Episode 2

It feels like it has just been ten days of chaos like I have had to do so much, I have had running around, I haven't really had any downtime to just rest, you know, they had told me, after having a baby, you will get really tired, well I don't really have time to be tired.

I am living in Camden in the Ronald McDonald House in Camden, New Jersey, but it's 15 minutes driving distance, but it's not walking distance.

Everyday when I go to visit her, you know, I go see her, talk to her, try to calm her down 'cause she's angry; really angry baby, but it makes me feel better when I am there.

Alrighty!

That is the hardest, being the fact that I had a baby and had this big belly and now I'm over here, I don't have a baby in my hands, so it's hard.

[Crying] I think that's the hardest.

It was a lot of emotion to bringing a baby into the world and I think I speak for all of us, like it's an incredible privilege to be part of this very intimate, sacred moment; and these families are really special to us, I mean, they are so brave and they trust us.

Yeah, not being able to hold her, and you know like take her home, it's really hard.

[Crying] When your're a parent it's not about perfection, really, and we have all these patients and their child, they know even before they are born and there is something wrong with them, it doesn't matter; it doesn't matter.

♪[Music]♪ This program was made possibleIt looked like there was a tumor coming out from the mouth that my baby was going to die.

These are cells that are uncontrollable.

Surgery on your baby while you are pregnant is a very, very big deal.

There is an opening in the baby's back.

This couldn't be my baby you are talking about.

We have to make certain that they're candidates for the operation.

We wanted a yes or no, but they are telling us, it's we don't know.

The baby's condition is getting worse and I can't do anything about it.

That is my baby!

Yes.

Oh!

The mom admitted that she is severely depressed.

The relocation is going to be hard because...

He would like come when the baby is born.

And she has had suicidal ideations in the past.

She is very matured, 21 years-old.

So what other support systems does she have?

Nobody, just her and the father... Every year, approximately 500 families come to the center for fetal diagnosis and treatment for evaluation, for potential fetal surgeries.

About a 150 will undergo fetal surgery of some type.

She was kind of very overwhelmed and then during the consult with the psychologist and I she ended up passing out.

She comes back in on Saturday?

She comes back in on Friday.

We need to evaluate the family from every single angle.

So do they have a significant other who can stay here with them for the duration that they need to be here?

Because she does have a history of preterm delivery.

Do they have any issues that would enable them not to cope with a loss or... of the fetal surgery itself?

It's not about I want to do everything best for my baby which they all want to do.

It really is, are they able to carry out the aspects before and after fetal surgery, so that we can give them the best outcomes.

Did I miss you?

Did I walk right by you?

Yes, I was standing right here.

It's because you have on your clothing.

Oh yeah.

-How are you?

-Good!

Good!

So we just changed her trach, -and it went really well.

-Okay, good.

And then we should come back, I think we have a good surprise for you.

-Oh yeah?

-Yeah.

Okay.

Would you like to hold her today?

-I get to hold her?

-Yes!

Oh my gosh!

Yes.

So it's all up to the nurses, you know, when these things get to happen.

Oh baby!

-She is strong.

-She definitely is.

-She is so strong.

-Yes.

Oh my baby!

You are going to turn to listen to your mommy's voice.

Alright, now we are in the process of just waiting to see what the surgeon wants to do with her teratoma.

I can see what she has.

I see the tumor, but I know that she has more in there.

So my concern is that, how they are going to address that?

♪[Music]♪ ♪[Music]♪ She wants to open her eyes.

Here we go!

How's it?

That's perfect.

Good?

Okay.

It should be okay I mean I guess what we don't know is how she'll feed Right.

While feeding... the tongue, the only other issue with the tongue will be... with the lingual nerve coming out, it's going to impact the taste, the sensation to the interior two thirds of the tongue I really think that it's probably pushing the tongue on to the other side and not really penetrating... You can see where within the lesion and kind of at the most anterior point it looks as if the tongue maybe pushed over a little bit.

