nine, ten, eleven months

The end of the year has gotten away from me. Sibyl is now 11 1/2 months and is almost running in her own baby way. She started walking around 10 months old, about the same time as Iris but maybe a week or two earlier. She is babbling a lot and says babble-y things that sound like "What's that?" and "All done."

October, 9 months

November, 10 months

December, 11 months

My mom moved to Ft. Collins (hooray!) and we drove up to visit a few months ago. On the way home we had to make an emergency potty stop so we unexpectedly had our first family trip to McDonald's.

Horsetooth Reservoir

First McDonald's outing

We had a short hospital stay in October for Iris. She had adenovirus along with some other viruses. Treatment for respiratory illness consists of pulmozyme (usually given to cystic fibrosis patients), a vest that jiggles her around, and regular deep suctioning and nasal aspiration.

Sister visits

Sister visits

She was able to get home by Halloween and even go to the dress up day at school. Iris was a koala, which was the same costume she wore as last year. At first she said she wanted to be a blue ghost but then kept changing her mind so I floated the idea of wearing a koala costume and she was totally on board with it.

"Koalas eat you-ka-lick-tus"

Doggie

We went trick-or-treating around the block with the Beckers, who managed to have a theme for the whole family: Pokemon Go. Iris loved trick-or-treating and then forgot about the candy she had gathered by the next day.

The first pumpkin I've carved in years

The Beckers are Pokemon Go themed

Pokemon Go characters

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.

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.

six months old

Sibyl is six months old. The time has gone by so quickly! We've all adjusted to the routine of going to school and both girls love their classrooms. Sibyl has two teeth coming in and possibly a third. She has started eating peas, green beans, oatmeal, and cream of wheat. Everything that comes close to her has to be in her mouth so she is pretty easy to feed. 

I am pretty sure Sibyl is left-handed. They say that you aren't supposed to know until they're older, but she goes for everything with her left hand... it just seems obvious to me. Some of her favorite things are: blowing raspberries, whacking toys on different surfaces to hear the sounds they make, putting everything in her mouth, and being sung to. Iris sings this song to her, thanks to Bubble Guppies. 

Evan has started his new job and his level of stress has plummeted, partially because he works from home primarily, but mostly because he no longer is working on nights and weekends. He has read maybe 3 books (for pleasure) since he started about four weeks ago. Two of those are: Cloud Atlas by David Mitchell and The Sleep Revolution: Transforming Your Life, One Night at a Time by Arianna Huffington. 

For my part, I've submitted a first final draft of my dissertation to my advisor. I have lots of work to do still, but I plan to defend my dissertation before October so I can graduate in December. Once I'm done with it, I've decided to take up a couple hobbies: crocheting and photography. 

six months old

sisters

new school

The girls started at a new daycare/preschool a week ago and both have been adapting well to the new routine. They've possibly been adapting to it better than I have been. I'm a bit of a stress case in the mornings because I somehow decided that going back to work full-time (up from 2/3 time) was a good idea. The only thing that keeps my head screwed on straight is a daily checklist of everything that has to get done before we leave.

Our wedding anniversary was also last week - four years wedded and most of them have been sleepless. We went on a date to the botanic gardens in Denver and then stopped by Home Depot to buy a small air conditioner for Iris's room. Our house has no air conditioning and we are boiling by the time nighttime rolls around. We do have an attic fan but it doesn't always do the trick, especially in Iris's room, which seems to be the hottest of the bedrooms.

As we were checking out at Home Depot, Evan had to intervene with a very disgruntled customer who was cursing at the young checkout clerk. The guy seemed to think that the computer was doing the math wrong and having an entirely overblown response. She thanked us when the guy had finally gone to some other place to air his grievance. As we left I mentioned that I wanted us to get in our car before the guy came out to see which car we got in. Ugh.

With Iris starting at her new school we knew we'd run into new germs. She came down with a fever last night and clearly seems to have a case of hand, foot, and mouth disease, which was caught by one of her classmates. So far, not the end of the world. She has discovered popsicles since her mouth hurts and I'm happy to let her have as many as she can handle.

Unfortunately, the illness comes at the same time as Evan begins his transition to a new job. This week was supposed to be time for recuperation for him and instead we've all been in the house making it less peaceful. Also, Iris was supposed to get her MRI (the one we've rescheduled 4 times or so) and so we're having to push it back another month. Because she has to be put under general anesthesia she has to have been illness-free for 3 full weeks. That is hard to come by at this age, though I should have pushed harder to get the MRI scheduled before they started at their new school.

Sibyl is doing well. She has started doing the happy baby pose, which is something Iris never really did. She clearly loves to smile and laugh and wiggle and blow raspberries. Since their new school is on the university campus where I work I can walk over to check in on them any time and even stop in to nurse Sibyl if I want to.

