Mama goes to work

First, the singing naked telegram is winning the poll right now. Nice note is losing. Get those votes in!

Second, best news since surgery went well last Monday: Mama's going back to work part-time! Following some negotiations with the executive director, we have agreed to a plan that will have me working a half-time schedule. I'm excited to be putting my feet back in the work pool, as well as to reconnect with a part of my brain that has been on hiatus for nine months, and to have more time with adults! I'm sure it will be hard to be away from the babies at all but I feel very confident that they are in good hands with our neighbor Mindy, who will be watching them all day Monday and a half-day Wednesday. My parents are going to come up Fridays to watch the babies most weeks, and when they can't either Mindy will watch them or Jeff and I may split the day, or we'll find another sitter. Altogether it couldn't have gone a lot better and I'm grateful to be one of the first HLAS employees able to transition to part-time, on my own terms. Hooray! I go back the Monday after Thanksgiving, November 28.

Funny Series of Pictures

Bro, get your hand of my face.

Seriously bro, move your hand or I'll bite it off.

OK, you called my bluff. I can't bite your hand because I don't have any teeth yet, but i will suck on it!

New Poll

I want to do something nice for my awesome endocrinologist who has managed my care so carefully over the last month, who arranged my surgery and talked me down numerous times from a steroid- and hyperthyroid-induced hysteria. She found me pulmonologist #2 and is tapering me off the steroids. She has seen me every week throughout this nightmare, fitting me in to her very busy schedule, and has spent countless hours coordinating my care with both pulmonologists, my primary care physician, and my surgeon. And throughout, she has made me laugh and feel taken care of at the same time. She has also, ever so carefully, suggested on multiple occasions that the care I received at the hospital I first went to was sub-par.

So how do I thank her for everything she's done? Keep in mind that she's semi-offbeat, no kids, and has a foul mouth. She is rough around the edges but sweet. She talked for 10 minutes last visit about how much she loves Halloween, but won't dress up because last time she had the office dress up a nurse dressed up as Snow White and her first patient was a dwarf. Awkward!

Let me know in the poll or in the comments below how I should thank her--I really need your help!

Post-surgery

First things first: I had a total thyroidectomy yesterday and everything went really well. I arrived at the hospital at about 5:15am and was in surgery by 8:00. The afternoon was rough as I came out of the anesthesia and adjusted to the soreness and stiffness in my neck but because I was doing so well (and wanted to get home to the babies) I was discharged around 6:30pm. The surgeon got the whole thing out and everything went perfectly. I really finally feel like the worst is over, and I am on the way up.

My endocrinologist visited me in the hospital and was really happy with how the surgery had gone and how I was recovering. I was glad my mom got to meet her and see what I love about her. She talked a little bit about how scared she had been when I first came in four weeks ago after I had been in the hospital, and that she really did not know what was going to happen to me. But she said I am through the "dark dark forest" and that I am going to be perfectly fine. It's a huge relief.

We have been blessed with lots of delicious meals and food this week, which has been awesome with everyone here. Jeff's mom Kathy left this afternoon and his dad Greg was here yesterday and this morning. My dad was here yesterday and came back again this afternoon after work. Heidi and Meghan brought food Sunday and Monday, and Divya brought another meal for tonight. Everything has been amazing and it has been a huge gift not to have to worry about food. The Women's Bar Association Board has been amazing and I am so grateful to have gotten to know these amazing women. Deb and Renee sent over an Edible Arrangement and Mary and Danielle sent a Wegmans gift card. I can't believe everyone's generosity. The babies have been keeping everyone smiling and laughing. Apparently they were a little stressed out yesterday (possibly reflecting the stress felt by Kathy and Joan waiting at home to hear news about the surgery) but I think they were back to normal today.

