29 May 2010

My HERO

Exactly three and a half (yes, only 3.5) days after being rolled out of the OR into ICU, Sheridan was discharged from the hospital.

We walked out those front doors and he waved and said bye-bye (actually it's more like buh-buh-buh-buh-buh-bah, but he's working on it!).

funky picture of me, but I love his fresh-out-of-the-hospital-crib look

He slept the whole way home. And arrived to the BEST homecoming EVER! Becca and her family made heart streamers and decorated the outside of our home.


And filled the living room and breakfast nook with helium hearts, stars, and a monkey with a "welcome home" balloon.


Here he is walking with Gary to the front door (showing off our new landscaping we did a few weeks ago).


I grabbed a quick shower (trying to scrub the hospital off me, yuck), and when I got out I heard the tell-tale sound of crawling pitter patter. I couldn't believe it. Yesterday he didn't even have full head control back (more about that in another post), this morning he could barely sit without some support.

Yet this afternoon, within 10 minutes of being home, Gary laid Sheridan on his back on the ground, and Sheridan rolled over on to his tummy, popped up on all fours, crawled out of his room out to the living room, pulled to stand on one of his music tables, and pushed it across the room to walk.


HOW FRICKING AMAZING IS THAT?!

He is still a bit wobbly at times - still trying to regain his balance - and he's not quite as fast as he was right before the surgery, but he's only a little bit slower. This evening he just picked up right where he left off, really. He even helped me with the dishes.


He's even experimenting with standing independently for 2-3 seconds at a time, and he'll take an independent step to cross over to something he wants. It makes me nervous so soon after surgery, but so far he's doing fine...

Just a few more things before I sign off:

  1. I apologize that I didn't do updates throughout our stay at Stanford like I planned/promised. I didn't have as much down time at the hospital as I expected (everything just progressed so quickly), the wifi throughout the hospital was spotty and even where I could access it the connection was painfully slow, and there were no electrical outlets for me to use in Sheridan's rooms (I stayed with him around the clock and outlets are for medical equipment only - they had them locked even if they weren't being used)
  2. I have LOTS of pictures and information I plan to share about the surgery, Sheridan's progress, etc. So I definitely DO intend to share everything, it will just be little more retrospective than planned.
Also, I just want to say that we appreciate all of the love and support we received from you. There is no way I could have survived this without it - especially our family who traveled to be with us the day of the surgery, and my mom who stayed 4 days so she could support me and Gary. A special thank you to Jen, Monica, Sheree, and Jonna who created the best gift a little boy in need of lots of love and healing power could get. And to Jenni whose little ones gave Sheridan a fantastic care package to help him pass the time in the hospital - everything was put to good use!

We're not out of the woods yet... Sheridan's three biggest wounds (the sternum and two drainage tube holes) have to heal over the next 6 weeks or so. There is still a major risk of infection, so your continued support is much appreciated.

25 May 2010

CVICU

About 20 minutes ago we saw Sheridan as he was being wheeled into ICU  I cried tears of joy  I will post updates and pictures soon  Just waiting to see him - they will call us back in 15 minutes  CAN'T WAIT TO SEE HIM!!!!! Seeing his little curls go by was one of the best moments of my life!!!

Sheridan is in the OR

Sheridan is in the operating room right now. The anesthesiologists are likely just finishing getting him ready for the surgeon (it takes about an hour before they are ready to start the procedure).

We woke up at 5:30 this morning to bathe Sheridan and scrub him down with the special medicated wipes the hospital gave us. We checked in to the surgery center at 7am. They almost immediately brought Gary, me, and Sheridan back to a room to check his vitals, change him into a gown (be sure to check out the super cute pics below - that boy can rock even a hospital gown), then we went to the playroom for the kids who have been cleared for surgery. After tearing the room apart playing for a while, we went back to the operating holding room where we met the anesthesiologists (both of whom Sheridan really liked). The plan was for Sheridan to have an oral sedative so he would fall asleep with us and then they would wheel him down to the OR after he was asleep. But he was so happy, and actually reached out to one of the anesthesiologists for her to pick him up. So, she did, he smiled, and she carried him down to the OR in her arms. He didn't even look back at us. That's when I cried for a few minutes, but then I was good.

