I received a phone call today from the geneticist we saw following Max’s birth. I saw her again following Nicholas’ nuchal test and once more after the MRI was done. When our care was transferred to our current geneticist, he wrote to her to update her on our situation and to get a copy of the results for the tests she ordered back in 2008.

The phone call from this doctor came as a complete surprise – I hadn’t really intended to update her on what had happened and I didn’t expect that she would really want to know. She wasn’t proactive and didn’t want to see me again until she had a post-mortem report. Anyway, she said she had been thinking of me and she wanted to know if our current geneticist had done the RET gene testing that he had intended to do (as per his letter to her, cc’ed to me, dated January). I described the events from the meeting with our team on Wednesday and we talked about his conclusion that our recurrence rate was now 25%. She said she agreed with everything he’d told me and recommended that we go ahead with the RET gene testing, even if it is simply to rule it out.

Since I had her undivided attention, I asked her to tell me what she thought we should do. It’s such a loaded and difficult question but one that I’m sure she is asked at least once each day. She said that we shouldn’t forget that we essentially have a 75% chance of having a healthy baby and went on to say that often couples are given the scary 25% recurrence rate for other conditions, including those where the affected offspring may live a short and painful life. In our case, this birth defect is always fatal immediately after birth (if the cord isn’t crushed during pregnancy or labour) but given the nature of the defect, the baby is not in any pain and does not suffer. Nicholas simply became very sleepy and gently slipped away. He never experienced pain – he only knew love. She said that given the only pain or suffering was that of the loss to myself and my husband, it wouldn’t be selfish to try again provided we were emotionally strong enough to endure another loss.

This changed the way I’ve been thinking recently. Certainly I am NOT strong enough to endure another loss but I hope that the psychiatrist will be able to help me with that and that I could try again, just one more time.

We returned to the hospital today to meet with my favourite midwife and the geneticist.  Investigations confirmed that Nicholas did not have kidneys or ureters, however he did have a small bladder which was never visualised on ultrasound or MRI.  Everything else was normal.

In summary:  diagnosis = bilateral renal agenesis, cause of death = pulmonary hypoplasia, chance of recurrence = 25%

The geneticist has suggested testing the stored tissue sample (from the CVS done back in January) for a mutation of the RET gene, which will cost several thousand dollars and will take about three months to complete.  While it seems very unlikely to be a RET mutation, we are leaning towards this option because there isn’t anything else to do.

My favourite midwife spent a long time talking about the various things that are troubling me, in particular our uncertain future and my inability to remember many of the details of Nicholas’ birth and short life.  She pulled out my file and together we read through the notes and matched our shared memories to the time line recorded by my midwife.  The husband and I had never been able to work out why the head of obstetrics was called in to check on me.  It turns out that this was because my midwives were being very cautious – they were concerned that, as this was my first full term birth and Nicholas was breech, his head would get stuck.  The HoO was called in to ensure no time was wasted if intervention was required.  She was also adamant that my decision to refuse the epidural was the reason the delivery was very fast (22 minutes from 10cm to baby on chest) and therefore very ‘easy’ on Nicholas which was why he was born alive, unmarked and ultimately survived for two hours.  While it didn’t really help me to recall the lost memories, it made the events more real to me.  I rarely get to speak about Nicholas and when I do it makes everyone uncomfortable, so being able to talk openly to someone that was there and who was such an important part of his brief life was refreshing and validating, though very heartbreaking.

My midwife’s parting gift to us was the clay hand and feet prints that were taken on the Tuesday morning before I returned to the hospital for our final cuddles and goodbyes.  They are so beautifully wrapped that I haven’t been able to bring myself to open them yet.

The last thing on our list was to find the star we bought for Nicholas.  We’d received a letter a couple of months ago, notifying us that Nicholas’ star had been added to the Wall of Stars near the delivery suite so we stopped by to check it and give it a little pat.

And so it seems that we’ve now reached the last page in the book about Nicholas, my perfect little boy, that despite being the most loved baby in the whole world, just wasn’t suppose to be.

I love you my darling.

While I was in the hospital, the social worker contacted an organisation that arranged for a volunteer professional photographer come to hospital to take photos of Nicholas.

From their website:

Participating photographers will come to the hospital or your home at a time convenient to you and will help supply you with cherished photographic memories. There will be no charge for this service. After your session the photographer will provide your family with a full set of 4×6in prints (approximately twenty, circumstances permitting sufficient variety of images). The photographer will also supply a disk of high resolution images for the family. There will be no charge for this service or these prints.

At the time the photos were taken, the photographer offered to give us the photos before the funeral so we would have them for the reflection DVD.  After many email requests, we received just three photos via email.  Each time I emailed her, she promised to “send the photos tonight” and I would spend the following days making myself sick by checking my inbox every ten minutes.  Three weeks ago she said she would post a CD containing the photos to me.  It hasn’t arrived.

