Friday, July 31, 2009

Day 17-Girding Our Loins (and Having a Tubby and a Binky!)

Not a pretty picture, I know, but it's about where we're at.
We had a face-to-face meeting with Dr. Jennings to flesh out the details of Rafa's airway repair surgery, and we as a family feel much more calm and sane about what's going on Tuesday. Here are some more details:

Dr. Jennings has performed surgeries similar to Rafa's many times before, even if the extenuating circumstances are different.

"Moving his heart" has already happened! During his original repair surgery, Rafa's heart was moved from the left side to the right by his surgeons, which is a bigger deal than what they plan to do on Tuesday. Dr. Jennings will only be raising his heart off of his right airway, not shifting it from one side to another.

No word yet on what will be used to reconstruct the airway--could be Rafa's own tissue, could be cow heart. Who knows?

The surgery should take more than half the day on Tuesday, which is why Dr. Jennings reserved the OR for so long. According to Laurie, our social worker friend, surgeons have a habit of doing this to hedge their bets in case some portion of the procedure takes longer than anticipated.

The risks: largely bleeding-related since Rafa's on ECMO and receiving blood thinners. Any other risks, Mommy, Daddy and Grandma Sherrie didn't want to know about.

Rafa will be far more stable undergoing this surgery on ECMO as opposed to being on a ventilator, since his airways won't be asked to heal and work at the same time. According to the Great Ken, our ECMO god, many kids who need airway reconstructions are put on ECMO specifically for that reason.

Last but not least, Dr. Jennings feels Rafa has a good chance of making it through his surgery. And so do we.

Please concentrate your thoughts on this being the last great hurdle our baby love has to overcome and that he can slowly and surely advance through his recover.

Now for some fun stuff!

Mommy changing a poopy dipes!

Wiping off! (That's Nurse Melissa's arm on backup)

Wonderfully charming toxic waste

Fresh, dressed, and ready to party!

Giving a binky a go

Day 17-Going Into Battle

It occurred to me that I left out a very important piece of information in yesterday's post: Rafa's surgery is scheduled for next Tuesday, his three-week birthday.

And if I may trouble you for one last favor--if you haven't already, please tell everyone you know about Rafa's tale and ask them to dig deep and raise him up. If prayers aren't their thing, that's OK. We'll take any kind of concentrated goodness people can muster. Even if they just chant Rafa's own prayer:

"I may be small, but I am strong. Everyone is cheering for me."

So many thank-yous...more later.

Thursday, July 30, 2009

Day 16-There's still hope, but it comes with a price...

Had a lovely and largely quiet day with Rafa. Mommy shared Leo the Late Bloomer with him, care of two of his angels from the great state of Maine, and both very much enjoyed the quality time together. Rafa also seems to enjoy his Sleep Sheep, which came in handy this afternoon as Mommy tried to calm him in the throes of a particularly noisy time when a new patient was brought in to be his neighbor. Little Man didn't get much in the way of sleep last night, and was apparently wide awake, schmoozing the ladies (a.k.a. Nurses Diane and Kristen).

As far as poking and prodding is concerned, Dr. Alex put in a new catheter and Dr. Chen attempted to put in an arterial IV to replace the one in his umbilical cord that reads his blood pressure. Pretty low-key, given the prior 72 hours.

Here comes the heavy stuff...

Dr. Jennings, who promised us a plan yesterday, delivered, scary though it may be. Turns out that a portion of Rafa's heart is sitting on his right bronchial airway, which is what is preventing him from inhaling and exhaling air on his own. We didn't know this until afternoon, so imagine our shock when we heard how Dr. Jennings plans to resolve the situation:

1. Bronchoscopy to confirm placement of heart and airways
2. Reconstruction of airways
3. Shifting of heart and aorta to relieve pressure on right airway

This is evidently a very slow, methodical procedure that involves many hours, which is why Dr. Jennings has reserved the OR for the entire morning/day (can't remember which). There are certainly dangers and risks involved, but we have no other choice.

Except to breathe and pray.

Please join us in our efforts--this brings our commitment to his care and recovery to entirely new heights, and we need to stand on your shoulders to hold our boy in the light.

Wednesday, July 29, 2009

Day 15-"Charlie, do you know what happened to the boy who suddenly got everything he always wanted?"

"He lived happily ever after."

And just that quickly, we have an exciting and promising solution to Rafa's bronchomalacia!
Dr. Jennings did not find any issues with the airways or blood flow in the lungs Rafa has grown (which he reminded us were "very impressive") upon first look at the CT scan. He did, however, find that Rafa's right bronchial tube had collapsed, but that the damage had not extended into his lungs. Where does the good news come in?

THIS IS OPERABLE. THIS IS FIXABLE. Dr. Jennings feels we're on the right path and making good progress and wants to keep things moving in the right direction, and has promised to give the situation a great deal of thought tonight so that he can come up with a surgical solution.

And he ended the conversation with, "My pleasure."

This is the part of the roller coaster where you take your hands off the bar and scream like your life depended on it...and love every minute of it.

Please continue to keep those candles lit and Rafa in your thoughts and prayers. It's working! It's really working!

Day 15-Hurry Up and Wait

And the roller coaster rides on, with some small signs of slowing down...
Today, our little fighter spent the bulk of the afternoon having a CT scan done of his chest, this after having a rigid bronchoscopy to determine what, if anything, had accumulated in his lungs and was making them unable to inhale and exhale air.

