Medically impossible?

Fight TTTSIt has been a good week… a very good week to say the least. Our Monday ultrasound got moved to Tuesday due to the holiday weekend and we were anxious to find out what was going on with the girls. We had received good reports the week prior and MaK and I were curious to find out if the pessimistic doctors’ negativity was actually the reality of the TTTS diagnosis. I guess in order to accurately describe what happened today I’ll have to start at the beginning of our diagnosis and go from there.

On May 6, we spent about ten hours at Cincinnati Children’s hospital having an MRI, high level ultrasound, and echocardiogram performed on MaK and the girls. After the MRI and ultrasound, we got a call from our nurse informing MaK that she should not eat anything until our final consultation. Based on the results from the testing thus far – they expected us to be in the operating room by end of day. At the time, the nurse didn’t explain anything further and just reiterated that we would have a consultation with the specialist(s)/surgeons after our last test. We had no idea what was going on. We had no idea why we might need surgery at the end of the day. And we had no idea what the results of the tests were. Going into this day, MaKenzie and I prayed that we would not hope or despair in anything the doctors told us. We would not worry and we would walk through this hoping in the Lord and resting in the fact that He is in control.

Around 4 in the afternoon we finally got to meet with our team of specialists. All our tests were completed and we had just been sitting around for about an hour or so waiting for our consultation. Our hearts were heavy and we were pretty sure that MaK would have surgery that night. We met with a maternal fetal specialist, another doctor (I don’t remember his fancy title), our nurse and a liaison for the hospital. It was a pretty intimidating meeting. They had all of our tests pulled up on a projection screen and through a series of detailed reports and images, they began to give us the prognosis. In Twin-to-Twin (TTTS), there is a “donor” and “recipient” – the donor baby is the smaller of the two who is essentially sharing too much with the “recipient” baby, who is larger and receiving much more blood and nutrients. They told us that the donor baby had less than 2 cm of amniotic fluid and the recipient had around 17 cm (average is around 5-6 per baby with identicals, but can range some). With that knowledge, it was obvious that one twin was working extra, extra hard to process the extreme excess fluid in her sac and her heart was showing signs of being overworked. In turn, the smaller twin wasn’t getting what she needed in the process. The specialists’ diagnosis was that our girls had Twin-to-Twin Transfusion, a very serious (and extremely rare) condition that happens only with identical twins. Without any treatment, the mortality rate of TTTS is 80-100%. At the end of our consultation I asked the doctors if they ever saw this condition right itself, or if the fluid levels could ever even out “on their own”. His response was, if they diagnose it as true Twin-to-Twin (which they had), the fluid levels never equal out and medical intervention is necessary for the best chance of survival for the babies. He said they found enough evidence that suggested that our girls were currently in Stage 1, with a forecast of progression on the horizon. The TTTS can progress quickly or remain at a plateau at any moments notice. The good news from that day was MaK did not need to have any immediate procedures and we could go home and continue to pray for God to heal.

The following Monday we had another ultrasound to see if the symptoms were still progressing. The tests showed that the twins still had fluid levels of 17 and 2. Our doctor came in after the ultrasound and basically explained to us that we should do an amniotic reduction because it is the first step in battling this disease and that we were on a time crunch for a number of different reasons. We asked for a couple minutes to talk over what we wanted to do. It wasn’t that we didn’t want to do medical procedure, it was the fact that if we did a medical procedure it felt like our hope would transfer from God to the procedure and we were desperately trying to hope in the Lords healing. MaK and I said a quick prayer and asked God to not let us step outside of His will for this situation and that He would be clear on what we should do. After a couple minutes the doctor came back in and we told him we would do the amniotic reduction. He looked at us like we were crazy and said “why?” We were flabbergasted he reacted this way. Just 5 minutes ago he was telling us we needed to have the procedure done. His response surprised us, “Even though I’d get paid for this procedure and it’s no sweat off my back, I know you both are uncomfortable with doing this right now, so why don’t we just wait a few days?”. WOW… answered prayer!!! Later that week we found out that even though the fluid levels had not changed it looked like we were progressing into stage three of Twin-to-Twin but still no procedures were necessary.

All of this leads me to yesterday. We had our ultrasound Tuesday morning and the girls fluid levels were at 5.5 and 5.6… an almost identical measurement, something all the specialists had ruled out as impossible to happen naturally. Ever since we received the diagnosis just one week ago that it looked like we were entering into Stage three, our girls’ have been slowly but surely sharing with one another (that’s what MaK and I keep saying). Literally, one is decreasing so that the other might increase – so that both can grow. This trend has been so obvious that every time we go in for our bi-weekly test the medical teams that perform our ultrasound keep asking if we’ve had any procedures and when we tell them no… they can’t believe it. Our medical team can’t explain what is going on, in fact at the last appointment one of the doctors kept shaking his head and saying “I don’t know, I just.. I don’t know… this is not medically possible”.

