Photographs by Laurie @ Horizons Photography

February 13, 2012

Happy Heart Day

Joshua - 19 weeks


Once upon a time, in a world not so far away. Valentines day meant chocolates and flowers, romantic dinners and beautiful words written in a Hallmark card. It was nice, I think on it fondly and we still celebrate in this house, with cards and small gifts that show that we love the family we are a part of. You see, my heart is so full of love that one day a year can't possibly be enough to tell these three men how incredible I think they are, nor how blessed I believe I am.

However, Valentines day is also a day for us to do our best to tell you about CHD, as you all know by now. Heart day as it's come to be called in the world of Heart Moms is day to tell your friends, your co-workers and anyone else who will listen about our little warriors, the battles they face, and how we hope to one day win the war.


Have I ever told you how they detected Joshua's heart defect? I went to the regularly scheduled 19 week ultrasound to discover if this little person growing inside me was a boy or a girl. We were so nervous that day because secretly we both felt like it was a boy, so were prepared for that, but we were terrified that if it was a girl we would feel disappointment. We had names picked out for both sexes of course, Joshua and Kiera. As I Lay on the table being prodded right in the blatter I could have sworn she said 'she' when talking about the baby. I closed my eyes, trying hard to change the image in my mind of the little boy I thought I was carrying to the little Kiera I was carrying, I just couldn't picture it though. I had been so sure we would have a boy. Then the tech turned to Tim and said 'see this?' and Tim looked, he smiled and said 'is that a package?'... and the tech. laughed and said 'yes, that's his package' with a small smirk. Somehow I had heard wrong, Kiera faded into the mist and Joshua became rooted in my heart.

A few days later our midwife called, it seems that during that ultrasound they had found that the umbilical cord was a two vessel cord, rather than three (two input and one output). She said we would need a deeper 'stage 2' ultrasound at women's college. The two vessel cord is often a sign of either kidney problems or heart problems she had said, but it could also be absolutely nothing to worry about. I held onto that tidbit of information and other than making sure I was at that appointment I didn't think of it again.

The stage two ultrasound was pretty much like the first, we had it confirmed that Joshua was indeed a boy and Tim and I chatted about inconsequential things while the technical worked.

A few days later Tim called me at work, the midwife had called him he explained. They are seeing an enlarged (ballooned) right ventricle. A fetal ECHO would be needed to assess what we were dealing with. Again we were told that it could be nothing and though mildly concerned we again went about normally without stressing too much about it.

An excerpt from my journals at the time

'The morning of our fetal ECHO dawned and we went to the hospital feeling hopeful and light in spirit. This was going to be nothing! We chatted with each other through out the procedure and watched Joshua’s heart beating with rapt attention. I am not a doctor, nor am I an x-ray technician but his heart was beating, that was good right?! After an hour of pushing and prodding at my tummy the technician stood up and said that he would show the pictures to the doctor and then we would be finished unless they need more pictures.  Tim and I sat in the room, Tim spinning around on the technician’s swivel chair in boredom and me quietly feeling the bumps, kicks and hiccups of my son. Tim wandered around the area, and came back after a few moments to tell me about a small room across the hall ‘ it’s so sad’ he said ‘there is a table, a couple of chairs, a model heart and a box of tissues’. The doctor and technician came back, they would need more pictures so I assumed the position and they squirted cold jelly onto my belly once more. Tim took up his spot at the foot of the bed and we shared a look of trepidation. They finished the last few pictures and told me I could get dressed, then they asked us to wait in the waiting room, or at least that is what I heard. We went to the waiting room and the Doctor said ‘no, in here please’ and he directed us to the very same room that Tim had seen in his earlier perusal of the area. We were now the people sitting in this ‘counseling room’. The model heart was the most prominent feature of this room, that and the box of tissues are all that I really remember. Although, thinking back on it, I remember that that room was one of the smallest rooms I have ever been in, the walls were so close, and the air seemed so thin.
The Doctor came back in; he smiled and introduced himself, shaking our hands. He must see that my hands are shaking, that my skin has become clammy. I find myself feeling slightly embarrassed about it. Tim made a joke, something about the room but the doctor doesn’t smile and it makes the knot in my stomach grow tighter. Then he starts to talk and I am lost in the scientific words that make up the heart of my first born. Something about valves, large muscle mass, possible death, very serious, high risk pregnancy.
What was actually said was something like this: Pulmonary atresia with intact ventricular septum (PAIVS) is a rare congenital cardiac lesion characterized by heterogeneous right ventricular development, an imperforate pulmonary valve, and possible extensive ventriculocoronary connections. Prognosis and management depend on the degree of right ventricular hyperplasia (including tricuspid valve hyperplasia) and the dependency of the myocardial blood supply on abnormal communications between the right ventricle and coronary arteries.
I am lost in a sea of practical matters that don’t matter at all. ‘Will I be able to keep my midwife?’ No, I am being reassigned to the special pregnancy unit at Mt. Sinai Hospital. ‘Will I be able to take him home right away?” Not likely, he will need to be transferred to Sick Kids Hospital following his birth’. “Will I be able to breast feed right away?’ Possibly, they will let you if they can.” What I really wanted to know but was too afraid to ask was “Will my life ever be the same after this conversation?’  Tim asked all the right questions, the ones that really matter, he seemed to understand what was happening, and he seemed to be calm in this raging wind that kept knocking me off balance. 
Looking back on this period in our life, at that day in particular and it's all foggy to me, the memories so distant and misty. It stole the excitement from our first pregnancy and turned it into a question mark, filled with fear and worry. However, it allowed us the opportunity to know Joshua, to watch him grow. '

You see, there were other complications with Joshua's health, and with the pregnancy, things I won't get into here for fear of seeing this post turn into a HUGE post. However, it meant that we had a number of scares along the way that Josh would arrive too early. On January 1st 2008 I was taken to the hospital and told we would be having the baby that night, until the pediatrician explained that there was no way a baby with his heart defect would ever live that young outside the womb. They injected me with steroids to help his lungs and though we had a scary week of 'we have to take him now's'... he didn't come. Instead he came three weeks later via an emergency C-section. Those three weeks bought him time, they allowed his lungs to develop just that little bit more, they allowed him to gain just that much more weight. I have shared his birth story before so I won't do so again, but I will tell you this. Early detection saved the life of my son. That is fact, that's just one more important thing you need to know about CHD. The earlier the defect is detected the better the chances that child has of living to see his first, fourth, 20th birthday. 

Happy Heart Day!