It was discovered that the bronchi, the entrance to Rafa's two lungs, have small, underdeveloped pathways. The CT scan was ordered to determine how far down this smallness went into his lungs, and the answer to this question will decide how we proceed with Rafa's treatment.
Don't get me wrong, we are fully committed to getting our baby well, as is his team of doctors. But this could involve a second surgery for him, which is always a risk, given the fact that he's on ECMO and bleeding of any kind is always a concern. Dr. Jennings is taking charge of this diagnosis and plan, and told us that, "there's never been an airway I couldn't fix." We don't want to be the exception to the rule, that's for sure! We'll either be hearing about the CT scan results tonight from Dr. Jennings, or not until tomorrow morning. Regardless, we only want to hear it from the source himself.

If you can, please light a candle tonight for Rafa that this setback can be remedied fairly easily, and that we can resume our course toward healing our baby wonder.

Tuesday, July 28, 2009


What a day...
More procedures than I can count, really, but I'll try: in order to find the source of the coagulation issues (why wasn't his blood clotting the way it should), the following happened:
1. OR tests
2. Belly ultrasound
3. Adjustments to the circuit
All of which (or none of which) helped to right the situation on its own.

Then came the campaign to empty his chest cavity. There's a bit more of an aggressive stance being taken on regaining the lost lung volume (but not lung amount). The tests to find the cause of the lack of progress included:
1. Chest ultrasound (not that much in the way of fluid in the chest cavity itself--onto the lungs...)
2. Bronchoscopy (revealed secretions, a.k.a. "gunk"--were told in one breath that the solution was simply to suction his chest more often, until the plan became...)
3. Rigid bronch, a procedure similar to a bronchoscopy, except now that the tube inserted into Rafa's lungs does not contain a camera to investigate what's going, but has suction of its own to directly remove the gunk and open the area up. This isn't happening until tomorrow morning so that he can have tonight to rest.

While all of this sounds daunting and overwhelming (which it certainly was for Mommy, Daddy, and Grandma), our stalwart champion faced the day with grace and stability. His vitals never wavered, he fussed a bit but was easily calmed down, and proved that he was, as he always had, ready to fight the good fight.

We are all drained and exhausted by the day, but incredibly grateful that, at his core, our baby is OK. His doctors are working hard to answer the question, "How can we open up his lungs as quickly, efficiently, and gently as possible?" And that's what we want, right?

Hope all of us get a good night's rest tonight...

We need Team Rafa to mobilize its forces like never before in this battle. We need Rafa's lungs to begin to open up and we need his procedure tomorrow to go smoothly. We are working somewhat against the clock, now that he's on his second ECMO circuit, and while progress always comes at its own pace and in its own time, we can never have too many thoughts and prayers lifting him up.

Oh, and before I forget, he got birthday presents today, of course: two cars from "Cars" and an Obama keychain that says, you guessed it, hope.


Rafa is two weeks old today! YAY HOORAY! He's a little older, a little wiser, and a lot cuter.
Called this morning, and our best nurse Melissa is back--she shared with me that they've done a second ultrasound of his head today (did one yesterday which was normal) because his bleed levels from his labs were a bit higher than normal, and they're also going to do a chest ultrasound to make sure that the clotbuster (yes, that's really what they call it) they gave him yesterday is moving things along and out of his right chest cavity. Please pray that these test results are both great gifts for a two-week old boy!

And in case you thought we'd abandoned the baked goods in favor of more healthy birthday treats, forget about it! Brownies abound today!

Monday, July 27, 2009

Day 13-The Bounce-Back

So, we're in the 48th hour of this new ECMO circuit, and Little Man is, in large part, doing just fine! No major news except that his doctors and ECMO therapists are going after expanding his lung volume fairly aggressively now, since Rafa lost a great deal of the lung volume he gained over the previous ten days (this happened because of the body's inflammatory response to the change in circuit--fluid re-entered his chest cavity, after he had a world-record high of 10 CCs going on as of yesterday! We were so close!)

There are two silver linings in today's news: one, according to the doctors and nurses, it should take less time to regain this lost lung volume than it did to get it in the first place. Instead of growing new lung from scratch, he'll simply be puffing up the lung he'd gained and expanding on it. I put simply in big quotation marks, since growing lung is by no means a small task. You try doing it sometime!

So keep those chants and prayers focused on growing those lungs, and no more ECMO circuit changes!

The second silver lining just blows me away. Laurie, our AFCC social worker, revealed to us that Rafa's repair surgery scar, as time passes and his belly grows, will develop a silver tinge to it.

Our baby will have a silver lining to him! Can you imagine such a thing?

What a magical creature our fighter is.

Sunday, July 26, 2009

Day 12/13-A Reality Check

Lest we forget we're on a roller coaster, we got a reminder this afternoon leading all the way into the wee hours of the morning.

We were warned that it was very possible that Rafa, like most babies who have an ECMO circuit change, will have an inflammatory response as his body attempts to acclimate. This can mean fluctuations in vital signs as well as taking on new fluid. Well, we certainly did see some fluctuations!

Before I share more, let me put this in perspective, as much for myself as for you all: he is fine. In the ways that matter, he is, at his core, stable, and all of his health practitioners were ready for this eventuality. They were ready to tweak his oxygen flow, adjust his meds, even give him more Lasix to help him pee out additional fluids. And as a result, he's in a good place right now.

