So Macy had her first bone marrow biopsy Sept 30th. Adam brought her bc I was sick and couldn't go. If you're sick you're not allowed in the Hemonc clinic for the safety of the other children. Adam said she did very well. Her counts came back kinda lower than I would like. Her WBC has always been a 9 or above, and it was a 5. Her platelets were 128,000. Normal is 140,000 and above. After her regular appt was the biopsy. So they put her under, and Adam said the procedure took about 15 minutes. He was back in the room before she woke up, and by the time they got home she was back to her normal self jumping and dancing. Once in a while she would put her hand on the back of her hip and limp a little, but that was gone by the next day. So the results. The first thing they look for is abnormal looking cells or clones. Having these could indicate the beginning of leukemia. Macy's cells all looked normal. That's great news! The second thing they look for is cellularity. Another FA mom told me that it should be 100 minus your age (in a normal non-FA person). So the typical kiddo it should be around 97%. Macy's was 50-60%. Which means the amount of blood cells her bone marrow is producing is about the same as a 50 year old. However, this is decent for someone with FA so I'm not going to worry. They also noted she has very low iron stores in her bone marrow. This is also very normal for FA. Those with FA do not absorb iron correctly so even a supplement will do nothing for her, so she will always have lower iron. So for now her biopsy will continue to be once per year.
So last Friday at 28 weeks 5 days, I started having some back pain and menstrual-like cramps. They started in the afternoon and I tried to rest while Macy was napping. It wouldn't go away so I sent Adam a text at work letting him know when he got home from work I was going to go to the hospital to be checked. He came home a little early and we met my mom at the hospital where she took Macy. They did some monitoring at the hospital and checked my cervix. To my surprise I was dilated to 2cm. About 10 days previous I was closed and long on the inside at 3.1cm. They immediately gave me a drug called procardia to try and stop my contractions but it didn't work. So they started an IV, and decided to start me on magnesium sulfate. First a really high bolus dose, then a maintanance dose. They warned me it was a nasty drug and that it would make me feel sick, and like my body was on fire. (Fun stuff). The big bolus dose was not fun. It relaxes all the muscles in your body so much that you can't really see or focus on anything (vision is like your really drunk). Your nose gets really stuffy, you feel loopy, and then your body gets hotter and hotter and hotter. The first dose takes 20 min. After that initial shock to your system your body starts to get a little use to it so your not as hot, but the other side effects don't go away. It also gives you really bad jelly legs to where you can't walk. Your legs just buckle beneath you. So after that, they checked my cervix again and it was at 3cm. They gave me the first shot of steroids for the babies lungs. (You get 2 that are 24 hours apart). And they called an ambulance and had me transported to Spectrum downtown. I was super loopy from the mag but I remember the paramedic was really nice, and we talked about ArtPrize on the way. Adam followed us with the cord blood kits. I also remember during the ride I felt stickiness up by back, etc. but didn't think much of it at the time. Once I got into labor and delivery I decided to reach back and see what the stickiness was. To my surprise it was blood, and lots of it.
The next 48 hours is kinda a blur. I was so loopy on the mag I don't remember many details. Also being on mag causes pulmonary edema (fluid in your lungs) so they had to check my vitals every single hour for the first 48 hours. And my blood every 6 hours. The steroid shot makes your blood sugar get really high so I was also being checked for blood sugar levels 4 times a day, and given insulin shots 4 times a day. They took me off the mag (you can only be on it temporarily) and my contractions seems to be at bay. They checked me again and I was still at 3cm 70% effaced so they transferred me upstairs to the floor where the women are "stable". I was so happy to finally get some sleep (Adam too). Getting up 15 times a night to pee (when you have jelly legs) amd have an IV pole plus monitors all over your belly is not easy. Once your transferred stairs they do monitoring 2x per day which is easier than 24/7.
Adam and I were excited to get one good nights sleep. I was able to get my IV out, and all was well. Then I started having contractions 5 min apart all day again. I tried to tell them that these were more Braxton Hicks style like I've had my whole preg (even though they were regular) and that it was nothing. But to be on the safe side we were transferred back down to L&D, had a new IV put back in, and was monitored all night. They checked my cervix and it was still at 3cm so we were able to be transferred back up to our room in the morning. Things have been pretty quiet for a couple days so I got my IV out again yesterday. Yeah!!! I still get BH quite frequently at times, but they are different than the contractions that landed me here so I'm pretty sure I can tell the difference.
Today has been 1 week since we've been here. I'll be 30 weeks in 2 days!!! That's very exciting and a lot better than if the twins were born when we got here at 28w5d. My high risk doctor and team comes around every morning to see how things are going. So far they are very happy with how things are going. They said if I make it to 32 weeks I will be released to go home on strict bedrest. They said if I went into labor at that time it would not be stopped because twins tend to do very well once you are 32 weeks. They would likely spend a few weeks in NICU but would more than likely not suffer any long term medical issues.
So we are taking baby steps, and our goal first is to hit 30 weeks. But ultimately 32 weeks. Something kinda on a funny note is I am on a strict diet here. My carbs/sugars are limited and I get 3 meals and 3 snacks a day. Someme comes to my room everyday and does a menu where I pick out my meals and snacks for the following day and their delivered at 8am, noon, 5pm (meals) and snacks 10am, 3pm, 8pm (snacks). Well, for some reason the computer doesn't want to give me my snacks. My nurse or dietician has to call everyday after my missed snack to straighten it out then the next day comes and I don't get my snacks again. I usually wake up in the middle of the night starvng. Hopefully it's figured out soon because I need my snacks.....preggo with twins remember!
Lastly, I wanted to thank my parents and Adam's parents for taking Macy this whole time. Adam has been with me the entire time, and went back to work yesterday. But comes back after work and stays the night here with me. My parents have had our dog the whole time too; which is basically like another child to take of. thank you!!!
I did earn wheelchair privileges yesterday so Adam got to push me around the hospital for a while to get me out of my room which was nice!!! That's about all that's going on for now. Hopefully it stays that way.