end of summer

Hiking at Lair o' the Bear

The end of summer surprised me this week.

Iris's daycare had it's official "back to school" night - our first ever. She goes to a Jewish preschool that is on my way to work. I haven't mentioned it much, but she's been attending 2 and then 3 days a week since April, though with several short breaks over the summer -- some voluntarily (vacations to California and New Mexico) and some not (recall hospital stay).

Iris is possibly the most social and outgoing toddler I've ever met. She loves kids, especially. Even with all that, she still doesn't like going to school in the mornings. She always says, "No kids. No school," while we drive there. But she very rarely cries when I leaave and instead goes off and plays either by herself or with another little child. I think she has two difficulties that contribute to her anxiety at school. One, not everyone understands her; and two, she does not follow directions well. I very frequently have to count to three before she obeys me or I have to tell her what the consequence of her disobeyance will be ("I'll take away your blue blanket...").

Part of the surprise at the end of summer comes because we've been so busy right up until the end. We have welcomed Evan's best friend and his family to stay with us in our house for a while, which has been great fun for us all. Iris loves the three new kids we have roaming around our house. We don't have a huge house so it is admittedly a tight fit, but Evan is right when he says that it wouldn't be as easy with any other family.

We also had a vacation to California for Evan's parents' 40th wedding anniversary (wow). Iris got her first taste of ocean (literally) and spent hours running through the house screaming with her cousins.

Playing in the California sand

And, lastly, the excitement of getting ready for school has been supplanted by preparing for a new baby sister, coming in January. I keep forgetting that I'm pregnant, though recently it's been harder to forget. Iris, on the other hand, announces it to people frequently: "I have a new baby sister!" and "I'm a big sister!"

New baby sister

new mexico in july

We went home to New Mexico for the 4th of July. Iris is still on oxygen after this most recent respiratory infection, so we rented a concentrator and flew down to Santa Fe. Had the batteries for the concentrator worked predictably, the flight out of Denver would have been very low stress... or at least medium stress. Unfortunately, we discovered that one of the batteries wasn't working while we were at the airport and that pushed Evan and me into disaster management. We don't handle disasters in the same way, which contributes to the stress. We were finally able to arrange for last minute oxygen service while in Los Alamos and were still able to make the flight without medical emergency. Phew.

The flight itself was easy. Iris loved flying in the airplane and napped on Daddy's lap as I daydreamed and looked out the window. We flew over the Great Sand Dunes and I was struck with regret that Evan and I haven't done more hiking since we've been in Colorado. Not that our lives have really offered that opportunity lately. 

Once we got to Granddad's house, Iris immediately wanted to play with Granddad. Her favorite things to do at Granddad's house are to play with water and to play the piano. We somehow haven't managed to get to a swimming pool this summer in Denver, but we did make a quick pre-rain trip to the neighborhood swimming pool in Los Alamos. Iris gets cold very quickly in the water, but she loved having Daddy throw her in the air. 

A sprinkler and a bucket

Singing, "The Wheels on the Bus," and "Mary Had a Little Lamb."

A new favorite activity

Iris tolerated the oxygen cord well while we were on our trip. She actually doesn't like to take it off sometimes, which seems weird to me. We are doing twice daily Flovent treatments, which she barely tolerates though she likes them better when she can pass the mask around to everyone to make sure we all get our treatments. "Oh! I forgot! It's your turn!" she hollers.

Flovent treatment, twice a day

We got to hang out with my brother a fair amount, too, which is always valuable.  

Uncle Mike & Iris discover a pen with a light on it

Feeding the ducks at Ashley Pond

Incredibly, I didn't get any good photos of Iris and Granddad, but here's one of them as we go into the Santa Fe airport on our way home.

Photo with Granddad

The trip did feel like a vacation, in spite of the massive load of stuff we had to pack with us. Traveling with a toddler is much more complicated than traveling solo, and I think we're getting pretty good at it. I still haven't created a packing checklist, which my dad always suggests as a good way to prepare for any trip. Or maybe I have and I forgot about it... In any case, we're headed out to California next for Evan's parents' 40th wedding anniversary. We're very excited and Iris won't have to be on oxygen at sea level. Hooray. 

mother's day road trip

We decided to take a road trip over Mother's Day weekend to Farmington, NM, to meet my mom and brother for a reunion at the school where she used to teach. The trip was exhausting for us, and I'm not sure we would have chosen to make the trip, except that it was Mother's Day weekend.

