I wont bother editing. I know this is all over the place but, so are my thoughts. Just bear with me.
He would be 24 days old. These last few weeks have felt like years.
Grief is very individual, I knew that, but living it is something so different.
At first I was just numb, I could speak about what happened and barely tear up. Like I was no more than an observer in someone else's tragic life.
The first shopping trip to our local supermarket, was ok. Nobody we knew saw us.
Second trip, they did.
I feel like I am drowning in sadness sometimes, other times I feel anger, and other times I just need to look at photos over and over and over.
It took about two weeks after his death to process it, to the point where the numbness was going away and every mention or sign of him would set me off. Today I am in-between deep aching sadness and frustration. I keep having these horrendous dreams where A would come back to life... they are so cruel. I wake up crying most mornings now. I didn't dream for a while at first, and the first one I did have A came back to life and I took him home. I am so angry that not only did I have that dream, but it was what seemed to wake me from the numbness so that I began to feel it all.
Our local fruit and veg family, a family we have essentially become a part of due to how long we have known them. They were so broken, they didn't know what to say, nobody knows what to say. As soon as I looked at them, I started tearing up so I got a big hug.
Then it was the pharmacy, I hadn't even told anyone so I assume someone's big mouth not only announced MY news of my baby's birth, but death as well. One of the ladies (again, we know them well, we have been coming to this particular place for 9 years now) just put her hand on mine, she asked if I was ok. I've began just nodding, or being honest and saying no. I just couldn't look in her eyes.
Our pharmacist could barely look me in the eyes, he could barely speak. The sadness was written all over his face. He's a father too, so I hope he went home and held his kids tight....
It was such an awkward experience, I absolutely hate crying in front of people.
At school pick up, the first time I went (first day back, I wasn't going to make my partner face everything alone) one of our mum friends had the biggest smile on her face as she walked up to me, only for her face to fall and say no, no?, no! over and over, before giving me a long hug. She said she was expecting to see a baby, some good news, of course there was anything but. I was pregnant and still waiting for labour the last time we spoke. We never got to bring our baby home, as a baby. She's heartbroken, only a couple of weeks ago she announced her pregnancy. I showed her a photo of A, my beautiful little baby and she said he was beautiful. I am so eternally grateful for heartfelt, without these photos, I would only have either a couple of birth ones or ones where he was covered in tubes and wires, or the ones when his body was just an empty shell.
I prefer to show the nice ones, even though I barely remember him like that. She loved his name too. It feels kind of wrong to say his name, I wish we had told people it before birth so that it doesn't feel like I'm talking about someone else's child.
I never truly felt like his mum, I never got to do the proper mum things like change his nappy or feed him throughout the night. I never got to dress him until he was dead, the most I did do was put his little hat on. So much was stolen from us.
My partner later mentioned seeing two other mums sitting where we usually did, ones we talk to quite often too, look like they'd been punched in the stomach when the other mum approached us and our reaction. They knew, without needing to be told. It will get around the school pretty soon I'm sure.
My 5yo's teacher came across the school yard to tell us she was told what happened, and she was utterly devastated. She was pretty excited for us, and knew bub had a heart defect but like us, expected the first surgery to be months away, not that he wouldn't even live to see the first. She got flowers the next day and sent them home with R. I don't care what the books say, live flowers are nice to receive as a grieving mum, even if they do die. The vivid colours, and having something living to take care of is nice.
Then yesterday, another mum, one I haven't spoken to but I've seen her around school, town and even the hospital, always has the brightest happiest smile. She knew I was pregnant, and I saw her eyes go straight to my belly as she passed us, she processed it for a second and walked away really fast. It was obvious she either realised I don't have a baby anymore or that he's sick still in hospital. You can see the shock, the sadness.
Then at the shops, another lady we saw often had the biggest smile on her face and looked at my belly. Her face fell when I shook my head. She started to tear up and wanted to give me a hug but I shut down. I wanted a hug, but couldn't bring myself to walk to her. She felt so bad, but all I could do was choke out the words 'it's ok'. Another milestone I guess. Can't even talk about my baby, it just hurts too much.
I can't imagine what it must be like so see someone pregnant, and suddenly not; with no baby.
From my perspective, it is not only alienating, but isolating. However, I prefer that than other's doing things they think will help, not knowing that I only see it as them making themselves feel better. I don't need constant visits, or people asking how I am all the time, it's it obvious? My baby died, I will never be ok with that, I will never be ok again.
Counselling is something I have already sought, I have spoken with SANDS. Saying I need counselling to my partner 'out of concern for me due to my history of depression' downright sucks. Do people not realise one of the first things the social worker did when A died was get me folder with information for bereavement, things in general and specific to SA. How to speak to the kids, how to take care of myself, what counselling is available and what to expect when I am ceasing lactation. Nobody is alone with this, and to assume I don't have support I need and want goes to show how much this topic isn't spoken about....
At first, I took everything I accepted all help, I ate food that was brought to me even though I didn't actually want to eat. I even sat down and looked through the bereavement folder after walking away from the hospital that next morning. I sat on my bed and read through how best to talk to the kids about death. I know at least in my grief, I did the right thing and told the kids the right way.
I knew to be honest, and straight to the point.
I sat the kids on the bed, the one I spent the night in with A. The kids tried to look in the cold cot, but we redirected their attention. They had no idea we'd just taken their dead brother to the mortuary just before. I said to them, you know how the baby was sick, that's why we are here. Yesterday he got sicker and his heart stopped working. He died.
My older two immediately broke down already knowing something was up because I could see the dread on their faces. The younger two didn't quite get it, they are too young. My daughter was so upset she could barely breathe.
They are ok now, I see the sadness but we talk about A a lot, and we talk about the things he did, I show them photos and video. We made sure to let them know to talk about their feelings if they want to, and to not hide how sad they are. Not to hold everything in. Our daughter, that first night, broke down again but at first it seemed like she was holding it in. My partner gave her a hug and told her to let it all out, that it is ok to cry so cry she did. She didn't want to be held, she curled up in a ball and cried and eventually fell asleep. I wanted so badly to cuddle her, but I knew I had to let her grieve in her own way. I couldn't handle being touched by others. I got so frustrated with my mum hugging me eventually, I couldn't handle hugging my in-laws when I saw them. I still don't want to be touched by anyone but my partner and kids, and even then, I struggle. I should be cuddling my baby.
Every night since A died, I have slept with his bunny, wrapped in the blanket my mum took when he was still alive knowing I needed something of his to sleep that second night. His smell is virtually gone, and that sucks, but having something of his, is as close to having him with me as I can get. His box of ashes used to be beside the bed, we had him with us when we had a shot of Icelandic vodka a few days after arriving home, having made the promise during pregnancy that we would; when we brought him home. Now he sits on a shelf, surrounded by his foot and hand prints, the letters we were sent from the hospital since coming home. I had the battery operated candles I had on during labour around him. I had more new ones delivered to day, so I've taken the original ones away and will put them somewhere special.
I have the end of the cord that I clamped after cutting him free, it wasn't needed but I still did it. I have been waiting for it to dry like I would have on his belly (had it been there, as his never fell off, he was cremated with his cord tie) it's got some mould starting because it has been wet and cold here the last few days and I am devastated. I don't know how it will be now that has happened. I hope I can prevent it rotting... at the very least.
I am grieving, I am not going on antidepressants for a normal human emotion, I am processing things, I am writing, I am talking. It's not abnormal to want to distance myself right now. I don't want to see anyone, pretend I want guests or even go out for coffee with my best friend. I barely want to talk to people and acting like I SHOULD want to be surrounded by people isn't nice. I just don't. Respecting my space is what I need from people. I had a mum bring food, and that was very much appreciated. I had my mum visit, mostly because I was barely handling the kids because it all hit me the day or so before.
Babies flood my Facebook feed because of my line of work and interests, I used to have a pang of jealousy before I got pregnant, then when I would see happy healthy babies I'd be excited to meet my own, and now it's just feels like a constant kick in the guts. I see all these babies that were born in the weeks before mine, and it kills me. The unfairness. I should have a baby to be snuggling in bed, I shouldn't be dealing with postpartum recovery alone, I am supposed to have a baby, I'm meant to be happy, not grieving. I have avoided social media for long enough that my friends are beginning to notice, going by the message notifications I'm getting but ignoring....
