July's book club book was The
Happiness Project: Or, Why I Spent a Year Trying to Sing in the
Morning, Cleaning My Closets, Fight Right, Read Aristotle and Generally
Have More Funby Gretchen Rubin. I read it on my iPhone while
pumping. I spend a lot of my day pumping. I was prepared to dislike this
book -- probably because I think [or thought?] that the American
obsession with happiness leads people to be disingenuous and out of
touch with themselves and with those around them. I think my mind has
been changed. I had also been feeling kind of low about various current
events and it's easy to come up with things to complain
about when one has a sick daughter.
So perhaps I've read
this book at the perfect time. [Side note: I'm not sure how to refer to Iris -- she's not exactly sick, since that implies some acute illness. She has some disorders? developmental problems? Not sure how to say it.]
By the end I was convinced of a few
things: 1) it is pretty difficult to be happy and the pursuit of
happiness should generally be applauded; 2) a happy person spreads
happiness to others and spreading happiness is one of the best
contributions an individual can make.
I
leave the book wanting to establish my own "happiness project" but I
have some reservation perhaps best understood from Rubin's observation: "Having a feeling of autonomy, of being able to choose
what happens in your life or how you spend your time, is crucial." I am lacking in this arena, though not entirely.
We have had an unusual week - lots of visits and visitors. It's hard to record all that has happened this week, but I'll start with Wednesday's big milestone - recorded below:
Iris pushing up on her belly
Iris rolling over on her left side to her back
She can roll over now (on both sides)! She's really quite active - sometimes I worry that she's too active. The other very big news of the week: we closed on the house. Evan and I now own a home in Denver. There is a lot of work to be done on it and I am looking forward to having somewhere to deposit my creative energy.
Evan and I had a date night on Friday - we went to Le Central. On the way home we talked about who we would want Iris to go to if anything happened to us. We have some amazing friends and family so we're fortunate to have several ideas. At some point we should get a will written. Our big goal for August is to get into a sustainable routine of exercise for both of us. We have benefited greatly from my mom's month-long visit but I still never managed to work on my dissertation proposal or get into a running routine.
I realize that I haven't written much about Iris's diagnoses and prognoses so that many readers of the blog might not have the full picture of what Iris is dealing with. I'll address that shortly.
This is Iris's new favorite thing to do. Technically, the oxygen is still in the right area, but it's probably not having the intended effect.
I try to stop her as much as possible but it's not clear to me how you discipline a three-month old in this regard. I mostly rely on trying to distract her or by giving her something else to put in her mouth. My mom thinks she is in the early stages of teething and it seems like I've felt the start of some teeth in her gums.
Here are some of her without her oxygen on. It's easy to forget what she looks like without the tube running across her face.
Iris is basically sleeping through the night now, by which I mean from about 8:30pm to about 7am. I still have to get up around 3:30am to give her a dose of Sildenafil but otherwise she'd sleep straight through the night. I also take that time to nurse her but if she doesn't nurse properly then I have to pump, so I am up for about an hour total. Evan and I are both quite pleased with how well she sleeps and naps. She fusses just a little bit right before she falls asleep and it's really out of character for her to cry for extended periods of time. This is a drastic difference from before the surgery and even just after the surgery when I think she was in a lot of pain.
Since my mom is in town Evan and I have been able to do a lot of grown-up things. We went to yoga Thursday night, tennis Friday morning and had a date on Friday night. Unprecedented.
It looks as if we are going to close on a house by the end of July. We have been in negotiations with various housing people since May and we are hopeful that we will own a home in Colorado shortly. The house needs some work so we won't move in right away but we both look forward to finally settling somewhere after having moved so much in the past few years. I think the official count is that we have moved four times in the past three years. Exhausting. But after move number five I hope we don't have to do it again for a long, long time.
I'm feeling much better after meeting with Dr. Sagel [the pediatrician] on Thursday and the Dr. Siomos and Dr. Howley at the Cardiac clinic on Friday. Iris has been breathing very well, though she did have a slightly elevated temperature and seems to be fighting something little. Dr. Sagel reassured us that Iris seems to be doing very well, "She looks like a healthy three-month-old. She's doing great." I think she still looks quite skinny -- and she is actually quite skinny -- but she's putting weight on fairly well.
