It's not very apt, but I'm renaming the man formerly known as Dr. Dickhead. His new name is Dr. Low Expectations--because he was so bad over the weekend, and totally improved his demeanor and candor and, well, his news! My life's motto is "low expectations are the key to happiness." In this case, I wish I had not had such low expectations as I did last Friday, when I honestly thought I might die or at least have a horrible life-threatening autoimmune disorder. If he'd told me last Friday that my thyroid was screwed and I would have to get tested every week and have thyroid surgery and be on high doses of steroids for 3 months, I would have thought that was pretty bad. But when you prepare someone for lupus or death, it doesn't sound so bad! Today he was all smiles and laughs and jokes and good news, so now I admit that I respect and appreciate him. He seems to have taken a special interest in me as a freak case of an extremely rare and little-documented side effect of a medication, and I will take it!
The end of the story on the thyroid is that yes, the CT scan did screw my thyroid, but it was probably the only option they had to see what was going on. The most likely scenario at that time was a pulmonary embolism, and the CT scan was the only way to rule that in or out. Now my thyroid may start going out of control but frankly I had already decided to have surgery after I was done breastfeeding. Now I might be able to have it a little sooner, which would be fine too. And then I won't ever have to worry about these anti-thyroid drugs again. Hooray!
Thursday, September 29, 2011
GOOD news
I just got back from my appointment with Dr. Dickhead, whose name really needs to be changed to reflect his new tone. How about Dr. Low Expectations?
The bottom line is that my labs are all in, and there is absolutely no sign of any autoimmune or generalized inflammation problems at all. In fact, I have a lower than normal amount of inflammation in my body. This pretty much conclusively rules out lupus, Waggoner's disease, Goodpastures disease and a bunch of other rheumatoid problems that I was especially worried about. The best guess they have at this point is that the hemorrhage was caused by the thyroid medication I have been on. Mine would be probably the one case in the country in a year caused by this drug. Dr. Low Expectations said he has seen two other cases this year of this (diffuse alveolar hemorrhage), both caused by a single drug (Plavix, in those cases). He said I performed better on my pulmonary function test than he does, and that my lungs are likely back to normal or near it already.
As for the steroids, he says that because this is such a rare occurrence (the hemorrhage), they do not have great data about what dose or length of steroid treatment will solve it, so he wants to make sure they are effectively treating the inflammation and solving the problem. I feel very comfortable with that explanation and ALSO with breastfeeding again, sooner rather than later. Dr. Low Expectations admitted today that he'd done some research and very very little of any of the medications I am on gets into breastmilk, and assumed that I would resume immediately. He answered all of my questions thoughtfully and completely, and Jeff's too. He took seriously my concerns and said "I don't know" fairly frequently, which I always appreciate. No one knows everything, and I'd rather a truthful "I don't know" than BS.
So now my biggest concerns are abnormal hair growth, insomnia, hyperness and irritability, and sweating, all possible side effects of the steroids. I'm sure we'll have some nursing hiccups as we get back in the swing of things after a week of bottles, too. But I don't care about any of that--we'll work through it. Just please don't make fun of my moustache and dampness. Truthfully I've always times when I've been an irritable hyper bitch, so good luck trying to sort that out. And may God help the person who says, "was she ALWAYS that hairy and sweaty, or is it just the steroids?"
I go back to see Dr. Low Expectations in five weeks for a new CT scan and pulmonary function test, at which time I will start weaning off the steroids. In the meantime, I'm watching Theo sleep on my dad and I'm going to nurse him when he wakes up. I can't wait.
The bottom line is that my labs are all in, and there is absolutely no sign of any autoimmune or generalized inflammation problems at all. In fact, I have a lower than normal amount of inflammation in my body. This pretty much conclusively rules out lupus, Waggoner's disease, Goodpastures disease and a bunch of other rheumatoid problems that I was especially worried about. The best guess they have at this point is that the hemorrhage was caused by the thyroid medication I have been on. Mine would be probably the one case in the country in a year caused by this drug. Dr. Low Expectations said he has seen two other cases this year of this (diffuse alveolar hemorrhage), both caused by a single drug (Plavix, in those cases). He said I performed better on my pulmonary function test than he does, and that my lungs are likely back to normal or near it already.
As for the steroids, he says that because this is such a rare occurrence (the hemorrhage), they do not have great data about what dose or length of steroid treatment will solve it, so he wants to make sure they are effectively treating the inflammation and solving the problem. I feel very comfortable with that explanation and ALSO with breastfeeding again, sooner rather than later. Dr. Low Expectations admitted today that he'd done some research and very very little of any of the medications I am on gets into breastmilk, and assumed that I would resume immediately. He answered all of my questions thoughtfully and completely, and Jeff's too. He took seriously my concerns and said "I don't know" fairly frequently, which I always appreciate. No one knows everything, and I'd rather a truthful "I don't know" than BS.
So now my biggest concerns are abnormal hair growth, insomnia, hyperness and irritability, and sweating, all possible side effects of the steroids. I'm sure we'll have some nursing hiccups as we get back in the swing of things after a week of bottles, too. But I don't care about any of that--we'll work through it. Just please don't make fun of my moustache and dampness. Truthfully I've always times when I've been an irritable hyper bitch, so good luck trying to sort that out. And may God help the person who says, "was she ALWAYS that hairy and sweaty, or is it just the steroids?"
I go back to see Dr. Low Expectations in five weeks for a new CT scan and pulmonary function test, at which time I will start weaning off the steroids. In the meantime, I'm watching Theo sleep on my dad and I'm going to nurse him when he wakes up. I can't wait.
Wednesday, September 28, 2011
Wednesday update
I did my pulmonary function test today and performed well on all the tests, which we think means that my lungs are back to normal in terms of their function. I feel like things are moving forward on several fronts but the uncertainty of what caused this, what the impact of the CT scan I received will be on my thyroid in the future, and what my next steps will be, is really weighing on me. There are so many possibilities of what could be going on and it seems overwhelming. Meanwhile I feel mostly fine and enjoy every minute with the boys and with our family, but the stress is really difficult to bear. I had more labs done today and suddenly have an appointment with Dr. Dickhead tomorrow afternoon, scheduled at 4:30 this afternoon, so I am wondering why this appointment has been scheduled when they told me at 3:30 that I would not meet with him for five weeks. The nurse who called said he wanted to give me an opportunity to ask any questions I had. I don't really know what that means but whatever it means, I would like to know what he knows and understand what his plan is for assembling more information and working toward making me healthy. I know that he and my endocrinologist spoke on the telephone for 45 minutes about me earlier today, but of course I have no idea what that conversation entailed. The point is, I don't know much more than I did at the beginning of the day. I feel better physically but I. just. want. to. know. more.
The boys are great and we're lucky we've had so much help with them--my mom has been here all week and Jeff's mom was here today. My dad is coming tomorrow and we may have other company as well. I think we may have a need for dinners for next week and I may also need more childcare during the day if I continue to have appointments for doctors and labs and procedures. If anyone can offer any help in those departments for next week, please let me know. We're taking it day by day but it would be great to know that someone might be available. I promise, the boys are angels and will crack you up!
Again, thanks for the calls and emails, the breastmilk and cookies and formula and everything else. They really do buoy my spirits and remind me that good things can happen when people spend time thinking, praying, and sending good vibes our way.
