christmas 2014

We had a small Christmas tree this year. Iris loved it, but her favorite thing to do was to throw the ornaments, so we had to keep her away from them.

Iris is almost as tall as our tree. 

Notice the Christmas bunny. 

Evan's parents came in for Christmas and in true Morgan fashion, they helped on home renovation. Our laundry room now has drywall and paint and a counter for folding and some shelving. I hope this helps with our laundry problem a bit -- it is a beautiful counter for folding clothes.

Christmas brought lots of snow, finally. Iris got to play in the snow, but she didn't love the cold. And she thought the slush on her boots was yucky.

On Christmas Eve, we took Iris to the children's service at the Unitarian church. She loved the spectacle, and especially loved the tree. She managed to stay tolerably quiet through most of the service, but at the end, finally, she had to go outside and run around.

Evan's dad brought his copy of The Night Before Christmas to read to Iris. It was fun to have Iris share in that tradition, although she wasn't ready to sit still through the whole thing.

Papa reads to Iris.

Reading on Christmas Eve and giving me a fake smile. 

We started to open presents on Christmas Eve but Iris was too tired to hack it so the adults opened their presents after bed time and Iris finished opening her presents on Christmas day. This year she was more interactive with actually opening her presents, though at one point she had to stop and check on her bunny light.

Opening presents with Daddy. 

The bunny night light. 

Evan's gifts had a hiking theme to them this year, in hopes that we would get outdoors much, much more in 2015. Iris took to the hiking backpack very well demonstrating the idea with her stuffed animals first. 

Christmas afternoon walk

the unifying diagnosis

One of our cardiologists called me on Monday to let me know that results of the most recent round of genetic testing had come in. He said he wanted us to come in to meet with them later in the week (Thursday) and he gave me just a few main details: 

Iris has tested positive for a genetic mutation on the ACTA2 gene on chromosome 10. Because of the mutation she is at risk of stroke and cebrovascular abnormalities, so we should see a neurologist. Gastrointestinal problems are also related to this mutation, so they want to do an ultrasound to check for malrotation of the intestines. He also mentioned that this is very likely a "de novo" mutation, meaning that Evan and I probably don't have it. And with that, we arranged to meet on Thursday. 

I took Thursday off of work and Evan worked from home. I had already had my own echocardiogram scheduled for that morning, so it was easy to pile all the medical stuff into a single day. Evan has been very busy at work, so he was (and is) very sleep deprived. On the ride to the hospital we were able to spend a few minutes checking in with each other about what is happening and what it all means. 

I have been trying to bone up on my 8th grade cell biology and genetics knowledge before the meeting, but the cardiologists were great about avoiding complicated medical terms. We really like her cardiology team, and especially like the new cardiologist/geneticist who is involved in her care. 

Much of what we discussed at the meeting was what I expected to hear. Some of it was unexpected, though. 

• Iris has a spelling mistake known as ACTA2 r179c* and it puts her at particularly high risk of having a stroke. Of all the other cases known, they are "de novo" events, meaning that the parents of the patients did not have the same spelling mistake. The mutation is dominant, so were we to have it, we would also exhibit the same prominent symptoms.  
• This mutation affects connective tissues--specifically smooth muscle cells--in the body and basically explains all of the symptoms we've observed and also tells us that there is a potential for having gastrointestinal problems, strokes, aneurysms, and dissections. 
• The mutation causes a narrowing of the blood vessels in other parts of the body, aside from the aorta, where they commonly see dilation. 
• There is a single codon (set of three nucleobases,e.g. ACG) in which she has a single "mis-spelling." It isn't a deletion, but rather instead of having an "A" or "C", a different nucleobase appears. Dr. Chatfield couldn't remember off-hand what the substitution was, but she's going to get me the full report. The result of the mis-spelling is that an amino acid called arginine is not getting produced and instead cysteine. In other patients with this mutation, they are producing histidine, though, the doctor said the effect is the same. 
• There isn't enough information to be able to predict longevity. The doctors also reminded us that -- as we continue to do our own research -- it's the really severe cases that are discovered first. In theory there could be people out there with this mutation who haven't been diagnosed with this particular defect. However, the ones we know about are all young. Our Google searches have since shown us that the oldest known person with the r179h mutation was 31 and she died a month ago.  