I am angry, I have moments of rage. Why MY baby. This kind of shit isn't meant to happen to people, but it does. Why did they get all the echos so badly wrong? How did they miss the atrial septal defect Why wasn't I warned properly that my baby might die straight after birth when I am sure they knew. I remember a cardiologist saying babies with this condition, without surgery don't live more than a few days, I had no idea at the time he was hinting to my baby's condition. I didn't hear the official diagnosis of Heterotaxy until we had been in Melbourne a few days. I expected my baby to have surgery sooner. Although I know now that this would have happened anyway, the surgery that was planned would not have removed the factor that ultimately took his life.
Why didn't they tell me that although surgery happens, they still don't usually survive. Even though I did research Right Atrial Isomerism at 34ish weeks, it didn't mean I could recall that information. I wish they didn't go around the facts when they sat with me and discussed our options - my partner hadn't even left Adelaide so the decision was on me. My partner trusts me 100% with the health and wellbeing of our children, I know that he would never try to decide, he doesn't have the medical background that I do, and he knows I would always, even if it hurts me, make the right decision for our children. It didn't feel like a burden, and it doesn't now. But I do wish he was with me on that day.
I remember mixing up some of the statistics, and relaying them in a way that we both had more hope than we should have. I still told him he HAD to come sooner than he planned, I can't imagine what I'd be feeling if they weren't in Melbourne that day and I had to say goodbye to my baby alone, never showing his siblings his little face and giving them the chance to touch his little head. I hate the thought that my partner may have only seen his baby boy for a day, never to see him alive again after we left for Melbourne. I am glad A waited, I am glad we got to say goodbye together.
I was going to go through with the surgery if he lived, I wanted my baby to have whatever help was available and if then he didn't live, then he was given every chance. I wasn't going to 'give up' and choose palliative care without a good reason. My baby was stable, happy, receiving milk through his NG and getting regular cuddles. When bub was hypoxic, it felt like he was already dead. He started to go cold from extremely low oxygen levels, his heart was beating above 160bpm, at times as high as the 180sm, the oxygen pumping so fast at 106% with absolutely no effect. The drugs they were giving him, again having no effect. I knew the moment I walked into his room that day, seeing staff everywhere, hearing noises and seeing the sats. I knew my baby was leaving this earth, and as much as I begged him t keep fighting, his little heart was just not working properly. Those pulmonary veins were just too obstructed.
If I knew sooner, that the time I had with him was more precious than I imagined. I would have embraced every second, I would never have left for lunch that day when he began to crash in front of my eyes. I would have spent less time away from him, not that it was much and I truly needed to sleep. I did what I felt I needed to at the time, I thought I needed to care for myself because my baby would need me. The night before I cut our cuddles short because I didn't want to be walking across the park alone, I also needed to be out of those walls, to spend time with my family, having not left he hospital since arriving, except for getting the keys that day.
I knew he wasn't great that morning before I left for lunch. I was noticing he was needing more suctioning, putting the blame on him being moved for cuddles. I thought he would be ok. I was in a delusional place thinking there was no way my baby will die, he will get stabilised with this medication and I'll get another cuddle this afternoon.
I did, but not the way I expected. I didn't know that afternoon, I was going to be holding my baby as he left this earth, I didn't know that night I would be crying and cuddled up to the shell that was my baby's home.
Nobody knows what to say to me now. I feel ostracised.
It feels so wrong to be pregnant, to wait over 40 weeks and then suddenly not be with no baby to show for the 7.5 hours I laboured with him, the 5 days I spent at his bedside.
My body is changing, I am no longer making milk and my tummy is going. Once upon a time this 'snapping back' would have been a blessing, but now it's traumatic. My body is erasing his presence, his existence.
I am still sore from birth, from pregnancy yet it feels wrong. I don't feel like I had a baby so recently, it feels like it has been years. I have to remember I am still postpartum, and it has only been weeks. He wouldn't even be a month old, even with the births that were easier on my body I was still recovering. A's birth was so fast, and I didn't feel like I had a baby until the shock wore off. I feel it all now, and sometimes I am glad. Lochia is stopping, and that's painful emotionally.
Time is almost at a standstill, the hours drag by whereas I know if he was here these moments would be gone in the blink of an eye.
And to top it all off, I am flaring again. As if two hospital admissions during pregnancy wasn't bad enough, and now to deal with extreme physical pain along with my emotional pain.
Yesterday I tried to buy a new bra or two, now that I am no longer lactating, I am back to my pre-kids size. Something I literally have not been since I first got pregnant with my eldest. I walked around the shop, knowing now that I can actually get a cheap bra because I'm not so large to need them specially ordered or from a specific place. I got overwhelmed trying to look. It was just something I couldn't handle. Even looking for shirts. Just being there doing something differently to what I was supposed to be doing was too much. I was meant to be buying more maternity bras, loose shirts, comfy things to cuddle my baby wearing... instead I'm looking for a bra that will make me feel a little better about my new physical shape, and clothes that don't remind me constantly that my baby is gone. I had to leave the shops.
Things are going to take more time than I even dreamed. I know I need clothes, I lost a lot of weight during pregnancy and have next to nothing to wear, but I also hardly care.
I just want to lie in bed, do nothing and cry.
I miss my baby so much...
Wednesday, 25 July 2018
Friday, 13 July 2018
Baby A.N.C 2/7/18-7/2/18
My baby was born. He is no longer here, he passed away at 5 days old.
I will write everything as it happened, there will be things you may not want to read, especially the death of my baby boy.
It was not the journey I anticipated.
The birth was as good as it could get, but my baby was not well from the very beginning.
The last weeks of pregnancy I was asked a few times about induction, and I listened to my gut instinct to say no. At 39 weeks the consultant ran though the reasons but respected my decision to wait for labour and wait I did.
From 38 weeks I started experiencing prodromal labour, it was frustrating and uncomfortable, I kept worrying that I would not get signs of early labour and accidentally birth at home. My body knew what it needed to do though. I need to remember that.
At 40 weeks and 1 day, I noticed a couple of small, very small gushes. I assumed it was either a small leak or just usual end of pregnancy discharge so I ignored it and kept on with my day. We went for a long drive that night and I was once again dealing with prodromal labour, but I had a feeling that it was going to become something. Just something instinctual.
When we got home, I lied in bed and noticed a few more small leaks, but once again ignored them. I watched the movie Sunshine, every few nights I would watch a movie or a show to distract myself from the prodromal labour and eventually fall asleep. I was up and down what felt a million times to pee, more so than usual, which was really often anyway. At 1030pm that night, after the movie had finished I went to the toilet and noticed the leak was pink tinged. I smelled it and knew it was my waters. I knew my baby was going to be born very soon.
My partner went to bed around this time, I hesitated saying anything because I was in a bit of denial, but said 'heads up, I think my waters are leaking so I will just wait for some proper contractions' and we went to bed.
At 2am I noticed I was getting some waves, with a bit more kick to them than I had been having. They were similar enough to my last baby, where the pressure was down low instead of sharp pains across the lower part of my belly. I focused on these waves and noticed they were not regular but coming and seeming to get a little stronger at times. I got out of bed and peed again, noticing more pink fluid. I was uncomfortable enough that I went to lie down on the lounge for a bit. With more back and forth to the toilet. My bowels cleared, and then I knew, I was in early labour.
I noticed the contractions were getting stronger and at around 420am I decided to download a contraction app and time my contractions. I don't usually do that when in labour but I knew it would be helpful information for the midwife when I called.
I timed them from 0421 to 0437 and they were between 5 and 3 minutes apart, lasting between 30 and 50 seconds. So I decided to snuggle into bed next to my partner and wake him, I told him I was in labour but I didn't know when to call his mum who would come watch the kids. He decided to call straight away and it was a good thing he did.
He made a comment about getting what I mean about my waters, he said I smelled like kittens. That birthy smell.
While we waited for his mum, I got my bags ready and texted my student midwife and then called the women's assessment. I said to the midwife I was coming in, I was having contractions and felt they became proper labour around 2am when I woke up but I had suspected I was leaking fluid from about 10pm, and that baby had a cardiac condition so I wasn't going to wait for them to get stronger. She said since this was my 5th baby I knew what I was doing and that she would see me when I arrived.