It’s a free service, and you really do get what you pay for.  And if she had asked us to cover her expenses or to pay the going rate for a professional photographer, we’d have done it but we weren’t given that option.  It is killing me that this woman is holding back his photos from me – I’ve done nothing to her and tried to be very very patient.  Do I just move on and cut my losses or do I keep trying?  How many emails can I send??

Edited to add: I decided to send one more email and it bounced back.  I guess the universe just decided for me.

On my last day in the hospital, the horrible horrible day I had to leave little Nicholas and go home, there was a midwife that was assigned to look after me that wasn’t very nice.  She didn’t do any observations, didn’t help me when I told her that the food services ladies hadn’t given me any breakfast and when I was heading out to buy a cup of tea from the cafe in the main hospital foyer, she reprimanded me for carrying Nicholas.  I don’t care about the observations but she should’ve at least stuck her head through the door to see if I was ok.  And the breakfast thing made me cry but in reality I only wanted the cup of tea from the tray; they could keep their square eggs and cold toast.  But telling me that I couldn’t carry Nicholas after I was specifically told that I could provided I was discrete was just mean.  She also wouldn’t let me put Nicholas into the box that goes to the mortuary – she made me put him down in the cot and leave the room, then the hospital.  As we were walking out the main doors, she appeared behind us to return my hospital visit card (the clerk had taken it from me when I was admitted and it ended up in my file).  She gave me a big hug and wished us well then she was gone.

Some time during that day between these events, she stopped me in the hallway while I was pacing the corridors and told me that she was also working as a volunteer at Dr Hamlin’s Fistula Hospital in Ethiopia and would be going there again in April.  We talked briefly about her work and she told me that the ladies treated at the hospital arrive with nothing, usually having walked very very long distances for treatment.  She said her knitting group were slowly making blankets, headbands, etc to give to these ladies and these items give them comfort during their time at the hospital.  The midwife explained that many of these women are married by the time they are 12 and their injuries are the result of horrific childbirth complications that almost always result in the eventual delivery of a stillborn baby.  They live with these injuries for many years and are ostracised by their families.  They are fragile, timid and child-like despite having been forced to grow up so quickly.  Just like so many little girls, these women love to receive dolls and enjoy having their nails painted.

Once home again, I packed up some of the baby things I had made to donate to the hospital, and I put together a bag containing fifteen knitted teddy bears that fit snuggly in the palm of your hand.  I ran out of time and wasn’t able to embroider faces on the bears but I gave them to the social worker to pass on to the midwife.  Then I didn’t think of them again until yesterday.

Late yesterday afternoon I received a phone call from the midwife, Marianne, thanking me for the bears.  She spoke quietly and described how another nurse was now stitching little faces onto the bears and how she thought the bears would be loved by the ladies at the Fistula Hospital.  We spoke for well over half an hour and shared the story of her own pregnancy loss.  I’m not surprised at all now that she kept as far away from me as possible while I held Nicholas – it reminded her of her own loss.

She asked me how I am and I told her the truth.  I am struggling.  I cry all the time, often for no reason but for much longer and uncontrollably when I think of Nicholas.  I sleep but always wake up feeling very tired.  I have no appetite and don’t eat except for the two apples I ate in the last two days.  I drink a lot of tea and water, and I cry a lot.  Nothing holds my attention or interest anymore, if anything I care less about most things.  Two weeks ago, in a bit of a fit, I deleted my Facebook, Twitter, etc accounts and I don’t miss them.  I find it very difficult to be around people, and I’m constantly forgetting what I was saying.  When I wake in the morning, I’m already fighting back the tears.  And rather than lay on the couch in my PJs all day, I get up and shower right away and get dressed.  Then I lay on the couch all day.  The truth is that I do this only so I can use the same baby wash we used in the hospital for Nicholas’ bath — this way I can smell him again.

Marianne asked if it would be ok for her to call me again and I agreed.  We also agreed to meet for coffee when she returns and she said she will bring photos from Africa to show me.  I’m trying very hard to say yes when people ask me to go to coffee, etc.  Yesterday afternoon I went to a friend’s house and she was taken back a little when she opened the door.  My eyes are very puffy and I have dark circles around my eyes.  We sat in her kitchen and drank tea and I fought back tears the entire time.  She has a 4 year old, a 2 year old and is now 19 weeks pregnant.  I am very happy that she is pregnant again and that everything is going welll.  She fell pregnant at the same time I did with Nicholas but her pregnancy ended with a blighted ovum and I know it wasn’t easy for her to have to watch my pregnancy continue.  Another friend said she would come over on Monday but again she has a 19 month old.  I’m surrounded.