The boys are great and we're lucky we've had so much help with them--my mom has been here all week and Jeff's mom was here today. My dad is coming tomorrow and we may have other company as well. I think we may have a need for dinners for next week and I may also need more childcare during the day if I continue to have appointments for doctors and labs and procedures. If anyone can offer any help in those departments for next week, please let me know. We're taking it day by day but it would be great to know that someone might be available. I promise, the boys are angels and will crack you up!
Again, thanks for the calls and emails, the breastmilk and cookies and formula and everything else. They really do buoy my spirits and remind me that good things can happen when people spend time thinking, praying, and sending good vibes our way.
Some pictures to document how big and strong our gorgeous boys are getting! The upshot of all of this is that the grandparents have been spending lots of time with the boys, which is awesome for everyone. Theo and Beckett have been troupers throughout and are always full of smiles, laughs, and good spirit.
Tuesday, September 27, 2011
Getting there
Today was, finally, a good day. It started out with a phone call to my endocrinologist to find out my labs yesterday. Everything is fine, which is very reassuring. She also asked me if I wanted to try a colleague of hers who is a pulmonologist. I said yes, and she said, "I thought so--I already put in a call to him." Later she called me with his name and said his office would be getting in touch with me to set up an appointment in the next two weeks, even though it usually takes months to get in with him. I now have an appointment with him Friday to see where we are and where we go from here. She also suggested I try an anti-anxiety medication while I am on the steroids because it makes many people (example: me) hyper and irritable. I feel like if I had not been hyper and irritable before going to the hospital (which made me go, otherwise I would have gone to sleep), while I was in the hospital (where I kept telling everyone that I needed to see an endocrinologist and a lactation consultant), and since I have been home, I would have gotten much worse care than I did. So I think the extra anxiety is working for me right now, and I'm sticking with it.
I have to pick up copies of all my records from the hospital and get a specialized lung function test tomorrow but I think then the new pulmonologist will have all the information he needs. I may decide to go back to Dr. Dickhead from the hospital or I may choose to stay with the new guy, but I think a second opinion is good. Sara, who works at Upstate, confirmed that Dr. Dickhead is a brilliant doctor (never in doubt) but has too many things going on between teaching and various clinics and programs he directs, and also that he is super-arrogant. No kidding. I also do not feel comfortable with not seeing Dr. Dickhead for 6 weeks while I am on a super-high dose of steroids. I'm glad to have the lung test tomorrow and then talk to the doctor Friday. The dose continues to bug me, because everyone from the nurses at the hospital to the pediatrician to my primary care doctor to Dr. Dickhead's own nurse thinks it is a crazy high dose to be taking for three months. The Wegmans pharmacist actually called this morning to say he couldn't get through to Dr. Dickhead and that he continued to be very concerned about the high dose of steroids, so I think it is possible that my dose will be lowered by the new guy.
I also saw my primary care doctor this afternoon, which was great. She examined me and, as always, my heart and lungs sound great--as they did while I was actively hemorrhaging. My oxygen level was also great in the office. She gave the new pulmonologist a good recommendation and helped coordinate the lung function test. It feels good to have her on board, so that she can help oversee everything that's going on. She assured me that I am going to be fine. She also suggested anti-anxiety medication. I was like, I hear ya, lady, but this is working for me! And if you think I'm anxious, you should see my family! Do you think I would have gotten same-day appointments at my endocrinologist and primary care doctor and an appointment for the lung function test if I hadn't sounded crazy on the phone?
Now that I have an appointment set up with the new pulmonologist Friday and an appointment for the lung function test tomorrow, plus an appointment to get my thyroid levels tested next week and an appointment with my endocrinologist the week after next, and a plan to check in with my primary care doctor throughout, I feel much much calmer. I feel like I've done everything I can to get the best people working on this, and I'm overwhelmed with gratitude that I found such great doctors to help guide me through this process.
On that note, does anyone have any ideas for something I could do for these wonderful doctors? I made cookies for my touchy-feely OB at my 6-week post-partum visit, but that doesn't really seem appropriate for these people.
The best news of the day, though, is that our pediatrician has green-lighted resuming breastfeeding with the steroid dose that I am on. I have gotten great information from Adrienne and Claire and had felt comfortable but didn't want to go against the ped's advice. She called some medication/breastfeeding hotline at Strong Memorial Hospital in Rochester and recommended that I take the medication, then pump and dump at 3 and 6 hours or just 6 hours (if it's at night and the babies are still sleeping). I feel comfortable with taking these drugs and continuing to take care of my babies in the best way I can, so now I just have to figure out about whether the remainder of the drugs I received in the hospital are gone before I actually start nursing again. The most important thing is that I am not going to have to wait 3 months to start nursing again, and this hell of bottles and formula and washing bottles and pumping parts seemingly CONSTANTLY is going to abate somewhat, and more importantly, that I can go back to nursing my babies. When they are on bottles I feel like I don't really know what they need when I can't nurse, and that my best technique for just about any fussiness or upset, putting 'em on the boob, isn't available. They use my breasts as pacifiers and food, and without my breasts, they have to choose one or the other--or we do as we struggle to figure out what they want. The other amazing thing about feeding them with bottles, especially as they days have gone by since I have nursed, is that I realize the immense quantity they actually consume. I had no idea!
We have been extremely blessed to get breastmilk donations from dear friends Sara, Sarah and Kelly. It's made the (now temporary!) transition to formula much easier for me, emotionally, to know that our dear friends are making food for the babies. They have adapted super-well to the formula and the bottles (save one odd bottle) and the strangest discovery we made tonight was that it appears they have a more difficult time taking my milk from a bottle. They both fussed and got upset when given a bottle of my milk (we found a random one that had been lost in the freezer). My mom thinks that it's confusing to have my milk in a bottle because it doesn't belong in a bottle, whereas all that other stuff is fine to have in a bottle. I don't know, but it makes me wonder whether all of this breastmilk really tastes much different. Breast milk taste test, anyone? All I know is that mine is way fattier than any we have been donated, which I think indicates how much more fat I have in my diet than my healthier lactating friends.
After I talk to the pediatrician tomorrow I think I will feel fully comfortable with starting to nurse again. I haven't figured out if I will take the steroids at night and do a bottle at night, or whether I will take them in the morning and give bottles during the day. It's probably easier to give one bottle (or possibly none, depending on how long they sleep) at night and set an alarm to pump six hours after I take the medication, rather than dealing with mixing formula and washing bottles during the day while I'm by myself. I haven't had the insomnia that many people experience with steroids, so I hope it won't be a problem to move my dose to the evening and then go to sleep right away. We've decided to wait until I meet the new pulmonologist Friday because I think it's possible my dose is decreased after our meeting and my test results are back, so we'll do bottles in the meantime. But I sincerely hope I will be back to nursing within a week or so.
Thank you, everyone, for the food and the breastmilk and the formula and the calls and emails and all the prayers and thoughts. At difficult times in the last five days I have closed my eyes and thought of all the good vibes coming at us from literally all directions, and I have felt calmer. I feel so lucky to have you all in our lives.
I have to pick up copies of all my records from the hospital and get a specialized lung function test tomorrow but I think then the new pulmonologist will have all the information he needs. I may decide to go back to Dr. Dickhead from the hospital or I may choose to stay with the new guy, but I think a second opinion is good. Sara, who works at Upstate, confirmed that Dr. Dickhead is a brilliant doctor (never in doubt) but has too many things going on between teaching and various clinics and programs he directs, and also that he is super-arrogant. No kidding. I also do not feel comfortable with not seeing Dr. Dickhead for 6 weeks while I am on a super-high dose of steroids. I'm glad to have the lung test tomorrow and then talk to the doctor Friday. The dose continues to bug me, because everyone from the nurses at the hospital to the pediatrician to my primary care doctor to Dr. Dickhead's own nurse thinks it is a crazy high dose to be taking for three months. The Wegmans pharmacist actually called this morning to say he couldn't get through to Dr. Dickhead and that he continued to be very concerned about the high dose of steroids, so I think it is possible that my dose will be lowered by the new guy.