My MIL arrived and we left almost straight away, the contractions were getting stronger, although not by much or any closer.
I didn't have many in the car on the way, being almost 5am it wasn't a long drive, we were there quite quickly. When we got to the hospital I had one contraction as I was getting out the car, and two more on the walk to women's assessment where I was taken in and put on the monitor. The contractions fizzled, I started to doubt it was labour until I got one good one every now and then.
I was on the monitor maybe 20 minutes before I was moved to my room. It was huge not the claustrophobic room I had been shown during my pregnancy, I felt pretty comfortable and my student was there waiting.
The midwife introduced herself and we found out she had the same name as my daughter, and that she was fine with me having bubs heartbeat checked every 15 minutes instead of constant monitoring, but she got the wireless ones anyway just in case there was a sign that meant CFM was a good idea, I was fine with that. We discussed what would happen when I needed to pus, I was surprised with the fact that there would not be just one or two extras, but 4, a paed, two other drs and a NICU nurse. I asked if they would wait behind the curtain until we needed them and that was fine. I would definitely let them know when I was feeling an urge to push so they would be ready and waiting.
We just chatted for a bit, I went through what early labour was like and that I was pretty sure I was leaking. I stood for a while and eventually got on the birth ball. Things were just so easy, I kept thinking how odd this labour was and that it just wasn't picking up like I expected.
Shift change happened an hour in, and I met my new midwife, she was just as lovely and used to work with the MGP and did homebirths so she was definitely the right kind of midwife for me. She was reassuring and kept telling me my body knew what it was doing for my baby's condition. Things I wasn't thinking myself, and it was definitely the kind of support I needed.
I watched the sun rise, and the OB came in and introduced himself, he basically said he was happy with my birth plan and wanted to know if I would be open to changing things if something happened and I just said of course I was, I was in hospital for my baby, and I would do what it took to make sure he arrived safely. I was still having such random contractions, I swear every 10 minutes I would get a good one and then they would go weaker again.
I lied in bed for a little while and then decided to get out and have a shower, I was having the occasional strong contraction that made me make a lot of noise.
I was crying at this point and cried harder when I was in the shower. I was starting to get very emotional and ended up bawling in the shower. I just had this overwhelming sense that something was not right. Baby was doing fine but I felt so strongly that he wouldn't be. I was in the shower for a while and the irregularity and lack of intensity of the contractions were bothering me a lot. They seemed to stop altogether for a while. I checked myself and when the midwife heard me say I had, she asked what I thought I was, my guess was about 8. The drs came in and were waiting, getting everything set up knowing I would surprise them with the speed of how fast I birth my babies. In hindsight I was complete. It was a few contractions where I started to doubt myself and checked again, I felt what I thought was a 2cm cervix and lost control, I said I didn't think I was 8 and that it was gong to be a long time. We sent the drs out. Little did I know at the time, I was actually poking my baby's mouth.
I had enough of the shower, thinking birth was a long way off I got back into bed, my back hurting s lot. My student midwife got me a heat pack and held it to my back while I lied there and tried to nap. I was so exhausted, I kept crying about how tired I was, the contractions never really got to a point where I felt things were moving along. I started to worry that I would end with a cesarean because bub would get distressed.
Then my waters went pop, very loudly and I didn't feel a gush but pushed ever so slightly and felt the water come out a little. The next contraction hurt a lot, I started to panic. The pressure was intense and between contractions I looked at my partner and said, I think I am pushing. he immediately sprung into action and started putting the blankets on the floor, surprising everyone in the room. I got down and immediately needed to push hard. I couldn't control it. I held onto my partner and panicked even more and it wasn't until I heard the midwife coach me into breathing that I managed to calm down. I pushed hard again and tried so hard to fight it, I felt bubs head move down. next push babys head came out, the urge didn't go so I kept pushing and he just slipped out into my hands. I heard a collective woah and then someone said he was tangled, but I said no, his cord was very short. He was also very small, it didn't seem real.
He didn't cry immediately, he made some noises but I wasn't happy with them so I rubbed his back and talked to him like I would normally do regardless of where I was. I remember looking up and seeing the paed in front of me and after a little while she asked to check his oxygen, I said yes and she jumped up and got the little monitor and stuck it on him and sat by me. I saw the levels were in the 60s and so I asked what she was looking for, she said 80s and asked if she could take him to NICU. I started to cry, because I felt like the moment I handed him over it was it. I said yes, my partner got the cord tie, I handed bub as best as I could with his short cord in my partners hands and I tied it on and then cut the cord, my midwife took photos for us.
As soon as he was free, I gave him a kiss and then handed him to the paed, and watched them all almost rush out of the room with my partner. It felt so sudden. It was just 20 minutes after birth that he was gone out of the room.
I focused next on the placenta, I waited nearly an hour but after talking with my midwife and sitting on the birth stool when the paed came back in, she asked me some questions and told me baby wasn't well so I decided to have the shot. My midwife was gentle, she talked the whole process with me and gently applied some traction while I pushed, it was surprising how much I needed to push! the placenta was absolutely tiny, I found out it weighed about 200g. I lost about 100ml of blood, which is next to nothing. As soon as I inspected the placenta and both my midwife and I were happy with it being intact she said she didn't see any tearing, just small grazing, I had no idea she was able to see tearing when the placenta came out, so I never needed to be touched. It was rather healing after my last experience. I got up, grabbed my clothes and had a very quick wash before walking to NICU where bubba was having an echo.
I don't remember how things went from here on, I just remember that bub was on CPAP and his colouring wasn't great. I got to have a hold and I remember my partner saying it wont be long and bub will be snuggled up in bed with me. I knew he was wrong. I knew bub wasn't ok. They did so many tests, I don't remember what. I did ask how big he was and he was a teeny 2.6kg, 47cm long. Very small for a 40+2 weeker. Definitely IUGR, I remember being angry they stopped the scans at 34 weeks and that would have been picked up. But I also felt very strongly that he was better off being born when he was.
After a while they swapped his CPAP to a tube under his nose, and I asked about feeding. The dr wasn't sure and wanted to observe his noises, he was convinced enough that feeding should be ok so I breastfed him. After a while my partner went home to the kids.
About 5pm the cardiologist came to tell me bub needed surgery, very soon and that they would transfer to Melbourne within the next 24 hours as soon as a bed was available. I had the nurse talk to my partner, i was in shock. Then i called my mum, I hadn't told her bub was born yet, and one of the first things i had to say was he wasn't well and we're going to Melbourne, and get her stuff organised because she would be coming with me.
The cardiologist or another dr, I don't remember said they would call at 6am to see if there was a bed. I stayed with him and had as many cuddles as I could. It felt like an eternity but it was only one night. I was back and forth feeding bub and bringing colostrum for the next 10 hours, unfortunately his blood gasses weren't good so when I came back for a feed after next to no sleep to find him back on CPAP. I still got a cuddle but I never got to feed him again.
I stayed with him from about 4am onwards, fighting sleep deprivation waiting for them to call and hear about the bed. they called at 6 and there was no bed, so I decided to go for a nap. I didn't get much so I was back again not long after. I got another cuddle, still fighting the desire to sleep, and my student came to visit before her shift began. my partner was on his way. he arrived around 8 I think.
When he arrived, I was cuddling bub, and then we decided to go get a coffee and have a toilet break. We went back to my room for a little while, around 10-10:30 I don't remember, only to get the cardio nurse come and say Melbourne rang and that they have a bed, they were flying him out at 12 and MedStar were there and they were about to intubate him. She was telling me they could get me a flight at 1, and gave me paperwork. It happened so fast. I went down and wanted a cuddle before they intubated him, I didn't want to see that. There was a rush of people, MedStar in their red uniforms and the isolette type cot they would transfer him in. It was then that it set in how sick my baby was. Everyone was telling me things and I barely remember what they said. I cuddled my baby, ever so quickly hovering over his bed before I had to leave for them to intubate.
We went back to my room and I called mum. I just cried with my partner and we waited for the nurse to come with the paperwork I needed to fly and the discharge papers.