We don't see a great margin, kind of along the anterior lateral aspect.

It appears this kind of anterior component that's sitting up underneath the maxilla; and the maxilla... the orientation of the maxilla is abnormal, and looks like it's been really being modeled by this lesion.

-Thank you!

-Thanks a lot!

-Good luck!

-Thanks!

I do think that we have a good chance though of getting this out, and it's a long run for this mom, and I think she realizes it.

All right, sweetie!

She gets really angry.

Yeah, I know.

But she has got some spark and energy in there -so that's good for her.

-Oh yeah.

That's good.

I mean she got to hold her, which is great.

First time.

That's a special moment, special moment.

So we are just going to try to find a room so we can explain everything, that we plan to do on Wednesday.

Yeah, I think she is ready to be free from it.

-Do you think so?

-Yeah.

You have to stay agitated.

So our objective is to really, to try to take out all this tumor material and to leave as many of the normal structures intact.

But what I am hoping to do is to be able to peel it out from the under surface of the cheek and not have to take obviously any skin or any of the tissue on the outside where you can see that.

-Yeah.

-Right.

The tongue is very important.

I think we kind of... don't think about all the things that it does but one of the things that it's really important for is eating.

It's a pretty complicated process, to putting milk and food in your mouth and it getting all the way back and then safely getting it down in the correct pipe.

So a lot of the babies who have these oral or neck tumors might have issues with getting that process to happen right away.

And so there is the chance that we will be talking about continuing with the feeding tube for a longer time period.

I think it's just too early to know, but you sort of have to be prepared, you know the schema of things that we might have to deal with that.

The tongue is very important for speech, it helps us basically form different sounds, and so those are the other concerns that we have.

I know it's a lot of risk but... And we are thinking that it's going to be around 3 o'clock but you sort of know how the hospital works, right?

Yeah, I've got a hang of it now.

Yeah.

That's right.

-Okay?

-Okay.

I am excited, I know.

I know that she's going to be fine.

Everything is going to be okay.

We are going to work hard.

Thank you!

Thank you guys!

Thanks!

The magnitude of these events that the parents go through, I mean, it really can make you think deep, right?

It can raise you to new heights or it can... or it can crush you.

So I think we see a lot of incredibly strong families but that just surprise you, inspire you, you know, she is a beautiful girl, and she's got this beautiful little girl and you just want it all to have a happy ending.

Oh boy!

So Bobby and Shelly are coming back today to have a repeat MRI, because the first time that we saw Shelly, her MRI did not show definitive hindbrain herniation, which is one of the prerequisites for qualifying for an utero spina bifida repair.

This whole month we have been trying to not make ourselves think, just see what we get as we get it.

Yeah.

We assume things will progress enough to justify, but we also remained aware that it might not, and we might be back home on Wednesday after packing up all our stuff and coming down, but, if that's the case then God doesn't want the surgery to happen.

Depending on the results of this MRI totally changes what our life will look like.

Your 8:30 patient, she has arrived, yes, Shelly Ross.

We tried to wait till today to form any views of what the future might look like, because today forms it.

If it's yes, then we take that fork in the road, if it's no then we take that fork in the road and the journey continues.

It's their call.

We have had couples where we have done repeat imaging and there was no progression and things did not change.

♪[Music]♪ [Hospital sounds] [Beeping] Shelly, are you doing okay?

Yeah, I am good.

Just try and keep nice and still for me.

Well what do we offer the mother who is carrying a fetus with spina bifida, who proves to be a fetal surgery candidate?

We hope that we are going to repair the spina bifida before birth.

We will permit that child to avoid the consequences of hydrocephalus.

We hope that that will enhance the child's mental development.

We hope that that will prevent the child from acquiring one of those shunt tubes to drain fluid from the brain.

We hope that this intervention will have an impact on the baby's ability to eventually walk, have a more robust, more highly functional life.

That's what we hope.

Baby is moving around a little bit, okay?