Late this afternoon, Rafa began to desat down to the low 90s from where he'd been in the high 90s/100. That's ECMO talk for lose oxygen in his blood flow. Once this was gotten under some control, his blood pressure began to rise. Both of these occurrences can be explained a number of ways, one of the most interesting is that his heart has begun to shunt. This means it is attempting to reclaim some of the blood flow being regulated by the machine. Therefore, Rafa is likely to be, once again, trying to call the shots. However, it's given his family more than a few heart attacks.

Mommy was convinced that she needed to spend the night at his bedside in order to make it all OK. Daddy and Grandma came to join her for a couple of hours before it was decided it was best for all concerned if we went home to attempt to get a good night's sleep. Tonight's nurse, Christine, and ECMO tech Mike, were both feeling good about his stats and as though he was very stable where he was, despite the fact that his blood pressure was still a bit on the high side. So here we are, awake at 1:30 in the AM, trying to wind down from the day.

What's the lesson? Even in the smallest of increments, the CDH roller coaster applies to all, even to our little warrior. The best we can do is ride it out, hanging on to the front of the boat, and be ever grateful for where things stand. We have been largely spared any major detours on this road ahead, and we thank our lucky stars every minute of every day for that.

Keep praying, troops!

Pictures in the MSICU

Pretty impressive set-up, no? Note the decor, including the stuffed animals

The drawing/sign in the middle was on Rafa's cart when he arrived--so sweet!

Mommy does love her baby boy!

These are the kinds of numbers we spend our quality time with--here's a cheat sheet:
Green = heart rate (we want numbers anywhere between 125-150)
Yellow = oxygen levels (95-100 is good)
Red = blood pressure (45-50 is an acceptable range)
White = skin sensor picking up respiration. Here's where things get complicated. The
amount of breaths that this number registers may or may not be breaths in the traditional
sense, as in initiated by Rafa as inhalations. They could be hiccups, twitches, turns, or chest
movements that aren't deep enough to be considered breathing.

Day 12-Flipping the Script

So, we thought we would experiment with a new schedule since Daddy and Mommy haven't had a date night in about 12 weeks (bedrest plus baby time). Grandma Sherrie is at the hospital now, while Mommy and Daddy will arrive in the afternoon. We'll take a dinner break (read: date), and come back to the hospital for dessert, so to speak.

Last night was a largely restful night for our baby boy, though we did encounter our first dud of a nurse. Not going to name names, but suffice it to say that she was not excited about having to work a night shift in order to cover co-workers who couldn't make it. Overall, a sourpuss of a person, and one we're hoping won't be working with Rafa again anytime soon.

As far as how our hero fared, nice and stable as usual, with a slight dip in blood pressure that was easily corrected by late morning. He's back off of the dopamine (he was put back on briefly to help him stabilize), and I'm sure he's grooving along with Grandma, doing crossword puzzles and the like.

Some of you have asked what our typical day looks and feels like in the hospital. While today isn't exactly a fair example, it's not too far a departure from the status quo. Here goes:

8:30 Everyone's up and having breakfast. Mommy has pumped at least three times by now. Mothers in the house who breastfed, you know how that rolls.

9:30-10:00 Mommy and Grandma Sherrie depart for the hospital. Daddy has work or chores that he chisels away at, starting about now, with periodic TV rest breaks.

10:30 M and G arrive at hospital, get water and snacks, and ride up to the 7th floor, where our prince awaits.

*Pumping is happening throughout. It keeps Mommy honest.

10:30-12:30 G and M chat with nurses and ECMO technicians. We read to Rafa, talk to him, tell him about our time at home, how the cats are doing, etc. We are slowly able to be incorporated into his daily ablutions, including combing his hair and adding lotions to his dry spots. Mommy has even taken care of some of his drooly moments, which are always a hoot!

12:30-1:00 Lunch break

1:00-3:30/4:00 Repeat of the morning, occasionally with reports from the attendings on either his chest X-rays, head ultrasounds, or both, depending on the day

4:00 Mommy's LEAST favorite time of the day. Time to go home. G and M each have some quiet words with Rafa, Mommy reads a story, attempts to sing a song (meaning she usually leaks from the eyes pretty early on and can't keep going), and reminds her baby that he's her hero.

4:30 Off for home!

5/5:30 Dinner as a threesome usually, Mommy updates Daddy on the visit overall, though they've been in touch throughout the morning.

6:00/6:30 Daddy departs for the night shift on his bike, and Mommy calls regularly (read: compulsively) every 2-3 hours until he comes home.

Sounds like anyone else's day with a job, except ours doesn't come with the usual paycheck.
Ours is priceless.

Saturday, July 25, 2009

Day 11-Another bridge crossed!

Rafa made it through his ECMO circuit replacement! YAY!

It was the longest hour and a half of our lives, but we made it, and so did he. Bravery of the Day Award goes to Grandma Sherrie for bearing witness to the entire procedure, talking our baby boy through, and being the person he could fix his eyes on when he got scared.

Yes, you read right: our little minx had his eyes open the whole time. Can we recall the last time he confronted adversity? It was on his birth day, and he came into the world with his eyes open.

Rafa will not back down from a fight, that's for sure.