As soon as I got them, we left for the airport, mum on her way and planning to meet us there. It was 1130 when I left the hospital.
We drove to the airport, and on the ramp going in mum pulled up beside us, perfect timing.
We went to check in, and then we waited at the gate for the flight which would leave just after 1. we didn't think to watch for the royal flying doctors who would fly bub out, we could have seen them through the window but we were trying to distract ourselves.
Saying goodbye to my partner when it was time to go was the hardest thing I have ever done.
The flight was fairly quick, only an hour and 20 minutes. When we landed we got a taxi and went straight to the royal Melbourne childrens hospital and when we got to the Butterfly ward we found bub had literally just arrived 5 minutes before we did, and the first thing I did was go over to him. it felt so surreal, I didn't like seeing the intubation tube but it was in his nose not his mouth like I was worried it would be.
Things are kind of a blur from here on, I stayed with him as much as I could and pumped as often as I was able. I started to get an awesome supply despite worrying about pumping antenatally.
We stayed in the new mothers room, I hardly ever left my baby. when he was 3 days old I broke down and cried behind the curtain and complained about not being able to do anything for my baby. it want long after that they let me have a cuddle, it was so scary with all the wires and tubes. but it felt so good to finally hold him.
Every time I held him I had an overwhelming sense of exhaustion wash over me, I tried so hard to stay awake. I held him for hours, only ever leaving to pump, toilet or eat, and sleep for about 2-3 hours.
I almost never left his side.
on Wednesday they did a CT, to see how his heart was. I was to find out what was going on after they had a good look and would talk to me the next day about what surgery will need to happen.
On Thursday I had the specialists all come and have a chat with me, mum by my side. And they told me everything. My baby didn't have a very good prognosis, and that I had the option to redirect his care to palliative care. I couldn't handle it. I wanted to give him a chance and i wanted him to have surgery. The surgeon told me of the statistics, out of 19 they were able to study, 4 survived. It was not looking good for my baby. I called my partner in the parents room and tried to remain positive, I refused to give up hope. He was driving over the next morning, I needed him to be there and bring the kids.
I remember sitting with my mum, and saying to her I felt it within my soul my baby wasn't going to make it. I just knew. It was so painful to admit it but I just knew.
My dad and sister arrived that night but due to visiting hours they picked mum up while I was holding bub, mum stayed with them that night so I had a night on my own, I didn't leave bub until after 1130 after cuddling him for several hours fighting sleep. I went back to my room, started writing in a diary mum bought specifically to write out his journey, I stopped for a moment and when I put my hand near my face and smelled him and lost it. I cried for hours, and went back to him after a couple of hours sleep.
The next day I cuddled bub for a while again, and then my parents and sister arrived. I brought them in and they met him.
I spent much of the day with my bub, I almost never left his side. The only time I did was to organise my room at Ronald Mc Donald house for when my kids and partner arrived, so we could all stay together and to hire the breast pump.
That afternoon, my partner arrived and I decided to not bring in the kids yet, I was going to do that the next day. My kids stayed with my parents for a little while and while my partner and I were with bub the surgeon came and we signed the consent forms for surgery that Monday. My partner took the kids to the room and I stayed with bub and had more cuddles, after a bit I needed to put him down nd the cardiologist came for a chat, and bub had a sudden, very quick episode of tachycardia and his rhythm changed momentarily. it happened so fast that neither the nurse or dr reacted in time to freeze the recording to take a look. I felt nothing but panic, they seemed so relaxed that I thought maybe it was nothing but I felt something wasn't right. I started to worry more.
That night, around 6 I think, I went back to the room and spent time with my family, I pumped and cried because double pumping was HARD, my back hurt and I cried because I had this gut feeling my baby was never going to get that milk. I spilled some and cried even more, eventually I fell asleep.
I woke up fairly early that Saturday, we took our time to go see bub, we had a coffee at the cafeteria and then I left to go see him. After a bit my partner brought the kids up and I came to get them 2 at a time to meet their little brother, I got photos, I took a video of him being given a little milk through his NG tube and then they left for a small break and I stayed with bub for a little bit (I think I pumped) before I went to get my lunch as they provide meals for breastfeeding mothers, and it was a sandwich with avocado and a kiwi fruit, neither or which I eat (kiwi allergy) so I came back to the room where I left my bag to get my wallet so I could go buy some McDonalds.
While I was there he had a sudden episode again of his sats dropping and the drs came to do an xray and we saw that he had fluid in his lungs. They gave him midazolam and a diuretic and he stabilised, with his oxygen in the 70s, not perfect but the nurse suggested I go get food so I did.
I sat in the food court and started eating the chips with my cheeseburger meal, my partner and kids came to join me not long after and then we walked to subway to get them lunch. I was sitting down about to start m burger when the doctor called me, she said something about an echo and they need a parent bedside. I immediately jumped up, said I had to go and RAN. 5 days postpartum and I ran most of the length of the hospital and was out of breath when it got to the elevator.
As soon as I arrived at his room I knew it wasn't good. It was full of people, they were pumping oxygen into him at a very high rate and his colour wasn't good. The cardiologist I hadn't met yet shook my hand and gently suggested I wait outside the room while they work out what was going on.
I walked out and I felt my heart break.
The surgeon came to talk with me, I asked to call my partner and walked out of the ward and called him, then I sent a message to mum to come asap to wait with the kids.
The surgeon met me and my partner at the door of nicu and said he didn't think bub had a very good chance, but if he stabilised he would operate the next day, but that what was happening wasn't a good sign at all. I saw his face, he was far from hopeful. I knew from his face that my baby was dying.
We sat in a room with the drs and they basically told us they felt it was hopeless operating. It was then that it hit me and my partner hard. He nearly vomited and I just cried.
We went back to our baby's room and watched the team continue to try to stabilise him.I kept begging him to give me better o2 levels, please give me 60, please. Then it was give me 65 please. They were all over the place, his ventilator going crazy. I knew there was nothing to be done, what they were doing wasn't working. he was literally dying in front of me. I kept talking to bub and kissing him, but at one point I said to him, if you cant fight anymore, goodbye.
They started talking amongst themselves about heartfelt, they were trying to get in contact with someone.
My partner refused to accept what was happening, at least at first. He didn't listen to the dr when she said what they were doing wasn't working, and eventually I just said, even if he makes it, he will be brain damaged from lack of oxygen. It was that point when I just broke down and begged them to let him die in my arms. They said of course, and eventually they heard about heartfelt, he would only be able to come for half an hour, from 4:15pm, and I remember thinking does this mean my baby will be dead within that time, but so relieved that we would get nice photos of our baby to hold onto.
Then we started to get things moving, they started unhooking things and got his bed ready to wheel down the hall where we would say our goodbye.
The photographer was there and waiting, he introduced himself and I don't think I reacted, all I could do was hold my baby's hand and I didn't want to let go.
I sat down on the chair after ripping off the belly wrap I had been wearing, they started to get things ready so I could have skin to skin with him before they took him off the oxygen. They got me a gown and I stripped off, not really caring about being seen, but they held up a sheet anyway. As soon as they placed him on my chest I felt some peace. We cried, we talked to him, we kissed him and loved on him so much. I played him a song which I had played a lot throughout my pregnancy, I wanted it to be the last thing he heard. It was 21 pilots cover, I cant help falling in love. I tried to sing along, breaking into tears too much to sing. After it finished, they asked if we were ready to take his tube out. And they did, I couldn't look, neither could my partner. As soon as that tube was gone I got to see his face without anything on it for the first time since birth. I pressed my nose against his, and gave him a kiss as I cried. My heart has never known so much love and heartbreak.
We didn't know how long it would take so we kept talking, kissing him. The photographer took some beautiful pictures, giving some suggestions like having both out hands on his head. One of those is one of my favourites. I passed him to dad, I wanted him to hold him.
The photographer eventually left, so all the photos he took were when he was still alive.
They left alone with bub, at one point we kept listening to his heart, beating slower and slower. I was never able to see him take a breath so I suspect they were very small. The doctor came in and had a listen, and said he still had his heart beating. We were getting quite distressed, waiting for him to die was so painful. It was dragging out, but we were also so grateful for each moment. He was heavily sedated, on a muscle relaxant so he was already floppy. It wasn't nice, it was like he was already gone.