So we are playing a little bit of chase the baby.

Okay.

-How did it go?

-It was fine.

She was moving a ton so they had to re-do a bunch of pictures, so hopefully they got what they needed.

Let's see.

We can see what's this baby is doing, -see it's very active baby.

-Yeah.

And the baby can swallow so his brain stem function... Looks okay.

Looks okay.

And this little dot is actually a little bone and we can see there's a hindbrain just goes down a little bit.

So, so much is the same as before but it's...

There is some progression.

With some minimal progression of the hindbrain protrusion done.

Mild hindbrain herniation with obliteration of the fourth.

Yeah.

You can see it, yeah.

Can I squeeze next to you and sit over here.

Yeah.

Don't spill it.

I will not.

[Footsteps] Are you looking for NSA?

-I am.

-So are we.

I got dibs.

He's a hot ticket.

How are you guys doing?

For Ms. Ross, for her MRI, the hindbrain is down a little bit further, the decreased extra-axial CSF spaces.

I think that she is probably a candidate, I just want to confirm.

Even if there's a little fluid there.

I just want to make sure, you are good with that before I go and talk to them.

Good!

Thanks!

Good!

Excellent!

Thanks Chief!

Okay, go ahead, see you guys.

I'll put my glasses on and pretend like I am smart.

So we just need to go and get our patient care coordinator.

We will sit down and meet with the family.

Glad you guys had a good trip in.

Just was down talking to the neuroradiologist and to Dr. Adzick.

So it looks like things have progressed to the point where there is officially hindbrain herniation abdomen on the MRI, so if this is the route you still want to take, having a fetal surgery is on the table.

Okay.

I think that's probably the route we want to take.

Yeah.

That's what I think we had lots of time to think about.

You guys are ready.

You have been ready, right?

We had the options already mapped out since like, you have already told us, check, and we have already decided like if, then, go, you know and we have already, go, yeah.

Excellent!

Here we go.

But now it's like, okay, we know we are a candidate, we know we have decided, if we are candidates we are going to go for it.

So now you are sort of wrapping your mind around, but there are still risks, you know, it's not like, this is a cure-all, there is still risk to the baby, there is risk to Shelly, so, high risk, high reward, but still risk.

After today, Shelly and Bobby are not going to go back to their home until they bring a new born home with them.

Realistically we are looking at a good three to four months.

Why is that, because we watch him like a hawk.

We do not want the mother who has had fetal surgery to go into labor because there is a fresh uterine wound that can break down and the uterus can rupture, very rare, but it's of great concern to us and the baby can be lost or she can have complications, bleeding and so forth.

I always talk to families about that they have to really give consideration to this really long-term commitment of relocation, it means not sleeping in your own bed, making your breakfast in your own kitchen, taking your shower in your own bathroom, all the comforts of home, you are kind of giving those up.

when mothers stay here, most op, generally they have to have someone, usually a family member with them 24 hours a day, seven days a week, and if that can't be arranged then we just can't do it.

One, two, three!

Oh gosh!

Today is the last day I can walk out doors.

You want to go outside for a walk?

Today is the last day I can pick up Chel and chase him around.

Let's go for a walk.

Oh!

I think that will be hard through the holidays and through a cold winter to have to kind of be stuck on bedrest and at the hotel together, that will be a lot.

Oh poor guy!

He will be alright.

You are the one... you are the one having a surgery.

I know, but I am feeling bad.

So the patient is Shelly Ross.

She is a 26-year-old G3P1011.

It is an L2 bony lesion, vents are nine and nine.

there's no talipes good lower extremity movement... -Are you doing okay?

-Uh-huh!

...and the baby weighed 614 grams today and they are good to go.

-Hi!

-Hi!

Going to the SDU?

Thanks!

Even at this point they have three options, right.

She could end the pregnancy she could have an abortion, so that's option number one.

Option number two, wouldn't involve in fetal surgery but it would be to continue the pregnancy, you have a new born Myelomeningocele surgery done after birth.

