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

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. 

hosptial vacation

I went home the other day to get some more supplies for our hospital stay. We just completed a full week at the hospital with Iris. It was strange to walk into the house and see everything as we had left it last Saturday evening. We were in the middle of some big organizing projects when we decided we needed to take Iris to the emergency room. Those projects are still in midstream a full week later.

We took our time getting ready for the ER visit and even packed some extra supplies under the assumption that we would be staying in the ER over night (but not a whole week). Iris had had a bad cold and cough starting Monday but it was far worse on Saturday, when we couldn't keep her oxygen levels up and she was needing more than 1LPM of oxygen to get close. She also had a fever of 103 degrees (Fahrenheit), which we didn't catch at home.
 
Turns out she had two respiratory viral infections that have completely sidelined us. Rhinovirus (the common cold) and human metapneumovirus (hMPV). The more nasty of them is the hMPV, which can cause increased oxygen needs even in perfectly healthy children. She is taking a long time to recover, which is expected with ACTA2 r179 kids. This may be because she has a harder time getting secretions up and out of her lungs because her airways are floppier than typical kids.

Iris has basically been in good spirits the entire time we've been here, though that has fluctuated with her fever. Tylenol helped immensely. This video is from our second night in the ICU. Iris is giving us her version of, "Tom, Tom, The Piper's Son."

Evan and I have been with Iris the whole week. Evan has worked from her hospital room and I have taken sick leave and sloughed off a few time sensitive projects to a co-worker. I did go to work briefly on Friday, and Alyssia and Ky came to help out.

We requested a big bed for her when we got to the ICU, mostly because she wouldn't let me put her in the crib they had for her. So we had to sign a waiver saying we wouldn't leave her by herself in the bed since she was too young to be trusted in a big bed by herself. The advantage of this is that we have a an adult-size twin bed and can "sleep" right next to her. We have also been able to get a sleep room the past three nights, and we've been taking sleeping shifts.

Father's Day in the ICU

The plan of care has involved breathing treatments and suctioning (every four hours) to get the secretions out of her lungs. She hates these, but endures them when she's on Mommy's or Daddy's lap. As soon as two nurses walk in she starts saying, "No boogies!" She has definitely gotten used to the treatments and just yesterday started reenacting them on Buddy Bear. She would say over and over, "Okay, your turn, Buddy Bear.... [pause]....my turn, Buddy Bear...."

"Your turn, Buddy Bear."

"My turn, Buddy Bear."

Her treatments have gotten easier over time, also, because they're actually succeeding in getting everything out. So we don't have to do the deep suction anymore -- the most painful of the four treatments. Overall, the pats on the chest with the CPT cup are fine, the 5-minute breathing mask is also not awful. The nasal aspirator is stronger than our NoseFrida, and involves more saline.

It was a big step forward when we took out her IV, which had been on her left arm, making her left thumb unavailable for sucking. She couldn't suck her thumb for the first few days and so I would hold her hand as she fell asleep. She would ask for her pacifier, which she would just hold in the other hand. Finally, when we took the IV out, she didn't use her left hand, which was worrying. It took probably a full 24 hours before she found her thumb again. Now she will occasionally say, "We took the IV out!"

The "no-no" kept her from moving her IV arm.

It's been a roller coaster ride this week. Iris went from being on "heated high flow" oxygen in the ICU down to "wall oxygen," then back on "heated high flow." Heated high flow separates the amount of air getting pushed into her lungs (the flow) and the level of oxygen mix. So at her highest she was on 8LPM of flow and 80% oxygen. At home (or what they call "wall oxygen" at the hospital), she is on 100% oxygen and the flow can vary up to 4LPM. She'll never get up to 4LPM at home because we are supposed to bring her in to be seen if we have to go over 1LPM.

When she is on the heated high flow she has to stay in bed (or very close to it) because the tubing is so short. On the longer tube she gets to run around and look out the window, which is exactly what she did the first night out of the ICU. There were heavy storms during the week and that night she got to see her first rainbow. [I don't have a photo of the rainbow, but I'll post a photo of her at the window soon.]

Dancing next to bed (on heated high flow)

Shortly after that we had to go back on heated high flow and pump her with Tylenol to fight the fever. The fever dissipated mid-week, around the time we gave her a dose of Decadron, but she stayed on heated high flow.

