Sunday, August 23, 2009

Hi Baby...

To my dearest babylove,

We had such a good time at your party yesterday. Mommy and Daddy are so proud of you, all that you've taught us, and how well everyone learned your lessons. We had pretty balloons and lots of sunshine, and we sang your favorite song, "Close to You," because Grandma Sherrie reminded us how much you love music.

Uncle Channing took a beautiful picture of your balloon being set free, and now, I get to look at it and see you whenever I want to.

Auntie Edie, Auntie Ariel, and Auntie Andrea helped Mommy to remember how good it felt to laugh and think about you at the same time, because you've only ever made Mommy happy.

Uncle Jim helped Grandma Sherrie so much by giving her an arm to hold and a tower of strength to lean on.

Tia Anabella and Tia Claudia were there with Abuela to support Daddy and, in their faces, Mommy was reminded again and again what a beautiful boy you are.

Tia Clau, Uncle Pete, Tia Carolina, Tio Carlos, Tia Lidia, Tia Edith, and Uncle Greg brought their love and smiles, from up close and far away.

Mommy made special promises to Calvin, Lucy, David, Julia, Oliver, Emma, Faye, Audrey, Ellie, Sofia, Amaya, and Ivy from you to them. You know what those promises are.

And, maybe most importantly, Daddy made you the the world's coolest spaceship. We hope you're in it right now, on your way to see greater things and live higher heights than we could ever imagine.

Promise Mommy you're having a good time, and that you're OK. If you ever need Mommy, all you have to do is say so, and I'll come runnin'...

I can't wait to see you again, my best precious.

To my heart and from my heart,

Mommy

Saturday, August 22, 2009

Gratitude and Love Overflowing

Rafa's memorial service today was a magical experience, full of our baby's legacy of hope, joy, laughter, and beauty.

We can't begin to truly express what it meant to us to have all of you present who were able to join us, and to those of you who were there in spirit, we felt your presence as well.

We will post pictures of the day soon.

Friday, August 21, 2009

Tuesday, August 18, 2009

Honoring Our Little Healer

Our memorial service for Rafa's life and lessons will be held at:

Jamaica Pond Park Boathouse

Corner of Jamaicaway and Pond Street

Jamaica Plain, MA

Saturday, August 22nd

2:00 PM

Please bring your favorite flowers and wear colorful garb.

All members of Team Rafa are welcome.

Reception to follow.

Monday, August 17, 2009

Earning His Wings

Our baby boy, Rafael James Carlos Escobar, went to be with his Nanny, Grandpa Red, Great-Grandma, Mato, and Papa Miguel in Heaven on Monday, August 17 at 11:07 PM. He went to sleep peacefully with his Mommy and Daddy in bed with him, with Grandma Sherrie looking on.

A celebration of his life and lessons will be scheduled soon.

Thank you so much for your continued love and support through his struggle and our fight for his life. He felt it each and every day, as did we.

Day 34-A Bit of a Downward Spiral

So, our poor baby love has suffered some slings and arrows in the last 24 hours, among these are:

1. Another pneuothorax (seems to be improving now that a new chest tube has been put in to replace the one he had removed only yesterday morning)

2. A possible infection (he had a touch of a fever and his white blood cell count was up a bit--they've sent off cultures to see what could be going on)

3. High heart rate in response to the high-fi oscillating ventilator

4. He's at the max of oxygen flow and nitric oxide, and reporting oxygen saturations in the low 90s (better than where he was last night, when his sats were in the low 80s)


Currently, he's in a precariously stable place with his vitals, but it's not the reassuring stability we knew on ECMO. Isn't that funny? Who knew we would ever look back on those days with wistful eyes?

The main issue is the ventilator he's on--the high pressures necessary to keep his lungs inflated are wreaking havoc with his heart rate. He must come off of this ventilator in order to keep his recover moving forward.

If Rafa has ever strayed from your thoughts because you thought he was in a safer place (as we did for a while), please refocus them. He needs our re-commitment to all things TEAM RAFA!

The chant:

Stable, stable,

Hold that O!

Stable, stable,

Hold that O!

We'll let you know what today holds--we have faith that God and you all are with our baby boy...

Sunday, August 16, 2009

Rafa is having difficulty stabilizing again--please send us your prayers!

Day 33-A Stable Night, With Some Tweaks...And Friends in the MSICU

Thank God, Rafa had an uneventful night last night. They've done some tweaking of his medications (up on this, down on that), but the good news is...his oxygenation levels stayed between 93 and 96 all night long! HOORAY!

