When it rains it pours...

So much has happened in the couple of weeks I wrote my last post. I'm not sure how I have managed to cope...

Where oh where to begin..


I might as well start at the beginning of this scary rollercoaster ride we cannot get off.

I had my 20 week scan booked at a local hospital radiology clinic and  which was the 19th of February, I was unusually nervous because my GP wrote the referral and he messed up the 12 week one. I was worried they wouldn't do the scan, and nearing midway through my 21st week, I knew it was best to get it done sooner rather than later. I was not desperately hoping for a girl, but it did cross my mind a lot.

We arrived, my bladder refusing to co-operate and fill up so I was basically empty so I tried to drink water in the waiting room, and then the tech called me in for the scan. My partner and E were with me and we walked together to the room and I lied down with my belly exposed ready to be scanned.
Of course, my bladder was pretty much empty but that didn't stop the scan, the lady started off as they usually do and then asked if we wanted to know the sex, I knew it was a boy, and when she said it was a boy, I was disappointed but my next thought was, just please be healthy.

The scan was taking a while, she was having troubles getting good pictures of the baby, he was refusing to budge out of my pelvic floor, like it was a hammock. She was spending a fair amount of time looking at his heart, and I could see the blood flow wasn't the same as I was used to seeing. I started to get a little nervous, but thought it was purely his position.
I was asked to roll from side to side as she poked bub to move, then getting me on my hands and knees to wriggle bub out of my pelvis. Then she asked a second tech to come in and be a second pair of eyes. Things didn't click at this time, I'd had a second paid of eyes during a scan before so I thought nothing of it.
Due to how long they had taken trying to get a good look, they decided to ask me to go for a walk and see if I could get more water in and see if I could get him to budge. We went to the café and had a coffee and I paced around our table trying to wriggle bubba around.
When it was time to go back, we were called through and we began again, my bladder had barely filled and he hadn't moved enough to get a good visual on his heart. I still thought very little about it as this had happened twice before with my other babies.
Then they started looking very closely at his heart, and decided to call a Dr in to see what was going on, saying to me they just cant get a good picture so they wanted the Dr to see in real time and explain to me what they were seeing.
I still didn't work out something was up... it seemed normal, they were a little confused but this seemed normal enough.
The Dr came in, and as he was watching the scan I noticed a change in the room. They were seeing something that wasn't normal, and I started to worry.
Then the Dr started talking, he began to explain they could see a defect with baby's heart and that it would need an echo to determine exactly what was going on, I thought not much of it, babies are born with holes in their hearts and they don't always need surgery so I assumed it was something minor but I would need an echo done within a week.
In that instant things began to change for me, my gut feeling that something wasn't perfect was confirmed and I was pretty numb initially. They told me to see my GP asap to get a referral to the hospital for an echo which would have to be done at the hospital. I hadn't even had an antenatal appointment at this point so I was worried they wouldn't fit us in.
With this new information, we walked out of the room and I began to cry for the first time, my partner tried to reassure me but I knew something was wrong. They just had no way of telling us exactly what. We got to the car and I made my partner call my go to make the appointment, they managed to fit us in that afternoon.
When I saw my GP I knew very little, I told him what I was told and he immediately got the report and then made a referral to the hospital, faxing it and then asking me to see them either that night or the next day. I chose to wait the next day, and it was a good thing we did... we were completely unprepared for what was to come.
I read the report as my GP gave me a copy, it detailed the problems with bubs heart and it didn't look good, they had queried Tetralogy of Fallot, a pretty severe combination of heart defects. I tried as hard as I could not to google it, thinking the absolute worst, and when I finally did google, I was a little reassured baby's heart was an easy fix.


Tuesday morning I woke up, I hadn't slept well out of worry. I wanted to get to the hospital as soon as we could that morning and find out exactly what was going to happen and what was wrong with my baby. We arrived around 10, not thinking we would be there all day. We were though.

