Mom hijacks Avery's blog

Some things are hard to write from the voice of a four year old... that's right, today is Avery's fourth birthday! It broke my heart that when she woke up on her birthday her Mom and brother weren't there to greet her, make her the requested chocolate chip pancakes, or give her presents. Instead, Mom and Keane were in the hospital, both curled up in a Pediatric sized bed, bars up on the side, waiting to better understand   "what now?"

On Thursday, I brought Keane in for his four month "well" child check up. I had a few concerns, of course, what Mom doesn't? However, to be honest, I am still in shock and have not processed the information I am going to share with you...

Keane has an AV canal defect in his heart. Basically, it's a hole where there should be no hole. The hole discovered after a murmur was detected on his physical exam. Then the words that leave you unable to speak, "have you ever had concerns about the development of your baby?" Yes, I noticed he was still quite small, didn't have the physical capabilities that Avery did at the same age. I guess I thought he was a boy who liked to eat and lay around on the couch. It sounds so ignorant now. Did I know that the hole in the heart was most commonly associated with Down Syndrome? Actually, intellectually I did. I took quite a bit of genetics, pathophysiology, etc. in college. Did I think my son had Down Syndrome? Well, I never really thought about it. After all, I had the perinatal tests and his anatomy had been reviewed on ultra sound. I thought of all the things that could happen to your child, surely you crossed off heart anatomy and were sufficiently reassured about the risk for Down Syndrome in utero.

Our pediatrician consulted with the pediatricians at the Children's Hospital in Portland and we have a pre-operative consult on Tuesday, June 19th. My sweet, lovely and perfect little boy has a hole in his heart and needs open heart surgery to repair it. You know, when I was in college, I worked in pediatric open heart cases, as a tech and OR assistant. For all that I understand about the surgical process, my job ended in the OR. I really have very little understanding about the road ahead. I am suffocating under my lack of information and knowledge, secondary to my own broken heart. There are not enough Google hours in the day to feel fully prepared, by this week, for the road ahead.

So... that was Thursday, the visit; Friday the cardiac echo; Saturday Avery's birthday party; Sunday night, my suspicion that something was wrong...or worse...or not right. I called the pediatrician. We met at the ER. Blah, blah, blah, blah, "congestive heart failure," blah, blah, blah, "supplemental oxygen needed" blah, blah, blah, "admit you tonight" blah, blah, blah. What did we miss? How could we be so attentive to his every need and not know he was sick? He had been on his growth curve at every prior visit... then at four months he finally fell off the curve. All of his energy has been going to his heart.

Now we are in Portland, at my parent's house, with our supplemental oxygen and our now medically frail child that was all to healthy to us only five days ago, preparing to eat birthday cake with Avery. Is this real?

We have been blessed and embraced by an amazing network of family and friends. Many thanks to all who helped pull off an amazing birthday party for Avery on Saturday. We will forever be grateful. We technically do not have formal confirmation of Keane's kerotype test - whether or not he has Down Syndrome. Who cares, really? He has a hole in his heart and he is rapidly deteriorating. Step 1 - fix heart. Step 2 - love, love, love for what ever steps come next.

We will be posting updates and sharing pertinent results and next steps when we know them through the blog. We love you all very much.

With hope and love....