The big plan for today is to largely keep him exactly where he is, except to remove his right chest tube (another HOORAY!) Rafa will be suctioned again at some point, but without being hand-bagged (that's the way that made him go kablooey). We're hoping that, starting Monday, the respiratory team can get back on it and solve the issue with his heart rate so that the lung recruitment phase of his recovery can continue.

And one last note: a special shout-out to Nurse Tracey, who not only kept Mommy wonderful company all day yesterday, but made a lunch run for Mommy and Daddy, as they were busy being riveted to "The Numbers."

Please pray that our stable streak last, and that our warrior boy gets the support he needs to continue to heal.

Saturday, August 15, 2009

Day 32-And we ride on...

So, the latest roller coaster dip happened today--Baby Boy is having trouble oxygenating his body, which is not surprising since he's got so little lung to work with, comparatively speaking. In addition, the right ventricle of his heart needs some support to pump blood as effectively as his left, since it was squished as his abdominal organs crept upward. What this meant today was that his heart rate would fluctuate widely and his oxygen saturations would dip into the low 80s.

After a pow-wow that included Dr. Jennings via phone, it was decided to put Rafa on nitric oxide, which is helping to relax the blood vessels in his lungs and allow them more surface area to absorb oxygen. His heart is getting support from a couple of medications as well (whose names I can't remember right now).

We've certainly entered a new chapter in our fight with Rafa against CDH, that's for sure, one that could be more rocky than the stint he had on ECMO.

Please pray for any or all of the following:

1. Nitric oxide continues to help Rafa's lungs
2. The respiratory techs are able to come down on some of the pressures on his vent settings
3. His vitals stay stable
4. He continues to pee off excess fluid as he's done so well all along

At this point, Rafa's pulmonary hypertension (tightening blood vessels in his lungs) is being controlled effectively. It must stay this way for him to thrive and survive. There are other medications that can be tried, if for some reason the nitric oxide is no longer effective. But we are in dangerous territory as we climb upward toward stability.

We praise Rafa for his strength, and God for his presence. We need both to continue on.

Update-Rafa is stable, thank God! They've placed him on nitric oxide, which they think will help his lungs relax and better receive oxygen. More soon.

Team Rafa, mobilize!

Rafa's stats are all over the place--his oxygen levels aren't good, and his heart rate is riding its own roller coaster. Please send prayers and thoughts of healing and stability! He needs them so badly!

Friday, August 14, 2009

Day 31-Re-establishing Equilibrium

Life off of ECMO is nothing if not interesting. We're asking Rafa to set the pace, to establish his own vitals, to show us how stable he is without the support of "the machine," and he's doing the best he can to find his happy place.

His oxygen saturations (remember the yellow line from his monitor?) fluctuate from the high 80s to the high 90s, depending on the time in and what has been happening in his day. His team of doctors is OK with these numbers, so long as his blood gases stay in the acceptable to good range. It's a new mean to adjust to as his family, knowing that the parameters of OK are much wider.

Rafa also tolerated suctioning much better today, thank God! Turns out it was most likely his Vegel response in action, a small nerve at the bridge where your bronchi branch out that suppresses heart rate when you have a great deal of pressure in your chest, like when you're coughing or bearing down. The change in pressure he was experiencing from his high-fi ventilator to being hand-bagged, which feels much more like regular breathing, most likely triggered this reaction and made for his ups and downs in heart rate last night.

That being said, he's being suctioned again tonight at midnight, and we're all a little gun shy.

Please keep our baby boy in the light, encourage his body to continue to stabilize, lose fluid, and remind him what a great job he's doing being his own guy!

We're so incredibly proud of him...

P.S. Uncle Jim is coming to visit tonight and will be seeing his nephew in the hospital tomorrow. YAY!

Day 30/31-Baptism by Fire: Mommy and Daddy's First Night in the Hospital

So...just when we thought there was peace in the valley...

Mommy calls in to check on Rafa, and gets a really odd response from his nurse, Melissa: he's having a chest X-ray done. He never has chest X-rays done in the middle of the night.

Then Daddy calls, "His heart rate is dropping! His heart rate is dropping!"

Mommy whisks over to the hospital to find a healthy number of doctors and respiratory therapists trying to figure out why, after being suctioned, Rafa's heart rate drops every time he is put back on his ventilator. After much experimentation and a few new drugs for support, the most likely theory is that his breathing tube had gunk at the bottom of it that had accumulated over the course of the day (he'd had a mini-episode of this earlier), causing him to not be able to make the most of breathing and leading his blood to be a bit overly acidic. When this blood hit Rafa's heart, it didn't like it one bit.

After a half-hour of panic, Rafa spent the rest of the night quietly resting, while Mommy and Daddy struggled to find a comfy spot on the window seat together. Most of his doctors are chalking this up to "weird stuff happens" and are ready to move forward with his progress, with a little more tempered speed.