I also saw my primary care doctor this afternoon, which was great. She examined me and, as always, my heart and lungs sound great--as they did while I was actively hemorrhaging. My oxygen level was also great in the office. She gave the new pulmonologist a good recommendation and helped coordinate the lung function test. It feels good to have her on board, so that she can help oversee everything that's going on. She assured me that I am going to be fine. She also suggested anti-anxiety medication. I was like, I hear ya, lady, but this is working for me! And if you think I'm anxious, you should see my family! Do you think I would have gotten same-day appointments at my endocrinologist and primary care doctor and an appointment for the lung function test if I hadn't sounded crazy on the phone?
Now that I have an appointment set up with the new pulmonologist Friday and an appointment for the lung function test tomorrow, plus an appointment to get my thyroid levels tested next week and an appointment with my endocrinologist the week after next, and a plan to check in with my primary care doctor throughout, I feel much much calmer. I feel like I've done everything I can to get the best people working on this, and I'm overwhelmed with gratitude that I found such great doctors to help guide me through this process.
On that note, does anyone have any ideas for something I could do for these wonderful doctors? I made cookies for my touchy-feely OB at my 6-week post-partum visit, but that doesn't really seem appropriate for these people.
The best news of the day, though, is that our pediatrician has green-lighted resuming breastfeeding with the steroid dose that I am on. I have gotten great information from Adrienne and Claire and had felt comfortable but didn't want to go against the ped's advice. She called some medication/breastfeeding hotline at Strong Memorial Hospital in Rochester and recommended that I take the medication, then pump and dump at 3 and 6 hours or just 6 hours (if it's at night and the babies are still sleeping). I feel comfortable with taking these drugs and continuing to take care of my babies in the best way I can, so now I just have to figure out about whether the remainder of the drugs I received in the hospital are gone before I actually start nursing again. The most important thing is that I am not going to have to wait 3 months to start nursing again, and this hell of bottles and formula and washing bottles and pumping parts seemingly CONSTANTLY is going to abate somewhat, and more importantly, that I can go back to nursing my babies. When they are on bottles I feel like I don't really know what they need when I can't nurse, and that my best technique for just about any fussiness or upset, putting 'em on the boob, isn't available. They use my breasts as pacifiers and food, and without my breasts, they have to choose one or the other--or we do as we struggle to figure out what they want. The other amazing thing about feeding them with bottles, especially as they days have gone by since I have nursed, is that I realize the immense quantity they actually consume. I had no idea!
We have been extremely blessed to get breastmilk donations from dear friends Sara, Sarah and Kelly. It's made the (now temporary!) transition to formula much easier for me, emotionally, to know that our dear friends are making food for the babies. They have adapted super-well to the formula and the bottles (save one odd bottle) and the strangest discovery we made tonight was that it appears they have a more difficult time taking my milk from a bottle. They both fussed and got upset when given a bottle of my milk (we found a random one that had been lost in the freezer). My mom thinks that it's confusing to have my milk in a bottle because it doesn't belong in a bottle, whereas all that other stuff is fine to have in a bottle. I don't know, but it makes me wonder whether all of this breastmilk really tastes much different. Breast milk taste test, anyone? All I know is that mine is way fattier than any we have been donated, which I think indicates how much more fat I have in my diet than my healthier lactating friends.
After I talk to the pediatrician tomorrow I think I will feel fully comfortable with starting to nurse again. I haven't figured out if I will take the steroids at night and do a bottle at night, or whether I will take them in the morning and give bottles during the day. It's probably easier to give one bottle (or possibly none, depending on how long they sleep) at night and set an alarm to pump six hours after I take the medication, rather than dealing with mixing formula and washing bottles during the day while I'm by myself. I haven't had the insomnia that many people experience with steroids, so I hope it won't be a problem to move my dose to the evening and then go to sleep right away. We've decided to wait until I meet the new pulmonologist Friday because I think it's possible my dose is decreased after our meeting and my test results are back, so we'll do bottles in the meantime. But I sincerely hope I will be back to nursing within a week or so.
Thank you, everyone, for the food and the breastmilk and the formula and the calls and emails and all the prayers and thoughts. At difficult times in the last five days I have closed my eyes and thought of all the good vibes coming at us from literally all directions, and I have felt calmer. I feel so lucky to have you all in our lives.
Monday, September 26, 2011
and a little bit of good news...
After carefully watching Beck roll over again and again last week, Theo broke out the rolling over Friday, while I was at the hospital. Grandma Joanie was the only one who saw it and he took a few-day break from doing it again but I saw it today and it looks like he definitely has it down. No video yet (Theo, that's what happens when you develop a new skill when Mommy has some other things on her mind!) but nonetheless, we cheer his growth!
Another day
Today was my first full day back from the hospital. I didn't sleep great last night, I think because of the steroids, but the boys slept great and that's what counts. We're so lucky they've taken to bottles and formula so well; I know that doesn't always happen. They are happy and healthy as always and my mom's been taking great care of them today as I have spent time on the phone making appointments and talking to doctors and getting out to appointments. I was able to get in to see my endocrinologist this afternoon who gave me the pretty awful news that the radioactive iodine that was injected into my IV so that they could do the contrast CT scan early Friday morning would have been uptaked directly into my thyroid, which will now be used as fuel for my overactive thyroid to make thyroid hormone out of control. Which is a problem now that I can't take the medication I usually take to control my thyroid, and the permanent solutions are not possible so close to this scary episode--I can't have surgery because of the recent lung bleeding and can't do radioactive iodine treatment because my thyroid is already full of iodine. The only good thing is that the steroids for the lung hemorrhage are the exact same treatment I would get if my thyroid was out of control and couldn't take those medications, to shut off my immune function. So as long as I'm on the steroids, according to the endocrinologist, I'm safe for the thyroid. Ugh. I've learned so much more than I ever would have wanted to know about all of this.
I feel really good about the endocrinologist, though, and her whole staff was awesome and responsive. The doctor gave me a hug at the end. I feel like she's going to get to the bottom of this even if she has to break some legs to get there, and it's great to have her on my side. She is very angry at the pulmonologist and the hospital staff who did not even consider my thyroid condition (Graves disease) when giving me the CT scan and the radioactive iodine. She said she was going to call him and find out what's going on, and keep very on top of my thyroid in the meantime. She said she has never seen or heard of this kind of reaction to the thyroid medication, though she did not rule it out. It was a little stressful getting my blood drawn because my veins have been totally destroyed by so many days in the hospital and all the blood sucked out of me, but the phlebotomist did a great job and was very sweet to me.
I also had a great conversation with our pediatrician this evening. She was very concerned about my health and just kept assuring me that the boys have gotten awesome breastmilk for four months and that formula will be just fine if that's what we decide to do. She's going to call some breastfeeding/medication hotline at Strong in Rochester for me to find out if the alternative steroid (prednisilone) would be better than what has been prescribed to me (prednisone) or at what levels it would be safe in breastmilk. She was just very kind and very caring, and I felt immensely relieved after talking to her. We also had a very funny conversation about the kids' vaccines. I had decided about two weeks ago, after conversations with Claire and Adrienne and other people I really trust, that I was going to vaccinate the kids for everything at our next appointment in October. Now it is especially important to vaccinate the kids because my immune system is compromised, so I mentioned that. The pediatrician and I had previously had a conversation about spacing out the vaccines. She paused and said, "I promised myself I wasn't going to bring that up. You have too many other things on your mind. But, yes, now that you did, that is important." She's great, and I feel grateful to have her on my team.
