03 3 / 2012

I didn’t want to post three separate small blogs, so ill post all three together.

Scared
The title pretty much sums up what this section is about. During the visit to Alder Hey we took a tour around the hospital everything was going great, until we went up to the ward where Isla will be. It wasn’t so much the ward that scared me some of the kids were happy, smiling and just being children, and most of the babies seemed comfortable.

But there was this one baby that must of been about 2/3 months old, he looked like he was in dire agony, his parents trying their hardest to make him better, the doctor brought another drip stand over to try and relieve the poor child of the pain. And I think it really hit home that Isla could be in that way, and it could be me standing there, useless. Not able to take it away from her, and as a parent that is one of my greatest fears, that my children will suffer.

I know she will be under the very best care at Alder Hey, the hospital is run fantastically. But that doesn’t stop them moments where your feeling in complete darkness.

Ellie-Mai
Well my oldest daughter has her own spot on here, because although she is only 3, she understands that Isla isn’t very well and may be in hospital for a while. But the reason I writing about her is not because she understands, but she has said some of the cutest things I have ever heard this past week that have really cheered me up. The other day we brought Isla a teddy, and her exact words were “That teddy is going to make Isla better mommy”, we were also listening in on the Doppler, and because she could hear Isla, she decided to have a conversation with her, I cannot remember what she said exactly but its them naive moments that really brighten up them dark moments in your day.

Thank You
I just want to end this blog post by thanking a few people that have been tremendously supportive towards us. All our friends and family that have done what they can to help, and also to anybody that takes time out their day to view this blog.

29 2 / 2012

Today we had an appointment at Alder Hey Hospital, to talk to a Cardiac Liaison Sister and find out more information about how Isla’s condition is going to pan out. This appointment has really left us alot more optimistic but confused at the same time. 

Some of our questions were:
What happens until birth? - The Liaison Sister assured us that all we do is carry on as normal, nothing special can be done to aid Isla’s development, and the usual warnings and risks in pregnancy still stand.

What will happen to Isla from the moment of birth? - We will get to spend a few moments with her and take the normal photos, and welcome her to the world. But soon after this Isla will be taken to special care, where she is checked over and assessed to find out the severity of her condition. Then if she is not in a critical way she will be transferred to Alder Hey within 12-18 hours after she is born depending on what results the assessments bring. 

How long after Isla is born will the first operation be? And what operations will be done? - This was a question what the Liaison Sister found difficult to answer. She said that it depends which of Isla’s conditions are more pressing, amongst other factors. And will become clearer after birth.

In what way will the operations effect Isla? - When the operations are carried out, Isla will be in intensive care and how long she is there depends entirely on her stability. 

There were a lot more questions than the above some of which’ll be covered in later posts. But with the attitude of the Cardiac Liaison Sister it totally threw us off being prepared. She was really positive, by assuring us that the mixture of the two conditions in some ways makes things easier, and in others can cause complications. Whereas the original diagnosis, was majority gloom and doom. All not so happy comments, and what they would “recommend”. Which is where the confusion comes from with all the different professional opinions. But despite the confusion it has made us extremely optimistic that Isla will be strong enough.

27 2 / 2012

Well I thought my first informative piece should be on the Fetal Echocardiography, and what it is.

Disclaimer: In no way should this page be a substitute for professional medical care or attention by a qualified practitioner, nor should it be inferred as such. ALWAYS check with your doctor if you have any questions or concerns about a condition. The information I provide is only based on my knowledge.

A Fetal Echocardiography is a procedure carried out while the baby is still in the womb, its similar to a regular pregnancy ultrasound. But will usually be carried out by a Consultant Paediatric Cardiologist.

The test can detect:

  1. Abnormalities where the heart chambers, valves or arteries are either formed or attached abnormally
  2. Large holes in the heart and most severe forms of blockages of the two main arteries (Blood vessels) arising from the heart
  3. Most, but not all, forms of major and severe heart abnormalities

(Above information taken from Liverpool Womens Hospital Fetal Echocardiography leaflet)

The test isn’t 100% guaranteed, as blockages to valves and arteries can develop throughout pregnancy, even if everything appears normal at the time your scanned.

There are certain things that are undetectable, which type of babies this will happen too, smaller holes / blockages, blockages / holes not present at the time of the scan, and heart muscle abnormalities.

At the end of the specialised scan, a regular sonographer will complete the usual growth scan scanning all other aspects to assure growth is normal.

From Personal Experience
This scan is far from your regular scan, it was generally silent throughout. With some advance observations being made, roughly 30-35 pictures are taken via ultrasound in order to diagnose any issue there may be. 

27 2 / 2012

This song has brought me great comfort. Although nothing bad has happened to Isla, the lyrics throughout are just amazing. Hopefully anyone who reads this blog with the same feelings right now finds comfort in this song. I didn’t intentionally go out my way to find it either, I was just listening to the album and actually listened to the words, and instantly fell in love.

