In the hospital in Virginia yesterday my older sister did the unfortunate duty of telling my Dad, now that he’s feeling a little stronger, that he’s been diagnosed with terminal bone cancer. She said it was the saddest two hours of her life. She told me how my Dad had a hard time digesting it, as anyone would, because it’s not something anyone wants to hear, at any point in life. She also said that, although he was taking it hard, he talked to her only about happy things, simple things—spending time in Vermont, his dogs, his kids—and how this impulse to talk so openly about the things he loves in life and the things he is proud of, actually made the talk that much sadder.
And all this sad talk with my sister made me hang up the phone and think about sadness. I don’t think about it in a negative way. I think about it as something as necessary as oxygen, and how, without it, we might never really live. I’m not trying to be profound, just honest. Over the last 82 days I have felt different degrees of sadness, but because of those feelings, and how they inevitably make me more reflective, my experience of raising a son for the first two and half months of his life in a hospital has been richer.
David had a barium swallow yesterday to test his esophagus, and to try to identify the unexplainable thing the cardiologist found behind his heart. It came back normal. So they did another ultrasound to look again, and they found nothing. What they saw the other day was in fact just something fleeting, perhaps a little reflux at the time of the image, but nothing to fret over. The cardiologist used the best acronym for it yet. He said that what they found was just a little VOMIT (victim of medical imaging technology). I had hoped they would find what my friend Siri thought they might find: that David had an extra heart valve for love.
So with that potential hold-up all cleared, we’re headed home today with a healthy 6 and ½ pounder! It’s been 82 trying and tiring and hopeful days but he’s finally coming home. The way we think about it is that he’s coming home 11 days earlier than his original due date. If I had carried him to term, we would be ecstatic with joy to bring David home from the hospital today. However, our feelings are now more mixed than that. But not more mixed like more confused, more mixed like more full-flavored. When we walked out of the hospital last night to get one final good night sleep at home, Graham and I barely spoke. We both felt a strange nostalgia, like something was coming to an end, but that we should be happy it’s coming to an end and that we should have been skipping down the hallways. We are happy to bring David home, of course; we’re also nervous, as anyone would be. David will be hooked up to oxygen through the winter and perhaps longer, depending on how he continues to recover from his lung disease. We learned how to use all of our home equipment, and we have our own little monitor to bring home that beeps when his oxygen saturation drops too low. So we’ll now spend sleepless nights waking up to either a crying baby or a monitor that sounds like the worst alarm clock you could imagine, set on the loudest setting you could imagine, and we can’t turn it down, and we don’t want to turn it down; we need to hear it for obvious reasons—to make sure David keeps breathing.
Graham and I barely spoke as we walked out of the hospital last night because going to the ICN has become so much a part of our routine, and we realized suddenly that we’ve built a small attachment to it—to the community of people we now know there, and the daily interactions we’ve had. We’ll miss those interactions. It has also made us re-realize how lucky we are to have so much support, because our supporters have driven our positive attitude. Not everyone with a child in the ICN has that same support, and we’ve seen how much harder the whole preemie process can actually be, and we never wish it for anyone.
Around 6am yesterday morning I sat nursing David in a rocking chair next to his crib in the nursery and I thought to myself how far we’ve come. It has been these recent early morning feeds that I’ve come to look forward to the most, with the lights turned down low, the other babies all sleeping in their cribs and the night shift nurses, tired and ready for shift change, all off typing their shift notes quietly at their computers. I have found that this is the time when David feeds best, because he’s the most coordinated and calm and so am I. It’s so quiet. The first time I held David, back at the very end of October, on the tile side, where all the lights stay on and the monitors never stop beeping, the nurse told me that he would be able to feel my mood, whether I was calm or anxious, and he would respond to it, so it was best for me to try to stay calm. I couldn’t stay calm then. I was so scared because he felt so small and fragile and I always thought deep down that he was going to die. But I sat there yesterday morning and I held him close and I thought how far he’s come and how far I have come—to be so calm and content and cozy, to just be sitting there together, alone, with the curtains drawn around us and no need for any help.
I once told you that the support you’ve given us has come to us like steady and stable breaths on a ventilator. Without it we would never have been able to see this experience for what it has been: a chance to look a little closer at things, to look at things for what they are and to appreciate that.
With David coming home today, I have to say that this is the end of my blogging. David’s like a real newborn now, so from now on my blogging would just be about us and our son at our home, and that would be boring. I have included some final photos as a slideshow. They show David in all the stages he went through, from 26 weeks and 6 days to 38 weeks and 3 days old.
I don’t think David will remember any of this time, and all of the intensive and sometimes painful care he received. His body might remember it, and he may never wake up to an alarm on time (that will be his excuse as a teenager), but we will certainly remember it, and we want to remember it, for all that it was, the good and the bad, because it has certainly shaped us as a family, and although I wish we could have had a normal pregnancy, sometimes it takes a little sadness to really keep us awake.
Thank you, all. I’ll miss writing this blog. Graham and I are headed home to spend some snuggle time with our son. That’s what he, and we, need most.
J & G & D