Little Nudgie’s HAPL aunties sent me a care package of lots of beautiful things to make me smile.  It arrived a couple of days ago but with funeral arrangements and all day PJ sessions, I wasn’t able to go to the post office until this morning to collect it. [Click the thumbnails to see the bigger photo]

This is the surprise that greeted me when I opened the box -

So many beautiful things!  This is everything again, out of the box -

And one more photo, this time with all the little packages unwrapped -

And a special thank you also to Robin who made two gorgeous little hats for Nudge to wear in the hospital -

Thank you ladies, everything is completely perfect and beautiful. You’re all so kind and thoughtful.  xx

As expected, it was a really tough day and I spent much of it fighting off tears and trying to keep busy until it was time to leave for the cemetery.  The funeral was as beautiful as we could make it and we were surprised by some of the people that came to support us (though I noticed my best friend didn’t come, very disappointed).  We’d decided to arrive right at the time the service was due to start so we could avoid any chitchat on the front steps – I just knew I wouldn’t be strong enough for it.  As it was, I cried from the moment we left our driveway and was a mess by the time we reached the cemetery.  I held onto Klaus as we met my sister, brother, sister inlaw and father who were waiting outside the chapel.  They gave us hugs while we tried to prepare ourselves for entering the chapel.

I don’t think I mentioned this before but a few days ago, a woman that I work with (just a colleague, nothing more than that), phoned me and asked if she could put a plastic fairy that belonged to her mother into my son’s coffin.  I really wasn’t keen for this (why would she want to put something into my son’s coffin???) and explained that we weren’t having a viewing and that it wouldn’t be possible.  So there I am, in a five-way hug with my family when this woman suddenly appeared and sort of pushed herself into our huddle to give me a hug.  She told me that “Nicholas has his fairy now” and I tried to pull away.  She had her arms around my neck and wouldn’t let go.  It was really really uncomfortable, my family had no idea who she was and so they were all looking at me with puzzled faces as I was being half strangled.  I gave the husband a pleading look and he said something about needing to go in and I was able to prise myself out of her grip.  I’d already asked my sister to sit with me and the husband, and for my brother and sister inlaw to sit next to my husband – fortunately there were only five seats in the front row otherwise I’m sure she’d have sat in with us.  It was really horrible.  The funeral attendants greeted us as did the priest and at this point my co-worker went into the chapel.  The funeral attendants were wonderful and were instructed to remove the fairy from his coffin and discard it before he was cremated.  I didn’t want that thing with him.

As soon as I walked in the door and saw Nicholas’ tiny white coffin at the front of the chapel, I burst into tears again.  We’d ordered a white floral arrangement with blue butterflies for the top of his coffin, and the ladies had arranged it so beautifully.  They had put an extra butterfly on corner edge of his coffin — it was very touching.  And there, next to his carefully arranged flowers and butterflies, was a plastic pink fairy.

Words cannot describe how much I wanted it gone.

Klaus walked me to our seats and I sat with his arm around me and my head on his shoulder, my sister held my left hand and my brother held my right hand.  I couldn’t have gotten through the service without them.  My sister inlaw read a quote from the book of Jeremiah and my mother inlaw read the responsorial psalm.  The priest included our first son Max in the prayers which meant a lot to me (little Max wasn’t baptised and I thought it might cause problems).  For the reflection, we’d created a DVD of our favourite photos and used photos of the pages of the memory book my midwife had scrapbooked to “tell” his story.  The whole thing was set to “Real Love” by John Lennon.  It was very beautiful and left everyone reaching for the tissues.

When the service ended, the priest closed the curtains around my little boy and it was time to go.  I didn’t get up, I just kept thinking that after I left the chapel our little boy would be gone forever.  My family got me on my feet and lead me outside.  I held onto Klaus and cried.  As everyone filed outside, the funeral attendants handed me two white balloons, each bearing our little boys’ names.  We held them for a moment and then let them go.  I didn’t watch them fly away but my father told me later that he watched them until he couldn’t see them anymore and that they soared so very high.

We had arranged for afternoon tea at the cemetery’s cafe (the cemetery is massive — it’s the biggest necropolis in the southern hemisphere), and had twice as many people there than we’d catered for (most of my department from work were there, as were a bunch of people my husband use to work with) but the cafe was so ridiculously generous with their servings that there were six boxes of cakes and sandwiches left over. As everyone was leaving, that same bloody co-worker gave me a hug and asked for a photo of Nicholas.  I pulled back and told her that I didn’t have any and she said she could get one from me later.  I really feel she’s gone too far now and is being very obsessive.  When my husband said he was going to give the reflection DVD to my inlaws, it got my back up because it was made for his funeral — not for my inlaws to show their neighbours, etc.  My baby is not a curiosity or gossip fodder and I have an overwhelming need to protect his memory.  So there’s no way I’m going to give her a photo of our little boy.

