Blog-jacking

Hi all,

This is Evan, and I'm hijacking the blog for a few minutes to announce some great news.  Our daughter, Iris, whom you come to this blog to learn about, is now saying "Dadadada" with verve and gusto.  We're no Dadaists in this family, and therefore the process of elimination leaves us with only a single plausible conclusion: she's referring to me. I'm sure some dad hundreds of thousands of years ago decided to name himself this first alveolar utterance his child made, before the too-busy mother was able to do the same.  But now we get to lean on tradition, and I can gain some ground in the quest to become the favored parent.

Iris is so excited to celebrate her Daddy, that she's been making this utterance all day, even in my absence.  And we have multiple instances of video proof.

That last video came after a dinner during which she gritted her tooth and pounded her plastic giraffe into her booster seat tray like a young Dave Grohl. Grandad Nels egged her on with complicated syncopations, and Iris usually waited for her turn in the exchange, but always she returned to her frantic beat.  When I sat her in front of a piano earlier today, she did the same thing.

We are vacationing in Los Alamos now, and it snowed last night.  None of us came prepared with snow gear, so we won't be spending a lot of time outside the next few days...except that I'm going on a hike with Sarah's brother tomorrow afternoon.  He's quite the adventurer, so I'm expecting it will be great.

Other than that, my goals for the trip are to read a few quarters of Lapham's Quarterly, play with Iris until she gets tired of me, catch up on lost sleep, and do no job-work.

Happy holidays, everyone.

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."

fun with grandma

Iris is discovering new capabilities every day. She is just about to crawl but mostly loves to practice walking. She and my mom spend a lot of time together every day. You'd think I would be done with my dissertation proposal by now. Not so. I'm not sure how we'll manage once my mom goes home to North Dakota. I have a feeling I will spend a lot of time trying to savor the last few weeks before she starts day care.

Iris and tub on head

Iris on some boxes

Iris and her books

eight months old

Our little lady is eight months old, as of this past Wednesday. She is becoming even more energetic -- if that is even possible -- and she is nearly always in a good mood. I have not done many more trials off oxygen recently since it seems her saturation levels are not quite as good as they were before. I think she might have a little cold. 

We visited the pediatrician earlier in the week (or was it last week?) to talk about weight gain -- my perpetual worry. Basically, Iris is doing fine. I've said that before. But I have been worried about whether she's getting enough. She has such a hard time settling down and I find it extremely frustrating when I know it's been a while since she's nursed last and that she needs to just chill out for a bit. She does seem to be getting a bit heavier in the thigh section, and I've been trying to offer her food in her high chair several times a day. 

Mom and I visited a daycare today on the University of Denver campus. They do admission by lottery and only once a year. Even though we're starting her at a different daycare in March, I think I'd like for her to go to this one. Evan got a promotion at work -- he's proving very valuable to the company since he has some technical and quantitative skills. 

first tooth

While I was feeding Iris yesterday morning, I kept thinking I heard and felt some hard object in her mouth. She wouldn't let me look in her mouth so I spent the rest of the day not thinking about it. Then when Evan got home he said, "Does she have a tooth?" I forget what they were doing, but evidently it was something that involved her putting stuff in her mouth. So I felt around on her gums and -- eureka! -- found a tiny little tooth breaking through her gums.

With my mom in town I have been able to get some work done on my dissertation. I'm mostly working from home but am getting ready to venture out of the house. It took Iris a little while to warm up to Grandma, but they are good friends now. Iris is keeping Grandma very busy. They have been singing a lot and practicing walking and learning how to make new mouth sounds. Iris has been clicking her tongue a lot today.  She is also finally figuring out how to put both hands together, which is very cute.

I am starting to understand what it is to miss one's child. I am almost never without her and when I do leave her, it is usually just for a short time. It is very weird to suddenly have someone else around who can watch Iris while I do other stuff. This means that I have been doing minimal child rearing the last few days. Surely, this strange feeling will only become stronger once we start daycare...and every other growing up phase after that. Mainly I finally have enough time now to realize how quickly Iris is going up and have been able to start to savor these fleeting days. It is very difficult to gain perspective when you're right in the middle of it.

By the time Grandma goes back to North Dakota Iris will be an entirely different little girl. She might have multiple teeth and might be crawling. I can't imagine what else she will figure out how to do in the next few weeks.

winter

Iris has had some extended time off of oxygen recently. Over the weekend Susan and her family invited us to Downtown Littleton to see the tree lighting and Santa's arrival. This was Iris's first outing without an oxygen tank. It was pretty exciting. And cold. We have some very cold weather on the way.

