Tuesday, November 9, 2010


With the oxygen has come a lot of new developments in our lives, and since last night we've been hard at work adapting to our new situation.

We've been through a lot since last weekend, but I think the hardest part of all of this was having to "break up" with our nanny. I called our nannyshare partner family last night as soon as we realized that he was going to have to be on oxygen 24 hours, and broke down sobbing on the phone. I let them break the news to Lilian, our nanny, but called her myself this afternoon, and of course broke down sobbing again. Tomorrow morning we are going over there to say goodbye, and I think it's pretty safe to say that there will be a lot more sobbing. It's a cliche to say that your nanny is like a member of your family, but it's really true. Magnus's love for Lilian was obvious from the way he would start bouncing up and down in my arms after I would ring the doorbell while we waited for her to answer the door. And then she would appear, and he would absolutely beam with happiness to see her. Realistically, I know that part of that is just that he is a very happy and loving kid by nature and he will probably become equally attached to whoever cares for him next, but I know she really loves him, too. And yeah, of course the tears are streaming down my face again as I write this.

We talked about the possibility of her still babysitting for us sometimes, but realistically, there is a language barrier and I don't think we can surmount it enough for her to operate his equipment. Still, I hope we will somehow continue to see her. Maybe someday things will even work out so that she can care for him again.

So during the times today when I wasn't breaking down in tears about having to leave our wonderful nanny, I was scrambling to find a new nanny, and spoke to a couple of promising candidates on the phone and set up some in-person interviews over the weekend. I've also been scrambling to catch up on work, and Iggy has stepped in as super-dad, basically cancelling all his appointments and giving up his work to care for Magnus while we try to find new childcare. Luckily, my parents are coming next week for a brief visit so that gives us a little extra time, and hopefully we'll get everything worked out by Thanksgiving.

With everything going on, another thing we've had to give up on is that we were hoping to go back East for Christmas, but now we're just going to stay here. I mentioned before that the doctor who did Magnus's cath wanted to do his followup cath after the holidays, but then I talked to our cardiologist who wants it done before the holidays. I'm not sure who will win out, or when we'll know, but between that uncertainty and the challenge of trying to fly with a baby who is on oxygen during the holiday rush, it just didn't seem tenable. I think Iggy's mom is planning to come out for Christmas, which would be great, but there are a lot of other relatives we'll miss seeing. Luckily, Magnus is too young to know when Christmas is anyway, so we'll just have to celebrate "Christmas" with the rest of the family the next time we see them.

As far as Magnus is concerned, I guess our first 24 hours on home oxygen haven't been too bad. Dealing with him being tethered to the compressor is somewhat reminiscent of trying to vacuum the house while minimizing the number of times I have to unplug and replug the vacuum cleaner, a challenge with which I am quite familiar. I guess this is one time that having a small house works in our favor! One of the worst things about the compressor, though, is that it's really loud, and of course we have to run it 24 hours a day. Luckily, we can leave it out in the hallway and then shut the door to Magnus's bedroom while he's sleeping which mutes the sound significantly, but the only other rooms in our house that have doors on them are the bathroom and our bedroom, so it's loud everywhere else. But I guess we'll get used to it. Magnus did get fussy and pulled his cannula off a few times, but he didn't seem to be too traumatized by it. The next thing we really have to do is to try to find a stroller that has a big enough basket to hold our portable oxygen tank so that we can take him out for more than a couple of hours at a time. We really want to make sure that his world doesn't get to be too circumscribed now that he's on oxygen and it's harder to take him out.


  1. Jenn, I'm so touched by this and your family's attachment to Lillian. She sounds like a very special person. As far as the oxygen goes, can you get a portable backpack (like you see people using all the time at the mall)? They don't seem to be that heavy because you see elderly people carrying them around. That way you wouldn't need a special stroller and he could go wherever you go.

  2. I see you as a mountain climber, on a very long journey. You reach a peak, and beyond it is yet another, and another. The point is, you are charting the course, plodding along, and doing a remarkable job. It will be good when your parents get there to establish a base camp for you. Take that opportunity to get some rest. I have no doubt you will contimue to meet the challenges of this journey. Thanks for somehow finding the time to keep us in the loop.
    Do not despair about the sitter. I can tell you that Emily's sitter is still very much a part of our lives, after all these years.

  3. Boy I couldn't agree more with Nancy, who made the analogy of you as a mountain climber on a long journey, and what a good climber you have been! I'm so impressed with your strength and ability to advocate for Magnus, and as my friend Carolyn said, just yesterday, you are always so optimistic and focused on the positive under incredibly difficult circumstances. We're all so proud of you!

  4. Donna had oxygen around the house, but we never ended up needing to use it... it was there from hospice "just in case." We got all trained up on it, though, and had to put the placard in the window warning firemen that there was an oxygen tank in the house.

    What can I say? "You'll get used to it." It's amazing what you can get used to (you know that) especially if it's having a positive effect. You guys have come so far, and done so well, and you know you'll keep going for as long as it takes.

    Visit the old nanny when you can. That's my suggestion, I guess. It's nice to keep as many good things consistent as you can, especially when there's so much upheaval and change. Donna always liked to go and visit her old sitters, even just for an hour. And the more people who care about Magnus, the easier it is (psychically) for you as parents.

    Keep going! Hard work! You rock!

  5. Apologies in advance -- I'm hopelessly inarticulate when it comes to expressing myself. I can't seem to find the right words to say how much I admire all that you and Iggy and Magnus have accomplished and continue to accomplish, and how much I wish that you all didn't have to keep proving yourselves to be such rockstars all the time.

  6. Dear Jen and Iggy: Carol and I are really worried about Magnus, and about the two of you as well. We are sorry we won't see you at Christmas. We understand. Carol has asked Lama Sonam for help. We think of Magnus constantly. Please give him an extra hug for us.


  7. I'm sorry you had to lose your nanny and I hope it's just for now. I'm sure Magnus will love his next caregiver too, but it's still very sad, and I wish this road were easier for all of you.