We're all for that. Rafa tells us when he needs, and it's our job to listen.

Thank God this issue was contained, that it was most likely not pulmonary hypertension-related, and that his doctors and nurses are vigilantly watching to keep him in a safe, healthy place.

Thursday, August 13, 2009

Day 30-A beautifully boring day...

Lovely Boy spent the day cruising down on his ventilator settings (thank God!) and maintaining good blood gas levels. There's a rumor going around that he might be ready for the conventional vent as soon as tomorrow. But we're very happy to let the Rafa Man dictate the pace of things. He's already made such strides in such a short period of time, a rest break would be a wondrous idea for all concerned...

What a miraculous blessing our baby is. We're so lucky to know him.

P.S. Please pray for Rafa to start losing some fluid--he's a champion pee-er, as we well know, but he could use some help. He's now on both Lasix and Diurel to give him a boost. Here's your fluid chant:

FLUID-OFF-FLUID-OFF!

Day 30-A safe, stable night off of the machine...

Rafa did very well in his first night off of ECMO! His blood gas levels remained good, he stayed stable in terms of his vitals, and the respiratory techs were able to go down at least one level on the high-fi ventilator. WHOOPIE!

We're calling July 13 Rafa's "second" birthday, knowing he has a new lease on life both because of, and away from, the ECMO machine.

ECMO, you did your job beautifully! Thanks for helping our baby boy fly!

Wednesday, August 12, 2009

How the ECMO went down...

It was a whirlwind of a 24 hour period, but basically, it went like this:

We came to the hospital this morning to find our baby boy trialing off of ECMO on the conventional ventilator for a half-hour. While this was TOTALLY stressful, it was a necessary step to finding out whether or not his system could handle oxygen and CO2 exchange on its own.

It didn't go so well on the conventional vent, as measured by the blood gases that were drawn during the trial, so they decided to try the high-frequency oscillating ventilator, the one he'd been on over the weekend. These stats looked much better, so they kept him off the circuit for a good two hours or so to test him.

And he passed!

With that, the decision was made to take Rafa off of ECMO! The procedure to remove the cannulas was only 30 minutes, but it felt like a lifetime. We're absolutely thrilled with this move forward...with a catch.

See, now Rafa's doing a tremendous amount more of the work, in terms of his lungs and heart moving oxygen and CO2 through his body, and that's a little scary to contemplate. He's been on life support for the first month of his life and needs to continue to be able to do so--there's no going back, now that we're off of ECMO.

What's your new mantra now, Team?

Good blood gases!

Wean down the vent!

In rapid succession until we can get back on the conventional ventilator again...

Thanks for the efforts today, Team. Keep up the good work!

Rafael James Carlos Escobar is officially off of ECMO! More to come.

TEAM RAFA, MOBILIZE!

OK, troops, whatever you've got left in your coffers (and I know it's a lot), we need it today!

Because Rafa's done so well with his title volumes, there's talk of cycling him sometime today--while we may have said that other moments and days are the most important in his life, cycling him off of ECMO truly takes the cake.

Spread the word, encourage your friends, we need a relatively smooth cycling! We don't know how long this process will be, but it is, like everything else with CDH, a marathon and not a sprint. Every step counts, every victory matters.

He can take bumps, our supernatural baby, but we want no more bruises.

I will try to update you as the day goes along, but we need you to dig deep, guys, all of us!

Our Precious Boy

video

Day 29-Such numbers to wake up to!

Rafa's own breaths were garnering 4 CCs until midnight--sounds good...

After midnight, they skyrocketed up to 8 CCs-WOW!

When he was suctioned overnight to clear out his lungs, this number went up to...

Wait for it...

12 CCs!!!!!!!!!!!!!!!!!!!!

Who knows if it can hold? Who knows what today will hold? All we can do is have faith in God's promises to keep our baby safe and move forward with Plan Recruit.

Look for a video to follow later today--we'll keep you posted!

Tuesday, August 11, 2009

Day 28-What a wonderful birthday!

Where to begin with all of the blessings we received today?

First of all, his title volumes are in fighting shape again, anywhere between 6 and 8 CCs--they discovered a whole bunch of goop and goo in his lungs from his two surgeries, inflammation, not being able to cough it up himself, etc., and that was probably part of what prevented his doctors from maximizing on his lungs in the past.

Secondly, the Edible Arrangement was a huge hit! Fruit is fashionable with medical staff, that's for sure...

