seven months

Sibyl is seven months old. Where has this time gone. I love having her as a baby so much and I'll definitely miss her squishy baby-ness as she continues to grow up. I will not miss the sleepless nights, however. She has been sick for the past week (right in time for me to take some days off of work for a dissertation vacation) and we've all been sleeping terribly.

7 months old!

Sibyl has started crawling (forward). She has been crawling backward for a few weeks but is now figuring out how to move forward. She has had trouble figuring out how to use her knees because she loves standing so much that she just wanted to walk around in a downward dog pose and would end up toppling over. 

Evan remarked to some friends that crawling style is like a fingerprint: every baby has her own unique style and no style is identical. I like that idea. 

Sibyl has also started saying "da." She's close to saying "Dada" but not quite - this is about the same age that Iris started babbling too. One of her favorite things to do is to whack me really hard when I pick her up. She whacks everything and I think I've decided that she's trying to get a sense of what the object is made of and what sound it makes. 

Have I mentioned Sibyl's favorite toys? She loves to hold these magnetic connectors as seen below. She goes everywhere with them and never lets them go. She'll toss all her other toys around but inevitably it seems like when I pick her up and take her to another room she has a connector in tow.

Sibyl's favorite toy

As for the past few weeks, we've had some visitors. My great Uncle Bob, who is 93, came to visit this part of the country for a while. Iris Skypes with Uncle Bob occasionally when my mom is visiting so she was VERY excited to meet him in person. My mom visited for the first part of August because the girls had no school and I needed someone to watch them. 

Iris and Uncle Bob

Grandma and Iris

Grandma and Sibyl

Evan, Uncle Bob, and Sibyl

Daddy & Sibyl

Grandma, Uncle Bob & Sibyl in a sleep sack

Mama and girls

I've been fairly exhausted and everything seems more dire when not sleeping enough. I finally have gotten some good nights of sleep this week and the world seems like an entirely new place. Iris has been sleeping well; I have almost nothing remarkable to report about her. She is scheduled to get a brain MRI in a few weeks. I keep my eyes out for new research articles being published about her condition. Like this one. Except - remember that Iris has R179C not R179H. There has also been some activity on our Facebook group about whether we should allow our kids to go on roller coasters and trampolines. The general wisdom is, "no." 

Our next door neighbors have two boys about Iris's age and they have a big trampoline so I've had to tell the mom that when Iris plays with the boys we can't do the trampoline. 

 

She also has recently shown me that she can write all the letters in her name. Almost in the right order. The really surprising thing is that she has no trouble doing the "S" correctly or the "R." 

 

Iris is such an amazing soul. I've been reading a children's book about Frida Kahlo to her and she loves it. The reason she loves it is because Frida gets sick and has to be in the hospital. I'm not sure what this means, but I take it as another example of Iris learning empathy and finding people who have had experiences like her own.

easy baby

I think Sibyl wins the award for being the easiest baby in the world. At 9 weeks old, she is already sleeping through the night -- from 9pm to 5am, or thereabouts. She is gassy and spits up a lot but I cannot even begin to describe how the difference feels.

I sometimes bring Sibyl with me to Iris's school for drop off or pick up and Iris loves to show her sister to the other kids in the class.

I went back to work when Sibyl was 6 weeks old and am working just 15 hours per week until the end of May. It's a little hectic, but it's been good to get out of the house. I feel a little guilty for not being at home more and so I try to hold Sibyl and talk to her as much as I can when I'm at home. 

Iris has been doing a lot of growing up lately, and it's almost all stuff she's done independently of me. Evan has made a game of teaching Iris to say her "L"s and he's also taught her to blow her nose. At school she has learned to put her jacket on by herself and I'm sure a bunch of other things I can't think of right now. 

the new year

In preparing to write my annual "welcome new year" post I re-read my posts from the past two years (here and here). I hope it comes as no surprise to anyone else that some of what I wrote turned out to be wrong.

It's benign stuff, for example, at the end of 2014, Iris wasn't sleeping through the night as I thought. Turns out that Evan had been staying up late to work and had been giving her a bottle around 9:30pm every evening and that would get her to 4:00am. Now, however, I am fully correct in saying that Iris IS staying in bed all night long (even if she's not asleep the whole time). We are bribing her, to be perfectly honest. She gets a fruit leather every morning if she stays in her bed all night long.

The "I stayed in my bed all night long" prize. Grape is her favorite.

As she gets older, I'm sure I'll come to regret some of the bribes and other methods I've used to elicit good behavior, but for now the sleep is too sweet to sacrifice (says the lady who's about to give birth any day). Her sleep patterns have been totally weird this year and was sometimes staying up until almost 9:00pm, which was awful. We had a sleep study done at the beginning of December to find out whether there was any physical reason that she wasn't sleeping well. I don't recommend the sleep study to anyone.