Or the third option is to have fetal surgery which involves quite a bit.

That can be an agonizing choice in some cases.

How are you doing?

I am good!

-Nervous?

-A little bit.

Don't you?

If you weren't we'd ask for a... A psyche work.

Yeah, no doubt about it.

The last step prior to embarking on this sort of voyage is it has to be very candid discussion about the operation step by step, even though they have heard it multiple times before.

It has to be one more play through it.

Through this deep general anesthesia, your blood pressure can... As we want them to have a mental image of what they are in for.

Let's talk about potential complications... You're telling the truth, what it's going to be like, I hope it doesn't come off as a harsh; I hope it's truthful and I hope that they understand that we care for them, and one of the ways we care for that is to be blunt.

It is possible that we could do the operation and the baby could die during the operation?

You can also deliver prematurely, if you delivered very prematurely in the first few days we can lose the baby due to immature lungs.

First two days after the operation is sort of like an intensive care unit environment, nice room, but very little privacy folks coming in and out.

I think you got it all.

We are going to take great care of you.

When I said, we are going to take great care of you and when I looked her right in the eye she has to know that we are going to do our best, no matter what it takes, that's important, she trusts us, the father trusts us, and the family trusts us.

It's a tough decision that's got consequences either way we look at it.

At some level we've come to peace with the worst happening, even though if it happens it will be heart wrenching and terrible and a long time to get over it, but we are aware of it, we are not ignorant of the fact that that's a real risk.

But she knows that tomorrow the battle starts; and it's a battle, no question about it.

♪[Music]♪ Daddy is going to meet us at the restaurant.

Okay.

So!

Is this the wrong seatbelt?

No, it's all good, Finn.

How can it protect me?

It is protecting you.

How?

Because that's just how a seatbelt works.

[Singing] Stop!

Chaos!

Yeah.

All right, Finn, what you're going to eat?

You're going to eat a burger, or you need a sandwich, what are you going to have?

[inaudible] I think that they only serve liver and onions with Brussel sprouts here, so I hope that's good for everybody.

Where the heck is we we going?

We are going to go right here.

What the heck!

What the heck!

We are human.

We are sort of normal people.

We just do different things at work.

Good morning!

Hey!

You survived in New York?

Yeah, it was awesome actually.

Actually this is funny, I have to show you this, this is Finn one day and the last few weeks, trying to get him to school, he will be four in a couple of weeks.

I am getting into the stage of kids have projects and it will be like it's due tomorrow mom, I will be like, so last night we are like building houses for a tsunami model, I wanted the easy fix, I am going over to Kmart.

I saw the movie, 'Man of Steel' over Thanksgiving.

You did?

Where's her placenta?

-Posterior.

-Okay.

♪[Music]♪ ♪[Music]♪ You can change your mind, and I have said it expressly, you can change it prior the night before or the morning of, we will appreciate as soon as if you decide to change, but let us know, but you can decide then.

So... but usually once they get to that stage they are sort of in the shoot to be launched.

Thank you for your promises and your love and hope we have in You Jesus that we cannot fear because we know You are with us and just pray You give Shelly peace and rest and do the same for the baby and just protect him Lord from any complications and yeah, just get them out of it safely, living to the powerful and in Jesus' we pray, Amen!

Amen!

♪[Music]♪ ♪[Music]♪ She is going to be wheeled into the operating room by 7:30, and because we have such a skilled team, there will be three pediatric surgeons, one pediatric neurosurgeon, one or two maternal fetal medicine specialists, scrub nurses, two circulating nurse, two anesthesiologists, a lot of expertise all brought here on Shelly and her baby.

You have all the meds, baby shots, resuscitation meds?

equipment sterile Okay, starting.

We're going to have her uterus exposed so we can see it.

-So it's thick right there.

-Yeah.

She will have an ultrasound to look at the baby's position.

We have mapped the placenta.

It's right there.