Everyone left as the cafe closed and our families came back to our house for another cup of tea.  At one point I went outside to stand on the front path to get some fresh air.  Klaus appeared beside me and gave me a big hug.  It had been threatening to rain all day, but the sun kept poking through — at that moment there were a lot of dark clouds in the sky above us and to the east but the sun was beaming in almost perfect blue sky to the west.  And there, directly above the cemetery (we live a couple of blocks away from it), were two of the most vibrant and perfect rainbows I’ve ever seen.  :)

We met with the funeral director on Thursday and again on Friday to make the arrangements for Nicholas’ funeral.  Thursday didn’t go too well (too many tears) but I was able to think more clearly and make some decisions on Friday.  After that, we went to the Births, Deaths and Marriages office to submit the forms for Nicholas’ birth certificate.  Our employer (we work for the same organisation) has requested a copy of the certificate in order to pay paternity leave to my husband (paying him at all is something they have only managed to do once since he started that job at the beginning of February; got bills much?) but BDM have kindly informed us that they are currently taking six weeks to process new birth registrations.  This means that we will most likely have Nicholas’ death certificate before we get his birth certificate.

Speaking of Klaus’ work, he’s been there for four weeks.  He had a call yesterday to say that they had done a collection for flowers but they’ve collected too much money to send flowers and would we prefer it if they bought us a star or donated the money to charity (we’re thinking of giving it to Bonnie Babes).  At the same time, my colleagues of three years (the ones that called me every day of the first week of my leave to ask for help), haven’t done a thing.  I am completely floored on both accounts.

Shortly after arriving home, we had a call from the funeral director.  The hospital had contacted her to let her know that they are ready to release my little Nicholas which means the postmortem has been completed.  I don’t know how I feel about that (my poor darling little boy) but at least it means we now have a date for the funeral.  Next Thursday, 2pm.  I just need to make the order of service and pick some photos for a montage.  Everything else, including the catering for the wake, has been arranged.

I have to organise my postpartum check up for some time around the 8 April.  We’re not expecting any reports etc to be ready from the PM for 10-12 weeks so our “debrief” appointment at the hospital won’t be until May some time but I’m really hoping we can have that appointment before I go back to work.  Until then, the only thing left to do is lose weight.  I went into hospital weighing about 87kg (22kg gain, ouch).  This morning I weigh 78.8kg.  I have the new Wii Fit Plus to play with but so far can’t be bothered.  I did put away all of my maternity clothes a couple of days ago (Klaus use to call them my Nudgie Smugglers*) and I’ve pulled out the suitcase full of fat clothes from the back of the wardrobe so that I actually have something to wear other than PJs.  Most of my fat clothes don’t fit; they’re too big in the butt/thighs and too tight in the waist but I did manage to find a skirt and a pair of three-quarter cargo pants.  Right now I have nothing to wear to the funeral which is upsetting me a lot.  I really don’t want to have to wear maternity clothes because they make me look pregnant.  And I swear, if Klaus offers me that bloody Cornetto from the freezer just one more time…

So aside from all of that, I’m doing a smashing job at reversing my sleep patterns (which would work fine except the nights are long and very lonely) and I’m just trying to remember to keep breathing.  I tried to explain to Klaus that I really need to make my life better, to live every day in such a way so that every single day counts, because Nicholas didn’t have that opportunity and therefore I owe it to him.  I don’t know that he understood what I meant, but I need to keep thinking that way so I don’t fall into the void.  Falling would be too easy.

* Play on words – Nudge + Budgie Smugglers

Before I left the hospital on Sunday, Klaus made arrangements to take me back on Tuesday so I could have a last cuddle and goodbye. We met the social worker in the hospital foyer and she took us up to the little viewing room that has been beautifully decorated and is just like a nursery in someone’s home. Our darling Nicholas was wrapped up snuggly, laying in the bassinet in the middle of the room. He looked so peaceful and it broke my heart all over again. I wanted to rush to him and beg him to please wake up; that it wasn’t too late and we could all go home right now and I promise I would be such a good mum if only he would just wake up.

The social worker said that she had taken the liberty of already making hand and feet impressions into clay and that the clay would be sent to the art department of the local university for firing in their kiln. She further explained that it was something done for the hospital because the man responsible for running the kilns had also lost a baby and he did it to help other families in the same situation. How on earth can we possibly repay all of this kindness??? She made sure we were ok to do what we needed to do and left us then to do it.

After initial cuddles and cooing, and a few more tears we set about to do the things we hadn’t already done. There was a very large hard covered book on the table in the viewing room, and it was filled with letters, prayers and memories dedicated to so many babies that were lost over the years. I had seen it during my admission and wanted to add my own story to it but I just couldn’t find the words and really didn’t want to waste my limited time on that when I could be using the time to cuddle Nicholas. At home on Monday night I sat down at our dining table and wrote two letters; one for each of my little lost boys. I’d brought some glue to the hospital with me and used it to add my letters to the memory book.

I wanted to keep the outfit Nicholas wore in hospital but I hadn’t thought to bring another outfit for him to wear after that. I didn’t want to strip him naked and leave him there, and although the hospital offered me a beautiful smocked gown to dress him in, it just didn’t feel right. I’d left him on Sunday in his hospital outfit and on Monday, we went out and bought an identical romper (love those little hippos and giraffes). We carefully removed his old romper and gently redressed him in his clean new romper. It was a very slow and difficult process but we got through it without any problems.