Yesterday (Saturday), though, was a big step forward. She got off the heated high flow again and over night made it down to 1LPM on the wall oxygen! That is close to what she would have to be at to let us go home. I'm looking forward to rounds this morning to hear their thoughts.

She has started a twice daily course of Flovent, which we will keep her on for the foreseeable future. This seems to be not at all uncommon for other ACTA2 r179 kids so we feel fine about taking this course of action, especially since she does occasionally have increased work of breathing at home, even when perfectly healthy. This is something we had tried hard to avoid, but now seems like an obvious next step. And it's not necessarily something that will be a lifetime medication (like the aspirin and losartan).

A big "thank you" to everyone who has visited us, sent us books, toys, and food. I am pretty sure I've gained at least five pounds given all the food and lack of exercise. I did finally get a walk yesterday afternoon after Evan went home briefly for more supplies (and brought me my walking shoes). The visits and toys/books have really helped pass the time. I'm still not sure how we would have survived without the two TV shows -- Bubble Guppies and Curious George. Let's all hope we get out of here in a day or two, max.

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. 

twenty-three months

Iris has outgrown the onesie that I have been using for her month-by-month photos. I blame my tardiness in posting on the loss of that onesie. (It's not actually lost. It's just in our "too small" pile, now). I'm now preparing to start counting Iris's age in years rather than months. That'll take some getting used to. 

Wearing her Easter outfit from Nonna & Papa

Just making a silly face

My mom has been visiting for the month and she has taught Iris the story of the Three Little Pigs. So Iris loves to say now, "Once upon a time, three little pigs..." I've done a bad job of getting photos of the two of them together but they sure do have fun and Iris wears my mom out. She has tons of energy.

I've recently come around to the idea that maybe Evan and I haven't been giving Iris's diagnosis its full weight. We were talking to someone recently and explaining the whole situation with Iris. We are able now to glide over the details pretty easily: there is definitely a second heart surgery in our future, possibly another medication to add if a valve needs to be replaced; she may have brain surgery to help increase blood flow and possibly surgery on her intestines if they find that she does indeed have malrotation. I manage six specialists and have multiple appointments with each of them every year, Iris is on three daily medications (not including the oxygen when she sleeps). And her longevity is not at all a sure bet. Kind of the opposite, actually.

To share all of this information at once gave me some perspective: it's a lot to deal with. Perhaps we haven't been fully acknowledging exactly how big of a deal Iris's health problems are. We have acknowledged it in a sense: we can talk about it freely without being brought to tears anymore. I spend a lot of time thinking about how we'll shepherd Iris though this part of her life without making it her entire life. And we have a growing list of books to read to help on all related aspects.

But I'm not at all sure that we've allowed our lives to catch up with the reality of how stressful the diagnosis is. Neither of us has really taken much off of our plates to make space for the added work of caring for a daughter with special medical needs and an extremely rare genetic diagnosis. Evan is working hard, as always, and I'm technically working full-time and working on my dissertation. 

I have been able to come up with some very creative work arrangements thanks to my extremely accommodating supervisor. But it also seems like I should either figure out how to reincorporate my dissertation into my life or just decide to let it go. And, of course, I want to spend time with Iris while I can.

We are very excited about Spring. Here's some fun we've been having recently:

aquarium

Iris had her first trip to the aquarium last week. In addition to being a massage therapist, our nanny works with a non-profit that was having a fundraiser at the aquarium. So we did the very uncharacteristic thing of taking Iris out on the town after dinner time.

My mom had come in for short visit because Evan had a business trip in California. At some point during the last few weeks of vomiting we decided that it was better to have two people with Iris in the evenings to help out in case of vomiting.

Iris wasn't really sure what was going on and it took her a while to figure out that there were living creatures behind the glass. Finally, she got really excited about them and was totally wired. She also wanted to make friends with all the little people she saw, and was sometimes more interested in the people than in the water bound animals.

It was hard to get used to her running freely and not having to worry about the oxygen cord. It was also a weird sensation [in a good way] to have Iris look like a totally normal kid, instead of a sick baby. We took the oxygen with us and left it in the car so that she would have it on when she fell asleep.

Sarah, Iris, Alyssia & Ky 

Iris and Grandma look at the fish

Still looking at fish

Very excited about the fish

untethered

Iris surprised us by continuing to vomit into this week, making it three weeks since the vomiting first started. After a break during the few days my dad visited, she started up again. Evan also came down with a totally debilitating stomach flu. He was able to pull it together to help our nanny clean up some of Iris's vomit while I was at work one day, but spent most of his time in bed. I came home that afternoon with chicken soup and saltines for the both of them.

