Thursday, July 5, 2012

Seth's Surgery

His eyes look a little goopy because they put ointment in them.
Patients under anesthesia don't blink.
11:00pm I just arrived at PCH to stay the night with Seth. Natalie is at home getting her first good night's sleep since his birth a week ago. It also marks the first time either of us has been at home when the boys woke up since that time. I have been coming up in time to rescue Natalie from the 7am shift change, so they wake up to Grandma every day. Not much has changed since I saw Seth last. The nurse says that they don't want to take his breathing tube out tonight. Not because he's not doing well enough, but because there are not so many doctors, and if there is an emergency, it requires getting a doctor here to put it back in. I also found out he can't eat until 6-8 hours after the tube comes out, and that will be the most unhappy time for him. It has been an exhausting day, filled with emotional breakdowns that strike when you least expect them. Seeing his car seat that he was supposed to come home in a few days ago hit me hard. I can't imagine what losing a child at birth must be like . . . taking down the preparations that you've made. Again I think of all the people I know who've spent much longer periods of time in much more difficult situations, and it tears at my heart. This has been a minor bump in the road for Seth, and yet it's nearly put me in the asylum. It makes me see a lot more heroes out there than I used to! Above is a picture of Seth's condition tonight-- not much different except for the blanket.

8:30 We called Seth's new nurse because, Hey, she doesn't know we obnoxiously called 90 minutes ago, and she might have some new news. Seth is entirely out of the anesthesia. He has been given morphine for the pain and is a bit logy from it, but he opens his eyes and seems very upset he can't eat. It may be even tomorrow evening before he can have any food, even through a tube in his nose. That seems like a really long time to me. If he is not doing well enough then, he will have to receive intravenous nutrition.

6:50 We called Seth's nurse before the shift change at 7pm. He said Seth is doing smashingly well. He opens his eyes enough to give the nurse "the stink eye" when he changes his diaper. He also said that he believes the doctors will decide to take Seth off the ventilator tonight. That's the first step in Seth's recovery. (Followed by removing the catheter, beginning a feeding tube, and taking out the feeding tube to begin breastfeeding again. This could take a few days, but hopefully won't go up to a full week.)

4:50 We just got home. We were told this is the best time to be gone since the patient is entirely unresponsive and unaware. It will be a chance for Natalie to sleep in her own bed for the first time since Seth's birth. I may go back up tonight. That is undecided.

3:30 Dr. Gruber just came and talked to us. He said the coarc was "very serious." Where as a normal aorta is around 5mm in diameter, Seth's was "pencil lead" thin. He was glad to have it done now. He asked the nurse for the blood pressure in Seth's legs and one is 63/80. I asked, "Doesn't that mean the blood is flowing backward?" He responded, "To the untrained eye it may appear so. What it really means is the numbers are inaccurate. Blood can't flow backward." Seems like we may have a bit of a smart-aleck on our hands. As of now, everything is normal. Blood pressure in the lower extremities won't be stable for a few hours yet. Seth is already sucking on his breathing tube which means he is beginning to come out of the anesthesia. As each of his body functions returns, they can gradually unhook him from all of the machines. We can't wait to have our baby back and take him home!

2:25 They paged Dr. Gruber. He apologized about 30 times and said he'd been called to an emergency. He told us he would be up as soon as he could and encouraged us to go get lunch, which sounded like a plan. To be honest, I was better off in the OR waiting room. It is very hard to be here when he is so very still. Machines are doing pretty much everything for him. I keep seeing the beautiful, vibrant baby that was wheeled away from us just 3 hours ago. Natalie is a trooper today. I'm an absolute fruitcake. It didn't help that I had the side adventure that's been added below. I didn't feel that everyone at home on pins and needles needed to know at the time, but I want it for our family record.

These pictures make me feel like my heart has been torn out.
They don't seem to bother Natalie a bit.

2:10 I finally told Natalie that she had to ask before I lost my mind. The nurse said that Seth was back in his room, and she wasn't sure what happened to the doctor. He is head of cardiac surgery so he may have had an emergency. (Maybe he's at lunch, I don't know!)
They told us to head up to Seth's room and check it out. Sure enough Seth is here. I'll post a picture when I can. The NP told us everything went perfectly. Seth's aorta was only clamped for 11 minutes. There was nothing unexpected or worrisome. Now we're waiting for him to wake up, which probably won't happen until this evening. Then, he'll be mainly on morphine. It seems like he's had enough phine already to me. (That joke is way funnier when not typed out.)

1:45 We were told the surgeon would be out in about a half hour. It's been 65 minutes. When is it time to get worried???