Thirdly, the respiratory team is aggressively going after "recruiting and conditioning" Rafa's lung tissue. They have a plan in place that sounds very affirming, one that, according to Brian, one of the respiratory therapists, "showed progress" today-YAY! God is great :)

Lastly, Ken, ECMO god, is back on the scene! He is such a source of information and support to us all, we always have happier, smoother days when he's around. Ken was also slowly weaning Rafa's ECMO flow when we left tonight, gently testing out what his system might do with progressively less ECMO support--that's where we're hopefully headed!

I can't tell you how revitalized we are by today's successes, knowing full well how fast and furious the walls can come crashing down again. But for now, the future is bright, the medical community is supporting Rafa and mobilizing everything they have to get him on track, and all of your love and support is making a tremendous difference!

Day 28-HAPPY FOUR WEEK BIRTHDAY, RAFA!

With birthday presents for all!

First of all, they were able to turn off his Amicar drip at midnight because Rafa's dressings and chest tubes had slowed down their ooze considerably. YAY!

In addition, the chest X-ray that was taken after his circuit change yesterday showed no fluid in his chest cavity, which I'm going to assume means they see the same amount of lung tissue they did before the change happened. MORE YAY! (and thank God)

And a certain big boy is four weeks old today! Today's birthday treat? An Edible Arrangement! Aren't you jealous that you're not here to partake?

And now for some pics!

The Thinker

Look at that part! Guess who that comes from?

"Got the cat by the tail..."

"I love my Rafa blankie!"

Monday, August 10, 2009

Day 27-Murky Waters

So...not really sure what to say about today.

It began with a quick meeting with Dr. Jennings who took a look at Rafa's chest X-ray from last night and saw improvement. His lung volumes made it up to about 5 CCs, which is also improvement over where things were over the weekend. We were also told that Rafa was being given Amicar, which is a clot-retaining medicine, to help stem him bloody chest tubes. While this does run the risk of clotting the circuit, we were told that his circuit looked pretty stable and that he should at least get a few days out of this new med addition. This left us feeling heartened and as though the medical branch of Team Rafa was back on it, and we could hope to move forward again.

Then, the medical/surgical team met with Dr. Jennings to decide on a plan of action, and the results of this meeting would turn into our "family meeting," which was nothing like the first one we had. Basically, Dr. Jennings and the new attending (can't remember his name) came back to Rafa's bedside and shared the following information with us:

1. Every good day on ECMO now is borrowed time. We knew that.
2. Rafa will remain on the conventional ventilator until Thursday, when they will try to expand his lungs again with the high-frequency ventilator.
3. If his circuit needed to be changed, it would be a setback, but he would be entering the circuit at 100 negative (basically, outputting more fluid than he's taking on, which will help him "dry out" overall and hopefully open up more space for his lungs to expand).
4. There are still a few tricks in the bag, but not many. Ultimately, his lungs have to grow, inhale, exhale, and retain oxygen in order for him to get off of ECMO successfully.
5. We should celebrate every day we have with him.

While we knew in our heart of hearts much of what was shared with us, it confirmed in a frightening way what we already suspected--if Rafa doesn't grow and sustain lung tissue, we will have reached the end of our road. His doctors seem as committed as ever to pulling out all the stops to save our precious one, and for that we are eternally grateful. But facts are still facts.

Daddy has, meanwhile, been back and forth from the hospital twice already when Mommy calls him to share that, this afternoon, Rafa's circuit has to be changed. The Amicar drip has clotted the circuit far faster than anyone anticipated and it has to be changed. So we three weather the circuit change, Rafa does beautifully in terms of remaining stable throughout, and now...we wait and see. Again.

Changing the circuit is a plus in terms of time bought, but since Amicar is being used to help keep him dry, we can't anticipate that this circuit will last as long as the previous two (ten and seventeen days respectively). Circuit change also comes with swelling, Rafa's great nemesis, which may or may not impact his lungs.

This is also a little boy who's been on a heart-lung bypass machine for four weeks now, which is a great testament to his strength, but it has its own peril, including brain bleeds, infection, septic shock (aka wide-reaching infection), etc.

So we're battling time, the circuit, swelling, and lungs that need to cooperate.

Our baby has scaled mountains before, and our great hope is that somewhere out there, angels can move a few of them out of the way for him and clear him a path.
Rafa has to have his circuit changed today. Please pray for him!

Sunday, August 9, 2009

UPDATE-Back on the conventional vent

So, Dr. Jennings has intervened once again on our baby's behalf and has decided to put him back on the conventional ventilator as opposed to the high-frequency ventilator he's been on all weekend (and has made little progress). What's hopeful about this is that, when Rafa was on the Cold Fire, he made all kinds of progress in terms of his lungs opening up and gaining volume. He's also losing fluid even though he's taking on more blood products, which is a positive sign as well.