There’s no “out of the woods” with Twin-to-Twin Transfusion Syndrome. It is a battle that carries a lingering unknown with each new day. Progression can occur at any moment in the pregnancy. Today, though, and this week, we are recognizing that our Healer is on the move and we are thankful for the three, healthy growing Dykstra girls that God has entrusted to MaK and I. Maebyn and her sisters have a story to tell and we pray that we are able to lead them and love them the way our God is so deeply loving us through this journey. It’s His story after all, not ours.

Ross & MaKenzie

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An unexpected journey

the_girlsMay 6, 9:30 am: It’s Monday morning, we arrive to the hospital to have another ultrasound and see how the twins are progressing. We had just gotten back home from Mexico the day before and MaK, Maebs and I were so excited to see the girls again. We’d been in just a week and a half prior (around 20 weeks) for our anatomy scan and everything looked great, we were so thankful. Things started pretty normal and two hours later the nurse excused herself from the room to “call the doctor”. Something’s wrong. MaK and I tried not to over analyze and sat still with Maebyn in the room until the nurse walked back in. “MaKenzie, can you come back in today? This afternoon maybe? The maternal fetal specialist is reviewing your ultrasound and would like to speak with you.” Two hours and one consultation later, MaK and I sat on the couch in our living room repeating the doctor’s words over and over in our minds and aloud. Twin-to-Twin Transfusion Syndrome, high mortality rate, triple fluid levels for one twin, heart complications, MRI, high risk, Stage 1

God is in control.

I know I’ve mentioned this multiple times, but after MaKenzie gave birth to Maebyn we decided that we would let the Lord decide how many children we would have. That meant no more contraceptives to prevent pregnancy. This seemed like a huge leap of faith to us but it was something we felt the Lord leading us to do. Needless to say, if you’ve read my previous blogs, God has taken our act of faith and flipped it on its head. Pregnant three months later? Twins? We were shocked by the news of both. Ever since we decided that we would let the Lord decide how many children we would have our faith has seemed to be tested in almost every area of our lives. Now we faced an even bigger test with an even more uncertain outcome and we could feel fear and doubt creeping in strong.

As the weeks have progressed, the feelings of just being straight overwhelmed have only increased exponentially. We’ve started getting bills from our ultrasounds for the girls and they are nearly four times more than what they were with Maebyn. We knew we’d have to have faith in our finances but we didn’t think it would start even before the twins were born. We’ve spent our fair share of time at Cincinnati Children’s Hospital and the Maternal Fetal Specialists office and MaK has been undergoing testing nearly every 2-3 days to monitor the girls’ progress.

Since the moment we found out about the girls having Twin-to-Twin Transfusion Syndrome we haven’t been sure of how exactly to walk through this but one thing we do know is our hope is in the Lord. A couple of weeks ago I was reading through Exodus where the Israelites are led to the Red Sea by God. Ironically enough, MaK and I were talking about this just a week or so before we got “the news”. The Isaraelites had just been set free from their enslavement through miraculous events and were headed to the Promised Land. They were literally walking away from their life as slaves, following the exact path God was leading them to and suddenly they are faced with the Red Sea. With the Egyptians coming in close behind them to reclaim them, they start to say “if only we could go back to being slaves”. They could not imagine how they could be freed from their situation. Here they were…. trusting God, following His leading, only to be faced with an obstacle that in their minds was too huge to cross over. I bet no one in that entire camp even entertained the idea that God was going to part the water, allow them to cross through and then collapse the water in on the Egyptians who were trying to reclaim them as slaves.

It’s here that MaK and I find ourselves. The situation we are in feels so overwhelming in just about every area of our lives. If we both sat down and tried to think of a way out, I don’t think either of us could even imagine what that would look like. We have been made ever aware that we have no control in this situation and that this story belongs to the Lord. We don’t know what is going to happen, and MaK and I have spent the majority of the last few weeks just crying because the unknown can be so scary, but I promise you this… we serve a real living God and when this situation is over His name will be glorified, no matter the outcome. That may mean that we have two healthy little girls and that may also mean the opposite but with everything inside of us we are trying to trust the Lord. This is His story and all we can do is trust that He is in control.

We’ve had a roller coaster of a month – one week hearing that we were considered Stage 1, the next that there may be complications with blood flow in one twin that could mean progression to Stage 3, to recent news this week that both girls are now in stable condition and seem to be growing well. We are humbled to report that this week our team of specialists at Cincinnati Children’s have determined that “prayers seem to be working” and the fluid levels of both girls are slowly reaching stable amounts. The days, weeks and hopefully months ahead are completely unknown but the certain fact is this, our hope is in the Lord, not in what the doctors tell us from day to day.

Ross