I feel uniquely qualified to rate the hospitals where I have been admitted this year, of which there have been four (five hospitalizations, four different hospitals). St. Joe's, where I had the surgery, wins the award for best food. By far. Though they sure were stingy with bringing it at first. I liked that they brought two desserts with every meal. I'm a big fan of that policy. And not some crappy gelatanous ice cream like at Crouse. I got cream puffs and berry jello for dinner dessert at St. Joe's, and rice pudding with real whipped cream with a dusting of cocoa powder for lunch dessert. Not too shabby! And to be fair, when I really bitched about not getting food after I got out of surgery and had nursed once and pumped breastmilk three times since I had last eaten, they did bring me two containers of yogurt and a bunch of milk and juice. After offering me graham crackers and toast. I looked at her like, you idiot, I just had throat surgery and was intubated. My dad actually called her an imbecile. Which wasn't very nice but was true. The lactation nurse who came down from maternity to help me pump when I got out of recovery was awesome, and so I rate the lactation nurses at St. Joe's better than Crouse because no one at Crouse was as helpful or friendly (or attractive, but that shouldn't really figure into the ratings). The room was a tie for the crappiest room I have been in (tied with St. Luke's in NYC). It was bad enough to be in a tiny cubicle twice the size of the hospital bed, in a double room where the woman next to me watched/listened to Fox News all day (seriously I thought I was in hell). But she also had some kind of bladder or urinary problem so the bathroom was a total disaster and reeked of old stale pee all day that was never cleaned up. I thought Jeff was going to boot the first time he went in. So St. Joe's gets serious demerits for lack of cleanliness. The nurse I had when I first got to the post-surgery floor was not very nice and in general they weren't very responsive or friendly or helpful. They seemed very understaffed and busy. I always worry about patients without advocates with them, especially advocates as pushy as Jeff and my parents. I worry that they don't get food, or help to the bathroom, or pain medication. And I'm grateful for my advocates who never left me alone and who got me everything I needed.

So from here on out, things should get better every day. My voice still isn't great so I'm not great on the phone yet, and my neck is still pretty sore and stiff so it's hard to move around a lot and I look a little suspicious because I can't turn my head that much so I just look around shiftily. But I think I'm getting better all the time. I'm going to try to keep resting some each day the rest of the week and then we'll see if I can get some help for next week, when Jeff will be in New York City Tuesday through Thursday. I have a babysitter lined up for Monday afternoon for one doctor appointment and another for Wednesday's doctor appointment, and Lauren's going to help out with at least one other night for the witching hour and putting to bed. Thank you to everyone for the calls, emails, texts, food, and good thoughts sent our way--every little bit has helped and I am so grateful!

Heart Warming Laughter

Today was a beautiful Autumn day in Syracuse. The four of us ran some errands, went for a nice walk, and had some great playtime inside. As you will see, Bryn really gets them laughing.

- Jeff

Sleep update

First night of sleep training:
Asleep at 7pm, no crying, no fussing
Awake at midnight, crying/screaming/fussing for 45 minutes, then asleep
Awake at 4:45am to eat, then back to sleep with no fussing or crying
Awake for the day at 7:15am

Second night of sleep training:
Asleep at 7pm, no crying, no fussing--especially impressive because I did bedtime by myself because Jeff was at a conference in Buffalo
Awake at 3am to eat, then back to sleep with no fussing or crying
Awake for the day at 6:15am

Who knows if it has anything to do with us or what we're doing, or whether they were ready to start sleeping better, or if it will last any length of time. I know that I feel a ton better having slept a good long stretch two nights in a row, and I will take it!

I'm not sure I ever updated on the BF front. When all was said and done for my hospitalization and medical crisis a month ago, the boys had about three days of bottled breastmilk (both mine and that of dear friends), then four days of partial formula, partial donated breastmilk, and then for about three days, back to nursing full-time with a bottle of donated breastmilk in the night before I could feed them myself again. Since about October 3 we've been fully and exclusively breastfeeding again. When I'm in the hospital for the surgery Monday, the boys will get some of my milk I've stored over the last few weeks, and then when someone can make a trip back from the hospital they'll have some fresher stuff. As I understand it there's nothing about the anesthesia or the surgery that should prevent me from nursing throughout the time I'm in the hospital. We'll have to see how I'm feeling to know whether the boys can come visit me while I'm there, but either way I should be home by early Tuesday morning. They'll have lots of family here to care for them while I'm gone, and frozen breastmilk to tide them over. I hope I'll write again some time next week to give an update on the surgery and the recovery! Please wish us well!

It's 3am. Do you know where your children are?