They found that she has very mild obstructive sleep apnea. It is so mild that Evan and I decided not to follow up with anyone about it; my perspective on her sleep has improved now that I'm getting more sleep.

Another milestone we reached with Iris is that she is now only wearing big-girl undies. I hesitate to say that she is potty trained. We're not in a rush and I want her to keep tabs on her own bodily urges. She doesn't stay as hydrated as I'd like, particularly since it's so important for her medical condition. But she does use the potty when she needs to and otherwise fights us every time we suggest that she go. 

The spunk never stops.

To be fair to her, she is much better about using the potty at school where she indulges in peer pressure to conform. She started school at Temple Sinai preschool two days per week in April and moved to three days in September. Her teacher is a treasure to us and makes Iris feel loved and secure while she's there.

Watching Iris's social development has been a total joy this year. Her teacher tells us that she is very empathetic with the other kids and tries to make new kids feel welcome and comfortable. When she is playing with older kids she wants to do everything identically to them. She'll repeat every action and every word they say. Part of me hates this, of course, since it can produce such bad results in adolescence. But for now I think it makes total sense and she has learned so much (some good and some bad) from other children. 

At the end of 2014 we had just gotten Iris's ACTA2 r179c genetic diagnosis. We met with the researcher who discovered the mutation on New Year's Eve of 2014 and had a whole new (and pretty unwelcome) world open up to us. I think it took us a good seven months to adapt to it all. I amassed a set of reading material about death and grief, some of which remains unread. Somewhere along the way I got my fill.

I had made up my mind to quit my job and to quit my dissertation and focus on trying to advance research on this genetic mutation and the associated risk factors (i.e. pediatric stroke and stenosis of the arteries). And then at some point I realized that choosing that path would be too stressful and that I couldn't let this diagnosis govern our whole lives.

It's probably not a coincidence that Evan and I joined a church. Evan had been going with me to First Universalist of Denver prior to our receiving the diagnosis and he had even suggested we join before then, but it took us until July to take the plunge. Evan probably hates that I'm writing about this as he hasn't fully accepted that he is what one might call a "church-goer" now, even if it is a church where people with atheist/humanist belief structures are welcome and attend regularly. It's an easier adjustment for me since church has always been a part of my life and my identity and I know that weekly attendance makes me a better person.

The latter part of 2015 went by in a flash. We took trips to New Mexico (twice) and to California to visit family and we welcomed Evan's friend and his family to live with us while they adjusted to life in Colorado. Evan got to climb his first 14rs (mountains that are over 14,000 feet in elevation) and I was jealous that I had to sit at home and be pregnant. And then we bought a house and moved!

As we begin 2016 I haven't fully grasped the huge change that is about to come once this baby arrives. I have 12 weeks of parental leave from my job that I'll chop up into smaller bits to last until the end of May. After that I'll return at a slightly reduced schedule. We'll be doing a lot of improvising, I am sure.

One goal we (I) have for this year is to get off the internet and our phones a bit more. I'm not sure how drastic this will be, but I'm hoping to replace screen time with family sing-alongs.  

twenty-two months

Iris is finally starting to sleep better in her big-girl bed. Around the beginning of the new year I bragged that she was starting to sleep throught the night, "for real." Well, that didn't last too long. Especially since we changed her bed around on her. She loves her bed, but it's hard for her to stay asleep sometimes. We've tried to make her bedtime routine very, very predictable and I've gone back to the idea that she still needs milk around 9:30pm or 10:00pm in order for me to have a semi-restful night. Evan is the one who usually gets her ready for bed, brushes her teeth, washes her face, and reads to her before giving her milk. Tonight as I was leaving her room she said, "Daddy, come!"

When not asleep, Iris prefers to run everywhere she goes. She has also managed to get a couple time outs for jumping around dangerously on the couch. At twenty-two months old, she repeats everything we say (for better or worse) and she is really starting to perfect the tantrum. Her latest obsession is my brush. She threw a little fit this morning when I tried to give her a comb instead of the brush. SHe likes to try to comb her hair by herself, but that just lends to the unruliness that is her hair. 

We have been working on our yoga moves -- the latest attempt is tree pose. She can balance on one foot for just a split second. She really loves to do happy baby pose. In order to get into the pose she kneels down on the ground, puts her head to the gorund first (so that she won't bang her head when turning over) and then turns her body around so that she is on her back. Then when she has a hold of her feet, she yells, "Happy Baby!" 

Twenty-two months old

Balancing on one foot

The weather here has been a little insane. We woke up to snow this morning (Wednesday) after having had several days in the 60s. The good weather inspired Evan to plan a super busy weekend full of hiking, bike riding, and an attempted swimming trip. Iris did really well on the hike, possibly because I was trying to feed her for the entire 3-mile trip. Evan also started singing a song to her that seemed to keep her entertained. The words went something like, "Hiking, and mommy, and trees, and sandwich, and birds, and mommy, and hiking, and backpack, and Iris." He also had so much energy that he was running back and forth with her when she started to ask to be let out for a little while. He would bounce up and down with his arms out like wings. She loved it.