Side Adventure: 12:55 They just announced that the rain outside is flooding the bottom of the parking garage and all cars on the bottom level must be moved. After frantically running like a mouse through a maze trying to get through classified access doors, and asking help of 3 different staff members, I got down the stairs to the front desk. As I headed for the front door, it hit me that the "bottom level" might not be Level 1 where I was parked. I asked at the security desk, and sure enough the bottom level is the Basement. I didn't have to move my car after all, but I did have to find my way back to the OR waiting room. This 10 minute side adventure was a blessing to be doing something, and a curse because we were expecting the doctor anytime.

12:40 Update #2: They have begun to close Seth's incision. Things went perfectly during the surgery. Dr. Gruber will be out in about a half hour to talk to us and answer any questions about the surgery. I'm going to see if I can get a 100 year guarantee. I may need a surgery of my own after this. It hasn't been very easy on my heart, either.

12:00 We just received our first update via phone. Natalie took the call. They have just made the incision, so I guess the last hour was prep time. They said Seth was doing really well (for what that's worth!) It wasn't much news, but when you are sitting here waiting, it seems like something. We've played igames, read, worked on crossword puzzles, and chatted. Nothing seems to make updates come any faster and no activity seems interesting for more than about 10 minutes.

10:50 (These things have really been happening on the 10 minutes!) Wheeled Seth into OR. They let us kiss him goodbye. It was pretty difficult to turn and go left while he went right. We know parents have to do this many times before their child walks out of the house for the last time, but it still seemed really hard! Now we play the waiting game. They promised to update us every 30-45 minutes. They even gave us a pager in case we leave the building. Probably unnecessary. There isn't a whole lot of chance of us heading over to the zoo.

10:40 Seth is ready to roll. Literally. They are loading him up in his transfer cart and moving him to the OR. He's been very brave. By that, I mean that he hasn't been able to eat since early this morning, but has been more annoyed than down-right angry. I've been able to hold him a lot because when Mom does, he gets really ticked off that he's not nursing.

10:30 Anesthetist came in an answered questions. "Bigger risk putting him in the carseat to take him home than from fatality due to anesthesia." We signed final consent form.

10:20 Surgeon came in and answered final questions. Seth's sutures will be in his aorta forever.

10:00 am The nurse gave Seth his final bath. Natalie went to pump-- she'll need to do that for the next few days until Seth can eat.


  1. Your humor even now. I knew it was you writing even without the 3rd person Natalie or the "R". Praying....we love you all!

  2. So glad to hear that update!! Can't wait for you guys to see baby Seth in a little while!

  3. GO AND ASK WHAT IS GOING ON. They will be able to tell you at the desk or phone or whatever it is.

  4. He is a tough little guy!!

  5. Thanks for keeping us updated. Glad it all went well. He is a little trooper!

  6. Oh you guys are so awesome and brave, I don't think I could do any of this much less post anything worth reading. Big tight hug for Nat, and Randy you never dissapoint! Just know that you are in our prayers and will continue to be there. Baby Seth is so, so big and cute, I feel like squeezing him from my screen! I did not know you guys could get visitors up there ( I wanna go!) We'll try calling and seeing if we can stop by some time. We love you guys!
    Grant and Maggie
    ( for some reason I can't get us to show up correctly when I post, I really do hate computers)

  7. Sending you our love and prayers- The rain is a sign that prayers really are answered- Keep holding on and let us know if we can help!!
    Mandy Haws

  8. Wow! What a whirlwind for you guys! Hang in there. For what it's sister had the exact same surgery for the exact problem when she was in kindergarten. She is now 25 and pregnant with her first. Aside from minor arthritis in the scar, she has been great! You described the waiting room scenerio perfectly! Seeing someone with all those tubes is terrifying...let a lone such a little guy! We are thinking of you and praying for you! Let us know if you need anything...even if its just to talk and swap stories!

  9. So glad things are looking good! I can't hard keep up with your updates...I'm an old woman you know.

  10. Just got the news from the mail at school. So sorry you are going through this big scare! Being a parent is one big worry always but when you go through something like this you feel so helpless. My prayers are with you. Your family is darling.

  11. I just heard the news and then found the blog through facebook...I am so sad! He is adorable...and Natalie you look great! I will be thinking of you guys....Love ya tons!I will call ya and see what I can do to help! Jessica Lindley

  12. He looks perfect. Get some sleep.

  13. I'm so glad that everything went well. You are awesome for doing all of these posts and updates!

  14. Thrilled things are going well. Your family is in our thoughts and prayers.

  15. What a relief that the surgery is done and went well. You have lots of love and support from our family. Thanks for the updates! Randy - are you sure you picked the right career? Maybe comic writer is more down your alley.....


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