My answer: no. There are some nights I am so tired and disoriented that I don't even know how many children I have, much less where they are. At our most desperate we sometimes bring one or both into our bed, usually at or after 6am, to try to convince them to sleep a little longer (which almost always works), but last night some number of children were in our bed much earlier on in an attempt for everyone to get some sleep. At some point I got up and tried to find Theo to take him back to his crib and couldn't find him anywhere in the bed. It turned out he was never in our bed, or at least not then--he was sleeping soundly in his crib. This is sleep deprivation. At the hospital after they were born I remember feeling like I didn't know how many children I had or where they were or who needed to be fed. After five months it should be better!

Our nights have been pretty bad lately and I don't know why but I also don't care at this point. The "graduated extinction" plan of waiting five minutes before responding to moaning/crying/fussing, then comforting, then leaving, then if it starts up again waiting 10 minutes, etc., adding 5 minutes each time, is OVER. We are going to full "cry it out" (AKA ignore your children once they are in their cribs at night, at least until you just can't stand it) because we have to get some sleep up in here! And so often they do just fall asleep after 15 seconds or a minute or five minutes, but in the meantime we're waiting, tense, for them to start up again and for us to have to keep track of the time and get back up, etc. The American Academy of Pediatrics child care book I have says that you spend all day showing them how much you care about and love them, so a few moments of crying before they go to sleep or to get back to sleep does not send any bad messages about being abandoned, etc. I would never have thought I'd be a cry it out parent but geez Louise, here we are. And for naps. We have GOT to get into a better schedule for naps, for me when I'm here but especially when other people are going to be taking care of the boys. I keep thinking it will be so much better if the boys and the babysitters can know what to expect in terms of how long and when they are going to sleep. So I'm implementing 9-10am and 1-3 pm naps. They almost always sleep from 9-10 but the afternoon nap is sometimes sketchy with when and how long. They are so much happier when they do nap that long, though, so we'll try to get into a better habit. How do people do it with getting out of the house, though? It seems like we will be tethered to home, only venturing out at non-nap times to try to get into the routine of naps in cribs. But the boys always sleep in their carseats, in a stroller, or in a carrier, when it's not nap time! Are we stuck at home forever?

Speaking of sleep, I am contemplating these for sleepover trips in the next few months. A pack and play is fine but we don't have room to bring one pack and play with us, much less two, and we don't have room anywhere we're going to set up two. These were recommended by another twin mom and they're a little pricey but I'm very tempted. Any thoughts on traveling beds?

More bathtime! and nursery addition

Check out these great personalized towels from Liz and Brad!




We printed some pictures of close family and I framed them in these goofy foam frames with foam lettering. The best part is the babies LOVE the photos and laugh and smile as we go through each picture. We're not lucky enough that Theo and Beck can see their grandparents and uncle every day in person, but now they can at least see their pictures! I took a video of Theo checking everyone out but I'm going to see if Jeff can take a better one with me holding Theo so you can see him laughing.

Mama and babies medical updates

My thyroid labs from earlier this were actually really good, and it looks like we may have a small window to have the surgery while I'm stable and within reach of normal. This morning Jeff and I met with the surgeon who will be performing my thyroidectomy. He's a supernice guy with a gentle demeanor and an easy smile. He also does 50-100 thyroid surgeries every year, and is my endocrinologist's go-to guy. He answered all of my questions before I even asked. He's going to have an OB nurse in the recovery room to help me pump after the surgery, and he is going to try to get me back to the babies as soon as possible. At this point the plan is to have the surgery on the morning of Monday, October 24, and be back home Tuesday morning. The surgeon feels confident that the surgery will be relatively straightforward and simple, and I feel very confident and reassured in his care. I'll have more labs done Monday, meet with my endocrinologist Wednesday, and have a pre-admission appointment Thursday. Jeff's mom will come up for Monday and Tuesday, and my mom will be here all week.

The boys also had their 4-month pediatrician visit today. Everyone was pronounced healthy and growing well. Both Beck and Theo are at about the 25th percentile for everything except Beck is at the 50th percentile for weight. I have little confidence in any of the measurements because they seem to vary so much from visit to visit and scale to scale but the boys are obviously growing so who cares. The boys also had three vaccines each and handled them like troupers. It looked like it may have been harder for Grandpa Stu to watch than it was for the boys to get the shots! And he didn't have the benefit of infant Tylenol or nursing afterwards.

