Monday, March 05, 2007

We finally get to meet our baby boy for the second time

First off... sorry for the lack of an update. We left everyone hanging in the climax.

But, if you read further you'll understand why. This has been an emotional week, again.

Our ("our" meaning our friends, family, and benevolent strangers)...
Our prayers continue to be answered, Orion is on recovering, and recovering well.

Thank you to our family and friends and each other for helping us stay strong.

One week ago:

Monday "
right after surgery":

One week ago we were in the Surgery Waiting Room waiting for the news that Orion's surgeries were successful and everything went as planned. Sure enough. Dr. Reedy, Orion's Heart Surgeon, came out to the living room, greeted us graciously, and said, "The surgery went very well, we were able to patch the Pulmonary Valve area open, and put in the BT Shunt. We were able to do it without letting the heart stop beating. We did have to leave his chest open to allow some fluid retention to go down and put less strain on the heart." We followed him into CVICU (Cardiovascular Intensive Care Unit) and saw our baby... He looked like a bomb went off in his chest. Dr. Reddy took us to see him before he got totally cleaned up and before the nurses were even done setting him up in his bed. Blood was all over his body, and where there wasn't blood, there was some sort of tube or wire coming from him... and he was moving a lot. CIVICU wasn't ready for us to see him. We were quickly sent away while they finished cleaning him up.

The second time we went in to see him, about 30 mins later, he was all cleaned up... sort of. Now our friends, Justin and Lisa Manning (who we met at NICU, their son had gone through heart surgery just week and a half earlier) warned us how scary it looked when Mason(their son) came out of surgery, but even prepared, it was overwhelming.

Orion lay there and was being switched form O.R. Anastasia to different sedatives and pain killers. He was moving. More than we have ever seen him move. He had two tubes coming out of him from the lower cheat (about 1/4" diameter) draining fluid from around his lungs and chest. He had IV lines in each foot, one arm, and two special ones that went straight to his heart. He had two wires also coming from his heart called pacer wires. He still had the breathing tube down his mouth, throat, and into his lungs. It was connected to the ventilator, that took breaths for him in case he got too sedated and forgot to breathe. On top of all that he was so swollen that he looked like the Michelin Man. His eyes were puffy and everything looked round.

The hardest thing to take in was the 2 inch gaping, 6 inch long opening in the middle of his chest. It was covered with a thin "second skin" that was transparent. We could kind of see the heart through the clear sheet, but mostly, its just the chest tubes and blood that's visible. see our pictures in the Orion's gallery...

It was almost unreal. It took a couple hours and into the next day to settle in. He came in and out sleep, and occasionally we saw his eyes peek out into the world. Before this... the last time we saw his eyes was the few seconds we got to hold him after birth.

Wednesday "
chest closure":

The next two days we watched him shrink. His diuretics went to work as he filled a container the size of himself in 48 hours. His levels continued to be consistent and on Wednesday afternoon, they decided to close his chest up. He was very stable and they closed up his chest on Wednesday, it was kinda scary waiting... They said it was going to take and hour and had us step out. Two hours later they were still not done, so the receptionist told us she would call us from the parents lounge when they were done. We waited 3 then 4 hours... I got really worried, thats when Tawny went in to check (she just woke up from her nap). Apparently the receptionist went home 10 mins after she talked to us and Orion was done with the closure for quite a while. What a scare! My first taste of what my parents went through when I never called home and I was out late...

Thursday-Friday "sleep and that annoying breathing tube":

Poor kid. Orion slept for most of Thursday. They started feeding him 3ml/hr of breast-milk for the first time. His first meal! That night they said he was scheduled to take out the breathing tube at 12pm friday. To prepare, they cut off feeding him, and had to take him off the sedatives to make sure he was breathing on his own. Once the sedatives started wearing off, he was gaging on it every 15 mins. It was heart-wrenching to watch. Then when 12 rolled around, the Doctors said, "they found some fluid around his lungs (hiding in his "back rolls" I'm sure of it), so they will hold off another day while they try and get rid of it. Back on the sedatives... zzzzzzzzz

Saturday-Sunday "His Face! & Grandparents Weekend":

Sat morning, they said that all the doctors are booked so he will probably have to wait another day to get his breathing tube removed. It restricted his movement and kept his upper lip permanently in an elvis position. We really wanted to get it out. He was ready, no more fluid, breathing on his own, but no doctors?! Then 12pm came around and someone comes by the bedside, "He's getting his tube out in 20 mins." Tawny didn't want to watch, but I did. A Doctor stood there while nurses took the tape holding it off, made him cough, and pulled it out while he was coughing. I guess the doctor is there in case he stops breathing. But when they pulled the tube out, Orion cried for a second, stuck his tongue out, moved his lips around, and then cracked a little smile! "That's my son!" is what I thought. They also took a chest tube out and one of the IV lines going into his heart.

We finally got to see his face unbostructed for the first time since birth.

Afterwards, He had the smallest cry (because of the breathing tube), most of the time you can't even hear it from all the beeping, but the nurse said that most babies don't even make a sound for two or three days, so he's doing pretty good.

The weekend was when both Grandparent sets were visiting. We got to hear how to take care of baby advice all weekend... how fun. Good news was... comfort food galore.


Today Orion is doing good. He has a build up of Lactic Acid in his blood, so he is getting medication for it. We ran into this problem when he was born, and they fixed it with a blood transfusion. I think they might do the same. Hopefully tonight he gets better so tomorrow, he will get his last chest tube out and last IV line going to his heart.