It's just frustrating to feel like we have to be the ones chasing down information and doctors to make the best decisions for our baby. We knew he was making progress on the other ventilator, so why wasn't he placed on it sooner?

Let's just pray that this is the choice we need to move Rafa to the next level of his recovery.

Sad Times...

Latest X-ray is a whiteout. Very difficult to see lung anywhere. We're seriously confused and concerned by this latest setback, since Dr. Jennings himself saw Rafa's lungs when he had his first surgery.
We might be at a point where difficult decisions need to be made. We just don't know yet. I called Dr. Jennings to bring him into the loop and hopefully shed some light on the most recent findings. We also have a family meeting scheduled for this week that will also give us information and help us decide what to do next with the options we have.
Please pray for Rafa. And for us.

Day 26-Wait and See

Rafa had a stable night (thank God!) which is very good at doing. He also continues to pee like a champ to bring his fluid balance back to zero.

Thank you to all of those who answered the call yesterday! Rafa didn't end up having a chest X-ray yesterday, but the results of this morning's X-ray are being processed as we speak. I will let you know how they look as soon as I can.

VISUALIZE lung.

BELIEVE lung.

HOPE FOR lung.

Your love has kept him going thus far--if we can truly get him in the homestretch of his ECMO run and prepare him to transition to life off of the machine, his chances for making it skyrocket!

Let's help him fly...

Saturday, August 8, 2009

Day 25-At the Crossroads

This is one of the most important weekends of Rafa's life, if not THE most important.

With his two surgeries behind him, Rafa's body is healing nicely. And now, his lungs need to catch up. They HAVE to catch up. There are days available for patience, but not the weeks we used to have.

Please respond to this post. Let us know you're out there and watching over him. Raise him up in whatever way feels most comfortable to you, but please concentrate on his lung development.

12 to 15 CCs is what we're after. It's his ticket to the next phase.

If you need something to focus on, just look at the face to the left. He's worth all the love in the world.

Day 25-Team Rafa, mobilize!

OK, Team Rafa, we need you to swing into action again!

Not sure what to make of this information yet, since we haven't seen Dr. Jennings and his overnight nurse seemed fairly unconcerned, but this morning's nurse has noted that Rafa's chest tubes continue to "ooze" (blood mixed with fluid) and that it's something they're watching.

He was doing this just as much yesterday when everyone came around to see him and thought him to stable, and that was on Dr. Jennings's watch, so we're hoping that this is more a case of a nurse giving her opinion in not the most tactful way than something to really be concerned about.

But as with everything CDH-related, you just never know until you know.

PLEASE help us keep another emergency at bay! Rafa's already working hard at getting fluid off and opening up his chest cavity--we don't need him working on this as well!

Friday, August 7, 2009

Day 24-A quiet day in Boston town...

Grandma Sherrie and Mommy passed a quiet, sunny day with dear Rafa today. He still doesn't look like himself yet, thanks to all of the swelling/blood products/procedures of the last few days. But right before we left, the little rascal did his best to open his eyes to say hello! We love that stuff.

No big news other than he continues to be monitored in terms of his healing. His chest tubes are outputting but not too much, his incisions are coming along, and his chest X-rays? Well, they're coming along, slowly and hopefully surely...

Keep the prayers coming! All our love!

Day 24-Holding Our Breath

A little ironic for dealing with a baby with compromised lungs, don't you think?

We're more than a little gun shy walking into the hospital this morning, after yesterday's go-round with Rafa's second surgery in 72 hours. But according to his nurses, he had a very stable night last night (thank God!), his chest tubes are draining but have leveled off (thank God again!), and his first chest X-ray post-operation shows much less fluid in the chest cavity and that his right lung is beginning to open up again (third time's the charm).

All sounds good, right?
Well, of course it is, but if you've been following along and can pick up on patterns, we just can't ever tell.

Prince Rafa, however, stays his course, like the Steady Freddy that he is.

Ride on, my wonderful braveheart, ride on.

Thursday, August 6, 2009

Day 23-Surgery complete!

Sorry to have some of you on pins and needles--my phone crapped out, as did our internet connection.

But Prince Rafa has staved back the CDH monster yet again! Dr. Jennings was able to clean out his chest (one teeny, tiny artery near his incision site was making for all of the mess), as well as take a look at his bronchoscopy results which show that his right airway is still propped open!

Rafa got three new chest tubes to replace the three he had, the swelling in his chest cavity is visibly much less, and he was placed on a new ventilator for the night, a high-frequency one to be exact.
Those of you who are still awake, please pray for a restful, bleed-free night for our little one and that his body heals itself back to status quo soon.

They're closing him up...Dr. Jennings should be out to talk to us in about a half-hour. Thanks for the prayers and well-wishes!