I'm still undecided on the pulmonologist. I partially hate him because he so disregards my concerns about breastfeeding and questions about risks and alternative treatments. But on the other hand he did, kind of and in an understated way, admit when he discharged me that he had done some research and there are variations among how the steroids are leached into breastmilk and that it might be possible to breastfeed on even a high dose of steroids with some precautions. And I am grateful that he did the brachioscopy with no observed complications and (I hope) correctly diagnosed the problem. My biggest lingering concern is whether the dose of steroids I am on (60mg/day in one morning dose) is too high and for too long a time. When my mom picked up the meds from Wegmans this morning, the pharmacist came out to ask what they were for and why I had to take such a high dose, that he had never seen a dose so high for so long. When I told the endocrinologist that the pulmonologist's plan was to take them for 3 months, her eyebrows shot up and she said she had never heard of such a long dose. And when I called the pulmonologists' own nurse today to ask about scheduling a pulmonary function test that was supposed to be done at the hospital but they didn't have anyone there to do it all weekend, the nurse said, "for six WEEKS??" His own nurse. I also begged her to help me work with him on the breastfeeding issue, and when I told her that he had told me that I had to stop breastfeeding and that formula was the same thing, she paused for a VERY long time and then kind of harumphed and said she would page him right away. She did not get back to me today, though, so I guess my day tomorrow will again be calling around and trying to get people to get back to me. I also have an appointment tomorrow with my primary care doctor, who I am hoping will help me sort through all of this and make sense of the whole picture.
My attitude today is, I need to get healthy. Above all else. The breastfeeding is a distant second priority until I make sure I'm on the right track to be healthy. I'm continuing to pump and dump to keep up my supply but may slow that down a bit to preserve my strength. I lost 10 pounds between Friday in the hospital and today at my endocrinologist, and I think my body's working really hard just to keep it together. Pumping a half gallon of milk a day has to stress my reserves. I just want to try, if I can, to keep the milk machine running in case I am able to restart it up again at some point in the future. For the moment I'm thinking that will be no earlier than a week or so from now, and much more likely several months. I'm just going to take it day by day. I feel better about the people on my team, my endocrinologist and our pediatrician. I also really want to have the pulmonary function test to confirm that my lungs are in better shape now.
We are so lucky to have had Jeff's parents here for the weekend. My mom is staying indefinitely and Jeff's mom is coming up Wednesday. I felt like I was just barely managing everything (taking care of the babies, laundry, diapers, nursing, naps, groceries, meals) before this happened, and now I definitely can't manage it all without a lot of help. Bottle feeding and pumping is exponentially more difficult than just nursing. I DID appreciate nursing when I could do it, but I certainly appreciate it now. I miss it SO MUCH.
I'm overwhelmed with gratitude and appreciation for all the wonderful emails and phone calls I've gotten from so many of you. Thank you so very very much. They mean so much to me. I was so busy today with getting appointments and putting out feelers to my doctors and all of that I didn't get back to almost anyone. I probably won't be for a while. Please know that I appreciate all of it and I'm sorry that I can't be as diligent and responsive as I would like to be. I also appreciate all the offers of help. For now I'm trying to be very cautious about having people in the house around me and the babies, because the steroids so diminish my immune system and it would be very dangerous for me to get sick. So we can't have a lot of people over, as much as I would love the help and the company. We may take people up on offers of food or grocery shopping or other errands as I get more organized and can plan more than a day or two in advance. Thank you for the offers--I will take you up on it when I feel like it's safe.
I feel really good about the endocrinologist, though, and her whole staff was awesome and responsive. The doctor gave me a hug at the end. I feel like she's going to get to the bottom of this even if she has to break some legs to get there, and it's great to have her on my side. She is very angry at the pulmonologist and the hospital staff who did not even consider my thyroid condition (Graves disease) when giving me the CT scan and the radioactive iodine. She said she was going to call him and find out what's going on, and keep very on top of my thyroid in the meantime. She said she has never seen or heard of this kind of reaction to the thyroid medication, though she did not rule it out. It was a little stressful getting my blood drawn because my veins have been totally destroyed by so many days in the hospital and all the blood sucked out of me, but the phlebotomist did a great job and was very sweet to me.
I also had a great conversation with our pediatrician this evening. She was very concerned about my health and just kept assuring me that the boys have gotten awesome breastmilk for four months and that formula will be just fine if that's what we decide to do. She's going to call some breastfeeding/medication hotline at Strong in Rochester for me to find out if the alternative steroid (prednisilone) would be better than what has been prescribed to me (prednisone) or at what levels it would be safe in breastmilk. She was just very kind and very caring, and I felt immensely relieved after talking to her. We also had a very funny conversation about the kids' vaccines. I had decided about two weeks ago, after conversations with Claire and Adrienne and other people I really trust, that I was going to vaccinate the kids for everything at our next appointment in October. Now it is especially important to vaccinate the kids because my immune system is compromised, so I mentioned that. The pediatrician and I had previously had a conversation about spacing out the vaccines. She paused and said, "I promised myself I wasn't going to bring that up. You have too many other things on your mind. But, yes, now that you did, that is important." She's great, and I feel grateful to have her on my team.
I'm still undecided on the pulmonologist. I partially hate him because he so disregards my concerns about breastfeeding and questions about risks and alternative treatments. But on the other hand he did, kind of and in an understated way, admit when he discharged me that he had done some research and there are variations among how the steroids are leached into breastmilk and that it might be possible to breastfeed on even a high dose of steroids with some precautions. And I am grateful that he did the brachioscopy with no observed complications and (I hope) correctly diagnosed the problem. My biggest lingering concern is whether the dose of steroids I am on (60mg/day in one morning dose) is too high and for too long a time. When my mom picked up the meds from Wegmans this morning, the pharmacist came out to ask what they were for and why I had to take such a high dose, that he had never seen a dose so high for so long. When I told the endocrinologist that the pulmonologist's plan was to take them for 3 months, her eyebrows shot up and she said she had never heard of such a long dose. And when I called the pulmonologists' own nurse today to ask about scheduling a pulmonary function test that was supposed to be done at the hospital but they didn't have anyone there to do it all weekend, the nurse said, "for six WEEKS??" His own nurse. I also begged her to help me work with him on the breastfeeding issue, and when I told her that he had told me that I had to stop breastfeeding and that formula was the same thing, she paused for a VERY long time and then kind of harumphed and said she would page him right away. She did not get back to me today, though, so I guess my day tomorrow will again be calling around and trying to get people to get back to me. I also have an appointment tomorrow with my primary care doctor, who I am hoping will help me sort through all of this and make sense of the whole picture.
My attitude today is, I need to get healthy. Above all else. The breastfeeding is a distant second priority until I make sure I'm on the right track to be healthy. I'm continuing to pump and dump to keep up my supply but may slow that down a bit to preserve my strength. I lost 10 pounds between Friday in the hospital and today at my endocrinologist, and I think my body's working really hard just to keep it together. Pumping a half gallon of milk a day has to stress my reserves. I just want to try, if I can, to keep the milk machine running in case I am able to restart it up again at some point in the future. For the moment I'm thinking that will be no earlier than a week or so from now, and much more likely several months. I'm just going to take it day by day. I feel better about the people on my team, my endocrinologist and our pediatrician. I also really want to have the pulmonary function test to confirm that my lungs are in better shape now.
