32 weeks! We are almost at the end of a long, long road. Our boys have made it so far, and as taxing as it has been, we are celebrating: 32 weeks! We are out of the dangerous premie zone, and now we are eagerly awaiting to meet our sons in 2-4 weeks.
With each week that passes, the doctor’s words at that very first specialist appointment (when I was only 20 weeks) echo through my mind: “Let’s get you to 24 weeks — viability.”
Twelve weeks ago we jumped on an exhausting emotional rollercoaster into the unknown that comes with a twin-to-twin transfusion syndrome diagnosis. It suspends you in a helpless, week-to-week waiting game. Fluid level checks. Heart rates & dopplars. Fetal-ECHO’s to detect heart damage. Growth scans to track the size discrepancy between the twins. Our life has revolved around hospital visits and appointments.
I had no control over how my placenta chose to nourish the boys. I could not will it or wish it to do what I wanted. I did not cause it, and I could not fix it. And without any intervention, the statistics for outcomes for sweet babies with twin-to-twin transfusion syndrome are depressing and grim. With trembling hearts, we appealed to the One who can command my placenta, the One who can sustain, protect, and nourish life. We did our part by pursuing the best medical care we had access to for our boys, while asking God to work in my womb on our sons’ behalf.
We began in mid-March with Stage 1 twin-to-twin transfusion: at our first Cincinnati hospital visit, Grayson had barely enough fluid to continue to grow (2 cm), while Noah had the maximum amount of fluid before it was considered dangerous for him (8.5-9 cm). Noah was beginning to show signs of some minor heart damage, and there was a 24% size discrepancy between them (20% & under is considered “normal”). That first visit was so disheartening. While we had one of the more encouraging cases of TTTS, we were told to expect it to worsen and were prepared for a range of outcomes — super-early delivery, losing one or losing both, and on and on. We were given the option of surgery on the placenta, but since my condition wasn’t severe, we opted out. Instead, I began a blood pressure medicine that sometimes works or helps a little.
We asked for prayer — we were so greedy for prayer! — and were amazed by how many friends & family and even wonderful people we did not know who came alongside us, encouraging us, lifting us up, checking in on us, helping us financially, providing meals, sending notes. It was one of the most beautiful things to have ever happened in my life. Our boys were loved. Our boys were remembered. Our boys were fought for in the spiritual arena.
This was my facebook post after our final Cincinnati visit at the end of April:
Rusty Tatum & I returned earlier this week from our latest and final Cincinnati trip! God has been at work sustaining & protecting our sweet boys! The markers of twin-to-twin transfusion are GONE! The fluid levels between the boys are almost completely even, with the latest appointment showing Noah having 5.1 cm & Grayson having 3.9 cm – the fluid discrepancy is gone! The growth discrepancy, which was 24% a month ago (anything over 20% size discrepancy is considered abnormal), was 15% earlier this week – both boys are growing at a healthy rate & Grayson is no longer being “deprived” by the placenta! The elevated levels from the fetal ECHO that we have seen the past 2 times (which could indicate heart damage) are GONE! They are back in the normal range. When we met with the Surgical Director of the Fetal Center on Monday, he said, “I can’t explain why it has gotten better and reversed.” We just smiled! We KNOW why! Our God is greater than statistical outcomes (which for twin-to-twin transfusion can be very, very bleak). He is not bound by odds & percentages! We are so thankful He heard the multitude of prayers for our sons & changed the scary “predicted” outcome! While the doctors have said that twin-to-twin transfusion can still “rear its ugly head” once again in this pregnancy, for the first time multiple doctors are telling us that they see they boys making it to 35-37 weeks! We are praying for that!
Since that post, while it has at times still been an up-and-down rollercoaster, Noah & Grayson are still doing well! At the beginning of May, I spent 4-5 days at Erlanger to treat low fluid levels. This was not twin-to-twin transfusion syndrome making a comeback, but something my doctor said could happen in any twin pregnancy at around 26-27 weeks. Thankfully, we did not have to deliver, the fluid levels rose again, and I have been enjoying a sweet five weeks home home home! with my girls & Rust. At the boys’ last growth scan, there was only a 3-ounce difference between the two — that is a 5.9% discordance! Our boys are THRIVING and we are so, so ready to welcome them to our family!
We do not know what may await us in the next few weeks or months, but we are so thankful for all the ways God has provided for us, taken care of us, and loved us through friends and family on this journey to meeting our sons.
I know I don’t know how to write a short post. : ) I wanted to collect all my thoughts on where we have been the past three months — probably more for me than anyone else! To quote from one of our favorite series, the Wingfeather Saga by Andrew Peterson, “But what Podo had said was true– telling the story hurt and helped all at once. Already he could see ways the story had changed him and would go on changing him.”
I see how this “story” — this time in our lives — has changed me, changed Rust, changed our marriage (for the better!), and I know that God will continue to use this particular season to change us even more. I hope to share some time before Noah & Grayson arrive the thousand things we have seen God doing in our lives through this!