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Neave’s birth (Part 1 – the pregnancy)

Posted on: November 16, 2011

Okay, so here comes the next installment of my childbirth novel! For other installments, see here. I’ve also written a much more brief account of my pregnancy with Neave here.

You would think that after two rocky pregnancies and two premature births, I would have been done with the whole baby thing. Certainly, I was very put off ever having another baby in the first few days, weeks and months after Molly was born. It was all so scary and traumatic. I never wanted to go through it again. After two experiences with Obstetric Cholestasis (a condition caused by pregnancy hormones interfering with the liver’s ability to process bile acids, which can cause stillbirth, particular after 37 weeks gestation), I was sure there would be no avoiding it in future pregnancies. I was also very worried by the fact that I seemed to have a much more severe case of it the second time around, but with no warning symptoms until it was too late. If I were to do it again, surely it would be even worse?

Added to this, I also had a hard time getting over the guilt and grief that surrounded Molly’s birth. I felt I had let her down. Even after she came home, and I became super busy looking after a toddler and a premmie baby, I still had these nagging feelings of failure. So I started to do some research online, and I found this wonderful site, OC Support UK. The site includes a wealth of information, including forums, birth stories, and opportunities to become involved in research. I started to learn more about the disease, and I slowly began to come to terms with what had happened to me. More importantly, I also learnt that any future pregnancies were not necessarily doomed: some women with OC have gone on to have healthy pregnancies in future; and most of the women who have developed OC again have had healthy, almost-full-term-babies, through the help of their doctors and an appropriate management plan. I was stunned at how much more aware of this disease people seemed to be in the UK. Here in Australia, even my obstetricians had seemed fairly clueless about what I should be doing in my second pregnancy, when I told them of my history with OC. They definitely should not have told me to wait for the first sign of an itch before acting.

Anyway, armed with this new information, I started to consider the possibility of having another baby in the future. I had always wanted three children. For a while after Molly’s birth, I tried to reconcile myself with stopping at two. As I was told many, many times by others, I had my perfect, pigeon pair, who were both happy and healthy. What more could I want? However, maternal desire is a funny thing. I just didn’t feel done. Perhaps I could have felt complete with my perfect pair had I been the one controlling the decision not to have more. But as it was, it felt like my experience with OC was robbing me, not only of the last two, precious months of Molly’s pregnancy, but also of any future pregnancies. It sucked. Eventually, I resolved that, while I loved my two babies dearly, deep down I really wanted another one. But I was going to be smart about it.

So I immediately got pregnant again. Not smart. We weren’t ready. While we had recovered somewhat (but not completely) from Molly’s high-drama entrance to the world, we still had many, many things on our plate. Tom was studying at TAFE; life with two under two was tough enough – now we were expecting three under three; and not to mention the bills, bills bills! I’m sorry to say that the first few weeks of Neave’s existence were not exactly joyous. I think both of us felt trapped, scared, and pretty stupid for allowing ourselves to be in this situation. However, after a few weeks passed, and we had a little more time to get used to the idea, we both started to come around. It’s not that we didn’t want another baby, we just hadn’t planned on it being so soon. But, sometimes you just have to deal with what you’re given. So we sucked it up, and tried to stop feeling sorry for ourselves. We started to share our news with family and friends. Of course, we got a lot of What the????  responses, but mostly people were supportive and understanding.

I didn’t waste any time making an appointment with my GP: I had to get her onside to agree to let me have tests. Lots and lots of tests. This was the most important lesson I learnt from Jennifer and OC Support UK: I needed to get baseline Bile Acids Test (BAT) and Liver Function Tests (LFT) done at 12 weeks so that we would know what was ‘normal’ for me. Then I would need to get them done every four weeks, until I reached 26 weeks of pregnancy, when it would become fortnightly. If I made it to 36 weeks, I’d then be having the tests weekly. This was the ‘management plan’ that I should have followed when I was pregnant with Molly, but didn’t because I was told there was no need. How different things might have been. The horrible thing about the BAT is that it is a fasting test. So, on testing days, I would have to get the kids their breakfast and then take them with me to the pathologist. I’m not a good faster. I get all weak and wobbly and headachey, even when I’m not pregnant. So you can imagine how much fun it was to sit and wait for ages with two toddlers in the boring, boring pathology clinic while I was hungry and cranky. I had so many tests done that, by the time Neave was born, I had visible scars in the crease of each arm. They’ve faded now, though.