We are so lucky to have had Jeff's parents here for the weekend. My mom is staying indefinitely and Jeff's mom is coming up Wednesday. I felt like I was just barely managing everything (taking care of the babies, laundry, diapers, nursing, naps, groceries, meals) before this happened, and now I definitely can't manage it all without a lot of help. Bottle feeding and pumping is exponentially more difficult than just nursing. I DID appreciate nursing when I could do it, but I certainly appreciate it now. I miss it SO MUCH.
I'm overwhelmed with gratitude and appreciation for all the wonderful emails and phone calls I've gotten from so many of you. Thank you so very very much. They mean so much to me. I was so busy today with getting appointments and putting out feelers to my doctors and all of that I didn't get back to almost anyone. I probably won't be for a while. Please know that I appreciate all of it and I'm sorry that I can't be as diligent and responsive as I would like to be. I also appreciate all the offers of help. For now I'm trying to be very cautious about having people in the house around me and the babies, because the steroids so diminish my immune system and it would be very dangerous for me to get sick. So we can't have a lot of people over, as much as I would love the help and the company. We may take people up on offers of food or grocery shopping or other errands as I get more organized and can plan more than a day or two in advance. Thank you for the offers--I will take you up on it when I feel like it's safe.
Sunday, September 25, 2011
Back home
I do not have time to write a complete description of all that has happened in the last few days, but because so many people have written and called, I want to make sure everyone knows I am home from the hospital. I was discharged this afternoon and have lots of followup appointments this week but they believe my condition has stabilized and that I am on the mend.
Another very hopeful piece of new information is that I may be able to breastfeed. The pulmonologist is very good, I think, at his specialty, and I believe he will help me figure out what caused the hemorrhage and make sure it is successfully treated. However, he is used to dealing with very sick patients whose inability to breastfeed is the least of their problems, so I think he may have jumped to the conclusion that I couldn't breastfeed without actually doing any research about it. I did some research on my own and have the best medical brains I know (Claire, Adrienne, Sara, etc.) thinking on it and researching, etc. It may be possible that there is an alternate drug that might leach into breastmilk even less than the prednisone that would be equally effective for me, and there may be precautions I can take, like pumping and dumping sometime after taking the steroids and avoiding breastfeeding for some period every day. We will see. And thanks to Sarah I have some extra breastmilk that will reduce the amount of time they will be on formula.
I am humbled by the calls, emails, notes, banana bread, breastmilk, and hands on support from everyone. I wouldn't be able to do this without Kate's pump, Sarah's milk, Adrienne's expertise, my parents' and Jeff's parents' dropping everything and coming to be with us, Kelly's offer of dinner and diaper laundry, and knowing that so many people are out there wishing us the best during this very very tough time. I truly believe that the prayers, thoughts, and well wishes make a difference for all of us, however far away, and I appreciate them so very much. Thank you.
Another very hopeful piece of new information is that I may be able to breastfeed. The pulmonologist is very good, I think, at his specialty, and I believe he will help me figure out what caused the hemorrhage and make sure it is successfully treated. However, he is used to dealing with very sick patients whose inability to breastfeed is the least of their problems, so I think he may have jumped to the conclusion that I couldn't breastfeed without actually doing any research about it. I did some research on my own and have the best medical brains I know (Claire, Adrienne, Sara, etc.) thinking on it and researching, etc. It may be possible that there is an alternate drug that might leach into breastmilk even less than the prednisone that would be equally effective for me, and there may be precautions I can take, like pumping and dumping sometime after taking the steroids and avoiding breastfeeding for some period every day. We will see. And thanks to Sarah I have some extra breastmilk that will reduce the amount of time they will be on formula.
I am humbled by the calls, emails, notes, banana bread, breastmilk, and hands on support from everyone. I wouldn't be able to do this without Kate's pump, Sarah's milk, Adrienne's expertise, my parents' and Jeff's parents' dropping everything and coming to be with us, Kelly's offer of dinner and diaper laundry, and knowing that so many people are out there wishing us the best during this very very tough time. I truly believe that the prayers, thoughts, and well wishes make a difference for all of us, however far away, and I appreciate them so very much. Thank you.
Saturday, September 24, 2011
Worst blog post ever-we hope!
So I am back in the hospital, this time without my beautiful babies. Thursday night I started coughing a bit and tasted blood in my mouth.I got up and went to the bathroom, where I coughed up blood. That has never happened to me and it's pretty scary, so I called my doctor. I spoke to a nurse practitioner who told me it was common but that if I became short of breath or had chest pain to call again. I laid down and felt tightness in my chest and took my pulse and it was 92. I called again and she said to go to the ER. Because Jeff had to stay with the babies, I went by myself. I thought I would have a chest x-ray and be cleared in time to do the 3-4am feeding with the boys. Once there, I had an EKG (completely normal) and chest x-ray (completely normal). They did complete blood work that was normal. Then the Dr suggested a CT scan (aka cat scan) because he suspected a pulmonary embolism (blood clot in my lung). I debated whether to have a CT scan or a VQ scan, which would have entailed breathing radioactive air rather than having radioactive material injected into my bloodstream, but I was told that the CT scan would be more conclusive and accurate, so I went with that. I felt like a very big girl having an IV and doing this scary test all by myself, but I did talk to Jeff several times and this seemed like the right thing to do. After the scan I was told by my doctor that everything looked normal and that I would be discharged shortly.
An hour later he came back and said that he had just received the radiologist's report and that i had what was described as fluffy alveoli, which indicated blood in my lungs. Later the hospitalist said that he had only ever seen two more extreme cases of pulmonary hemorrhage in his 30+ year career. But what was weird was that I had absolutely no other apparent problems except an elevated heart rate, so they did not know what was wrong with me. During the wee hours of the morning lots of scary phrases were uttered- congestive heart failure, you may die if you go home. I spent several hours in semi-darkness feeling very alone and very scared, and slept not a wink. Luckily I had frozen breast milk at home so Jeff managed the nighttime feeding. At 5:30 am I called my parents, who came up, and my dad went to the house to be with the babies and my mom and Jeff came up to be with me. I was very very frightened and missed Theo and Beckett terribly. Eventually Friday morning we found out that this condition is sometimes, very rarely, caused by the medication I take for my thyroid. I was hugely relieved because if this was the cause, a) if I stopped taking it, I was told that the condition would clear up, and 2) because there are alternative medications I can take instead until I can permanently resolve the problem with surgery or radioactive iodine treatment.
Unfortunately, we learned from the pulmomologist I saw later that the pulmonary hemorrhage still needs to be treated, after its cause is conclusively identified. I had another round of blood tests for all sorts of things, including autoimmune diseases like lupus, and was then encouraged to have a brachioscopy, a procedure which the pulmomologist liked to describe frequently and in detail, including phrases such as "shoved down your throat," "completely awake," "scraping chunks of lung tissue," and "complications include collapsed lung, massive internal hemorrhage, and death." In the end it made sense to get it so that we could determine the appropriate course of treatment, but the pulmonologist had already said that I was done breastfeeding because any of the treatments would include medication that would be passed through breast milk and be dangerous to the babies.