I got to women's assessment because my GP literally had no clue where to send me, and I gave them the report saying I was told to come in. The midwife at the desk had a read and said to sit down and wait so she could call the right people and see where I should go.
After a few minutes, she came back and said I need to go to the maternal fetal medicine office (MFM), and speak to a midwife called C. So we did. We walked up and told the lady at the desk I was there to see C.
We were led into an office where C read the report and told us they don't do echos every day, only Mondays and Thursdays so they would get a referral in and I would have one either that Thursday or the Monday to come, and then we would know more. She did say there was a doctor on that day who could do a quick scan and see for themselves what was going on so we agreed. We would have to go wait for a little while so we went for a coffee, and then came back when the dr was available about an hour later.
They took me to the ultrasound machine, a brand new one that they were still teaching the OBs to use, the representative was in the room and was explaining how to use it. I had several people in the room at the time, two OBs, one cardiologist and the teaching lady.
They started having a look and said at the beginning, depending on the severity of the heart condition, I may have to give birth interstate at the major hospital next to the children's hospital where the specialist cardiologists are. I began to cry because I had no idea things were that serious, I'd barely wrapped my head around a hospital birth let alone a different state!
It took quite a while for them to finish the scan, saying the only way to know what was going on for sure was when the paed/fetal cardiologist was in to do the echo, but what they were seeing was severe. I was numb.
My baby has a severe heart defect.
The head OB and the other doctors sat us down and explained what they were seeing, and that I would need to birth in hospital and be monitored closely. They explained that sometimes heart defects could indicate a genetic abnormality and suggested an amniocentesis which I agreed to immediately. I knew what was involved and the risks but this was one of those times the information we could get from it was more important. What I didn't expect was practically as soon as I signed the consent form they began to prepare things to get it done. I was asked to get bloods done, this was to confirm I was a negative blood type and see if I had been sensitised, so they could access the anti-D injection post amnio. I was certain it was necessary, despite not willing to have it unnecessarily, I figured if this was so bad that this baby was incompatible with life, I wanted the option to try for another baby... even though this was an extremely painful thought. I'd been feeling my baby move for a couple of weeks, I had a decent belly already and was so scared of having an empty belly with no baby to show for it.
I got the bloods done, my partner had to go get the kids from school so I was alone, met the doctor at the radiology clinic in the hospital, fortunately I didn't wait long. A few moments before I was called in, a friend of mine successfully freebirthed her vbac baby and I was barely able to congratulate her before the dr came to get me, so I was torn between absolute terror and joy...
I got to the room and was greeted by the cardiologist (non specialist one, the one that was with us during the initial MFM scan) and the head OB who was to do my amnio, as well as my midwife C, one of the two MFM midwives. I was starting to get scared, not so much of the needle but what this all represented. I didn't expect that morning to start off like it did, let alone me having an amniocentesis that afternoon, the day after I was given the news my baby had a heart problem.

My midwife held my hand, and they scanned my belly to see where a good pocket of fluid was, and see where baby was. Then they wiped the gel off and sterilised my belly, and I started to get scared.
They quickly scanned again, and baby was out of the way, and then the dr went for it, and oh my freaking gosh, it hurt more than I expected. They pierced me just above my pelvic bone, roughly where a cesarean incision would be but to the left. I panicked, they talked to me and reminded me to breathe, and it felt like it went on forever. I was relieved when it was over, but I was hurting quite a lot. It really did feel like I had been stabbed, despite the needle being extremely thin.
My midwife helped me get up, and they gave me a quick reassurance that baby stayed out of the way, even though I felt him kick like mad during the amnio. I was asked to check the vials of fluid, and sign them, feeling so strange seeing something I would not normally see for many more weeks... the vials were warm, which was confronting... this was my baby's fluid, in my hands, in a little glass vial.
Realisation began to hit me then, I knew things were far more serious than we could have imagined.
I sat with my midwife for a little while and talked about things from birth to past trauma which may affect my care, she is absolutely lovely, I feel so safe in her care. It's amazing what the right person can do despite a really sh*tty situation to make you feel ok.
I had a coffee and she got me a tray of food because I hadn't eaten that day, I was cramping a bit and was waiting for my partner to finish with the kids and come pick me up from the hospital.
It was uncomfortable to walk down to meet him, and I had to be extra careful when I got in the car. But I was relieved we would get answers. I'd be getting a phone call the next day to tell me if I was having the echo the Thursday or Monday, other than that I just went home, cried a lot and was made to sit on my bottom and do nothing but rest. I had my mum call me and I told her not only that I was pregnant (i'd been keeping it quiet, just because I wanted my little secret a little longer) but that baby had a severe heart defect we were assuming was tetralogy of fallot (TOF) we cried together and talked about a lot of things. It was a relief that she knew, and that she would have us in her thoughts. I then posted on my facebook that I was having a baby, with a heart defect, and was overwhelmed with the love and support from my friends all around the world. It was bittersweet, being congratulated, but at the same time them expressing their sadness that this is what my poor baby had, knowing surgery is a definite.