We also lucky enough to be blessed with a visit from Kelley, her mama Mary and baby James! What a bruiser! When we got home, the boys had long lingering warm baths and seemed to really enjoy the water.

Sleep Training!

At the suggestion of my friend Yvette, who has twins, I ordered this book about sleep training twins. I'm not about crying it out or anything nuts, I just wanted to restore some sanity to our nights and help the boys sleep better. I read it yesterday during the boys' morning nap (it's a quick read and I'm hyper on steroids) and we implemented it last night. With great success! The basic and simple premise is that it doesn't really matter what sleep training philosophy you have, it's more important that you implement it with consistency. The other main premise is that babies should be put down awake but drowsy, so they get used to putting themselves to sleep rather than nursing to sleep or being rocked to sleep and then ever so carefully being deposited in bed. So what I have chosen to try is a variation of graduated extinction, which means that if there is any fussing (usually in our case it's better called moaning or chirping) you wait five minutes before going in, then go in and calm the baby however (sticking a pacifier in a mouth, rocking, hand on belly, rocking in the crib or out), and then leave when the baby is calm again. If the fussing starts again, you wait 10 minutes before going back in and repeating the calming performance. If it happens again, you wait 15 minutes before going back in. The goal is that at some point the baby falls asleep while waiting for you to come back in. You do the same thing at naps as at nighttime. The tricky thing about the twins is that of course one could wake the other up during the wait time, but the book says that after a few nights there will both be fewer wakeups in general and fewer wakeups of one twin by the other.

The book also has some great information about baby sleep in general, and how much babies should sleep at different ages, and at what times of the day. It surprised me that we were already doing what the book says is ideal for babies of 4-6 months (adjusted--the book is big on taking the babies' gestational age into account), which is one hour nap from 9-10am and then a 1.5-2 hour nap in the early afternoon, like 1-3pm or 2-4pm.

Our nights have been hellish since I got back to the hospital, with us generally feeding both babies at least a few ounces of milk each night sometime before 1am (with milk I have pumped from earlier in the day). I'm always anxious about whether we have enough pumped milk and whether it's really hunger or something else that's waking them up, plus I'm worried that one will wake up the other so we usually rush in there when there's any noise. The stress is because I can't nurse from whenever I take the steroids until 5-6 hours afterwards, so I run to take them after I nurse them before bedtime and then count the minutes until usually around 1am when I can nurse again.

Last night was our first night and I can't say whether we just had a lucky night or whether the book worked its magic but it was a good night. The boys were tired and went to bed with absolutely no fuss whatsoever at about 6:30pm. They both ate well before they went to sleep and I decided that they could go at least six hours without eating, so I would treat any wakeups as non-hunger-related. They slept solidly without a wakeup or peep until about 10pm, when I heard a mere moan from Beck and stuck a pacifier in his mouth and he went back to sleep. Jeff did some baby calming and waiting between fussing periods around midnight but then no one stirred again until about 2am, when Beck ate. Theo didn't wake up to eat until 3:30am, and then they both pretty much slept until 7am. I hope it keeps getting better with fewer and fewer wakeups but I'll take this as a start! I feel better rested than I have in at least a week and probably since I went to the hospital. We'll let you know how it goes!

Medical update

I met with my endocrinologist yesterday, who is gruff and kind of blaming and likes to remind me of how irritable and hyper I am on the steroids. My thyroid is becoming out of control, likely as a result of the CT scan, and I will need to have thyroid surgery relatively quickly. There are additional risks to the surgery now because my thyroid is out of control, but I do not feel that we can wait because the thyroid being out of control can itself be life-threatening. We are going to wait to see what my labs from yesterday are before making a decision about timing, but it is likely I will have surgery in the next week to ten days.

