Back to life...

back to reality
-Soul II Soul, "Back to Life"

Reality. Is this our new reality now? I am slowly - very slowly - trying to return to some semblance of a routine, a normal life, but it's proving difficult to find any kind of pattern to our days. And that is just part of why it's been so long since I've posted.

I said this to an old friend today (and made myself laugh with it!) so I'm going to use it again here. I feel like I'm supposed to say, "Whew! Sure am glad that near death experience for my child is over. Now I can get back to that pile of dishes I was working on." It's like I'm supposed to just pick up where I left off, like everything is just fine. Truth is, I don't feel fine. I don't know how I'm supposed to feel. I don't know how to describe how I do feel. But "fine" really isn't on the menu.

I'm worried. I go in to check on Jay multiple times every night to see if he's still breathing. I worry he'll fall and have massive, coumadin-induced internal bleeding that I don't even know about. I worry that his heart rhythm isn't right. I worry that I'm pushing him too hard when we practice what he's learning in physical therapy. I worry that he's not eating enough. I worry that the only foods he'll eat are Goldfish, hummus, and whole milk.

And that's just my Jay worries! I worry that Luke STILL isn't over his cough/congestion/sinus infection, even with antibiotics. I worry that he has some undetected heart defect that will pop up at seven months old and steal him from me. I worry that I won't be able to keep up my milk supply and I'll have to serve him beetle-infested formula. (Seriously, did you hear about the formula recall? For beetles?! So gross.) I worry that he isn't getting enough attention and that the only one-on-one time I spend with him with him is feeding him. With one hand. The other hand is busy checking my email on my phone.

Hell, I'm a worry wart. I worry about a million things. Some of my worries are logical. Some, not so much. Some are significant, some so minor they don't deserve the mental energy I give them. But still, I worry.

I'm frustrated. Jay's still a two year old, and they don't call it the "terrible twos" for nothing. He can drive me batty with his whining, demanding that I drop what I'm doing to watch him unscrew a plastic bolt out of a pre-drilled plastic chunk of "wood." For the hundred millionth time. RIGHT NOW.

I'm struggling with guilt. Seven weeks ago, I thought I'd never again see him play with his tools. How can I say no to that adorable little face who simply wants my attention? (Even if he wants ALL of my attention?!) These other things I'm doing - talking to the cardiologist, getting prescriptions refilled, feeding Luke - they can wait, right? I should appreciate every single moment and celebrate his two-year-old-ness, right? Arggghhh!

I'm exhausted. Luke is sleeping through the night more often than not (Hallelujah!) but I'm still struggling to catch up from many sleepless nights. And that exhaustion leads to my short fuse, and I start spinning on the Frustration-Guilt-Exhaustion Wheel, and it's not pretty.

So, I'm sorry if this comes across as whiny and ungrateful. Truly, I am so genuinely and completely happy to have my child happy and healthy. I am so happy to be home that I don't want to leave, even to go to the grocery store. The four of us went for a walk tonight, and I just wanted to freeze that moment in time forever, listening to the magical sound of Jay's laughter. I am blessed beyond words. But I'm still not sure how to reconcile that genuine joy with the grind of daily life. I'm trying to find our normal.

Let the good times roll..

I don't care if you're young or old
Let's get together and let the good times roll.
--BB King, "Let the Good Times Roll"

Since getting back home, we've been super busy - there's quite a list of doctors' appointments, lab work visits, physical and occupational therapy sessions that are keeping us out of the house (and, for the most part, out of trouble!). But even more importantly, there's a an enormous list of people that we want to catch up with.

To start, yesterday we visited our friends at Jay & Luke's school - and it was like homecoming. Everyone seemed glad to see the boys and ready to welcome them back to NCSU Bright Horizons. They have treated Jay like one of their own - and he's never even spent a day there! Apparently being Luke's brother gives you special treatment. We are incredibly grateful to have found a wonderful center that can take both of them.

We squeezed in Luke's 6 month checkup (only a month late!) then we trekked over to visit Gabby and fam. We hugged, we laughed, we ate Aunt Mandy's fantastic empanadas and (wonder of wonders!) managed to make it out before either of the kids had a meltdown.