Nicholas was born with beautiful light brown hair that glowed golden brown in the morning sun. It was almost an inch long in one area at the back of his head and we were able to tease a lock of it together, tied a piece of blue cotton around it then we clipped it away with a small pair of scissors I’d brought with me. With his precious lock stowed carefully in a little envelope, we set about making ink prints of his hands and feet. It was right at this moment that midwife Kate arrived bearing more hugs and more sweet words of encouragement and hope. She commended me on “labouring Nicholas beautifully” and said that it was the way in which I had birthed him that helped him to live for so long. I tried to tell her that I didn’t do anything, I was just there. She disagreed and said I’d been very controlled and that the birth, being flexed breech, was very difficult and that these little babies are usually born with bruises etc. Our little Nicholas didn’t have a single mark on him.

Although Kate hadn’t been expecting us, she still gave us over an hour of her morning to help us make lots and lots of hand and feet prints on the white card I’d brought from home. Our little boy had the biggest hands and feet! She cooed and soothed the entire time, then lovingly washed the ink from his skin. I was so glad to have seen her again and I showed her the pages I had added to the memory book she’d made. When she gave it to me on Friday morning, she’d said that she had made the first few pages for me but that she had intentionally left some pages blank for me to work on. Late on Monday evening, I had scrapbooked the pages reserved for his cot card, wrist band and baptismal remembrance. She loved it.

Kate removed Nicholas’ cord clamp along with a tiny piece of the cord and showed me how to dry it out so I could add it to the memory book. She had even included an organza bag for it in the memory book. We switched the spare wrist band I’d taken away with me, with the one that he had worn up to that point and carefully wrapped him back up in his blankets. Kate left us at that point and we sat together on the sofa with Nicholas in my arms. I held him close and told him how much I love him and kissed his creamy forehead and the bridge of his nose over and over. I delayed leaving for as long as possible but everything must come to an end. Klaus paged the social worker to let her know that it was time for us to go and she returned to see us off and to move my little Nudgie to the mortuary. We stood next to the bassinet and talked about the arrangements to follow and I continued to steal kisses and tummy rubs and gently squeezed his little piggies until there was nothing left to say or do except walk away.

I had such a nice day at home on Wednesday, making ice-cream, cleaning the house and all the while chatting happily away to Nudge. Shortly before the husband was due home, I had a quick shower, straightened my hair, put on a little make up and a clean dress in an effort of doing my very best impersonation of a 1950s housewife. He loves that stuff because usually the exact opposite is his reality!! We enjoyed a nice dinner and a few hours together on the couch in front of the telly before going to bed.

The husband woke me at 1am because I had been whimpering in my sleep. I quickly realised that I was having contractions but it really just felt the same as the Braxton Hicks I’ve been having for the last six weeks so I tried to dismiss it. He had started timing the contractions and thought they were about twenty minutes apart. It was clear that me laying there whimpering wasn’t going to help him get back to sleep so I decided to get up and walk about the house for a while.

By 2am I thought it was time to start writing down the contraction timings (2.15, 2.20, 2.25, 2.30, 2.37, 2.45, 2.55, 3.01, 3.05am) and by 3am I thought it might be a good idea to contact the birthing unit and let them know that I was probably in early labour but mostly just in denial. Given the anhydramnios and the birth defect as well as the distance we need to travel to get to the hospital, it was decided that I should go in sooner rather than later. I updated Klaus and announced that I was just going to take a bath and shave my legs, but Klaus wouldn’t let me because I’d gotten a little bit stuck in the tub last time and he didn’t want a disaster on his hands if it happened again! I took a quick shower and didn’t bother with my legs (too hard), threw on a dress and checked the contents of my hospital bag. Klaus was turning off lights and carrying things to the front door when I decided I’d just unpack the dishwasher – the look of disbelief on his face was hilarious but I did it anyway.

As he locked the front door, I stood on the foot path and looked up at the night sky. There was a gentle breeze; not warm but not cool either, and the sky was very clear except for the all of the stars.

There was no traffic on the express way and we arrived at the hospital at 4am. After sorting out some initial paperwork, the midwife settled me into my delivery suite and after a few more contractions she did a quick examination. I was only at 1cm. Bugger. The obstetrician popped in and did a quick ultrasound to check that the baby was still breech (he was flexed breech). We discussed going home again but with the hellish commuter traffic that blocks both directions of the express way between the hospital and home, we decided it would be better to stay at the hospital. While they prepared a room for me in the antenatal ward, the midwife organised for some panadeine forte and temazapan so I could relax and get a little sleep between contractions. It was shortly after 7am and I decided it was a reasonable enough hour to wake my sister and let her know that things were happening, though very slowly.

The shift changed at 7.30am and my new midwife Tessa introduced herself to us. We discussed the birth plan and my desire to avoid an epidural if possible, and showed me how to use the birthing ball without falling off it! The contractions had been a little sluggish and were really just more of a nuisance than anything else. I decided sleep wasn’t going to happen, so I got up and started walking the length of the suite and back again, over and over.

