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. 

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.

pacific northwest trip

At the end of June we took a trip to Washington to see Evan's cousin get married and to Oregon to visit some friends with a new baby. Iris had lots of fun meeting the extended family and was off of oxygen the entire time we were at sea level. Evan and I did a poor job of chronicling the trip in photographs, but we did manage to take some video clips. See below.

 

 

Iris got to meet her great-grandmother and great-grandfather for the first time, which was a special treat. (For some reason Blogger is not letting me post the four-generation photo, so I will try to post it later.)

Traveling with Iris is exhausting, there's no denying it. She has tons of gear. She also didn't sleep well in a foreign crib so we all ended up sleep deprived. She was very happy and energetic, otherwise. Evan is responsible for hauling our big suitcases and the car seat when we travel and he still manages to outpace me as we walk through the airport.

fourteen months old

She's getting so big!

This is the face she makes when I say, "Smile for Mama!"

Now she's giving me her bunny

christmas 2013

A big milestone has been met: the first Christmas. It's true that holidays are way more fun with children around -- even when they don't understand a thing about what is going on.

Iris loved staring at the lights of the Christmas tree but spent most of her time working on pulling herself up, standing on her own, and banging on the piano. She would occasionally pause while banging to make sure that we were watching her.

She also really loved spending time with her Uncle Miguel. We were having dinner one night and she wouldn't stop staring at him. It helped that he kept making silly faces at her.

Iris and Uncle Miguel, #1

Iris & Uncle Miguel, #2

We managed to spend some time outdoors even though we didn't bring any snow gear. Evan and Mike went hiking one day down in White Rock Canyon and then the three of us went out for another little walk the next day.

A common Northern New Mexico scene

 Christmas morning started at the very civilized hour of 9:30am. Really, Evan and I did not get that much sleep while we were there because it was an unfamiliar sleeping area for Iris. But I imagine that our future Christmases will involve even earlier mornings.

Iris couldn't help open presents yet, so mostly she just watched people open things and hand them to her. She tried to help, but that coordination is still lacking.

A pile of gifts to open

Iris got me a very special Christmas present this year: she suddenly became a great eater. Well, at least a better eater. Apparently cardiac babies are not great eaters. Previously, we all had an impossible time getting her to take more than two bites of any type of food. It was funny to watch how quickly she could close her mouth when she didn't want what was being offered. But now, suddenly, she keeps her mouth gaping open for more food. 

Peas and brown rice, yum.

gratitude

Dara and Iris before Thanksgiving dinner

I intended to spend more of today in a state of gratitude. I started off fairly well -- feeling thankful for the hot water in my shower as it got progressively cooler the longer I stood there. The day got away from me with hours spent with friends and, well, when you're in the moment it is sometimes hard to remember to be thankful. We spent a couple hours with Jesse & Amanda (and baby Owen) at their house in the morning. And then in the afternoon went to Jill's parents' house for the big meal. They are Jewish so we also got to do the lighting of the candles with them. Jill's parents got Iris a Hanukkah gift: blocks. I had been thinking that she doesn't have enough blocks and balls around so I was glad for this gift.

So now at the close of the day I'll spend some time feeling and expressing gratitude. I have been thinking a lot about how we can teach Iris to be thankful. This is a difficult concept to grasp -- even for adults. I suppose it's a habit or a state of being that can just as easily be adopted as it can be forgotten. I happened to read this article about how to raise thankful kids today and was reminded, yet again, of how difficult this whole parenting thing is. Parenting requires you to be the best version of yourself you can be, or at least requires you to attempt to be the best person you can be. And you have constant reminders when you have failed to be that best person.

In the past, Evan and I have been known to wonder aloud whether we are "thankful enough," as if there is an appropriate level to be achieved. That misses the point, of course, because being thankful is all about the feeling of gratitude in the moment. There is never "enough" because there are infinite moments in which one might feel thankful. It can't be a constant state of gratitude, of course, but even taking a few minutes each day to let oneself feel deeply thankful would be a great improvement to the well-being of most people.

