Surprises

Some of you may know this and some of you may not but we have a very special little girl. We haven't met her yet, haven't even gotten a hold but we know that she is special.
We got our first glimpse of her when she was only eight weeks old, at that time she looked more like a blob. Not human-like at all. But we knew she was was going to grow into someone beautiful.
Our next glimpse was at twelve weeks then twenty week mark, we were looking forward to this scan because we had always planned to find out what gender our baby was. We didn't like (or more like probably I didn't like) having to wait and see, at least we could start preparing.
What we were not prepared for was that the sonographer struggled to get a good look at the heart; she got Jess to take a walk, move all around, come back a few times until she got a very good look and I am thankful that she did.
She let us know that she had concerns about what she was seeing and decided to let another sonographer who was more experienced than her come and have a look. They both let us know that something was wrong with the babies heart, they just couldn't confirm what.
So what does a person do in this day and age when they hear a condition they have no idea about? Google.
We spent the next couple of days googling and trying to find out everything we could about it. I don't know if it really helped but it made us feel like we were at least doing something about it. The words Hyperplastic Left Heart Syndrome (HLHS) kept occurring in every search we did. These were words I had never heard before and had no comprehension of whether it was good or bad.
We got an appointment with a doctor who let us know that he agreed with the diagnosis of HLHS but that it still wasn't definitive yet. We would need to fly out to Townsville to meet with a Paedatric Fetal Specialist who could do a more detailed scan and hopefully let us know more.
We were devastated but persevered. We let our family know, our church, our friends. They kept saying things like "If there is anything you need just let us know" but the funny thing was at this moment there wasn't a whole lot they could do. But the moment they said "We're praying for you"; honestly it made us smile. Something as simple as knowing people are praying for your situation is a great comfort even though to them it may seem like they could be doing more, but it was all we needed.
We met with Dr Watson in Townsville and had our next scan. I was believing that our daughter would be totally healed and was praying under my breath during the whole entire appointment but I knew something was still wrong when the lady doing the scanning asked us questions about our medical history upon looking at the heart.
Dr Watson then pulled us into his office and let us know that instead of our baby having a left side and a right side of the heart, there was only one side. This wasn't something that could be cured, in fact in order for her to survive its likely she would need open heart surgery within a few days of being born followed by possibly further surgeries throughout her early life. He let us know that there could be chromosomal difficulties such as downs syndrome or defects which could prevent any life saving surgery from taking place. Plus our baby since she has such a special heart may go into heart failure before she is even born because it may not be able to sustain all the hard work it is doing. Her birth will not be able to take place in Mount Isa, but we would have to relocate ourselves to Brisbane for months or possibly even Sydney if they discover things are worse than they appear.
He gave us a call a few days later to let us know that her condition they believe as of right now is called DOUBLE INLET LEFT VENTRICLE and that she also has TGA which is TRANSPOSITION OF THE GREAT ARTERIES (which means that the arteries are reversed from where they should be).
It's been quite the journey and we are only a couple of weeks into it. We have an appointment in Brisbane hopefully next week to see a Paediatric Cardiologist where we will get more answers and information on what our next step is.
But our daughter is going to be a fighter, she is strong, she is a kicker (she kept Jess up last night with the amount of kicks she was giving her) and that God is in control.
We have decided to name her Riley Eve Casey. Riley means Courageous and Eve means To Live/To Breathe.
This blog was created so we could share the journey with you and that as new information arises you could keep us in your prayers. We are believing for a great result and we hope you will stand with us.