2016 retrospective

I mean, where to I even begin to look back on 2016? I am not sure I can even put words to how hard it was.


My great joy from the year is that Sibyl was born and showed us her sweet growing self. She learned how to show us her tongue on Saturday, the same day as the Women's march.

What a great way to begin 2017. The march, I mean, but also Sibyl's tongue. I hadn't planned to go to the march, mostly because I am afraid of being shot. Seeing how huge the turnout was all over the world made me wish to be at the march in Denver, though. Instead I took Sibyl to the pediatrician for an urgent care visit. She had been up the entire previous night coughing and with a high fever. The poor baby. Iris had a 3-hour nap on Saturday, I assume she was fighting the same germs.

Fever nap

Three-hour nap

I am scheduled to go to San Francisco this week, two nights away. Just to make sure that I'll feel terrible leaving, Evan managed to incapacitate himself and will certainly need surgery. My dad is here for a meeting on Tuesday and will stay to help.

Knee injury. Will need surgery.

Iris started a new dance class on Sunday. Watching these girls grow makes my heart burst.

My hopes for 2017 are all about reconnecting with my "self" and my "selfhood." Evan gave me a series of six massages for Christmas, one of which I have used already. It would be nice to begin a regular exercise regime and meditation practice. Iris has started listening to a mindfulness for kids cd every night so one easy way to begin is to listen to some part of that with her. She listens to Sitting Still Like a Frog. 

Oh, and I'm defending my dissertation February 15. I can't believe that is happening. I started the PhD program in 2010. What a long road it's been.

eight months

After a couple months of mostly no sickness, we three girls have all come down with some stomach bug and Sibyl has an added cold. We haven't been sleeping well, partly because Sibyl is teething and partly because I haven't encouraged good fall asleep habits for her. I can't bring myself to let her cry it out.

She is pulling herself up and is ready to walk any day. She has 4 teeth and is about to get some new ones. She is babbling a ton and seems to say a version of "all done" when she's all done. I'm less militant about using sign language with her (like I did with Iris) but they also do it at school so I'm hoping that she'll start using signs for "milk" and "more" soon. She loves to drink water from a glass.

As for Iris, our neighbors passed down a strider earlier this summer and she loves to ride it. She also started a creative movement dance class earlier in September. They mostly jump around to songs and then learn one or two ballet positions. At the end of the class they curtsey.

We went to our first family volleyball game earlier in the month. The University of Denver has a varsity team. They played Georgetown (and DU won). I miss playing volleyball a lot. Someday in the near future I hope to start playing in a club. (I also hope to start having regular family sing alongs and start playing guitar/piano regularly and... the list goes on.)

Iris is supposed to finally get her routine brain (and aorta) MRI the first week in October. We've had to reschedule it a million times this year due to illness, snow, and misunderstandings on the part of the schedulers.

the dirty projectors dance

Summer is upon us. The last week was very hot and Iris spent much of the time in diaper only. She is increasingly active and loves to run across the room. She also loves music, as you'll see below. She is dancing to "Impregnable Question" by The Dirty Projectors. 

We have a pulmonary check-up in about a month. Iris continues to have increased oxygen needs, her happy spot is somewhere between 1/4L and 1/2L. This is more than double what it was in October of last year, when she was down to 1/8L. I try not to think about this troubling fact very much because there's nothing we can do about it and the doctors are firm in saying that she will, eventually, grow out of the need for oxygen supplementation.

Iris was sick with a stomach bug again. It seemed worse than the stomach bug at the end of April, if it was in fact a stomach bug. She lost some weight and that really worried me. She's much better now, though, and has gained back the weight she lost. She really has the appetite of a horse.

When Evan feeds her, he models the deliciousness of the food by pretending to put the spoon of food in his mouth and gives a satisfied, "Haummm!" grunt that is supposed to suggest satisfaction. The effect has been that Iris has started giving the same sound effect when she eats something she likes. It's very adorable. She also has heard me say "Achoo!" after she sneezes a lot so she has started mimicking that noise by saying, "Atoo!"

The last piece of news is that we've had to confiscate all books from Iris's toddling radius for the time being. She is teething and has found books to be particularly tasty. This means that she is literally devouring books. She is usually pretty loud when she plays, if not squealing or babbling, then she is banging things together. Sometimes when I'm in the kitchen and not watching very closely, I realize that things have suddenly gotten very quiet. This is never a good sign. And recently it has meant that yet another book has been sacrificed for the sake of Iris's teeth. 

33

Evan brought home flowers on Monday in honor of my birthday. Cacti, also. Yes, we have a red wall in the living room.

'

We then had a family dinner out at an Indian restaurant.

 

 

Being 33 feels pretty good, all things considered.

 

Iris had an appointment at the Heart Institute and also met with the pulmonary nurse. It was an exciting meeting. They have concluded that her pulmonary hypertension is very mild and that she has likely outgrown her Sildenafil dose. So we can stop giving her Sildenafil. This is the medication that I had been giving her three times a day, once at 4:45 every morning. More sleep for me! We will also try her off Lasix in mid-December, about a month before going back for the next appointment. Otherwise, she's staying on Prevacid and Digoxin for a bit longer.

The other exciting news is that we are to start weaning her oxygen. I have had her back up to a 1/4L for the last few days because she seems to be showing signs of a cold. Evan and I both have some lingering sickness and it seems she got a bit of it.

When we first got the pulse ox for home use I was supposed to keep her oxygen saturation level to above 94%. Today they decided that we can lower that a bit, to above 92%. I don't totally love this as a new threshold but I will start weaning her a bit more once she has recovered from this most recent cold. They also mentioned that some babies have to have oxygen while sleeping for years, even after they are off it while awake.

And, she is on track with her weight. I had been quite worried about this, particularly since I've been sick and not producing as much milk. She weighs a whopping 6.61kg (14lbs 9oz).

 Here she is in her turtle seat.

iris dances

Iris is a ball of energy. This video is from yesterday before her doctor appointment.