I had forgotten how huge the US is, having not undertaken a road trip recently. The land is tremendous and all the larger when there is a two-year-old in the car with you. After trying various arrangements, we discovered that it was most successful for me to ride in back with Iris and let Evan do all the driving. I also admit to letting Iris play on her computer for far too long.

Trying to stave off boredom in the car

I'm glad we had the excuse to travel this way through Colorado and New Mexico, though, because I can't imagine when else we would have decided to make a trip in this direction. Having a child with special medical needs has really cramped our traveling style. We brought her oxygen concentrator with us and she had to wear oxygen over the really high passes. Luckily, she didn't need it during the day anywhere we went. Or, perhaps better said, none of us could tolerate the idea of her being leashed with her oxygen cord for just the whiff she would need.

In any case, I can't adequately describe how incredible the land is. We drove through the most incredible mountain scenes over and over again and then found our way to the New Mexico plains. All breathtaking.

We had snow on the drive back north. 

Mesas by Farmington

For all the road trips I've taken, I don't think I've ever felt anxiety about being out in the middle of nowhere. I had a strange sensation of worry about what would happen if we had some medical emergency.

We met Mom and Mike in Farmington, and Iris got a chance to ride on Uncle Mike's skateboard, which was probably the highlight of the trip for her.

Sally remembers 1968

Moms and kids

By the end of the weekend we were exhausted and ready to be home. We also decided to wait to attempt another road trip for a while. The good news is that we think Iris doesn't need oxygen on planes anymore, so we can fly relatively easily. 

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.

steamboat springs

Last weekend we took a one-night vacation to Steamboat Springs. My Aunt Nancy had been painting (she is an artist) there for a week and we wanted to be sure to visit while she was in Colorado. It is a four hour drive for people with babies, so most of the weekend was spent in the car. Iris did really well on the trip and it was her first car ride facing forward.

Facing forward for the first time

Riding in the car is a great way for Iris to see her city, especially the cars, which she calls, "gaga." This is also the name she uses for dogs.

We all need our sunglasses on

Iris usually dislikes having her sunglasses put on while we're in the car, so I often show her that everyone else has to have them on, too. I think this helps. At least for a little while.

We had to take the concentrator with us but failed to bring both portable oxygen tanks and since she was on a higher oxygen flow at higher elevation, that means we weren't able to do as much as we might have on Sunday because we had to be sure we were driving home with a full oxygen tank. This was a major planning fail. 

Concentrator packed

 Shortly before this photo below was taken, we hopped in the car and took off. Then I realized I had forgotten my cell phone and we had to turn around before getting going for real.

 We managed to keep Iris out of trouble while visiting the graphics studio where Aunt Nancy was painting. (All of the above photos were taken by my dad.)

Visit with Aunt Nancy

Looking at Iris's toes

In case you're wondering, I forgot Father's Day. Technically, I didn't forget it, but I thought it was on Monday since I couldn't imagine figuring out how to celebrate while we were on a trip. I think Evan might have forgotten too, but when we saw the print shop owner on Sunday morning, the first thing she said was, "Happy Father's Day!" And this was while Evan was making eggs for all of us. Ugh. Second major fail of the trip.

I tried to make up for it by bringing home a bag of cookies from Whole Foods and some meditation magazines. So after Iris was asleep we drank peppermint tea, ate cookies, and read meditation magazines.

Daddy-Daughter Staycation

Evan here. I’m writing this during our first daddy-daughter staycation. When I texted this event to a friend, my phone autocorrected the last word to “starvation.” Funny, but also a helpful reminder of my priorities.

We were to go on a nice family vacation to State College, PA. Sarah was to defend her proposal Friday morning, and then we were to vacate with old friends until Monday, when we were to fly back to Denver. We made plans with friends and were excited to see them and to introduce them to the new and improved Iris. But Iris made other plans. Terrible, painful gas and constipation started on Tuesday, thanks probably to the remission of a stomach virus, some dietary changes we’d made in response, and possibly also the end of her steroid burst. Her pain and discomfort continued until Sarah left for the airport Thursday afternoon, alone, after we had decided that she (and we) couldn’t fly in this condition. I’m exaggerating a bit – mild discomfort continued until she labored through a sizeable blockage late Thursday night.