I think I cried for 20 of the 24 hours Friday. There were several times during the day when I literally thought I was going to die, and many, many others when I wondered whether my previously happy life was over. I was completely wracked with sadness for missing seeing the boys and wondering if they missed me, and mourning, bitterly and painfully, the loss of our breastfeeding, for their health and our relationship and for me for the closeness and bliss of nursing. I thought about walking out of the hospital and living in denial about the hemorrhage, and I thought about going to another doctor for a second opinion. In the end I called my primary care doctor, who said that this pulmonologist was phenomenal and that if he said to do something, he was probably right. I decided that doing the test was the only way to determine the appropriate treatment, so I decided to do it. Jeff and I ended up having a couple of hours to ourselves when I told him how I would like the boys to know me and that I wanted him to be happy and that he could raise them by himself and that they would be loving, funny, wonderful boys.
The brachioscopy turned out to be a non-event. It was weird, for sure, and the nurses and doctor insisted before the procedure that I would become sleepy and then not remember a thing but i was completely awake for the whole thing and remember clearly the conversations I had with everyone immediately following it. The diagnosis was clear: I have diffuse alveolar vasculitis. The only treatment is three days of mega doses of IV steroids followed by months of prednazone, a still-powerful steroid but one I can take at home in the form of a pill. Steroids in breast milk cause growth retardation in children so continuing to nurse is not an option. The length of course of treatment is dependent upon the cause of the disorder, which we may not know for several weeks as we await the results of blood tests. I am praying that it is not able to be determined by the tests performed, because that will mean that it is almost certainly a result of the thyroid medication and not some underlying medical issue. It also means the course of steroids could be significantly shorter, possibly as short as three months.
After being inconsolably and unendingly desolate all day and evening, I slept last night. I will go back to sleep after finishing this post. My friend Claire, a wonderful doctor, suggested that I take this time at the hospital to to rest, recuperate, and take time for myself, so that I come back to my boys rejuvenated and full of joy. What I will miss with nursing is sad, but i am beginning to realize that my ability to mother them with love and joy and passion extends beyond my ability to breastfeed them. I have decided to continue to pump breast milk (and dump it) with the goal of continuing my supply so that I can resume breastfeeding when the steroids are out of my system. In the meantime I only have a few days' worth of milk in the freezer, though I am proud that I was able to pump a bunch in the hospital early Friday morning while I was waiting for the CT scan. I deeply hope that even if I only pump four or five times a day, once I resume my supply will increase in response to the boys' demand (though that may be lower if they are eating some calories from solids at that point, which would probably be good) and the boys will remember how to nurse and we can continue for as long as any of us want to. My fantasy is that we'll still end up being able to do a year total, just with three months' hiatus in between. I know that's probably ridiculously optimistic but all I can do is try.
The boys were able to come visit me in the hospital this afternoon. It was wonderful and a huge relief to see them, but the visit was very tough because I so wanted to nurse them and they must have wanted to nurse but we couldn't. I also had a tough time physically managing them because of all the monitors I'm hooked up to and the IV line, plus how exhausted and emotionally wrought I felt. Beckett had a very difficult time, crying and fussing almost the whole time, which is very unlike him and broke my heart, but Theo took a bottle of breast milk from me, which made my day. I miss them so intensely it is like a pressure on my heart constantly, but I have come to accept that they need a healthy mama, so I need to get better here even if that means spending less time with them now so I can come back healthy. I am sure I will have moments of despair again in this process. But for right now, I am resolute and confident that I am doing the best thing I can for my little family, and I am desperately looking forward to being back home with them.
I decided to write now because I could really use the support of our friends and family through this very difficult time. Since I cannot write to everyone individually, I decided to post. We will also most certainly need help in the coming days and weeks as we adjust to this new realit
An hour later he came back and said that he had just received the radiologist's report and that i had what was described as fluffy alveoli, which indicated blood in my lungs. Later the hospitalist said that he had only ever seen two more extreme cases of pulmonary hemorrhage in his 30+ year career. But what was weird was that I had absolutely no other apparent problems except an elevated heart rate, so they did not know what was wrong with me. During the wee hours of the morning lots of scary phrases were uttered- congestive heart failure, you may die if you go home. I spent several hours in semi-darkness feeling very alone and very scared, and slept not a wink. Luckily I had frozen breast milk at home so Jeff managed the nighttime feeding. At 5:30 am I called my parents, who came up, and my dad went to the house to be with the babies and my mom and Jeff came up to be with me. I was very very frightened and missed Theo and Beckett terribly. Eventually Friday morning we found out that this condition is sometimes, very rarely, caused by the medication I take for my thyroid. I was hugely relieved because if this was the cause, a) if I stopped taking it, I was told that the condition would clear up, and 2) because there are alternative medications I can take instead until I can permanently resolve the problem with surgery or radioactive iodine treatment.
Unfortunately, we learned from the pulmomologist I saw later that the pulmonary hemorrhage still needs to be treated, after its cause is conclusively identified. I had another round of blood tests for all sorts of things, including autoimmune diseases like lupus, and was then encouraged to have a brachioscopy, a procedure which the pulmomologist liked to describe frequently and in detail, including phrases such as "shoved down your throat," "completely awake," "scraping chunks of lung tissue," and "complications include collapsed lung, massive internal hemorrhage, and death." In the end it made sense to get it so that we could determine the appropriate course of treatment, but the pulmonologist had already said that I was done breastfeeding because any of the treatments would include medication that would be passed through breast milk and be dangerous to the babies.
I think I cried for 20 of the 24 hours Friday. There were several times during the day when I literally thought I was going to die, and many, many others when I wondered whether my previously happy life was over. I was completely wracked with sadness for missing seeing the boys and wondering if they missed me, and mourning, bitterly and painfully, the loss of our breastfeeding, for their health and our relationship and for me for the closeness and bliss of nursing. I thought about walking out of the hospital and living in denial about the hemorrhage, and I thought about going to another doctor for a second opinion. In the end I called my primary care doctor, who said that this pulmonologist was phenomenal and that if he said to do something, he was probably right. I decided that doing the test was the only way to determine the appropriate treatment, so I decided to do it. Jeff and I ended up having a couple of hours to ourselves when I told him how I would like the boys to know me and that I wanted him to be happy and that he could raise them by himself and that they would be loving, funny, wonderful boys.
The brachioscopy turned out to be a non-event. It was weird, for sure, and the nurses and doctor insisted before the procedure that I would become sleepy and then not remember a thing but i was completely awake for the whole thing and remember clearly the conversations I had with everyone immediately following it. The diagnosis was clear: I have diffuse alveolar vasculitis. The only treatment is three days of mega doses of IV steroids followed by months of prednazone, a still-powerful steroid but one I can take at home in the form of a pill. Steroids in breast milk cause growth retardation in children so continuing to nurse is not an option. The length of course of treatment is dependent upon the cause of the disorder, which we may not know for several weeks as we await the results of blood tests. I am praying that it is not able to be determined by the tests performed, because that will mean that it is almost certainly a result of the thyroid medication and not some underlying medical issue. It also means the course of steroids could be significantly shorter, possibly as short as three months.
