Ok, so this post is REALLY late! I was planning for it to go up a month ago, not when I’m 33 weeks pregnant! Part of the reason it’s late is that so much has happened. So if you want to know all about my second trimester of pregnancy, grab a drink and a snack, because you’re gonna be here a while!
My Second Trimester: Health
In My First Trimester blog post, I included a section on my health at the end of the post. But, I think it makes more sense for me to put it at the beginning, for this one. To give you a background for my week-by-week accounts.
Unfortunately, my PoTS got even worse when I entered the second trimester. So much so, that I’m not able to safely stand up. Luckily, I have my original wheelchair upstairs and my active user chair downstairs and I’m going up and down the stairs on my bottom. I also developed Symphysis Pubis Dysfunction/Pelvic Girdle Pain (SPD/PGP). This is a common condition in pregnancy, and one I was more likely to develop because of my hEDS.
My Second Trimester: Weeks 14-15
The second half of week 14 saw my PoTS getting a lot worse. I phoned the autonomic nurses for advice, but wished I hadn’t. I was initially told that I was right to be concerned about my weight loss (eating is a big PoTS trigger for me at the moment, so I’m not able to eat much). But, I was offered no practical advice on how to improve this. Then I was told that if I sit up in increments in the mornings, I should be able to ‘walk around my day as usual’. As a result of this statement, I was left feeling guilty for needing to use my wheelchair. I was already sitting up in increments (when I’m finally able to sit up, which is no earlier than 11am). Despite explaining that my PoTS had got worse as I entered my second trimester, the nurse told me that ‘most people improve in the second trimester.’ Really not helpful! False hope was not what I needed.
In week 14 of my second trimester, the fluttery feelings got stronger and involved twitching sensations too.
Unfortunately, I had a bit of a mishap in week 15. I struggle to push my wheelchair outside, and can’t do this for any great distance. I had to do a short journey myself, so decided to take the other side of the pavement as it looked smoother and less angled. What I didn’t realise was that one of the curbs, while it looks flat, isn’t. I managed to catch one of my caster wheels and was thrown from my wheelchair. I landed on my hip, and my chair ended up on it’s side. Several people stopped to check I was ok and get me back into my chair, which was really nice of them. Being pregnant, this was particularly scary, but thankfully baby and I are both ok – just a few bumps, bruises and jarred joints at the time. Nothing lasting.
My Second Trimester: Weeks 16-17
In week 16, I had a consultant appointment, which went very well. She put in place referrals to the haematologist and cardiologist. The haematologist was to discuss safe modes of delivery for me, because of my easy bruising and potential bleeding risk. The cardiologist was (at least I thought at the time) to offer advice on PoTS management. We also got to hear baby’s heartbeat for the first time, which was an amazing experience.
Baby Velcro’s kicks are getting even stronger by this time. The fluttering feeling had stopped and the twitching was getting more pronounced.
In week 17, I had an appointment with the local midwife. Previously, I hadn’t felt like we’d got off on the right foot, but this appointment was completely different. The local midwife spotted my chronic illness cheat sheet and was very impressed. I think that earned me a lot of respect. I was in the appointment for over an hour. The local midwife spent more than half of this time trying to find baby’s heat beat. Baby Velcro was having none of it. Despite her best efforts, the local midwife wasn’t able to find a heart beat, so sent me to the Women’s Hospital for a ‘reassurance scan’. I didn’t actually have a scan, because the hospital midwife found baby’s heart beat in a matter of seconds.
I’ve spoken more about this in My Baby Is Awkward YouTube video. So instead of repeating myself, I’ll let you watch that.
Week 17 also saw the dreaded brown envelope fall onto the doormat, telling me that it’s time to reapply for Personal Independence Payment. I handled it better than I thought I would, but it’s still been a very stressful (and still ongoing) process. One I should never have been put through during pregnancy, particularly as the my previous experience caused PTSD symptoms to resurface.
My Second Trimester: Weeks 18-19
Thankfully, after a few eventful weeks, week 18 was a quite one. By this point, Baby Velcro was kicking every day. This has been very reassuring after the local midwife not being able to find a heartbeat.
The cat’s are being rather cute in relation to baby. In week 18, Mylo curled up on my lap and started nuzzling my tummy! He’s such a good boy.
