TAPS Dance

Finally, the waiting game was over! We had endured the five day recovery period and I was finally on the ultrasound table covered in goo...and there were TWO strong heartbeats! Our tiny little donor actually had amniotic fluid and, most importantly, a bladder!!! The follow up echo cardiogram showed Baby B's heart function had improved and with time and proper medication it would likely heal completely! Hallelujah! God is so good! I was so excited I could have done a little dance (if I was allowed)!

We were released to go back home following our appointments and we couldn't get home fast enough....just ask the Kansas State Highway Patrol. A little explanation and we were on our way again following all traffic laws this time.  (Have I mentioned God is good?) We got home in time to pick up our kids from school and nestled in for some good old fashioned snuggle time.

My snuggle buddies! Yes, even Master Builder Super Heroes nap with their mommies sometimes.

Life at home settled into a new "normal".  I spent my days on the couch and my nights in bed; 22 hours out of every 24 being spent horizontal on my side.  The kids did great not being too rough on my stomach, but we quickly learned I could not be left home alone with the kids anymore.  You might think this is a pretty obvious statement given that we have a 4.5 year old and a 1 year old, but I was still coming to terms with my limitations. Do you have any idea how much trouble a 1 year old can get into in 10 minutes even with all outlets covered, all stairs closed off and cabinets tightly secured?

Hard at work keeping life interesting!

We spent 2-3 days a week at the hospital doing all sorts of testing.  We were rather unique in that we were the only TTTS patients currently being cared for at the hospital so we attracted quite the audience. Students and doctors alike crowded into our exam rooms, sometimes with standing room only.  My heart sunk a little each time someone asked to join us.  I was torn because I felt like they jinxed us; virtually every ultrasound there was a new problem (granted their job is to LOOK for problems) and then at the next one would have that many more people present.  I felt like a science experiment just sitting there on the table with all of those people studying my uterus and the precious cargo inside.  Plus I don't really like to cry in front of people; my face gets all pink and distorted, but I'm getting better with practice (better at just going with it - my face still gets all pink and distorted...what's a girl to do?).

I came very close to my breaking point when Baby A developed fluid around the brain and Baby B was showing signs of TAPS, a rare and very serious condition within TTTS where one baby becomes anemic. The doctors here in St. Louis had never seen this so early in pregnancy and so early following the surgery.  The Denver docs were scratching their heads, too. There was nothing we could do for either baby since we had so much separation from my uterus as a result of the surgery.  All we could do was wait and pray.  They tried assuring us that we were not unique in that we were unique, apparently that is the calling card of the TTTS disease, but I just knew it was because we allowed all of those students and doctors to jinx us.  Their mere presence was CAUSING fluid to develop around Baby A's brain and it was CAUSING Baby B to become anemic.  (Yeah, I know its fuzzy logic.)  I danced around the idea of putting a KEEP OUT sign on our door, but something about that just didn't feel right.

So I prayed about it and I came to understand that they couldn't be causing any of this...and I had three choices; I could either continue as-is and enter each ultrasound with suspicion, doubt and worry; I could ban all superfluous hospital staff and miss out on any insights they might have on the babies; OR, I could acknowledge each appointment as an opportunity to trust that God was in control here, not some jinx, and consider our appointments as a contribution to the comprehensive education of the hospital staff and students so that all of the TTTS babies to follow us could benefit from our experience.

It was kinda a no-brainer.  Although I will say it still took a considerable effort on my part to trust when the doubt tried to creep into the exam room with the interns. But you know what? The more practice I got at trusting and giving, the better the babies' readings became! That's right, the fluid around Baby A's brain seemed to disappear and Baby B's blood flows evened out! (Have I mentioned that God is really, really good?!?)

Sometimes God allows bad things to happen to test us and it is our choice in how we respond.  Maybe you know the right answer right away, but He is always there to guide you if you need help; just ask Him! You'll know in your heart if you made the right choice.

2 Timothy 4:7-8  

I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day--and not only to me, but also to all those who have longed for his appearing.

(I know we are far from "finishing", but this has been a good reminder for me to keep fighting the "good fight".)

Inspirational Quote:

"Life is a gift, and it offers us the privilege, opportunity, and responsibility to give something back by becoming more." ~ Anthony Robbins 

My Prayer:

Dear Heavenly Father,
I don't understand.  We've come so far and yet it still feels like everything is still so far outside of my control.  I know You are bigger than this so please help me.  I want to shut the door, I want to turn them away, but if I believe in You I cannot also believe in jinxes.  Please help me to  understand what you want me to learn from all of this. Please help me turn this doubt into faith and this resentment into love. Thank you.  I love You and I trust You.  Amen.