So, we now begin to incorporate this into our lives. Iris shouldn't be lifting heavy weights and should never become a weight lifter. She may need to begin taking aspirin after we get the MRI results. We should encourage joy in her life and ours. 

This is all very scary news...and kind of the worst of what we could have hoped for. We had a good personal conversation with the doctors at the end of the meeting. They asked us how we were handling everything and I mentioned the idea that Evan and I talk about frequently, which is, what is the difference between a meaningful life and a long life? Or, how can we make a short life meaningful? There's a difference, of course, between talking about it and doing something about it. It's hard to know what will make a toddler's life more meaningful since she can't tell us herself...so we have to project our own ideas on to her. And play with lots of bears. 

We are probably in some stage of shock after this news, especially because she seems to be doing so well. Our everyday experience of her doesn't square with this tragic news. On the car ride home we began to process it, barely. At one point Evan said, "So this is like the universe daring us to give up. This is the universe puffing out its chest at us and saying, 'What? Whatcha gonna do now, huh?'" We laughed and then cried and continued with that train of thought. We have both been incredibly fortunate (Evan's word: lucky) for more than three decades and in spite of the universe's taunt, we remain so. Our workplaces are incredibly sensitive to our situation, and we have the time and ability to think hard about the best possible course of action. Feeling particularly emboldened, Evan even said at one point, "Well, we have to have another kid, right?"




*Note: I had originally written that the mutation was r179h. That's incorrect, since the mutation produces cysteine instead of histidine.

twenty months old

The last month has been mostly full of vomit. Iris is down almost a full pound but has lately been eating a lot. I have her on hemp milk now, and I think that will help a bit. I have also abandoned my vegetarian intentions for her and have been giving her (organic, allergy-friendly) chicken nuggets. Anything to get her to put on some weight in a non-dairy and non-egg and mostly non-soy way. It's not that she's allergic to those things, but they don't do good things for her belly. And eggs make her vomit.  

She had her RSV shot last Thursday and vomited that night. So the pediatrician and I agreed today that we would be creative in thinking about future RSV shots. She is supposed to have five over the course of five months. She's had two and I have no intention of letting her get another one in January. It's incredibly painful and traumatic for her to have to be held down and to get two big, huge shots in her legs. It makes regular vaccinations seem like a walk in the park. 

So we still haven't made it a full seven days without vomit since this whole thing started on November 14. I am hopeful that we'll get there this week... keep your fingers crossed. I started her on Losartan again this past weekend since it seems clear that the medication is not the thing that was causing the vomiting. She seems to be tolerating it well. 

Iris has started taking off her oxygen by herself in the morning after we put oil on the tape. Her face is red on both temples because of the tape and she hates to have us touch either temple. It definitely hurts her even though we try to be very gentle. This is a serious downside to having the oxygen off during the day but keeping it on for sleeping. 

Iris loves her morning smoothie.

Really loves it.

Iris's favorite things are playing in the park (especially swinging), reading her nursery rhymes (over, and over, and over), spinning around till she gets dizzy, looking for school buses, testing her limits with her parents, and painting with our nanny.

She has become very affectionate lately, thanks to a book called Hug Machine that she got as a present. She wants to hug and kiss everything. We went outside the other day and she said she wanted to hug and kiss the sun.

What did you say, Gama?

In the park 

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.

 

thanksgiving

Thanksgiving this year was very quiet. We had planned to have a bigger gathering, but it ended up being just my dad joining us, because Iris had been terribly sick for more than a week prior to the big day. She had started vomiting before I left for two nights to a conference on the 20th, and basically kept it up until the Tuesday before Thanksgiving. We stopped giving her the Losartan, in case she was having a reaction to the medication, but it seems like she might have just picked up a stomach bug. 

  

Granddad's pretty crazy about Iris

I went to yoga in the morning, which was a fantastic way to start the day. Jill and her family came for a short visit, and Iris got to practice hugging and kissing a lot. We had a big meal to celebrate, and Dad gave us a Thanksgiving Day quiz. 

