Tuesday, December 11, 2012

Update 8

It's official - Reid has been released and we're heading home tomorrow!

He's doing so well. He's a little fussy and his sleeping and eating schedule is thrown off, but that's to be expected.

His eye is also really irritated from rubbing against it with his bandaged hand, but that should heal soon.

His scar already looks great, and overall he is just his happy self.

E has an upper respiratory infection, so we have to keep them apart -- once again.  She hasn't seen him in five days! She felt a little better tonight, so we took her on a much-needed date to get some ice cream.

We look forward to having the four of us together again, and to R's continued recovery at home.

Thanks again for following his progress and for all of the love and support!!

Monday, December 10, 2012

Update 7


We are so happy to report that R will be discharged tomorrow! He is a prized patient and has done every little thing that has been asked of him.

The cardiologist is extremely pleased with his progress and if nothing changes over the next 12-16 hours, we're outta here.

He will have to have several cardiologist visits over the next few weeks, but other than that, his heart is officially fixed. Once he is fully recovered, he will only need to visit the cardiologist once a year.  

You can tell he feels so much better already. His breathing is slow and regulated, and his color is great. It's a miracle to watch these little babies go through so much trauma and recuperate so quickly.

We can't wait to head home and get back to living a normal life. 

We're a little bruised and battered, but it's all worth it. We look forward resting, relaxing, and enjoying our HEALTHY family. It's going to be a wonderful Christmas -- R getting his heart fixed is the best gift we could ever receive.

We're so excited for everyone to get to know our little man. Your prayers and support got us through!

With his surgeon. (Yes. He's gorgeous AND he saves babies.)

Update 6

R had a very uneventful weekend.  Which is this world, is a very good thing.

He has been moved out of the CICU and onto the main cardiology floor.  He had his chest tube removed yesterday, and is now completely off of oxygen.

He is a little under the weather this morning. He has a low-grade fever, but it's not anything they're too concerned about. They think he might have an unrelated ear infection or something along those lines.  They'll check him out in about an hour to see what they find.

He also still has pacing wires connected to his heart, but hopefully he can have those removed soon.

Right now, he's out having a sedated echocardiogram for an in-depth look at how his heart is healing so far.

Overall, though, R is doing great. They're even discussing discharge in the next few days, which would be absolutely amazing. We'll see - hopefully his cardiologist has good things to say today.

We were so lucky to have several of our close friends come over the weekend. Elle is on her way back from a fun-filled weekend in Maine. We've missed her terribly and are so excited to see her soon.  And to hopefully reunite her with her little brother!

Saturday, December 8, 2012

Update 5

Quick update -- R is doing great today!

His breathing tube came out last night.  He quickly lost a lot of his equipment after that.  We were able to hold him this morning and he's even eating a little bit!

Hopefully, he'll be moved to the cardiology floor by tonight.  We are so, so happy with his progress!

Friday, December 7, 2012

Update 4

Not much new to report today.  R is still in the CICU -- intubated and on the ventilator.  He has been doing what they call, "riding the vent," which means that he is letting the machine do most of the work for him.

Apparently, this is pretty common during sedation.

He does tend to breathe for himself when he is touched or stimulated, which is a good sign. As for now, we're in a waiting game. He needs to start regularly breathing for himself before they can extubate him. Once he is extubated, however, things should happen more quickly.

The plan is to wean him of the sedatives so that he will hopefully start to breathe for himself as he awakens.

He did open his eyes about an hour ago -- I was rubbing his sweet head and talking to him and he got excited when he saw me.  It kind of backfired, though, because his excitement turned to agitation and frustration.  He started wiggling and trying to get out of all of his contraptions.  Then, he started to get really mad and tried to cry.  (This is the worst part -- no sound comes out because of the tube in his throat. And it is apparently extremely uncomfortable.)

All of the agitation caused his vitals to go out of whack, so we had to leave. It was so horrible to leave him like that.

Again, all of this is supposedly normal.  Hard for a mama, but normal to the docs.

We are now giving him the opportunity to come off of the sedation without us there to overexcite him.  Hopefully, he will do just soon and start breathing on his own.

Fingers crossed!!

Thursday, December 6, 2012

Update 3

It has been a very long day, but R is doing really well!  He is such a rockstar and all of his doctors are so pleased.