Two days after each blood sample was taken, I would ring my GP for the results. My poor GP must have been thoroughly sick of me by the end of it all. But she was very patient and obliging. She printed me multiple copies of the blood test referral she wrote so that I didn’t have to visit her every time I needed to get a test done. She also read out every number on the results so that I could write it down and then plot it on the table I was keeping. Yes, I was that anal. To me, those numbers were of vital importance. As long as they all stayed within normal range, I was happy. My baby had time. I was completely terrified that the bile acid levels in my blood would suddenly jump without me being any the wiser, as happened in my pregnancy with Molly. I was also convinced that this would happen earlier than last time, at around the 28 week mark, because it made sense to me that it would happen earlier each time (with Tiernan I had symptoms from about 33 weeks, and with Molly it was 31). I desperately wanted to avoid having another baby spend time in the NICU.

You can see how all of this would have made me feel like a bit of a nervous wreck throughout most of the pregnancy. I decided not to do any teaching from the beginning of 2010, when I was about four months pregnant, because I wanted to be as stress-free as possible. In between blood tests, I tried not to think too much about what my next results would be. I tried to think positive thoughts, and visualise a big, healthy baby at the end of it all. But it was hard.

In between my multiple blood donations, I started visiting the high-risk clinic at Nepean hospital every three weeks from about 18 weeks on. At each visit I would insist on seeing my actual obstetrician (and not the registrars), because I wanted to make a plan with him about what we would do if any of my blood test results started to climb. He didn’t take too kindly to my extensive research and lists of questions. He just wanted me to play dumb and let him make all of the decisions. To him, I was just another meddling, pregnant woman. How dare I try to have a say in what happened to my body, and what actions should be taken to try to prevent another premature baby? Sometimes I felt like I was talking to a robot. A baby-delivering robot who had no empathy or basic human feeling. He didn’t care how or when my baby was born, just as long as it was alive. Then we could be scratched off his list, and we would become someone else’s problem: either the NICU or the maternity ward midwives. Being in the public system, I really didn’t have much choice but to try to work with this guy. So I plied him with questions and tried to cobble together a basic ‘plan’, which went along the lines of: I could continue getting blood tests and collecting results and bringing them to him; if things started to change he would review the situation at my next appointment; I wasn’t to call the hospital with results but if I was worried I could go to delivery suite; as soon as my levels went above the normal range, I would be admitted to hospital and started on medication to try to reduce it; if I stabilised I would be sent home, on medication, and induction would be booked for 36 or 37 weeks; if I didn’t stabilise, my baby would be born by induction or caesarean. At the end of each appointment he would try to reassure me by smiling and saying, “You know, you may not get cholestasis this time around.” And I would think to myself, Don’t worry, I will.

28 weeks

And I did. At about 30 weeks, one of the enzymes tested by the BAT came back slightly (very slightly) high. The other important enzyme had also climbed, but was just within normal range. I booked an emergency appointment with my obstetrician, arranged childcare for the kids, packed a hospital bag, and went to the appointment, expecting to be admitted and started on medication post-haste. However, my obstetrician was decidedly underwhelmed. He asked me to get a repeat test and come back in two weeks. No way. In two weeks, the thing could have sky-rocketed and I could have been itching like a dog with fleas. In two weeks it would be too late. So I told him I wasn’t happy with that suggestion. I wanted medication. He said he couldn’t give me medication because he couldn’t give me a diagnosis based on one only slightly high enzyme and no symptoms. I explained to him (again) that I had no symptoms last time until it was too late. Couldn’t he give me medication prophylactically? He still wouldn’t budge. I was turning out to be a major thorn in his side. He deliberated for a few more minutes, and then suggested I see a gastroenterologist for a second opinion. I agreed. Driving home that afternoon, I felt so many different emotions. I was pretty upset and angry that I still wasn’t being taken seriously, although the appointment with the gastro gave me some hope; I was relieved to be going home to my family instead of being stuck in the hospital; but mostly, I felt drained. The anxiety and nervous tension of the last few months were starting to get to me. I just wanted it to be all over. I cried as I drove home.

So, a few days later I saw the gastro. I paid him $200, and I got my own way. He agreed with me that I would probably end up with OC again. He agreed with me that I would probably end up on medication for it at some point. He agreed with my obstetrician that there was no evidence that taking medication prophylactically would help at all. But he agreed to let me just go ahead and take the damn medication, anyway. At last.

