Anyone here with experience with open heart surgery at Children's?

[Anonymous]

We recently found out that our baby has an atrial septal defect that will need to be repaired with open heart surgery. I'm just wondering if there are any other parents out there who have been through something similar and would be willing to share your experiences.

[Anonymous]

Yes, will be happy to write more when I am not on my phone. Just know that it will be fine.

[Anonymous]

We knew a family years ago who's child needed heart surgery as an infant. They were so pleased with Children's that they got involved with fundraising.

[Anonymous]

No experience, I just wanted to know that I'm glad you've found this forum. You'll find it welcoming, supportive and help you feel that you're alone. I know how much all of that has meant to me when I've been anxious and looking for assistance. Best of luck and lots of hugs.

[Anonymous]

OP here - If anyone wants to email me rather than post here I would love to hear from you. My email is minnymouse216 at gmail dot com

I would appreciate hearing what to expect about our time at Children's. And I'm also trying to get a sense of what to expect from the post-surgery recovery period. The doctors have told us 5-10 days in the hospital and a few weeks at home. My son will be close to a year old by the time we have the surgery.

And for any parents who have had kids who've had surgery - what do you wish you had known beforehand? What things would you bring to the hospital? Those are the kinds of questions I have now. Thanks!

[Anonymous]

It's one of the most highly regarded centers for pediatric heart surgery and cardiology in the world. Also, they opened a new cardiac ICU in the past year or so that is quite a bit more family-friendly. Biggest issues there are that parking is awful and the cafeteria sucks.

[Anonymous]

I'll try to write more later to your e-mail address, but wanted to reassure you that your son will be in the best possible hands. Our DD had a repair surgery with Dr. Jonas when she was 1 week old; we were home 6 days later and had excellent care in the CICU and amazing follow-up care after we were home and had to bring her back for check-ups. We now only get checked 1x/year (Dr. Doroshow is our regular cardiologist) and all is well, 4 years later.

The CICU nurses are top-notch and you generally get one nurse/each 12-hour shift so you do get to know them. You will also have access to a social worker; we had Heather Langlois and she's amazing. She would check in on us each day, see if we needed anything (like checking to make sure we had family help or someone helping with meals at home, time off from work to be there, or help coordinating insurance with employers, etc.), and was just a great person to talk to as we passed the time.

My best advice would be to line up someone to be with you during the actual surgery. It's hard to pass those hours alone. My parents were there as was one of the clergy from our church and we sat, told stories, prayed, sat quietly and were just together, which helped pass the time and also be quietly supportive as my husband and I awaited news of the surgery. You get a pager and they text you several times during the surgery to let you know how things are going in a general way. We found it very comforting.

You should ask as many questions before and after as will make you feel comfortable. You'll have a specific consult with the operating surgeon a day or two before which is a good time to ask a lot of questions. The docs were uniformly great (including Dr. Jonas) in drawing diagrams of what was going on, explaining what would unfold during the surgery, etc. The nurses gave us a very accurate picture of what the post-surgery wounds would look like, how we would be able to hold and care for our child while she still had various lines & oxygen, etc., and how the recovery period would progress. As I said, we were home 6 days later, so recovery was rapid, as our little ones do heal much more quickly than we would.

My DH and I took turns at the hospital which gave pretty full coverage for our DD, but meant we didn't spend as much time together as probably would have been good for us, in terms of mutual support.

OK, that was more than I had intended to write here, but it's an experience that makes a huge impression on your life, so there's lots to share. I'll try to write more to you later this week.

[Anonymous]

Anonymous wrote:I'll try to write more later to your e-mail address, but wanted to reassure you that your son will be in the best possible hands. Our DD had a repair surgery with Dr. Jonas when she was 1 week old; we were home 6 days later and had excellent care in the CICU and amazing follow-up care after we were home and had to bring her back for check-ups. We now only get checked 1x/year (Dr. Doroshow is our regular cardiologist) and all is well, 4 years later.

The CICU nurses are top-notch and you generally get one nurse/each 12-hour shift so you do get to know them. You will also have access to a social worker; we had Heather Langlois and she's amazing. She would check in on us each day, see if we needed anything (like checking to make sure we had family help or someone helping with meals at home, time off from work to be there, or help coordinating insurance with employers, etc.), and was just a great person to talk to as we passed the time.

My best advice would be to line up someone to be with you during the actual surgery. It's hard to pass those hours alone. My parents were there as was one of the clergy from our church and we sat, told stories, prayed, sat quietly and were just together, which helped pass the time and also be quietly supportive as my husband and I awaited news of the surgery. You get a pager and they text you several times during the surgery to let you know how things are going in a general way. We found it very comforting.

You should ask as many questions before and after as will make you feel comfortable. You'll have a specific consult with the operating surgeon a day or two before which is a good time to ask a lot of questions. The docs were uniformly great (including Dr. Jonas) in drawing diagrams of what was going on, explaining what would unfold during the surgery, etc. The nurses gave us a very accurate picture of what the post-surgery wounds would look like, how we would be able to hold and care for our child while she still had various lines & oxygen, etc., and how the recovery period would progress. As I said, we were home 6 days later, so recovery was rapid, as our little ones do heal much more quickly than we would.

My DH and I took turns at the hospital which gave pretty full coverage for our DD, but meant we didn't spend as much time together as probably would have been good for us, in terms of mutual support.

OK, that was more than I had intended to write here, but it's an experience that makes a huge impression on your life, so there's lots to share. I'll try to write more to you later this week.

Thank you so much for all this. It is really helpful. I would love for you to email me if you have the time. Thanks again for all the encouragement! I am so glad your DD is doing so well.

[Anonymous]

Our son had two surgeries at Children's when he was one month old. He didn't have heart surgery so I can't comment on that specifically. But I can attest to the fact that everyone on staff (from doctors to nurses to admin staff to janitors to parking lot attendants) are all very kind, attentive and happy to take that extra step to help. Take the tour of the surgical area they offer every Sunday. They did a good job of making the surgery area as cheery as can be for the kids. Yeah, the parking and food aren't so great. But if that's all you have to worry about, then you're in great shape. I have found working with their billing folks to be a bear. But again, pummeling through that is worth it for the best care.

[Anonymous]

I'm the PP. I also wanted to mention that we got really worried about the feeding situation before surgery (no food after midnight). Breastmilk is considered water for this purpose, whereas formula is considered food since it's thicker. So you can give breast milk closer to surgery than formula. Just a side note. I struggled with breast feeding but pummeled through awhile longer to get us through the surgeries. There are a few small private waiting rooms off to the side for breast feeding, praying, etc. Try to get your baby to sleep as long as possible leading up to surgery. Use one of those rooms for a quiet area to let the baby sleep more. We had a checkup under anesthesia a few weeks ago so had to use the surgical area. They gave our son a Dr. Bear stuffed animal. They really do try to make it as comfortable as possible given the circumstances.

[Anonymous]

My son needs his ASD repaired and we will be at children's as well. His cardiologist is Dr. Krishnan and we don't know yet if he'll need catheterization or open heart surgery. How big were the holes for your kids and how did you decide which type of surgery to have, if you had a choice at all. What questions are important to ask at this stage?

[Anonymous]

Just wanted to mention an organization called Heart Hugs supporting children with heart issues. They may be another resource for you.