I am thankful for pediatric cardiologists. I am thankful for pediatric ophthalmologists. I am thankful for oxygen concentrators. I am thankful for sunglasses. I am thankful for technological advances. I am thankful for my husband. I am thankful for my daughter. I am thankful for my parents, my brother, my extended family and for Evan's family. I am thankful for our house and for all the work Evan has put into it. I am thankful that we live right across the street from a gym. I am thankful that we will be able to afford daycare starting in March (if just barely). I am thankful that Iris got the RSV vaccine and the flu vaccine. I am thankful for getting closer to sleeping through the night. I am thankful for my book club. I am thankful for my Penn State friends and colleagues. I am thankful for friends. I am thankful to live in such a beautiful state. I am thankful for our meditation cushions. I am thankful that the worst seems to be behind us.  I am thankful for morning naps.

Iris and Evan having a morning nap

early thanksgiving

Evan's family came in to town last weekend for an early Thanksgiving. We managed to keep Teresa and Montie from doing much work on the house. I enjoyed having the house so full -- we had Garrett in the guest room, Katherine and Jeremy's kids in the living room and Katherine and Jeremy upstairs in the meditation room. Montie & Teresa stayed at a hotel nearby.

Nonna Teresa with her three grandkids

Iris had tons of people to play with and things to watch. She loved meeting her cousins and aunt and uncles.

David, Iris, and Emma reading books

David, Iris, and Emma

It did take her a while to warm up to Garrett. His big beard really terrified her but after a day or two she was having fun with him -- especially when he sang to her. It was fun to see Garrett with a baby, it's a more tender side of him I don't often see. He was very good at trying to calm her down and keep her happy.

Iris, Uncle Garrett and Iris's favorite toy -- the star

On Saturday, we took the whole gang up to Mt. Falcon park, which is the closest mountain area to our house. Sunday was our Thanksgiving meal, Monday we went to a local playground and then to the Museum of Nature & Science.

The girls -- Sarah, Teresa, Iris, Katherine, Emma

The boys - Montie, Garrett, Jeremy, Evan, David

On Tuesday everyone had taken off except for Garrett. We took him to the Colorado History museum (a bit of a disappointment) and then for lunch at City O' City. Evan suggested that we take him there because it was close to the museum. We forgot that it was a vegetarian restaurant. Taking Garrett to a vegetarian restaurant is like taking him to church. He suffered through it. Luckily, we went to Root Down for dinner, which was a smashing success. We also dropped in to the Wynkoop Brewing Company, which was started by John Hickenlooper, Colorado's current governor and Denver's former mayor.

We had Iris with us all day on Tuesday, meaning she was out of the house for 7 hours. She did really well although getting her to breastfeed in the car was a bit of a hassle. She has been extending the time between nursing sessions and it has been making me nervous. I don't like her going 4 hours without nursing. I weighed Iris earlier this week -- she is 15lbs 7oz. She still hasn't doubled her birth weight, but is keeping on her 25th percentile growth curve.

Garrett asked me whether motherhood was all I had hoped and dreamed it would be. I had a hard time answering that question because I don't remember what I had thought it would be, except that I thought it would be way easier. From what I can recollect of what I thought motherhood would be, it is way better than expected. Even with all the things that we've had to deal with, everything that Iris does is that much more special considering the immense challenges we've had to go through. I'll always worry that I'm not doing enough or that I'm doing something wrong, and it seems very likely that she'll end up just fine. I am not sure what Evan would say about fatherhood and whether is has been what he expected. He adores Iris and loves to make her laugh. I can say for certain that even before all of Iris's medical issues were discovered, Evan decided he wanted never to have a newborn baby in the house again -- too much sleep deprivation. I am hopeful that Iris and I will be able to change his mind in the coming years.

Katherine asked us about what we wanted to steer Iris towards/away. There are many things we want to steer her toward and away from but one of the more important ideas for me is that she should have an understanding of how she can influence the world around her. I want her to volunteer and see how she might be a positive force in society. She'll likely grow up not eating much meat -- neither of us will prepare it for her at home, anyway. We want to teach her to meditate, do yoga -- things that I actually have to start doing again. I suppose my overarching goal for her is to learn what it means to be healthy and to live healthfully and then to do it.

visitors & the gift of time

We have enjoyed having some visitors recently. Two weekends ago my friend Susan brought her two boys for a little visit. Gabriel & Iris made friends quickly.

Gabriel and Iris taking a photo break.

