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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No thanks, hot yoga

Downward-Facing Dog

Couch- Friendly Downward-Facing Dog

So yesterday one of my friends asked me if I wanted to accompany him to his hot yoga class. I thought sure, why not, I’ve never done yoga before and it seemed like a welcomed break to my routine. MaKenzie had done hot yoga once before and had gotten a great work out, so I was excited to try it out. Needless to say, it was an interesting experience to say the least.

The first site to greet us when we walked in the doors for the class was a middle-aged man doing bridges (think: ultimate hip thrust) in a much-too-tight speedo. If you don’t know what a bridge is click here. I can’t think of a way to explain it and I think the picture is worth a thousand words (especially when you picture some guy doing this pose in a speedo). The awkwardness was like a Thigh Master commercial times one hundred. I tried hard not to judge him, but I couldn’t help but wonder why he was completely OK with elevating his penis so that it was the center of focus for the entire room.

After I settled down and got my head centered around something besides the speedo, the class began. I enjoyed the first 20 minutes as I could do most of the poses and although it was hard I seemed to be doing alright. Then it seemed like the instructor really amped up the heat and the difficulty of the session. I started finding myself not being able to do most of the poses, which I was fine with, until I looked directly in front of me and saw a 50 year old woman doing every single pose to perfection. Sweet. Ironically enough, this got me feeling a little competitive… I thought I may not be as flexible but, hey, I can at least try and complete each exercise. Well, the joke was on me. With over 30 minutes left I found myself laying on my back. Giving up is an understatement. My muscles were tired and I felt like at any moment I was going to freak out because of how hot I was. At the end of the session, I basically sprinted out and drank as much water as I could with out throwing up. Before hot yoga I thought I was in pretty good shape but it turns out flexibility isn’t a strong point of mine.

Later that night I had to go play in my rec league basketball game. I won’t go into details about the game but al-in-all I sucked… bad. I was basically just trying to make it through the game. My whole body felt like a limp noodle. Top five things I learned from yesterday’s experiences:

  1. I will never do hot yoga again if I have to do ANYTHING else that day. (This includes anything that doesn’t involve sitting on the couch)
  2. I’m getting older and my body doesn’t like to be abused in a flexible fashion.
  3. If I ever do hot yoga again, I will bring 7 jugs of water.
  4. I use to be OK at basketball but now I just get by on the fact that I’m 6’5″. Where did all my skills go? Seriously. I’m old.
  5. I’m not flexible at all. I don’t want to be flexible. I don’t want to put in any work to become more flexible. I hate flexible-ness.

Small plus side, I burned enough calories yesterday to last me a few months. I think I’m done working out for the week.

Spent,
Ross

I’ve been working on my fitness

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Ready to pump some iron, Dad

Being a stay at home dad is fantastic but I’ve noticed the need for a constant routine in my life in order to stay productive. Without a routine I think I might go crazy. The one thing that has been consistent in my day to day life (aside from diaper changing and endless bottles) has been my trip to the gym to get my fitness on. Although, this is not the reason I started working out, it has helped me in my transition to being a stay at home dad. Since Maebyn still needs a year or two before she can spot me during my lifts, the $2 daycare at our local rec is quite the commodity.

Athletics, fitness, and working out have always been a big part of my life. God has made me fairly athletic and throughout my life I’ve always enjoyed being active. I’ve learned many life-lessons through playing sports (teamwork, leadership, submission to authority) but it wasn’t until I started weight-lifting that some seriously obvious and important things started to be revealed to me. These things aren’t revolutionary but for me they’ve had some significant impact on my life. The best way I know to explain this is by telling my story….

Like I said, I’ve always been a decent athlete. The sports I played in high school I put little time into getting better, stronger, or smarter. I got by on my natural ability. I went to camps, practiced hard, and gave every sport my focus, because I loved to play, but the truth is when it came to putting in the hard, extra work, I didn’t do it. As I look back, I can see how this mindset really infiltrated most areas of my life. Was I a good athlete? Yes. Was I a decent student? Yes. Was I a good Christian? Sure. However, all these things were easy. I didn’t really work at it, they just came naturally and even worse, I received a lot of affirmation in these areas of my life which led me to believe that I was doing special things. The truth was though that God had blessed me with abilities that I was more than happy to take the praise for but unwilling to put in the hard work to be better.

When I finished my competitive sports career in college I decided to take a break from things like running, lifting weights, and really anything other than pick-up basketball. Needless to say, my body transformed into something I had never seen before. Yikes. Keeping in track with my life, I had never needed to work out in order to be in shape, I just was in shape. After about 2 years of marriage and 25lbs of extra weight (and many double cheeseburgers later) I decided to start working out again. I started working out and quickly lost the weight I had put on in about three months. That seemed easy, so I stopped working out again for about 9 months. Much to my demise, I promptly put back on the weight. So I started back up again in January. I was almost through March and I had the urge to just stop again. I had lost the weight and that was really all I wanted to do. However, I decided to stick with it. Over the next couple months my body transformed. I started putting on a lot of muscle. If you don’t know me, I’ve always been pretty skinny, so having muscle on my body was something new. I fell in love with working out and have been consistently doing it 4-6 times a week for a little over 2 years now.

Through this process The Lord revealed things about my heart to me. I wanted quick fixes to my life problems just like I wanted to go to the gym once a week and transform my body. Can it happen for some people. Yeah, I guess it can, we all have a different story. For me, however, I think the Lord has been teaching me about discipline and the importance of setting out to do a task and grinding at it day after day, especially when things got tough. I’ve also come to realize that you always get a better work out when you work out with somebody. I can work out by myself and see good results but the times I’ve seen the most successes in my work outs have been when I consistently work out with someone else, someone who pushes me to go farther. I’ve noticed the same to be true about my life. Relationships have brought great growth to our lives and marriage, without them we would not be able to go as far as we would on our own.

Hopefully this wasn’t too long winded but hey you needed a mental work out, right?

Ross