The hour or so that followed was pretty hairy, more so for the family than for Rafa and his caregivers. His heart rate went up, as did his blood pressure. But given the stress that his body was put through in that short period of time, he handled it all extremely well, according to his nurse, Liz, and his ECMO technician, Christine. Dr. Klineman came to see us when it was all over and felt that he had done tremendously on this mini-ECMO wean (at one point during the procedure, they clamped off portions of the circuits, just like they will when he is ready to come off of ECMO).

Gotta say, we haven't been this tired in a long time, but it was all worth it.

Right before Grandma and Mommy left, we saw them put in a peripheral IV, like big people get when they are the hospital. Why is this so important? Because this means that A) his swelling has gone down considerably and B) he can receive platelets directly through the IV, as opposed to through the circuit, possibly leading to clots, and that will hopefully buy us more time with his current tubing.

Pictures will be forthcoming tomorrow, as it's been a few entries since we've added any.
Before I go, this morning's chest X-ray revealed 6 CCs of lung volume--only a small step back, but the more lung he can grow, the sooner he can come off of ECMO. We're concentrating on numbers between 10 and 12 CCs, so please do the same!

Update-He came through the circuit replacement just fine! More later...

Day 11-Today's the day

Called to check in this morning to find out that yes, they will be changing Rafa's ECMO circuit this morning. Here's how to direct your prayers and happy thoughts: that the procedure will go well (it should given the fact that it's considered routine, but it's always good to hedge your bets), that his body will acclimate successfully to the new circuit without too many setbacks, and that we will continue to see progress for our brave soul. The circuit change should be happening at 11:00 this morning--please keep him in the light!

I will send an update to let you know how things go...

Friday, July 24, 2009

Day 10-A Double-Digit Milestone

We woke up this morning with a bit of a start: when we called in to check on our boy, we found out he'd had a very stable night. That wasn't the scary part. Then, we were told that there was the possibility that today was the day his ECMO circuit would be changed. Basically, a given circuit (tubing) of ECMO has a set lifespan that is dependent on the person receiving it, as well as the mechanical fortitude of its parts. When there is an increase in clotting that can't be managed with medication, the conversation begins about replacing the circuit. While this is a routine procedure, anything that directly affects your baby is automatically not routine. One of our lovely nurses, Tracey, shared this news with us and then directed us to the Great Ken, our lovable and quirky ECMO technician (we've had others, but he's our fave). After explaining the nature of the process, he proceeded to tell us that Rafa has done "remarkably well" tolerating his circuit for "this long."

This long? It's only been 10 days! But it's all relative. Apparently, some circuits need to be changed every three days, while a select few can last for a full three weeks, and everything in between. While we're hoping to get as much bang for our buck as possible out of the current circuit, since it means re-introducing fluid into his system after he's made such progress getting rid of it, we will follow the course along with Rafa and give him all of our love and strength.

We did have our family meeting today, at which the following folks were present: Daddy, Mommy, Grandma Sherrie, Dr. Chan, Nurse Tracey, Dr. Klineman (new face--an attending on level with Dr. Jennings and Dr. Weldon), Dr. Stotten, and one more nurse whose name I don't remember (sorry, Nurse!) No surprises, thank God, but lots of affirmation, albeit in medical-ese, for Rafa's progress and his continued growth.

Two highlights: his lung volume is up to 7 CCs as of this morning! AMAZING! And his doctors foresee him ready for a trial off of ECMO in as soon as 10 days.

We've done 10 days already, we can certainly do 10 more!

Hang ten, baby boy! We are so with you!

Thursday, July 23, 2009

Day 9-"The sun'll come out tomorrow..."

Rafa continues to be in Annie's corner in terms of his zest for life, his willingness to fight, and his belief in the sunny side. He had a lot of action to put up with today and tolerated it well--between an overdue head ultrasound (which came out fine), two neighbors with many family members present and a lot of hubbub, a mommy who wants to fuss and fart over him all the time, and two stories read (one from Auntie Andrea and one from Mommy), he's darn right tuckered!

On to the medical updates: Dr. Chan, who has been overseeing Rafa's care since he was admitted to the ICU, shared with us many boons, including that his chest is almost empty of fluid, based on what they can tell currently. He is also not taking on any new fluid in his chest, which is hugely important. This means that, in theory, his lungs can continue to expand unobstructed. Rafa is still somewhere between 4-5 CCs of lung volume, so we need those lung chants and prayers to help what lung is there to keep on keepin' on. His numbers on the respiration scale are also looking up, as in, he's working just hard enough to sustain between 5 and 10 minutes of more than 10 breaths per minute, sometimes as many as 20!

All of this is great news, capped off by one of the big-wig attendings telling me that Rafa is doing "incredibly well," given everything that he's been through.

So why I am still so scared?

Because there's so much ahead: in the immediate future, a family meeting (tomorrow afternoon, most likely), and hopefully, movement toward an ECMO wean. In the long run, keeping his lungs and other major organs healthy and working through the various changes in his course of treatment. We have to keep his boat afloat, Team Rafa, for as long as he needs us to! Please stay on board with us, as you have so faithfully up until this point. He's feeling your energy and love, your belief in the promise of him, and it's all making such a huge difference in his life.

We can't tell you how much it all means to us. Just know that the best gift in the end will come to your children's birthday parties and make a giant mess...because he's his father's son.

Wednesday, July 22, 2009

Day 8-"On the Hot Tamale Train!"