Then we heard a breath, one I know well from my aged care training. His last breath. We knew at that moment, he was gone. We both tried to listen for his heart beating, and didn't hear anything. My partner got up and got a stethoscope and tried to listen, then I tried. we heard nothing. The doctor must have been watching because she came in and asked if we wanted her to have a listen. It felt like an eternity. She turned to us and said softly, 'He's sleeping' and we broke down.
We sat together for a while, I decided to get his little jumpsuit that flew with him and put him in it and then the social worker came in and asked if we wanted the kids to come in. I said no, I don't want them to remember their brother like this. She asked about fineral arrangements and i knew i wanted him cremated, I wouldn't want to be buried myself, I wanted to keep his ashes and have jewellery made so he never leaves me. I said to get my parents so they could say goodbye.
This was hard, as soon as mum came through that door she was in tears. Dad broke down. They both had a cuddle and said their goodbyes. I have never seen them so broken.
Then my partner couldn't handle seeing our son like that, he was cold, the colour was going. The social worker said to me, if I have any doubt about leaving then stay, and stay I did.
My partner went back to our room and stayed with the kids, he needed to be with them and I understood.
The nurses came to do footprints, in clay, ink and some stuff they had to heat up. They were so compassionate, it was surreal but the nicest way for things to have gone. He was starting to get stiff, the calcium was leaking into his muscles so when they did his prints his little fingers had curled a bit and weren't easy to get straight. I didn't know it would happen that fast. She talked to him, and held him when I had to pump, the compassion was overwhelming, I am so grateful for her. I wish I remembered her name.
I stayed with my baby all night, I had a fold out bed where I took him to bed with me and cuddled him as I fell asleep. When I woke a couple of hours later it hit me, and I cried and asked why my baby. I had a moment where I felt like I was watching myself and thought, this cry is one I have never heard before, this is a cry of grief, the cry I imagine all mothers would cry. I have never cried like that before.
His colour was changing, where his face was resting on my chest he went white, he was very cold so there was no doubt that he was gone. It wasn't easy, but I kept kissing him and hugging him. I got the little jacket, booties and mittens I made him and put them on, rigor mortis was kicking in more and I found that very hard to deal with. I got my phone and played him the song again, and was able to sing more of it to him. Still occasionally breaking down.
I never let him go except for the toilet, the nurse held him while I pumped. That was so hard to do, pumping now knowing for sure he was never going to have it.
I promised him I would watch the sunrise with him, like I did while I laboured with him. I told him how much I loved him. I made the decision to let him go when it was the time of his birth, so he came to me the same time he left me. I had been thinking about it for a while, I had started to notice the smell of death, it is a smell I have come across before and didn't want to remember my baby in that way. Unfortunately, I always will remember, but I do not regret a moment.
Morning came, and my partner came to see us, I shielded his face not knowing what his reaction would be, it was hard for me and I watched the change. He told me his mum was flying in, and would arrive soon. He hadn't told the kids, we would tell them together that morning, after I hand my baby over. It wasn't too long and then he had a cuddle, he even took some photos with him. I hesitated commenting on the smell, but I did, my partner did notice but like me, hesitated saying anything.
Then my mother in law arrived, right about the time I wanted to hand him over, but I waited and let her say her goodbye. Coincidentally, the time that I handed him to the paediatrician after his birth.
The nurses came back when I was ready, I wrapped him up and tucked him into my gown and then we walked out of the room. We had to go down the hallway, the only one in and out, I got scared because I would have to walk past the kids, but they didn't see us pass. We got the elevator, went downstairs and I carried my baby all the way down to the mortuary door. We passed a few big doors on the way and just outside the locked door and I gave him more kisses and then I handed him to the nurse and walked away. I couldn't bear to watch her walk him in that room, knowing exactly what that room was. When the door shut behind me I collapsed, I fell to the ground and cried. It hurt so much to have to walk away, my MIL and partner had to pick me up off the floor. It was so hard to walk away.
We packed out stuff in the room we said goodbye as fast as we could, we got the kids in and I had to tell them their brother died. My daughter and eldest son broke down, my heart, already broken, broke even more. My younger two didn't quite understand, death isn't something they know much about, they're a bit young.
I spent the rest of the day incredibly numb. I vaguely remember walking away from the hospital, sitting in our room with our family around us and wanting nothing more than to be alone. I couldn't stand being touched, or spoken to. My mum dad and sister decided to leave, I think they drove home that day.
My MIL stayed with us, we went out for lunch because we couldn't stand to cook. We needed a distraction. I cried almost the whole time.
That night we were alone, just the 6 of us. I felt so empty, I cried all night. Pumping was difficult. I hated every second.
Monday we went to the funeral home, the lady was so compassionate and we found out the hospital is paying for his cremation. They said don't give us the invoice, we only knew they were going to pay part, not all. It was a fair surprise, we would have had no problem paying, cremation isn't expensive, but it was a really nice gesture.
Tuesday I took back the breast pump I had hired and picked up the frozen milk stored. I got the last of the paperwork and got a call saying bubs ashes were ready to be picked up the next morning. The social worker I met earlier in the week met up with us, she told me HeartKids wants to put some money towards memorial jewellery which blew me away. It's amazing the kind of support you get, I'd only sent a message to the HeartKids representative that morning telling her our baby didn't make it.
Later that day I called MFM and spoke to my favourite midwife, she didn't know and it was so hard to tell her. Fortunately they kept my placenta so I picked it up on the Thursday.
Thursday was a blur, and Friday my partner went back to work. I had to let my GI know my baby didn't make it, I sent a message to his nurse and he called me straight away, he asked if I had the baby yet and I said yes, and then his next question was how are we... I had to say he passed away at 5 days old. That was hard. I haven't been well with my Crohn's since birth, so I am being seen on the following Thursday.
Today is Saturday. A week since my baby died. It's 4pm, so in 2 hours it will be exactly a week. I don't know how I am managing. I go between absolute rage and then devastation, much of the time I am numb. I don't know how I am feeling to be honest. I had 20 weeks to prepare for this, even though I never truly believed it would happen. I thought I would have 3-6 months with him, not 5 days. I am angry it was my baby but after reading his report, he had no real chance, the odds were against him, I was very lucky to get 5 days with him, let alone him survive to birth.
His diagnoses were:
#Complex Congenital Cardiac Disease
- Right atrial isomerism, ASVD common atrium large VSD
- balanced ventricles
- double outlet right ventricle (DORV) side by side great vessels with aorta to right of PA
- subpulmanory stenosis, small PV annulus (4.5mm) with good sized branch PAs
- TAPVD, supracardiac, partially obstructed, 3x connections to systematic circulation
# Heterotaxy with congenital asplenia
# IUGR
# Rib anomaly - 12 ribs left, 11 ribs right.
I will write everything as it happened, there will be things you may not want to read, especially the death of my baby boy.
It was not the journey I anticipated.
The birth was as good as it could get, but my baby was not well from the very beginning.
The last weeks of pregnancy I was asked a few times about induction, and I listened to my gut instinct to say no. At 39 weeks the consultant ran though the reasons but respected my decision to wait for labour and wait I did.
From 38 weeks I started experiencing prodromal labour, it was frustrating and uncomfortable, I kept worrying that I would not get signs of early labour and accidentally birth at home. My body knew what it needed to do though. I need to remember that.
At 40 weeks and 1 day, I noticed a couple of small, very small gushes. I assumed it was either a small leak or just usual end of pregnancy discharge so I ignored it and kept on with my day. We went for a long drive that night and I was once again dealing with prodromal labour, but I had a feeling that it was going to become something. Just something instinctual.
When we got home, I lied in bed and noticed a few more small leaks, but once again ignored them. I watched the movie Sunshine, every few nights I would watch a movie or a show to distract myself from the prodromal labour and eventually fall asleep. I was up and down what felt a million times to pee, more so than usual, which was really often anyway. At 1030pm that night, after the movie had finished I went to the toilet and noticed the leak was pink tinged. I smelled it and knew it was my waters. I knew my baby was going to be born very soon.