Dara & Iris play with toys

I'm not sure when we'll start her on her medication again. I'd like her to gain some weight back now that she's feeling better. She went a few days without eating anything at all and basically only having formula. It's likely that we'll start her on the Losartan in a week or so.

Otherwise, we are doing okay. And by okay, I mean that there are a lot of highs and lows, related to all sorts of health and insurance woes, along with the regular challenges of parenting, taking care of ourselves, and maintaining a relationship. Things definitely look brighter when Iris is feeling good, though, so we are relieved to have her keeping her food in her belly again. So -- there is a lot to be thankful for this year, and I'm glad to have a day devoted to the intention of gratitude.

Iris having fun playing with holiday Tupperware

Iris and her favorite Baba

friday's appointment

Evan here, for a medical update.

We had a big appointment at Children's on Friday. We were a little late leaving the house to begin with, and then we discovered that Iris' car seat was broken and had to transfer all of our baggage to the other car. We weren't very late for the appointment, and we had to wait nonetheless for the team of expensive specialists to assemble. 

When they were ready for us, they called Sarah and me into a smaller computer room while Sarah's mom stayed with Iris in the exam room. They showed us the new CT scan and echo as well as the older MRI and previous echos.  

We didn't really hear anything too new, but we did get lots of great detail from them. 

Iris' original surgeon was there and he gave us his frank and detailed thoughts. His use of medical jargon was unrelenting, but since we already understood the issues we were able to follow pretty well. And we recorded the whole two hour endeavor just in case. His main points:

1. Her ascending aorta is in really bad shape and will need replacement in her life. It is currently stretched to 23mm, which is 4.5 standard deviations (almost certainly not normally distributed) larger than the average for babies her age and weight. The valve and descending aorta on either side of the dilation are normal-to-small in size.
2. The dilation in her ascending aorta is stretching the aortic valve in her heart slightly and is causing it to leak a bit. The leaking isn't bad now, but further stretching would damage the valve and might necessitate replacement with a mechanical valve, which would decrease the quality of her life substantially. He suggested we need to avoid this at high cost. This might lead to a surgical intervention (replacement of the ascending aorta), likely a temporary one, sooner rather than later.
3. It would be great (though unlikely) if this replacement can wait until she's big enough to take an adult-sized graft. Otherwise she would need to get it done twice, which he seemed to consider extremely dangerous. This consideration competes with (2) above, which might make for some difficult decisions in the future.
4. The "aortic root" is at the moment holding up well, though is stretched a bit by the dilation.
5. He is hopeful about her long-term prognosis (with these interventions). He thinks she'll be able to live a long time. He's a real downer, so this actually means something. 

Other points that were made by the group:

1. All signs seem to point to a systemic connective tissue disorder. 
2. The geneticist/cardiologist has a hunch (greater than 50% chance) that the aortopathy panel will come back with some positive results. (In 3-4 weeks.)
3. If any positive results come back, we should get ourselves tested before pursuing having another child. (We are definitely not in pursuance at the moment.)
4. Sarah and I should get our hearts looked at in an echocardiogram to see if we have any similar defects. Just as Iris' defects were all missed because she looked so healthy, we might have something similar. 

And there was a frustrating lapse in care that we uncovered:

After Iris' first surgery the surgeon told us that her aorta was surprisingly thin and unhealthy and would likely require surgery later in life. When we spoke to her cardiologists about this, they said there was nothing of the sort in the chart or surgery notes, and the surgeon couldn't recall such a thing and didn't think he would even have been able to make that determination. Sarah and I and some family and friends were all present after surgery when said it, and our memories were all pretty much in agreement on his points. We pushed the matter, but the conclusion the docs seem to have quietly reached was that we misunderstood what he said. His response to the recent findings exactly echoed his original statements to us ("thin, unhealthy aorta in need of further repair"). This frustrated us, but at least now she's being watched as closely as she should have been the whole time. To be clear, it seems to us that they were not monitoring her aorta like they should have been.