Even so, it's still really hard to leave them for big chunks of the day. 

5 months old

home!

When I left Iris on Friday she had just come off of heated high flow and was on 2 liters of oxygen. I was thinking we'd get out maybe on Sunday, at the earliest.

So imagine my surprise on Saturday morning when Evan informed me that Iris had been on 0.5 liters for several hours and that we would surely go home on Saturday. I was skeptical because Evan had said something similar days before when Iris was still very sick. I think his exhaustion correlates closely with these predictions.

Evan's mom came in to town Friday evening and she corroborated Evan's story that some nurse or resident - someone with apparent authority - had come in to the room to say that we would be going home. I still didn't believe it until they had rounds and I got to hear it from the source.

So we were home before noon, which I still don't totally believe. Iris is still on oxygen full-time and she will come off it slowly.

For now, we can start recalibrating to regular life at home and enjoy all being in the same house once again.

I'm as exhausted as I look.

Super excited to see Baby Sibyl.

Relaxing together

one step forward, two steps back

I was feeling so optimistic yesterday morning when I arrived at the hospital and Iris had been on 1 liter of oxygen for several hours. The rest of the day went down hill from there. 

She had to get back on heated high flow oxygen at 7 liters at 60% oxygen for the rest of the day. When I arrived at the hospital this morning (Thursday), she had made it down to 7 liters and 40% oxygen.

She refused to nap yesterday so I was tearing my hair out by the time Evan arrived. She has tons of energy but it lasts in short bursts. Those short bursts are just enough for her to almost jump off the bed several times and generally cause total chaos.

The days have been running together and are filled mostly with coloring, eating mac and cheese, watching Daniel Tiger, and reading books. Stickers also play a prominent role. Today, we worked on writing thank you notes to the kids who came to her birthday party. That kept her occupied for a very long time and I think we'll do it again after nap time. When she can get out of bed to play she has been super happy with a shopping cart and fake food to give to her animals.

I don't see us getting home any time too soon. She has some massively thick mucus and still needs a lot of help to clear it. We have to be off heated high flow oxygen to go home... so who knows how long that process will take.

progress

Iris started yesterday on 4 liters of oxygen and by the late afternoon she was down to 2 liters consistently. Evan texted me this morning saying that she had been on 1 liters for hours. We are waiting for rounds to figure out if we'll go home today.

It's probably obvious that we want to get home as quickly as possible. Evan has not slept soundly over night since we arrived here last Tuesday evening and it feels awful to have the house void of Iris's chatter and chaos when I come home at night.

Early morning play time

Sibyl misses her big sister

hospital update

We've been in the hospital since Tuesday evening and were transferred to the ICU on Saturday. Iris has RSV with pneumonia. The pneumonia spread from her right lung to her left lung, which was why we had to go to the ICU. 

We've managed to get Sibyl care covered so that I can be with Iris at the hospital during the day and Evan sleeps at the hospital at night. We are pretty sure that we've also developed RSV. I have had a low grade fever the last two nights, and I can only assume Evan has the same considering the sleepless nights spent in the room with Iris. I've been very worried that Sibyl is also going to get sick since she's so young,  but she hasn't shown any signs of illness so far, aside from some snotty nose in the morning. 

As far as medications go, we started her on amoxicillin for the pneumonia but it wasn't working so we switched her to an antibiotic called unasyn, which seems to have had the intended effect. We also started giving her atrovent and pulmozyme to help break up the mucus in her lungs. 

When I got to the hospital this morning Evan said she had requested mac and cheese for breakfast. She also requested mac and cheese for dinner. We got her two orders of mac and cheese for dinner and she ate almost both of them. 

Mac & cheese!

She spent several hours on regular "wall oxygen" rather than on the CPAP machine today and was starting to jump on the bed. She also tried climbing off the bed one or two times. She is definitely feeling better.

CPAP mask = no fun, lots of TV

During the afternoon trial on "wall oxygen" she was at 4 LPM. They usually are willing to send us home when she gets down to 1 LPM of oxygen. (For reference, she usually sleeps with 1/4 LPM of oxygen and doesn't need any oxygen at all while awake). 

Managing a hospital stay as parents of two children has proven to be quite a feat but we've had an outpouring of support from all over the place, all of which we really, really appreciate.  

par for the course

We had our first family trip to the ER on Sunday. Iris has been complaining of intermittent belly pain (always located in the center of the belly or sometimes on the upper right side) for around a month, possibly longer. On Sunday, she vomited three times in the morning, had loose stools and a fever. Maybe it was a stomach bug, but what would explain the intermittent belly pain going on for so long? I've run out of ways to explain it away.