My beautiful, wonderful outpatient midwife Kate (seriously, this woman is the Mary-Effing-Poppins of Midwifery) arrived and we had a chat. The obstetrician was consulted and it was decided that rupturing the membranes wouldn’t make any difference because there was no fluid and the baby was still breech. It was decided that they would help things along with a little prostaglandin gel, so Kate prepared the gel while Tessa checked me again. It turned out I was already close to 4cm, my cervix was thinning and she could feel the baby’s bottom. The prostaglandin went back in the cupboard, they cancelled my bed in the antenatal ward and predicted that we’d have a baby in our arms shortly after lunch. That’s where everything slowed right down. The contractions were very irregular and often quite mild. My belly bump was still high up under my boobs and I did my best to stay upright and walk-walk-walk-walk the length of that delivery suite to coax him down onto my cervix but he just didn’t seem to want to budge. My feet were a little swollen and tired so I did sit down a couple of times but eventually I moved to the birthing ball between Amanda and Klaus, and we just talked crap while I rolled and swayed on the ball.

Tessa came back to examine me again at 3pm and found that I hadn’t made any progress at all. She popped a canula into the back of my hand, gave me two panadeine forte to top up the earlier dose and started me on 3ml of Syntocinon. Klaus’ parents arrived at the hospital and he went down stairs to talk to them. The Syntocinon was increased to 6ml at 3.30pm and by this time my body was really making some decent contractions. The birthing ball was fantastic and I swayed and rolled against each contraction. The Syntocinon was increased again to 12ml at 4pm and Klaus came back into the suite at 4.15pm and asked if it was ok if his mum popped in to say hello but the labour had gone from virtually non-existence to DEFCON2 in the short time he was away. His mum realised from the noise that it wasn’t a good idea. :/

My memories of this time onwards are very hazy in parts and I’ve only been able to piece together the following with a lot of help from Klaus and by using our massive collection of photos to create a fairly accurate account of what happened.

From this point on, I remember each contraction as being a bit fuzzy to start with (probably because of the panadeine forte), gradually increasing to regular painful-ness then a new sensation of pressure appeared which had me almost screaming (the actual screaming didn’t really happen for ten more minutes). I was still on the birthing ball, rolling with each contraction then leaning right back as the insane pressure part of the contraction occurred. Klaus and Amanda had been holding my hands and rubbing my back during this part, though I am sure they were doing a lot more too that I wasn’t aware of. I know Amanda was also updating and coordinating family members by phone and providing regular sips of water as well.

Kate and Tessa came back at 4.30pm and between gritted teeth I told Klaus and Amanda not to let them touch the machine! Everyone laughed and I remember wondering why they thought it was funny – I was serious!! Klaus tells me that, at this point he asked Kate if we could get me something for the pain and Kate said I would tell them when I needed pain relief. I wasn’t sure if I needed pain relief yet; I was actually waiting for the contractions to get worse! He explained his background as a pallative care nurse and said that he didn’t like to see anyone in pain, and Kate said it was ok, that this pain was good pain and for him not to worry. Kate suggested that Klaus move to sit directly in front of me and I straddled his knees with mine, and pressed against his knees with each contraction. That counter pressure was great but I had started to tremble a lot after each contraction.

Tessa and Kate said they would examine me again at 6.30pm but I was adamant that they should check me again right away because I felt things were much further along. I left the birthing ball and moved to the bed, but the contractions were right on top of each other so Tessa turned down the Syntocinon to 6ml. She examined me again and said she wasn’t sure. She asked me if it was ok if she consulted with the obstetrician and explained that she doesn’t normally do this but she wanted to get it right. Klaus thinks she was concerned about something but that’s just reading between the lines.

I rolled onto my right side and clung to the edge of the bed and my husband who had positioned himself to keep me from falling. With each contraction, he hugged me tight – I clearly remember feeling as though the ceiling was falling down on us and he was protecting my body with his. The contractions were huge and right towards the back of each contraction was this excruciating pressure that made me scream and terrify my poor sister and husband.

The senior obstetrician arrived but I’d had my eyes closed for some time now and was only aware that there was a new male voice in the room. Apparently I barked “Why is (brother inlaw) in here??”, much to the amusement of everyone else. The obstetrician introduced himself and examined me. With the next contraction, I really really wanted to push and up to this point no one had said I could. I really felt I wasn’t doing anything, I was just “there”, secondary to the contractions and everything else in the room. I knew from my readings into breech deliveries that it’s best to have an epidural so you don’t feel those early urges to push because pushing a breech baby too soon can hurt the baby and/or yourself. I didn’t want the epidural so I knew I needed to be careful and I’d resisted the strong urges to push since the last few contractions on the birthing ball but I really really felt I had to push now.