For those of you who watch "So You Think You Can Dance," the reference is clear. Of whom am I speaking? Why, that would be Rafael James Carlos Escobar, of course!

We saw the most exciting X-ray to date, one that showed almost complete lung development on the right side and...drum roll please...partial lung development on the left side!

That's right, our little one has lung on the side of his body where all of his organs had squished up and stunted its development, and it's almost fully caught up with its partner. Understand that there's a lot to be determined, in terms of functionality, air flow, etc., but since he's only eight days old, we think it's hella good progress. He's also got 5 CCs of breath entering his lungs, which puts him about halfway toward the big ECMO wean conversation. We were, and are, over the moon...

We were particularly excited to share this news with our dear friend, Auntie Andrea, who came from NYC by way of Portland, Maine, to see us for the next couple of days. We are so thrilled to have her infectious smile, positive outlook, and rah-rah sensibility near us, it makes the next 48 hours a little brighter. Thanks, Ms. Kassar, for being a friend.

Tuesday, July 21, 2009

Day 7-A Week-Old Wonder

What a day at the hospital!

There's tons to report, and to be honest, this is about the time when I hit my healing wall, but here's the bullet-pointed version of Rafa's one-week birthday:

The cupcakes were a HUGE hit!

The surgical fellow, Dr. Stotten, is starting to learn what new mommies are all about--when given the option to schedule a chest tube adjustment, he chose to do it when we were at lunch, as opposed to at his bedside. Thanks for taking us into account, Doc!

Rafa's ECMO technician, Ken, taught us all we needed to know about the process by which babies are weaned off of ECMO. Our lovely one is 1/3 to 1/2 of the way there, and we could be undertaking that journey in as soon as a week! Can you believe it? Even if it's not that soon, the power of positive thinking gives us something wonderful to focus on. When I have more energy, I'll explain to you what exactly this means.

Our boy is an "awesome pee-er" (from his nurses' lips to your ears)! What makes this so important is that is kidneys are healthy and moving fluid along, keeping him in balance and allowing his chest drains to be productive. It's all connected...

We've put in a request for our first "family meeting" to check in with Rafa's medical team about how he's progressing and make a game plan for the week to come. Not sure when exactly it's going to happen, but it should be in the next couple of days or so.

And last, but certainly not least, Mommy saw her baby's eyes for the first time today! To say it was magical doesn't even cut it.

Here are some pictures of our quality time at Brigham and Women's before Mommy was discharged. There's no good close-up of Rafa that reflects that he looks like now, but you'll get a sense of the amount of machinery involved in his recovery. Thank God for modern medicine!

Monday, July 20, 2009

Day 6-Moody Monday

This refers to Mommy, whose hormones have finally caught up with her. Two major meltdowns later, and she's pretty laid waste. Only one of these had anything to do with Rafa, who is doing just fine, by the way. We were there when he had a minor procedure done to help his chest tubes circulate more efficiently, and I just lost it. He, however, made it through easy as pie. I could definitely take some lessons in zen from our week-old son, don't you think?
Speaking of which, his one week old birthday is tomorrow! Grandma Sherrie is making cupcakes as I type, and we'll be going over there as a family to share them with all of the guardian angels, nurses and ECMO technicians alike, who have been keeping watch over our precious boy.
Keep lung chants and successful chest drains in your prayers and thoughts--more tomorrow!

Sunday, July 19, 2009

Day 5-"The Very Quiet Cricket"

This is Rafa's new nickname, and for those of you who are familiar with the book, you know why. The title character needs time and patience to be ready to share his chirp with the world, and when he does, it's the most beautiful sound in the world.

We can't wait for Rafa's chirp!

This was our first morning in the hospital with him post-Mommy's discharge, and boy, was it an eventful one! We got to see Little Man's chest X-ray, and the amount of lung he has on the right side is astonishing! It's about half the lung volume (cc's, they call it) you need in order to breathe at present, after only five days. Amazing! This will be his "good" lung, as people refer to lungs in the CDH world. His left lung is still a late bloomer, and we have yet to see it puff up at all. But we have every confidence that it will. Mommy had a quick catnap, Grandma Sherrie got Rafa's help finishing her crossword puzzle, and we learned all sorts of trick of the breastfeeding trade.

Dr. Jennings/House/Rusty-Dusty called the nurses to check in on him last evening, and according to Daddy, his take on Rafa's progress thus far is "encouraging." And this is a very hard man to please.

A word about Rafa's father--he is, by far, the most dedicated, gentle, persistent advocate for his son, and I wouldn't want it any other way. They've both been through war, and I think that Daddy will be Rafa's spiritual guidance through his own battles. I'm just happy to have a front row seat to the show.

We need more lung chants and prayers, that both Rafael's right lung keeps expanding and that his left lung does the best it can to catch up. There's no real rush, as his doctors are taking his treatment at his own pace, but as always, he needs all the support he can get.

And please keep all of the world's CDH babies in your hearts--they teach us more about humility, courage, living in the moment, and sheer will than anyone else.

Saturday, July 18, 2009

Day 4-"It's Plastic!"

So, today is my official discharge day, and there's a rainbow of feelings connected to that idea. On the one hand, it will be SO nice to sleep in our own bed, have our own TV back, see our kitties, etc. On the other hand, leaving our baby boy will be wrenching, I know, despite all of the faith and confidence we have in those we are leaving him with. I suppose I won't really know how to feel until it comes time to feel it.