But those two visits took half a day, and we're realizing that it's going to take forever to see everyone we want to see...

So, we're throwing a Welcome Home Jay party!

Please join us this Saturday (9/25) for a big ol' backyard bash, Foster-style. The gathering will start around 4:00 and continue until we're celebrated out (or until the mosquitoes eat us alive - whichever comes first). We'll grill hot dogs and load up the crock pot with baked beans. To round out the meal, please bring a snack, side, drink, or sweet treat to share. There will be a yard full of toys for kids of all ages, but you might want to bring your own lawn chair. But no gifts, please!

Yes, we realize that by putting this out on the blog, we could have a really big crowd. And that's the idea! Seriously, we have been so overwhelmed by the generosity and prayers by so many of you. And we really do want to see you, hug you, and thank you for being a part of this difficult journey we've been on. We really mean all of you--friends, family, coworkers, neighbors, and anyone else who wants to come. Don't know where we live? Email me. So that we know how many hotdogs to get, let us know you are coming--email, comment on the blog, facebook, or whatever works best for you.

So, please come as we celebrate life and finally returning home.

And if the world starts getting you down...

There's room enough for two
Up on the roof (up on the roof).
--The Drifters, "Up on the Roof"

So through this ordeal, Jen and I have often wondered what Jay's view of it was. He made it pretty clear the last couple weeks how he felt about things. Playroom? Good. Hot dogs? Great. Medicine? Only if I have to. Phlebotomists? Not them again! In other words, he returned to being a pretty normal two year old who had spent way too much time in the hospital.

What we really wondered was if he had any recollection of his arrest, being on ECMO, and being on the ventilator. We were pretty sure he wouldn't since he was getting enough morphine and midazolam every 4 hours to lay me out for days. But we still wondered did he dream, did he see the bright light at the end of the tunnel, or did he talk about tools with his namesake Pappaw Jay and his Papa Perry?

At one point in the hospital, we were discussing that he had been asleep for a long time. We asked if he had any dreams. He didn't really have much too say, and certainly didn't shed any light on it for us. So we let it go.

Fast forward to this weekend. We were saying our prayers before bed which usually consist of Jay thanking God for "all my people" and for whatever random object he spies next ("Thank you God for my bed, thank you for the ceiling." You get the idea). After his prayer on Friday night, he asked me, "Where does God live?"

"Uhh...he's kind of...everywhere" was the best I could do on short notice. Thinking quickly to something we learned from our favorite children's minister LL, I asked him, "Where do you think God lives?"

He replied with the less theological, but much more obvious answer, "At his house." Then I got, "Daddy, where is God's house?" I considered the sky or heaven, but went with "Church," which seemed to be in line with where he was going. Next up on the wheel of two year old theological questions was, "Can I go see God?" I was thinking, "Jay you have come closer to shaking his hand than you may ever know," but I figured I shouldn't go there, so I said (ambiguously), "Yeah, someday."

You know where my mind was going, so I had to ask, "Have you ever seen God before?" Surprisingly, he responded, "Yeah." Intrigued, I asked, "Where?"

Wait for it.

Any preachers out there, this is going to be your next sermon.

You know from the mouths of babes, and all that.

His response...

"On our roof!" He got really excited and then added, "I helped him down, and he gave me a big hug!" Either he's got a great imagination and doesn't remember anything about the time he was unconscious or it really was a lot of fun hanging out with God Almighty "Up on the Roof." Either way, I'll sleep better at night.

It's just another ordinary miracle today...

Life is like a gift they say
wrapped up for you every day
open up and find a way
to give some of your own
Isn't it remarkable?
Like every time a raindrop falls
It's just another ordinary miracle today
-Sarah McLachlan, Ordinary Miracle
(great song - watch the video if you don't know it!)


