Friday, June 27, 2008

Zoey's Less Than Perfect Heart (warning: it's a marathon post!)

*Zoey, being a little leery of this new high chair thing!

My pregnancy with Zoey began quite differently then my others. Ignoring the obvious, which was that in two short months I would be 43, ancient in some peoples books. A full ten years older then my very good friend who would deliver her daughter only a few weeks before Zoey came into this world. We knew what medical statistics stated but pushed that aside, digested the impending arrival of child number 6 and moved on. The beginning weeks were difficult. I was sick from the get go. Unusual for me, as that normally doesn't hit till slightly later. My HCG levels were through the roof but ultrasound didn't show a baby. Over a weeks worth of blood draws, numerous ultrasounds, ruling out an Ectopic pregnancy and several Dr.'s visits, the day came and there it was, that familiar flicker. A baby's heartbeat. Huge sigh of relief. For as much as I had to wrap my head around another child at my age, I really, really wanted this baby. So that little heart beat on the screen was all I needed to see to let me know all would be well. A few weeks later and we actually heard the heart beat and by then we were already in love and planing the arrival of our newest addition. After the worst morning sickness I had EVER experienced subsided, I was able to settle into life again. We opted out of AFP testing as well as an Amnio. We knew what the numbers meant at my age. A level 2 ultrasound was scheduled for me at 18 weeks with a Perientologist. A doctor who often sees women "of advanced maternal age", I love that term. The first time I saw it on my chart, my eyes popped clear out of their sockets. What the heck were they talking about? I was just 30 yesterday, how could I become know as "advanced maternal age" so quickly? Oh well. I have learned to embrace the term today. Proud actually. Mark and I went to the appointment. Chatty little technician. Pointed out all the important things. Informed us that baby number 6 was going to be a girl. Cool. Moving on. Dead silence. Chatty Cathy, not so chatty any more. Mumbling something about not being able to get a clear picture of her heart, baby moving too much, blah, blah, blah. That sinking feeling took over my being because I knew, in that very moment, that something was wrong with my baby's heart. Mark, the ever optimist, dismisses my worry and assures me I am reading WAY TOO MUCH into her changed demeanor. The Dr. pops in, fills us in on the findings, instructs us to come back next week when the pediatric cardiologist would be there and well, we all know the way it went from there. So much transpired over the next several months, too much too tell here. But it all revolved around my little Zoey's forming heart. Specialists galore, too many echo cardiograms to count and the planning. Planning for delivery, planning for surgery, just planning and waiting. Her defect was a significant one. The easiest way to explain Zoey's defect was that the wall that separates all the chambers and divides two valves, never formed properly. Blood just whooshed aimlessly around. We would find out close to her birth that she actually had a larger "hole" then most with her type of defect. Alarming but manageable. Because Zoey came into this world so sick, her manageable defect soon became much less manageable. She entered already in congestive heart failure and they had not prepared for her lungs to have been so "flooded" We walked the pulmonary hypertension/heart failure tight rope for months. Administering numerous and various amounts of medication around the clock. Watching her struggle to be g-tube fed 20 hours a day, at such a slow rate because her body could not even handle the stress of DIGESTING breast milk. Gagging, coughing, retching. She fought. She fought hard. Surgery came and her fix was perfect. With a defect her size they expected to see some leakage afterwards but there was none. Zoey got her first big break. A perfect heart. That 5 1/2 months to get her to surgery was beyond insane. Keeping her healthy. Ordering the same hand sanitizer that they used at the bedside in the NICU, by the case. We still have it on our counters and in our cars to this day. We are all full fledged germaphobics. So where am I going with this you ask? I have touched on it before but now it seems official. Well ,Wednesday Zoey had a cardiologist appointment to check on her heart due to the side effects of the ACTH and how it had an adverse effect on her perfect heart. She is now categorized as having Hypertrophic Cardiomyopathy. Thick heart in lay man's terms. It has not gone down one bit. They like to see it as a 5. Zoey measures at an 11. So the drug that put her body through so much over 7 weeks. The drug that had me administering two shots a day into my little angels thighs. The drug, that in the end, did not work. That drug, now has left her with a less then perfect heart. They would have liked to have seen some reduction by now. Something. We will recheck in a month. If no change by then then we are looking at having to put her on a beta blocker. Beta blockers are relatively harmless but the idea of having to give her yet another medication, harmless or not, bugs me to no end. So Zoey's new perfect heart back in August of last year, is less then perfect, for now. We pray next month that we will see it measuring even the slightest bit smaller and then we will know it is heading in the right direction. Discouraging, a little. Her heart was the one thing I felt I could truly check off the list and not have to revisit after the surgery. Unlike her blood disorder, that hangs over my head like one of those giant anvils in the Bugs Bunny /Road Runner Cartoons, remember those? But we have been discouraged far more over the last 15 months and have gotten past those moments. This is just a moment. We are so blessed to be seeing her progressing in other areas and over coming obstacle after obstacle. We thank God daily for bringing her this far. Our hearts are full of gratitude for where we are today. Where she is today. As I leave you today, I leave you with one small request. Nothing really to do with us. Rather some of the other little ones, some of Zoey's friends. Zoey's friends have become very dear to us. We have come to love them and their families in a strange cyber space kind of way. The beauty of the Internet has also allowed us the gift of some amazingly, beautiful children and the privileged of being part of their journey. We are all in various states of our journey's. The process is forever changing. Some good days. Some, not so good. These children are in a constant state of flux. Never knowing which way the tide will be turning. So if you too have found a little one or two, through Zoey's Blog, I ask you to not only peek in on their lives but to pray for them . All of them. They are all in need of prayers of one kind or another. Some have struggles that feel insurmountable to their parents, parents who just are in search of answers for the children they love more then any spoken words. Not many can understand the sheer state of helplessness you feel as a parent, when you just can't, no matter what you do, you just can't help your child. They all need your prayers. These precious little ones. Their amazing families are just trying to get through each day the best they can, when really they often would like to retreat to their beds, but can't. Why? Because of the courage and resiliency of their children who never give in or up. I know that I am forever changed because of these children and my hope is that, through the prayers of many, that their journey's may be made lighter because of the love of others, even complete strangers.
"In life we cannot do great things. We can only do small things with great love" Mother Teresa


Dawson said...

Isn't it amazing how other children and other families, with whom we have never met, become such a huge part of our daily lives. We have come to love zoey as well as the other kids we have met through this ordeal. As far as Zoey's heart goes... I think it's just like every obstacle that has been put before her so far.... Just one more thing she will jump over. Just one more way for her to amaze us..... Just one more way for her to show the world how strong she is. God bless you guys

Reagan Leigh said...

Thank you for that made me cry (although it doesn't take much these days). I pray that Zoey's heart will begin to show improvement soon. These poor babies get over one hurdle only to be bombarded by another! Hang in there and I'll try to do the same!
Tera said...

We love, love, love this girl.