And so I am creating the window that shows us the best place to make the initial incision, the part of the uterus that's free of fetal parts, free of umbical cord, free of placenta.

I don't need this, [inaudible] please.

The pregnant uterus is the most blood supply rich, the most vascular organ in the human body, and if we simply cut the uterus with a knife, the mother would bleed to death.

We use a uterus stapling device that quickly and bloodlessly incises the uterus and keeps the membrane surrounding the baby tacked up to the muscle layer of the uterus.

And then once we open the uterus, we see the baby's back, we see the baby's bottom, we see the Myelomeningocele sac.

We don't see anything else in the baby.

We give the baby a baby shot, we give the fetus a shot of narcotic and muscle relaxant.

And that's just to make certain that the fetus is anesthetized, even though the mother is under deep general anesthesia, which anesthetizes the baby, we don't want the fetus stressed, because if you stress premature babies who are having operations, then the outcomes aren't as good.

Dr. Sutton and a neurosurgeon here will come in.

The baby's own tissues are closed on top of this exposed spinal cord in a water tight manner so amniotic fluid can't get in and cerebrospinal fluid can't get out.

Very intense!

♪[Music]♪ ♪[Music]♪ That's total focus, I mean time is suspended.

Time is suspended.

There is no outside world.

Shelly Ross' operation went great.

Operation took about 54 minutes, which is quick.

Which room?

One of the big key factors is the time of the procedure.

Thanks Ms. Deb.

You know that when you finish the whole procedure in less than an hour, that that's how well things went, just about as smooth as things can go.

Baby came through flying colors, heartrate looked great the whole time and Shelly did fantastic.

Everything is fine, honey.

Everything is fine.

Yeah, everything is fine.

Get some rest sweetheart.

The next 48 hours are really crucial and we have to always have our guard up because we don't know what's going to happen completely.

Puts that level of uncertainty that we have to live with, so we have to sort of live the question about how well she is going to do by just going through it.

Anything else?

What's in that box?

In this box, there are loupes, these are magnifying loupes.

They magnify things by a factor of 4.

I also have in this box this little car here, which is a little Thunderbird, which is just a car that I actually had in high school; they learned about that and they would play in the operating room and they will have fun, fun, fun till daddy takes the T-bird away.

So this is a little... which has been there for a while.

That reminds me of a nice event and I smile about it, and it certainly helps relieve the tension level.

♪[Music]♪ They're really moving this morning.

Yeah.

Something's going on over here.

The bigger one stays, but the little one, she has all this room over here and they stay right next to each other.

Anything from the old house that you like that you want to carry over?

You have this future that you think is going to occur, and you plan for it, you prepare for it.

Pool, hot tub.

Your hot tub.

The buyer says the pool room could have a TV in there.

You can dream, you dream big, right?

Exactly.

They told us right away in our first ultrasound that it was Twin-to-Twin Transfusion Syndrome; they knew, they told us, and we know of a really good hospital that specializes in treatment, and they got us connected with CHOP.

How about like a cul de sac, or a dead end street?

At that point you don't really know what's going to happen and we just have to, you know, focus on the things that we can focus on and that we can affect.

That round out your list?

Only one page of stuff.

Well, this is a new house, this is your dream house, this is what you're looking for.

Yeah, we have this issue, but I think everything is going to be fine.

Hi!

Good morning!

Nice to meet you!

I am Stephanie.

Hi Stephanie!

Nice to meet you!

All right, so it begins.

I know.

I didn't have my first ultrasound till I was 17 weeks pregnant.

There were two babies all of a sudden, but what are we going to do with two kids, we only wanted one?

We were very much in shock and then the technician left the room and we're so happy, and trying to think, oh, we've got to get another stroller and we've got to get another bed, and this and that, and then the technician came back in and she said, well, there is a problem and that's how we learned about the syndrome.

Tina and her husband were referred to us specifically because they carried a set of twins that were sharing one placenta, and that's what sometimes results in twin twin Transfusion Syndrome.

