Tuesday, January 31, 2012

I Feel Lucky

I'm feeling lucky.
I have spent countless hours frightening myself and reassuring myself and confusing myself by reading through posts on the Intermountain Healing Hearts (IHH) forum I joined for heart parents. And today I find myself feeling so grateful for the knowledge we have about what is going on with Clara. So many of these sweet moms had to find out, within a day or two of their baby being born, that they weren't heart healthy. Then the babies were life flighted to PCMC and their heart journey began with a separation.
Today I'm bragging because we have time to prepare emotionally and mentally for this. We can do all our googling now, we can research and ask questions and buy side-snap onesies beforehand.
And though I'm tired and not sleeping well quite yet, I am thankful for the time to rest up and prepare to greet our baby girl, ready to help her with whatever our next steps are.

Sunday, January 29, 2012

Meeting More Doctors

The first few weeks after your life path shifts are busy days! We spent time with family and friends, and kept busy with work. There were up days and down days and a flurry of nursery decorating. Our OB coordinated an appointment for us with a perinatologist and genetic specialist.
On the morning of the appointment, I again woke up too early and then dragged my feet getting ready. I didn't think there was really any reason to be worried, but I also felt some trauma around the idea of more doctors, more tests, more to think about.
The team at IMC was so great. We spent about 30 minutes with a tech doing another ultrasound, and we got to see the pictures on a big TV while she worked away. She measured EVERYTHING she could, and took a grundle of pictures for us to take with us. She and the doctor both said they didn't see anything to concern them. We had also had visits with the doctor and a resident and two genetic specialists-the exam room was hopping. They took our medical and family history and then we talked about the amnio. As we talked through the options and what information we would get from the test, I knew I had to do it. I knew it was risky and had heard it hurt a lot, but I knew I would not sleep without knowing one way or the other on the DiGeorge.
For the record, the amniocentesis was way less painful than they tell you. It pinched and felt weird, but was not terrible and was almost as fast as you want it to be. Todd watched the needle on the ultrasound, though I could not. I normally would not be able to look away from a medical procedure AND a picture of our baby girl, but this time was not able to look. But then it was over, and we discussed next steps, were told the results would take 2-3 weeks, and were sent on our way.
And the anxiety set in once more.
Every pain or twinge in my belly meant, in my mind, things were going wrong, the worse possible outcome of an amnio was about to become real-1 in 300 results in a miscarriage. And I was sure that the results would show she tested positive for DiGeorge and the stress of waiting would put me over the edge and I just had to do SOMETHING....
So, we crafted! Todd and I painted a little dresser for our baby girl, and we named her (CLARA!) and we kept busy with decorating the nursery. We're shopping for a new car and my sister in law CC helped me finally finish my baby registries and I had brunch with an old friend, Gabby. It's only been a few days, and this wait may just put me over the edge, but my mind is full of Clara and hope.

Saturday, January 28, 2012

Friday the 13th

I was almost 28 weeks pregnant, and our OB had referred us to PCMC for an echo cardiogram. I was diagnosed with Type II diabetes many years back, and though my BG levels had been relatively well controlled during the pregnancy, it is standard to check for heart defects in all diabetic moms. We had been up a few weeks before for the procedure, and they called us for a follow up.
We left early to head to the hospital, after not getting much sleep the night before, but we were optimistic. Todd was so reassuring and kept hold of my hand, every minute that he could.  Before I was quite ready, they called us in and the tech began to check our baby's heart. She was quiet, though she had warned us she would be. We watched the morning news program on CBS, and I remember really liking the dress that Oprah's Gayle is wearing, but not catching much else.
The tech had the cardiologist join us, and I remember willing myself to believe that all of this was still normal, they were just being thorough. When they finished and asked us to meet in the office to review the results, I knew in my heart that this wasn't a good sign. We had had such a charmed pregnancy up to this point-depsite all the obstacles, we got pregnant fairly quick, I had had almost no sickness or other issues, and we couldn't believe we were getting so close to welcoming our little girl. I couldn't imagine that our good luck wouldn't continue, and yet somehow knew it was ending...
The cardiologist and nurse coordinator explained that they had found a defect in her heart. I have to rely on Todd's memory of this discussion, because I stopped processing everything for a bit. We learned that she had a defect called Truncus Arteriosus that meant that a single blood vessel comes out of the left and right ventricles instead of the normal two. The prognosis, while scary, was relatively positive. Truncus Arteriosus, when treated shortly after birth through open heart surgery, usually has good results. Breathe in and out, Jess. We can do this.
And then they started talking about DiGeorge Syndrome. This heart defect is often (25-40% of the time) associated with a chromosome abnormality where a chromosome does not develop properly. The result varies from 'just' a CHD (congenital heart defect) to severe developmental, psychological and physical concerns.
All things I was most afraid of, the things I never thought I would find the strength to handle, were suddenly presented to me as real possibilities. How would I find the courage to help her live a strong and happy life, where would we find the resources and the money to give her all the opportunities she deserved, how would we manage? It's hard to talk about the darkest places in our minds where we are scared and unworthy, but impossible to ignore them when presented with a challenge to the picture of what we thought our life would be. I felt guilty for every fear, and responsible for making a choice to have a baby after so many years, and believing for a minute that it was proof that I made a bad decision, once again.
We were told the baby would be tested for DiGeorge when she was born, or we could decide to do an amniocentesis before to find out. We would hear from a perinatologist and geneticist in the next few days to determine next steps.
After talking to the doctor and nurse for quite some time, we headed home and spent the day together. We talked and researched and cried and just held hands. We talked to family, and received a priesthood blessing from my dad and two of my brothers in law. We were referred to a Facebook forum of people involved in the world of CHDs-parents, children, nurses, etc. I took a few days off work to process the news and spend time with my sweet, optimistic husband. I'll never forget how he let me cry and cry and he never gave in to anger or despair, he always reminded me of how happy we were and how blessed to have this little one coming. Thus began our journey...

CHD Awareness Week