At the ER we started with the least invasive tests. Pushing on her belly in various places showed that nothing was tender to the touch, making the doctors think the appendix was not the issue. We then moved to an x-ray of her belly, which showed a lot of gas and backed up stool. She was a little scared about the pictures but by the last one she said "cheese" and was watching "Daniel Tiger" the whole time (which, by the way, is a great show that teaches kids so much about emotional regulation, adapting to new situations - like new siblings - and teaches parents how to be calm and to diffuse temper tantrums). Then we did an ultrasound to look at her gallbladder and gallstone. Her gallstone doesn't appear to be bigger than when we first discovered it (maybe about a year ago?) and her gallbladder didn't appear to be inflamed or show any backup.

I keep thinking it has to be her gallstone that is causing her pain, or just the gallbladder. It seems like most of the other people with her condition have gallbladder problems, but only a couple of them have had it removed. It's also possible that she has urinary reflux. I'm not sure how that is diagnosed but we know she doesn't have a UTI. (I got her to pee in a cup, which I consider a minor miracle, even though she then resisted going potty for the rest of the time we were at the ER because she was afraid she would have to pee in a cup again and she didn't want to do that.)

Finally we agreed to do some blood work even though I had told Iris we wouldn't do any shots (which remains true - technically, we didn't do shots). This was truly traumatic for her. I hated to have to hold her while they poked her for the blood. Thankfully the medical team called the best nurse they had to do the draw and she got it on the first poke. Previous experience has shown us that it's very difficult to get into Iris's veins.

The blood work all came back normal: no problems with liver function, no elevated white blood cell count. I'm not sure what else they tested, but they said everything looked normal. We gave her Tylenol for her fever and finally went home.

We spent around 12 hours in the ER - from 3pm to 3am. Sibyl was with us and did a good job of being quiet, though both Evan and I wanted to have all our attention on Iris while we were there.

I thought a lot about this reality that we've brought Sibyl into while I was pregnant and while considering whether we'd have a second child. I wish our reality were different, that our baseline didn't involve regular interaction with a battery of medical specialists and that we didn't have more knowledge about Iris's medical condition than most doctors we come into contact with. But spending time wishing for things to be different doesn't help anything, really. It certainly doesn't help us to cope.

Next time I'll plan not to bring Sibyl with us to the ER. I can hardly believe I decided to do it this time. She was barely 10 weeks old and surrounded by germs. I asked one of the nurses about whether they had seen mumps there recently (Denver is having an outbreak). She said they hadn't seen it much. Maybe she was just saying that to make me feel better about bringing  a healthy newborn to the ER. Mom-guilt is the best.

Iris was supposed to have an MRI today (Tuesday), but we've had to reschedule it now three times I think because Iris has been sick. The first time was because she had vomited the previous night and I didn't want her to be dehydrated going into the procedure. The second time was because she had had a fever a few days prior, same with this time. You are supposed to have at least 3 weeks of being healthy (no fever/inflammation). So we're now going to try for April. I'll probably leave Sibyl at home or have someone come with us who can watch Sibyl while we attend to Iris. 

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. 

baby sibyl

Baby Sibyl finally arrived (10 days late)! Evan and I both had arranged for parental leave assuming she would arrive on her due date at the latest. In absence of a baby to take care of, Evan began nesting, taking the form of arranging our books on our bookshelves. We didn't have quite enough shelf space so this job has remained 75% done while Evan made new shelves. 

The result of Evan's nesting

The days after her due date were full of my trying to get labor started. I tried acupuncture, massage, lots of walking... everything. Finally, though, it came down to an induction. I wasn't thrilled to have a scheduled induction but it ended up being a very easy labor (in comparison to Iris's) in large part due to the epidural I had. 

By all accounts, Sibyl is a pretty easy baby. She spits up A LOT but otherwise just sleeps at this point. 

Three weeks old

Iris's teacher at school made her a poster to celebrate being a big sister and hung it outside the classroom door. Iris has been very excited about being a big sister and wants to hold Baby Sibyl all the time and help change her diapers.

Iris is a big sister!

"Can I hold Baby Sibyl?"

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.  

christmas

Two little Christmas trees - I'm resisting getting a really big one. 

Christmas was quiet this year. My mom is here to help with the new baby (whenever she arrives) so it was just the four of us. This was the first year Iris really understood anything about Christmas (by which I mean, that there are presents to be opened).

Iris came to church with us on Christmas Eve and really loved watching the musical performances and she got to hold the candle for "Silent Night."

We opened presents the next morning. She got really excited about the first gift she opened (some clothes) and was totally overstimulated by that for a little while. She then settled down and continued to open her other presents.

Probably my favorite memory of Christmas this year is the sing-along that Evan and Iris had on Christmas Eve. We have a little video of it.