Iris in her baby girl monkey hat.

Family photo (note the permanent glowing eyes on Iris).

My mom arrived on Friday night, shortly after we got home from the tree-lighting. She has spent the last couple days getting to know the 7-month-old Iris, who is very different from the younger Iris she used to know. Grandma came equipped with a big stuffed dog and a blue ball to entertain Iris.

Grandma and a blue ball

I took Iris to the pediatrician this morning to talk about her weight gain. Basically, she is doing fine and Dr. Sagel thinks she looks great for a cardiac baby. Iris weighs 15 lbs 5.5oz. She gave me some ideas for Iris's feeding routine and her transition to solids. One problem is that Iris still won't take a bottle. She'll bite on it to get liquid to come out, but there's no sucking happening. She also doesn't quite understand the whole cup concept yet -- mostly she just wants to bite whatever comes close to her mouth.

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

entertainment

This past weekend was light on housework/renovations and heavy on entertainment. On Friday, I had a girls' night. The wife of one of Evan's coworkers was dying to see "The Hunger Games: Catching Fire" on its opening night. So he (Jesse) brought over baby Owen and another coworker, Chris, came by with his daughter, Emily. This was the first time I had left Iris for such a long time since she stopped taking a bottle. I was worried she wouldn't go down easily for Evan but turns out all the babies had a great time together. And the movie was fantastic -- I didn't want it to be over after the 2 1/2 hours.

Iris, Emily, and Owen with their daddies

Laurel came over on Sunday to watch Iris for a bit so Evan and I could go out. We had no plans but we ended up finding a New Mexican taco place called Socorro's Street Tacos. The decor was all about New Mexico, which I liked and the food was really good.

As if that wasn't enough entertainment for one weekend, we also went out on Monday night. Carmella came over to watch Iris and we went to see Bill Callahan at the Oriental Theater. Evan introduced me to Bill Callahan when we started dating. Evan's friend Jackson had introduced Evan to Bill. Jackson introduced Evan to most of the music he is familiar with. We enjoyed ourselves immensely despite my forgetting to bring earplugs. Concerts are almost always too loud for me. Below are some of my (our) favorite songs of his. I include the lyrics mostly for my mother who has a sweet way of always asking, "What are the lyrics to that song?" And then, "What does it mean?"

"Rock Bottom Riser"

I love my mother

I love my father
I love my sisters, too.
I bought this guitar
To pledge my love
To pledge my love to you.

I am a rock bottom riser
And I owe it all to you
I am a rock bottom riser
And I owe it all to you

I saw a gold ring
At the bottom of the river
Glinting at my foolish heart
So my foolish heart
Had to go diving
Diving, diving, diving
Into the murk

And from the bottom of the river
I looked up for the sun
Which had shattered in the water
And pieces were raining down
Like gold rings
That passed through my hands
As I thrashed and I grabbed
I started rising, rising, rising

I left my mother
I left my father
I left my sisters, too
I left them standing on the banks
And they pulled me out
Of this mighty, mighty, mighty river

I am a rock bottom riser
And I owe it all to you
I am a rock bottom riser
And I owe it all to you

I love my mother
I love my father
I love my sisters, too.
I bought this guitar
To pledge my love
To pledge my love to you

"Say Valley Maker"

With the grace of a corpse

In a riptide
I let go
And I slide slide slide
Downriver
With an empty case by my side
An empty case
That’s my crime

And I sing (Say Valley Maker)
To keep from cursing
Yes I sing (Say Valley Maker)
To keep from cursing

River Oh
River End
River Oh
River End
River Go
River Bend

Take me through the sweet valley
Where your heart blooms
Take me through the sweet valley
Where your heart is covered in dew

And when the river dries
Will you bury me in wood
Where the river dries
Will you bury me in stone

Oh I never really realized
Death is what it meant
To make it on my own

Because there is no love
Where there is no obstacle
And there is no love
Where there is no bramble
There is no love
On the hacked away plateau
And there is no love
In the unerring
And there is no love
On the one true path

Oh I cantered out here
Now I’m galloping back

So bury me in wood
And I will splinter
Bury me in stone
And I will quake
Bury me in water
And I will geyser
Bury me in fire
And I’m gonna phoenix

I’m gonna phoenix

And here's Tiny Desk concert he did for NPR Music. If that's not enough, here's the NPR Live Concert of his current tour.