I got the call saying the echo was the Thursday morning, and we began to get nervous. I was looking forward to the cardiologist explaining what was going on, I just didn't expect him to be taken by surprise.
We arrived at radiology that morning, and then after a short wait (we got there early) we were called in and the ultrasound tech was there getting some pictures while we waited for the specialist to arrive, he flew in from interstate that morning, the poor guy had to run off to pee mid scan he was that busy.
I expected to have him talk about what he was seeing as the scan was done, but he and the tech were umming and aaahing, trying their absolute best to see what was going on with bubs heart. It was so long my partner took our toddler out of the room to get lunch from the cafeteria. It seemed like forever they were muttering between themselves trying to work out what was what and what went where. Finally he said a big, ah! and put the wand down, and asked me to come to the next room to explain what was up.
My memory is a little fuzzy here, because so darn much info was given, but basically baby's heart is unique, it had similarities to TOF but some problems were entirely different.
The bottom of his heart, where it is meant to be two separate sections, is just one, the valves where the aorta and pulmonary valve go are on the one side, not where they are meant to be, and his major arteries are on the one side with the flow not going where it needs to. He needs multiple, not just one or two, multiple open heart surgeries. And he may need to have them as early as a newborn, 4 month old or maybe stretch it out to 6 months. It is a combination of severe defects, severe enough the dreaded T word was mentioned.
That's right, it is so bad, his little heart is so messed up, we had the option to terminate the pregnancy.
They can't tell us what repairs will be done, what they can even do for him, whether or not he will need a heart transplant later in life or whether he will be ok at birth. We don't even know if he will have issues outside of his heart. So many questions, and no answers. I was 21 weeks and 5 days, I had until the day before 23 weeks to decide to terminate or not, at 23 weeks baby is viable and therefore it's not allowed to terminate a pregnancy that late.
It didn't feel right to make a decision, but we were open to it if there were other genetic abnormalities that would make for an incredibly sick child with little chance of a halfway decent life, which would destroy our family as it is now. My older kids don't deserve to have their mum and dad taken away from them permanently, as a result of another baby. I am sure they would grieve their baby brother if we did decide to terminate, but it would be less painful in the long run.

We saw the doctors after the echo, so they could explain a little more about what the cardiologists understanding of our situation was, and what it means for us, for antenatal care and so on.
I'm having another echo done at 28 weeks, which is about 5 weeks away now, and another at 34 weeks to ensure he is growing well, his heart is growing the way it needs to given its uniqueness, heart babies sometimes don't grow well, and that's something we need to be aware of otherwise I will have to give birth interstate, much earlier than anticipated.

