July 26, 2013

Ruthe's first surgery...

Where do I even start with today??


John and I woke up at about 6 to get ready and be at the hospital by 8 to meet with Ruthe's surgeon. I packed an over-night bag because there's a bed for me to stay with her in the PICU after surgery. John filled the car up with gas.

When we got to the hospital, Dr. Ciccolo was right behind us ready to explain today's procedure, and go through a little bit of what will most likely happen in the future.

Today, they'll open her chest, place bands on her pulmonary arteries to protect her lungs from getting too much blood, and place a stent in her ductus arteriosis to keep it open and blood flowing through to her body. Ruthe decided to make things even more difficult by turning her pulmonary arteries sideways, so they cross. Isn't she just a peach?!! Her doctors are not concerned about that making things difficult. There are risks to these procedures, just like with every surgery. Mainly, the risk of infection. Also that things could go wrong during surgery, causing her to lose too much blood, or that the stent could block blood flow to either her lungs or her body... They gave us a 5% mortality rate for this procedure. And while Ruthe seems to have chosen the road less travelled with everything else, that's not a percentage I'm overly concerned about.

John had to leave to go to the dentist. Ruthe's surgery wasn't scheduled until noon, so I just hung out at her bedside like it was a normal day. At about 11 my mom brought me some lunch, so we went into the family lounge to eat before everything got going. At 11:40 we headed back into the NICU, and Ruthe's nurse was a little bit frantic! The doctors had just called to tell her they were on their way to come get Ruthe and take her down for surgery. That poor nurse was so worried that we wouldn't be back in time! Luckily John was just parking, too, so he ran straight in to be with our sweet nugget before she had to go.

Ruthe surprised us all by waking up and staying pretty alert the whole time we waited for the doctors. It took them about forty-five minutes to finally come up to get her, so we had a nice long time to tell her how great she is and that we love her so much and that everything's would be fine.



I could NOT handle the idea of them wheeling her off into the unknown. I tried so hard to hold back the tears, but just couldn't do it. My tiny, sweet, snuggly nugget of a baby girl was about to have open-heart surgery. I finally got it together enough to give her a kiss in the pre-op room and tell her how much I love her and that I'd see her soon. And then I promptly went into a bathroom stall to finish sobbing. Don't tell John, he'll be mad that he wasn't there to remind me everything would be OK.

The waiting room was not as bad as I imagined it would be. Our wonderful friends, the Deans, brought some snacks and drinks and hung out for a while for moral support. [We love you Teri, Jen & Deanna!!]

And then we waited. And waited. And waited some more.

There's a TV screen in the waiting room with patient's code and their general location in surgery. We watched for Ruthe to show up, and at about 2:15pm she did! Her code [8950] showed that she went into the operating room at 1:04pm. About the same time we saw her on the screen, one of the nurses came out to give us a progress report. All the pre-surgery things had gone well and the surgeons had just started their procedures. Everything was going exactly as planned.


I kind of expected to get more updates from the nurse, but that was the only one.

About another hour passed by, and then there were two nurses asking for Baby Girl Orr's family. Then they asked John and I to wait in a small conference room to the side of the general waiting area. We did NOT like that. It was the worst sixty seconds of my life, sitting in that room, all alone with John, waiting for the doctor, and expecting it to be horrible news. John and I both said to each other, "I don't like this."

Dr. Ciccolo came in and relieved all our fears by saying it went great. I could have strangled him for making us go into that little room!!! But he was able to tell us more about how Ruthe did during the procedure since there wasn't anyone else that could overhear. Gotta love those HIPPA laws!

I knew my family was waiting outside with the worst scenario running through their heads, so as soon as we walked out I flashed them all a thumbs-up. I had to fight really hard again to keep the tears back, but this time I did it. We just had to wait another fifteen minutes and they'd wheel Ruthe out for us to see her. I think we ALL really needed to see her face to really believe that she was OK. That darn little room traumatized all of us!

My mom, John, and I waited for them to bring her out, and then went up to the PICU family lounge to wait until she was all settled into her new room before we could really check her out. Each patient in the PICU has their own room. It's really nice, because there's a pull-out chair-bed for a parent to spend the night. [Thats where I am right now!! and I don't plan on ever leaving, but I know my mom and John will drag me home to shower at least once a day.]

Ruthe was all bundled up in about ten different blankets as they wheeled her past us. All we could see was her nose and some of those chubby chubby cheeks. It was all we needed!


It took probably another hour before we went into her room to see her for real. She's not the prettiest baby right now, but she's definitely still my favorite!

The doctors and nurses all warned us, several times, that she would have all kinds of lines going into her, and there would be a lot of machines around her. They were right. But it's not quite as bad as I thought it would be. She has a chest tube in, to allow for drainage. And another line going into her heart that they can use to give her medications or whatever else you would need to inject directly into an infant's heart... They also added an arterial line into her femoral artery. There are eight different medications set up to run, but only four or five actually going. Some of them are just-in-case meds, and they took her off one since I've been sitting in here.

The goal is to have her off the ventilator tomorrow or the next day. They should start to wean her off some of the different things over the next few days, too. And the surgeon will come in to check her chest tube tomorrow, 24 hours after surgery, and possibly take it out.

Overall, the lessons we learned today are:
[-] I am not well-suited for pre-surgery nerves, or post-surgery relief.
[-] Rolo cookies are delicious!
[-] Conference rooms, while seemingly evil, are not all that bad.
[-] Choosing to sleep in your baby's room the first night after open-heart surgery sounds like a good idea, until the nurse tells you that they'll keep the lights on all night, and you remember how your daughter likes to set off the alarms on all her machines just for fun.

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