The obstetrician told the midwives that I was 8-10cm but there was one side of the cervix hadn’t completedly thinned out. I asked if I could push and he said I could push if I wanted to, but the midwives ushered the obstetrician out the door and Kate said she would tell me when to push because the contractions were doing such a good job of moving the baby down and out, that I didn’t actually need to push. Although I was told all of this I really don’t remember it and was still wondering when I should push! At this point someone, probably Tessa, took away the Syntocinon drip and turned on the nitrous oxide (90% gas, 10% oxygen) and Klaus held the hose to my mouth and gave me “breath in, breath out!” instructions. I continued to do a fair bit of screaming during those contractions and made useful statements such as “he’s coming!”, “help me!” and “do something!”. My poor sister will probably need years of intensive therapy to get through the post traumatic stress disorder of this part of the labour but she was brilliant, staying right by my side, holding my hand and administering sips of water between contractions. By now it was almost 5pm and everything really went very fast. The contractions were very intense, as was the pressure of the baby moving down the birth canal.

Klaus kept right on holding me and telling me to breath in and out. My eyes were still firmly shut but I remember being in the dark and just spinning in an anti-clockwise direction. Kate got right into my ear and told me that Nicholas’ gorgeous little butt was out and she moved my hand to touch him. I still hadn’t pushed and was screaming against the intense urge to push with each contraction. Klaus kept right on with the gas and the breathing instructions. I was breathing gas between the contractions as well now and went into a really dark, spinning place. I remember Kate saying that she needed to clean up some poo then she quickly added that it was baby poo, not my poo!! (TMI?!?!) Kate and Tessa rolled me onto my back but in my head I was just spinning around and around and around and around in that total blackness for what seemed like a thousand years – the only sound was Klaus’ voice. They were trying to take the gas away from me but I wouldn’t let it go. Kate flipped the gas off so I was getting oxygen only and I accusingly told them that I knew what they were doing!! Suddenly Kate’s voice boomed loud from somewhere in that darkness and brought me back into the room; “Tamara, it’s time to meet Nicholas”. Her voice was urgent and authoritive. Everything was happening so quickly and I was really punch-drunk.

Tessa explained later on that they could see Nicholas’ chest and he was trying to breathe but I hadn’t delivered his shoulders yet. Kate tried to get me to focus and push – I was aware of someone pushing on my stomach to help him out. His shoulders and head came out, Kate cleaned his face and put him straight onto my stomach. It was 5.17pm on Thursday 25th February 2010.

I was still very much out of it and unfortunately I don’t remember this first hand but I have now seen the photos and video, and will treasure them forever. Beautiful little Nicholas was the most greyish-purple baby I’ve ever seen. His APGAR score at 1 minute was 2, and at 5 minutes it was 3. (The same chart recorded stage 1 of my labour as being 7+hrs and stage 2 as 22 minutes!). I held our adorable little boy on my belly to keep him warm while the midwives clamped his cord. Tessa handed me the scissors and held his cord for me to cut. A female registrar obstetrician arrived then to deliver the placenta. They cleaned me up and said I had a small tear but that it didn’t require stitching. Kate placed an oxygen tube to blow across Nicholas’ face and I just kept on holding him and trying to keep my head in the moment (I really was still very out of it). Everyone knew that time was short so they cleaned me up quickly, Klaus and Tessa pulled me up the bed and Kate covered me with a fresh sheet. Kate told Klaus to unbutton his shirt and they moved Nicholas onto his chest and found a little hat to keep his head warm. His colour gradually improved until he was almost pink, though his hands and feet were still greyish-purple. Nicholas had wonderful cuddles on daddy’s chest, he cried and grimaced and my brave beautiful little boy did his very best to breathe.

Kate and Tessa went back and forth a few times, and in the next couple of minutes two pediatricians arrived to assess little Nicholas. They listened to his heart and to his breathing but it was obvious that he had such a small amount of lung development that there was nothing they could do to help him. They offered us some oral morphine and some glucose to help keep him comfortable but Klaus and I decided we would try the glucose syrup first because we were worried that the morphine might shorten his time with us. Kate returned with a syringe filled with glucose syrup and gave it to me. I squirted a few mls of the clear liquid onto the side of his tongue and his little face screwed up in response.

We think at this point Amanda must have gone out to get everyone because a moment later the room filled with our family. Nicholas continued to squawk while daddy gave him warm cuddles on his chest. We spent the next little while getting to know our little boy, exploring his beautiful hands and feet, kissing his face and sharing lovely cuddles. Everyone had a little hold and before much longer the priest arrived to conduct the baptism. I held Nicholas in my arms while the priest performed the service and my brother Adam and his wife Jennifer became Nicholas’ godparents.

My dad and his partner arrived, but knowing the end was growing nearer, I just couldn’t let Nicholas out of my arms to let my dad hold him. Dad said he understood.

