Going back in Time: Glenn Recovery

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!

February 2009
Wow! I can't believe that it has been 2 months since we came home from the Glenn already. Kieran is almost 6 months old!! And we have been experiencing something I wasn't sure we would ever have: enjoying being at home with our baby with some semblance of normalcy, with a sense of routine and even a bit of predictablitiy to our days!!!! We seem to have entered that HLHS "honeymoon period" parents told me about...far enough out from the Glenn to be mostly recovered, before we have to worry about the Fontan.

Now that 2 months have passed, I feel like I can finally be a bit more open about what was going on around that time. Kieran's 1st surgery went amazingly well. Several of the cardiologists said that in all their years, they had never seen a baby with HLHS do as well and look as good as Kieran. The Glenn went fairly typically, but I wasn't prepared for it like I should've been after how relatively (and that is a huge "relatively") well the Norwood went.

I don't think Kieran was prepared for it either, and when we came home, 2 nightmarish weeks were spent with him mostly miserable, screaming and wincing every time someone touched him, crying constantly due to pain and headaches and probably general disorientation. Luckily, his OT had some wonderful techniques for getting him to calm down, but for weeks I was wondering if he had changed forever. He's much more relaxed and happy now, but I still feel like the surgery altered his personality...he seems so much more tentative now, and wary of people and new things. I read this book called My Heart Vs the Real World recently, and it's written by a guy who was born with CHD (congenital heart disease), who interviews children with various CHDs...it's all about how they grew up seeing the world differently, and I have to get used to the idea that there is no way these experiences are NOT going to shape who Kieran is and becomes as a person.

I was pretty much a wreck right after the Glenn, having held up well until that point, but overcome by sheer stress and exhaustion immediately after, and was very ill for a good 6 weeks. I wasn't really open about that, though I hinted at strep, sinus infections, and ear infections I got. Anyone who has lived through the interstage period knows the sheer stamina involved in simply keeping your baby alive...a day to day thing where towards the Glenn, your baby might barely have enough energy to eat.

Now, I feel better and finally able to talk about some of this stuff, but life was so unpredictable for the 1st several months, that even now, I wonder if I can make plans for tomorrow, a month from now...after having to cancel anything and everything on a dime, to rush to the hospital or stay home because Kieran was having a "bad day," or stay in because I might be coming down with a cold that could've wound him up in the hospital or worse, not even bothering to commit to even the simplest gathering...even now, it's so hard to believe things might be ok for awhile. I want to meet up with my best friend in DC in the next couple months, but I keep thinking, "will I have to cancel it? will I buy a ticket only to end up staying home?"

Other things...HLHS kids are something of a medical curiousity, and Children's Hospital here in WI does a TON of research on HLHS. It makes them very eager to approach us for countless research studies. They want our DNA--blood and saliva--they want huge 30-pg questionnaires filled out, they want to do developmental assessments on Kieran...I mean, there are just a ton of people in the medical field who approach us. I'm very torn on this, esp given what happened during the last hospital stay. We had been saying yes to about 50% of the research studies, many of which involved taking some of Kieran's blood during routine blood draws.

Results from one of these blood draws the day before the Glenn showed that Kieran tested postive for another horrendous disease, which I won't mention here (think incurable, bodily fluid-borne disease)--which luckily turned out to be a FALSE POSITIVE, but it required us to get him many extra tests, submit to a painful exam, caused strife in my and shawn's relationship, even made me question my faith in God. It was the most horrible time in my life, ever. I found out that he wasn't even supposed to have been tested for all these extra conditions to begin with, and it had caused all this unnecessary heartache...I can't pinpoint to any of the research studies, but I wonder...and it just makes me loathe to consent to ANY more bloodwork beyond what is ABSOLUTELY NECESSARY.

Then, there is the whole notion of not wanting Kieran to grow up feeling like a medical circus sideshow...but then again, I don't yet know how much he'll want HLHS to make up his identity. He might really want to be involved, and contribute to research. He might not. I'm feeling my way through this too, as an "HLHS parent." Some parents are super involved, and have made advocacy, education, nursing, support, whatever, their lives. Some parents don't want to have anything to do with any of that, and want to live their lives as "normally" as possible, and so far I'm kind of in the middle of that spectrum, unsure of where it's going in my own life.

The last thing I can start talking about is some form of survivor's guilt...but it's not guilt, it's more a sense of injustice. Survivor's injustice...1 of my american friends still in mongolia asked me how we can afford all this treatment for Kieran. I don't regret it, I don't feel guilty or that he shouldn't be alive because of his condition. I mean, we had the chance to say no, both during the pregnancy and after he was born. But we were certain we wanted to give him his chances at life. But I do sometimes think about all the resources that have gone and are going into his survival. I think about all the people around the world who are dying of much less serious conditions. And I also think about the very few countries where a baby with HLHS can be treated...USA, Canada, UK, Australia, New Zealand...not so in other places. HLHS is 100% fatal within a few days of life without a heart transplant or the Norwood surgery. One woman who emigrated to the US with her husband so their baby could have the Norwood after birth told us that in Russia, if HLHS is detected on an ultrasound, parents are told to seek an abortion because there is no treatment available in the country. I feel very grateful. But I also wonder why we should be so lucky to live in the US...not only in the US but next to 1 of the best hospitals in the world for HLHS...and about all the others who could be saved but aren't...so what to do with this sense of injustice? I'm still working on that one.

As for Kieran himself, he's doing great. He is happy, he is thus far doing so well. His primary occupations have gone from barely having enough energy to eat and get enough oxygen to yelling at his toys and being obsessed with chewing his hands...but as always, he works 100% of the time on being cute and lovable.....