In week 19, the date for my ‘urgent’ cardiology appointment came through, but it was 5 weeks away! It was also for the congenital heart disease clinic. So I phoned the consultant’s secretary to a. check I was being seen in the right clinic and b. ask if a cancellation appointment would be possible, seeing as I was unable to stand or eat more than a small piece of toast and 1/4 of a can of beans as a main meal. I was told that the appointment couldn’t be brought forward, because the consultant wanted tests done before seeing me. This left me feeling like I wasn’t being believed. After all, I have my PoTS diagnosis, so what more do they need to be able to advise me on management!? Having had the appointment (see week 23), this now makes more sense.
When I found out my cardiology appointment was going to be another 5 weeks away, I went to see my GP, concerned about my weight loss and difficulty with eating. I was concerned that I’d end up waiting, only to have nothing helpful suggested in terms of PoTS management and being able to get enough nutrition in me to support baby and me. My GP was in complete agreement and referred me to a dietician. We’d already added Complan into my daily routine, but the GP hoped that the dietician would be able to advise on the best nutritional drink for me, and how much I should be having.
My Second Trimester: Weeks 20-21
Week 20 of my second trimester, the half way mark, was a big week. The day we entered 20 weeks, I felt Baby Velcro kicking from the outside! My arm was resting on my stomach and all of a sudden it moved!
We had our 20 week anomaly scan and were able to find out that Baby Velcro is a girl! Initially, the midwife doing the sonograph (the same lady we had for our 12 week scan, which was lovely), wasn’t sure we’d be able to find out as Velcro was being so wiggly! Everything looked as it should at the scan, which is fantastic. Unfortunately, I became a little unwell during the scan. My PoTS started playing up – my heart rate soared (tachycardia) and I became hot, clammy, and nauseous verging on almost vomiting. It wasn’t a pleasant experience, but the midwife looked after me brilliantly.
Unfortunately, the obstetrician we saw after our scan was useless. The appointment was a complete waste of time. She said that because Baby Velcro was a good size, we didn’t need an additional scan. Despite her colleague writing in my notes that we’d have a 28 week growth scan because of the difficulties I’m having with eating because of my PoTS. So I had to push for this. Knowing what I do now (a story for my third trimester post), I’m very glad I did!
I raised concerns about SPD/PGP with the obstetrician, having experienced problems with shooting pain in my hips, pins and needles in my hips, aching legs, crunching inside my pelvis and sharp, shooting lower back pain. These were dismissed and I was just told to go to triage if the pain became unbearable and I felt I needed pain relief. Having spent a year coming off my medication to safely become pregnant, this was extremely frustrating for me. I felt the obstetrician should have done more to help make sure I don’t get to the point where I need medication for pain relief!
In addition, the obstetrician wasn’t concerned that I hadn’t been seen by the cardiologist, despite my PoTS leaving me unable to stand up safely, unable to eat a normal amount of food and unable to function before 11am.
In week 21 of my second trimester, Dan felt Baby Velcro kick for the first time! Exactly a week after I’d felt the first from-the-outside kick.
Unfortunately, week 21 also saw my SPD/PGP symptoms getting significantly worse. Less than a week after seeing the obstetrician, the hip, back and pelvic pain became so bad that it woke me up.
This was also the week that I had my 24 hour ECG test, which the cardiologist wanted before seeing me. The appointment came through just a few days before the test, making it a logistical nightmare to work out how to get me to the hospital to have the device fitted.
My Second Trimester: Weeks 22-23
The first day of week 22, my SPD/PGP was diagnosed by the GP. I’d hoped to see her sooner, but couldn’t because of the ECG appointment. The GP referred me to an obstetric physio for help managing my SPD/PGP symptoms.
Unfortunately, I also received a letter pushing back my post-pregnancy appointment with my migraine consultant by a month. He originally said we needed 8 weeks to see how my hormones settled, so made me an appointment 10 weeks postpartum to discuss going back onto my medication. But now, assuming Velcro is on time, that appointment is going to be 15 weeks postpartum! Not gonna lie, this makes me very nervous. My basilar type and hemiplegic migraine causes some difficult symptoms, including loss of consciousness, speech loss/difficulty and weakness down one side of my body.
How on earth am I going to manage an extra month without my migraine medication and a new born!?
