Conquering Cold Feet

We're up early this morning.  Not because the sun is creeping through the windows or because the birds happen to be chirping a little closer to our quiet home, but because today, Isabelle is going in for surgery and needs to be at Comer Children's Hospital by 6:00am.  By the time she's done, she'll have one less tube on her face, a new tube on her belly, and a device at the top of her stomach that will help control her GERD.  She'll be the proud new owner of a G tube and a Nissen.

I'd be lying if I said that we weren't having cold feet about the surgery, but I think we know in our hearts that it's the right next step for her.  We've written extensively on how we got to this point and what eventually led us to this decision, but if you're just reading this blog for the first time and are looking for the short story, well here it is.

 Isabelle was born with several intestinal perforations.  She had surgery within the first couple of weeks of her life that created a situation which required her to be intubated for lengthy periods of time and kept her from feeding orally for quite some time.  Also, she was born at 1 lb 7 oz and her lower esophageal sphincter (LES) had almost no tone, meaning it wasn't keeping the food down that we were feeding her.  We believe that most of this was caused by prematurity and IUGR due to Twin-to-Twin Transfusion Syndrome.

As she healed from the surgery, she was eventually allowed to try to eat by mouth again, but demonstrated some oral aversion and seemed very uncoordinated with her sucking, swallowing, and breathing.  She made some improvements while still in the NICU and eventually came home without oxygen, but with an NG tube.  She really seemed to struggle with her oral feedings, even though we were receiving input from multiple doctors and therapists on how to potentially treat her eating issues.

Eventually, we came to the conclusion that she needed to be back on oxygen because she was, in essence, trying to run a marathon while eating.  She had become so used to it that it didn't bother her, but did affect her eating. 

So, for the last couple of months, she's had both the NG tube and the nasal cannula on her face 24 hours a day. On the positive side, she's been gaining weight, good weight.  On the negative side, we haven't really been able to increase her daily volume in quite some time, she regularly spits her food up beyond what you would be used to seeing, her reflux is still causing her pain, she spends more than half her day upright either sitting in her bouncy chair or the sitting still in the swing.  The latter has resulted in some physical delays that keep her from catching up to her sisters.  Essentially, we feel like it's starting to affect her quality of life.  If she has it her way, she'll be on the move soon and the last thing we want is for her to be tied down by tubes.

The Nissen will be placed near the LES and will let food down, but not let it back up.  We still need a way to feed her when she can't finish her bottle by mouth, as well as the stomach will need a way to vent its gas when the Nissen won't let it come back out.  This is where the G tube comes in.  So, they kind of go hand-in-hand.  Not everyone who gets a G tube needs a Nissen, but logically it makes sense that most who need the Nissen will need a G tube.

I promised the short version, so I'll leave it there.

The surgery isn't supposed to take very long and will be performed by the same surgeon (who we really like) who did her previous bowel surgeries--Dr. Liu.  They told us to expect her to stay in the hospital for three to five days.  Meg will stay for the weekdays and then I'll swap with her on the weekends so she can see the other girls.

I know that as her parents, we'll never forget these experiences and the sometimes heart-wrenching decisions that accompany them.  It's my hope that she grows up not remembering these early painful days and that one day way off in the future, I'll be able to explain to her where her scars came from because she really doesn't remember herself.

Please keep us in your prayers today.  We're not expecting anything to go wrong, but it's another surgery and there's always risk, especially when you go under anesthesia. 

I'll try to write an update post when we know how the surgery went.

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 :)

A day with CHOP (and an ask for a prayer)

It's 8:50am ET on a Thursday morning and Meg and one of her moms, Jo Anne, have already been at Children's Hospital of Philadelphia (CHOP) for almost two hours.  Based on what Meg told me, as well as what some of the other triplet moms shared, who've had experience with CHOP, she'll basically be in appointments all day until around 3:30-4:00pm.  At that point, a doctor will come in and very informatively and bluntly (which is a good thing), give us a formal diagnosis of her TTTS and discuss the different treatment plans.

All in all, this is a very important day in our lives, and more specifically, the lives our girls.

Meghan went to her weekly "high-risk" doctor, Dr. Gallagher, yesterday and there have been some changes in measurements over the last two weeks.  Sophia (Baby A) and Isabelle (Baby B) have too much and too little amniotic fluid, respectively.  They measure the largest vertical pocket of fluid in each sac as a way to help diagnose which stage of TTTS Meg currently has.  The goal is to have between 3-8cm.  If you have more than 8cm, which Sophia has (8.8cm to be exact), that means that she's getting too much blood and producing too much urine.  Depending on the severity, it can lead to prenatal heart failure.  If you have less than 3cm, which Isabelle has (1.1cm to be exact), that means that she's not getting enough blood and resources.  When that happens, you typically have difficulty seeing the bladder on the ultrasound if the baby isn't producing enough urine.  Well, they can still see Isabelle's bladder, so that's a really good thing.  Also, for the first time, there is starting to be a larger discrepancy in the relative size of Sophia and Isabelle.  They've always been a few days apart the entire pregnancy, but it looks like that gap is widening.

Let's not forget about Madelyn here.  Her results were normal.  Having her own sac and umbilical cord means she doesn't have to worry about anything like TTTS.  Obviously, when there's something going on in the belly that's not right, it means everyone's at potential risk.  Specifically, for pre-term labor.  The good news on that is, Meg's cervix is still really long.  Around 20 weeks (Meg will be 19 weeks tomorrow), they really start actively monitoring the cervical length.  They checked hers out yesterday and she's showing no signs of shortening.

I'd be lying if I told you that I haven't been thinking about today's appointment almost every minute of the last week.  My days are packed at work.  So, I'm having no trouble keeping myself busy, but I definitely find my mind wandering during my meetings and thinking about my wife and our girls--all of the time.

I hope they have strength.  I hope they have fight in them.  I hope they realize that they have a huge web of family and friends that want nothing more than to see their cute baby faces.  I hope they know that they have two parents who are willing to do anything and everything to make sure they have best chance.  And, I hope they know that even though we've never met them that we love them more than anything else in life.

Now, I'll be the first to admit, it's been a while since I've prayed.  Honestly, I think the last time was when I prayed for my friend, Errick, who is battling cancer.  Meg reminded me this morning that you can't just pray when you want something.  Well, I prayed last night and maybe I need to take time each day to do so if I want them to be more effective.  So, just in case my prayers go unanswered because I don't pray everyday, if you're the praying type and you have a few extra prayers to spare, please send them our way.  I would definitely appreciate it.

With all that's been going on the last two weeks, there haven't been a lot of new pics.  Believe me, I'll make up for it when the girls get here.  So, I'm sharing one of my favorite pics of me and Meg.  I'll make sure to keep you all updated as we find out more.