You can actually have the artery from one fetus, instead of staying on its own side and traveling with its own vein, actually crosses over and communicates with the vein from the co-twin.

So in essence, it's the donor that's transfusing or shunting blood away from itself towards the recipient through these artery to vein communications.

The recipient fetus now has this extra work to do.

The heart starts to work harder and that kid is at risk for heart failure in utero.

And what happens with the other twin is no less concerning; growth is slowed down, it's an incredibly unstable situation for the twins.

The cases are typically done first thing in the morning; they're actually done right across the hall in our special delivery room.

When patients are referred to us for evaluation, based on the severity of Twin Twin Transfusion Syndrome, what we offer is a therapy known as a selective laser photocoagulation.

This is a procedure to directly visualize the artery to vein communications and we can actually use a laser fiber to almost sort of spot-weld and we actually disconnect those communications, and as a result, even though the twins are still sharing one placental mass, we can comfortably say that we have created two separate circulations for these fetuses.

My name is Debbie, I am your sonographer to look at the babies' hearts.

Here, this is ultrasound technology, but our priority, our focus is going to be to look at the hearts of babies, both of them, so there is different ways of grading twin twin transfusion and we're going to look at the cardiovascular findings that most will affect the larger one.

Yes.

Okay?

That's good.

Just going to get a lay of the land first.

Brion told me that they're girls.

Yes.

I see.

And A is the bigger one.

You're supposed to hear the heartbeat and see the babies moving, and they have the screen up on the ceiling in front of you so you can see everything, and everything was quiet.

You know, I am looking and waiting to see them.

Hold on one second, I'll be right back.

So my technician excused herself.

I don't like it when they don't say much and then they leave the room.

They always come back with bad news.

And it felt like an eternity until the doctor came in.

I received a text, and as I was approaching the ultrasound suite I met the technician in the hallway and she informed me that unfortunately she could not identify any fetal heartbeats.

And immediately my heart sank, because I knew that I had to walk into a room and talk to a family that I had not met, who had come here with hope and expectation that they were going to go home with two healthy babies, and I had to be the one to tell them that their babies had died.

So unfortunately, what we're seeing in the ultrasound is that for both the babies, there is no longer any heartbeat.

-For both?

-Yes.

I could have sworn I felt them moving.

I believe that.

I believe that.

I do.

I believe that.

I believe that.

[Crying] They were just there.

I know.

Brion felt them moving.

You did?

I know.

I felt them moving right there.

My babies didn't even have a chance.

Just in a week I knew about them and they were gone.

That's the way Twin Twin Transfusion Syndrome works.

Very sudden.

Very quick.

And we talked about what had happened.

One of the most dangerous aspects of Twin Twin Transfusion Syndrome is its unpredictability.

This is a family who had been recently examined, so they just had a recent ultrasound which confirmed that both babies were still alive.

And it doesn't happen very often, but it is something that does happen with Twin Twin Transfusion Syndrome, where we can get a phone call from a referring physician, have the patient come the next day, and unfortunately both babies have already died.

And it's an incredibly heartbreaking scenario.

We went home, and four days later I gave birth to them.

And I couldn't decide; I wanted them out.

Then the day before we left I didn't want to...

I don't want to go to the hospital because then they would be gone, gone, and I wouldn't have them with me.

So it was the three of us for four months, and it's not supposed to end like that.

You're supposed to have your children with you.

♪[Music]♪ We named them Hazel and Olive after trees; the hazelnut tree and the olive tree.

Our little trees.

Definitely the hardest thing we had ever gone through, together or separate.

Was that fun?

Yeah.

Was that fun?

[Beeping] [speaking Spanish] I don't know, I have no idea what's going to happen.

And it's going to be a long surgery, very long.

I will have her soon.

She will be out soon.

I just have to be strong, stay strong.

You can tell by looking at this mom that she has got that spark that she is going to fight for her child and that's a good sign.