I’m happy to report that no one’s starving and that we’re having a great time. We went for a bike ride this morning, and we played in the backyard this afternoon.

About the decision to cancel the trip, some thoughts:

On Wednesday night I mentioned the unthinkable possibility that I might need to stay with Iris while Sarah made the trip alone. Sarah was incredulous and considered it impossible on two fronts:

1. That the stars could misalign so perfectly as to keep her away from Iris for such a long time.
2. That someone other than Sarah would act as Iris’ primary caregiver for such a long time.

These were existential worries, catastrophized rather than calmly reasoned. As Thursday morning progressed, our discussion of this possibility became more serious, and I set to work convincing Sarah and myself that it would work. “It will be great! Daddy-daughter weekend!”

When unforeseen forces force big plans to change (including vacations), sometimes I like to exaggerate the arguments in favor of change. This is a coping mechanism intended to make life easier. (Full disclosure: sometimes in these situations I exaggerate the arguments in favor of not changing – which makes life harder. Sarah is probably laughing at me now in her loving way, thinking that I exaggerate everything.) In this scenario I exaggerated how great it would be mostly because I needed convincing. No doubt I was nervous, and for a few reasons.

First, having not had full care of Iris for such a long period, I was simply a little wary of the increased responsibility. Till now, whenever I’m ostensibly caring for Iris, Sarah offers guidance before I’m even aware that guidance is needed.

Second, and more worrying: were we making the right decision? Were a few hours of discomfort on a plane and in the airport system enough to cancel a family vacation? By about 11am – an hour before needing to leave for the airport – it was clear that she was on the mend gastrointestinally, but the blogosphere’s fear-mongering made us worry about an “obstruction” more than was probably necessary. And WWTMIPWLTBD? (What Would The Mythical Ideal Parents We’d Like To Be Do?) We both admire adventurous spirits, but in terms of family activities we do so mostly from afar. It seems likely that these parents would have jumped on the plane and dealt with it. Were we being dull and boring? 

Had we jumped on the plan, the outcome for us might have been better – since we’d be celebrating Sarah’s new ABD status and Iris’ regularity as a family – but then both Iris and I wouldn’t be able to experience quite so viscerally the importance of everything that Sarah does. Iris’ favorite word since Sarah left is “mama.” She utters it constantly.

Two final notes:

During Iris’ second nap today she ripped off her canula. Before putting it back on I decided to test her saturation levels, just to see. The readings were between 95 and 97 – way too high to be accurate. But they stayed there for a few minutes, so I decided to suspend disbelief and let her spend some time cordless. The last time her sats were this high off O2 we were at sea level – but we were also on vacation. Who knows, maybe my presence during the day is all she needs. In any case, after her nap we went outside and played in the dirt. See pictures below. I tested her again when we came in and got a reading of 91. This is a more reasonable reading and means she responded well to the prednisolone. Good news.

Sometimes Sarah’s blog posts contain things that Sarah hasn’t had a chance to tell me yet, especially when I read them at work. I find that very pleasing. Some of this current post will be new to Sarah, and I’m glad to return the favor.

Iris in her new big hat. See how it darkens her face.

Iris plowing the fields and earning her keep.

Iris wondering when I'm going to start helping out around here.

texas trip

Evan's friend from high school was getting married in Austin. We packed up almost all of our earthly possessions and took a direct flight to Austin for a five-day vacation. We had to rent a portable oxygen concentrator for Iris so that she could fly. They don't allow oxygen tanks on airplanes.

Iris in sling, toting oxygen concentrator behind

Once we got to Texas we found that her oxygen saturation levels were super high since we were down at sea level. So we left her off oxygen for the duration of the trip. We both started wondering to ourselves whether we might have to move to sea level if Iris's lungs don't improve. We've both been disappointed that she's still on oxygen and I had been sure she'd be off by December. Maybe I've mentioned that. 

So we got spoiled in Texas letting Iris run around without a cord. 

Evan's parents drove in from Houston to babysit Iris for us while we went to the wedding. They had tons of fun reading books together.