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.

seven months old

Iris turned seven months old on Veteran's Day. She is doing everything a seven-month-old is supposed to do: sitting up by herself, drooling all the time (see the spittle on the chin below), increasing the volume of her vocalizations, and developing separation anxiety. Her favorite foods are oatmeal, sweet potatoes, and peas. I have finally started using cloth diapers, something I had planned to do since the beginning. All her medical issues grounded that plan because I somehow found dealing with cloth diapers to be very stressful. 

My dad is in town for a conference this week so we met him downtown yesterday and watched him give his talk. I know nothing about plasma physics but basically understood his talk to express that his model was better at explaining a reaction than another model. Dad was very happy to show off his granddaughter to his other physicist friends and colleagues and Iris was very happy to have the social interaction. She was also very interested in Granddad's name tag.

And here is yet another photo of her, in case you haven't figured out how she looks these days. She looks way too skinny for my liking in this photo but at least she's happy. Iris won't take a bottle so I am trying to get her to learn how to drink from a cup. This is a slow going process but I think she'll get the hang of it in a few months.

I signed her up for daycare today -- she won't start until late February/early March. It's a for-profit center. I am uneasy about sending her to a for-profit daycare, but I'll write more about that later. Despite my reservations, it seems to be a great place and it is close to Evan's work so he can deliver her.

nose-frida

Iris got sick on Thursday or Friday last week. She has been producing more snot than a drunken sailor does swear. Lucky of her (and us), my friend Tinka told me about an amazing snot sucker from Sweden: the Nose-Frida. As a parent, you do actually suck the snot out of the baby's nose. Don't worry, it never gets to your mouth.

I loved it so much that I bought two. And we've been using them both a lot. It's one thing when an otherwise healthy baby gets a snot-heavy cold, but how on earth does a baby on oxygen get enough oxygen when her nose is totally stopped up? She has been letting us know when it's time for another clearing session -- not that we could miss it. I do think that we're past the worst of it. She had a fairly good night last night and I even managed to have a couple dreams.

On an unrelated note, Evan is no longer a car-free commuter and we are no longer a one-car family. We bought a used Toyota Corolla over the weekend. This will cut his commute time by half.

overly optimistic

Iris had an ophthalmology appointment today. I'd been eager for this appointment to get a better idea of the state of Iris's irises. And if she needed glasses I wanted to get them on her as soon as possible. 

Upon meeting Iris for the first time, most people do not notice that she has any particular eye issue. It's only when Evan and I point out that her pupils are huge does anyone seem to take note. By all accounts, she tracks very well and has no problems with peripheral vision or grabbing on to what she has set her sights on. Knowing this, I was not particularly anxious about the appointment. Even though she is at greater risk for glaucoma and cataracts, it seems too early for those to intrude. 

After waiting for slightly too long a time, the ophthalmologist breezed in to the examination room. A fellow was with him, so he began the encounter by quizzing her on WAGR syndrome while simultaneously typing notes on the computer: "What do you know about WAGR syndrome?" She thought for a moment, "Let's see... Wilm's Tumor, aniridia, G is for...genitourniary, and the R is...renal?" I nodded as she finished the G and the R. "That's right," he said and continued talking -- though I have no idea what he was talking about because following him made my head spin. I did stop him fairly quickly and mentioned, "Yes, that's WAGR syndrome, but Iris doesn't have it. Genetics tested her and she doesn't have the gene deletion." He did some tests on her eyes to see how well she tracks, shined some lights in to check out the rest of the eyes and also tested the eye pressure to see where she stood in regards to glaucoma. 

When he was ready to begin telling us [Evan was on speakerphone] about his assessment and conclusion he started with, "I don't want to be overly optimistic..." and he went on to say that Iris looks great and has no need for glasses at this point. She is slightly far-sighted but he doesn't think she'll need glasses for quite a long time. He also said that she might start having trouble with cataracts years earlier than most adults, but maybe not till her 40s at the earliest. "She is probably one of the top two cases of aniridia I have seen, her eyes look great." 

Evan asked about how much care we need to take with her eyes and mentioned the sunglasses we have for her. The ophthalmologist said, "Don't get an ulcer over trying to keep the sun out of her eyes when you're in the car. She'll close her eyes if it gets too bright." He did say a floppy hat is a good idea. We were very happy to hear this good news and though we certainly may not have the same good news in the future, it seems like an auspicious beginning.

Speaking of that floppy hat and those sunglasses, we took a trip to the mountains together over the weekend:

 Iris is down to 1/16L of oxygen, which is almost nothing. I am hopeful that we'll have her off oxygen by the end of the year. We are going to Los Alamos for Christmas, though, and since it's at 7,300 ft, she might need oxygen there. 

