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.