My endocrinologist continues to believe, along with Pulmonologist #2, that Pulmonologist #1 is wrong about the diagnosis (diffuse alveolar hemorrhage), the etiology (allergic reaction to thyroid medication) and the treatment (surge doses of steroids for three months). The endo says that people with diffuse alveolar hemorrhage (bleeding from the lungs) are very, very sick and usually are dying, and that because I have never been sick or even really symptomatic at any point in this process, that I do not fit that bill. She says it is not consistent with a diffuse alveolar hemorrhage to have completely normal labs, including measures of inflammation and pulmonary function. She also says that she has never seen this reaction with my thyroid drug and that she does not believe the drug caused the reaction. She said that she tends to agree with Pulmonologist #2 that I am not allergic to the thyroid drug and that I should in fact go back on it in preparation for surgery to try to bring my thyroid back to a stable level before undergoing general anesthesia. She makes the point that Pulmonologist #2 's suggestion that I go back on the medication means that he is certain that it is not the drug that caused the bleeding, because it it is safer legally for him to recommend I just continue with my existing course of treatment. He would not even need to see me again, because he does not believe I have any pulmonary problems. He would have my endo wean me off the steroids rather quickly after the surgery (after, not before, because the steroids may be having a suppressive effect on my thyroid now, which is therapeutic).

It is very difficult for us to understand how two people could have such diametrically opposed clinical opinions. It is also hard to understand why they can't pick up the phone and speak to one another like normal people in normal professions. Jeff and I would like to watch them duke it out and see how it turns out. My endo said my case is the most troubling of her career because of the two disparate opinions and resulting disparate recommendations for treatment.

At this point I feel I have one reasonably good option, which is to go ahead with the surgery as soon as it is safe to do so, and to take whatever measures (including continuing the steroids and restarting my thyroid medication) necessary to bring down my surgical and anesthesia risks. It is too scary to go into the surgery with no thyroid suppressing drugs, and, most importantly, even if Pulmonologist #1 is right and I am allergic to the thyroid drug, and I was unlucky enough to have another reaction in the short time between now and when I had surgery, the steroids I am on would likely counteract, at least partially, any reaction I might have to the drug.

Generally people don't have surgery to remove the thyroid when they have Graves disease like I do, because most people can do radioactive ablation, which entails taking a radioactive iodine pill which binds to the thyroid gland and kills it. It's not an option for me now because the radioactive iodine I received intravenously for the CT scan is still uptaked in my thyroid and so the pill will not bind, and I probably can't wait the month or two or three it will take for that iodine to get eaten by my thyroid so that I could then do the pill. A pill is super easy and tempting, but the truth is, I wasn't probably going to do the pill even when I could have. I had already been planning to have the surgery after I was done breastfeeding the boys because the idea of the irradiation creeps me out. When you do that, you can't even be around your kids or family for several days, you have to flush the toilet like three times after you use it and use different cups and silverware, and generally speaking, you're freaking radioactive, for several days or weeks. Plus there's a lifetime increase in cancer risk. That is creepy and I'm not down. Look, I'm no fan of general anesthesia or surgery or hospitalization or IVs or any of that, but I get it--my thyroid is the problem, and they're going to physically take it out. That makes sense to me. I will have to be on synthetic thyroid for the rest of my life but, and this is key, it is simply a synthetic version of what one's body normally makes, so there is basically no risk of side effects or allergic reactions or anything else. It's like taking vitamin supplements. Whereas steroids or antibiotics or my current anti-thyroid medication is acting systemically, not mimicking an already present hormone or chemical in my body. That makes sense to me too, and I'm totally cool with that.

The crazy thing is that if Pulmonologist #2 is right, the source of the bleeding was not in my lungs but rather somewhere in my throat or upper respiratory tract from some unknown but unserious cause, and if I had not gone to the hospital that night, it would have resolved itself with no treatment whatsoever and I would be on my happy way right now. NOT going to the hospital would have been the right thing to do. (Or going to a good hospital--but that's another story.) The endo explained it yesterday as how sometimes you get a bloody nose, and you don't know why you have it, but it bleeds a bunch and then goes away and is nothing to worry about. She says that could have happened somewhere in my upper respiratory tract and drained down my throat into my lungs without me knowing and without any serious cause, and the lungs would have absorbed the blood and all would be fine. That seems crazy to me, honestly, but so does getting an allergic reaction to a drug I have taken on and off for 10 years.

