Going back in Time: A Norwood rough patch

I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!

September 5, 2008
So, remember way back when I compared our journey with Kieran's HLHS to travel? I did it because I know travel, I love travel, and travel implies uncharted territory and adventure. Originally I said something to the effect of, "imagine you've always wanted to go to Paris. You get your passport and buy your ticket, and suddenly life denies you a French visa. It suddenly seems like everyone has been to, or is going to go, Paris but you. The plane filled with happy Parisian-goers takes off without you. But suddenly the airline compensates you by giving you free airline miles instead, and you decide to use them towards a new adventure. You embark on a journey to much less-traveled places. You decide you'll see a lot of the world you didn't plan on seeing."

Well today I feel like the train has stopped in the Namibian desert, and on top of that, the train might be here for awhile because it needs some repairs. Nothing personal, Namibia. I'm sure yours is a beautiful country well worth visiting. It's just that I saw a National Geographic documentary on a particularly nasty Namibian drought at an impressionable age.
So I've reached this sort of "Namibian drought of the mind thing."

Let me just say here that things are by no means going "badly." It's just that Kieran was supposed to come home today per everyone all week, and I let myself get all excited, and we were told late yesterday that he is not coming home today, and most likely not this weekend, and maybe early next week.

To make a very long story short, when a Norwood procedure has to be done, a shunt has to constructed in the patient to connect the pulmonary artery to the heart. There are 2 types of shunts, the BT and the Sano. The BT is a little more narrow, which allows less overflow blood to the lungs, but can also result in disastrous blood clots if the baby become dehydrated (say, from an illness) between the Norwood and the Glenn procedure (which is done at 3-6 months of age). The Sano is a little wider, which results in more blood going to the lungs initially, but a lower risk of blood clots, and a potentially longer shunt life.

Kieran got the Sano, and since his surgery he has been having issues with too much blood going to the lungs. Now, this is in no way reflective of a bad choice on the part of the surgeon, and Kieran is doing great. His echo shows that things are working wonderfully so far with his heart. It means that once he grows into his Sano, he shouldn't need the Glenn until he's at least 4 months old.

The bad news is, because so much blood is going to his lungs, he is burning more calories because he breathes so quickly. This means that even though it looks like he might be taking in enough food for a "heart baby," he might not be getting enough vis-a-vis his respiratory rate.
So the long and short of it is, they want to keep him at the hospital longer to try to either bring down his breathing rate, or hope that he grows into his shunt a bit more and his rate comes down on its own. Either that, he'll have to eat still more, which is a challenge for HLHS babies. It all sounds good, right? Well, from a medical standpoint I suppose it does, but from a maternal standpoint, I'm sort of at the end of my rope with the hospital environment--it's been 30 days since I've been at that hospital and I can't help but feel paranoid about what feels like a super-long hospital stay (though in the HLHS world, it's not) and its effect on all of us.

The longer he stays there, the more he's exposed to everything--procedures, radiation, continuous medical equipment/monitoring, germs from the billion people that come in every day (and our room is shared with another baby and couple, who bring in friends and family). The longer he stays there, the more he's missing out on the "normal kid stuff," like going in a stroller, car, bouncy seat, sunlight, just plain change of scenery. The more he stays there, the more blood work and x-rays and routine stuff they do everyday he has to go through.

And I think me and Shawn are starting to crack a little. I think we're a little frustrated with this cycle of "adjust drugs, test for how he's reacting, the tests upset him and tire him out, then he's too tired to eat as much, so let's adjust his meds again and see if that helps..." etc.

I think there's a point where a lengthy hospital stay has the potential to become detrimental to overall family health and wellbeing and I think we're kind of reaching that point. I honestly don't see what they expect to accomplish in the hospital that we couldn't do at home. We've done all our home monitoring training. We have all the equipment. We live within driving distance of the hospital and will be going there every 2 weeks for follow up appointments.

But no.

I advocated, but in the end, my maternal concerns don't trump the medical team's, obviously, and so we are still one home sans baby.

So yeah, here I am being very glad and very grateful Kieran is doing as well as he is, and trying to be glad and grateful for the care he's receiving and the caution of the medical team(s), but I am fighting maternal instincts that're screaming, "he should come home now!!!!!!!"

On top of that I'm stressed and feeling totally out of control and unsure of how much more bonding I can possibly do with Kieran with respect to the CONSTANT interruptions and lack of privacy and traumatic events (like I how I'd just sat down to pump yesterday when some lab tech came into the room, whipped the curtain to our side of the room open, and announced it was time for his blood draw...which resulted in him having screaming fits, heart rate going up, breathing went nuts, and here I was in the corner unable to go console him because my uncoverred boobs are attached to some $)*@ machine and spurting milk everywhere, which all resulted in everyone and their mother pouring into the room to see what was wrong. This is my life right now.).

Alright, so here I am in the Namibian drought, trying to enjoy the scenery but knowing all this craziness is going on with the starving lions prowling around and the train broken down and no one listening to my views on how to fix it. Might as well have an espresso or something...oh wait, it's a drought. No water for the espresso machine. Duh.