Wednesday, September 14, 2016

TTTS

there is a lot of ground to cover because it has been quite some time since I last wrote. instead of one, long blog post, I think I will write a few semi-long posts. starting with the heavy hitter first. 

TTTS or twin-to-twin transfusion syndrome, or in our case, triplet-to-triplet. TTTS is a scary, serious, and sometimes fatal syndrome that can occur when two or more babies share a placenta. per my MFM (maternal fetal medicine) doctor, it occurs in about 15% of cases with twins and comparable statistics with triplets. because of the shared placenta, there is shared blood flow. TTTS is when, due to no fault of his own, one baby starts "stealing" from another (or two other) babes. this is detrimental to all babies involved. both too much blood flow (to the recipient babe) and not enough blood flow (to the donor babe(s)) can cause heart failure and other fatal health issues. signs of TTTS are: size of babies and amniotic fluid levels in the babies' sacs. these are the two markers that we pay special attention to at our bi-weekly ultrasounds.

at 18 weeks I had a routine ultrasound. at this point ultrasounds and doctor appointments were becoming common place, so I got cocky and went to this one alone. it was in the middle of the day, and John had work obligations, but neither of us gave it a second thought that I would handle this one solo.

the MFM office I was going to in North Carolina is in a time of transition. one of the doctors had retired, so there was a series of locums coming in to cover for a couple weeks at a time. we had had good luck with each of the locums we had seen before, but this day was different. 

the doctor walked in after my ultrasound and got right to the point. in a blur of words, I managed to pick up on the fact that she was extremely concerned about TTTS. the phrase "your children dying" was used way too many times (any amount of times over 0 is too many times; this chick probably said it 5-10 times), and the overall theme was DOOM AND GLOOM. she briefly mentioned the two types of treatment for TTTS, but said "I'm not aware of any hospital in the country that would do it on triplets." She also assured me that there was "nothing I could do to prevent this or help in any way."

I rushed home after the appointment and fell apart in my husband's arms. I felt hopeless, confused, lost, angry. we had done our research on TTTS early in my pregnancy and knew the basics, but never expected a conversation with a doctor about TTTS to go SO poorly. 

John got straight to work doing as much research as possible. it took one google search for him to find a list of over 200 hospitals who do the laser ablation surgery (the primary treatment for TTTS) on triplets, one of which is in Ann Arbor, just 2 hours from where we will be living in Michigan. this was our first clue that perhaps the doctor didn't know what the heck she was talking about. 

I found the TTTS Foundation online and immediately started printing out their checklists and articles and e-mailed the founder of the Foundation. I heard back from her within an hour in an e-mail where she offered love, support, information, and prayers. she sent me an evidence-based article showing the positive impact that drinking 3-4 Boosts or Ensures a day and horizontal rest can have on fending off TTTS. you better believe that John was at the grocery store within minutes stocking up on Boost while I laid on the couch continuing our research.

it was a hellish two weeks until our next appointment. our prayer warriors were in full force, and I was guzzling Boost like it was going out of style. 

at our 20 week appointment John had the checklist of things to look for from the TTTS Foundation out as we paid special attention to the weights of our boys and the amount of fluid each had in his sac. after the ultrasound we were fortunate to meet with the primary doctor in our office, not a locum. and boy oh boy was she amazing. she took at least an hour to sit with us and explain every aspect of the ultrasound and the health of our boys. she drew a chart showing the different measurements from 18 weeks compared to the measurements at 20 weeks and impressed on us the importance of STABILITY. if the measurements remain stable, we have reason to rejoice. and at 20 weeks, every measurement was stable. and so we rejoiced.

leaving that appointment we were filled with hope. I have since moved to Michigan and had my first appointment with my new MFM this week at 22 weeks. my beautiful mom and sister sat through the 2 hour ultrasound and the 1 hour meeting with the doctor with me as we scribbled notes while receiving yet another great report. this one was even better than we could have hoped for. 

my new doctor, Dr C we'll call him, is a dream. he is down to earth, straight forward, kind, compassionate, and super smart. long story short, he doesn't really see any signs of TTTS at all and is very impressed with the boys and with me and how well we are doing. if the boys weren't in utero I'm sure they would have been grinning like an idiot just like I was. you hear that boys? we're doing great! we are kicking butt at this whole high risk pregnancy thing. gloom and doom doctor can suck it.

of course TTTS remains a concern until these little men are born, but we are feeling equipped with information, a stellar team, and treatment options if need be. as if in celebration, the boys have started moving and kicking like crazy.  

each kick makes me grin like an idiot as I daydream about having these little boys in my arms. I thank God for His faithfulness, His provision, His sovereignty. He had us in His hands all along and will never stop ordaining our steps in His great wisdom. can't wait to teach my little guys all about this great God who knit them perfectly together in my womb. 

"It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

1 comment:

  1. Wow! The way health care professionals interact with patients is so important and it is amazing how bad some of them can be! Reminds me of a (much, much less serious) experience I had when my infant stopped gaining weight for almost 4 weeks and I took her in as soon as I figured out she wasn't growing. The nurse weighed her and then went to put it in the chart--she then BURST into the exam room in a total panic, frantically exclaiming about my daughter's lack of weight gain. I said "that's why I'm here!" She left and I immediately started crying as she had communicated nothing to me but panic that something was seriously wrong. Thankfully the doctor was incredibly calm and reassuring. I am so thankful that you have gotten better doctors since and that things are looking great! I'll add "no TTTS" to my prayers!

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