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?"