I phoned up the hospital, hoping the appointment had been changed not knowing my circumstances, but that wasn’t the case and I was advised to ‘phone the nurses’ for advice if I needed it before the appointment. Ugh! I don’t need advice, I need my medication! The nurses won’t be able to advise me how to manage my photosensitivity safely with a new born. I need my medication to make sure that I’m less affected by problematic lighting so that I can keep my baby safe when out and about.
In week 22 of my second trimester, Dan and I saw the haematologist. Not all women with hEDS pose a bleeding risk, but I fall into the category that does. So we discussed the risks for me in terms of bleeding in terms of birth options. The haematologist was concerned that en epidural would pose too much risk because of my bleeding tendencies, so that’s not going to be an option for me. I’m not bothered by this – the idea of having a needle placed in my spine creeps me out! We also discussed post-birth bleeding and there are options to manage this should it be particularly heavy.
We were also advised by the haematologist that the spontaneous vessel rupture we’d been warned about just meant that the waters broke early. This was a big relief to us, because we’d been lead to believe that it meant it meant a blood vessel exploding. Turns out, that’s exactly what it means. The water’s breaking is a spontaneous membrane rupture. We found this distinction out at the 32 week appointment. So I am still at a higher risk of something exploding where it shouldn’t during a natural labour.
Week 23 was a busy and stressful week for me. I largely spent it chasing, planning and attending appointments.
Despite my GP sending a detailed letter to the dietician, explaining that I’m pregnant, detailing my weight over several weeks pregnant and giving my due date, the appointment arrived for the 21st March – the day before Velcro is due! So that appointment would’ve been as useful as a chocolate tea pot! Cue phone calls to the department to try and get an earlier appointment.
I had my cardiology appointment in week 23, as well as two additional tests on the day I saw the consultant (well, the registrar). Unfortunately, this appointment was unhelpful. I was told that I was being referred for PoTS management. The cardiologist had other ideas. They told me my heart is fine structurally, which is what I’d expected. It turns out this is why they wanted the tests – to check there were no structural problems that would make a natural labour dangerous. Which is great. I’m glad they’ve looked into this, but it hasn’t helped me manage my PoTS in the slightest. I was given no management suggestions other than the very obvious ‘more salt and water’, which I’ve been doing since before my PoTS diagnosis. I’d psyched myself up for not getting any help, but it’s still hard to deal with. Especially when you then find two letters from different obstetricians saying that they’re referring me for help managing my PoTS.
The whole process was really frustrating – wondering why I needed tests when I already have a diagnosis, having to wait so long to be seen when I had become unable to stand up safely and was struggling to eat and then receiving no help when I’d been told I was being seen for help with PoTS management. It also didn’t help that the testing department ‘lost’ the three page print out I sent in with my 24 hr ECG recording, stapled to the little booklet they give you to fill in with your symptoms. So they’d reported back that I didn’t experience any symptoms during the ECG, which couldn’t have been further from the truth!
Week 23 of my second trimester was also that time that I was interviewed for the Daily Mail’s article about the new migraine medication that’s proving very successful in trials – this was published the first day of week 24.
My Second Trimester: Weeks 24-25
The first day of week 24, saw the publication of the Daily Mail’s migraine article. I then received a phone call asking if I’d be interested in being interviewed for ITV news! Ten minutes later, I received a phone call saying “Forget ITV, the BBC are interested in the story and they’ve asked to interview you!” Now, I’m not sure whether that actually asked for me specifically, but it was nice to be made to feel special. The BBC interview was so much better for me, as they offered to come to the house. This meant I didn’t have to travel and was able to avoid studio lighting – much safer all round. It was all very exciting!
After the BBC camera man had left, I received a rather strange letter – an obstetric consultant appointment. This wouldn’t normally be strange, only I already have an obstetric consultant at a different hospital. It was an obstetric physio appointment I was waiting for! So, I phoned the hospital only to be told that they don’t have an obstetric physio in the local area so they assumed my GP’s referral was to see a consultant. Cue me frantically phoning my maternity hospital!
The midwife I spoke to at my maternity hospital was brilliant. I explained that I’d raised these at my 20 week appointment but nothing had been done, so my GP stepped in but there weren’t the management facilities locally. She listened to my concerns about managing pain to avoid needing pain relief and preventing damage to my body. The midwife managed to get me an urgent appointment to see one of the doctors in less than a week!
Unfortunately, I then had a lot of difficulty organising patient transport. So much so that I’ve had to raise a complaint with PALS, which is still ongoing. But I won’t bore you with the details of that – this post is long enough as it is!