Here's a few pics from our morning...

This is the poster I made for the surgical team. The anesthesiologists carried it into the OR for the whole team to see. Just a little reminder for them about who they are working for :)

Internet access is still pretty shoddy in most places. But I will do my best to continue to post updates throughout the procedure.

Quick update already :)  The surgeon (Dr. Reddy) just came in to see us before he starts the surgery. He said he'll be starting in about 15 minutes. Lots of love to my brave baby!!!!

24 May 2010

Surgery Check In: 7am Tuesday

It's official. We're a go for tomorrow morning.

Today was pre-op (A.K.A. 6 hours of baby torture). Sheridan had an echocardiogram, an EKG, a chest x-ray, and (the worst of the bunch) blood test. He was over tired because he only got 9 hours of sleep (he's used to 12), we woke him up uber early for the appt, and people wouldn't leave him alone. None of the tests/exams is too bad by itself (except the blood draw), but put them all back-to-back and then ask the poor kid to meet with a seemingly endless line of nurses, physicians assistants, etc. afterwards and... well... there's only so much a baby should have to endure.

But he was a total trooper, and only had a rough time with the blood draw (his blood just stopped coming out of the first vein, so they had to poke him a second time in his other arm). Gary was holding him during it, but Sheridan cried so hard he could only breathe those stutter breaths, you know what I'm saying.

Here's the only picture I took during the whole ordeal (my mom holding him after I sang to him and calmed him down - of course he immediately wants his Nonna!)...


So, tomorrow we report for surgery at 7am. Gary said I'm not acting like myself. He said my stress is showing (I was stalling Sheridan's bed time to play with him and give him way more kisses than any baby should have to endure - it just so happens he likes it).

I will say the surgical team and anesthesia team did a great job walking us through the surgery step-by-step (I have to try REALLY hard not to let the tears come when we're talking nitty-gritty of the surgery). But I think he's in excellent, capable hands.

So, as I bide time this evening, just thought I would post a couple more pics from yesterday (our trip to Stanford) and today...

Sheridan playing with his ball pits (yes, he has two - a bit spoiled, but whatever).


His favorite part is throwing the balls out of the "pit" all over the living room. awesome.

Hangin' with Nonna (I'm SO glad my mom came down with us - it's been such a help to have three of us taking turns!).


Sheridan loving LOVING the hotel room. Especially the bit mirror wall.


Just for those who care (likely nobody, but oh well), here's our hotel room (Ronald McDonald House didn't have any rooms available, but as soon as they do we'll move there). Our room is very, um, orange.


Climbing on me...


Here's Sheridan recovering from the blood draw... eating an organic blueberry Cliff Z Bar to tide him over for lunch.


My dad and step-mom (Grandpa and Nanny Airplane) came down this evening so they could have dinner with us and be at the hospital all day tomorrow. So grateful they came down and we got to spend some much-needed time with them.


And Sheridan had a blast cruising around all the furniture in the room. He's getting pretty brave crossing large gaps (here he's crossing from my mom to the coffee table).


He even took an independent step a couple times tonight. I'm so proud of him! And he's pretty proud of himself, too! Here he is clapping "Yaaaaayyyyy!" for himself :)


It's all still surreal. I'm not gonna lie. I think Gary is right, my stress is over the top. Right now, I just know that I love him, that he is loved by MANY, and that he loves us all right back. I also know he will be okay. This is not my last night with him (as Gary reminded me after I said good night to Sheridan).

