My Story: ‘There’s Something Unusual About Your Baby’s Brain’ (Part 2)

This is a 3-part series. Part 1 of ‘There’s Something Unusual About Your Baby’s Brain’ can be found here.

March 11th, 2017

25 Weeks

So today, our little boy is 25 weeks. His name is Oliver Jackson, known by family and friends as Oli.

When we were given our news 5 weeks ago, I hadn’t imagined that we would make it to this point. If we make it just another 5 weeks, he’ll be 30 weeks. I feel like I’ve spent most of this pregnancy wishing time away. “I’ll feel happier & more relaxed once I get to 12 weeks/20 weeks/24 weeks.” That being said, I have enjoyed elements of being pregnant; such as feeling Oli kick.

I don’t want to wish away whatever precious time we have left. I want to enjoy every minute.

 

March 13th, 2017

The Hardest Lesson

When I first found out I was pregnant, 2 years ago, I believed with a child-like naivety that those 2 pink lines meant we would have a baby 9 months from then. The day we lost that pregnancy, I knew that things would never be the same again. I would never be the same again. It had been a long journey up to that point and it then felt as though we were even further back than square 1.
6 months later, I found out I was pregnant again. On the same day, I believed I was miscarrying. This turned out not to be the case but I knew something wasn’t right. After lots of hospital visits and tests, we found out that it was an ectopic pregnancy. Given the option to have methotrexate or wait to see if my body would miscarry naturally, I chose to wait and see. This came at a price. One of my Fallopian tubes ruptured, landing me in hospital for surgery to remove the pregnancy and tube. However, by waiting and not taking medication, I had peace of mind. There was nothing else I could have done. On another occasion, I wouldn’t be lucky enough to have the choice. I couldn’t afford to lose my other Fallopian tube.
This time (almost exactly a year later) when we found out I was pregnant again, there was no naivety. I cried over my positive pregnancy test while my husband looked on anxiously. Tears of relief that we had been blessed with another chance; tears of worry that it would all be lost again. If these misfortunes could occur previously, they could happen again. This is why we wanted to wait as long as possible before sharing our pregnancy news, to be certain that everything was alright. Except it wasn’t.
Likelihood of Miscarriage – around 20% (depending on which statistics you look at)

Likelihood of Ectopic pregnancy – 1%

Likelihood of our current diagnosis – 0.1%

Likelihood of all 3 in succession – I’ll let someone else do the math here.
The hardest lesson I’ve learned is to expect nothing.

 

baby's brain

 

March 15th, 2017

Enjoying life 

So now that I’ve stopped counting down every day, I have truly begun to appreciate what I have. I have given myself the time to appreciate the life inside me.

Each morning, I wait for the first kicks of the day and greet Oli with a cheery “Good morning!” I talk to him throughout the day and respond to him with a gentle dig whenever I feel him move. Each evening, my husband and I read our boy a bedtime story then bid him goodnight. I fall asleep with a protective hand on my bump and a promise to my son that I’ll do what I can to keep him safe for another day.

 

 

March 17th, 2017

Is it really me?

Being back at work and making time to socialise sometimes distracts me enough to make me feel normal again. It’s as if I’ve read this story but it’s not really happening to me.

I mostly remember how real it all is when we have to go to hospital. At other times, it doesn’t feel real. I forget about the possibility of going into labour at any time and about the difficulties that lie ahead for us.

But it’s nice. Nice to have friends and family who make me feel like me.

 

March 24th, 2017

Mother’s Day

With Mother’s Day fast approaching, I can’t help but think of those who don’t have their children.

Everyone thinks of their own mothers, of course. Those who have lost their mums often think of them and celebrate in their absence. Good friends of these people remember and provide support on difficult days of the year such as these.

But how many people really stop to think of those “invisible mothers”? The ones who didn’t have the chance to meet their child, the ones whose child had slipped away before they got the chance to hold them, the ones who got to spend just a few short moments with their child before they were gone, the ones who had to say goodbye too soon. It’s always too soon. No child should die before their parent.