We also went to visit Jill & Dara today. These girls are really starting to have fun with each other and we're looking forward to seeing them grow up together.

Dara's older sister, Liliana, had her 3rd birthday party this past weekend and we went to the place they do music class. I think that I will start doing a music class with Iris in January and am very much looking forward to it. 

And finally, we did some family photos a few weeks ago. The photographer is a nurse in the Cardiac ICU at Children's and took care of Iris the first couple days after her surgery. (Here's her website. Denver people -- her prices are really great since she's not a professional). She got some really great shots even though Iris was really sleepy and needed a nap. Here are a couple of good ones.

photo credit: Visible Life Photography

photo credit: Visible Life Photography

trial off oxygen

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.

33

Evan brought home flowers on Monday in honor of my birthday. Cacti, also. Yes, we have a red wall in the living room.

'

We then had a family dinner out at an Indian restaurant.

 

 

Being 33 feels pretty good, all things considered.

 

Iris had an appointment at the Heart Institute and also met with the pulmonary nurse. It was an exciting meeting. They have concluded that her pulmonary hypertension is very mild and that she has likely outgrown her Sildenafil dose. So we can stop giving her Sildenafil. This is the medication that I had been giving her three times a day, once at 4:45 every morning. More sleep for me! We will also try her off Lasix in mid-December, about a month before going back for the next appointment. Otherwise, she's staying on Prevacid and Digoxin for a bit longer.

The other exciting news is that we are to start weaning her oxygen. I have had her back up to a 1/4L for the last few days because she seems to be showing signs of a cold. Evan and I both have some lingering sickness and it seems she got a bit of it.

When we first got the pulse ox for home use I was supposed to keep her oxygen saturation level to above 94%. Today they decided that we can lower that a bit, to above 92%. I don't totally love this as a new threshold but I will start weaning her a bit more once she has recovered from this most recent cold. They also mentioned that some babies have to have oxygen while sleeping for years, even after they are off it while awake.

And, she is on track with her weight. I had been quite worried about this, particularly since I've been sick and not producing as much milk. She weighs a whopping 6.61kg (14lbs 9oz).

 Here she is in her turtle seat.

six months old

Iris is six months old today. I got nervous that she wasn't growing a few days ago so I ordered a baby scale from Amazon. Today she weighs 14 lbs 2.5 oz. That's about on track. We'll get an "official" weigh in next week at the doctor's office.

She loves standing in her turtle walker and is starting to figure out how to navigate the living room in it.

 

Evan and I are both sick. I seem not to have gotten the bug quite as badly as he had. We are really hoping Iris doesn't get it -- coughing, sneezing, congestion, sore throat. 

cold weather

Here are some recent photos taken since the weather has started getting cooler. 

Iris loves this yellow blanket, which belonged to her daddy when he was a baby. She has started looking for it when she gets sleepy and she likes to hold it when I give her medications. A particularly fun game she likes to play involves her pulling the blanket up over her face and then we say "where's Iris?" Then she squeals with delight when she pulls the blanket down. 

This is her new jacket. For some reason all baby clothes with hoods are required to have ears on them. It is cute, I guess. 

walking practice

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. 

day care and stay-cation

After losing our babysitter to a full-time job, we've started a search for day care. I would like to find a place we can take Iris part time so that I can actually make some progress on my dissertation. Evan is starting to come home early twice a week so I can leave and work on it, but that's not going to be enough. And all the potential sitters I find have full-time jobs and want to come in the evenings. So we're considering day care. Also, Iris is starting to get bored during the day and I just don't have it in me to sit and play with her all day long, especially when the house still needs to be cleaned and unpacked.

Our first visit to a local day care was this morning at 10:30am. As we left after the tour, Evan said something like, "The idea of leaving her at day care made my stomach sink." Like a vague, sinking dread. We didn't love this day care. Evan was particularly dismayed at the food offered at the day care...chicken nuggets...fruit cocktail in syrup. If Evan and I could have our way we'd take her to a day care where they served fresh cooked organic food, but I highly doubt we'll find something like that. And in any case, she's not even eating anything yet. Well, I did seem to find a rice cereal that works, but otherwise, nothing. [I'm not wild about giving her rice cereal and plan to give her avocado as her next food. I tried oats today and she didn't seem to love those.]