My partner went to bed around this time, I hesitated saying anything because I was in a bit of denial, but said 'heads up, I think my waters are leaking so I will just wait for some proper contractions' and we went to bed.
At 2am I noticed I was getting some waves, with a bit more kick to them than I had been having. They were similar enough to my last baby, where the pressure was down low instead of sharp pains across the lower part of my belly. I focused on these waves and noticed they were not regular but coming and seeming to get a little stronger at times. I got out of bed and peed again, noticing more pink fluid. I was uncomfortable enough that I went to lie down on the lounge for a bit. With more back and forth to the toilet. My bowels cleared, and then I knew, I was in early labour.
I noticed the contractions were getting stronger and at around 420am I decided to download a contraction app and time my contractions. I don't usually do that when in labour but I knew it would be helpful information for the midwife when I called.
I timed them from 0421 to 0437 and they were between 5 and 3 minutes apart, lasting between 30 and 50 seconds. So I decided to snuggle into bed next to my partner and wake him, I told him I was in labour but I didn't know when to call his mum who would come watch the kids. He decided to call straight away and it was a good thing he did.
He made a comment about getting what I mean about my waters, he said I smelled like kittens. That birthy smell.
While we waited for his mum, I got my bags ready and texted my student midwife and then called the women's assessment. I said to the midwife I was coming in, I was having contractions and felt they became proper labour around 2am when I woke up but I had suspected I was leaking fluid from about 10pm, and that baby had a cardiac condition so I wasn't going to wait for them to get stronger. She said since this was my 5th baby I knew what I was doing and that she would see me when I arrived.
My MIL arrived and we left almost straight away, the contractions were getting stronger, although not by much or any closer.
I didn't have many in the car on the way, being almost 5am it wasn't a long drive, we were there quite quickly. When we got to the hospital I had one contraction as I was getting out the car, and two more on the walk to women's assessment where I was taken in and put on the monitor. The contractions fizzled, I started to doubt it was labour until I got one good one every now and then.
I was on the monitor maybe 20 minutes before I was moved to my room. It was huge not the claustrophobic room I had been shown during my pregnancy, I felt pretty comfortable and my student was there waiting.
The midwife introduced herself and we found out she had the same name as my daughter, and that she was fine with me having bubs heartbeat checked every 15 minutes instead of constant monitoring, but she got the wireless ones anyway just in case there was a sign that meant CFM was a good idea, I was fine with that. We discussed what would happen when I needed to pus, I was surprised with the fact that there would not be just one or two extras, but 4, a paed, two other drs and a NICU nurse. I asked if they would wait behind the curtain until we needed them and that was fine. I would definitely let them know when I was feeling an urge to push so they would be ready and waiting.
We just chatted for a bit, I went through what early labour was like and that I was pretty sure I was leaking. I stood for a while and eventually got on the birth ball. Things were just so easy, I kept thinking how odd this labour was and that it just wasn't picking up like I expected.
Shift change happened an hour in, and I met my new midwife, she was just as lovely and used to work with the MGP and did homebirths so she was definitely the right kind of midwife for me. She was reassuring and kept telling me my body knew what it was doing for my baby's condition. Things I wasn't thinking myself, and it was definitely the kind of support I needed.
I watched the sun rise, and the OB came in and introduced himself, he basically said he was happy with my birth plan and wanted to know if I would be open to changing things if something happened and I just said of course I was, I was in hospital for my baby, and I would do what it took to make sure he arrived safely. I was still having such random contractions, I swear every 10 minutes I would get a good one and then they would go weaker again.
I lied in bed for a little while and then decided to get out and have a shower, I was having the occasional strong contraction that made me make a lot of noise.
I was crying at this point and cried harder when I was in the shower. I was starting to get very emotional and ended up bawling in the shower. I just had this overwhelming sense that something was not right. Baby was doing fine but I felt so strongly that he wouldn't be. I was in the shower for a while and the irregularity and lack of intensity of the contractions were bothering me a lot. They seemed to stop altogether for a while. I checked myself and when the midwife heard me say I had, she asked what I thought I was, my guess was about 8. The drs came in and were waiting, getting everything set up knowing I would surprise them with the speed of how fast I birth my babies. In hindsight I was complete. It was a few contractions where I started to doubt myself and checked again, I felt what I thought was a 2cm cervix and lost control, I said I didn't think I was 8 and that it was gong to be a long time. We sent the drs out. Little did I know at the time, I was actually poking my baby's mouth.
I had enough of the shower, thinking birth was a long way off I got back into bed, my back hurting s lot. My student midwife got me a heat pack and held it to my back while I lied there and tried to nap. I was so exhausted, I kept crying about how tired I was, the contractions never really got to a point where I felt things were moving along. I started to worry that I would end with a cesarean because bub would get distressed.
Then my waters went pop, very loudly and I didn't feel a gush but pushed ever so slightly and felt the water come out a little. The next contraction hurt a lot, I started to panic. The pressure was intense and between contractions I looked at my partner and said, I think I am pushing. he immediately sprung into action and started putting the blankets on the floor, surprising everyone in the room. I got down and immediately needed to push hard. I couldn't control it. I held onto my partner and panicked even more and it wasn't until I heard the midwife coach me into breathing that I managed to calm down. I pushed hard again and tried so hard to fight it, I felt bubs head move down. next push babys head came out, the urge didn't go so I kept pushing and he just slipped out into my hands. I heard a collective woah and then someone said he was tangled, but I said no, his cord was very short. He was also very small, it didn't seem real.
He didn't cry immediately, he made some noises but I wasn't happy with them so I rubbed his back and talked to him like I would normally do regardless of where I was. I remember looking up and seeing the paed in front of me and after a little while she asked to check his oxygen, I said yes and she jumped up and got the little monitor and stuck it on him and sat by me. I saw the levels were in the 60s and so I asked what she was looking for, she said 80s and asked if she could take him to NICU. I started to cry, because I felt like the moment I handed him over it was it. I said yes, my partner got the cord tie, I handed bub as best as I could with his short cord in my partners hands and I tied it on and then cut the cord, my midwife took photos for us.
As soon as he was free, I gave him a kiss and then handed him to the paed, and watched them all almost rush out of the room with my partner. It felt so sudden. It was just 20 minutes after birth that he was gone out of the room.
I focused next on the placenta, I waited nearly an hour but after talking with my midwife and sitting on the birth stool when the paed came back in, she asked me some questions and told me baby wasn't well so I decided to have the shot. My midwife was gentle, she talked the whole process with me and gently applied some traction while I pushed, it was surprising how much I needed to push! the placenta was absolutely tiny, I found out it weighed about 200g. I lost about 100ml of blood, which is next to nothing. As soon as I inspected the placenta and both my midwife and I were happy with it being intact she said she didn't see any tearing, just small grazing, I had no idea she was able to see tearing when the placenta came out, so I never needed to be touched. It was rather healing after my last experience. I got up, grabbed my clothes and had a very quick wash before walking to NICU where bubba was having an echo.
I don't remember how things went from here on, I just remember that bub was on CPAP and his colouring wasn't great. I got to have a hold and I remember my partner saying it wont be long and bub will be snuggled up in bed with me. I knew he was wrong. I knew bub wasn't ok. They did so many tests, I don't remember what. I did ask how big he was and he was a teeny 2.6kg, 47cm long. Very small for a 40+2 weeker. Definitely IUGR, I remember being angry they stopped the scans at 34 weeks and that would have been picked up. But I also felt very strongly that he was better off being born when he was.
After a while they swapped his CPAP to a tube under his nose, and I asked about feeding. The dr wasn't sure and wanted to observe his noises, he was convinced enough that feeding should be ok so I breastfed him. After a while my partner went home to the kids.
About 5pm the cardiologist came to tell me bub needed surgery, very soon and that they would transfer to Melbourne within the next 24 hours as soon as a bed was available. I had the nurse talk to my partner, i was in shock. Then i called my mum, I hadn't told her bub was born yet, and one of the first things i had to say was he wasn't well and we're going to Melbourne, and get her stuff organised because she would be coming with me.
