Sunday, 15 September 2013
I came to realise that by not sharing, it was possible that I was not dealing with it fully. Even having been in a near constant state of hopefulness and optimism (regardless of the tears), it doesn't have to be quite as 'real' if most people don't know.
I also didn't want anything negative to define our littlest boy, but I realise that sharing what we have/are/and will being going through will not only show how much of a fighter he is, but it could possibly help others in the same situations. To hear a personal story is something I have found priceless in preparing for my little boy and the road we will endure in the next few months.
Our little heart warrior.
This all started when we sat, making jokes, killing time, awaiting the ultrasound technician to let us know all was good and we could go home. We were at my 20 week anatomy ultrasound, and with my previous experiences they were a pretty quick thing. After waiting for what seemed like hours I started to feel a little uneasy. When the Doctor came in with the tech, I knew there was something up.
The doctor was spouting off big words and might as well have been the teacher from Charlie Brown. All I heard was 'Variation in major vessels of the heart', 'will need to see you right away for fetal echo'. I know I had the deer in the headlights look as I opened my eyes as big as they could go in order to not cry. I felt so silly having been so preoccupied with looking for the baby's gender when being faced with something so serious.
Of course 'see you right away' was a week away. It was a really long week of unknowns, I felt sick to my stomach all the time, and I found myself staring into nothing a lot, just waiting for the next ultrasound.
The next week, during the fetal echo (which is a focused ultrasound with fancier cameras) Dave and I held hands, staring at the screen, watching our little baby's heart beating well. It had four chambers, no holes, and the blood was mixing as it should. The doctor came with the technologist again, and sat us down to explain what they had found, and the basic anatomy of it. Then they sent us off for lunch to return to fetal assessment for a follow up ultrasound to confirm what they had found.
The high risk Obstetrician explained to us, while confirming through the scan, that our little baby had a congenital heart defect. Transposition of the Great Vessels, also known as Transposition of the Great Arteries (TGV or TGA). It is literally what it sounds like, the position of the great arteries (Pulmonary and Aortic) are switched where they enter the heart. This makes the blood circulate through the lungs, come back to the heart, and then re-circulate through the lungs. Leaving the body with blood that has no oxygen. While in utero, the baby has a valve that remains open and mixes the blood well regardless of the heart defect. Once born this valve closes, and the defect is fatal unless treated fairly quickly.
The OB was very understanding, very good at explaining, and very good at answering all of our questions and fears.
We found out then that this meant our baby would need a echo cardiogram, a cardiac catheter procedure and medication right after birth, followed by open heart surgery to fix the defect, within the first week of life. While taking in all this information, when the OB asked if we wanted to know what we were having, we both knew that having a little something to take our minds off the news we had just received was a good idea. We were having another boy.
At first, after learning all of this, everything seemed surreal. I floated around in a fog, trying to wrap my head around what all of this meant. After many more ultrasounds, cardiologist appointments, neonatologist appointments, as well as my regular appointments with my midwives, we found there is a very straightforward plan. We are in wonderful hands and I couldn't be more thankful for everyone who has been a place of constant support through this endeavor. I was also extremely happy to learn that because our little boy is fine while incubating, I have been able to keep with my midwives and not been shuffled off to a high risk obstetrician. This has been a great source of strength for me, as they are very much on the same page as I am. They are my advocates when I can not be, and have been able to share very positive experiences with me about similar cases.
We have also been very fortunate to have a huge, amazing support system. Without all the people that have been our rock, I am not sure what we would do.You all know who you are, we love you and want to extend an impossible thank you. To infinity.
I am hoping that with this post we can keep family and friends updated, I do plan on updating as things happen. I am not sure how often this will be, but it is with my best intentions.
We also hope not to offend anyone, but we would really appreciate our continued privacy during this time. Thank you for taking the time to read this post, and thank you everyone for your continued support, it really does make a difference no matter the extent. Thank you.