In Rafa's health news, our warrior continues to soldier on triumphantly! The fluid that was drained out of his right chest cavity has done what his doctors hoped for--our boy has LUNG! And it's growing! We can also see the right side of his diaphragm moving up and down as he "breathes," one more indication that his repair surgery was successful and is healing well. Last but certainly not least, the "cold fire" monitor (yes, that's its real name) that registers lung and chest activity has noted some action in Rafa's chest. This means that his recovery from the diaphragm up is coming together.

Diaphragm + functional lung tissue + gentle ventilation = eventual BREATHING!

On a funny note, Dr. Weldon, a new character on the scene and Dr. Jennings' colleague, came by to see us today to chat about the right lung development and Rafa's overall progress. At this point, he explained to us that the diaphragm patch is, in fact, just that: a piece of plastic that will never move. In theory, we always knew that, but every time Grandma Sherrie and Mommy tried to wrap their minds around the idea that only half of his diaphragm will move up and down and that the right side will compensate for the lack of movement on the left, Dr. Weldon kept having to remind us..."it's plastic!"

The conversation went a little something like this:

Dr. Weldon: "His left diaphragm will never move. The patch's only purpose is to keep the thoracic cavity contents separate from those in the abdomen."

Grandma: "But why?"

Dr. Weldon: "It's plastic!"

Mommy: "So the right side will compensate for the left because it will never move?"

Dr. Weldon: "Yes, it's plastic!"

And so on and so forth...

Think "Who's On First?" only a little more sterile...

Tia Claudia and Anabella leave us this evening to return to New York. Daddy has been so rejuvenated by their presence, and it's been wonderful to see what dedicated, loving aunties they are turning out to be...not that we had any doubts.

Thank you SO much for the continued support! Your love and prayers are helping his lungs to heal and his body to grow. Rafa thanks you for it, and so do we.

Friday, July 17, 2009

Day 3

Rafa, the brave one, continues to live up to his namesake, "God healed." We are also riding the kiddie version of the CDH roller-coaster right now. He's remained stable since the day of his birth, but as they look toward moving his progress forward, they need to tweak his course of treatment, and as always, he has something to say about that.

We started out the morning by finding out that he'd had a very stable night (thank God) and that his blood pressure medication had been lowered because his nurses felt he would do just as well without as much. This is, of course, a big "hooray"! By the afternoon, the tenor on of the conversation had changed as it came to involve an accumulation of fluid in his chest cavity, not to be confused with his lungs. This fluid was preventing the development of his right lung and needed to be taken care of, particularly because they are using gentle ventilation to slowly puff his lungs into action and aren't seeing the kind of growth they would like.

Enter Dr. Jennings, to the rescue!

He inserted a small catheter in Rafa's right side to match the one in his left and hoped to see a big gush of fluid, but only saw a small burst instead. The nurses then installed suction to help the fluid move its way along. Tomorrow morning, he will have a chest x-ray that will hopefully show more drainage and some amount of lung growth.

We also welcomed Tia Anabella and Claudia to the greater Boston area, as they came to spend time with us and with Rafa, bringing with them cheer and new books.

Sadly, we must say good-bye to the Bishop-Davidson clan. I think they know what they mean to us, but in case not, I'm telling them now, "You are part of the heart of Team Rafa! We love you more than we can say."

Please focus on his lungs as you think about and pray for our baby in the next few days. While we're at the very beginning of this road, we want to trend to remain an upward one.

And remember that, at the center of this journey, there is a brave, small boy who inspires everyone who meets him.

Thursday, July 16, 2009

Day 2

Our little warrior continues to be stable! Thank God!
We got to see a chest X-ray this morning (they take one every day) to see what progress, if any, Rafa's lungs are making in terms of expanding and growing. They're still so tiny that there's not much to see, but it was cool to know what was going on both in and outside. He also has ultrasounds of his brain every other day, blood draws and temperature measurements daily, and all sorts of other monitoring that will become more clear to us as this all unfolds.
Grandma read Rafa The Giving Tree last night and Mommy read him Oh, the Places You'll Go! this afternoon, both of which he seemed to enjoy. Daddy will be heading in about 15 minutes to see him and give him his nightly snuggles before it's bedtime. It's nice to be developing routines with him, just like any new family does with their baby.
Thank you all again for your prayers and positive vibes! We're literally taking this journal one day at a time, and we need a renewed commitment to his recovery every day--that's where you all come in...
Love to you all!

Wednesday, July 15, 2009

Hello everyone!

Hi all! I understand that Juan did an excellent job of keeping you all up to speed on how our EXIT-to-ECMO procedure went yesterday, and it went very well! As you saw, we have a spectacularly beautiful little boy person to show for it, who is currently doing well in his room in the Medical/Surgical ICU, staying nice and stable. Mommy, Daddy, Grandma Sherrie, Uncle Jim, and Auntie Edie have all seen him quite a few times between yesterday and this evening, and he continues to look wonderful each time. We hope to have more pictures up tomorrow!
Thank you all so much for your prayers, love, fairy dust, and good thoughts leading up to yesterday! Rafa's fight in the outside world has just begun, so we need them to keep on keepin' on...
He made it through his first 24 hours of life, complete with a slight adjustment of one of his ECMO cannulas, and we're looking forward to another stable, uneventful evening. Please do all you can to help us keep it that way!
Love to you all--off to rest, and more tomorrow...

