Sunday, January 26, 2014
Tuesday, January 14, 2014
nine months old
Iris now has nine months under her belt. She is crawling all over the place and pulling herself up and balancing. We have a play pen in the living room that she uses for standing practice. She is also all about eating Cheerio's.
We started a music class this past weekend. Iris loved all the activity, although she was a little overwhelmed by it, too. The music class lasts ten weeks so it will be fun to see her start to learn the songs and the movements. She is very good at clapping her hands and likes to take other people's hands and make them clap.
We had a cardiology and pulmonology appointment on Friday. She is growing well -- 29" long (93 percentile) and 16 lbs 11 oz (25 percentile). We stopped her final medication -- the digoxin. I am supposed to observe her over the next few weeks to see whether she has another SVT episode after coming off the medication. I'm also able to measure her heart rate using the pulse ox.
Iris is still on oxygen, which is kind of a bummer. I had hoped she'd be off it by the new year. But she has had a cold and I'm just taking it pretty slowly.
Saturday, January 4, 2014
in retrospect
One of the holidays I celebrate least is New Year's. At least not in the traditional, stay-up-till-midnight way. I can't think of a worse way to celebrate something than to stay up well past my preferred bedtime and then suffer the whole next day for lack of sleep. This year we were all asleep by 9pm, I think. We did actually go to a party and meet some nice people, though. It's just that we left by 8:30pm.
I also happen to love New Year's. I love any excuse to look back and take stock of a given period of time. I love to set new goals for myself and imagine ways I will work to improve my character, habits, or relationships.
For the beginning of 2014, I have quite a lot to look back on. I hope that when I am 83 I will be right in saying that 2013 was the worst year of my life. When something bad or unpleasant would happen to me I used to have a habit of saying, "Well, if this is the worst thing that happens to me in my life, then I will have lived a pretty good life." I guess I still have that habit. But it was hard for me to complete that sentence after May 2013. I still feel traumatized by the three weeks I spent in the hospital with Iris -- particularly the first week in which the doctors didn't know what was wrong with her and they just kept doing test after test and I was not able to hold her or to comfort her. I can't think of how it could have been worse. Add to that Evan's starting a new (very demanding job) and that we (stupidly) bought a fixer-upper of a house.
I'll never forget the look on the doctor's face when he noticed her unresponsive pupils. This was on the night we were admitted to the NICU after having spent the entire previous day in the emergency room. Evan was with us by then and we were talking to the team of doctors about Iris's condition and their plans for future testing since they still didn't know what was wrong with her. Tensions were high and Dr. Wymore was attempting to cool us down and talk through everything we knew up to that point. The nurses were doing their routine checks on Iris and I made sure that I was facing Iris as our huddle gathered. At one point the nurses called one of the doctors (whose name I can't remember) over to look at Iris. I only glancingly paid attention at this point because I was trying to focus on Dr. Wymore and recount where we had been and what had happened. The doctor who had been called over to look at Iris looked up at this point with a very concerned and almost scared look on his face. He didn't want to interrupt our conversation and Dr. Wymore had her back to him. So I stopped us all and asked him, "What -- what is it?"
He had Dr. Wymore look at Iris's eyes and finally they told us that the pupils were unresponsive to light, meaning that there might be a hemorrhage in her brain and that we had to have an emergency MRI of her brain. Up to this point Evan had been adamant that Iris clearly was just suffering from reflux and was perhaps sick from a bug she caught on the plane ride. After this we were all chastened and my fear skyrocketed. I can't recall entirely, but it seems that they weren't able to get the "emergency" MRI until the next morning. It was already fairly late in the evening by the time all this started. This might have been the worst of the worst.
One might think that getting admitted to the NICU from the ER would have been the worst of the worst. But the doctor who admitted us managed to keep me incredibly calm and kept saying that everything would be fine. So our ambulance ride to the NICU from the ER (which was at a different branch of Children's) seemed not so terrible. I called my mom and told her she was right to have been worried about Iris's breathing from the start. I told the EMT driver that this was going to be the "I told you so" phone call. [Note: My mother is not the "I told you so" type of person, so she did not, in fact say, "I told you so."] It helped, of course, that everyone who works in the ER and NICU has been trained to be incredibly cool during emergent situations. I think I was probably at my best when the doctors or nurses were talking to me about the moment at hand. I was required to focus on the present and think logically. This kept me from stepping back and totally freaking out about where my daughter was and the pain she was probably experiencing.