Nicholas didn’t feel as warm inside the blanket so I tucked him inside my gown and held him against my chest to keep him warm. Gradually our beautiful little boy became quieter and sleepier. His little eyes grew heavy and each breath became more difficult. I rubbed his body and held him close, fighting back the huge wall of tears that I knew would come very soon. Klaus picked up a stethoscope from a counter and listened to Nicholas’ heart. It was slow, perhaps 50bpm. He moved the stethoscope to my ears and held the other end to our baby’s chest but I couldn’t hear anything. He listened again himself and said he couldn’t hear the heart beat now at all. Our baby had passed. It was 7.20pm.

Eventually our family left us to be alone with Nicholas and I was at last able to get up, pee, shower, dress, etc as up until then I’d been wearing only the hospital gown and was covered by just a sheet. While I sorted myself out, Kate filled the baby’s bath and arranged the various things we needed to clean up Nicholas. He was weighed (2.51kg or 5lbs 9oz) and measured (45cm). Klaus and I gently rubbed his beautiful soft skin with J&J Top to Toe (the scent that will forever remind me of our baby), then lovingly gave him his first and only bath. The warm water made his body feel so lovely in my arms and I will treasure the memory of him feeling so warm. We dried and dressed him in his blue romper (covered in hippos and giraffes) then wrapped him in the beautiful blue cotton blanket that his lovely HAPL aunties gave him.

Kate eventually left to go home at around 10pm (!!!) and Rowena took us to my private room in the antenatal ward (far away from the maternity ward with all the mums and their crying babies).

The following morning Kate visited and brought with her a hospital memory book for Nicholas. She had taken it home the night before and scrapbooked it into the most precious and beautiful keepsake. I will forever be so grateful for Kate. She gave me such strength and support to continue with the pregnancy, as well as during the labour and in the days following Nicholas’ birth. I wish I could do something for her in return.

The geneticist came to see Nicholas on Friday morning. He was very sweet to Nicholas, gently cooing to him as he did the external examination. One thing that we had noticed while Nicholas was still alive, is that he seemed to have one blue eye and one brown eye! The geneticist had a little look and felt that actually both his eyes were blue but that there was a definite area in the iris where the pigmentation was brown. The geneticist went away to discuss this with his colleagues and eventually returned to tell me that he was thinking that it might be a retinal coloboma. The thing with retinal colobomas is that they are often associated with the same genes that touch on renal development. We might actually get some answers after all.

The rest of the day was quickly consumed by obstetrician and midwife visits, and a lengthy visit from the social worker. There had been some talk of me going home on Saturday morning but by 5pm on Friday I felt that I hadn’t had a single minute alone to be with my baby and a little meltdown followed. Klaus spoke to the midwives and it was decided that I should stay a while longer.

I slept barely, spending most of the time holding Nicholas, exploring his feet and hands, kissing his delicious neck and committing the perfection of every part of him to memory. Kate had mentioned that it would be ok for me to go for a walk outside with Nicholas and that provided I kept him wrapped and walked with purpose no one would look twice. We showered and dressed, wrapped Nicholas in his lovely soft blanket and went for a walk to the fairy garden at the Children’s Hospital. It was quiet and peaceful, and just so lovely to sit together as a little family with our precious baby. I’ll forever be so grateful to Kate for telling us about the fairy garden; it was a very special time for us.

By Sunday morning I was really really dreading having to leave the hospital – I still needed more cuddles with Nicholas but I knew we couldn’t do this forever, no matter how much I wanted it. We walked outside and sat on a bench, sipping hot tea and watching the morning unfold around us. There were still a few things I wanted to do but I didn’t have the means to do them and the midwives rostered to care for me over the weekend were very different to the ones that worked during the week. I didn’t feel that I could ask for their help – in fact, asking one of them for my breakfast when the food services lady had forgotten about me only created massive problems which is why we were sitting out in the sun with a cafe bought breakfast. I wanted to cut a lock of Nicholas’ hair but I didn’t have any scissors. I wanted to take hand and feet prints but I didn’t have any white card (the hospital uses blue card for that which won’t scan very well). It probably doesn’t sound like much but it was a very big deal to me. Klaus spoke to the right people and arranged for me to go back to the hospital on Tuesday to do these things and we sadly repacked my hospital bag and prepared to leave.

I hated leaving him there – the midwives wouldn’t let me place him in the box they use for angel babies; I was only allowed to put him in the cot and go. It hurt a lot thinking that each kiss might be the last unless I could steal just one more. I patted his tummy and rubbed his feet and kissed his forehead again and again but then it was time to leave. I cried the entire way to the car park and then the whole way to my sister’s house. We’d decided to stop there first to get a copy of the photos she had taken. I’m so glad we did because my wonderful amazing sister recorded lots of video of our beautiful little boy as he lay snuggled and warm on his daddy’s chest. Nicholas cried and kicked and looked up at us both. Yes, our baby died but our baby also LIVED and that is more than we’ve ever had before. We are both so heart broken right now but watching the video of him squawking and squirming is so uplifting and does so much to take away the pain of what followed. It’s going to be a long time before either of us are “ok” but we’ll get there eventually.