Monday, June 29, 2009

Who knew Liberty Mutual could be so fun?

So, I got brave today after a rough afternoon yesterday and decided to have an outing in the car, in the hopes of clearing my head and filling it with something new. I'm very glad I did! We drove to Westwood, MA, the bustling mecca that it is (note the sarcasm), to pick up insurance forms for registering our car and stopped at a Burger King. As far as I'm concerned, it was as satisfying as a day's walk through Soho and Canal Street--not as many skinny jeans or irritatingly slow tourists, but definitely as soothing to the soul.

Look forward to a pictorial pregnancy update on Wednesday, when I have to get decent next to go to the hospital (nonstress test and consult with Big Ouiser). We'll be at 35 weeks at that point. What a great gift!

Sunday, June 28, 2009

Another visitor!

We're anticipating the arrival of our friend John from NYC in a couple of hours! I know Juan is looking forward to having someone to talk shop with, and by "shop," I mean "Transformers," "Battlestar Galactica," and the like. It will be nice to have a breath of fresh air, with new perspectives and new experiences--see you soon, John!

Friday, June 26, 2009

"Let the sunshine in!"

Going to give sitting outdoors and reading for a little while a shot, since it appears that we may have more than a half-hour's worth of sun today. The perpetual deluge that has been the last three weeks in Roslindale has almost drowned us, so it is nice to think that there is/might be a break in the action long enough to enjoy it.

Juan got out for a bike ride yesterday, Moms got the car fixed (and made some new friends, as she is want to do), and me? Well, I watched the "Real Housewives." Everyone's got their claim to fame.

Baby news: we need to get to 36 weeks, folks. That's July 8th, if you want to put it on your calendars. Whatever voodoo you can do is much appreciated. What's hopeful about this is that it appears as though our doctors at both Brigham and Children's aren't really considering a plan before then, which says to me that they think we can make it that far. HOORAY!

Thursday, June 25, 2009

Here he is!

Isn't he spectacular? I'm thinking he's got Mommy's nose and mouth, and Daddy's facial structure--what do you think?

Wednesday, June 24, 2009

Wondrous Wednesday

What a day! Overall, a great success--here's the blow-by-blow:

Limited ultrasound-got some great pics, baby boy is estimated to be about 5 pounds, and everything looks as it should.

MRI-the wonders of Ativan and "Freaky Friday" cannot be overstated! I was actually surprised when it was over! Turns out the results were not significantly different from the one we had a few weeks ago, so a meeting with Dr. Jennings ended up being unnecessary (but this was after hanging out in a conference room napping in a recliner for a couple of hours). And the best part: NO MORE MRIs!

Nonstress test-there's a reason it's called "nonstress"! No contractions, baby's heart rate and oxygen exchange are super, and we're having another one next Wednesday.

Consult with Big Ouiser-NO MORE CERVICAL CHECKS! HOORAY! Just a chat about how I've been feeling, making it to 36 weeks and what "the plan" will be for the following three weeks (still don't know what that is yet, but hopefully will by that landmark), and we were finally on our way.

Once Daddy gets it uploaded, we have a gorgeous 3D picture of Mr. Rafa to share--hopefully, it will be up before bedtime tonight!

Have a drink on us!

Tuesday, June 23, 2009

And the rain keeps pourin' down...

Don't know what it's like where you are, but we're getting ready to build an ark soon!

Tomorrow is our marathon: limited ultrasound, MRI, meeting with Dr. Jennings, nonstress test and lastly, consult with Dr. Wilkins-Haug. I have no idea how I'm going to make it through, unless I can sneak a nap on a gurney somewhere. Word on the street is that we will not have a delivery plan tomorrow, and probably not until next week or the week after. Grr. Being patient is hard.

But if Rafa could do it yesterday, we can do it tomorrow!

The baby's nook is coming together nicely! We put all of his clothes in drawers and need to hunt up some missing packages of other goodies before his arrival.

I just want to say a heartfelt thank you to those of you who comment on our blog. It's so affirming to see the responses of those who love us and are praying for us on our journey. Checking for comments is one of the highlights of my day!

Monday, June 22, 2009

The ECHO is loud and clear!

Rafa had an excellent ECHO reading this morning!
He has a nice, strong, well-formed heart with no visible damage from being pushed around by the other organs in his chest. SO nice to be leaving the hospital with a huge piece of good news...
Why this is so important:
1. A normal heart means the likelihood of an undetected chromosomal abnormality compromising his recovery is far less.
2. A strong, healthy heart will help him to combat any pulmonary hypertension he's going to experience while his heart and lungs work to strike a balance.
Raise a glass! Have a hot fudge sundae (we did)!

Sunday, June 21, 2009

Rough Day

'Nuff said. Hopefully, tomorrow will be better.

Saturday, June 20, 2009

Visitors and Put-Together Furniture

We'll have lunch company today, which is very exciting! A good friend from way back, Justin, and his girlfriend, Casey, will be coming by for pizza and conversation, and I'm happy to have new people to look forward to.

