Friday, June 10, 2011

The Fight Begins NOW! (this time, we need big prayers)

I'm not exactly sure how to begin this post, so I'll do it with the facts.  Meg and I are both extremely exhausted--physically, mentally, and emotionally.  The result of her day-long visit to CHOP was that they have diagnosed her as having Stage IV TTTS.  Typically, she would be in surgery the next day, but from their perspective, she's not a candidate for the laser surgery that could repair the blood flow between Sophia (Baby A - recipient) and Isabelle (Baby B - donor).  The doctor has given this diagnosis due to the fact that their placenta is implanted on the anterior of the womb.  It also wraps around her uterus in a way that, when combined with Madelyn (Baby C), makes it extremely difficult to access the umbilical cord, which they need to be able to reach to do the surgery.

They ended up providing us with three options--none of them leaving us with three healthy girls.  While not a direct recommendation, because, in the end, the decision is ours to make, the option that would give Madelyn the greatest chance at survival would be to selectively terminate Sophia and Isabelle.  All I can tell you is that I was none to thrilled with those options, as you can surely imagine.  We knew going into this that we may have some tough choices to make, but to be honest, the pregnancy has just been going so well, this just feels like a sucker punch in the gut.  I never really thought we'd have to make a decision like this.  Obviously, one of the options is to do nothing, but that option pretty much guarantees that both Sophia and Isabelle would succumb to the disease on their own.  Somehow, choosing to terminate them now, versus letting them struggle, actually reduces the risk to Madelyn.  Still, it just doesn't seem real and it's not a decision that we want to make.

Rewind about a week.  When we first found out that Meg may be diagnosed with TTTS, I started researching.  I found the TTTS Foundation and joined the TTTS Foundation group on facebook.  It's about 2300 members strong.  Since this is mostly a disease that affects twins, and there are more twins than triplets, it made sense that there would be a relatively large group.  I wasn't expecting this many people though.  I posted a question inquiring into anyone's direct experience with CHOP.  There were a lot of positive comments.  I also received a private message from someone who had been to CHOP and had a similar diagnosis to Meg, not with the exact same diagnosis, but basically, they wouldn't operate on her.  She then shared how she flew to Miami to meet with Dr. Quintero for a second opinion.  Dr. Quintero pioneered the selective laser surgery technique used to treat TTTS and the staging classifications that are used to diagnose TTTS worldwide.  He performed the surgery and her twins survived.  (Thanks Kristi if you're reading this)

Now, back to the present.  I'm not giving up on our girls that easy.  I realize that there's no step-by-step guide given to every doctor to treat TTTS.  I also realize that it's impossible for every doctor to be an expert in all aspects of their field, but that doesn't mean that we have to settle for anything less than best treatment for our girls.  I'm ready to fight for them and I'll go down kicking!  I want to be their dad more than anything else in this world.  We have so much love for these girls and they deserve the best chance to experience it.

As soon as I left the virtual meeting with Meg, Dr. Gallagher, and the doctor at CHOP, I immediately got on the TTTS facebook group and asked for Dr. Quintero's phone number.  Well, people never cease to amaze me.  The same woman who shared her story about CHOP and experience with Dr. Quintero saw my post, immediately replied, and actually called Dr. Quintero on his cell phone.  He called me about 30 minutes later.  I shared the results of CHOP's diagnosis and he asked, "How quickly can you and your wife be in Miami?"  The answer--tomorrow morning.  That's right.  As soon as I got home tonight, I booked flights from both DC and Chicago to arrive at the same time in Miami tomorrow morning.  We'll pick up our bags, get in a cab, and head straight to Jackson Memorial Hospital.  How amazing is that!?!  Within two hours of getting the worst news of our lives, one of the world's leading surgeons was calling me on my cell phone after hours telling me to get my wife to his office.  Amazing!

Now, I'm not advocating always second-guessing your doctors, but my heart was leading me in a different direction and that's where we're headed tomorrow.  Also, I realize that everyone's situation is different and that results may vary, but it's provided us with at least one more day of hope when just six hours ago, we had none.  I had no idea how amazing, and potentially life-saving, networking on FB could be.  Honestly, most days I use FB as a way to keep up with what's happening with friends and family, as well as for its entertainment value.  Today, I used it as a tool that could potentially save my daughters' lives!

From the bottom of my heart, I want to thank everyone for all of the phone calls, e-mails, texts, etc. that everyone sent today.  I also want to thank you for all of the prayers.  I don't truly understand how prayers work and whether or not your prayers will be answered by the survival of our girls or if your prayers are what led my heart to not give up and search for more answers and possibilities for our babies today.  Either way, I'm grateful to each and every one of you.

Well, my cab to the airport is coming to pick me up in about four hours and I haven't packed yet.  I can barely see the computer screen.  And I have no idea what tomorrow will bring.  The only thing I know for sure is that, in nine hours, Meg and I will be together again.  I'll get to kiss her lips, hug her belly, and hold her hand through whatever life has in store for us next.

I'll try to keep you updated as we know more.

Also, just so you know, I'm going to keep posting my favorite photos of my wife until I have anything baby-related to share.  It shouldn't be too big of a deal.  She's pretty cute :)

9 comments:

  1. Safe travels and please keep us updated! You have a lot of thoughts and prayers coming from down here in the South.

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  2. While I don't know your personally, please know that my family and I, are rooting, praying & adding your guys to our prayer lists. We think of you often. Safe travels!

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  3. We may not know you IRL, but know our family is praying hard for you, esp our 2 TTTS survivors. TTTS is an incredible heartache, but your perseverance is amazing. Best wishes on your trip to Miami.

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  4. Jeremy, I am speechless. Speechless at the options you were given, and even more so in regards to how quickly you were able to make new plans to be in Florida. THAT is perfect timing. I agree..FB can be a powerful tool. I'm so glad you and Meg are in it for the fight to see all three girls. It always astounds me how easily doctors suggest terminating babies as a solution. As if they were suggesting you pick two of the vegetables on your plate not to eat. Really?? I'm so glad you guys are headed to Miami. I think you're going to be in the right place at the right time with the right Doctor. I will be praying for you guys. Hugs to Meg. She's doing such a great job, I hope you help her keep up the fight! Good luck... We look forward to your updates, but take care of you and Meg and the girls first. ;)

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  5. Another prayer just said for you guys! This post was very emotional and I'm ever an optimist so I pray the Miami visit is nothing but success! You both are doing everything in your power to protect those little babies - good for you! Take care!

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  6. Hopped over from "Remember All The Way" and am so sorry to hear your family is having to go through with this. Keeping you all in my thoughts and wishing you all the very best.

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  7. I am friends with Debbie Demers, my name is Noelle and I just cried reading this....God has blessed you thus far and he will continue to hold all 5 of u in His mighty hands. Never loose ur Faith....Faith Hope and Love and the greatest of these r Love.
    u all will be in my prayers!

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  8. As promised the prayer warriors have been summoned... praying for all of you

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  9. It's not often you get to witness a superhero's coronation. I'm gonna burn a murderer here in a couple hours, I'm pleased at not reading your babies' names. God Bless You.
    Morgan & Brian's Dad.

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