This of course reinforces the idea we've had all along that we are the ones managing and coordinating her care. No one else can take the time to process and integrate all of the thoughts and findings of these specialists, so it's up to us to understand and cross-check and ask hard questions. This is daunting, considering our lack of medical education.

Overall, the news of an impending surgery is really isn't new information for us. We expected as much. We've been processing it for a few weeks and will continue doing so. We briefly talked about the idea of getting a second opinion once the genetic results come in.

nineteen months

Iris is nineteen months old today. Now that she has mastered saying, "No," she has started to excel at miniature temper tantrums. Another funny thing she does is she tries to hold all the important things at once. So, if she has decided that she absolutely must have the bouncy ball, her two blankets, and her teddy bear all at once, she tries to pick them up and walk around with them. This usually proves impossible.

Here she is smiling for Daddy.

The things I did today to deal with the tantrums seemed to work alright. Usually the tantrums start when she and I want different things, so  I explain to her that we are doing my thing first (eat) and then we will do her thing (read). Or, I tell her that we are almost done reading and that after reading we are going to go upstairs and change her diaper. She is usually very good at cleaning up after herself (when we ask her to) and I am trying to reinforce that by having her put her toys away with some regularity.

Her favorite things: baths, running, singing "The Wheels on the Bus," the moon, doggies, bears, people of all ages, and getting tickled.

As far as medical/health items...she is doing fine on her Losartan. They plan to increase the dosage slowly over several weeks. She does occasionally seem a little dizzy. I suppose this will be a life-long medication, though we haven't actually confirmed that.

She has her 18-month check up on Thursday, and will also be getting the first round of the RSV shots, which hurt a lot. I'm not looking forward to that. Friday we meet with the four cardiologists. 

Iris is doing a good job of growing. It seems strange to think that I used to be so worried about her growth. I remember the worry well, though her growth charts show that she is doing fine. She is WAY taller than most girls her age (above the 97th percentile) and has made it into the 15th percentile in weight-for-length.

Iris is above the 97th percentile for height

Iris is above the 15th percentile for weight-for-length

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.

ct scan plan

Iris gets her CT scan tomorrow morning. She has to have been fasting for 8 hours, so we kept her up a little later than usual tonight and gave her some extra food. Then I'll wake up at 4am and give her some formula, which she can have 6 hours before the scan. The fasting is required because she'll be sedated.

The sedation makes preparations easier in the sense that I don't have to try to explain the whole thing to Iris. The hospital does have a little model CT scanner for stuffed animals, so I imagine that we will make use of that tomorrow.

In addition to the scan of the heart, the pulmonary team wants to get some images of her lungs. She'll also have blood drawn for some genetic testing -- an aortopathy panel. And just to round it all out, they'll check to see that her kidneys are flushing the Losartan out properly. I suppose that she'll be on Losartan for the rest of her life, which is a bummer, though I'm glad such a medication exists, I suppose.

We then wait a week to get the scan results, so next Friday we'll meet with a team of cardiologists who will be able to tell us how big the bulge is in the aorta and also give us some more information on the leaking happening with the aortic valve.

In other news, today Iris officially started saying "no." It's fun to see her experimenting with new words to see how people react.

Evan and I are holding up okay. It seems like our emotional reactions to all this news comes in waves. I am much more vocal and weepy with it all, while Evan only occasionally mentions his feelings. This is true generally. We also have been so busy with the rest of life that we've had very little time to sit together and process it all. We work well together when there are decisions to be made, or if there is hard thinking to be done. Situations like this require a lot of that.  

toddler doggie

happy halloween

cardiology check-up

Iris had a cardiology check up on Friday. I took the full day off work and Evan took half a day. I had been preparing Iris for the check-up with a play doctor's kit that we'd been using with Iris's bears at home. So I knew she would do great with the stethoscope. I wasn't sure about how she would do during the echocardiogram, which she hated last time. I had tried to explain what would happen several times to her. 

When we got there, she was extremely calm and let everyone do what they needed to do. She was so calm during the echo that Evan checked to see whether her oxygen was flowing. She was mesmerized by a cartoon playing in the background for most of the time, but occasionally she would say, "all done," or "up." Evan and I would then try to entertain her with something else, like the itsy bitsy spider. 