And what about those would-be mothers, who long for a child? Who cry each month when they’re not pregnant, yet again, with no obvious reason as to why it’s not happening for them. Those women who see all of their friends get pregnant and often have to listen to them complaining of the aches and pains that they long for.

Regardless of circumstances, all mothers deserve to be celebrated.

 

 

March 31st, 2017

A glimmer of hope

So today we got the results of our MRI scan. I was very anxious leading up to this appointment because I felt sure they would give us the worse of the potential diagnoses…that the fluid was simply taking up the space of a brain that didn’t grow.

Instead, we were told that most of Oli’s major brain structures appear to be present. Squashed by the fluid, but present.

We’re meeting with a neonatologist/neurosurgeon in a fortnight to discuss putting in a shunt, to drain the fluid, once Oli is born.

“There’s no reason why he shouldn’t survive to term,” they told us. Everything else about him is normal. He’s very active, he seems to be swallowing, his heart is perfect. The consultant was very clear that Oli will likely be very disabled, as a result of the brain damage. But he’s likely to live. That’s what matters.

The plan is to induce at 36-37 weeks. That’s only 8 weeks away…

In the meantime, I have to return to hospital this week for a glucose test, as they think I may have gestational diabetes. I’m not concerned about this. It’s the least of my worries.

 

 

April 1st, 2017

28 weeks

So today we’ve made it to 28 weeks. This means that should the worst happen, Oli should be eligible to have his organs donated. This would give us a little comfort at a very difficult time.

28 weeks is also the beginning of the third trimester. I wasn’t sure if we’d ever make it this far but we’re here. For most people, that means they have three months to go. For us, it’s only two.

We’ll keep doing what we’re doing, appreciating every moment with our boy. We’re still praying for him and are so thankful for everyone else’s prayers too. They must be working.

 

April 15th, 2017

30 weeks

Another milestone, into 30+ weeks now…

There hasn’t been much to report in the last couple of weeks. My glucose test came back negative for gestational diabetes. That’s a relief. Not because it’s a massive problem, just because it would have been another issue on top of what we’re already dealing with. I haven’t been keeping very well over the last week or so but I’m feeling much better now so hopefully that’s the end of it.

Yesterday, we had another hospital appointment. Unfortunately, circumstances meant that we couldn’t see the neurosurgeon or the chaplain but we are hoping to meet them at our next appointment, in a fortnight, instead. The scan we had, though, shows that the fluid in Oli’s brain has increased again by a little; but it appears to be increasing in proportion to his growth. As usual, everything else about him is perfect.

Time is passing so quickly now. There are only 4 weeks left until I finish work. Only six or seven weeks until Oli is born. That’s a bit scary.

 

April 17th, 2017

Are you ready?

I’ve been asked this quite a few times now, particularly as it’s getting closer to the time when our son will be born.

Where do I start? Honestly, no. How do you prepare for the unknown? I’ll never be ready for what might happen. How do you prepare to potentially lose your child?

But that’s not what they mean. When people ask “are you ready?” they really mean “do you have everything ready at home for the arrival of a newborn?”

No. We don’t. We only have what we already had before our 20-week scan. Since then, the only thing we bought was Oli’s first outfit, because we knew what we wanted it to be. It’s too hard to fill our house with more baby things. To pretend that everything will be ok, when there’s so much uncertainty.

In any case, even if our son is eventually well enough to come home, he’ll be in hospital for long enough, prior to this, for us to get organised.

I can’t allow myself to believe that everything will be ok. I do hope and pray that our son will make it but to allow myself to really believe that would only make it so much harder if/when we lose him.

 

 

You can read the first part of Ruth’s diary, ‘There’s Something Unusual About Your Baby’s Brain’, here and the final part here.

 

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Read also: Pregnancy Calendar: First Trimester

Credit: Tumblr

Not sure what to expect for your first trimester? Read our guide here.

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