Rafa just got into the OR!

Finally! Rafa is in the operating room.
Our hero needs blood and fluid to be
suck out of his chest. He is in good hands.

Still haven't gone down to OR yet--we're in the waiting place. Tell everyone you know to keep Rafa in their hearts today!

Need your help! Rafa has to go back to the OR to invesigate bleeding from his incision. Please pray for him that this is easily fixable!

Day 23-Cycling today? Probably not. My bike is in the shop.

And the roller coaster rides on.

We went from 2 to 6 back to 2 CCs overnight. Our puff still needs more rest, and is telling us as much.

While we want him to cycle off of ECMO, we ultimately want him to cycle successfully. So, like Leo and Rafa Bird, we'll wait by his side until the time is right.

In other news, he had a largely quiet night, though it looks like his peripheral IV was giving him some trouble. They'll probably need to put a new one in today at some point. He seems to big a big fan of his Sleep Sheep, and his nurses are, thus far, very happy to have an additional trick of the trade to help him settle himself down (other than drugs, obviously).

At this point, we're praying for:

1.) Rafa's incision to continue to clot and heal.
2.) His lungs to "dry out."
3.) His ECMO circuit to continue to hold up.

And eventually...
4.) His cycling off of ECMO to be successful.

Pick your goal, and focus on it!

Wednesday, August 5, 2009

Day 22-Do we dare to cycle?

That's the question on most people's tongues in Rafa's world.

With his big surgery over and done with, Dr. Jennings and the respiratory team plan to consider cycling as soon as tomorrow! While this is an extremely exciting prospect, nothing in the land of CDH comes in simple packaging. Rafa's lung volumes have suffered a bit of a setback (from 12 CCs down to 4 CCs) since his surgery, for all of the usual reasons (fluid, darn fluid), but if things can get cleared up by then, they might still give it a go! In addition to that, cycling is no walk in the park. It's an at least one week process, and at any time, Rafa might tell us this is all too much for him, and it's back on ECMO we go. Why is this such a big deal? Because we've already been on ECMO for 22 days and in many ways, the sooner we can get off, the better.

Which leaves our precious one in the middle.

Ultimately, if it's a difference of a day or two, which it looks like it would be, that's OK. We can be patient. Rafa will take this at his own pace, as he has done from the beginning. And it's our job to hold on to the tail of his comet and ride it out!

Keep up the prayer chains and fairy dust! We're so close to getting to a safer, exciting place, and your help is really paying off!

Day 22-Taking time out to reflect

Little Man had a restful, quiet night last night, thank God! His blood pressure was a little low, thanks to the heavy sedatives coursing through his veins, so he was put back on a small dose of dopamine (the blood pressure meds he'd successfully kicked toward the end of his first week on Earth). Other than that, he's sleeping snugly, as every baby should be.

I wanted to take a minute to share with you a couple of entries I found that very accurately describe what we're going through as a family. They both happen to focus on a mother's experience, but I'm sure if you asked Daddy or Grandma Sherrie, they would certainly echo these sentiments.

Whatever your belief system, wherever you hang your spiritual hat, these words ring true. The first is an entry from a blog entitled, "Tiptoeing Through the Tulips," written by the mother of a CDH boy who was also treated at Children's, and the second was written by Erma Bombeck (acid flashback!) in 1980. Thank you, Chanda, for including this story on your blog!

Tuesday, June 9, 2009
Exactly The Same Completely Different.

I found myself explaining Graham for the eleventythousandth time yesterday.

"Birth defect, blah blah, ICU, blah blah, mostly dead, blah blah, miracle, blah, feeding tube, Deaf, blah blah blah, yadda yadda yadda."

I found myself recieving the You Poor Thing look for the eleventythousandth time, and then this comment;

"But you love him just the same right?"

Ummm.... right? I guess? No, actually. Not right. Not the same at all.

I don't love him the same as I love Dottie.

Dottie was all mine the second she was born. All mine to take care of; to feed, and change, and clothe and snuggle and love. Every squeak and squeal as a newborn and infant would elicit a reaction I could feel in every cell of my body. She's always felt physically part of me. Even now at two years old I can't get close enough to her.

She is a perfect little piece of me, walking and talking all on her own, but I can't tell where I end and she begins.

I want to absorb her, inhale her, consume her. I breathe her in, squish and squeeze her, snuzzle her snuzzly parts and it's never enough. It's overwhelming and nearly painful at times.

Like every Mommy and Baby should be, we are our own private little Universe. A place just for us, where nothing and no one can touch us.


The Universe was a much different place for Graham and me. He left my body and was thrust into the arms of strangers, torn away from me violently before any bond could be formed.