After being inconsolably and unendingly desolate all day and evening, I slept last night. I will go back to sleep after finishing this post. My friend Claire, a wonderful doctor, suggested that I take this time at the hospital to to rest, recuperate, and take time for myself, so that I come back to my boys rejuvenated and full of joy. What I will miss with nursing is sad, but i am beginning to realize that my ability to mother them with love and joy and passion extends beyond my ability to breastfeed them. I have decided to continue to pump breast milk (and dump it) with the goal of continuing my supply so that I can resume breastfeeding when the steroids are out of my system. In the meantime I only have a few days' worth of milk in the freezer, though I am proud that I was able to pump a bunch in the hospital early Friday morning while I was waiting for the CT scan. I deeply hope that even if I only pump four or five times a day, once I resume my supply will increase in response to the boys' demand (though that may be lower if they are eating some calories from solids at that point, which would probably be good) and the boys will remember how to nurse and we can continue for as long as any of us want to. My fantasy is that we'll still end up being able to do a year total, just with three months' hiatus in between. I know that's probably ridiculously optimistic but all I can do is try.
The boys were able to come visit me in the hospital this afternoon. It was wonderful and a huge relief to see them, but the visit was very tough because I so wanted to nurse them and they must have wanted to nurse but we couldn't. I also had a tough time physically managing them because of all the monitors I'm hooked up to and the IV line, plus how exhausted and emotionally wrought I felt. Beckett had a very difficult time, crying and fussing almost the whole time, which is very unlike him and broke my heart, but Theo took a bottle of breast milk from me, which made my day. I miss them so intensely it is like a pressure on my heart constantly, but I have come to accept that they need a healthy mama, so I need to get better here even if that means spending less time with them now so I can come back healthy. I am sure I will have moments of despair again in this process. But for right now, I am resolute and confident that I am doing the best thing I can for my little family, and I am desperately looking forward to being back home with them.
I decided to write now because I could really use the support of our friends and family through this very difficult time. Since I cannot write to everyone individually, I decided to post. We will also most certainly need help in the coming days and weeks as we adjust to this new realit
Wednesday, September 21, 2011
Tuesday, September 20, 2011
Beck Figured Out How to Roll Over!
Jeff says he read that half of all babies can roll over at 4 months. Well, half of our babies can roll over at four months. (Theo, you have two more days.) I discovered Beck could roll over when I put him on his belly and went in the other room with Theo to change his diaper. When I came back in the room, Beck was on his back. I was puzzled. So I put him on his belly again and within 10 seconds, he was on his back. After I cheered and clapped and everything I realized I should document this "first" with my camera, and, on demand, he did it again!
Statshot: What Are We Neglecting?
61%--the cats
19%--house cleaning
16%--our marriage
4%--changing the babies' outfits after they have spit up on them
19%--house cleaning
16%--our marriage
4%--changing the babies' outfits after they have spit up on them
Monday, September 19, 2011
More friends!
We had a great dinner with Linda, Jess, Todd, Emma and Sophie Saturday night. Three desserts for seven adults is always a good ratio, in my opinion. The babies were in good moods and we had a good time passing them around.
Visit with friends in Ithaca
Wednesday, September 14, 2011
Differences: Four months
I keep meaning to post these and then forget. Then I don't bother because I figure it will always be like this. But maybe not, and then it would be fun to remember what it used to be like. So here goes....
Theo is very interested in talking. He makes a lot of eye contact while being held up at eye level, and his face is very expressive. He makes "ah-goo" and "gu-gu-gu" and "goo-bee" noises while smiling and laughing, and often appears trying very, very hard to say more. His whole face scrunches up and struggles to say what he is thinking. Beckett makes "hi" and "ah-goo" noises and then smiles broadly. Theo will often make eye contact for a very long continuous period, whereas Beckett often catches your eye, smiles a huge (Bryn) smile, and then looks away as if being shy.
Both babies are very stable on their feet and can hold their own weight when helped to balance while standing. Beck often throws his head back while standing, without looking at whomever is holding him. Beck reliably reaches up to grab the rings on the activity mat, but Theo often just watches Beckett grabbing for rings, rather than grabbing for them himself, when they are together on the mat. Beck doesn't mind hanging out on the bed or the floor while I am getting dressed or folding laundry or diapers, but Theo more often gets grumpy when left alone without anything to do. Both LOVE ceiling fans and especially love the one at my parents' cottage, where they can watch it for literally hours.
For a while Theo was spitting up a lot after feedings while Beck just produced monster trucker burps that were dry, but now both seem to spit up a small amount after about half of their feedings. They also both hold on to spit up for a long time after feedings, sometimes spitting up curdled chunks of breastmilk just before eating again.
And, I think that's about it. That's our babies!
Theo is very interested in talking. He makes a lot of eye contact while being held up at eye level, and his face is very expressive. He makes "ah-goo" and "gu-gu-gu" and "goo-bee" noises while smiling and laughing, and often appears trying very, very hard to say more. His whole face scrunches up and struggles to say what he is thinking. Beckett makes "hi" and "ah-goo" noises and then smiles broadly. Theo will often make eye contact for a very long continuous period, whereas Beckett often catches your eye, smiles a huge (Bryn) smile, and then looks away as if being shy.
Both babies are very stable on their feet and can hold their own weight when helped to balance while standing. Beck often throws his head back while standing, without looking at whomever is holding him. Beck reliably reaches up to grab the rings on the activity mat, but Theo often just watches Beckett grabbing for rings, rather than grabbing for them himself, when they are together on the mat. Beck doesn't mind hanging out on the bed or the floor while I am getting dressed or folding laundry or diapers, but Theo more often gets grumpy when left alone without anything to do. Both LOVE ceiling fans and especially love the one at my parents' cottage, where they can watch it for literally hours.
For a while Theo was spitting up a lot after feedings while Beck just produced monster trucker burps that were dry, but now both seem to spit up a small amount after about half of their feedings. They also both hold on to spit up for a long time after feedings, sometimes spitting up curdled chunks of breastmilk just before eating again.
And, I think that's about it. That's our babies!
Visit with Deb, Rich, Emily and Kelsey
Jeff's Aunt Deb and Uncle Rich and their daughters Emily and Kelsey came to visit Saturday. We had lovely weather so everyone except me was able to take a nice walk around the neighborhood. I was able to take a nice nap and watch the last seven or eight games of the Federer-Djokovic US Open Semifinal, for which I was grateful. Thanks for coming, guys!
Kelsey and Emily with Beckett.
The whole fam damily on the way out for a walk around the neighborhood.
Outtake!
Kelsey and Emily with Theo.
Kelsey and Emily with Beckett.
The whole fam damily on the way out for a walk around the neighborhood.
Outtake!
Kelsey and Emily with Theo.