Backpack walk

Roxborough State Park

I mentioned previously that I had gotten a glass flying pig from a mystery person at work. Well, this same person (I assume) sent another little gift a week or so ago. I'm not sure what to call it, so we just call it "This Guy." Iris calls him "This Guy" now, too.

This Guy

Hugging This Guy

The handwriting of the mystery gift person

As far as medical things go, we see Cardiology on Friday. Iris will have an echo and we hope to see no increased dilation in her aorta, and continued lack of pulmonary hypertension. She is now on her full dose of losartan (when we can manage to remember to give it to her). It looks like we will be starting Iris in day care in March, which Evan and I are both excited about...though there are many logistics to be worked out. Evan still hasn't actually seen the day care yet, so we'll visit it on Friday before the Cardiology appointment. 

Then, next week I'll likely take her to the pediatrician to get her second to last dose of Synagis, which is the semi-vaccine for RSV. It's way worse than all the other vaccines -- way more of it, and it's two big shots that go into each thigh. Iris has been asking about shots a lot lately. We've been reading "Elmo Visits the Doctor" book a lot and I think she's going to handle the next round of shots okay... but they're still awful. But I'd rather subject her to the trauma of getting the shot than to the trauma of being hospitalized for a severe case of RSV. And let's just leave the whole talk of measles for another time. 

At twenty-to months, Iris's favorite things are her stuffed animal bears, looking for buses when we go outside or are in the car, singing "Wheels on the Bus," and saying "Call Daddy" to get me to call Evan on the phone. 

farewell 2014

I have been resisting the writing of this end-of-year post. Perhaps in part because it's hard to remember what was happening a year ago. I look through my photos from the past year and I see lots of smiles, lots of family trips, and a few trips to the hospital. But I can't really get a grip on what 2014 was. Maybe this sense of disorientation is just a ripple effect: the year ended with a thud. The ACTA2 news has overshadowed most of what I remember about 2014.

I can say that -- on the whole -- 2014 was better than 2013. I think Evan would agree with me that we end the year with an increasing sense of being settled. I defended my dissertation proposal, I started a new job that I love, Evan still loves his job, we are both committed to having more fun and getting outdoors as much as possible. Meditation is creeping into our lives. And, perhaps best of all, Iris has started sleeping through the night, for real. I'm giddy with excitement at the prospect of future nights of fully restful sleep.

As I look ahead to 2015... I mostly see me turning 35. Yikes. But well before that, I see many trips to the hospital, many tests, and many conversations about what lies ahead for Iris. We now have an idea of the road we're on, and we know we are at the beginning.

jemez springs visit

At the end of July we took a trip down to New Mexico for a short visit. Evan's sister and her family were staying in a cabin in Jemez Springs (well, really La Cueva). We stopped to visit my dad and brother since they are so close to the Jemez. 

Pit stop in Questa, maybe? I forget where. Iris was fascinated with the trucks

Evan and I had the bright idea to try to leave at 4am to make the long drive with Iris. The drive down to New Mexico wasn't so bad, we arrived at my dad's house around 7 hours after leaving home. Our trip back up to Colorado was not as easy. 

Iris can put her hat on all by herself. Backwards, but on.

We left at 5am and Iris basically didn't sleep the whole trip. It was hard to keep her happy and entertained while also being stuck in the car seat.

We spent two nights in the cabin and one night at my dad's house before heading back home. Iris didn't sleep well, so Evan and I were pretty exhausted the entire trip. I think the highlight was getting to spend time with family. Iris's cousins were so sweet. It is always really helpful to talk to parents of older children. It's good to get the perspective and advice.                       

Iris is smiling for the camera.

My dad and brother came up to the Jemez for lunch on Sunday. Luckily, my dad brought his camera. I failed to take many photos during the trip. Katherine took some, thankfully, too.

Uncle Miguel is entertaining Iris here while the rest of us order our food

Another big smile for the camera

Obligatory family photo

 Overall, we were pretty exhausted after this trip. We have recovered well, but are in no hurry to take any more trips for a while. We have Evan's work trip coming up at the end of August, but we are hoping that Iris's nanny can come with us so that Evan and I can get a little break.

fifteen months old

The summer is flying by so quickly. There was a heat wave recently that made sleep extremely difficult. Evan got a portable air conditioner for the upstairs. Luckily cooler weather means that I'm getting more sleep, as long as I don't have any caffeine during the day.

Iris and her juice

I took Iris to the Mordecai Children's Garden at the Denver Botanic Gardens on Monday. There is a man-made creek to wade in that she loved. She also met another 15-month old girl named Iris! The mothers were amazed. 