My birth plan has figuratively gone out the window.
I will need to be induced, so that the right staff are onboard at the time of birth if he isn't ok, and to ensure I am in hospital to me monitored just in case he doesn't tolerate labour, although I have been assured heart babies tend to do well, it's birth that things get iffy. I will have freedom to labour how I want but I have to be aware they may need to take him soon after birth to go to special care for medical help. I am beyond scared, I only know unhindered birth, so the birth I am facing could not be more opposite, and fortunately the MFM team understand and will accommodate my needs and wishes as best as they are able. I may be lucky and only need AROM to start off labour, otherwise I'd be having, at least initially, artificial oxytocin, with the promise they can turn it off if I need/ want. I have been told I can labour freely, with wireless monitors, and access the shower (if I had longer labours the bath would have been acceptable but I don't, it's too dangerous to birth a heart baby in water) which I am ok with, I don't really like water birthing very much, I need to feel grounded and I don't have to go near the bed if I don't want to, I can birth him on the floor and catch him myself if I want, I just have to be aware there will not only be two midwives at the actual birth, but a specialist or two to assess bubba when he's out just in case he has to go to the nursery sooner.. I am anticipating him going for an echo soon after birth, hopefully I have the golden hour and can go with him in that circumstance, but my partner won't be leaving his side.
On Tuesday, we went back to the MFM team for an antenatal, the first official one, and I spoke with the midwife about all the things on my mind at the time. Then we were waiting for the OB to come chat with us, so we went to the labour ward as I asked to see it, only for all the rooms to be full except one, the one room I'm pretty sure she said I wouldn't be put in. It smelled so clinical, and it began to trigger my PTSD. I started to doubt continuing the pregnancy was a good idea, Could I even go through with this pregnancy knowing what potentially greets me at the end? She told me some policies, such as it's policy to have a managed 3rd stage with any type of induction although I am free to refuse that, policy isn't law I quoted which she agreed. I asked what I was facing with a basic induction, and I didn't like one thing I heard... more triggers from my past, having no choice as to what happens to me and my body... I started to feel like I was nothing more than a vessel for a sick baby... a sick baby that in my mind had a 50/50 chance at life.
We got back to MFM and I was beginning to hate the idea of being pregnant. I'd been having some moments where termination was what I wanted, what was best. This was one of these times... when the dr came to see me, I let it all out and gave her the impression I was very sure I wanted to end it but didn't know how to tell my partner. She said she wanted to speak with us both, and make sure we are both aware of how serious this situation it is, and that either decision would be supported. I asked her about termination, what would be involved, and that was enough to shock me. I asked about induction and whether I could be free to wait more than an hour or so before beginning the drip if labour didn't start soon after AROM and she assured me they are willing to work with me, and aren't there to demand things or try to overly control a situation that has to be somewhat controlled.
I started to feel a little better but promised to come back the next day to chat with them and my partner. And make a final decision, I had 3 days to decide to keep the pregnancy or not, which is nowhere near enough time, and we were literally in the dark when it came to baby's condition, whether he was 'fixable' or not, we were asked to make an incredibly difficult decision with half the information, and bugger all time but it was all we had. I was devastated.
I got picked up and we started talking about our situation, that there are heart problems, and then there are heart problems... his is as severe as you can get basically, it's not just a plumbing issue.

We got home and some more, we were utterly heartbroken. We ended up going to bed very early, and I cried myself to sleep. As I saw it, I would either guarantee I was a mother of a dead baby, or a mother or a sick baby who could die, or a mother or a sick baby who can still lead a relatively normal life. I kept going through my head what the termination would be like, and the thought of them taking away my tiny immature baby, who I allowed to take his last breath in my presence, possibly attempting to cry before dying, as a result of MY decision. It broke me, I've never cried so hard in my life, of course I couldn't say this but my partner held me tight as I cried. I didn't think letting my baby die was the right choice, whatever faced us couldn't be as bad as me willingly killing my baby... no matter how sick he was. The sadness I felt was as heartbreaking as actually losing a baby, I certainly grieved for a healthy baby I had been expecting prior to the scan.

I was able to verbalise some of what I was feeling the next morning over coffee, he agreed, to terminate a baby that might cry and die, was like murder, it was killing our baby and we couldn't see how it was an ok decision to make.

The next day we arrived early, and met with the team again. This time we talked things through and came to the decision that although we knew we were facing an incredibly difficult time ahead, and knowing our baby was in for multiple surgeries, with no way of knowing if he would be ok. We know we will be relocating interstate for at the very least a few weeks to a few months. Our family life will be very much disturbed, we don't know when for anything, but we know that we want to give our baby the best chance at life, we wont be able to live with ourselves if we don't.
The cardiac nurse came in and gave us a run down of how the transfers will happen, what charities are available to us, and that accommodation will be subsidised. I know that if baby has to be flown straight away, its likely I will be able to go with him, and if I'm not well enough my partner will. They will fly two people so I could bring my mum if my partner has to stay with the kids before driving them over. Either way, we're not alone in this, it's just working out the logistics of this and it depends heavily on his condition during the pregnancy and immediately after birth. I'm not giving up hope he is stable and can go home with us and we wait for the surgery to be scheduled later rather than sooner.

So where we are at now, I got a phone call with the remaining amnio results, and everything came back normal. It is a huge relief. I'm 22 weeks and 5 days, and I am looking forward to continuing being pregnant, seeing my belly grow and to love this little baby however long we are blessed with him. I am crocheting him a little blanket to keep with him when he has his surgeries, hoping it's later rather than sooner.
I have another antenatal on Tuesday, I have requested to have regular appointments even if it's a quick scan to see baby is doing ok at that time. I will need all the reassurance I can get.

I am so very scared for my baby, and for his future. I have so many worries and questions nobody can answer. However, I have hope. Hope that he will be fine and fight like a warrior through whatever difficulties he faces. I love him so very much already, I already cannot imagine life without him.