Update 15 - 32 weeks

I haven't written anything for quite a while because so much has been going on...
Firstly, I am now 32+4 and baby is growing beautifully, my pregnancy has gone quite smoothly considering.

So what has been happening since my last update at something like 15 weeks? I'll be writing as things come to me.. after all this is just a public diary of sorts... this will get long....

I have already mentioned I have Crohn's disease, and had a major flare not long after the birth of baby R. As a result of that flare I ended up in and out of hospital. I lost an extreme amount of weight (I was around 70kg and was 50kg by the end) I lost muscle and I was severely depressed and traumatised from the complete lack of control over what was going on with my body and medical interventions. I was officially 'in remission' as of December but I still had some ulceration in June, then one of my medications dosage was increased.
I was on remicade/infliximab infusions bi-monthly and that was what kept me well. For a while.
A few months after starting the infusions I started getting some pain in some joints, beginning with my hands and wrists. I conceived some time in early June (according to my ultrasound), and I was terrified of being pregnant so soon after being unwell...

 Slowly over a few months the joint pain got worse and included not only my hands but my knees, elbows, feet, jaw... literally every joint in my body. At 10 weeks I started getting inflammation elsewhere, pleurisy of all things even though I had not had any kind of respiratory illness but nobody could tell me what was going on.... my GI said it could be just another 'wonderful' part of my disease...

At 12 weeks I had enough, I was unable to move so I begged my doctor for a referral to someone could help me and he referred me to the rheumatologists. He did and also prescribed sulfasalazine which he thought may help with the joint pain.

I finally got to see the rheumatologists when I was 15 weeks, they weren't sure what was going on but suspected either rheumatoid arthritis or drug induced lupus... I had so many blood tests it was ridiculous. I was seeing my GI every month and my appointments with the rheumatologists were 2 weeks apart. We needed to know what was going on because as my pregnancy progressed, my joints were loosening and the pain was unbearable.

I was then referred to the immunologists, thinking it was most likely to be drug induced lupus since the symptoms started not too long after I began the infusions. I was also getting a rash every time I was exposed to sunlight and my fingers would turn purple at the tips when I got cold. Common lupus symptoms. I was prescribed a lupus/anti-malarial drug called Plaquenil... I was wary of going on yet another drug especially when this one was not usually recommended for pregnancy (but not unsafe) but I had no other choice... I was losing my mind and suffering greatly. Steroids weren't yet an option because we needed to see what my bloods were doing.

When my bloods came back it was confirmed I had drug induced lupus and needed to stop the remicade infusions, I had very high levels of antibodies and it was destroying my joints and the pleurisy was so bad that sometimes I couldn't breathe properly. I, then, had to discuss with my GI what to do next... We decided the next option was another biologic/anti-TNF blocker, Humira injections. This drug isn't made with mouse and human proteins like remicade, only human so it's possible I won't have a reaction to that.

I had my morphology ultrasound at 20 weeks where we found out we are expecting another boy, much to my surprise because I was absolutely convinced I was having a girl. I did grieve for a bit, knowing that my daughter badly wanted a baby sister... however he was perfect! I had worried so much that I wouldn't be able to grow a healthy baby. My darling daughter is now ok with not getting a sister, i will probably go a little overboard with the girly things she likes because of it... she loves glitter, fairies and ponies as well as trucks, dirt and the stereotypical 'boy things'... we are a gender neutral house, they like what they like and we do not stop them from being kids.

At 22 weeks I saw the rheumatologist again and FINALLY I was given a steroid shot (depo-medrol, it is a slow release version so I wouldn't have to take the pills which do not agree with me) to stop the inflammation and give me some desperately needed relief. It was becoming obvious that 2 weeks after my infusions I would flare up, worse each time, and a few days before I was due for the infusion the symptoms would ease. The shot made a huge difference to the joint pain I was experiencing at the time, I could walk at night and use my hands again

So the infusion I would have had early December, I didn't have. I also, did not have the lupus flare up badly again!  On Christmas day I was out in the sun for a little while earlier in the day and before lunch time my joints mildly flared but the worst was the pleurisy.. I spent the entire day and that night struggling to breathe... it got to the point where S was worried.. I got a bit pale from breathing so shallowly... but I was getting just enough oxygen... only just... lying on the painful side was the only thing to give relief because my lung wouldn't scape so much against the inflammation.