This past weekend Evan's parents came out to help work on the house. They stayed very busy -- as is the custom of their people -- doing several days' worth of work on each day.

Teresa cutting trim and baseboard.

The good news for them is that I think they've had more time to play with Iris this time than last time they visited.

Montie & Iris

Iris learning how to fly

We took Teresa & Montie to the Denver Botanic Gardens on Sunday afternoon. Teresa has a deep love of flora and so this visit was more educational than previous visits. The weather was completely gorgeous for their entire visit but we are likely to have snow again soon.

Morgans at the Denver Botanic Gardens

We have even more visits in store. My dad arrives today for a short visit to see Iris and to give me some time to work on my dissertation proposal. The Morgans will return for an early Thanksgiving in a couple weeks and then my mom is coming for the month of December so I can work on my dissertation proposal. 

It has been fun to have all these visitors around. Iris loves being with people and is very happy to have more playmates. 

It is a great gift to have our family members give us their time, particularly since it is the thing that Evan and I most sorely lack -- free time for self-care or for relationship maintenance or sleep. We couldn't have survived without all those gifts of time. I suggested to Evan that we not buy each other Christmas gifts this year since the work on the house has been eating up most of our extra money. Really, we need free time to spend together more than anything else. Perhaps we'll just have a "perishable gifts only" rule. We don't need more dust-collecting stuff, but we could do with a box of oranges, for example.

family outing

Despite having the first snow of the year on Friday, the weather was nice enough on Saturday for us to take a trip to the Denver Botanic Gardens. 

Iris got practice walking and standing.

Iris and the water.

Iris and the water.

 At the end of the trip we stopped for a family photo. We thought it looked nice at first and then we noticed how tired both Evan and I look...and Iris looks very menacing.

Trinity Place Child Care

In other news, she is down to 1/8L of oxygen in the daytime (but 1/4L at night). This makes me very happy. I also seem to have found a babysitter who can come during the days a couple times a week. Just having a few hours off to run errands -- or to do my dissertation proposal -- are a huge help. 

five months old

Iris was five months old yesterday. To celebrate, Colorado is having historic rainstorms and flash flooding.  She seems to have some red in her hair and sucks only her left thumb. She also doesn't make much noise in the morning when she wakes up so I don't always know that she's awake. But when we go in to see her she is all smiles. On Monday we go to the genetics department to arrange for further testing.

Iris at five months

I heard an NPR interview with the author of a new children's book, Wonder, which made me want to read the book straight away. And to have the future Iris read the book. It was inspired by the author's personal experience of not knowing how to help her son behave around another small child who had a facial deformation. I take it that the gist of the book is to emphasize the importance of kindness and that one of the main takeaways is: "When given the choice between being right, or being kind, choose kind." I probably don't think that this should be acted out all the time -- there are some times when being right is really, really important -- but too many people [maybe myself included?] think being right is always the most important thing no matter what.

**

A lot has happened recently. For one, we moved. The house is still in shambles but we're in a house! Soon we [Evan] will install the kitchen cabinets and by next Friday I hope that the contractor we hired will have the counter top finished. Evan is planning to install all the doors and the baseboard very soon, too. As soon as that is complete we can actually move the big furniture in and decide what to do with all the books. 

My dad, Nelson, and brother, Miguel, helped us move last weekend in intense heat. There is no way we could have done it without them. They worked very hard and even had time to do some tree trimming.

Miguel in a tree. Dad in background [little blue speck].

When Evan is not working on the house he is working at his job. He left yesterday for a business trip to Ann Arbor and from what he reports back, the trip is going very well. He returns tomorrow and has pledged not to work over the weekend. I have reserved Saturday morning for a family outing. We are going to attempt to take Iris out to breakfast in a cute neighborhood I used to frequent.

I said long ago that one of my goals was to run a 1/2 marathon in October. Well, I have sorely failed at preparing for that goal. I am running, which I'm happy about, but it's been difficult to carve out the time. And I still haven't started running with Iris in the running stroller, even tough that's what it's for. The idea of running with the oxygen tank makes me a little nervous though it shouldn't.

My main goal should be to actually do work on my dissertation. This has still not happened. We have a sitter starting tomorrow who has been hired explicitly to help me get work done on the dissertation. May I actually use that time for the said purpose.