A second worst-of-the-worst moments was, of course, when they showed us what was wrong with her heart and explained to us that they would have to do emergency heart surgery. There were many worst-of-the-worst moments, now that I think harder about it.
I am ambivalent as I write, though, because 2013 also held some of the best moments of my life. In April I gave birth to a very strong baby girl. I don't know whether Evan and I have ever felt closer than at her birth. And the doctors at Children's Hospital here in Denver gave her a second life and a second birth. We experienced more love and support from our family, friends, and even strangers than I thought possible and Iris has proven to be an immeasurable joy. She is tirelessly happy and loving and shows empathy when I have cried in front of her. She has an insatiable curiosity and is easy to console.
The year ahead holds much promise. Iris becomes more of a handful every day and seems to have boundless energy. Her new favorite activity is to pull herself up in her crib, test her balance, and then let herself fall back on her bottom and then get up and do it again. She starts daycare in March and will benefit tremendously from the socialization and stimulation. Until then I plan to take her to story times at the local library and we are starting a music class with her than I'm sure she'll love. Evan feels increasingly comfortable and valued at work and has made friends out of some coworkers. He now drives to work rather than use public transportation. That was not in our original plans, but it gives him more time at home with us. He has also been able to get back into his jiu-jitsu routine at a local training center. He is spending more time playing guitar for Iris and reminding himself of his love for literature. As for me, I am still working on my dissertation proposal. I have run into problems with my data but am making progress. I still hope to defend the proposal by May. I have gotten into a good gym routine at the gym across the street but hope to get back into running shape this year. I also hope to work on my musicality by picking up the guitar again.
This was a very difficult year. But I end it in a better place than where I started (literally, and figuratively). Perhaps this has been the best New Year's of my life.
I also happen to love New Year's. I love any excuse to look back and take stock of a given period of time. I love to set new goals for myself and imagine ways I will work to improve my character, habits, or relationships.
For the beginning of 2014, I have quite a lot to look back on. I hope that when I am 83 I will be right in saying that 2013 was the worst year of my life. When something bad or unpleasant would happen to me I used to have a habit of saying, "Well, if this is the worst thing that happens to me in my life, then I will have lived a pretty good life." I guess I still have that habit. But it was hard for me to complete that sentence after May 2013. I still feel traumatized by the three weeks I spent in the hospital with Iris -- particularly the first week in which the doctors didn't know what was wrong with her and they just kept doing test after test and I was not able to hold her or to comfort her. I can't think of how it could have been worse. Add to that Evan's starting a new (very demanding job) and that we (stupidly) bought a fixer-upper of a house.
I'll never forget the look on the doctor's face when he noticed her unresponsive pupils. This was on the night we were admitted to the NICU after having spent the entire previous day in the emergency room. Evan was with us by then and we were talking to the team of doctors about Iris's condition and their plans for future testing since they still didn't know what was wrong with her. Tensions were high and Dr. Wymore was attempting to cool us down and talk through everything we knew up to that point. The nurses were doing their routine checks on Iris and I made sure that I was facing Iris as our huddle gathered. At one point the nurses called one of the doctors (whose name I can't remember) over to look at Iris. I only glancingly paid attention at this point because I was trying to focus on Dr. Wymore and recount where we had been and what had happened. The doctor who had been called over to look at Iris looked up at this point with a very concerned and almost scared look on his face. He didn't want to interrupt our conversation and Dr. Wymore had her back to him. So I stopped us all and asked him, "What -- what is it?"