Friday, September 9, 2011
A day in the life
I have been debating writing this post for a while, but I delayed it because I kept thinking, we don't have a schedule YET.... Well, just when I think that we are in a routine, it changes. Parents of older children tell me this is normal, and that it will continue for a very long time. So this is basically what we're doing these days:
The boys wake up sometime between 6 and 7am. They wake up later if it is darker out, so days when it's rainy or cloudy they sometimes sleep as late as 7:45. They eat and then play on the activity mat or do tummy time for 30-45 minutes. Sometimes I try to take a shower or eat breakfast downstairs and so Jeff sits with them or brings them on our bed to watch him get ready for work. When they get tired of the activity mat in the nursery, we get on our bed and we do baths, one at a time, every other day. We usually read a few books (favorites are Where the Wild Things Are and Llama Llama Red Pajama), which means I lay down next to them and put the book up above us. They love looking at the pictures in the picture books, so I usually linger at least a minute on each page so they can scour the entire page before I move on. After a few books they are usually ready for a nap, and they sleep for 30-60 minutes. That's when I put a load of laundry in the washer or stuff some cloth diapers with the inserts, or I eat breakfast or take a shower. They wake up from their naps and we read or try out the Bumbo seats or do some twin time--where I put them close to each other so they can coo and giggle and smile at each other. Tuesday mornings we usually go to the Downtown Farmers' Market, where I either put one of them in the front carrier and use the empty double stroller spot for veggies and fruit, or I put them both in the double stroller and have them "help" by loading up stuff on top of them in the carseats. Sometimes they take a nap between 11:30-12, which sometimes lasts as long as two hours. In the afternoon we often go for a walk in the neighborhood, either alone or with another family. They usually take another nap mid-afternoon. When Jeff gets home I breathe a sigh of relief to have a better baby-adult ratio, and we each take turns with each baby. They usually eat every 2-3 hours during the day and evening. Lately they have been taking an evening nap for an hour or two, which allows us to prepare and eat dinner like childless people. Sometimes one of them doesn't really wake up after the evening nap, and so I sleep-feed him, we dress him in the nighttime diaper, and then put him down without another alert period first. They usually wake up once in the night, and if we are lucky I can get into the nursery while only one is awake; otherwise Jeff has to come in and calm the other one while I finish feeding the first. We are usually lucky enough that they fall asleep again while eating, so I do a perfunctory burp and put them back down with little ado. I'm generally getting two chunks of 3-4 hours of sleep in the night, which I think is pretty good. I would like to move toward a more reliable nap schedule where they are both asleep for a chunk of time in the morning and the afternoon, but I am torn because it's also really nice when they sleep at different times and I have alone time with both.
They are very happy babies, generally, and spend much of their days smiling and giggling. Beck especially is starting to grasp things put in front of him. He stares very intently at the object and swings his hands closer and closer until he wraps his fingers around it. Theo is still happy most of the time to watch things brought close to him without trying to grasp them. Theo gurgles and coos with more inflection than Beck does, staring at us with intensity as if he is really trying to tell us something. Theo looks more frustrated with his inability to communicate effectively with us. Both of them can fully support their own weight standing, and sometimes can stand unaided for a few seconds. While Theo reliably poops every day, Beck often goes 3-4 days between giant blowouts. So far the cloth diapers have contained all but the most explosive and infrequent poops. They smile at strangers and seem to enjoy their life so far!
The boys wake up sometime between 6 and 7am. They wake up later if it is darker out, so days when it's rainy or cloudy they sometimes sleep as late as 7:45. They eat and then play on the activity mat or do tummy time for 30-45 minutes. Sometimes I try to take a shower or eat breakfast downstairs and so Jeff sits with them or brings them on our bed to watch him get ready for work. When they get tired of the activity mat in the nursery, we get on our bed and we do baths, one at a time, every other day. We usually read a few books (favorites are Where the Wild Things Are and Llama Llama Red Pajama), which means I lay down next to them and put the book up above us. They love looking at the pictures in the picture books, so I usually linger at least a minute on each page so they can scour the entire page before I move on. After a few books they are usually ready for a nap, and they sleep for 30-60 minutes. That's when I put a load of laundry in the washer or stuff some cloth diapers with the inserts, or I eat breakfast or take a shower. They wake up from their naps and we read or try out the Bumbo seats or do some twin time--where I put them close to each other so they can coo and giggle and smile at each other. Tuesday mornings we usually go to the Downtown Farmers' Market, where I either put one of them in the front carrier and use the empty double stroller spot for veggies and fruit, or I put them both in the double stroller and have them "help" by loading up stuff on top of them in the carseats. Sometimes they take a nap between 11:30-12, which sometimes lasts as long as two hours. In the afternoon we often go for a walk in the neighborhood, either alone or with another family. They usually take another nap mid-afternoon. When Jeff gets home I breathe a sigh of relief to have a better baby-adult ratio, and we each take turns with each baby. They usually eat every 2-3 hours during the day and evening. Lately they have been taking an evening nap for an hour or two, which allows us to prepare and eat dinner like childless people. Sometimes one of them doesn't really wake up after the evening nap, and so I sleep-feed him, we dress him in the nighttime diaper, and then put him down without another alert period first. They usually wake up once in the night, and if we are lucky I can get into the nursery while only one is awake; otherwise Jeff has to come in and calm the other one while I finish feeding the first. We are usually lucky enough that they fall asleep again while eating, so I do a perfunctory burp and put them back down with little ado. I'm generally getting two chunks of 3-4 hours of sleep in the night, which I think is pretty good. I would like to move toward a more reliable nap schedule where they are both asleep for a chunk of time in the morning and the afternoon, but I am torn because it's also really nice when they sleep at different times and I have alone time with both.
They are very happy babies, generally, and spend much of their days smiling and giggling. Beck especially is starting to grasp things put in front of him. He stares very intently at the object and swings his hands closer and closer until he wraps his fingers around it. Theo is still happy most of the time to watch things brought close to him without trying to grasp them. Theo gurgles and coos with more inflection than Beck does, staring at us with intensity as if he is really trying to tell us something. Theo looks more frustrated with his inability to communicate effectively with us. Both of them can fully support their own weight standing, and sometimes can stand unaided for a few seconds. While Theo reliably poops every day, Beck often goes 3-4 days between giant blowouts. So far the cloth diapers have contained all but the most explosive and infrequent poops. They smile at strangers and seem to enjoy their life so far!
Wednesday, September 7, 2011
Tuesday, September 6, 2011
Vaccine clarification
A couple points I should have mentioned, which factor into my decision about vaccinations:
1) All infant and child vaccines are now available without thimerosol, the preservative put into many adult vaccines so they last longer without refrigeration which contains mercury. I find it absolutely insane that companies are allowed to put mercury into drugs that are intended to be injected straight into a person's muscle, and so I have refused any shots not made without thimerosol. I have been getting thimerosol-free flu shots for many years. If they don't just give it to me without making a big deal about it, I come back a different day and tell them I am pregnant, because for some reason they recognize that pregnant women should not get mercury vaccines, but think it's perfectly fine for non-pregnant people. I have been claiming pregnancy for many years for vaccine purposes. Non-mercury vaccines are non-negotiable to me, both for me and my children.
2) My kids are not in daycare and will not be for the foreseeable future. If Theo and Beck were going to go to daycare in the immediate future, I would probably reconsider whether they should get the pneumococcal and/or the rotavirus, because they would be exposed to lots of germs because of being around more kids and adults. I cannot imagine any scenario in which they would be in a care situation with other children or many other adults, so I have not factored this into my decision. They will certainly be around other children, but not on a daily basis.
1) All infant and child vaccines are now available without thimerosol, the preservative put into many adult vaccines so they last longer without refrigeration which contains mercury. I find it absolutely insane that companies are allowed to put mercury into drugs that are intended to be injected straight into a person's muscle, and so I have refused any shots not made without thimerosol. I have been getting thimerosol-free flu shots for many years. If they don't just give it to me without making a big deal about it, I come back a different day and tell them I am pregnant, because for some reason they recognize that pregnant women should not get mercury vaccines, but think it's perfectly fine for non-pregnant people. I have been claiming pregnancy for many years for vaccine purposes. Non-mercury vaccines are non-negotiable to me, both for me and my children.
2) My kids are not in daycare and will not be for the foreseeable future. If Theo and Beck were going to go to daycare in the immediate future, I would probably reconsider whether they should get the pneumococcal and/or the rotavirus, because they would be exposed to lots of germs because of being around more kids and adults. I cannot imagine any scenario in which they would be in a care situation with other children or many other adults, so I have not factored this into my decision. They will certainly be around other children, but not on a daily basis.
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