The cardiologist or another dr, I don't remember said they would call at 6am to see if there was a bed. I stayed with him and had as many cuddles as I could. It felt like an eternity but it was only one night. I was back and forth feeding bub and bringing colostrum for the next 10 hours, unfortunately his blood gasses weren't good so when I came back for a feed after next to no sleep to find him back on CPAP. I still got a cuddle but I never got to feed him again.
I stayed with him from about 4am onwards, fighting sleep deprivation waiting for them to call and hear about the bed. they called at 6 and there was no bed, so I decided to go for a nap. I didn't get much so I was back again not long after. I got another cuddle, still fighting the desire to sleep, and my student came to visit before her shift began. my partner was on his way. he arrived around 8 I think.
When he arrived, I was cuddling bub, and then we decided to go get a coffee and have a toilet break. We went back to my room for a little while, around 10-10:30 I don't remember, only to get the cardio nurse come and say Melbourne rang and that they have a bed, they were flying him out at 12 and MedStar were there and they were about to intubate him. She was telling me they could get me a flight at 1, and gave me paperwork. It happened so fast. I went down and wanted a cuddle before they intubated him, I didn't want to see that. There was a rush of people, MedStar in their red uniforms and the isolette type cot they would transfer him in. It was then that it set in how sick my baby was. Everyone was telling me things and I barely remember what they said. I cuddled my baby, ever so quickly hovering over his bed before I had to leave for them to intubate.
We went back to my room and I called mum. I just cried with my partner and we waited for the nurse to come with the paperwork I needed to fly and the discharge papers.
As soon as I got them, we left for the airport, mum on her way and planning to meet us there. It was 1130 when I left the hospital.
We drove to the airport, and on the ramp going in mum pulled up beside us, perfect timing.
We went to check in, and then we waited at the gate for the flight which would leave just after 1. we didn't think to watch for the royal flying doctors who would fly bub out, we could have seen them through the window but we were trying to distract ourselves.
Saying goodbye to my partner when it was time to go was the hardest thing I have ever done.
The flight was fairly quick, only an hour and 20 minutes. When we landed we got a taxi and went straight to the royal Melbourne childrens hospital and when we got to the Butterfly ward we found bub had literally just arrived 5 minutes before we did, and the first thing I did was go over to him. it felt so surreal, I didn't like seeing the intubation tube but it was in his nose not his mouth like I was worried it would be.
Things are kind of a blur from here on, I stayed with him as much as I could and pumped as often as I was able. I started to get an awesome supply despite worrying about pumping antenatally.
We stayed in the new mothers room, I hardly ever left my baby. when he was 3 days old I broke down and cried behind the curtain and complained about not being able to do anything for my baby. it want long after that they let me have a cuddle, it was so scary with all the wires and tubes. but it felt so good to finally hold him.
Every time I held him I had an overwhelming sense of exhaustion wash over me, I tried so hard to stay awake. I held him for hours, only ever leaving to pump, toilet or eat, and sleep for about 2-3 hours.
I almost never left his side.
on Wednesday they did a CT, to see how his heart was. I was to find out what was going on after they had a good look and would talk to me the next day about what surgery will need to happen.
On Thursday I had the specialists all come and have a chat with me, mum by my side. And they told me everything. My baby didn't have a very good prognosis, and that I had the option to redirect his care to palliative care. I couldn't handle it. I wanted to give him a chance and i wanted him to have surgery. The surgeon told me of the statistics, out of 19 they were able to study, 4 survived. It was not looking good for my baby. I called my partner in the parents room and tried to remain positive, I refused to give up hope. He was driving over the next morning, I needed him to be there and bring the kids.
I remember sitting with my mum, and saying to her I felt it within my soul my baby wasn't going to make it. I just knew. It was so painful to admit it but I just knew.
My dad and sister arrived that night but due to visiting hours they picked mum up while I was holding bub, mum stayed with them that night so I had a night on my own, I didn't leave bub until after 1130 after cuddling him for several hours fighting sleep. I went back to my room, started writing in a diary mum bought specifically to write out his journey, I stopped for a moment and when I put my hand near my face and smelled him and lost it. I cried for hours, and went back to him after a couple of hours sleep.
The next day I cuddled bub for a while again, and then my parents and sister arrived. I brought them in and they met him.
I spent much of the day with my bub, I almost never left his side. The only time I did was to organise my room at Ronald Mc Donald house for when my kids and partner arrived, so we could all stay together and to hire the breast pump.
That afternoon, my partner arrived and I decided to not bring in the kids yet, I was going to do that the next day. My kids stayed with my parents for a little while and while my partner and I were with bub the surgeon came and we signed the consent forms for surgery that Monday. My partner took the kids to the room and I stayed with bub and had more cuddles, after a bit I needed to put him down nd the cardiologist came for a chat, and bub had a sudden, very quick episode of tachycardia and his rhythm changed momentarily. it happened so fast that neither the nurse or dr reacted in time to freeze the recording to take a look. I felt nothing but panic, they seemed so relaxed that I thought maybe it was nothing but I felt something wasn't right. I started to worry more.
That night, around 6 I think, I went back to the room and spent time with my family, I pumped and cried because double pumping was HARD, my back hurt and I cried because I had this gut feeling my baby was never going to get that milk. I spilled some and cried even more, eventually I fell asleep.
I woke up fairly early that Saturday, we took our time to go see bub, we had a coffee at the cafeteria and then I left to go see him. After a bit my partner brought the kids up and I came to get them 2 at a time to meet their little brother, I got photos, I took a video of him being given a little milk through his NG tube and then they left for a small break and I stayed with bub for a little bit (I think I pumped) before I went to get my lunch as they provide meals for breastfeeding mothers, and it was a sandwich with avocado and a kiwi fruit, neither or which I eat (kiwi allergy) so I came back to the room where I left my bag to get my wallet so I could go buy some McDonalds.
While I was there he had a sudden episode again of his sats dropping and the drs came to do an xray and we saw that he had fluid in his lungs. They gave him midazolam and a diuretic and he stabilised, with his oxygen in the 70s, not perfect but the nurse suggested I go get food so I did.
I sat in the food court and started eating the chips with my cheeseburger meal, my partner and kids came to join me not long after and then we walked to subway to get them lunch. I was sitting down about to start m burger when the doctor called me, she said something about an echo and they need a parent bedside. I immediately jumped up, said I had to go and RAN. 5 days postpartum and I ran most of the length of the hospital and was out of breath when it got to the elevator.
As soon as I arrived at his room I knew it wasn't good. It was full of people, they were pumping oxygen into him at a very high rate and his colour wasn't good. The cardiologist I hadn't met yet shook my hand and gently suggested I wait outside the room while they work out what was going on.
I walked out and I felt my heart break.
The surgeon came to talk with me, I asked to call my partner and walked out of the ward and called him, then I sent a message to mum to come asap to wait with the kids.
The surgeon met me and my partner at the door of nicu and said he didn't think bub had a very good chance, but if he stabilised he would operate the next day, but that what was happening wasn't a good sign at all. I saw his face, he was far from hopeful. I knew from his face that my baby was dying.
We sat in a room with the drs and they basically told us they felt it was hopeless operating. It was then that it hit me and my partner hard. He nearly vomited and I just cried.
We went back to our baby's room and watched the team continue to try to stabilise him.I kept begging him to give me better o2 levels, please give me 60, please. Then it was give me 65 please. They were all over the place, his ventilator going crazy. I knew there was nothing to be done, what they were doing wasn't working. he was literally dying in front of me. I kept talking to bub and kissing him, but at one point I said to him, if you cant fight anymore, goodbye.
They started talking amongst themselves about heartfelt, they were trying to get in contact with someone.
My partner refused to accept what was happening, at least at first. He didn't listen to the dr when she said what they were doing wasn't working, and eventually I just said, even if he makes it, he will be brain damaged from lack of oxygen. It was that point when I just broke down and begged them to let him die in my arms. They said of course, and eventually they heard about heartfelt, he would only be able to come for half an hour, from 4:15pm, and I remember thinking does this mean my baby will be dead within that time, but so relieved that we would get nice photos of our baby to hold onto.
Then we started to get things moving, they started unhooking things and got his bed ready to wheel down the hall where we would say our goodbye.
The photographer was there and waiting, he introduced himself and I don't think I reacted, all I could do was hold my baby's hand and I didn't want to let go.