I think we see it time and time again that these... these parents really put their heart into their children obviously, and they really fight for them.

So these kids, they... they're able to achieve almost the impossible.

It's okay honey.

She is beautiful!

She is like this beautiful baby, and it's just, this thing that she has there, but soon it will be out, and they're going to do a great job, I know.

Time-out for safety here.

This is a baby girl, MRI number 55658473.

Here for microlaryngoscopy and bronchoscopy.

Resection of oral cavity, oropharyngeal tumor, partial glossectomy, possibly, possible reconstruction.

Let's move this back under her head so she's supported here.

Initially, you're quickly looking around trying to delineate what's natural anatomy and what's tumor; where can we separate the tumor?

It's very hard and fixed because it's got a lot of bony components here.

I am not going to tug that too hard.

The teratoma, it's quite an interesting tumor, because sometimes you can find hair or teeth or, you know, miniature bones that resemble other bones in your body, or muscle or fat or nerve issue.

I mean, they really can be a mixture of all kinds of tissue.

Because it's hard and I don't think that that's a normal bone there.

Drill please.

Bring out your inner dentist So we took a drill and actually just took off a very fine layer of bone there, just so that there wouldn't be any rests, or little nests, if you will, of tumor cell that could potentially come back.

Because I am getting a little bit of noise from both sides, they're in but the impedance is a little bit high.

We had somebody basically following some of the cranial nerves, and one of the ones that I was worried about was cranial nerve 12, which helps move the tongue, and so he was watching us as I am dissecting if I accidentally kind of bump up against the nerve, he will say be careful, the nerve is firing.

So I think her bleeding is under much better control.

-The mass is out.

-The mass is out.

We should hopefully be finishing up very soon.

You're alright sweetheart.

Are they finished?

There's room for her tongue now.

Yes.

Alright, time for bed.

So I didn't go.

Yeah, I missed it.

Apparently Henry was crowned Homecoming King of the lower school.

Nice!

That's awesome!

And I missed it.

But here's a picture.

That makes you royalty, right?

That makes you royalty too.

-The royal mother.

-Exactly!

The royal mother.

The queen mother.

Do you want me to get mom and just have her go with us?

Sure!

That would be great!

-Hi guys!

-Hi!

She is all finished.

So she is coming around the corner, you want to see her?

Uh-huh, yes.

Everything is good.

We'll tell you all the details downstairs, okay?

Aw, my baby!

-She looks great!

-She does.

She looks great!

Dr. Javia got it all out.

Oh my god!

You know, at this point you just need to leave that bolster and pipe for five to seven days.

It is held in with those black sutures; one of which is going and tethering the mandible, so you're not going to be able to open the mandible up very much.

No instructions as far as positioning or anything like that for her.

No.

Just standard things.

I would treat her like a trach patient.

-Thank you!

-Great!

Thanks!

Alright, good night!

That was intense.

It is intense, yes.

So as far as the resection goes, everything went really well.

We peeled the tumor off.

It looked like it was on the alveolus, that's the ridge where the teeth come out of, but kind of get around the tumor back there.

It actually went all the way back near what we call the station tube.

The station tube we normally don't see through the mouth, but for Lilly we could see it because she doesn't have a palate there.

But no under the tongue?

No, surprisingly we were kind of falling it back and it didn't... there was some swelling and stuff down there, but... She just moved it so well down there, all this time, and her tongue.

I never thought it was under her tongue.

Yeah, it didn't seem like there was any obvious extensions there.

That's really good.

That's good.

That's great.

That's great.

Thank you!

Okay, told you everything was going to be okay.

-All right!

-Thank you!

See each other later, okay?

We need a dose of Lesly everyday.

Yeah.

[speaking Spanish] The longer that you do this, you figure out some method of compartmentalizing.

So okay, I am going to transition from this part of my world into this part of my world and not let the two interfere with each other.

-Have a good night, Tony!

-Okay.