The five of us went out to the Ladybird Johnson Wildflower Center one day. It was really beautiful even though there were not many wildflowers to speak of. We did end up seeing some wildflowers on our drive to Houston later during the vacation.

Evan, Iris, and her bunny at the wildflower center

The wedding events themselves were a lot of fun, and for those interested I may cover them in more detail in a separate post. 

Here we are at the wedding

Iris did very well during all the driving. There was a bit of fussing, some of which I captured below.

Iris is mad

The vacation was sorely needed. In addition to reconnecting with some high school friends, Evan managed to work very little and truly take a break. Iris is on the cusp of becoming a walker. She is taking increasingly confident steps and has sprouted another tooth. On the top this time. 

she can take care of herself

We took off south for New Mexico this morning at 4:40am. Our car was packed to the gills and our sleeping baby seemed eager for the adventure. Evan had gotten all of two or three hours of sleep, as is his pre-travel custom. I hadn't done much better since Iris was up a bit for feeding.

By about 7:45 am Iris -- who still does not know how to take a bottle -- was awake and obviously ready to eat again. We stopped somewhere along the way so I could attempt to feed her in the back seat. She had been sucking her thumb and nuzzling up to her blanket. And she hadn't eaten in over three hours, so I was anxious to feed her. We stopped so I could try to nurse in the back seat and we had a terrible time getting situated so she just couldn't get comfortable. Then she decided she wanted to pull the shiny door handle and the shiny metal post holding up the head rest. Ugh. So we continued on our way.

A little while later she was sucking her thumb again and very nearly asleep. This is typically when I have the best luck at feeding her -- when she is nearly asleep. So we pulled over again and went through the whole thing again...can't get comfortable, ooh, there's some shiny things...etc.

Back on the road again I gave her some oatmeal to tide her over.

It's possible we pulled over two or three more times. I don't remember. I got very upset that she wouldn't nurse. It used to be very easy to nurse her in the back seat of the car but she has gotten so much bigger that it was just tight and uncomfortable for both of us.

I started crying and felt sure she would starve before we made it to Los Alamos. I worry so much -- and obviously too much -- about whether she is getting enough to eat (she remains steady on her growth curve). Iris has not seen me cry very often so she was a bit mystified at what was going on and Evan kept driving while reaching around behind the driver's seat to put his hand on my leg. "It's okay, Sarah, she'll be fine," he said. "She can take care of herself."

I was thinking, "Evan she's not even 9 months old, she can't take care of herself." But, realistically, she was not going to starve and was not even close to it. She was hungry and she needed her mom to be a little more creative with figuring out how to feed her and keep all the interesting shiny things out of sight.

Finally around 9:30 we pulled over again and I got into the front seat with her. She nursed for a very short time, but long enough to keep us moving. After that Evan sat in back with her and fed her sweet potatoes. Then both of them fell asleep in the backseat and we finally made it to Dad's house eight hours later.

 This was Iris's first big road trip. She did very well and her mom cried more than she did. It was definitely a tiring day and we were happy to get a nap when we arrived. And I did learn a thing or two from the experience: Iris will eat when she is hungry, Iris doesn't fit in the back seat for nursing anymore, and it's probably best to plan to take a good, long break (and maybe several) when traveling with children.

vacation

I spent most of Friday getting ready for our trip to New Mexico. I know that all babies require a lot of gear but this baby's extra gear is a real pain to procure. I had an intention to be very calm and mellow for the whole day but the time spent frantically trying to get Iris her Digoxin refill after the pharmacy botched the refill order shot me right out of any serenity. I spent a good hour or so grumbling to myself about the whole thing. It's amazing to me how many times things would have gone wrong had Evan or I not spoken up.

The good news, however, is that I got the medicine, we have extra pulse ox probes to measure her oxygen levels, we're taking the oxygen concentrator with us, and she got her Synagis shot in the afternoon (a few days early). So she's ready to go...medically speaking. She may not be ready for the six-hour drive, but we're leaving super early so as to maximize sleeping time.

I'm always very happy to go home to Los Alamos, especially for Christmas. Evan is also looking forward to the break. Here is a photo of him packing. And he just said, "I'm really excited to go to New Mexico."