The lyrics below:

[Verse 1:]
You’re just a small bump unborn, in four months you’re brought to life,
You might be left with my hair, but you’ll have your mother’s eyes,
I’ll hold your body in my hands, be as gentle as I can, but for now your scan of my unmade plans,
A small bump in four months, you’re brought to life
[another version:] A small bump in four months, you’ll open your eyes

[Bridge:]
I’ll whisper quietly, I’ll give you nothing but truth,
[another version:] I’ll hold you tightly, I’ll give you nothing but truth,
If you’re not inside me, I’ll put my future in you

[Chorus:]
You are my one and only.
You can wrap your fingers round my thumb and hold me tight.
Oh, you are my one and only.
You can wrap your fingers round my thumb and hold me tight.
And you’ll be alright.

[Verse 2:]
You’re just a small bump unknown, you’ll grow into your skin.
With a smile like hers and a dimple beneath your chin.
Finger nails the size of a half grain of rice,
And eyelids closed to be soon opened wide
A small bump, in four months you’ll open your eyes.

[Bridge:]
And I’ll hold you tightly, I’ll give you nothing but truth,
[another version:] And I’ll hold you tightly, I’ll tell you nothing but truth,
If you’re not inside me, I’ll put my future in you

[Chorus:]
You are my one and only.
You can wrap your fingers round my thumb and hold me tight.
Oh, you are my one and only.
You can wrap your fingers round my thumb and hold me tight.
And you’ll be alright.

[Verse 3:]
You can lie with me,
With your tiny feet
When you’re half asleep,
I’ll leave you be.
Right in front of me
For a couple weeks
So I can keep you safe.

[Chorus:]
'Cause you are my one and only.
You can wrap your fingers round my thumb and hold me tight.
You are my one and only.
You can wrap your fingers round my thumb and hold me tight.
And you’ll be alright.

[Verse 4:]
You were just a small bump unborn just four months then torn from life.
Maybe you were needed up there but we’re still unaware as why.

24 2 / 2012

Since finding out about all of this, one thing that has been hard for us to do is keep things "normal". Although nothing immediately changes, you tend to put yourself in a very bad place trying to cope. Balancing life is tricky once you find out about any condition with any baby, it makes you sensitive towards things that you would normally class as minor issues.

But 2 days ago we had a wonderful day, it cost us more than we could afford. But it allowed us to feel better about everything. It was exactly what we needed, and all we did essentially was concentrate on our current children for a whole day, doing things they would enjoy.

We went to a local soft play centre (Jellybeanz) and then for a meal at a very family friendly pub (Evenwood Farm), which has an amazing children’s play area catering for nearly ANY child. 

And because we had this good day we finally realised the most important thing, and that is that we don’t push these two out because of everything going on. Although things are going to change a lot when Isla is here, instead of trying to live our “normal” lifestyle, we need to learn to adapt our lifestyle to include that of our current children, and Isla. And without this learning curve, we would probably still be struggling to balance life.

21 2 / 2012

Well I suppose the main story starts at our scan at 22 weeks. Me and Jodie thought that we were only sent back to check some minor details of the growth as the 19 week scan we had didn’t have all of the information. When the sonographer got round to checking the heart on the 22 week scan, we could sense her panicking looking at the heart, she then informed us she couldn’t see the left side of the heart. And tried to reassure us that it can be common if the baby is laying in an odd position, but then went on to say she needed to refer us to Liverpool Women’s Hospital. These words instantly strike panic into you, but over the next few days we calmed ourselves down and believed that it was just Isla laying in an odd position.

When we got to our more detailed scan (Fetal Echocardioraphy) at 23weeks, the wait to go in was excruciating. Being both nervous about what could be found and excited to see Isla again. During the scan there was complete silence, not like your normal scan where you have all the happiness and conversation involved. The Consultant took roughly 30-35 pictures all based around the heart then said she was sending in a regular sonographer in to complete a growth scan and we’ll discuss the results at the end. When the sonographer came she gave us the scan picture below then took us into a side room to discuss the results.

When we were in the side room waiting for the consultant to return and explain the results, you get that feeling in the pit of your stomach where you know something is terribly wrong, else they would have just told you there and then. 

When she returned she gave us the news that Isla had Hypoplastic Left Heart Syndrome & Transposed Great Arteries, and that the chances of survival were next to none, and gave us 3 options: Terminate, Compassionate Care, or to Operate if she survives until birth. Over the coming days / weeks / months ill be posting all the information about the above conditions and options that we find out, and we’ll also share our personal journey throughout all of this. 

So many people told us what they "would" do, but when faced with all the information given to yourself you can’t help but doubt, and feel that termination would be for the best. After weighing up all of the facts, the effect on our current two children, and how conditions like Isla’s can effect our whole lives, we decided to fight and that we would be happier knowing we tried, and never gave up if something was to happen. 

Thank you for reading.