It appears now that another test could have been done in the hospital to determine whether I had a pulmonary embolism, which was the impetus behind the CT scan. Obviously, that other test is the one that should have been done. My endo is still mad, at least partly at me, that I agreed to have the CT scan (because of the consequences on my thyroid), but I have to say that in the moment, I was afraid I had a PE and the ER doc said that the CT scan was my only option. He may have been wrong but he was the only doctor I saw at the hospital that night. I thought I was at a serious risk of dying from a PE while I waited for another opinion or test or doctor, and so I elected to have the CT scan. No one at the hospital ever, in three days, discussed any implications for my thyroid with any of the testing or treatment. Lesson learned: I will not go to Community General Hospital again on purpose, for anything. This might have happened somewhere else but I think it was a bad idea to have gone there in the first place.

Bottom line is: I'm on a relatively low dose of betablockers now around the clock to control the symptoms of my hyperthyroid (hot, sweaty, high heart rate), plus the high dose of steroids, plus the antibiotic to prevent some kind of steroid side effect, plus vitamin D because the steroids zap my vitamin D. I will hear back from my endo by the end of the week with my lab results from yesterday, at which point we will make a plan for surgery. Within a week or ten days of when the surgery is scheduled I may begin taking my thyroid medication again to try to bring the thyroid under control to make the surgery safer. More later this week or early next week....

Colder weather and visit with the Grandparents Leibowitz

We had some cold weather there for a few days this past week, though it has been gloriously sunny, which has necessitated some more fall-like clothing for the babies. See those adorable hats Heather knitted for them!


We are back to full-time breastfeeding around here, and everyone is happier for it. The milk production has stepped up to previous levels, so I am able to pump during the day in case they need a bottle between when we put them to bed (successfully 7pm last night) and when I can feed them again (1am). I want to get off these drugs as soon as I can but in the meantime this is working, so I am grateful!

We also had a quick visit yesterday from 3/4 of the Bleisenblog clan and forgot to get pictures! It's like a Bleisenberg museum over here, what with us using all their hand-me-downs!

Goodies from the mothers of multiples sale

They're not really big enough to sit upright in the jogger yet, but with help from some rolled towels they seem to enjoy the ride!

We spent about $60 total at the sale last Friday night and got this awesome jogging stroller (retail $170), another activity mat, two warm fleecy Bundlemes for the carseats this winter, a roll of diaper liners, two baby life jackets, and a changing pad. Gotta love the mothers of multiples sale! Definitely worth the $25 annual membership fee. I also went to a spa night last month with about 50 of the ladies, which was really fun: we rotated to stations for 30 minutes each: facials, yoga, massage, and acupuncture.

Cuties

Last night the babies finally slept for six straight hours at the beginning of the night, for the first time since I went to the hospital. Everyone ended up in bed in the morning and because everyone got a good night's sleep, everyone is happy!



Look at them holding hands on the activity mat!

Our good friend Lauren who is amazing with babies! She also has guts and perseverance, because she has come over on two evenings to eat dinner with me and manage cranky evening babies. Thank you, Lauren!





The babies seem to really enjoy the new glider and ottoman gracing the downstairs playroom! Another great deal from a fellow mom of multiples.


Theo checking out the new setup in the living room.

Onward and upward

Brief update: I'm feeling great and getting used to normal life again. The boys are sleeping NEVER, up about every hour at night and sleeping fitfully if at all during the day, seemingly only in motion. My milk supply is slowly increasing due to lots of time-consuming pumping and near-constant eating, but I still can't nurse between 8pm and 2am, so between those times when they wake up (and they never used to! darn it!) we are feeding them bottles of donated breastmilk and some of mine (from all the pumping). I'm completely exhausted and, apparently, can't sleep in the middle of the night either. I'm hoping that once my milk supply comes in completely the boys can eat more before they go to sleep and go longer before waking up. We're also not sure how the weather has played into their fitful sleeping and whether they are cold at night. More experimentation to come to resolve the sleep situation.

But these scary, medicalized posts are boring me. And keeping me from the true selfish and shameless mission of this blog-cute pictures of our cute babies. We ran errands yesterday, making errands to the dry cleaner, the farm stand, and Wegmans, the first trip where I used a real big cart and did a whole grocery list. I had Theo on my front in the Ergo and Beckett in the cart in his car seat, hooked on to the front like a real mom. There was no place good to put the pizza so Beck got to carry it.

