Thursday, September 17, 2009

Goodbye

So, we're leaving the Boston area tomorrow, and as a result, I'm leaving this blog behind. I'm doing this for a few reasons: I feel as though what I need to say at this point in our process is too raw and painful for a public forum. I also want to keep Rafa's blog full of hope, even when it's tough, and while I was able to do it when he was here, it's harder to do now that he's gone. Finally, I want families who are looking for information and a chance at life to see Our Little Healer as that kind of a resource. Because we were able to find that light in so many other blogs when we were first diagnosed.

We'll still be in cyberspace, in some form or another, but as far as this format goes, we want to leave it as we found it...a place dedicated to our hero.

Mommy and Daddy will see you soon, Sunshine.

What is Everyone Else Doing Today?

Does anyone remember? Does anyone care? Is everyone afraid to say anything? I don't know.

All I know is that our baby passed away a month ago today, and it's truly painful to watch everyone else going about their daily lives as though it's a regular day.

Maybe it's too much to expect for people who knew him to remember everything about him, like we who carry the moving pictures of five weeks burned in our minds forever. Maybe that's what makes us keenly aware of every day, every date, every moment on a calendar that he's not with us.

But even if you don't know what to say, say something. Rafa is our baby. He is our boy. He did exist. He does matter. And he's gone.

And the silence of those who are well-meaning and think they're sparing us pain, it's far worse to hear nothing than to know you are thinking of him, even if it's difficult.

We'd rather know you were struggling with us than without us.

A Month Ago...

A month ago was the most painful, wrenching, and real day of our lives.

Our miracle boy, Rafael James Carlos Escobar, passed away.

So what are we doing today? Packing boxes, tying up loose ends, and wishing his Grandma Sherrie a happy birthday.

What should we be doing today? Complaining about how tired we are, figuring out which of the Big 5 will make ours the happiest baby on the block, noting when the last time was we took a shower before noon, and loving every minute of it.

And wishing Grandma Sherrie a happy birthday.

Tuesday, September 15, 2009

Ambivalence

I can't believe I'm saying this, but I'm really struggling with our imminent departure from the Boston area. We've found a place in New Jersey that we like quite a bit and are looking forward to rounding out its rough edges (read a wood-paneled kitchen!), and we're all but packed and ready to go. But there's a very powerful part of me that is crying out for us to stay put...and I don't know what to make of it.

I think it's because, no matter how I slice it, my baby is still here. He was born here. He died here. And while we will always have the gift of being able to take him with us wherever we go, we are leaving a piece of him behind. And that's very painful to consider.

Not to mention that we've faced some difficult issues with our housing situation, put it all together, and it's a right mess of quicksand and questions.

It's really causing me to doubt my ability to make good decisions. Money's going to be tight. I'm walking back into a situation I haven't found myself in in years...a teacher with no classroom, until December anyway. And I don't really know who I am anymore.

What do you make of being a childless mother? A teacher with no students? Both of these slices of who I am have always been such a source of comfort and peace--even before Rafa was born I was everyone's mother, and I've been teaching long before I had the degree.

But this shiftlessness feels different, more defeating.

Maybe I just have to wait to feel some kind of normal again, the kind I learned how to feel when we lived our life in the hospital, or even the normal that followed immediately after Rafa's death.

Right now, we've landed ourselves back in the waiting place.

Keep praying for us. Life is still hard, even after the flowers and cards have all dried up. It means the world to us to know you're out there.

Wednesday, September 9, 2009

Wise Words

We have now been in a wide variety of situations as grieving parents and as a grieving family, and my heart truly goes out to those I meet who really feel at a loss as to how to talk to us. I happened to stumble across this "wish list" and found it very appropos. For those of you who are reading this and are part of our lives, please don't misunderstand and think that you somehow haven't been of tremendous comfort to us. You absolutely have been. I just feel that, as someone who is now, and will always be, grieved and changed by the loss of our Rafa, that part of the learning behind this experience is to educate. To bring to light a topic and a new way of life that is never discussed, but that so many of us are dealing with. Take from this what you will.

A Bereaved Parent's Wish List

(Author Unknown)

I wish my child hadn't died. I wish I had him back.

I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that he was important to you also.

If I cry and get emotional when you talk about my child I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.

I wish you wouldn't "kill" my child again by removing his pictures, artwork, or other remembrances from your home.

Being a
bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.

I need diversions, so I do want to hear about you; but, I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.

I know that you think of and pray for me often. I also know that my child's death pains you, too. I wish you would let me know those things through a phone call, a card or note, or a real big hug.

I wish you wouldn't expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.

I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that he is dead.

I wish you wouldn't expect me "not to think about it" or to "be happy." Neither will happen for a very long time, so don't frustrate yourself.

I don't want to have a "pity party," but I do wish you would let me grieve. I must hurt before I can heal.

I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.

When I say "I'm doing okay," I wish you could understand that I don't "feel" okay and that I struggle daily.

I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.

Your advice to "take one day at a time" is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.

Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died, and I will never be that person again.

I wish very much that you could understand; understand my loss and my grief, my silence and my tears, my void and my pain. BUT I pray daily that you will never understand.

Thursday, September 3, 2009

How We're Doing...

It's funny to think about what to do with a blog like this. Rafa's story will never end, but our new chapter is just beginning.

We returned to New York for a feel-good visit this past week and were able to see many people who love us, who love our baby, and who are anxious and ready to see us return. We also found an apartment in Montclair, New Jersey that promises to be a wonderfully permanent perch...at least for a little while.

Some days are good. Some aren't. Some moments are beautiful and demonstrate to us so clearly how happy our hero is in his new place, and how readily he shares that happiness with his family on Earth. Some are bone-crushingly sad, and the pain is so present it takes your breath away. Most of these times are hopelessly intertwined.

I will begin back to teaching in December, which I largely look forward to. I'm not coming back under the circumstances I should, and that's hard. But I think that, for the most part, the people who I work with are ready to take me at face value and adjust to this new reality alongside me. I'm lucky to be able to say that. Am I bracing myself for that sadly uninformed parent who asks me how the baby is? Absolutely. Will I ever be truly ready for that moment? Of course not. How can you be?

Juan is heavy on the warpath about finding a job himself, while keeping busy with preparing for our coming move. He's still trying to figure out how to fill his nights, as they used to be spent at the hospital, while forever looking out for Rafa's spaceship.

Grandma Sherrie has many good times to look forward to, including tennis tournaments and a birthday party, new grocery stories to conquer, and is presently the great keeper of the remembrance box.

As for our little healer? Well, Mommy and Daddy greet him every morning and say goodnight before bed. But most times, he's not there. He's busy on his star in the constellation Hercules, tending his flower, getting into mischief, building with blocks, and enjoying peanut butter fudge and endless hugs. If you'd like to look for him through a telescope, his star is brightest in the month of July and can be found at the following coordinates:

RA16h42m40.36s D28(degrees)16'18.85"

Not sure how often we'll be updating on this particular blog, but do check in. We can't tell you enough how appreciative we are of your support, commitment, love, good cheer, and general rah-rah.

And we ride on...

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

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!

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

Day 14-UPDATE

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.

Day 14-HAPPY 2-WEEK BIRTHDAY!

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.