He had Dr. Wymore look at Iris's eyes and finally they told us that the pupils were unresponsive to light, meaning that there might be a hemorrhage in her brain and that we had to have an emergency MRI of her brain. Up to this point Evan had been adamant that Iris clearly was just suffering from reflux and was perhaps sick from a bug she caught on the plane ride. After this we were all chastened and my fear skyrocketed. I can't recall entirely, but it seems that they weren't able to get the "emergency" MRI until the next morning. It was already fairly late in the evening by the time all this started. This might have been the worst of the worst.
One might think that getting admitted to the NICU from the ER would have been the worst of the worst. But the doctor who admitted us managed to keep me incredibly calm and kept saying that everything would be fine. So our ambulance ride to the NICU from the ER (which was at a different branch of Children's) seemed not so terrible. I called my mom and told her she was right to have been worried about Iris's breathing from the start. I told the EMT driver that this was going to be the "I told you so" phone call. [Note: My mother is not the "I told you so" type of person, so she did not, in fact say, "I told you so."] It helped, of course, that everyone who works in the ER and NICU has been trained to be incredibly cool during emergent situations. I think I was probably at my best when the doctors or nurses were talking to me about the moment at hand. I was required to focus on the present and think logically. This kept me from stepping back and totally freaking out about where my daughter was and the pain she was probably experiencing.
A second worst-of-the-worst moments was, of course, when they showed us what was wrong with her heart and explained to us that they would have to do emergency heart surgery. There were many worst-of-the-worst moments, now that I think harder about it.
I am ambivalent as I write, though, because 2013 also held some of the best moments of my life. In April I gave birth to a very strong baby girl. I don't know whether Evan and I have ever felt closer than at her birth. And the doctors at Children's Hospital here in Denver gave her a second life and a second birth. We experienced more love and support from our family, friends, and even strangers than I thought possible and Iris has proven to be an immeasurable joy. She is tirelessly happy and loving and shows empathy when I have cried in front of her. She has an insatiable curiosity and is easy to console.
The year ahead holds much promise. Iris becomes more of a handful every day and seems to have boundless energy. Her new favorite activity is to pull herself up in her crib, test her balance, and then let herself fall back on her bottom and then get up and do it again. She starts daycare in March and will benefit tremendously from the socialization and stimulation. Until then I plan to take her to story times at the local library and we are starting a music class with her than I'm sure she'll love. Evan feels increasingly comfortable and valued at work and has made friends out of some coworkers. He now drives to work rather than use public transportation. That was not in our original plans, but it gives him more time at home with us. He has also been able to get back into his jiu-jitsu routine at a local training center. He is spending more time playing guitar for Iris and reminding himself of his love for literature. As for me, I am still working on my dissertation proposal. I have run into problems with my data but am making progress. I still hope to defend the proposal by May. I have gotten into a good gym routine at the gym across the street but hope to get back into running shape this year. I also hope to work on my musicality by picking up the guitar again.
This was a very difficult year. But I end it in a better place than where I started (literally, and figuratively). Perhaps this has been the best New Year's of my life.
Wednesday, January 1, 2014
christmas 2013
Iris loved staring at the lights of the Christmas tree but spent most of her time working on pulling herself up, standing on her own, and banging on the piano. She would occasionally pause while banging to make sure that we were watching her.
She also really loved spending time with her Uncle Miguel. We were having dinner one night and she wouldn't stop staring at him. It helped that he kept making silly faces at her.
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| Iris and Uncle Miguel, #1 |
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| Iris & Uncle Miguel, #2 |
We managed to spend some time outdoors even though we didn't bring any snow gear. Evan and Mike went hiking one day down in White Rock Canyon and then the three of us went out for another little walk the next day.
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| A common Northern New Mexico scene |
Iris couldn't help open presents yet, so mostly she just watched people open things and hand them to her. She tried to help, but that coordination is still lacking.
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| A pile of gifts to open |
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Iris got me a very special Christmas present this year: she suddenly became a great eater. Well, at least a better eater. Apparently cardiac babies are not great eaters. Previously, we all had an impossible time getting her to take more than two bites of any type of food. It was funny to watch how quickly she could close her mouth when she didn't want what was being offered. But now, suddenly, she keeps her mouth gaping open for more food.
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| Peas and brown rice, yum. |
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