Ursodeoxycholic Acid is not cheap. I think I paid about $100 for only a month’s worth of tablets. But the price was worth the peace of mind it gave me, let alone anything it may or may not have been doing for my stressed-out liver. Starting the medication marked a turning point in the pregnancy, I believe. Finally, something productive was being done, other than my ‘torture by needles’. Finally, someone had listened to me and acknowledged my feelings and my input into the decisions that were made about my body. I felt warm, fuzzy feelings towards my gastro guy for quite a while. I started to relax a little and enjoy being pregnant for the first time in the entire pregnancy. The whole thing had been one emotional rollercoaster ride up until that point. But now I knew that I was doing everything possible, and that I would just have to wait and see what happened. It was very freeing. Tom and I started to get a bit more serious about the ‘name game’. We had a few boy’s names to choose from that we both liked, but we were struggling with girl’s. I figured that meant the baby was probably a boy. It had worked that way with both Tiernan and Molly.

Things continued to go well until 34 weeks, when I was surprised to discover another sharp climb in my blood results. This time, my obstetrician wanted to admit me and monitor the situation for a few days. I knew this meant that I would probably be having my baby within days. I had already packed a bag for myself and a bag for the baby. Optimistically, I left the baby bag at home. I figured Tom could bring it to me when the time came anyway. Once in hospital, my obstetrician and gastro decided to increase my medication to the maximum dose, and take daily blood tests to monitor my bile acids. I also had twice-daily foetal monitoring, where I was strapped up to the trace machine and told to press the button whenever I felt my baby move. Each session lasted about half an hour, and it was pretty uncomfortable. However, it was nice being able to just sit and listen to my baby’s strong heartbeat and know that, despite everything I was going through, so far everything was great with her (I didn’t know it was a her, but it’s easier to just say ‘her’). It was bonding time. All around me, in the antenatal ward, woman were wandering around in various stages of pregnancy, and even labour. I felt almost certain that I would be one of them very soon. I resigned myself to having a 34-weeker. Not full term, but much, much better than a 31-weeker. I felt no guilt this time – I knew I had fought and fought the hardest I could, and now I just had to let things be. At least a 34-weeker should, theoretically, have a much shorter stay in the NICU, and have a much easier time of feeding. So, all going well, with no complications or infections, perhaps we could have our little one home in two weeks? Not great, but not as bad as last time. I was nervous, but at peace with the situation.

So imagine my delight when, after two days in hospital, both my doctors came to tell me that while my bile acids were high, they were fairly stable, and that I could go home tomorrow after one more test. I couldn’t believe it. This had never happened before – I had never left hospital still pregnant. I am going to throw caution to the wind and attribute this marvelous fact to the medication I had already been taking for some weeks. Of course, in the science world, this can’t be proven because 999 other pregnant women with OC didn’t also take part in a trial with placebos vs medication vs no intervention at all. But, when you compare my three experiences with OC, the best outcome I got was when I started taking ursodeoxycholic acid before I was officially diagnosed, with the dose increased once my diagnosis was confirmed. There is no doubt in my mind. I will forever be grateful to my gastroenterologist for taking this chance with me. And I’m thankful to my obstetrician for at least referring me to my gastro when he didn’t know what else to do with me. I feel a little sorry for him, even though his attitude sucked. I wasa pain in the arse. But I was right. At this point I should mention that I would never have had the courage to do all of this wheeling and dealing with so many doctors and midwives if it weren’t for the support of Tom, my Mum, Jennifer from OC Support UK, and also the benefit of my previous pregnancy and birth experiences. This time around I knew what I wanted, I knew what I was entitled to, and I knew how to get it.

I went home the next day, with a tentative induction booking for one week later, at 35 weeks. In the meantime, I was to start weekly bile acid tests, and return to the hospital for foetal monitoring every two- to three-days. This was a serious inconvenience – poor Tiernan and Molly, who had been dragged from one waiting room to another for months now, were starting to get pretty fed up with it. Me too. But, it was necessary, and so much better than having to drag them to the NICU every day. So we did it, with lots of help from family and friends. Sometimes one or both of them would be minded, sometimes I would be met at the hospital and they would be taken for a walk while I was busy. And sometimes I had to do it alone. Despite being so happy to be still pregnant, this phase of the pregnancy was very, very exhausting. I was getting big and cumbersome, and I was spending lots of time running around after toddlers, wrestling toddlers into the car, entertaining toddlers in waiting rooms, as well as the usual tasks of feeding, cleaning, dressing and, you know, nurturing them. A hospital bed and a few days respite was starting to look rather inviting!

