patience

Patience is not my strong suit.

Baby number #2 is due tomorrow, January 2, and I am frustrated that she hasn't made her debut yet. I was convinced that we'd have an early arrival, but no dice. I'm also still totally freaked out at the prospect of having two children and I have no idea how we are going to make it work.

In the last few days Iris has started shouting at my belly, "Baby, come out! I want to play with you!" She has also been helping my mom rub my feet, which is especially cute.

Thanks to my mom's free babysitting, Evan and I have seen more movies at the movie theatre in the past few weeks than we have in the past two years. Three. It's possible we will get a fourth in before the baby comes. I'm also doing my best to cherish the little cuddle moments I get with Iris that will certainly change once the baby arrives.

Basically, though, I'm not sure how to be patient as I grow increasingly uncomfortable and wish to sleep on my stomach again. For now, I'll go drink some raspberry leaf tea and work on finishing our Christmas cards... 

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:

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.

 

bike riding

We finally got a baby bike seat for President's Day weekend. When she manages to stay awake, Iris loves bike riding and even seems to like her frog helmet. It is kind of difficult to ride with her since we have to carry her oxygen with us. The oxygen tank comes with only a very short strap so it's difficult to wear (see Evan modeling below).

Iris's first bike ride

Evan, Iris, and the oxygen

She has been tearing off her oxygen recently, so we've done some unexpected trials off oxygen. This happened on both Sunday and Monday.

Iris at the park (no oxygen!)

Grandma is still in town -- amazingly -- although she is beginning to talk seriously about going home. This means that we'll begin suffering again from our lack of home organization systems; although I'm happy to report that we've finally figured out a sustainable laundry system.

I have spent a lot of time on the phone getting Iris ready for daycare and making sure everything is in place for our upcoming trip to Texas (at the end of March). We will get a portable oxygen concentrator for Iris that we can take on the plane with us. Evan and I are pretty disappointed that she is still on oxygen and have feared that the doctors were wrong about her ever getting off oxygen. We have seen slight improvement in her saturation levels over time -- where she would once drop quickly on room air, she now overs at around 89-90. This level is high enough for the cardiology team but the pulmonary team wants her to be higher, and thus we continue with the oxygen.

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

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.

mirror time

Iris was smiling at herself in the mirror.