My mother-in-law had like a nervous breakdown this morning because I had a whole like list of, you know, the big guys have to be to school at 8, Amon's lunch is in the refrigerator, his snack in his backpack; Finn has to be to school at 9, don't forget his class snacks on the cupboard, don't forget his after school party is at 11:45, pick Amon up at 3:15, Noah's game starts at 4:15, you know, all this whole list of whatever.

She about had a nervous breakdown.

She is like...

I said, Dana, this is everyday, this is just how it is here.

You have days where you tell parents terrible news over and over and, you know, it's devastating to them, you know, but I can't go home and then take that end out on my kids that just, you know, I told three couples that none of their babies are going to survive.

You know, I can't take that home with me and sit at the dinner table with my kids all sulky and sobby, because that's not what they want from me.

There's Finn.

Hi buddy!

Oh!

How are you doing, player?

You're ready to do some big playing?

You're going to hit some home-runs?

Uh-huh.

Finn's team's name is Bees, very ferocious.

[Snorting] Tickle, tickle!

♪[Music]♪ Baseball ready!

[Cheering] In between innings, pit stop, there we go, get out there!

♪[Music]♪ ♪[Music]♪ Everyday I go to the hospital, everyday.

Sometimes I feel like I don't even know what day it is, like Monday, Tuesday, Wednesday, everyday is the same day to me.

Nobody is here with me.

My mom has to work.

My dad has to work.

So I understand that they can't be here with me.

Sometimes I feel down because yeah, you know, I feel older and I feel like, oh my gosh, I feel like 40, but then I think like I need to be grateful, you know, for all those other moms that don't have hope, at least I have hope.

So that's the most important thing.

And I am just grateful that she is alive, so nothing can bring me down from that.

I just have to stay strong for my baby.

♪[Music]♪ It's been two weeks since I had my fetal surgery, been on very strict bed rest since then, pretty much on the couch or in bed, and that's it.

My goal after getting the surgery is to stay pregnant as long as possible; I want to make it to 30 weeks.

Even on bed rest I've seen people go onto preterm labor.

After moms undergo the... the prenatal surgery there's a certain subpopulation of women who will deliver their babies extremely prematurely, less than this 30-week mark, so you're hoping, please let me be the one that goes to term.

I feel very kind of raw and broken, like I am just sitting on the sidelines, which I hate.

Dad!

Bobby, now that Chael is back with us, he has to do everything for both of us.

Okay.

I think the hardest thing about this is that I can't get to a place where I can wrap my mind around it.

She has spina bifida, but we don't know what that's going to mean; she may never walk; she might.

She may never have function of her urine and bowels or she may.

It just feels like too much.

Even right now I just feel the sacrifice and the weight on our marriage and on Chael.

Give him some of the tomatoes first because if he eats the blueberries he's not going to want them.

He is going to eat whatever I put in front of him let's be honest.

Gosh, I hope we made the right decision.

It's driving her nuts.

Take someone who is used to going a 100 miles an hour and you literally just stop them dead in their tracks, I mean it's not that I can even say like it will be great in the end, you know, but we just... because we don't know.

Are you going to behave?

Are you enjoying your lunch?

I think the emotions that Shelly has kind of run the gamut of since having had the fetal surgery is very common for these women.

You kind of realize that, wow, what did I get myself into, I am too far into it now to turn back; it's just the realization of this is a lot harder than I ever thought it was going to be.

You're spending a lot of time in a very confined space with one person, and all of this, you know, kind of ruckus is going on in your head at the same time, and we tell them, sort of, you know, couples go through this, it can take its toll.

He should be tired.

If it's a married couple coming in I would tell them that they truly need to be working on their marriage while they are in this position because it will rip you apart; it will rip you apart.

She's a little fighter.

I know.

Just don't kick your way out of there too soon, baby.

I know... take it easy.

♪[Music]♪ Twice Born is available on DVD.

To order, visit shopPBS.org or call 1-800-PLAY-PBS.

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♪[Music]♪