Things still looked good at 35 weeks, so my induction was postponed for another week. By now, I was starting to get a bit excited. 36 weeks was still a little too early for my liking, but it was a huge improvement on 31 weeks. It was exciting, but stressful too; every week, I would mentally prepare myself for having a baby on Friday, but then, after my Thursday appointment, I would have to mentally prepare myself for another week of being pregnant instead. It was pretty exhausting.

During the next week, three days before my induction was booked, I started to itch a little at night. Very, very mildly, but enough to make me a little concerned. I also felt a bit ‘icky’. A bit light-headed, vaguely nauseous. Nothing I could put my finger on, but just generally ‘off’. I decided to go down to the delivery suite to have my baby monitored again, and another blood test, for peace of mind. I waited until Tom was home from work, and then went down. Once there, the midwives were very kind and reassuring, and they hooked me up to the monitor, took my blood, and called an obstetrician for me. My baby was still there, as happy as ever, kicking away. It took a while for the on-call obstetrician to arrive, but eventually she did review me and my situation. She said everything seemed fine with the baby, but we wouldn’t really know more until we got the blood test results back the next day. She gave me a choice of being admitted, just in case, or I could go home if I wanted to. I felt reassured that my baby was okay for now, so I went home. That night I slept well, and there was no sign of any itching. The next day, I went to my usual Thursday appointment. My obstetrician was away for the Easter long weekend, so I was reviewed by a registrar. She told me that my results were actually slightly lower than they had been the week before. I was pretty surprised, but pleased. I tentatively asked whether that meant my induction could be put off for another week? She thought about it for a minute and then said she would have to check with another obstetrician since my one wasn’t available. I waited for about half an hour. When she returned, she said the doctor she had consulted had seen no reason not to wait another week. Wow! Once again, my baby was going to get another week. 37 weeks. I had never been that pregnant before. Technically, that’s full term.

This was fantastic news, but I felt quite ambivalent about it. One of the little ‘hang ups’ I had over both Tiernan and Molly’s births was that neither of them were spontaneous or even the slightest bit natural. During this pregnancy, even through all of the complications, I think I still held a vague hope that I would somehow, miraculously get to experience this. However, driving home from the hospital again, still pregnant again, I finally was honest enough with myself to admit that I was so damn sick of being pregnant that I really didn’t mind being induced early. Not just physically, but mentally too. I was really, really ready to have this baby now. So I couldn’t help being a little disappointed that it wasn’t going to be over tomorrow. That I would have to wait another week. It may seem odd that I felt this way, since I was the one who asked to wait another week. But I did it for my baby, not for me. I knew that one more week would make a huge difference to her. Once again, we called everyone and told them no baby for another week. Once again, I played the role of exhausted-pregnant-Mum. But at least it was Easter, so there were more people around to help.

At my next antenatal appointment, my obstetrician asked my why on earth I was still here? So I told him. He didn’t seem too happy. He told me that this was it – Friday 16th April was the day. No more delays. In all of the papers I had read about OC, there was some debate about whether 37 or 38 weeks should be considered the maximum ‘safe’ gestation before induction. As mentioned above, OC is associated with a higher risk of stillbirth after 37 weeks, and no amount of foetal monitoring or ultrasounds can predict which babies will live, and which won’t. That is why doctors prefer to induce early. Despite the evidence that the risk doesn’t seem to increase until after 37 weeks, my obstetrician was of the opinion that inducing at 36 weeks was better. I can see that he wanted to be safe rather than sorry, but I was worried about the risk of inducing a little bit too early. While Tiernan, who was born at 36 weeks, was fine in the end, it was pretty obvious that he really wasn’t ready to be born. For this reason, a 37-week induction sat much better with me. So I guess we were lucky that my obstetrician went away for Easter, because I’m sure he would have insisted on 36 weeks had he been there.

Anyway, a slight rise in my bile acids that week only cemented the deal. I knew not to argue for more time. I didn’t want to anyway, I was done. It was time to have this baby!

2 Responses to "Neave’s birth (Part 1 – the pregnancy)"

Been dying to hear about Neave’s birth. Great to get the update so far.

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