I sat by his bedside week after week, wanting him to live, assuming he was going to die, and not seeing him as mine. I held the love back, protecting myself from the hurt I knew was coming when he left us.

It seems selfish now, but I was in survival mode then. I needed to focus on my survival while the doctors focused on his.

Then at around 6 weeks old, he let us know that he'd decided to stay and all of a sudden I had a baby. The bond started to form as I was finally allowed to change his diaper and bathe him and even hold him.

Normal Mommy/Baby bonding this was not. This little thing had fought off the most fearsome adversary, and won. I marvelled at him, revered him, and felt unworthy to be his mother. How could such an important little person be mine? What he'd done was bigger than anything I ever thought would happen in my life, and he was mine?

As humbled as I was to be allowed to be his Mommy, I took him by the little hand and joined him in his fight.

Together we fended off the enemies in the ICU; infections, addictions, wounds, mean nurses. We hid in the trenches and dodged bullets. We fought off all that CDH threw at us and backed out of that ICU carefully, waiting for the next surprise attack.

Seasoned war buddies now, the remaining 6 weeks of his hospital stay were a piece of cake compared to the battle we'd already waged. Nobody dared mess with us. He called the shots and I backed his little ass up.

That's how it's been since. I still don't feel worthy to be entrusted with such a special life. He is other wordly and beyond my comprehension. I may have to look down to see him, but I'm always looking up at him.

I know he's mine, but he's far more than just mine. He belongs to the dozens of doctors, nurses and therapists who kept him alive. He belongs to science and medicine. He belongs to the CDH community and the Deaf community.

I could never hold him as close as I hold Dottie. I don't have the same claim to him as I do to her.

He is his own Universe.

Bigger than all of us.

Gift of Motherhood by Erma Bombeck in 1980

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecelia. Rudlege, Carrie; twins; patron saints... give her Gerald. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and necessary in a mother. You see, the child I'm going to give her has her own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles, "A mirror will suffice."

Tuesday, August 4, 2009

Now that surgery is behind us...

What's next, you might ask?

Well, our baby needs to heal, that's for sure. He went through quite the physical roller-coaster ride himself today, to match the emotional one the adults in his life were on.

Now, we watch his lung growth and ECMO circuit very carefully. We need him to have the necessary time to recover from his surgery, for his lungs to continue to blossom, and for his ECMO circuit to NOT decide to clot up before Rafa's ready for a run at coming off of ECMO. It will be a lot for his body to handle to juggle all three of those variables, and we've just gotten him on the other side of a hill to climb.

Please concentrate your efforts on this: a steady, speedy recovery, an ECMO circuit that continues to be relatively clot-free, and lungs that are up to the task of inhaling and exhaling breath sooner rather than later.

This is a critical and delicate balance to be maintained, one that must remain just so in order for Rafa to have a shot at an ECMO-free existence.

Thank you, friends! Thank you thank you!

Day 21-"When I look at you, I know it's gonna be..."

A lovely day!

Rafael James Carlos Escobar is officially out of surgery and healing well! Here are some highlights:

His surgery began around 8:30 this morning and wrapped up around 1:30 this afternoon, after Mommy, Daddy, and Grandma Sherrie arrived at the hospital for a 6:30 call. The wheels of medical progress grind slow--what can we say?

Rafa remained stable throughout the whole surgery, even though he had some issues with bleeding when they attempted to attach his aorta to his chest wall (all of which was resolved quickly--apparently, Mommy was a bleeder during her c-section! Perhaps it runs in the family.)

Another bronchoscopy and echo were done after the procedure was finished to be sure that 1) the right airway was going to respond to the lack of pressure (so far so good, it did), and 2) that his heart and cannulas were still in good shape (they are).

Dr. Jennings actually SAW his lung tissue on both sides, which he says is nice and pink and full of growing alveoli, the grape sacs you need in order to breathe.

And last but not least, we got to meet Dr. Jennings' sons who were visiting their dad at the hospital. What a magical moment, especially since it re-confirmed for us his commitment to our son. He's a daddy. He knows.

Saying "thank you" to the extended branches of Team Rafa, in heaven and on earth, seems almost trivial in comparison to the gratitude we feel. For the love of strangers, medical personnel (Nurse Melissa and ECMO Ken wore their Team Rafa t-shirts today!), friends, family, and everyone in between, we are most humbly thankful.

And as for our poker game in the sky, and God, the meanest dealer this side of Vegas?

We praise your names, in the name of our supernatural braveheart.

Update 3-They're closing him up! He's only got one more bronchoscopy and echo before they call it done! We'll hear from the doctor within the hour.

UPDATE 2-Surgery is going well. Rafa is rockin'!