If he continues to do well overnight, they will remove his breathing tube in the morning.  If that is successful, they will gradually remove more equipment so that his body can start to do everything on its own.

Hopefully, he will be moved to the pediatric cardiology wing by Saturday morning.

As for right now, he is fully sedated and intubated. (But his little leg wiggles every time he hears his mama's voice!)

God is good and all of the prayers are working.  We love this little man and are THRILLED that he is doing so well. We look forward to seeing him wake up tomorrow and to a very speedy recovery!

PS -- Please know that we have read every single message and listened to every voicemail.  They mean more to us than you could possibly know and we are so very grateful.

Update 2

R is out of surgery and will be heading up to the CICU shortly.  We should be able to see him in about two hours.

We just met with the surgeon, who gave a good report.  The surgery was pretty straightforward with a few unexpected hiccups.  There was an additional Atrial Septal Defect that had to be patched as well as a rare Bilateral Superior Vena Cava (the latter is simply a technicality in R's physical makeup -- it just changed a few things about the actual procedure).

Both issues were successfully dealt with and he has been stitched up.

He did a great job and we will know more about his recovery over the next 24 hours.

We will update more once we see him and meet with the doctors.


We spent the morning with R in pre-op and he took his first sedative with us around 7:00.

They took him shortly thereafter and he was fully sedated by 7:45.

First incision was at 8:50.

He just recently went on bypass at 9:45.  Surgery is underway.

Prayers, prayer, prayers!!

Wednesday, December 5, 2012


We are back at the hotel and settled in after a long day. We managed to get a little sleep last night, although we were awoken every five minutes by either:

a) some type of siren (staying in the hospital district has it's pros and cons)
b) our heater turning on (which sounds similar to a stray cat dying)

Side note:  L is LOOOOOVING everything about this trip.  Particularly standing in the window of her hotel room with just her big girl undies on, looking out of the window at all of the Ambooolanses!! Fiwe Tucks!! Twaffic!! Peoples!! and Masssatooosich!!

"Who's dat?"

"What dey doing?" 

"Where dey going?"

"What dey doing now?"

"What dey dog's name?"

But I digress.

Our day was long and busy. 

Mr. R had an EKG, bloodwork (this was the only part that made me cry -- they couldn't find a vein and stuck my baby several times over), X-rays, a sedated echocardiogram and numerous physical exams.

We met with a nurse practitioner, our cardiologist, anesthesiologist (could have lived my whole life without hearing the details he gave me), and our surgeon.

We also had another tour of the CICU and the pediatric cardiology wing.

Reid was amazing -- he is the toughest little nugget. He is not scared to let somebody know when he's not happy.

And the sedation?  Please.  He wasn't going down without a fight.  Everytime we thought he was finally asleep, his eyes would pop open and he'd yell.  

Just once.  "Meeeeh!"

He finally succumbed when we piled warm blankets all around him and darkened the room.  But, I mean, come on....who wouldn't sleep in that set up?

We started at 5:00AM and didn't get a chance to eat until 3:00PM.  You better believe I immediately downed a burger, fries and a glass of wine.  (And by that, I mean: a burger, half a sandwich, 1.5 orders of fries, two glasses of wine, and a cupcake.)

We report bright and early for a 6:00 surgery.  All told, he should be in for about 6-7 hours. We will get to see him once he is settled in the CICU.

We are so, so, so grateful for all of the prayers and support.  God has been with us every step of the way.

We know that R is in the very best hands and that he will do an amazing job tomorrow!  He is such a strong little man, and we have been so impressed by his bravery and patience through all of this.

We love him more than anything on earth, and can't wait until his heart is as perfect as he is.

We arrived home to this gloriousness.  A&H -- You. Are. The. BEST.

YaYa and Nonnie helped give him his last bath before surgery.  He had to be cleaned with a special antimicrobial ointment.

His beautiful chest, before it gets an even more beautiful battle scar!

Ready for tomorrow!

Surrounded by love!

And last but not least....we have been blessed to find friends that have been down this long road before us -- they have helped guide us through all of the difficult diagnoses, the pregnancy, his birth, and everything else leading up to today.  

Sweet JT had his surgery here in Boston just over a year ago -- same cardiologist, same surgeon.  He wore this precious outfit before his surgery and passed it on for Mr. R to wear today.  

Here are their two pics, side by side.  Heart friends forever! 

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