Over the past 6 weeks, Jay has seen quite a few miracles. I don't mean to trivialize open heart surgery, but getting a new heart valve that works as good as new was one of the smaller miracles he survived. When Jay arrested the night after his surgery, they performed CPR on him for well over an hour, and continued doing chest compressions WHILE the surgeon placed the cannulas in his neck for bypass. Just imagine that for a second - trying to cut open a tiny vein and an artery just a few inches from where someone is pounding on his chest. Miracle.

The following day the attending cardiologist was discussing what had happened during the incident. (One nurse spent the entire time writing down everything that they did to save him and every drug he was given. Jay was still connected to the monitors, so they had a complete record of his blood pressure, etc. the entire time.) His oxygen saturation never dropped below 70% during the time they were performing CPR. While 98-100% is normal, there are people walking around living normal lives with oxygen sats in the 70s. Pretty impressive work.

Derek and I were talking about all the things we see differently in hindsight. When the surgeon came in on ECMO day 2 and asked them to turn down the sedation, he was wanting to see if he would move. Looking back, we realize that he was trying to determine whether continuing on ECMO was worth it - trying to know whether his brain had gotten enough oxygen during CPR to keep him on life support.

It was no small miracle that he had no problems on ECMO. He never had any of the common issues - swelling, blood clots, ECMO circuit cutting out. And it's nothing short of a miracle that after a week of not pumping, his heart was able to kick back in when he came off ECMO. It's a miraculous technology that saved his life.

On Tuesday evening when we had finally been given the get out of jail free card, we met with our awesome CHOP cardiologist, Dr. C. She hugged us and talked about how happy she was with how he was doing. I asked her to say - honestly - whether this was the outcome she expected during the ECMO days. Her sly smile said it all, but her simple answer was as honest as I had asked her to be: "No, it isn't." She went on to say that after ECMO sometimes the heart recovers but the brain doesn't. Other times, the brain recovers but the heart doesn't. She told us that his medical team was still talking about what a miracle it was to see him laughing and talking and trying to jump down the halls of the CCU.

I don't think we really expressed on the blog just how serious the heart transplant discussion got toward the end of the ECMO week. While he tolerated ECMO very well, seven days is really pushing the limits of how long it can provide support. They were getting ready to order a Ventricular Assist Device, the Berlin Heart, in the event that his own heart function didn't recover. The VAD is designed as a bridge to transplant - a machine to support the heart while you wait (days or weeks or months or more) for a transplant. That thought was terrifying to us. The thought that another child would have to die so that ours could live ... it's just awful.

From this:

To this:


Miracle. There's no other word to describe where how we got here. It is truly a miracle to have our son back the way he was before this awful journey began.

My blessings are in front of me...

it's not about the land
I'll never beat the view
from my front porch looking in
-Lonestar, My Front Porch Looking In

With some help from AJ and Poppper, we successfully packed up all the stuff we've accumulated over the past 6 weeks and returned HOME! Not only was it great to come home, but a wonderful group of friends cleaned our house and stocked our fridge. Unfortunately, unloading our 6 weeks of stuff has hidden the carpet they worked so hard to vacuum. We have some amazing friends.

They also converted Jay's crib into a toddler bed, so that it will be easy for him to get in and out of bed as he continues to recover. He's still on "sternal precautions" (for some reason, I find that term amusing) which means we can't lift him under his arms. At his age, it's time to move into a big boy bed anyway! I was a little worried that he wouldn't like it, so we told him that his 4 year old idol, T., had fixed it for him. It was kinda true - T. was here during the bed conversion, though I suspect he was busy exploring Jay's toys rather than working. When Jay woke up from a nap this afternoon, he wanted to call and let his buddy know that he liked his new bed, so I guess he's not mourning the loss of crib sides too much.

People kept telling us that Jay's appetite would come back when we were home. But I didn't really expect it to come back the instant we walked in the door. All he's been willing to eat in the last week or so is meat. No lie - when we ordered spaghetti with meatballs in the hospital, he ate all the meatballs and ONE strand of spaghetti. At RMH, he ate nothing but hotdogs. He wanted them for breakfast. (We want him to eat so he'll stop losing weight, but I draw the line at hotdogs for breakfast.) But as soon as we got home, he said "I'm hungry!" and ate a regular lunch of deli turkey, black beans, chips & salsa, chicken salad and a banana. (I never said his combos weren't a little weird, but at least there's some non-protein options in there...!) So I'm hopeful that the appetite really is back, and the good food habits will return as well.