At 29 weeks I had another ultrasound to monitor baby's growth, I had a low PAPP-A result early in my pregnancy and with Crohn's we wanted to make sure his growth was not being restricted. He certainly was not suffering in the slightest! 60th percentile and some parts were measuring around 35 weeks (his tubby little tummy) I know measurements are off/inaccurate but this was very reassuring. It also shut the OB up about growth restriction because my previous fundal height measurement was 2 weeks small... I didn't get worried because I had actually measured myself the same day and got a completely different measurement.. to me, he was spot on. In fact, the numbers (both around and fundus) were the same as baby R at exactly the same gestation. Part of me wonders if the Dr wasn't feeling properly or if he was trying to get a small measurement on purpose.. I never met him before and he said a few times how 'strong and healthy' I looked for someone with crohn's although he had only seen a few people over the years with it... he really lacked any knowledge on Crohn's...

At this point the doctors wanted to see me every fortnight. Much to my displeasure. I was really sick of seeing doctors all the time... I was feeling like a sick person and not a pregnant mother... my mental health really started to suffer... I started losing myself and wanted to sleep every moment my partner was home from work.
I saw the OB (yet another one, but he was much younger and had a better bedside manner) when I was 30 weeks, I told him it was certain I was going on Humira, I gave him the letter my GI wrote for them and then he started going on about needing to start going to the big hospital because the small local one I was at didn't have the technology to deal with complications very well and we would be immediately transferred if I was already at the local one... he spoke to the head OB which was the one saw at my first OB visit and I really didn't like him.. he agreed a transfer of my care was necessary they were afraid of the unknown...I said how on earth am I going to get all the way to the city in time because I labour fast, and once again induction at 39 weeks came up... I told him I don't like the idea of induction due to the very small but unacceptable risk of infection, especially when it's not fair that the reason is because the hospital is ill-equipped to deal with such issues (I'm calling BS because they do caesareans and ALL hospitals have to have something to deal with such issues.. otherwise why on earth are they having women go there to give birth??!?)... surprisingly his answer was 'then it would be better off if baby was born before going to the hospital'... I couldn't believe it, was he really saying to me to have baby at home???? He was aware I have had 2 unassisted births and knew what I was doing...

He said he would organise the transfer of my care, saying 'I hope to see you there' because he was transferring to that same hospital in February... but now that I am 32+4 and STILL haven't heard from the hospital (and honestly I haven't wanted to chase them when there is no need) Ireally don't feel it is necessary to travel over an hour for a 5-10 minute appointment where I can do all the same things myself at home... it has already been well established that my pregnancy and I are doing fine, my baby is growing beautifully...

So, where am I at now... I discussed with my GI last week what risks are there really with my Humira (which I started on the 2nd and I self inject every fortnight) and he said my baby is NOT at risk of complications (like breathing difficulties) as a result. I will be skipping the last shot prior to my due date so baby has less of the drug in his system but that's so we aren't quite as immune compromised. I do not have to worry like the OBs are, in fact he said they are acting on information that is 50 years old!! He couldn't believe it when I told him they were transferring my care to another hospital....
Humira is fine, and I am even encouraged to breastfeed as long as I want to while on it. My GI said if baby was born at home it is unlikely he would have issues, it is only really if we get an infection or if I tear badly I am at risk of developing fistulas/ abscesses...I am not expecting a severe tear...and if I tear I will obviously expect to be stitched up adequately.

So, with that information and listening to my instincts, I am not going to continue antenatal care at the city hospital, I'll probably go once or twice more at my local one (I will be calling them to let them know of my plan) or just go it unassisted again and call them if anything unusual pops up. I will be having baby at home with my mum and S present. I am so done with it all and it has severely affected my mental health, I have never been so depressed during pregnancy before... So far all the fear they have put on me has been without any actual evidence but due to their own ignorance... too bad for me if I was to go through with an induction when he's not ready and end up with a caesarean for failure to progress/infection... the potential complications are huge! Definitely not something I feel is acceptable to risk.

So that's is all my musings and an update for now.. I am hoping this pregnancy is more enjoyable now that I am backing away a bit... I have hated being pregnant so far as much as I despise saying that.. this is definitely my last baby (planning a tubal ligation) and I want it to be a positive experience... IF the universe decides I'm not to have a perfect pregnancy and birth from this point on, I am ok with that...I will do what I need to so that my baby is born healthy and thriving...

Namaste xo