The days have blurred together for me, but we took Iris to the emergency room one evening this week after vomiting. It wasn't exactly that she had a true emergency. Rather, we just had to have someone look at her. I had been on the phone with our pediatrician and our cardiologists several times in the past couple weeks, but hadn't brought Iris in to see them. This was partially because we had the idea that it was possible that Iris got a stomach bug from her most recent visits to the doctors and why expose her to more germs if everyone was reasonably sure it was a stomach bug?

The trip to the emergency room ended up not being all that helpful and we subjected Iris to a needless x-ray of her belly. That night I decided, "No more formula." She hasn't vomited since stopping the formula, which, by now makes four vomit-free days (assuming we make it another few hours tonight). She's now on rice and quinoa milk, and I'll probably add hemp milk to get in more calories. She is eating well and I think she'll put on some of the weight she has lost, which is 10 oz.

I took her to see the pediatrician the next day and she gave me some little jars to get stool and urine samples. Otherwise, she agreed with stopping the formula and wanted to get probiotics into Iris in any way possible. She also wants me to talk to the cardiologists again, which I was already planning to do.

No cannula in that nose.

In the midst of all of this, something great has happened. Iris no longer is on oxygen during the days! I can hardly believe it. Neither Evan nor I fully understand what it means. We've lugged around this heavy and annoying oxygen tank with us for 1 1/2 years, along with the maddening oxygen cord.  We've been longing for the day when we can free her from her oxygen leash and yet it feels so anti-climactic. And now, suddenly, we have a baby free who can run anywhere she wants, untethered. She still has oxygen when she sleeps, so we are not totally free of the oxygen.

Dara and Iris hanging out on Saturday afternoon.

Evan went out of town for a business trip for a few days and my mom flew back to spend a few days with us to help out. She had just been here a few weeks before and was here for the beginning of the vomiting episodes. She has been a huge help in every way imaginable. The house is cleaner when she is around, and the endless pile of laundry in our TV room diminishes. We also get as many date nights as we can cram in. And it's really fun to hear Grandma and Iris laughing together.

Iris loves her Grandma...

...because Grandma makes funny noises.

 

ct scan done. now we wait.

Thanks, everyone, for sending us your love & support. Iris did really well, though she hated to have the gas mask on. It was really hard to have to hold her down while they put the mask on her. I'm frustrated that I didn't insist that we do it in a different way, but now I know for next time.

Just before the anesthesia

We got to the hospital around 9am and we left Iris just after 10am. We waited for maybe an hour or so. I went to the hospital library and checked out some "parenting sick children" books, which Evan and I might read together.

We were finally allowed to see her after she had already woken up. We had made it clear that we wanted to be allowed to see her the first possible moment, but we don't feel like we were listened to at all in this regard. She was awake and the nurse had been trying to give her Pedialyte and apple juice before letting us see her. She was very scared and her throat hurt from the breathing tube that she had had inserted.

We hung out in the recovery area for a while and fed her lunch and that helped a lot. She was very groggy and needed extra oxygen since the anesthesia wasn't entirely out of her system.

Very groggy, but happy to be in a wagon.

The rest of the day went fine. She is on extra oxygen now -- a full liter -- but the anesthesiologist told us that she should be back to her normal flow tomorrow. We went on an evening walk and she kept talking about the moon. She loves the moon. 

And something really exciting happened this morning. Iris used her potty for the first time. Evan and I were so excited.

We have to wait a week to get the results of the CT scan, and who knows how long the genetic test will take. One of the doctors we'll meet with next Friday is a cardiologist/geneticist and she suggested an aortopathy panel, which tests for the other genetic mutations that would cause the weakening in the aorta that we see in Iris.

I don't know whether I hope they find something or whether I hope that the genetic tests turn out negative. I think that it makes sense to treat Iris as if she has a connective tissue disorder, even if they can't pinpoint the gene causing the trouble. The problem is that if she needs surgery again, the connective tissue disorder complicates the possible remedies. So, it would be good to know for certain that she has/doesn't have one.

news

Iris had a pulmonary check up at the end of July. The visit itself was pretty uneventful, so really, no news is good news. Iris is making progress on coming off the oxygen. She is down to 1/8LPM and is frequently pulling the cannula out of her nose. This is a good sign, because it means she doesn't want the extra help. She puts the cannula back in her nose when she needs it. Last night I asked her to put it in her nose, and she did it pretty easily. She is also at the stage where she is shaking her head, "no," so if she doesn't want it in her nose, she makes it very clear by squirming, flailing her hands, and shaking her head.

