Saturday, October 9, 2010

31 for 21: Open Heart Surgery Advice


Four months ago today I'd just handed my baby girl off to a surgeon, and was anxiously awaiting updates on her OHS.  Today, Claire is healthy and thriving, and that scar on her chest is the only reminder of her surgery.
I have a friend whose little girl will be having OHS soon.  She doesn't share Claire's extra chromosome, but she does have the defect (AVSD) that so many of us are familiar with.  To help prepare Lu's family for her surgery I wanted to put together a list of things that were helpful for us, or things I wish I'd known a head of time.
  • See if there is some place other than the main surgery waiting room for you to wait during the surgery.  We were able to wait in one of the outpatient hospital rooms and it worked very well.  It was quieter than the main waiting room, and also allowed me a place to pump.  This was important because I didn't want to have to leave to pump and miss an update.
  • Bring snacks and water with you for surgery day.  I didn't want to risk missing an update, and having food with me meant I didn't have to make a trip to the cafeteria.
  • Have something mindless to do during the surgery.  I had a magazine to flip through and my computer to keep me occupied, and it helped keep me from worrying as much.
  • Get a room at the Ronald McDonald House.  When Claire was in the PICU, I was allowed to stay in the room with her overnight, but there was no shower, only a shared bathroom.  Getting out of the hospital for a bit and getting freshened up really helped my state of mind.  Once she was moved to the floor there was a full bathroom in her room.
  • I had a radio beside Claire while she was in the hospital.  It helped calm me, and also offered some relief from all the hospital noises.
  • Let the nurses take care of the procedures that may be scary or painful.  You should be a source of comfort for your baby, and not associated with her tears.
  • Baby Legs are a great way to keep your little one warm while she is still covered in tubes and wires.  And, they're awfully cute!
  • ETA:  I knew I'd forgotten something!  Thanks Becca for the reminder.  Looking at pictures of other kids after surgery was very helpful.  While it was still awfully hard to see MY baby with wires and tubes everywhere, at least I had an idea what to expect.  Here are Claire's surgery pictures.
If you have additional advice or suggestions, please leave comments!



  1. buy your baby a bathrobe for all of the tests and procedures the day before. it saves having to dress and undress over and over again.

    we got cell phone updates every hour, so i found it helpful to just walk all around the hospital and distract myself by watching other people

    don't be afraid to ask them to place the IV someplace other than the head. the first time, they did it in her head and it took a long time for it to heal. the second time, i told them if at all possible, could they try someplace else first and they were able to get it in her foot.

  2. Loved having my computer. I updated Lily's Caring Bridge site throughout the surgery. It gave me something to do AND it kept others up-to-date without having to call us.

    If your child is feeding from a bottle, take some of your own along. I was so thankful someone told me to do this or we would have been in trouble.

    Your child should not have to be in pain. ADVOCATE for him/her. I am by nature, a shy person. Not when it came to my peanut.

    Get rest!!! Let the nurses do their job. You will not be getting much sleep for a while once your lil' one is home. And speaking of that...Lily's sleep schedule was completely out of whack for about 3 weeks after coming home from the hospital. Be prepared...feels like you have a newborn again.

    If I think of more, I'll post. Please keep us up-to-date. I will pray!!

  3. This is a great post!

    We did stay in the PICU with Lucy. I brought pillows and blankets from home. It was nice to have something familiar. Mark and I each brought out laptops, which was WONDERFUL! We were able to amuse ourselves, AND keep everyone updated.

    We brought a deck of cards. We played a thousand hands of rummy, but that is one of the happier memories of our stay at the hospital.

    We also brought snacks and goodies. It was a big money saver not to have to buy munchies from the hospital gift shop. Nothing healthy, all junky comfort foods!

    I never changed out of sweats. If you're going to be there for a while, be COMFY!

    And that, is my guide, to a successful surgery stay! :)

  4. I have no experience to offer but I want to say what a great post this is! Matthew is lucky to not need OHS so there is nothing on my blog about it. But I will be sure to direct people to this post on the issue.

  5. Our Lillian Grace had her OHS 1 year ago. I agree totally comfortable. I wore yoga pants and a tee and brought the jacket. You have no control over the temp. in the room. Also ask for a private space if you'd rather not wait in the main area. We elected to recieve text msg. on my phone as to when she was in surgery, on bypass, repair,closing and it was really nice. They even sent a text to meet the surgeon in conf. room #2 in 10 min with directions to the room.I took my laptop as our home is in WI and she had surgery at CHop so many were wanting updates and with just the 2 of us there it gave me something to do.
    Post op let the nursing staff do their job but don't be afraid to speak up if you think your child is in pain. Lillian was totally peaceful the first 24hrs. post op and then became restless and REALLY fussy. I was on it and when the nurse couldn't get Lilly's pain under control(after 3 hours of attempting and then telling me she's going to have some pain, it's ok for her to have some pain) I spoke to the nursing super and a new nurse replaced her and within 20 minutes Lilly was again pain free and resting. Be prepared for the 10-12 hours out post op mark when their hearts can become irritable and and have life-threatening arrythmias. our doc was very straight forward with us. He told us what to expect, and was there in view of her room from about hour 9 to 13 or so. Lilly didn't have any cardiac arrythmias as they expected her too,Praise God, but I am glad he prepared us because I would rather have knowledge going in the front side vs being in the storm and wondering why after 10-12 hours of peaceful post-op is she crashing. Get aquainted with the clergy at the hospital. As Lilly was an inpatient for 8 months before surgery I was glad I knew those on the clergy service and they stopped by to check on us and see if we needed anything.

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  7. Look at post-surgical photos from other children's surgeries ahead of time, so you're prepared to see your baby all hooked up and puffy. I was very grateful for some of the photos posted on the Downs Heart Yahoo group page, and was not too shocked when I saw Samantha afterwards.

  8. This was some advice given to me from anothe "heart mom". While your baby is in the icu get some rest yourself because when they move them into a recovery room it is all you. And you will mneed to rely on that extra sleep you ge.


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