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.