UPDATE-Rafa is stable, has taken his anesthesia well, bronchoscopy is same as it was, surgery begins

Day 21-Happy Three Week Birthday, Rafa Bird!

The second biggest day of our lives has arrived! Our precious jewel is in the OR right now, and we anxiously await news of his progress circa 10:00. More news later. Sorry if the format looks funky. I am using my IPhone and it's less than cooperative.

Monday, August 3, 2009

Day 20-And a miracle occurred...

Our baby boy finally got the break he so richly deserved!

Dr. Jennings ordered another rigid bronchoscopy to investigate how things were looking in terms of his upper airways before his big surgery tomorrow. And what he found was absolutely miraculous.

Because Rafa has been so excellent at growing lung, the lung he's grown has pushed out and propped up the airways that used to be so floppy! This means that the only procedure to be done tomorrow is pushing his heart forward so that his right bronchi can continue to expand and strengthen. Not because this is minimal by any means, but it's far less invasive and risky than what was slated for tomorrow and cuts his surgery time by two-thirds. WOW!

Needless to say, we were body-wracked with sobs of relief and joy this morning to hear the news. Miracle Boy has once again exceeded everyone's expectations and set his sights high.

And so have we.

Team Rafa has mobilized and it has won! His name doesn't mean "God healed" for nothing.

And for that, we are eternally grateful.

Day 20-Guess who doesn't have to have his airways repaired tomorrow? The Rafa Warrior! More later...

Sunday, August 2, 2009

Day 19-One Hill Climbed, Another to Follow...

Always seems to be the case.

Dr. Jennings mentioned in passing on Friday that there could be a concern about fluid in Rafa's lungs, as in, in the lung tissue he's already grown. The culprit could be a narrowing of his superior vena cava (SVC), and while there are procedures to correct the problem, this could involve further surgery for our baby beyond Tuesday. The word on the street is that all of this testing is being ordered (echo-cardiogram and a cardiac cath, which means injecting contrast fluid into his heart and lungs to track blood flow) so that his surgeons aren't surprised on Tuesday when they go in to repair his airway. But that doesn't mean we're not scared out of our wits.

While Rafa is a source of infinite strength, he still needs his body to cooperate in order to heal and move forward with his recovery.

He's beat back similar demons before. Let's keep giving him all of the ammunition he needs to stay on the right path.

As soon as we know more, we'll let you know.

P.S. Auntie Edie, he loved "Rafa Bird." :)

Day 19-"Have to Admit, It's Getting Better..."

Just called in to check on the babe, and the latest chest X-ray (from yesterday afternoon, after we were told about the pneumothorax) shows improvement! Hopefully, this means that it's clearing up on its own! Keep thinking those thoughts and praying those prayers! It's still working!

One more chest X-ray this morning to get through--believe with us that it's all gone!

Looking forward to the Cates-Addison clan visiting us this afternoon! I had the great pleasure of teaching with Dot Cates for a year at my previous school, Friends Seminary, and my mother had the great pleasure of being her daughter Julia's nanny for a few years. We're bonded for life.

They're returning from family time in Maine and making a pit stop in Boston to see us--very excited to have visitors!

Love to you all for following, praying, and believing in the miracle of strength that is Rafa...

Saturday, August 1, 2009

Day 18-Rest, Rest, and a Pneumothorax??

Baby boy got a lot of great rest today and cruised through many great naps in preparation for Tuesday's go-round. Mommy, however, didn't do as well in terms of R and R.

Feeling like walking into Rafa's surgery in the dark is very overwhelming. Not because his doctors haven't kept us informed, it's just that none of his support personnel (nurses and ECMO techs) have been allowed to say "he'll make it through Tuesday," and that's a hard reality. I did get in touch with Dr. Jennings this afternoon, just to flat out confirm that he felt Rafa could make it through Tuesday and recover. If anything, he feels the recovery is more major than the surgery itself, and told me that, "if we can pinpoint exactly what Rafa needs (they're doing more testing Monday in order to do so), he'll make it through. It's a done deal."

How powerful a few words can be.

We are still in need of prayers and good vibes, especially since the testing being done on Monday could reveal that the bronchomalacia is in fact better than they'd originally thought, and could be remedied with a somewhat less invasive procedure.

PLEASE PRAY FOR THIS TO HAPPEN!

Last but certainly not least, the latest chest X-ray has revealed a small pneumothorax on the right side of Rafa's chest. This is a pocket of air that is between his lung and chest cavity. If this remains minor, it can repair itself (which it most likely is). If not, he'll need another chest tube put in--this after he "lost" one last night, more by virtue of gravity than anything else.

Again, let's work to give this baby a break, shall we?

Look for "The Thinker" picture in tomorrow's entry!