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.

patience

Patience is not my strong suit.

Baby number #2 is due tomorrow, January 2, and I am frustrated that she hasn't made her debut yet. I was convinced that we'd have an early arrival, but no dice. I'm also still totally freaked out at the prospect of having two children and I have no idea how we are going to make it work.

In the last few days Iris has started shouting at my belly, "Baby, come out! I want to play with you!" She has also been helping my mom rub my feet, which is especially cute.

Thanks to my mom's free babysitting, Evan and I have seen more movies at the movie theatre in the past few weeks than we have in the past two years. Three. It's possible we will get a fourth in before the baby comes. I'm also doing my best to cherish the little cuddle moments I get with Iris that will certainly change once the baby arrives.

Basically, though, I'm not sure how to be patient as I grow increasingly uncomfortable and wish to sleep on my stomach again. For now, I'll go drink some raspberry leaf tea and work on finishing our Christmas cards...