Tuesday 7 October 2014

Sprout

Sprout (his name prior to being born) was nothing if not unexpected.  I was coming to terms with being in early menopause (a common problem for FX carriers like myself called FXPOI) when I found out I was pregnant.

Andrew and I had gone through the process of trying to figure out if we could have another baby, even going and talking to an IVF program.  I really wanted another baby, after growing up very isolated, with only my sister and mostly absent mother, the idea of a big family had always been a dream of mine.  But in addition to the huge financial cost, the likelihood of it working seemed in the negatives due to the tiny amount of eggs I was producing.  The FX diagnosis really has been a heart rending one on so many levels.

The news of the pregnancy was a double edged sword however.  There was a 50/50 chance it was a third FX baby.  Andrew and I briefly discussed if we would abort the baby if it had FX, came to no real conclusion and decided to book a CVS to find out before talking about it again.

I went through a very emotional process of trying to figure out how I was going to have the baby and ended up getting into the OB program at the RBWH.  I definitely didn't want to go through the same program I'd gone through for Merryn.  I am still very upset by what happened at her birth and the lack of support I had during that pregnancy.  Thankfully I got a wonderful and understanding female OB.

There was no one I could talk to about the emotional turmoil I was in.  Except for my sister my family don't talk to me anymore and there were no friends I could talk to.  The concept of having to abort the baby played on my mind constantly and I eventually decided there was no way I could do that.  I tried not to think about being pregnant at all because it was so hard to deal with.

At 11 weeks I had a CVS.  It was a very painful process that I'd not recommend to the squeamish.  It's like being stabbed in the stomache repeatedly by a crazy person, while being told to lie still.  They give you an anesthetic, but it only numbs the top layer of skin, so it's completely useless.

It was then a very long 2 weeks to wait for results.  My nerves were completely frayed when I got a phone call one day to say our baby boy was clear of any genetic defects.  The relief and joy was overwhelming.  I could finally focus on the baby and being pregnant!  We slowly started to tell a few people but after the emotions of the first trimester I found that very hard to do.

The rest of the pregnancy up to 8 months went really well.  I was full of energy and madly cleaning, organising and preparing for the new addition.  Everything seemed to be on track but I did start to have problems with my blood pressure.  I ended up being in and out of hospital a number of times, but I didn't develop Pre-eclampsia so we stayed on track for a natural birth.  Sprout was due on the 31st of December but I was hoping he'd come a little early as I was absolutely huge.  It wasn't to be though, Christmas Day passed and I was still huge and feeling decidedly over it.

Both Merryn and Connor had been a bit unwell in the week before Christmas and I started to feel a bit unwell myself.  I woke up on the 30th with feet and ankles red and swollen and a terrible headache.  I hobbled around all morning and called the hospital, but they seemed unconcerned so I stayed home.  As the afternoon went on the pain in my feet meant I could hardly stand up and I started getting chest pains.  Andrew decided enough was enough and took me to emergency.  It was 3 weeks before I came home again.

During the next 24 hours they did blood tests, ultrasounds, two CT scans (one with radiation injected into me and one where I had to inhail it into my lungs), a heart CT scan, and numerous other tests.  At the end of it all they had no idea what was going on, the swelling and redness was moving up my legs and they were telling me I needed to get the baby out.  I finally got to the point where I agreed.  I was feeling so dreadful I didn't actually think I could physically give birth if I went into labour.

The emergency cesarean didn't go well.  There was a problem putting in the epidural and they were only able to inject an initial dose that would last about 2 hours.  Since the average cesarean usually only takes 30-45 minutes, no one was worried.  Our baby boy was born 3.9kg and perfect.  He was rushed down to the Neonatal Unit to make sure he hadn't been effected by whatever was ailing me though, just to be sure.  In the meantime they tried to put me back together.  2 hours later the anesthetic was wearing off and they were still going.  I had lost 1.9 litres of blood and they couldn't get my uterus to contract and fit back inside my body.  I started vomiting on the table as I could feel everything.  Finally after 2 1/2 hours they wheeled me out.

Poor Andrew had been told nothing and was starting to worry.  Over the next 5 days things were pretty rocky for me.  The pain meds they had me on weren't working so I was in excruciating pain.  Finally after 2 days they fixed that and I was able to stand up, at which point I lost another litre of blood.  After the initial panic they decided it must have just pooled internally and I wasn't bleeding to death.  I had a swinging door of Doctors of all types visiting me and it wasn't until weeks later I figured out how bad things had really been.  I was just focused on my beautiful baby and didn't care about me.

About 6 hours before we were going to check out of hospital Sprout, now called Liam, developed a 38.4C temp.  I called the nurse and a few hours later he was down in the Neonatal Unit.  He stayed there for almost 2 weeks.  He was on oxygen because he couldn't keep his O2 levels high enough and he wore nothing but a nappy as his temp stayed high even with meds.  After numerous tests over the next few days it was a test using spinal fluid from a lumbar puncture that finally gave us all the answers.  Liam had an entero meningitis.

I must have got the enterovirus from the kids which my immune system couldn't handle.  When Liam was born he got it from me and it went into his spinal fluid.  We now have to monitor his hearing and have further hearing tests to do in a couple of months time.  He's a beautiful, happy 9 month old baby now, and other than a terrible sleeper (yep another one!) he's a delight.

It's Been A While

It's been a huge 18 months since I managed to get my head around writing on my blog.

Firstly the Doctor and tests were wrong, I wasn't going into early menopause.  Instead I unexpectedly got pregnant.  After months of trying to come to terms with the early menopause diagnosis it was a shock to say the least.  The stress was terrible.  I cried for nearly whole first trimester.  At week 11 I had a CVS done and at week 13 we got the results that the baby didn't have Fragile X.

Then there was the process of what to do with Connor.  The very limited testing that finally got done gave no results at all.  Connor now knows when someone is trying to test him and will often immediately refuse to participate in any meaningful way.  In the end it was recommended we hold him back for a year and once I finally got approval from the ECDP and his Kindy to re-enroll him for another year, that what we went with.

We went through an agonising process to get a drug trial started.  As of the end of January both Merryn and Connor on tiny doses of Sertraline and since July Connor also takes small doses of Minocycline.  I would say we've seen a big improvement with Connor, I'm not so sure about Merryn yet.

The babies birth at the end of December didn't go well and both of us nearly died in the process.  We were in hospital for 3 weeks and it took months for us to recover fully at home.  My depression started to spiral and we had to get help from Disability Services, who thankfully are absolutely wonderful (specifically the FECs staff at Nundah, I've heard not all the offices are as amazing).  I also talked to my counsellor and GP and started low doses of meds myself.  It helped hugely.

At the end of Term 1 I restarted the process of working out what to do about Connor starting prep next year.  As of today I am one more step away of getting him approval to go to a nearby special school.  It's been a nightmare, so if we get blocked at the final step I think I will cry.