Hyper

I'm lucky the steroids do not give me insomnia, but I have to admit they do make me a little hyped-up. So I get hyped-up starting at about 8:30pm, after I take them, but I seem to have no trouble going to sleep any time afterwards. Which means I have an hour or so to fly around the house doing laundry, folding diapers, putting away dishes, cleaning, sorting the boys' clothes, and whatever else I see that needs to be done. I feel invincible. Last night we watched "Limitless," a movie starring Bradley Cooper. Watching the movie itself felt especially intense on the steroids, and I couldn't help thinking about how similar steroids are, for me, to the fictional NST drug the movie is about. I feel clearer and more focused and certainly feel a lot more intense about everything. I also get warm and sweaty and can be a pain for Jeff to deal with, though, and I haven't quintupled our money in the last week of being on them, so they're clearly not as good.

Friday I saw the second opinion pulmonologist, Dr. Scholarly. I got an appointment with him because my endocrinologist knows him and called on my behalf, when normally the wait is six or seven months (as I heard the receptionist say while I was in the waiting room). He agreed with Dr. Low Expectations on the most important things: that I am basically healthy, that I have no systemic disorders, and that my lungs are back to normal (or even better-than-normal) function. But they disagree on a few things which are giving me pause. Dr. Scholarly says that he has never seen a hemorrhage like this on my thyroid medication, so because of that, he infers that it is not possible. He says I can, and possibly should, resume taking it. He says that if the drug caused the hemorrhage, I would not have returned to normal lung function because it takes longer than a few days for a drug to leave my system. He sees my thyroid as the priority at this point because he believes that whatever caused the hemorrhage is over and will never return, though he has no idea what caused it. It seems his leading theory is that I had a cold or allergies or some kind of trauma that caused a bloody nose or cut on my throat, and that the blood in my lungs did not originate from my lungs but rather pooled there from higher up. If that is true, it would be frightening to imagine I could have pooled that much blood in my lungs when I did not feel sick AT ALL. I reiterated several times that I had been feeling fine, with no major cough or other symptoms, but this remains his theory. He believes whatever benefit the steroids had is over, because my lungs are back to normal function, and that I could stop them now if I had a plan for dealing with the overactive thyroid. He also says that a chest x-ray in a week or two could confirm that my lungs are back to normal and would spare me the radiation that Dr. Low Expectations thinks I should have in the form of a CT scan in four weeks.


Now the question becomes, how to reconcile the opinions of these two doctors. Undoubtedly, Dr. Low Expectations is a cowboy. His recent interest in me as a person or patient seems primarily due to my freak status as recipient of rare complication. But his explanations and approach resonate with me and with Jeff more, and his approach seems the more conservative. It does not make sense to us that I could have had some illness or trauma that caused a massive lung hemorrhage without knowing it. If that is not a reasonable explanation, it is at least possible that the thyroid medication caused the hemorrhage, in which case restarting it would be foolish. I understand that steroids, particularly at the dosage I take, are a serious matter, but the risk of the hemorrhage not healing prior to ending the medication, and possibly recurring, is also grave. I am lucky not to have experienced any of the major side effects, and if I were, I would probably be more excited about the possibility of going off of them. My plan at this moment is to see my endocrinologist in another week and see what she thinks. She has spent a significant amount of time talking to both of the pulmonologists, and I hope she will help steer me in the right direction.

As for the boys, they are great. We had a quiet weekend here with just the four of us, plus a nice visit with Uncle Jon today. Theo has resumed sleeping well again (8 or so hours after he goes down) but Beck is still often unsettled throughout the night. Last night he was up several times before 2am, which is the earliest I can feed him because I take the steroids at 8pm and want to wait 6 hours before nursing again. We almost made a bottle from some of Sarah's milk we still have around, because he was so unsettled. I do not feel like I have the same milk supply as I used to, and I'm not sure exactly why, but it makes me nervous because now there are times I can't feed my babies. I know we have breastmilk and formula and it's not like they're going to go hungry but I wish it weren't this way.

We've just put away most of the 3-6 month clothes and have resupplied with the 6-12 month clothes. It's fun to have them try on new clothes, most of which are supercute. We have one camouflage romper from the Bleisenbergs that Beck wore to bed tonight that I adore--I'll try to get a picture and post it tomorrow.