We've done it! (and by we, I mostly mean these two little munchkins that have been fighting their way through the last 3 months!) We hit the 30 week mark this week and for some reason, it feels like a bigger milestone to us than it may to a lot of others…
If you've been following along throughout this roller coaster of a pregnancy, than you may understand what a big deal making it to even this point is! It's even a bigger deal that we have high hopes of making it another 4-6 weeks at which I will be considered "full term" with these babes and they will be safe to meet us and the rest of the world!
It is still a little mind blowing to me that we are at this point, given where we started, and that these sweet baby girls are continuing to show improvements, are growing well and acting almost as if they never gave us the life threatening scares that we had for a good month and a half! I figured it has been a while since I did a little update so here is how the last month or so has gone for us..
The last time I updated we had just hit our 30 day post surgery milestone (which was also huge!) and although babies were doing better, there were definitely still some concerns, specifically about Baby A's heart and how it was functioning. We have since then been to Primary Children's hospital twice for monthly checkups with the Cardiologists and weekly with our MFM specialists (seriously, SO many appointments!) Week by week our doctors have noticed improvements- even if it's just small improvements like a little less fluid around Baby A's heart, or better blood flow to other parts of her body (which in turn, means the heart is starting to show more and better function). These sometimes small improvements were keeping our hopes up for the weeks to follow and I looked forward to each weekly appointment to see those little beating hearts and watching them flip and kick around on the screen. Because we were in weekly and seeing such small improvements a little at a time, it didn't seem like much to update week to week, but from the last time I updated, these are some of the miraculous improvements we have witnessed:
- Baby A (recipient baby) had a large amount of fluid around her heart, poor -to almost no- function of the left ventricle, bad blood flow to certain parts of her body including her kidneys and other organs, as well as an enlarged heart chamber with thick walls.
As of this last week, our doctor said there is little to almost no extra fluid around her heart, blood flow and all the organs look healthy and are showing no signs of distress, and the ventricle is finally starting to look and act like a functioning heart would! He actually used the word "great" which, when I heard, I about fell off my chair since nothing about this pregnancy has been noted as "great" since almost day one. The heart itself is still slightly enlarged due to the TTTS, but our doctor said it has shown incredible improvements, especially with how severe it looked at one point and he has nothing but high hopes that it will continue to improve each week!
-Baby B (donor baby), although healthy for the most part, was definitely having her issues due to the TTTS for a minute. Her bladder and kidneys were struggling due to minimal fluid and she was definitely on the small side since she had been continually giving all her nutrients away. Once the TTTS had been cured, she immediately showed signs of improvement health wise and her bladder and kidneys were functioning properly. On top of that, she just went ahead and proved more doctors wrong by doing some serious catchup growth! Part of the issue of the disease TTTS is that the donor baby will always be significantly smaller or will have slower growth because of the issues they face giving away all their blood/nutrients. At our worst point, the babies were about a 34% difference in size where Baby A looked massive compared to Baby B and we were so nervous B wouldn't be able to catch up and would always be extra tiny. At our last checkup there was only an 8% difference in size! This is actually a pretty incredible number, meaning that Baby B kicked it into gear and has done an incredible job at growing, growing, growing!
We have, for the most part, had really great news overall. It hasn't all been perfect, but when you're seeing improvements you really can't complain!
We have, however, realized that there is still a ways to go and we still have a few issues that we will have to face. We were informed by our surgeon early on that not only did our babies have TTTS, but they also had a placental share issue called sIUGR (Selective Intrauterine Growth Restriction). When identical twins share a placenta they sometimes have the issue where one is getting a larger portion of the placenta and the other is running off of a smaller portion- this is all due to total chance and only happens in about 10-15% of monochorionic twins (identical twins that share a placenta). Without getting too crazy medical on you, it basically means one babies cord is attached in the middle and she is getting plenty, but the other attached far off to the side, so she is running on only about a 25-30% share. Since the placenta gives the babies everything they need to survive, it's not great to find out that there is a possibility that one baby could have a more difficult time getting oxygen and/or nutrients. This is a completely separate issue than the TTTS and there is no way to fix it. (Seriously though, if it can go wrong, it will with us, right?!)
Our surgeon informed us that it wouldn't be an issue until later on down the road and closer to the end of pregnancy when we may start to notice signs of her "running out of placenta" with the chances of them having to be taken early if she wasn't growing each week.
Last week our specialist mentioned that he was starting to see some signs of the sIUGR being a possible issue with Baby B. He noticed some "abnormal" blood flow from the placenta to Baby B and mentioned that it is most likely the starting signs of possible placenta failure for her. He said it could be something we ride out, or there could be the chance that it could be more serious- it all depends on how she's doing and growing each week. He then informed me I would be starting non-stress tests twice a week to monitor their activity and I would need to start being seen 1-2x a week for appointments to monitor everything closely.
Oh the joys!
I can't begin to tell you how these two have already started giving me grey hairs and seriously challenging me in the parenting, patience, and humility departments! But at the end of the day, even with all the negative we have faced and could still possibly face, I am still overwhelmed to think of all the good! We didn't even think we would be at this point 3 months ago and here we are, with growing and thriving babies! We are at a point that even if they did come early, medical advances would be able to take care of them and provide them with the care they need and that to me is incredible enough to try and not think about the "what if's", but about how when this is all over and done with, how incredible it will feel to hold these two little girls in my arms, kiss their little faces and be grateful for how abundantly blessed we are!
I will try to give more updates more frequently now that we are getting down to the wire! Stress tests have been no bueno, but the babes have passed with flying colors each time so far, so again, no complaints from me! I'm just so grateful I have such awesome doctors that want these babies to make it here safe and sound just as much as I do!
As for the rest of this post, I know I haven't done much maternity fashion, but I do still dress up from time to time to get out of the house, so here is a favorite look of mine from recently!
Make sure to follow on Snapchat for updates about appointments and babies too if you like more frequent updates!: robynstew <3