On Tuesday (the 29th) I had my monthly appointment with my OB. She does a quick ultrasound at each appointment in lieu of measuring fundal height (how large the uterus is) so we took another peek at the boys. I had been feeling lots of movement from both of them until a few days before that appointment when I suddenly felt nothing for days. At only 16 weeks many moms can't feel any movement and it isn't anywhere near a good indicator of health for the babies so my brain knew this wasn't something to worry about but of course that doesn't stop a mama heart from fearing the worst. So that look was much needed! Both boys were moving and had good solid heart beats and I was able to take a breath finally. We talked a little about my delivery and hospital options and she told me that she's only ever had one other patient with TTTS. I don't like being unique in this way. She ended by telling me that she'll see me every two weeks now for awhile. I drive about 45 each way for each of these doctor appointments and they never have openings on the same day so I'm up to once or twice a week now.
Wednesday brought my second appointment with the MFM specialist, Dr B. By this time I felt like I had a much better grasp on what we were looking for and at so I could tell that some of what the tech was saying meant I wasn't about to get great news. But it is still amazing every time I get to spend a little time peeking at their little bones and faces and fingers and toes. I got to see a perfect little foot! But the measurements I saw were definitely still not good. Baby 1 had about 1 cm of fluid in the largest pocket she could find around him and she wasn't able to locate his bladder. Baby 2 had around 9 cm of fluid. Dr B came in at the end and confirmed that things were trending in the wrong direction. The boys are still fine but the blood flow in the brain of one of them (I missed who it was) was less than the week before and the fact that we could no longer see the bladder in baby 1 meant that he is struggling with his low fluid. She told me that she was going to call the hospital in Houston and see if they were ready to see me.
Houston is the closest location that offers a surgery that can potentially fix the transfusion. It's called fetoscopic laser photocoagulation. Similar to an amniocentesis, they insert a small catheter into the uterus and use a laser scope to basically cauterize the connections between the babies. This surgery carries many risks and possible outcomes but is the best chance once the babies reach stage III or greater TTTS. My understanding is that we're just barely into the numbers considered stage III.
Dr B talked to Houston and based on the conversation they said they wanted us to come down for a full evaluation and potentially same day surgery on Friday, today. We scrambled to make plans for the kids and the dog and travelling and were a couple hours from heading out the next day when I got another call from our nurse coordinator in Houston (such a great thing to have! She's a personal connection that I can call or email any time and she'll get the answers I need) saying that my doctor down there finally received my full file and wanted to wait a little longer. I know that they only start considering you for surgery at 16 weeks and she said that with it being so early the Dr wanted to wait as long as possible. This prevents us from going all the way there only to be told to come back in a week but it also meant we had to scramble to undo the plans we had made in a hurry. The Dr in Houston wants us to see my MFM here on Monday morning and they'll talk immediately after to make a plan. The nurse said it's more than likely we'll be going down to Houston next week after that appointment but it's not certain enough to make appointments or travel plans or anything.
All of this back and forth makes it very difficult to arrange care for our kids because we live 1000 miles away from our family. Mike and I both have parents that want to do everything they possibly can to help us but nobody can get a flight that fast and driving through the night to get here doesn't set anyone up for success in an already stressful situation. Thankfully we have made amazing friends in our town including many who have offered repeatedly to step in and do whatever is needed to help us. Even the local children's librarian, who genuinely loves all the kids who come in and is a good friend, offered to come stay with the kids if we needed her to! One good friend, who has three kids of her own and watches her nephew during the day, agreed to take our four raggamuffins and was even willing to take the stinky dog for the four days we would be gone during our original planned trip. Our neighbors graciously agreed to take said stinky dog though to take a little pressure off my saint of a friend. Then we had to call all those people back and tell them thanks but no thanks! I've never felt such an outpouring of love and am so thankful for the people we have in our lives! I often miss our old community and know they would do much of the same but we had family there so it was different in many ways. It has made me realize that I've often made excuses when I could have been of service to those around me. I'll be better in the future when I have my feet under me again.
So we wait until Monday. I have felt lots of kicks today and yesterday, which is very comforting, but I'm not sleeping well because I am a mom and just worry with my eyes closed. I'm trying to take this time as an opportunity to get some things done before the possible surgery. I would most likely be on bed rest for at least a week following the procedure which means a week of cleaning, laundry, and meals that I'm not able to take care of. Mike and the kids are obviously able to keep us from descending into squalor but we're already starting from about 10 steps behind because I've been letting things pile up more than I should. I could blame that on being pregnant with twins but really it's because I'm a lousy housekeeper. I do the bare minimum until it makes me crazy and I clean everything until I'm exhausted and crying. I can't explain it or fix it so we all just deal.
My friends have been such an amazing force these last few days! One came over today and demanded to do some chores and another is coming over tomorrow. It's hard for me to ask for help from anybody so for these women to know that they need to just show up means so much. It's still weird to try to think of things that other people can do around my house and even more strange to watch them do those things while I sit on the couch. I love when a friend keeps me company while I get work done but this is very different. I cleaned out my half of the garage today so that I could park our new van in it for the first time in weeks (shh, don't tell my friends. There's still work to be done in there but my children don't have school tomorrow so I plan to direct from a chair while they do the rest) and because it's cold in the mornings and I don't want to park outside anymore. That in combination with the few other things I did around here today was more than my body was prepared to handle and it reminded me in no uncertain terms that I need to take things in smaller chunks. So I'm going to be better about that.
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