Rafa and I have begun a new morning and evening ritual, which involves talking about how important it is for him to stay put for four more weeks and encouraging his liver to move down and his lungs to grow. I think he gets it. Or at least, I'd like to think so...

And last but not least, Juan/Daddy put together some new pieces of baby furniture! We now have a co-sleeper, a crib, and a set of shelves! How fun! It's gone very far to give me some small bits of joy. Every shred of normal counts. We've ordered art and some bedding that should be arriving soon to help add some color to Rafa's nook.

Where did the sunshine go? Literally, not figuratively speaking.

Thursday, June 18, 2009


While none of these are set in stone in their current form, here are the four options that the Fetal Review Board will be choosing amongst in coming up with our delivery plan:

EXIT to ECMO (requires c-section and delivery at Children's Hospital Boston)
Delivery with ECMO in the room (requires c-section and delivery at CHB)
Delivery at Brigham and Women's Hospital with transport to CHB to be connected to ECMO
Delivery at BWH with comfort care

To paraphrase Meatloaf, three out of four ain't bad. However, Number Four is in no way a choice. I think it's fancy for, "He's born, we hold him and snuggle him, then we let him go..."

Have they met us????

I seriously doubt that that's even on the table, but it will be very important to know where we stand going into this.

I've been told our surgeon is a cowboy. Well, if that's the case, he'd better be ready to ride hard and go home late, because that's the only plan we're interested in.

"The nearest EXIT may be located behind you..."

We got confirmation today that EXIT surgery (a.k.a. c-section) is being discussed in our case. This is probably only a short jaunt to EXIT-to-ECMO, which involves the baby being delivered via c-section, placed on a breathing tube, and then, immediately attached to an ECMO machine. For those of you who don't know, an ECMO machine buys a baby's lungs and heart time to grow and develop before they're asked to work on their own. As scary and severe as this may sound (and it is), it's actually a plus that they're even considering this procedure for Rafa, as it's not a guarantee they even offer this option if they feel the case is too dire.

Unfortunately, no one can give us any clear answers yet since our case is still up for discussion at the Fetal Review Board. Hard core stuff!

Appointment updates:
Next Monday=fetal ECHO (was normal last time, heart was just a bit squished, let's hope that's still the case)

Next Wednesday=limited ultrasound at AFCC at 7:45 AM (eek!)
MRI at 9:30
Nonstress test at Brigham at 2:30
Consult with Dr. Wilkins-Haug at 3:20
Meeting with Dr. Jennings to discuss final delivery plan TBA

Are you tired yet? I am :P

Looking forward to a possible visit this Saturday from a dear college friend, Justin, and his girlfriend, Casey, who was so helpful with all of her midwife expertise when I was first put on bedrest--hope it happens!

Last but not least, Juan might be riding his bike (the kind that runs without gas) in a tour around Boston this Friday!

Wednesday, June 17, 2009

A Bit of a Wash

So, today was our ultrasound and consult with Dr. Wilkins-Haug (no cervical check in the classic sense--we'll come to that later). The ultrasound was actually another biophysical profile, one that our beautiful, thriving baby boy passed with flying colors, an 8/8 to be exact. However, when it was all said and done, there was to be no cervical check via ultrasound wand. We were all a little curious about that, but figured we'd get the skinny from our doctor when we saw her in a couple of hours.

We were then met for a short visit by two lovely people, our doctor friend Chloe and our nurse friend Julia, both of whom were a ray of sunshine, hugs, and concern. After these brief commercial interruptions, we began the waiting game: waiting to go in, waiting to weigh in (178 lbs-WHOA!), waiting to see the doctor. This brought us up to an hour-plus playing the waiting game. At long last, Nurse Taylor Toomey, a wonderfully colorful character in the MFM practice, came in to tell us that yes, in fact, it was OK to not have our cervical check during our ultrasound because Dr. Wilkins-Haug (whom you might hear us refer to as Big Ouiser) was going to do it, manual-style.

Don't know if anyone reading this has had the pleasure, but believe me, it is nothing to play with.

Once that unpleasantry was over and done with, it was revealed that I'm dilated about 1 cm. This is part of the natural progression of things, but not news I wanted to hear. Up until this point, I've only been effaced and the gates to the birthing kingdom have been closed. But now that they're opening ever so slightly, I'm freaking out. My doctor then shared two seemingly conflicting pieces of information--you be the judge:

1. Because my uterus has been "a quiet place" for the past five weeks, she feels it's very likely that I can make it to full term (37 weeks).

2. However, babies with complications can go into preterm labor without warning, so you never can tell.


I'm calling this a wash and hoping that the shop stays closed until at least mid-July. Keep sending those positive vibes, friends and family!

Our Not-So-Silent Partner in Crime

It occurred to me that, up until this point, I have been remiss in neglecting to mention our (mostly) quiet backbone, our rock with a red top.

That's right, you guessed it!

My mother, Sherrie, who has soldiered on with us every step of the way, never asking anything for herself, the ultimate in motherly self-sacrifice. I think I can speak for Juan when I say, she's our heroine. Most of you reading this blog already understand her significance in our lives, and for those of you who don't, you have a real treat awaiting you...