Dr. Sagel suggested we stop fortifying her milk completely, and suggested that would help with the diarrhea she's had. She seems to have been right. She also said we should stop the Nystatin for thrush and see how Iris can do fighting it off herself. I continue to resist giving Iris the inhaled steroid Flovent but the pulmonary nurse wants to readdress this in the future. I am hopeful that Iris will be able to get by without Flovent as a daily regimen.
I'm sure other parents are all aware of this but the CDC and the WHO use differing growth charts so your child shows up in differing percentiles depending on the chart you're using. Here are Iris's records from the Children's Hospital since arriving.
The WHO [above] has Iris as being almost in the 14th percentile in the weight-for-age chart. Meanwhile, the CDC [below] has her almost in the 30th percentile. Go figure. I guess the percentile doesn't matter that much, but the trend. And her trend is clearly looking good.
We finally got a pulse ox to measure her oxygen levels at home. Getting the pulse ox involved a fairly emotive email to the pulmonary team and changing medical supply companies. We had to pay out of pocket for the oxygen set up but we continue to be under the [perhaps false] impression that we will be reimbursed by COBRA for this expense. After the appointment at the cardiac clinic it appeared she could handle coming down to 3/4L. She's been doing well on 3/4L as the pulse ox shows, which I've been checking more frequently than the doctors wanted me to do. However, in order for us to get to turn down her oxygen they said that I would need a fairly consistent record of her oxygen levels over an extended time...so I'm doing some data collection. She's been between 95-100% consistently. This would suggest we can try her on 1/2L but I'll wait till the afternoon to contact Dr. Siomos.
My mom has accompanied me to all the appointments and Evan has attended via iPhone. Mom has been particularly impressed at all our doctors who happen all to be female and to have children. Dr. Siomos has a 7-month old at home and yet she is always at the hospital. Dr. Howley has a 1-year old.
Iris was having trouble breathing yesterday so my mom and I brought her to the emergency room just after 5pm. I called them on the way to let them know we were coming. I don't know if that helps things move faster but it couldn't have hurt. We've never had to wait the two times we've been in the emergency room but it probably is because she is a cardiac baby.
The short of it is that the steroids seem not to have worked and that it appears she still needs her Lasix to get rid of fluid in her lungs. In other words, she may not have had any inflammation in the first place and all she needed was to up the lasix dose since she's been gaining weight. The question then becomes - why does she still have fluid in her lungs? Unknown.
We got discharged from the emergency room around 11pm, maybe a bit earlier. I started out wanting very much to go home right away but at one point they talked me in to staying over night because she apparantly needed more oxygen [see below]. Evan drove down to meet us and helped re-convince me that there was no need to stay over night.
A big baby milestone was that Iris laughed for us while we were there. She has been laughing in her sleep but not while awake. Waking laughs are a new treat.
Now then, on to the oxygen story. I have become increasingly unimpressed with the medical folks we're dealing with. That's not to say that I am not sympathetic to the very real human aspect of practicing medicine. As a mother, though, it's infuriating when you think you are doing the best thing for your child only to find out that you have not been told the whole story. It's a problem of asymmetrical information combined with inconsistent care from the millions of nurses and doctors who see Iris. I could go on bu I'll get to the point.
When we arrived and were checked in, I confirmed that Iris was on 1/2 L of oxygen as directed by the pulmanology team at our Friday appointment. As far as I knew they left her on 1/2L when we were sent to the room. So imagine my surprise when the fellow came in to relay the message that they were concerned that she needed a full liter of oxygen to keep her sats [saturation levels] up. No one told me they had changed her oxygen flow at any time. The opposite happened at one point. When we took her to do a chest x-ray we put her back on our mobile oxygen tank at 1/2L. If she was on 1L beforehand they should have put her on 1L for the x-ray. They did not. All that time her sats were fine, meaning above 94%.