As far as her growth goes, it's looking great. The nurse didn't do her weight quite right -- she forgot to account for the diaper Iris was wearing. But basically, everything is looking really good.  Notice that on the length-for-age chart (the last chart) that she is basically off the curve. She is very tall. (I can access these charts from her hospital chart online. They don't make all the doctors' notes available to us online, but the charts are fun to look at.)

Going back to the hospital for our clinic visits is always a surreal experience, and I expect it will be forever. Every time I see the logo and pull in to the parking lot, I have little flashbacks to the weeks we spent in the hospital.

It's a nice logo, right? Playful, hopeful. It has to be because after a (short) while in the hospital, you realize how much pain and sadness lives there, too. Thankfully, we have a lot of hope and the pain and sadness lessens with each day. Even so, it would be very easy to fall into self-pity, especially when worn down due to sleeplessness or other stressors.

The second bit of news I have to share is: I got a job. A full-time job. I'm very excited about the basics of the job, and also about the people I'll be working with. They are letting me start part-time while I get care situated for Iris. Our nanny, who is wonderful, isn't available full-time, and she just finished massage therapy school, so wants to pursue that.

The last several days have been stressful because I have been screening potential nannies and have been looking at in-home childcare options, as well as day care centers. A bit of advice to everyone: Google yourself every once in a while -- it's amazing what I've been able to find out about some of these possible nannies based on their names, location, and sometimes a phone number. It's very easy to decide which ones I don't want to hire after I see what they're talking about on Twitter, for example. My current nanny posts things about accepting yourself for who you are, being helpful to others, and generally inspiring things. She's great.

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.

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.

the dirty projectors dance

Summer is upon us. The last week was very hot and Iris spent much of the time in diaper only. She is increasingly active and loves to run across the room. She also loves music, as you'll see below. She is dancing to "Impregnable Question" by The Dirty Projectors. 

We have a pulmonary check-up in about a month. Iris continues to have increased oxygen needs, her happy spot is somewhere between 1/4L and 1/2L. This is more than double what it was in October of last year, when she was down to 1/8L. I try not to think about this troubling fact very much because there's nothing we can do about it and the doctors are firm in saying that she will, eventually, grow out of the need for oxygen supplementation.

Iris was sick with a stomach bug again. It seemed worse than the stomach bug at the end of April, if it was in fact a stomach bug. She lost some weight and that really worried me. She's much better now, though, and has gained back the weight she lost. She really has the appetite of a horse.

When Evan feeds her, he models the deliciousness of the food by pretending to put the spoon of food in his mouth and gives a satisfied, "Haummm!" grunt that is supposed to suggest satisfaction. The effect has been that Iris has started giving the same sound effect when she eats something she likes. It's very adorable. She also has heard me say "Achoo!" after she sneezes a lot so she has started mimicking that noise by saying, "Atoo!"

The last piece of news is that we've had to confiscate all books from Iris's toddling radius for the time being. She is teething and has found books to be particularly tasty. This means that she is literally devouring books. She is usually pretty loud when she plays, if not squealing or babbling, then she is banging things together. Sometimes when I'm in the kitchen and not watching very closely, I realize that things have suddenly gotten very quiet. This is never a good sign. And recently it has meant that yet another book has been sacrificed for the sake of Iris's teeth. 

springtime activities

 

Iris had her first Easter egg hunt. She wasn't really interested in the hunting aspect, but more the egg-shaking aspect. She picked up two eggs at a time and shook them and that was good enough for her. The event was mostly overwhelming for her since there were so many kiddos swarming the place. Evan's mom gave Iris her Easter dress and my mom sent the white sandals.

We visited the botanic gardens on Tuesday--Earth Day. It was a free day at the gardens, so it was swarming with people. There is an iris and lily garden that had just a few irises blooming. We stopped to get a couple photos with some irises.

 

One of Iris's favorite springtime activities is to play in our backyard and put rocks and dirt in her mouth. 

