I’ve given a number of updates on Felix over the last few weeks, but I haven’t really offered an update on us and what we’re going through. I figured I’d paint a picture of our lives right now. Though of course the two are totally tangled together.
As I’ve explained, we’ve mostly been sitting through the waiting stage of Felix’s treatment so far.
Our first hope was that Lydia would be a match and Felix would be able to get a bone marrow transplant from her. So we had to wait for typing. When that didn’t work out, we had to wait for paperwork to go through for enzyme replacement therapy, as a short-term solution until we can pursue the next stage of treatment – either gene therapy or an unrelated donor bone marrow transplant. We’re still waiting for that to start. Then we have to wait and see how he responds to the enzyme replacement.
Meanwhile, since his diagnosis last month, the doctors have been closely monitoring him for any infection. Every time he shows the slightest sign of possible illness, he gets a flurry of tests and examinations, followed by various interventions (antibiotics, oxygen, feeding tube, etc). In the meantime, we are often waiting for results, doctor visits, further testing, examinations, etc.
We spend a lot of time in Felix’s room, both to be with him and to await news from doctors. We’ve also taken care of his feeding, both when it was by bottle and now that it’s through NG tube. We try to have at least one of us in his room at all times during the day. Often, we’re both in there. Waiting.
Our main activity, if you will, is coping. Felix still sleeps a lot, and doesn’t need much besides feeding, diaper changes, cuddles, and company. (He’s seven weeks old now.) So we don’t have a lot to do, though we feel exhausted most days. It’s tiring, waiting on tests and discussing life-or-death options for our child. It’s draining, spending time in a sterile room with a baby who’s tangled up in tubes and wires and attached to machines that beep and blink all day and night. It’s even tiring having to spend our days wearing masks and gloves and gowns.
We want to stay near him and nurture him. But we get tired of sitting around in his room, and we know we need to take care of ourselves, too. Trying to balance caring for our baby, ourselves, and each other is tricky. (At least we’ve totally given care of Lydia over to family. It’s one less thing to worry about.)
So when we can, we go out for nice meals. Often a nurse will agree to take one of his feeds and stay close to him while we’re out (most of them are absolutely lovely.) We watch a lot of TV while in his room. I like watching stand-up on the Comedy Network, and we’re re-watching The Office on a laptop on DVD. (A significant detail: we don’t have wi-fi in his room. So no blogging, Netflix, or social media when we’re with him. Which is almost all the time.) We try to keep in touch with friends and family online and keep them updated using computers in the Ronald McDonald Family Room. We try to get our minds off of our difficult situation . . . but feel guilty about leaving our baby alone in a hospital room. It’s a tricky balance.
Two weeks ago Ben and I started spending the nights in the McDonald House, together. Before that, we took turns or shifts sleeping on the couch in his room. (We still have to wear the gowns, gloves, and masks if we do that.) A couple of nurses had to talk us into letting them take care of him for the night. He doesn’t cry much, and they promised to keep a close eye on him. We give him his last feed at nine, put him to bed, and go across the street for night. I hurry back to him first thing in the morning. Ever since we started doing that I am much more emotionally stable.
Lydia visits on the weekends when either one of our parents bring her. Twice, she has stayed the night with us. It is both glorious and heartbreaking when she visits. I remember how very much I miss her.
Otherwise, we video chat with her about every other day. But it always ends with both me and Lydia crying, so it’s kind of hard to want to get started.
I haven’t seen my home or cooked a meal in over a month.
Our emotions go up and down depending on how Felix is doing. When he’s stable, I’m generally pretty content and life here almost feels normal. We joke around and get lunch and do laundry. When tests come back with scary news I spend the next 24 hours weeping, until I adjust to our new reality.
I still cry almost every day about not being able to breastfeed. Until this afternoon, I was still pumping every four hours throughout the day, just in case. But I just got confirmation that I will definitely never be able to breastfeed Felix. It’s just too much of a threat to his immune system. I’m still working through the emotions.
We have to take it day by day. If I try to think too far ahead I get anxious. We have no idea what’s in store for us.
Today was a hard day. Yesterday was okay, though. We’ll see about tomorrow when we get there.