The obstetrician I saw at my urgent appointment was lovely. It turns out that, with my drug allergies, there’s nothing that they could give me for pain relief. So I’m even more glad that I pushed for help with management, rather than leaving it. The obstetrician referred me to their physio. He also decided that it would be a good time for me to have a chat with the anaesthetist.
The anaesthetist was lovely, but I think we both had a bit of a dear-in-the-headlights moment. I wasn’t expecting anything other than getting SPD/PGP managed, so hadn’t had time to prepare. As it was an urgent appointment, Dan wasn’t with me as he hadn’t been able to request time off work. The anaesthetist also wasn’t prepared. I started off by apologising to her, because I felt so unprepared and her response was “Don’t worry, I’ve only just been handed your notes so we’re both in the same boat!” She was lovely! We spent some time having a general chat about my conditions and how they affect me, before agreeing to meet up again at my next appointment, with Dan, having both been able to go away and prepare.
The anaesthetist understood the need for continuity in my care, and said she’d make sure that it was her I saw for follow up chats. In a system where you never see a doctor more than once, I can’t express how grateful I am for this. I feel safer knowing that there is someone who understands me and my conditions.
The next day, I had my dietician appointment, having pushed for a cancellation. She was pleased with everything I’ve put in place myself and with the support of my GP. She was concerned with how much my PoTS is affecting me and my quality of life. The dietician suggested we switch nutritional drinks, going from Complan (which the GP and I had put in place) to Fortisip.
Week 25 was another week of making progress. I spoke to my GP about my migraine appointment and concerns about managing with a newborn and no migraine medication. I was hoping that she’d say we could add back some of the medication that I take for non-migraine reasons, but that helps with migraine – Amitriptyline, for example. A medication that I take for neuropathic pain related to my hEDS but that also helps with the management of migraine. My GP went one better and said that she’s happy to start anything I was on previously, as long as we observe the neurologist’s 8 week hormone settling time period. She wasn’t at all concerned about stepping on his toes and agreed that I can’t be left for longer than necessary without medication. That was a huge weight off my mind! It does still mean that Botox isn’t going to be something I can start back on straight away, as only my neurologist can prescribe it. But, we can certainly make my life a little easier, more manageable and comfortable.
Unfortunately, my wheelchair broke again in week 25. Yet again, problems with the caster wheel(s). At this point, I was terrified that my chair would be sent away AGAIN for another month to be fixed and I’d be left with an unsuitable wheelchair that I can’t push myself without a significant amount of pain and injury. You can read more about my previous experience of this in my Back To The Factory For My Wheelchair post. And experience I’ve been through twice already! Not something I was prepared to go through again while pregnant!
My Second Trimester: Weeks 26-27
In week 26, we had our 28 week growth scan – Christmas and the bank holidays meant that we had to come in earlier than usual. So I actually had two scans in my second trimester, rather than one. That day I had four appointments! The growth scan, the obstetrician, the anaesthetist and my first physio appointment! It was exhausting.
The growth scan went well, Baby Velcro was a little above average in size, which is great. We got to see her lips, nose and tongue really clearly on the scan!
We then made some more progress with working out what safe delivery options we have from talking to the obstetrician and anaesthetics.
My first physio appointment was really productive. I’m already doing a lot to help with my SPD/PGP, but the physio had some other good suggestions, including having lots of pillows around me, to keep my comfortable. She also explained how I can use heat to safely ease my back and hip pain, without exacerbating my PoTS.
Later in week 26, I got to try the new Twion T24 wheels. These are an upgraded version of the Twion M24, and include a cruise feature. I wasn’t impressed with the Twion T24 – you can read more about this in my power assist wheels comparison blog post.
Week 27 was the last week of my second trimester and was Christmas! So it was very uneventful in terms of medical appointments. We had a lovely, low key, time with family. Boxing Day, Dan was in full research mode, looking at all the different things we’ll need for baby’s arrival. We wanted to have a baby free Christmas, but I hadn’t quite expected Dan to be straight into researching so soon after Christmas day itself!
So, yeah! That was my second trimester. So much has happened that I’m surprised it hasn’t taken me longer to get this post written! I need to make a start on my third trimester post and add to it week by week. Otherwise our baby girl will be 5 years old before I manage to post it!
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