Tuesday, July 14, 2009

Thank you for your support!

Guys and Gals! We just want to say thanks to everybody for your moral support.


Rafa just came out his operation fine!
As soon Phoebe is able to write in the
computer she will explain more about
the surgery! YAYAYAYA !

Our Phoebe resting after a big battle!


This is just old info. Rafa was born at 9:40 in the morning.

Second Rafa's pic

Phoebe is doing well, she is awake and getting better.

First pictures of Rafa!

Rafa is finally with us! So far the delivery was a success!

Rafa is here!

Phoebe just had Rafa! She is fine

Bastille Day

Hi! This is Juan Posting!
Phoebe is at the operating room. She is fine!

Monday, July 13, 2009

With One Day Left...

Many people have asked how we're feeling and what we're thinking at this point, being so close to July 14th. What can I say?

We're focused on his recovery.

We're packing bags, his included.

We're praying for smooth surgeries.

We're keeping our eyes on the prize, that our round, bouncing, glorious, beautiful boy will come home with us.

We're asking all the higher powers there are to show mercy on our precious one, to spare him pain, and to keep his body strong to show the fighter he is in his soul.

And we're trusting that everyone who is following this story will keep our baby in the light, as you have all along the way.

We are humble and grateful in the face of your unending love and support, from friends and strangers alike, all of whom have become part of Rafa's angel brigade.

Let the fight begin!

Saturday, July 11, 2009

On the Big Day

Many of you have been asking how you'll get updates about my surgery and the baby's surgery throughout the day on July 14th. This will be the best way--spread the word!

My mom and Juan will be updating the blog when I go into surgery, as the nurses give them updates, when Rafa goes into surgery, more updates, and finally, when he is placed in the Medical/Surgical ICU. I know you will be tempted to call, and I promise you, we will be in so many "no cell" zones at different places in the hospital that this will be the most reliable source of information for you.

If anything drastic happens, we will make sure you all are made aware in the best ways we know how, though all parties involved (medical and otherwise) anticipate smooth surgeries and recoveries for mommy and baby.

Friday, July 10, 2009

Our Cup Overfloweth!

On the other blogs front: Ruby is going home today! YAYAYAYAYAY! I can't imagine how thrilled and terrified her mommy and daddy must be, but I bet they'll sleep tonight like they've never slept before...

As far as the Final Countdown to July 14th goes, we've had our last meeting and consent sign-off before Tuesday, this time with two anesthesiologists, one for me and one for Rafa. Both seemed like lovely, pleasant men who kept us well-informed about the risks involved as well as possible side effects. Rafa's anesthesiologist thinks it might even be possible to only use a VV ECMO machine instead of a VA ECMO machine, as we were told by Dr. Jennings.

What's the difference? With VV ECMO, the heart can actually participate in the pumping and transfer of blood (which, in theory, Rafa's can do because it's normal in shape and function), whereas VA ECMO is a complete heart-lung bypass machine. Regardless of which they choose, I'm just happy to hear that any of his doctors have enough faith in his own body to do what it's supposed to do.

Most heartening of all, Rafa's anesthesiologist said that it was all but a certainty that Rafa will come out of his repair surgery OK (remember that there are all kinds of caveats around this, as there are with any medical procedure). Mommy's latest fear has been that she'll go under for her own surgery and wake up to devastated faces. But I slept great last night, knowing that all of the machinery Rafa's attached to will keep him alive in a more reliable fashion than if you or I were to undergo the same surgery.

We'll receive a finalized day of surgery schedule today or Monday, as well as a last call from Big Ouiser to discuss the EXIT surgery from an OB's perspective. We're getting ready to storm the Bastille!

Thursday, July 9, 2009

ICU? Not So Bad

As's me at around 36 weeks!

We're beginning to wonder if our AFCC team just likes to hang out with us, because it's about that time, every afternoon, when we get a call from Linda or Laurie about coming over to Children's for one thing or another. Yesterday's adventure involved a tour of the the Medical/Surgical ICU, not to be confused with the NICU. This is the portion of the hospital where Rafa will recover from his surgery and spend time on ECMO. When he's ready to come off of ECMO, he will be transfered to the NICU proper. Things were pretty sterile and non-descript, with some strategically placed kid-friendly artwork. But more importantly, the nurse we met was very warm and soothing, answered our questions, and knew well enough to give me a hug when we left. That's what I'm talking about!

Today's appointments are:
11:30 Non-stress test
1:00 Consult with Dr. Economy
2:00 Meet with Dr. Hess, my anesthesiologist
2:30 Meet with a rep from the Children's anesthesiology department
3:30 Collapse and sleep

We are also looking forward to some visitors this afternoon, the Silvers from Brooklyn! Can't wait to see you all!

Wednesday, July 8, 2009

July 14th = Happy Birthday to Rafa!