I sat down on the chair after ripping off the belly wrap I had been wearing, they started to get things ready so I could have skin to skin with him before they took him off the oxygen. They got me a gown and I stripped off, not really caring about being seen, but they held up a sheet anyway. As soon as they placed him on my chest I felt some peace. We cried, we talked to him, we kissed him and loved on him so much. I played him a song which I had played a lot throughout my pregnancy, I wanted it to be the last thing he heard. It was 21 pilots cover, I cant help falling in love. I tried to sing along, breaking into tears too much to sing. After it finished, they asked if we were ready to take his tube out. And they did, I couldn't look, neither could my partner. As soon as that tube was gone I got to see his face without anything on it for the first time since birth. I pressed my nose against his, and gave him a kiss as I cried. My heart has never known so much love and heartbreak.
We didn't know how long it would take so we kept talking, kissing him. The photographer took some beautiful pictures, giving some suggestions like having both out hands on his head. One of those is one of my favourites. I passed him to dad, I wanted him to hold him.
The photographer eventually left, so all the photos he took were when he was still alive.
They left alone with bub, at one point we kept listening to his heart, beating slower and slower. I was never able to see him take a breath so I suspect they were very small. The doctor came in and had a listen, and said he still had his heart beating. We were getting quite distressed, waiting for him to die was so painful. It was dragging out, but we were also so grateful for each moment. He was heavily sedated, on a muscle relaxant so he was already floppy. It wasn't nice, it was like he was already gone.
Then we heard a breath, one I know well from my aged care training. His last breath. We knew at that moment, he was gone. We both tried to listen for his heart beating, and didn't hear anything. My partner got up and got a stethoscope and tried to listen, then I tried. we heard nothing. The doctor must have been watching because she came in and asked if we wanted her to have a listen. It felt like an eternity. She turned to us and said softly, 'He's sleeping' and we broke down.
We sat together for a while, I decided to get his little jumpsuit that flew with him and put him in it and then the social worker came in and asked if we wanted the kids to come in. I said no, I don't want them to remember their brother like this. She asked about fineral arrangements and i knew i wanted him cremated, I wouldn't want to be buried myself, I wanted to keep his ashes and have jewellery made so he never leaves me. I said to get my parents so they could say goodbye.
This was hard, as soon as mum came through that door she was in tears. Dad broke down. They both had a cuddle and said their goodbyes. I have never seen them so broken.
Then my partner couldn't handle seeing our son like that, he was cold, the colour was going. The social worker said to me, if I have any doubt about leaving then stay, and stay I did.
My partner went back to our room and stayed with the kids, he needed to be with them and I understood.
The nurses came to do footprints, in clay, ink and some stuff they had to heat up. They were so compassionate, it was surreal but the nicest way for things to have gone. He was starting to get stiff, the calcium was leaking into his muscles so when they did his prints his little fingers had curled a bit and weren't easy to get straight. I didn't know it would happen that fast. She talked to him, and held him when I had to pump, the compassion was overwhelming, I am so grateful for her. I wish I remembered her name.
I stayed with my baby all night, I had a fold out bed where I took him to bed with me and cuddled him as I fell asleep. When I woke a couple of hours later it hit me, and I cried and asked why my baby. I had a moment where I felt like I was watching myself and thought, this cry is one I have never heard before, this is a cry of grief, the cry I imagine all mothers would cry. I have never cried like that before.
His colour was changing, where his face was resting on my chest he went white, he was very cold so there was no doubt that he was gone. It wasn't easy, but I kept kissing him and hugging him. I got the little jacket, booties and mittens I made him and put them on, rigor mortis was kicking in more and I found that very hard to deal with. I got my phone and played him the song again, and was able to sing more of it to him. Still occasionally breaking down.
I never let him go except for the toilet, the nurse held him while I pumped. That was so hard to do, pumping now knowing for sure he was never going to have it.
I promised him I would watch the sunrise with him, like I did while I laboured with him. I told him how much I loved him. I made the decision to let him go when it was the time of his birth, so he came to me the same time he left me. I had been thinking about it for a while, I had started to notice the smell of death, it is a smell I have come across before and didn't want to remember my baby in that way. Unfortunately, I always will remember, but I do not regret a moment.
Morning came, and my partner came to see us, I shielded his face not knowing what his reaction would be, it was hard for me and I watched the change. He told me his mum was flying in, and would arrive soon. He hadn't told the kids, we would tell them together that morning, after I hand my baby over. It wasn't too long and then he had a cuddle, he even took some photos with him. I hesitated commenting on the smell, but I did, my partner did notice but like me, hesitated saying anything.
Then my mother in law arrived, right about the time I wanted to hand him over, but I waited and let her say her goodbye. Coincidentally, the time that I handed him to the paediatrician after his birth.
The nurses came back when I was ready, I wrapped him up and tucked him into my gown and then we walked out of the room. We had to go down the hallway, the only one in and out, I got scared because I would have to walk past the kids, but they didn't see us pass. We got the elevator, went downstairs and I carried my baby all the way down to the mortuary door. We passed a few big doors on the way and just outside the locked door and I gave him more kisses and then I handed him to the nurse and walked away. I couldn't bear to watch her walk him in that room, knowing exactly what that room was. When the door shut behind me I collapsed, I fell to the ground and cried. It hurt so much to have to walk away, my MIL and partner had to pick me up off the floor. It was so hard to walk away.
We packed out stuff in the room we said goodbye as fast as we could, we got the kids in and I had to tell them their brother died. My daughter and eldest son broke down, my heart, already broken, broke even more. My younger two didn't quite understand, death isn't something they know much about, they're a bit young.
I spent the rest of the day incredibly numb. I vaguely remember walking away from the hospital, sitting in our room with our family around us and wanting nothing more than to be alone. I couldn't stand being touched, or spoken to. My mum dad and sister decided to leave, I think they drove home that day.
My MIL stayed with us, we went out for lunch because we couldn't stand to cook. We needed a distraction. I cried almost the whole time.
That night we were alone, just the 6 of us. I felt so empty, I cried all night. Pumping was difficult. I hated every second.
Monday we went to the funeral home, the lady was so compassionate and we found out the hospital is paying for his cremation. They said don't give us the invoice, we only knew they were going to pay part, not all. It was a fair surprise, we would have had no problem paying, cremation isn't expensive, but it was a really nice gesture.
Tuesday I took back the breast pump I had hired and picked up the frozen milk stored. I got the last of the paperwork and got a call saying bubs ashes were ready to be picked up the next morning. The social worker I met earlier in the week met up with us, she told me HeartKids wants to put some money towards memorial jewellery which blew me away. It's amazing the kind of support you get, I'd only sent a message to the HeartKids representative that morning telling her our baby didn't make it.
Later that day I called MFM and spoke to my favourite midwife, she didn't know and it was so hard to tell her. Fortunately they kept my placenta so I picked it up on the Thursday.
Thursday was a blur, and Friday my partner went back to work. I had to let my GI know my baby didn't make it, I sent a message to his nurse and he called me straight away, he asked if I had the baby yet and I said yes, and then his next question was how are we... I had to say he passed away at 5 days old. That was hard. I haven't been well with my Crohn's since birth, so I am being seen on the following Thursday.
Today is Saturday. A week since my baby died. It's 4pm, so in 2 hours it will be exactly a week. I don't know how I am managing. I go between absolute rage and then devastation, much of the time I am numb. I don't know how I am feeling to be honest. I had 20 weeks to prepare for this, even though I never truly believed it would happen. I thought I would have 3-6 months with him, not 5 days. I am angry it was my baby but after reading his report, he had no real chance, the odds were against him, I was very lucky to get 5 days with him, let alone him survive to birth.
His diagnoses were:
#Complex Congenital Cardiac Disease
- Right atrial isomerism, ASVD common atrium large VSD
- balanced ventricles
- double outlet right ventricle (DORV) side by side great vessels with aorta to right of PA
- subpulmanory stenosis, small PV annulus (4.5mm) with good sized branch PAs
- TAPVD, supracardiac, partially obstructed, 3x connections to systematic circulation
# Heterotaxy with congenital asplenia
# IUGR
# Rib anomaly - 12 ribs left, 11 ribs right.
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