Luke is now re-learning how to fall asleep, thanks to a bit of baby boot camp. While I hate to call it "cry it out," it pretty much is. We've let him scream for 10 minutes, go back and settle him down, then put him back into the crib. Wash, rinse, repeat. Took him an hour to settle for his nap this afternoon, but only 55 minutes to settle at bedtime. Progress is progress, right? We are open to suggestions if any of you baby whisperers have tips on how to break a month and a half of sleep spoiling.

As for me & Derek, we've never been so happy to plop onto our couch and watch some Wolfpack football on our own TV. We've done the most mundane things - sort the mail, pay a few bills, pick up some cat food at the grocery store, feed the kiddos some dinner. It's almost like we never left.

Home...

Where my thought's escaping
Home
Where my music's playing
Home
Where my love lies waiting silently for me
-Simon & Garfunkel, Homeward Bound

Homeward bound!! I can't even begin to tell y'all how excited I am to be headed to the airport in the morning. (and I'm even more excited that my dad and my AJ get to be the ones who figure out how to jam all this stuff into the CR-V!) Derek and I are flying with the boys since the docs thought it would be less stressful than an 8+ hour car trip. And they were probably right - though it's a bit odd they're concerned about my stress level. Oh wait, it is probably less stressful for Jay, too.

The area where CHOP is located is known as University City, and it's squeezed in among Drexel University and UPenn. On our pre-op visit, Jay was super-excited about the Drexel Dragon, named Mario (an interesting little tidbit we learned from one of our fab nurses who graduated from Drexel). He wanted to ride it, and we told him that we would when he was out of the hospital. (Who knew that would be nearly 6 weeks later!) And without even our mentioning it, Jay started asking in the hospital to "see that dragon." Who are we to deny a kid such a simple pleasure?


Gimme 5, Mario!

After our dragon-slaying adventure and a nap, we decided to have a little family fun and check out the Philadelphia Zoo. We've now experienced the first zoo in the country, the first children's hospital in the country, and the first Ronald McDonald House. Boy, lots of firsts in Philly! We had a great time in spite of the fact that the zoo (and it's parking!) are way overpriced. We saw all kinds of rare animals, but Jay insists that his favorite part was the ducks. Yes, the Canada geese we saw on the pond in the middle of the zoo. The same Canada geese we despise in our parking lots, our golf courses, our lakes in good ol' NC. Guess the kid just wants a taste of home.


Truly, it is simply a miracle to see how far Jay has come. He is walking (a bit wobbly but improving), talking up a storm, and is in every way the adorable, lovable, awesome little boy we brought here with us. Tears of joy.

So, we're headed home tomorrow and can't wait to see you all again!

Cause I live and breathe this...

PHILADELPHIA FREEDOM!!
Elton John, Philadelphia Freedom

Does the song say it all?! We're free!!!!

Late yesterday afternoon, we finally got the results we'd been waiting for, and it was happy news!! Jay's INR was 2.58 - which is not only above the 2.0 they were looking for but in the range we've been aiming toward all along!! Hallelujah! Have I used enough exclamation points yet?!?! I don't care!! We're free!!!

From then it was a complete whirlwind of getting prescriptions ordered at a compounding pharmacy in Raleigh, getting enough meds to tide him over for the next few days, discharge instructions, frantic packing of the stuff we'd accumulated, and saying goodbyes to some amazing folks we met there. I was not prepared for how emotional those goodbyes would be. I shed a few tears with some of our favorite ICU nurses, including the charge nurse who performed CPR. We are so amazingly blessed to be bringing home a healthy kid.

We're at the Ronald McDonald House now, and we're bound for good ol' NC tomorrow. We will share pictures and details soon - but in the meantime we've got to take a picture of Jay slaying the Drexel Dragon that he's been begging to see...