We have a plan, ladies and gentlemen! Spread the word!
We were called into the AFCC to have an impromptu meeting with Dr. Jennings, Nurse Linda, Laurie our social worker, Nurse Donna (a new face on the scene), and the three of us to talk about our options and make a final decision.
And we have.
Our baby love will be born next Tuesday, July 14th, via EXIT-to-ECMO (see our earlier entries for an explanation of what that entails). The procedure will begin at about 8:00 AM at Children's Hospital, and will involve the following:

1. Baby is delivered and placed on ECMO.
2. I'm sewn up.
3. Rafa is whisked off to his own operating room to have his repair surgery, as in, the organs that are in his chest are moved to his abdomen (he might need an additional patch other than the one replacing half of his diaphragm--this one would act as a skin graft in case he doesn't have enough skin to cover his abdomen with its new organs).
4. He is taken to his room in the NICU to recover and I am taken to my room at the Brigham. As soon as I am allowed, I go over to Children's where we spend as much time with our new miracle as possible.

A couple more pieces of very hopeful news: all of the MRIs have shown Rafa's organs that are currently lodged in his chest, including his heart, to be formed completely normally. That's right! For all of their malformation in terms of location, he has all of his parts that are, in theory, ready to work the way they are supposed to as soon as they are placed where they belong.

Last but not least, Dr. Jennings drew a picture for us that took our breath away--as of two weeks on ECMO, provided Rafa makes strides and stays healthy as everyone is hoping he will, his lungs will be of normal size.


They will still have their challenges, including pulmonary hypertension and possibly uneven size, but they will, on paper, look like everyone else's lungs!

What a tremendous gift.

Thank you, Great Poker Game in the Sky! That's where all of our relatives who have passed on are sitting, being crass, betting money they don't have, and talking smack.

In other words, being related to us.

We can't wait to see him! It's been so nice to experience some normal mommy and daddy emotions and anticipation.

Keep the good thoughts coming! We're almost there, and we couldn't have made it without you all!

Tuesday, July 7, 2009

Just Holding Pat

Tomorrow is the BIG day--36 weeks! Rafa has done such a good job of staying where he is, and we're so proud of him! We're also thinking that he's quite comfy in his current real estate, and that's just fine with us.
Still no delivery news, but hoping it will come today...
We won't be seeing Big Ouiser on Wednesday as usual since she's out of town. But we will be seeing her colleague, Dr. Economy (yes, that's her name) on Thursday for the usual NST and consult round.
The sun has left us again, but for only a brief stint. Let's hope it returns soon! It was so nice to have it around.

Sunday, July 5, 2009

A New York State of Mind

Been feeling very nostalgic the last few days and have been missing the heck out of NYC. Don't really know why, except perhaps that the sun has finally decided to appear for three consecutive days, and I'm reminded what these cool-ish, heady days are like in the Big Apple before the humid blast kicks in.

They're pretty nice.

I can't wait for our best boy to have his first trip home, to play in Central Park, to ride the subway, to stroll through his neighborhood and feel the energizing hum that only Gotham has to offer. I don't know when that will be, or under what circumstances we'll make that happen, but we will.

That's our Emerald City after all, and after some trials and tribulations, Dorothy does get there.
With brains, courage, and heart.

Friday, July 3, 2009


Who is Ruby, you might be asking?

Well, she's a lovely little baby girl who is also fighting CDH. She was born in April and her family followed much of the same path toward delivery and recovery that we're facing. At any rate, I've been following her blog ( for a couple of months, and the miraculous moment has finally arrived for Ruby Hope and her mommy and daddy: she's finally breathing unassisted! That's right! After 26 days on ECMO and about three months in the NICU, she's ready to fly. I am so thrilled for the Starlings! Hopefully, she'll be coming home in the next few weeks...

This bit of good news gives us great hope.

Thursday, July 2, 2009

Wednesday and "The Plan"

Good day yesterday, fairly uneventful: the NST showed a great active heart rate, but our whirling dervish was hellbent on bee-bopping his way through the test, so the nurses couldn't get the resting heart rate they needed. So, we went off to have another biophysical profile, just so they could double-check that everything was OK as they'd predicted. And it was. The best part? I always greet Rafa whenever we have an ultrasound, and yesterday was no exception. Except yesterday, when I said, "Hi, Nug," he turned his face toward my face, and we saw him in all his baby glory! It was positively magical.
Then, we saw Dr. Wilkins-Haug, and it was more of the same. No formal plan, though it seems as though everyone is leaning toward an EXIT-to-ECMO procedure for delivery. I know this because Big Ouiser spent a great deal of time explaining how it works, and I'm a pretty quick study ;)

Here's how it happens:

1. I go under for general anesthesia for what is, for the most part, a regular c-section at the start.

2. They will deliver the baby head and shoulders, still attached to the placenta via the umbilical cord, and attach him to an ECMO machine. They do this by placing two cannulas (basically catheters) in his neck, one for de-oxygentated blood and one for oxygen-rich blood. This is meant to take pressure off his lungs and heart while they are taking time to heal and expand.

3. All the while, the general anesthesia is fooling my uterus into thinking that there's still a baby in there so that it won't contract and the placenta won't separate from the uterine wall. The surgeons have about a 45-minute window to deliver the baby, attach him to ECMO, and then, fill my uterus in on the plan so that the placenta can be delivered and they can close up shop. No pressure though...

I don't know how long the whole operation takes or how long I'll be under, but it's a pretty big deal in its entirety. The one thing I'm mourning the loss of is the opportunity to see him when he's born, if only for a few seconds, and without all of the tubes and tape. However, many of the CDH blogs I read talk of mommies and daddies being able to see through all that and still know that their baby is their baby.

That's the kind of vision we're hoping for.

P.S. Sorry there are no pictures yet--they're coming!