When I was told of their concern about her needing 1L we got into a long discussion about the chart and when they would have changed her oxygen level and particularly why they would have done it without telling me. Basically, I think it was mischarted and the nurses had a harder time setting her oxygen level on the wall than on our home machine. So they meant to set it to 1/2L but it was accidentally set higher.
Anyway, to avoid beating the dead horse, I later requested that they lower her oxygen when it was clear that 1L was keeping her in the high 90s and even 100, higher than necessary. At 1/2L she dropped to where they wanted her all along, above 94%. (This was after receiving her dose of Lasix, too, so that muddied the waters.)
We all came to an agreement that we could go home and come in for a follow up in a day. She had a previously scheduled appointment with Dr. Sagel today, so we're keeping that and then return to the cardiology clinic Friday a 8:30am.
Today Iris is 3 months old. I typed this all with one hand while she sleeps in my arms.
Evan turned 33 today. We had a very mellow and relaxed day. Mom came over in the afternoon to watch Iris for a couple hours so we could go on a date for Evan's birthday. She is in town for most of July to help out around here. Our parents have been so amazingly helpful in the last few months.
For the date we went to one of my favorite places in Denver -- City, O' City. I think I like it because it is full of the hipsters I emulate. It's also a vegetarian/vegan place that makes incredible food. We had a Mexican/Korean torta (vegan sausage heavy with cloves and topped with kimchi -- not pictured), an egg, tomato, gruyere and arugala sandwich with curried carrot soup (heavy with ginger and thick with cashews) and a side of poutine (just plain heavy).
Evan’s
insurance ended on June 30 and we are now [or will be] on COBRA for July and
August. Penn State’s COBRA is retroactive to start with so we have to wait
until the end of July to ‘officially’ be on COBRA. I called the insurance
company today to figure out which pharmacy actually takes our insurance and was
told that it appears that we are not covered anymore. It will continue to
appear this way until July. We’ve been having a problem with figuring out which
pharmacy takes our insurance. We were told before leaving the hospital that a
local Target would, but that is not the case. Ditto with Walgreen’s. Turns out
that Rite Aid does take our insurance.
We met
with cardiology and pulmonology today in a 5-hour visit to the hospital clinic.
They did an echo, an EKG, and an x-ray. The conclusions: she has very mild
septal flattening while off oxygen so she will stay on the oxygen and continue
the sildenafil. We can take her of the Lasix. Her oxygen saturation levels are
low so she is now up to 1/2 liter instead of a 1/4 liter. The x-ray showed that
she had hyper-inflated lungs so she is starting on steroids to address the
inflammation. She will have 3-5 days of a ‘steroid burst’ and then we will
continue to give her inhaled steroids for 3-6 months. Evan and I are both
unhappy about this, particularly Evan. I am hopeful that we can keep this
shorter rather than longer but it is important to protect her lungs as much as
possible. She gained weight again - averaging 25 grams/day for the 18 days between clinic visits. She is now 4.95 kg (10.9 lbs). We think of her as a normal-sized baby but she is really still quite skinny.
Life is looking increasingly normal. In the last week her vomiting has subsided dramatically and I've felt increasingly comfortable taking her out for social engagements. We had lunch with George [the all-purpose professor] last week and over the weekend Evan and I took her out to dinner after stopping by one of his co-worker's house to see the renovations planned there. We went to the park again on Sunday and she chilled out in her sunglasses. She is beginning to get some new vocalizations - cooing and shrieking (with delight). Both Evan and I are figuring out how to incorporate exercise into our routine. He was able to go to a jiu-jitsu gym on Saturday and plans to go a few more times this week. I only went to yoga once this week but did get in some good runs.
I have recently discovered that Iris's signals for "I'm tired" are nearly identical to "I'm hungry." Having discovered this, I've gotten much better at helping her get sleep during the day. This has really helped alleviate her afternoon fussiness.
I am working on writing the entire story of how we discovered Iris's health issues. It is taking a while.
Today's goals: exercise, address emails...it's a low-goal day. I hope to get a library card this week, though.