P.S. Sorry, you visual learners, I'm never going to get a picture of her up here. She avoids cameras like the plague.

Ultrasound, cervical check, and consult this afternoon! Send us your fairy dust!

Tuesday, June 16, 2009

Pedicures and Helpful Hints

First of all, thanks for checking out the two pics from Kristen's visit! Better late than never!
Secondly, my outing of the day (I'm allowed to be "off" bed rest for about an hour each day) was to get pedicures with Mom! SO satisfying! I'm sure it's improving the experience of the doctors, nurses, and technicians to be looking at cleaned-up, pretty toes.
And lastly, big thanks to Dot, because I've finally found a one-on-one CDH connection online! Her name is Kelley and she has a four-year old son who came through the SHANDS CDH clinic at the University of Florida with a left-sided diaphragmatic hernia. I can't tell you what a wealth of information, support, and helpful tips she's already been, only after 24 hours! The biggest takeaway suggestions:

I'll be taking a snuggly/teddy bear with me to the hospital to fill the void in my arms left behind by not being able to hold Rafa right after he's born.
Kelley's son Michael's lungs tripled in size only 13 hours after his surgery to move his organs to where they belong.
While he had pulmonary hypertension and reflux at some point during his recovery, Michael has been released by his cardiologist, pulmonologist, and gastroenterologist because of all of the progress he's made.
Most importantly, Kelley feels Michael pulled through because he always knew there was a family waiting for him on the other side, loving him, fighting for him, and Rafa's already got that in spades.

What a blessing she, her son, and their story have turned out to be!
Wish us luck tomorrow--we have another ultrasound, cervical check, and consult with our OB, Dr. Wilkins-Haug.

Monday, June 15, 2009

A Lovely Visitor

My very good friend from back home, Kristen, was in town this weekend visiting us, lending support, brawn, and good humor. It was the first time since moving here that I felt I could fully concentrate on someone/something else and forget what we're going through for a little while. Not a bad thing...

She taught me how to knit, helped Mom and Juan to move furniture around, and even spilled water with me in solidarity at brunch yesterday (lots of clutziness on my part these days)! Go Auntie Kristen!

Kristen has always been a quiet, introspective, wise presence in my life, and her unending kindness and good spirits were a welcome breath of fresh air. She's welcome back any time...

P.S. Stay tuned to this entry later today, as there will be belly and family shots galore!

Saturday, June 13, 2009

A Ray of Hope (they're always out there, as long as you know where to look)

Part of what's so frustrating about being a CDH parent is that you're constantly on the lookout for "your story": what other babies have your lung volume, your predicted outcome, your due date, etc? It's often a hard match to strike, as CDH is such a fickle and mysterious disease that there's no end to its permutations. But after returning to a blog I'd visited before and digging a little deeper, I think we've found our match!

I encourage you to follow along with as we have been. Ella is almost two years old and her CDH presented very similarly to Rafa's. Her family was quoted similar facts and figures to ours, she was even due in early August (but came a little earlier)! I suspect that there are many aspects of her ECMO experience, surgery, and slow road to recovery that we'll have in common, so if you're interested in seeing where we are and where we're going from another perspective, I highly recommend you check it out. And she's a gorgeous baby to boot. I found great peace and hope in her story last night, even in its darkest corners (and believe me, they're there).

It's the power of not being alone, I guess.

Rafa will see his first farmer's market today, as the sun has returned to Roslindale! Woo hoo!

Friday, June 12, 2009

Dear Rafa...

I woke up today with many thoughts on my mind, some of them happy, some of them sad. But I thought I would share with you the last one I had. It comes from an unlikely source, but one that is no less wise. John Leguizamo, a funny, smart man, stood over his son's crib and said,

"You will face your demons and you will win.
Because I love you."

You are our hero, little warrior.

Wednesday, June 10, 2009

32 Weeks and the Rug Gets Pulled Out From Under Us

We came to Children's Hospital Boston through the grace of fortune and a dear friend who is a high-risk OB at Brigham and Women's Hospital. Ever since then, we've found the doctors, nurses, and staff to be nothing short of miraculous in their genuine love and support for families in crisis during what is supposed to be a joyous time.

And so, honestly, we couldn't have heard this difficult news from anyone more tactful, honest, and optimistic: our baby boy has gone from a lung volume (how much usable lung he has) of 12 at 24 weeks, to 7 at 32 weeks. This means he has a 50/50 chance of making it. What was so jaw-dropping about this news was how many positive milestones Rafa has met up to this point, and to think that he has so little lung in an otherwise "perfect" body was a hard pill to swallow.

We're now looking at ECMO for sure, possibly EXIT surgery, and a long, difficult road ahead. What's keeping me afloat is the idea that our baby has already met so many challenges head-on and been successful (positive ECHO finding, no other chromosomal abnormalities, surviving and thriving in growth and development), and thank goodness he's been able to do all that, with so little lung volume! That's what makes him our little healer...

More soon, complete with pics, I hope!