Those who know me well (or who have read this blog for any length of time) know that I'm not entirely a "sunshine and roses" personality. I have bad days and I'm not exactly shy about sharing when I do. I know I'll have more. But while I wouldn't wish a congenital heart defect on any family, there are several things we can be thankful for in the midst of it. I'm hoping that when a bad day comes around again (and I KNOW it will ... oh, how I know that it will), that I can remember these things:
1. We are having a baby (all in utero pictures taken thus far pointing to a very, very CUTE one) and conception did not come with any real difficulty. I don't say this to brag because this is something I cannot take any credit for. If women have any control over their fertility, it is minimal. I just mean that despite having had some fairly significant health struggles in recent years (some of those significantly affecting my reproductive health), this is a gift that is not lost on me. I know that despite fighting for it, not everyone gets to experience this, even those that really would like to.
2. Ewan's condition was diagnosed early. We definitely had mixed feelings about this at first, largely from the way it was handled and how we were treated in the office where the initial diagnosis occurred. We were pretty angry for awhile. But given time, we realized this early diagnosis was a gift. Without it, we'd be dealing with Ewan's heart condition in a highly reactive crisis mode instead of being prepared (and we've met more than a few families where this has been the case -- given the choice, I'd take knowing ahead of time). It is certainly to the advantage of everyone involved -- us, Ewan, our entire care team -- that we know this ahead of time.
3. We've got an awesome support team -- an all-star line up -- for the birth. Having had the experiences I've had with doctors, it was no surprise to many that when we found out we were pregnant, I sought the care of midwives, wanting a more personalized and less medical approach for our child's birth. I was concerned when we found out about Ewan's heart condition and realized that we would need to transfer care more than halfway through the prengancy to an OB and have a hospital birth -- not at all what we wanted. And now I have an OB who is someone we not only like (we actually LIKE her, and if you knew my history with doctors, this is really saying something), but who also embraces and welcomes many of the philosphies of midwifery that drew me to it in the first place.
Additionally, the cardiac team at Seattle Children's Hospital is awesome. They are compassionate, wonderful, and incredibly likeable people who are also highly skilled repairing baby's hearts. Some of the procedures that they use to fix these tiny hearts were pioneered by people on their medical team.
And let's not forget Annie, the super-wonderful doula we hired. I don't even know how to tell you how amazing she's been and how much her support has meant to us. She feels like family, and I would recommend her to anyone in a heartbeat. Not only would I recommend her, I just might insist upon her.
4.We really cherish everything about this pregnancy and this child. This is not to say that people who don't experience something like this don't cherish their pregnancies or their children -- nothing like that. But there is something very different about knowing that this little life (who, without any defects at all, is already so incredibly vulnerable and delicate) needs to overcome significant obstacles that 99% of babies don't have to face in order to live and thrive. Knowing he has this heart condition provides me with what I can only call an incredibly starting clarity. Something very significant changes when you know that it requires engaging in a serious fight to keep this little one alive after his birth. Nothing is taken for granted, and every sensation is heightened -- not a single roll, nudge, kick, or moment he's inside me goes unappreciated. I'm not in a hurry to "just be done with it" (even in spite of the fact that I'm regularly sporting some rather large cankles in the insane summer heat). And for me, I must say: it magnified that protective, fighting Mama Bear instinct by about a thousandfold (RAWR).
5. Ewan has no other visible defects or abnormalities. This may seem like a small thing (the heart is a big enough deal, right?), but when the doctors we saw find a heart defect, it is standard practice for them to search for physical anomalies (cleft palate, club foot, etc.). Oftentimes, the presence of other defects gives a stronger indication of a chromosomal abnormality. The lack of other defects doesn't mean there's a zero chance of this, but (based on what I understood from the genetic counselor we saw) the likelihood is significantly reduced that Ewan will face those other challenges.
6. We live in a time where the medical advances are such that kids like Ewan stand a really good chance. It's still not easy -- it's hardly a quick "patch him up and send him on his way" type of job. The cost is significant in every way: emotionally, psychologically, financially -- but really -- without the advances of modern medicine, a lot of kids like Ewan probably would not make it. We have good cause to hope that Ewan has a future with us.
7. It gives me some much-needed perspective. Nobody wants to face this. Nobody signs up for this. Nobody wants their baby to have a heart defect, or any type of defect for that matter: brain, foot, lip, stomach, lungs, missing or extra fingers, or anything. But you know what? Of all the people I've met now who have been down this road, I have yet to find a single one who said it wasn't worth it, and who wouldn't do it again if they had to. In fact, despite all the challenges, many see this as a gift that they wouldn't trade for anything.
8. We're in really, really good company. Largely thanks to social media, we've been connected with many other families who have been through what we're about to face. A large part of what made this feel so entirely hopeless at the beginning was that we had never heard of congenital heart defects, let alone knew someone who had had a child born with one. I remember feeling freakish and weird because of it. I wondered if people would think I had done or consumed copious amounts of something horrible just prior to or during my pregnancy, or if doctors would want to test us for some mutant DNA. When I found out just how common they are (and how 85-90% of the time, there's no clear indication as to why they occur) and met real people who had been through the same thing, it was incredibly reassuring. It doesn't take away the difficulty we will face as a family, but not being alone in this and having others who can relate specifically to what we're facing really, really matters.
9. We've received some pretty amazing provision. This has come to us in ways we weren't even looking or asking for. Ewan and I can be discharged from the hospital at the same time -- this is such a gift, when our original understanding was that he would be taken away by ambulance to Children's Hospital while I recovered from delivery. Now we can go at the same time.
A co-worker with two pre-school age kids was looking to get rid of some baby gear, and lots of it. She didn't want anything for it. We got a lot of things for free that were now on our registry: a swing, a playmat, baby toys, some diapers, a high chair ... and lots of other things. We didn't even have to seek it out. And now someone at my church is giving me her barely-used breast pump (which just so happens to be the exact one that was on my registry). This is such a blessing as I want to make sure that Ewan has the best nutrition possible from day one, and this will help ensure that he gets what he needs when he's at the hospital.
It's so amazing to see how God is providing for even these "little" things -- it gives me hope and reassurance that we don't need to worry about the bigger ones. So while we are still facing the same stresses, we really have much we can be thankful for in the midst of it. I hope I can remember these things, and hold on to them on those days where I'm scared, angry, bitter, and feeling hopeless.
I want to remember Ewan and how his life is so very, very worth all of this.