Thanks to everyone who is sending me emails, posting comments, writing notes on facebook, calling, sending text messages... you have NO idea how much it means to me. I'm not afraid or ashamed to say that I need that support right now. So, thank you.

One last thing... internet connectivity has been rough to say the least (both in the hotel and the hospital). But my intention is to post updates throughout the surgery tomorrow if I am able. I know how helpful others' posts have been to me as we prepare for Sheridan's surgery, and I'm hoping that anything I can share can help other families prepare. But if internet is down it might take a couple days... I refuse to type more than 4 words at a time on an iPhone :)

22 May 2010

A Few Recent Pics Before We Go

Just wanted to share a handful of recent pictures my friend Michelle took of Sheridan (she also took these pictures of us together). She is very talented, and wanted an opportunity to practice her photography skills... LOVE these!

20 May 2010

Sheridan's Open-Heart Surgery

First, a ridiculously adorable picture of Sheridan to put a smile on everybody's face before they read on...


On Sunday we leave for Stanford, we have a 6-8 hour pre-op appointment on Monday, and surgery is scheduled for Tuesday.

Many of our friends and family have asked for more information about Sheridan's heart defects, how they will be fixed, etc. So, taking a cue from Pudge & Zip's mom (thank you for all your support, Courtney!), I turned to the Children's Heart Institute of Virginia for a few images to help me explain (I'm a bit of a visual learner and I thought these were great)...

FIRST, A HEALTHY HEART

Think of your heart as a house with:

4 rooms (chambers)
4 doors (valves)
4 BIG hallways (vessels)
4 little hallways (vessels)

It would look like this...


VENTRICULAR SEPTAL DEFECT

Sheridan's got two of these suckers... basically, they are holes in the wall between the two ventricles. Here's what his heart house looks like (notice the hole in the wall between the bottom two rooms):


To repair his VSDs, his surgeons will use Sheridan's own pericardial tissue to "patch" the hole. Eventually his heart tissue and the patch will become one and grow with him. Here's the best way to envision that patch job:


PATENT FORAMEN OVALE (PFO)

In the cardiothoracic surgery world, a PFO and an Atrial Septal Defect (ASD) are essentially synonymous. The terms get used interchangeably. The PFO/ASD is a hole in the wall between the two atriums (the top two chambers of the heart). Here's what it looks like using the house (notice the hole in the wall between the top two rooms):


Sheridan's surgeons expect to be able to close the PFO with sutures. No patch needed. But just for illustration purposes, here's what his heart will look like after the sutures close the hole in that wall:


PATENT DUCTUS ARTERIOSUS (PDA)

This one is a bit different. It has nothing to do with the walls in the heart. The PDA is actually something that we are ALL born with, believe it or not. It's a critical piece of fetal blood flow. The difference is, most PDAs close naturally within the first couple days of life.

Sheridan's didn't close, so now what he has is an open vessel that connects the oxygen-rich blood in the aorta to the blood in the pulumonary artery (that takes blue blood to the lungs to oxygenate it). So, his pulmonary artery is carrying some oxygenated blood to his lungs. A big no-no.

Here's a healthy heart (images thanks to the Cohen Children's Medical Center in New York):

Here's a heart with a PDA:


Sheridan's surgeons will suture this hole, also.

So there you have it...

LOOKING FORWARD 

I want to thank every single friend (including my blogging friends from around the world!) and family member that has reached out to us and shared their stories with us. Talking with parents who have had a child go through the same surgery has given us MANY tricks and tips to help us survive the waiting and healing, and most importantly has given us ideas about how to make Sheridan's healing and coping go as smoothly as possible.

I still have no idea how the surgical team will pry Sheridan from my arms on Tuesday morning, but I do feel that he is in good hands.

I will post frequent updates the day of the surgery and during his recovery at the hospital and at home. We know we have a road ahead of us, it might be short, or could be long. But I know Sheridan is super strong and healthy and will kick this surgery's butt!

Here's to rockin' the scar!