My Story: ‘There’s Something Unusual About Your Baby’s Brain’ (Part 3)

This is a 3-part series. Click for ‘There’s Something Unusual About Your Baby’s Brain’ Part 1 and Part 2.

 

April 22nd, 2017

31 weeks 

3 weeks left at work.
Five or six weeks until we meet our boy.

Only 2 more likely hospital appointments before a decision is made about when it will be best for Oli to be born.

The more time passes, the more anxious I become. Oli has begun to feature in a number of strange dreams. I’m looking forward to my next counselling session, next week, as I always feel a little calmer after meeting with my counsellor and talking things through.

 

April 28th, 2017

32 Week Appointment

So today’s appointment has brought us more than a glimmer of hope.

The consultant scanned us, as usual, and found the same as always – the fluid has increased a little but everything else about Oli’s growth is good.

We then met with a neonatologist (baby doctor) about expectations following the birth of our little boy. When we asked about organ donation, we were told that we were highly unlikely to need that information (although she would find out for us). They expect him to live. That gave me a lump in my throat just hearing that.

We were told that they’d hope to do a C-section at 38 weeks. A section because his head is large and at 38 weeks because by that point, he will have the best chance of breathing on his own. It is yet to be decided if this will happen in Dundee or Glasgow but we’re meeting a team (including the neurosurgeon) in 2 weeks to formulate a plan. Surgery will ideally take place a couple of days after Oli is born and he’ll need to spend some time in the Neonatal Unit. There’s a good chance he’ll breathe on his own. He may or may not feed; but if he doesn’t, they will show us how to tube-feed him. If all goes well with surgery and recovery, we could have our boy home just a couple of weeks after he’s born. They will not know the extent of his disabilities until a little later, when babies usually reach certain milestones.

This is a big change for us. From believing that our boy had little chance of surviving to now being told that he’s likely to not only survive, but to be allowed home reasonably soon after he’s born. It’s hard to change our mindset and accept these changes in expectation. We are so used to protecting ourselves from disappointment by expecting the worst-case scenario.

It makes me so thankful for all of the prayers of our friends and family and for everything the hospital has done, so far, to support us.

Where there is life, there is hope.

 

Torn

Having had some time to reflect on yesterday’s news, it’s left me feeling torn. Torn between self-preservation and belief.

Is it better to preserve myself, by continuing to hope but never really believing that our boy might make it? Or is it better to believe the probabilities we’ve been given and leave myself open to being badly hurt and disappointed.

What we’ve been told are only probabilities, not promises. There is still so much that could go wrong. At some point, I need to leave the self-preservation behind, to do what’s right for Oli and be prepared, in case things go well. The problem is: I’m not sure when I’ll be ready to do that.

 

May 12th, 2017

34 Week Appointment

Unbelievably, today has brought us better news yet again.

According to our scan today, the fluid in Oli’s brain has not increased more and his head is now measuring within normal parameters for his gestation. He has significantly more brain tissue than he had when the MRI scan was done and in previous ultrasound scans. The neurosurgeon said that he would hope he doesn’t need surgery; this problem may sort itself and never need intervention. Oli may not even need special care when he’s born.

So we’ve been booked in for a C-section at around 38-weeks and we’ll need to wait and see what his condition is like once he’s born. If he doesn’t need any special care, he may get out of hospital within days.

It’s hard for us to believe such positive news but we keep hoping and praying that things really are finally looking better.

 

May 26th, 2017

36 Week Appointment

Today’s appointment has confirmed what we were told a fortnight ago. Oli’s brain tissue has continued to grow and the size of his head is no longer much larger than normal for his gestation.

We got to see around the neonatal unit today, in case Oli needs to spend any time there. I feel better, having seen round, although am hopeful that he may not need to be in the unit at all.

So there are only around two weeks left until my section … two weeks of swollen fingers and feet, two weeks of heartburn, two weeks of not seeing my feet. More than all of that – two weeks of feeling our little boy kicking, rolling and hiccupping inside of me. That’s what I’ll miss.

I’m cautiously looking forward to Oli being born. I’m hoping it will be even more exciting to see him kick, roll and hiccup once he’s born. That being said, I am of course apprehensive about the big day.

 

 

June 4th, 2017

Happy Birthday

I was booked in for a C-section on 9th June, that’s when we expected Oli to arrive. However, our little monkey had his own ideas and decided to make an appearance a week early!

In the future, when my hands are not so full of this little one, I may detail the events of that day; but for now, suffice to say that we were mightily relieved to hear Oli cry as soon as he was born and he’s made a start on trying to feed.

We’re feeling blessed to have Oli with us and believe that God has smiled upon us, giving our boy the best start we could hope for.

ruth-journey-3

 

June 7th, 2017

Home at last

So today, after 5 days in hospital, Oli and I were allowed to go home.

The hospital staff were all so lovely. They couldn’t be more helpful and they made my stay pleasant just with their eagerness to actually get to know me and their smiles every day. (Even when I was a difficult patient who couldn’t made it one foot from my bed into a wheelchair without almost fainting, they were understanding and helpful).

It’s so surreal. A day I could only dream of. And like trying to merge two different worlds: one where I’m at home with my husband – living our lives, no baby; and one where I’ve spent my days in hospital, with my days revolving around looking after a baby.

I heard that some new mothers get a bit weepy a few days after having a baby, they cry over tiny things that shouldn’t matter. Did this happen to me? No. But when I got home, the floodgates opened. Not because something was wrong but because it was all so right. There I was, on my couch in my living room, holding our newborn. The same newborn that I’d spent almost every minute of the last 5 days with. The day I thought I’d never have was here. The force of the emotion really took me by surprise but I’m glad that my tears were happy tears. How could they not be? Our little boy was predicted not to make it and here he is.

 

 

June 10th, 2017

A life worth living – part 2

So near the beginning of this journey, I wrote a blog post with the title “A life worth living?” For those who may not have read it, the point was simply that the decision for us not to terminate was an easy one. We didn’t feel that we had the right to make that decision and believed that even if our boy was disabled, his life would be worthwhile.

So the thought returns to me again … is Oliver’s life worth living? Or would he be better off not existing, as he is now?

Anyone who has met our son will tell you that he is just like any other baby (and healthier than some born at the same gestation). He breathes on his own, he feeds without support, he cries, sleeps and keeps us up at night. He has brought so much joy not only to us but to our friends and family. He has also brought hope. Hope in seemingly hopeless situations.

I can only hope that someone would look at our story and think twice before making a decision to terminate a pregnancy based on a dire prognosis.

 

Read the first and second parts of Ruth’s story.

 

We thank contributor Ruth Hannah for sharing her story with Makchic. Those who wish to follow her journey with Oliver can continue reading her experiences on ruthhannahblog.wordpress.com.

 

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Read next: My Story: Working on My Mom Guilt

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