We did get some bad news. The echo showed that her aortic root is bulging and the valve is leaking a little bit. This is a new development. They can't determine the size of the bulge based on the echo so we have to do a CT scan in the next couple weeks. Because of this finding, the doctors are pretty confident that Iris has a connective tissue disorder, though we know that she doesn't have Marfan syndrome, which she was already tested for. So that means it's probably just a "not otherwise specified" expression. 

The bulge isn't an emergency situation, and next steps will be determined after the CT scan. They recommended that we start her on losartan, a blood pressure medication. We said we wanted to wait a little while to get some more information about it, and I expect that we'll start her on it in the next few weeks. Dr. Landeck thought that it was likely that there would need to be a surgical intervention at some point, just like Dr. Mitchell thought right after the surgery. 

The valve leakage is minor but should it get more severe and require a valve replacement, then it's likely that she would need a mechanical valve, which would require her to be on blood thinners for life. 

In addition to the CT scan they plan to do further genetic testing. They now are sure that insurance will cover further genetic testing, which they weren't sure of previously.

Evan is being appropriately circumspect, while I am crestfallen. None of this is coming as a surprise, really, and it's far too early to know what the implications are. There was a time when I thought that it might be smooth sailing, but that was a misguided hope. Mostly, I am trying to think about the next step, which is trying to get Iris ready for the CT scan, which will require her to have an IV so they can do an angiogram.

These are some photos of her after the check-up.

eighteen months

At eighteen months old, Iris loves to practice putting on her sunglasses by herself and wearing other people's shoes. She has also gotten very good at saying "I don't know."

seventeen months

Our girl is seventeen months old now. She is outgrowing her "This is how my story begins..." onesie. She is a ball of energy and is starting to figure out how to push her boundaries. For example, she likes to jump on the couch careen all over it in a way that is clearly dangerous. But she is daring us to come get her. So, she knows how to get our attention. Speaking of attention-getting, she is also learning to screech at the top of her lungs just for fun. I do my best to ignore that. It's clear that she is testing out her abilities to influence people, which is actually fun, except when it's dangerous or hurtful to others.

She had a visit to the ophthalmologist a few weeks ago. I had forgotten to put it on my calendar so I had a work conflict. Evan took her to her appointment and reported that the ophthalmologist said her case of anirida was totally boring, and that if someone had told him all her symptoms and that she had totally normal eye development other than the iris, he would say it was a misdiagnosis of aniridia. This is because aniridia typically comes with a host of other eye malformations and problems, none of which are present in Iris.

She has been getting a ton of teeth in recently, which is painful for everyone. But she is getting a lot better at eating and my mom keeps saying that she can't believe how much Iris eats. I, on the other hand, am always trying to figure out what Iris is going to eat and how we can bribe her to eat more. Her favorite foods are guacamole, almond butter, cheese, refried beans, tomato sauce, sweet potatoes, blueberries, bananas...you get the idea.

"Smile!"

The only way she eats raspberries now -- on her finger.

Downward dog

nut butter tower & encounter with dog

summer's end

We've had a lot of rain recently and it feels like summer is coming to an end. There are a host of things we didn't manage to do this summer. But really, who cares? We've made a lot of happy memories, if only in our backyard and living room. 

Iris has been getting more and more rambunctious, energetic, and quick to laugh. The other day she wanted to get up on the La-Z-Boy with all her stuffed animals. 

 

Then I asked her to smile.

 

She has become very obsessed with water. She really loves playing outside in the little wading pool we have. The photos below show her encounter with the hose. She got a little too much water in the face and got scared off.

Water from the hose! Yay!

Water in the face! No!

Time to flee from the hose

sixteen months old

Iris is sixteen months old now! Her favorite things are teddy bears, dogs, cars, and her green shoes -- which she can put on all by herself, thank you very much.

 

 

 

She also really loves to help Mama sweep and wipe up after meal times. 

 

 And that's a big job, considering how messy she gets.

 

My cousin Eric made a surprise visit to Denver recently and we got to hang out at the park for a bit. He's got the writer's bug. I like to think that's a bug that we've got running around in our family.

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.