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