Evan took a mini stay-cation this week --- two and a half days off of [office] work. He has done an incredible amount of work on the house and has involved himself in Iris's bedtime routine. She is mesmerized by the guitar every time he plays it. Tonight she snuggled in to Jeff Buckley, Elliott Smith, and Evan's standby -- JS Bach. He plans to continue the much needed break by not working over the weekend, too. Tomorrow we'll probably go out for breakfast as long as Iris is up for it and then he plans to go back to the Brazilian jiu-jitsu training center. He went tonight for the first time in a very long time.

Iris had a rough week. Monday night we had another freaky (but shorter) maybe-SVT episode. I had forgotten to give her her Prevacid [for reflux] on Sunday so I decided to try her off it for a few days to see how she did. She still needs it, it seems. She is also teething and has been in some pain because of that. I started her back on the Prevacid and have been giving her Tylenol for the teeth so today was a pretty good day.


Back to day care. It is controversial [like most things related to parenting, and, well, mothering, specifically]. A recent Slate piece sums it up nicely. Even though Evan and I did not love this day care we visited, Iris did like it. That is, she liked the toys and the nice employees and it seemed that there was a lot of potential for stimulation and social interaction -- two things she lacks at home. Some days I am the only person she sees and even though I do think that the parent-child bond is absolutely essential to her healthy development, I do not think that it is enough for her to see only me. And it's certainly not healthy for me to be "on duty" 24/7. Here's a Forbes article summing up the link between 'intense' parenting and depression in women.

I am coping fairly well but it is very definitely time for me to get a bit more of a break than I've had. I lost my wallet and I had a mini meltdown when I realized it. This was the morning after Iris had been up several times in the night and I was sleep deprived and too tired to exercise. A bad mix.  The good news is that my wallet was in the lost & found at Ikea [fully in tact]. And now I'm off to nurse Iris one more time before I fall in to bed and I hope to stay there until 4:45am when I have to give her a dose of Sildenafil.

standing practice

booster seat

Iris is learning how to eat rice cereal. 

lows & highs

When I was in college my roommates and I had a weekly roommate dinner. During that time we'd share our weekly highs & lows. For this post I'll start with some lows and end on highs.

Iris seems to have had an SVT episode last night. She's on medication that is supposed to keep them from happening, but it's possible that it's not working as well since she's gotten bigger and is on the low end of the dosage. Apparently it's possible to have SVT episodes that go by totally unnoticed by parents. But in Iris's case she screams at the top of her lungs and can't stop crying for the duration of the episode. This is what happened last night around 9:30. Evan and I were both asleep and she started wailing out of nowhere. We tried some Vegel maneuvers on her, which slow the heart down. I've seen her heart rate get up in the 220 range. When she sleeps she's averaging about 100 these days and when we finally were able to get a reading on her last night she was at 170. We don't know for sure that it was an SVT episode but it seems likely, mostly because there's nothing else that we can think of to explain it.

Yesterday morning we had an appointment with genetics. Her first round of genetic testing showed no abnormalities, which is a relief. However the geneticist suggested we get additional testing to see whether Iris has some other syndromes that would change her future care. The idea is that she might be more susceptible to aneurysms. I was dismayed to hear this...I want to believe that the worst is behind us, but I have the nagging suspicion that it is not and I frequently wonder whether Evan and I will outlive our daughter.  

After we were done with the appointment, Iris and I walked [well, she sat in the stroller] across the Anschutz Medical Campus to get food at Udi's. I became very wistful when I saw all the people there taking breaks from their jobs. It's very difficult for me not to have any kind of professional life right now. Yes, I love spending time with Iris but the days can be very long and there's a constant feeling that I'm not spending enough time with her when I try to do other work.  

Something that is both a high and a low: Evan has been working really, really hard. I think I write that in almost every post. Despite the diluvial rains he managed to stain our interior doors in the garage and finished installing the kitchen cabinets. I'm grateful that he has worked so hard on the house but he has worn himself out and had to come home early on Monday to take a nap and buy himself some meat to eat. 

Now the highs.

We went to Costco this morning. That's not the high. The people in the Costco parking lot are the high. They are some of the best people in Denver. Every time I go [once a week] someone in the parking lot helps me. Today it was an older gentleman with a New York accent who said, "I'll take that cart for you. You've done enough work." Another high -- Evan and I took Iris out for breakfast this weekend. She did great and we thoroughly enjoyed our morning. Third, having a babysitter come to watch Iris is amazing. I was able to get a little work done on my dissertation and ended up going to get my hair cut. It's a bit shorter than I had wanted but it feels good to have short hair again.

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.