Iris and her juice, again.

Iris is adding new words to her vocabulary every day. So far she says, "Mama" and "Dada," obviously, but her most recent additions are "on" and "up!" She's a little confused about "on" and "open" so she just says "on" when she wants something opened. And, well, she says "up" when she wants down. Her other words are a little hard to understand for the uninitiated. "Gaga" means car or dog; "gugu" means cookie; "dudu" means juice; "nana" means banana, or Nonna (Evan's mom); "baba" is anything starting with a b, mostly bear, or ball.

Her sign language is also pretty good. She uses the signs for "more"; "help"; "all done"; "milk"; "Daddy"; "owie" (or "it hurts"); "birdie"; and "book." And, of course, she points and grunts at things she wants.

Iris and her juice, again.

 Perhaps most surprisingly, she has figured out how to say "I don't know" and also it's appropriate usage. As in, "Iris, where's your bear?" To which she responds, "I don't know," if she actually doesn't know. I had taught her the sign for "I don't know" so she also uses that, but mostly just for fun.

A few days ago I had been out for a bit and when I got home I found this baby, below. Everything looks fine, right? Well if you look closer, you'll see her diaper is on backwards. Evan claims not to have noticed that he put her diaper on backwards.

What's wrong with this picture?

As for other happenings, Evan and I went on a double date with some friends last weekend and had dinner at a French restaurant after exploring Hudson Gardens in Littleton. We also had our first visitor from Pennsylvania. A friend of mine from my PhD program was making the cross-country trip to start a new job in California and he stayed with us a night. It was so good to catch up with him and it got me very motivated to keep working on my dissertation.

eleven months old

Iris is almost too big for the onesie I put her in every month for her month completion photos. I took her for her Synagis shot earlier this week and she weighed 19 lbs, which means she's scrambling up the growth curve. 

 

She had an amazing night of sleep last night after a very long run of terrible sleeping nights. Last night she was only up once at 2:30am. Granted, she was wide awake and was not at all interested in sleeping, which is not the norm, but at least it was only once. More recently it has been more like she's up every 2 to 3 hours. One night I made the mistake of eating some ice cream with chocolate chips in it and I think it got into her system. She was up almost every hour the whole night. 

chewing on oxygen

This is Iris's new favorite thing to do. Technically, the oxygen is still in the right area, but it's probably not having the intended effect.

I try to stop her as much as possible but it's not clear to me how you discipline a three-month old in this regard. I mostly rely on trying to distract her or by giving her something else to put in her mouth. My mom thinks she is in the early stages of teething and it seems like I've felt the start of some teeth in her gums.

Here are some of her without her oxygen on. It's easy to forget what she looks like without the tube running across her face.

Iris is basically sleeping through the night now, by which I mean from about 8:30pm to about 7am. I still have to get up around 3:30am to give her a dose of Sildenafil but otherwise she'd sleep straight through the night. I also take that time to nurse her but if she doesn't nurse properly then I have to pump, so I am up for about an hour total. Evan and I are both quite pleased with how well she sleeps and naps. She fusses just a little bit right before she falls asleep and it's really out of character for her to cry for extended periods of time. This is a drastic difference from before the surgery and even just after the surgery when I think she was in a lot of pain. 

Since my mom is in town Evan and I have been able to do a lot of grown-up things. We went to yoga Thursday night, tennis Friday morning and had a date on Friday night. Unprecedented.

It looks as if we are going to close on a house by the end of July. We have been in negotiations with various housing people since May and we are hopeful that we will own a home in Colorado shortly. The house needs some work so we won't move in right away but we both look forward to finally settling somewhere after having moved so much in the past few years. I think the official count is that we have moved four times in the past three years. Exhausting. But after move number five I hope we don't have to do it again for a long, long time.

normalcy

Life is looking increasingly normal. In the last week her vomiting has subsided dramatically and I've felt increasingly comfortable taking her out for social engagements. We had lunch with George [the all-purpose professor] last week and over the weekend Evan and I took her out to dinner after stopping by one of his co-worker's house to see the renovations planned there. We went to the park again on Sunday and she chilled out in her sunglasses. She is beginning to get some new vocalizations - cooing and shrieking (with delight). Both Evan and I are figuring out how to incorporate exercise into our routine. He was able to go to a jiu-jitsu gym on Saturday and plans to go a few more times this week. I only went to yoga once this week but did get in some good runs.

I have recently discovered that Iris's signals for "I'm tired" are nearly identical to "I'm hungry." Having discovered this, I've gotten much better at helping her get sleep during the day. This has really helped alleviate her afternoon fussiness.

I am working on writing the entire story of how we discovered Iris's health issues. It is taking a while.

Today's goals: exercise, address emails...it's a low-goal day. I hope to get a library card this week, though.