We are headed to State College next week so I can defend my dissertation proposal. Iris is still on 1/2L of oxygen, which is a great disappointment. After getting back from Texas in March she had to go all the way up to 1/2L and hasn't come back down since. We are about to start her on a short course of steroids (prednisolone) after having tried a few days on a diuretic (Lasix), which had no effect. 

We visited Iris's daycare on Thursday. She is set to start the first week in May and I am terrified. Even though the staff will get trained on her oxygen care I am sure that they are going to neglect her snotty nose and one of us will come to pick her up one day only to find that she is completely stuffed up and therefore getting no supplemental oxygen. She also isn't great at taking a sippy cup and she is going into a room where they don't really do bottle anymore. Evan reminds me that I am doing my motherly duty, which is to freak out before starting daycare. 

first birthday

Iris's birthday weekend began with a trip to the cardiology and pulmonary team. Actually, it began on Thursday evening with my dad arriving from New Mexico for the weekend. He helped on Friday with cleaning up the house and also went with us to her clinic appointment.

Evan took off work early so he could be at the appointment in person (he usually attends by phone). Since getting back from Texas, Evan had been particularly preoccupied with the idea that we would have to move to lower elevation so that Iris could have a normal life. It was discouraging to us both to have to put her back on oxygen, and since returning she still has higher oxygen requirements.

After doing a chest x-ray to look at the lungs and an echo to look at the heart the doctors assured us that everything looks good on her and that we shouldn't be discouraged by her continuing reliance on supplemental oxygen. It seems that babies continue to develop lung capacity--more alveoli develop--well into childhood. At this point her heart seems to be working well so we don't have to go back to see the cardiologists for another six months, but we will continue on the 3-month track with the pulmonary team.

All this was enough to convince Evan that we did not have to start planning the move away from Denver, and we could continue with the plan to do a raised-bed garden out in the backyard.

On Saturday we had her first birthday party. Evan made red beans and rice and hummus. I made some of Iris's favorite items -- curried mushrooms and onions, sauteed zucchini. Jill made Iris's birthday cake for us. I had been planning to make some kind of fruit dish for her, but then decided it would be okay for her to have her first taste of cake. Jill decorated the cake with blue and green icing since these are my favorite colors. (She didn't tell me she was going to do this, but she did ask me what my favorite colors were earlier in the week, so it can't be a coincidence.)

Jill, Dara, Sarah, Iris in the kitchen with the cake. photo credit: Nelson Hoffman

The party was a lot of fun -- it was the first time we had hosted a large group of people in Denver and both Evan and I realized how much we miss having frequent social gatherings at our home. Here's to having a summer full of social gatherings.

Janna brought the youngest party-goer -- Bianca is just five weeks old. Iris was pretty interested in her and tried to give her a York peppermint patty.

Iris and Bianca. photo credit: Nelson Hoffman

 It was hard to get Iris to stay still for the cake and singing.

photo credit: Nelson Hoffman

 The actual eating of the cake was anti-climactic. She liked the cake and took some of it and continued to run around the room, but she did not squeal with delight and smash her hands or face into it.

The first taste of cake. photo credit: Nelson Hoffman

Running with cake in hand.
photo credit: Nelson Hoffman

Iris continued to run around outside where the frisbee players were hanging out. It seems that she is going to be a girl after her father's heart.

Running with frisbee.
photo credit: Nelson Hoffman

Running with frisbee.
photo credit: Nelson Hoffman

So. After a year, Iris's favorite things to eat are bananas, strawberries, kiwi, yogurt, cheese, Cheerios, curried onions and mushrooms, tomato sauce, and red beans and rice. She loves to read books, play with her toys, take baths, and roam around upstairs. She is walking very well--toddling, I guess you would say. And can also walk backwards and keep her balance while bending over to pick up a toy. She knows a few signs: "birdie," "all done," "more," and "help." She doesn't use them with great regularity, but she does know them. She also just learned how to throw her hands up into the air when someone asks her, "Iris, how big are you?"

Now that I think about it, her birthday celebrations probably began on Thursday night. Evan and I went back to the photos and video we have from a year ago. Yes, we have a film of her birth. I know, too much information, right? It was really incredible to watch and to relive so many of the emotions. Those early days feel so far away and they have passed so quickly by. That's what they all say...but that doesn't keep it from being true.

I'm thrilled to have a one-year old and revel in each new word she learns and sound she makes. She has recently taken to hugging our legs while we stand in the kitchen preparing breakfast. It's enough to make up for all the sleepless nights.