! Rachel spoke about some of our appointments in her last post, but since then I’ve had more contact with the hospital; in particular the surrogacy coordinator, and a lactation consultant (read more about my plans for inducing lactation here).

I am floored with how helpful everyone at Mater Mother’s¬†Hospital has been. We have been given the option to rent a room in the hospital (hopefully) adjacent to Rachel’s, which we plan on doing so that the option is there if anybody wants or needs some space, or not, as the need arises. This is all through the public system, and so I am floored by their flexibility. I’ve had some really lovely and supportive phone calls with various people too, and so far would recommend the hospital and their lovely staff¬†with flying colours.¬†I’ve also had some emails with a lactation nurse, who has booked me in for my very own appointment when next in Brisbane!

Which brings me to my next exciting piece of news…. I have started to¬†make milk! TMI? You may want to skip reading the next paragraph then! 7 weeks after I commenced a modified Newman Goldfarb protocol¬†(which was coincidentally the day after our 12 week scan), I noticed my boobs felt weird. So I gave them a bit of a prod, and lo and behold out came some milk! I excitedly galloped down the hallway¬†and¬†immediately told everyone I know. My poor friends! It was seriously one of the most exciting things to happen to me in my whole life, on par with the time that a small portion of my arm made¬†an appearance¬†on Eurovision.

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I’m not even joking.

Our¬†other news is that we¬†have officially commenced serious baby shopping! While this might not seem like a big deal to some, to me it’s something I’ve “dreamed” of for years. I never had dreams of the perfect wedding or house or anything like that growing up, but I’ve always had this idea that pram shopping was¬†going to be a special day. I was so set on making it special¬†that I ended up doing¬†it over two days! The first was with hubby, where we narrowed it down to two contenders, and then the second day was spent at a baby expo, where I put in an order for the one we were leaning towards (and¬†it was on sale – bonus!). We’ve also started to think about cots and think we’ll be going with something from IKEA – they seem good quality and are very reasonably priced.

I also promised that I wouldn’t buy any more baby clothes, but that only lasted a week. Oops.

Sorry, not sorry!

3

Letting the cat partially out of the bag

We’re only 10 weeks and I already have 10 outfits per day planned for this child until they’re 18. Oh dear.

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I don’t have a shopping problem. I can stop annnnnnny time I want to…

In other news, hubby and I¬†told our parents. In some ways it was fun, but if I’m entirely honest,¬†I don’t think I was ready for the avalanche of excitement and “our news” all of a sudden becoming “everyone’s news”. I guess this is something to get used to once personal¬†news is in the public domain (I can see the irony in writing this…. I’ve been blogging in public the whole time, but ‘real life’ public feels¬†different).

I really enjoyed the weeks of quiet time that we had while the news was just our special news for the team, our closest support people,¬†and those in internet-land. Now that the grandparents have hold of it it’s at another level! Of course our¬†parents always knew we were pursuing surrogacy and have always been¬†overwhelmingly supportive,¬†but I made the decision that once we started transferring to “don’t call us, we’ll call you”. I am really glad we did,¬†as it allowed us all space to breathe.

Anyway, we tried to surprise them with the updated “news” together as one family when we were all in the same place at the same time (which seldom occurs for logistic reasons); but there’s not much to surprise people with when it comes to surrogacy (unless you’ve kept everyone¬†in the dark prior).

I was a little bit sad that I couldn’t say “Surprise!” in the usual way that people get to when it’s their own pregnancy, you know, you’ve all seen the adorable YouTube videos of people putting a bun in their mother’s oven and watching her reaction. My version would be something along the lines of¬†“Surprise!¬†We found out that I have a series of diseases and after a lengthy period¬†of various consultations and meeting this awesome chick who lives on the other side of the country and going through counselling and legals and a few transfers in a questionably designed chair now she’s¬†PREGNANT!” – doesn’t quite have the same ring to it.

Mum is a clever little bunny and had it all figured out that the news was about to be dropped. She’d told my brother what her suspicions were too, haha. She’d also told all of her friends, and was most displeased when I requested to not make the announcement public until we’d had our 12 week scan. Sorry mum!

I’m having to warm to the idea of it not just being our news now, which initially was a really weird feeling, but I think I’m getting there ūüôā I can only imagine how this must feel from a surrogate’s point of view – if I’m feeling a bit precious about it, imagine having the decision of who to tell and where and when about something to do with your body made by someone who isn’t you? This is one of the reasons why¬†it’s super important to talk to everyone in the team about delivering important news. Really it’s not just the Intended Parents’ news, it’s the team’s news, and I felt honoured to be able to deliver it to our families, even if they’d already guessed it!

2 sleeps until I’m reunited with my lady-love! Can’t wait!