Bathtime Surprise

We're starting to settle in...a little.   We're finding ways to get more sleep, mostly because we're trying to divide up the time so everyone isn't up all of the time.  Having my mother here the last few days has been a great help.  I took her to the NICU so the nurses could show her how to feed the girls since we haven't perfected the technique yet.  If you looked at the burp cloth after a feeding, some might actually think I was intentionally trying to feed the burp cloth instead of Sophia.  I'm not sure how so much of it ends up coming out the sides of her mouth, but the nurses do a much better job, so I thought they should show my mom the "right" way.

My mom has been tremendously helpful with meals and with bottle preparation and clean-up.  She's also taken over some of the transitional shift times like early in the morning, when Meg needs to catch-up on the sleep she missed at night and when I need to get ready for work.  She's also staying up a little later to give Meg a few hours to sleep on the front-end of the night shift.

My mom with Sophia


Eventually, we're going to get our girl to sleep at night and be awake during the day, but the NICU is kind of like a casino--there's constant stimulation and you have no sense of day and night--so, she's mistakenly got them turned upside down and doesn't yet understand that babies (parents) need to sleep between 11:00pm and 5:00am.  She'll get there though.

Over the last couple of months, the NICU has been giving the girls a bath on Saturdays and Tuesdays.  We took advantage of the coaching and started doing it ourselves a while back. It was our turn to try it at home.  Wow, did we fail miserably!  Our biggest lessons learned were:

1. Leaning over the normal bathtub to reach in to the baby bathtub and give a bath, kills your knees, even with a towel.
2. There's not enough room for two people to kneel next to the bathtub in the girls' bathroom without straddling the toilet from the ground with your legs (not cool when it's you that's doing the straddling).
3. Giving her a bath in the NICU was much easier than doing it at home.
4. Babies will not hesitate to poop in the water (I mistakenly thought they just peed in the water).
5. We need to try harder and be more prepared.
6. Babies will not hesitate to poop in the drying towel.
7. Babies will not hesitate to poop in the SECOND drying towel.
8. They look adorable when they're super clean.
9. You can give a 37-weeker a mini-mohawk when her hair is still wet.

 Well, maybe we didn't fail.  Heck, she's still alive isn't she!

Sophia, with a " Who, me?" look on her face after dirtying up the tub and two towels


One of the issues we're struggling with is how much tummy time we give her.  She definitely seems to be struggling with gas/poop and is much more irritated when we have her flat on her back or slightly inclined in the bouncy chair.  Our pediatrician told us it has to do with preemies at this age not being able to release their butt cheeks when they're trying to pass gas.  Apparently, they don't know that you need to let the cheeks go to let if flow.  She gets super tense and actually holds everything inside.  She'll learn. 

We noticed when giving her some tummy time, that she seems way more comfortable.  Maybe it's because her butt is up in the air and the gas is rising to the highest point to get out.  Whatever the reason, she loves it.  The dilemma we have now is that the NICU told us that they're too old to sleep on their stomach.  When they were younger, ~32-35 weeks, the nurses put them on their stomach to help with the reflux that both Maddy and Sophie were having.  There's a big campaign led by the NICHD called "Back to Sleep," which is meant to remind parents that you can reduce the risk of SIDS by placing healthy babies on their backs to sleep, not on their stomachs.  It's just our luck that our babies stay up all of the time when they're on their backs and really only seem to get restful sleep when they're on their stomachs.

So, Meg and I are going back and forth, weighing the risk of letting them sleep on their stomachs with the risk of them not growing because their not getting any real rest.  For the last day and a half, we've been putting Sophia on her stomach when we're awake and someone is watching her.  At night, she stays on her back and no one gets any sleep.  Meg took Sophia to her first visit with our new pediatrician yesterday and both the nurse and our doctor said that it was all right to use a movement monitor called Angelcare to safely allow her to sleep on her stomach and give us peace of mind.  I'm going to do a little more research before I feel comfortable enough to actually try it, but if it really does work, I may get my wife back!

Meg, "watching" Sophia in the morning.  The best moms can see with their eyes closed :)


The nurses decided to try and ween Maddy off of her last little bit of oxygen yesterday. When we called in to the NICU later in the evening, she was still handling it just fine. Meg is going to visit with Izzy and Maddy a little later this afternoon and, if Maddy is still off of the oxygen, they'll probably start talking about a plan to bring her home within a few days.  She's been episode free for quite some time, so there's nothing else stopping her at this point. Then we'll have TWO babies at home, possibly by Friday!

Dr. Liu called us yesterday to talk about next steps with Izzy.  Right now, she weighs 3 lbs 8 oz.  Ideally, he'd like her to be around five pounds before re-connecting her intestines, but if she a) starts dumping again or b) starts having trouble with her liver, he'll do the surgery sooner, but really wants her, at the bare minimum, to be at least two kilos or ~4 lbs 6 oz.  Also, the surgeon and our NICU docs really want to ween her off of her oxygen a little more before performing the surgery.  Lastly, they still need to do a one-day analysis on the bottom section of intestine, between the mucus fistula and the rectum, to make sure that the three perforations that were allowed to heal have all done so.

I can't help but look at these girls everyday and think about how close we came to losing them and where we would or wouldn't be right now if we had listened to the doctor at CHOP who told us our girls were too sick to save.  Honestly, it infuriates me, so I try not to think about it too often.  I just hope that other families don't lose their babies because they're not confident enough to go with their gut and get a second opinion.  I'll get off of my soapbox now, it just amazes me every time I look at them and reflect on how far we've come.  We are truly blessed.

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.