Open Heart Surgery

You and your daughter are in my prayers. I know how hard these things are - my daughter is 2 1/2 and has 2 open heart surgeries - one being a heart transplant this year. I don't know if your child is an infant or a toddler - my daughter was 2 when she had her surgeries, so we found for her that during recovery short sleeve nightgowns were the easiest. They will provide gowns there of course, but it is nice for them to have their own things too. Short sleeves work best because it is the easiest access for IVs and blood draws, which she is sure to have. Sometime they do a central line IV or other tubes through the groin area so the open access of a gown rather than regular jammies is good too I found. Of course if your daughter is an infant that might be different - I would stay away from anything footed because sometimes they do IVs or the pulex on the foot or toe. I know this all sounds scary if you havn't been through it, but these children are so amazing and resiliant. My daughter had her heart transplant in March and is doing so well - you would never even know!! As for the carseat - we went home in the same one as always, of course she had a month recovery in the hospital before we went home. And yes, it is very important not to pick up under arms - start practicing scooping her up under her butt and back so its not so awkward afterwards when you have to. My daughter had her surgeries at Texas Childrens in Houston, but she was in the PICU at Cooks for a week when she was first diagnosed. The nursing care at Cooks is excellent! She will be very well taken care of and they even have a pull out bed for parent to sleep in in the PICU! I was in 4 different PICU's with my daughter and this is the only one that had this! If you are not from the Fort Worth area be prepared that you can't call out long distance from the room - so have your cell phone to call out. The food at Cooks is the worst I've seen in any hospital!! Their wonderful nursing staff and doctors more than make up for it though. Good luck to you and your daughter - I know how hard it is to see your child go through an open heart surgery - hang in there and be strong! You are in my prayers. Please message me if you have any questions!
L.

My daughter had her urinary tract reconstructed when she was 19 months. We had a lot of the same questions. First, I'd call the dr. Sometimes they have printed instructions that deal with a lot of your questions. Most parents will have the same questions as you.

An amazing thing is how fast they heal. My daughter's surgery lasted 3 hours and was very extensive. 2 Days later she was playing like nothing happened. She slept a lot more, but young children heal much faster than adults.

You are in my prayers. Surgery is so hard on parents too. I hope you'll get answers to your questions. Good luck!

Hey, I know exactly how you feel. My daughter is 5 and she has Hypoplastic Left Heart Syndrome. She had her 1st surgery at 2 days old, 2nd surgery at 7 months, and her 3rd at 3 years old. We had our surgeries at Texas Children's Hospital in Houston. The best thing to dress them in is something that snaps in the front. We found that to be the best thing for if you have to tend to her incision or something. The gowns are the best thing for the 1st couple of days. As for the car seat, if there is a special one I didn't know about it. We didn't have a problem with the straps. They didn't seem to bother her at all. You are right about not picking her up under her arms. We were not able to pick her up under her arms for 6 weeks but my husband wanted to make sure she was fine and extended it for another week:) I know exactly what you are going through. If you have any questions or want to talk my e-mail is ____@____.com I would be happy to talk to you.

A.,

I have not been through this with my children, but I had surgery on my heart a couple of months before my 2nd birthday to close up a whole in my valve as well. I just wanted to let you know that I will keep you, your family and your beautiful little daughter Sarah in my prayers. I would ask the nurse at your surgeon's office the questions. I am sure they get these same questions a lot.

Also I just want you to know that even though this will be very difficult for you to have see your little one in some much pain and discomfort that it will pass and Sarah will not remember this at all. I have a few memories of the children's ward and going there to play games with other children, but that is all. This is definitely much harder for the parents.

M.

I would go to www.car-seat.org and post a message there asking about your daughter's situation and the car seat thing. There are lots of car seat technicians on that board that know lots more about special needs seats and might be able to point you in the right direction.

Hi A.,
I used to work for the American Heart Association and I'm currently involved in a project where they're creating a resource book for parents of children who have heart surgery and other treatments. The book is still being written, but it's modeled after the Heart & Soul guide offered by the Canadian Heart and Stroke Foundation (http://ww2.heartandstroke.ca/Page.asp?PageID=1975&Art.... Of course, the Canadian healthcare system operates differently from ours, so not all of their information is relevant.

You may want to contact the Mended Little Hearts office in Dallas (they're an extension of the Mended Hearts organization for adults with heart disease):
The contact is Rita Callens at ###-###-####, ____@____.com heart association office is closed for the holiday, but you should be able to get in touch with someone on Monday.

My now 4.5yr son has Vaters association. He had his first heart surgery at 3weeks old and his second at 4mo. old. I didn't have a special car seat for either surgery. We were out of the hospital from his ASD/VSD repair with in a week or 2 at most. He recovered VERY quickly! He had still been on his feeding tube but we opted for teh NG and I learned how to place those...so no surgery was involved. About a month after that I had retaught him how to nurse and continued to breastfeed him for a long time!. Good luck. She, and you, are in our prayers.

L.

My daughter just had open-heart surgery to close a VSD in August. Her hole was neither big nor little, but moderate in size. She was 8 months old at the time and her surgery was at Cook's as well. It was very scary for us in the days leading up to the surgery and there were many prayers being said for her. We also had a group from church meet with us the night before the surgery to pray over her. Having said all that, everything went perfect! She had surgery late Thursday afternoon, and she was on the floor playing in the PICU Saturday morning (I mean on her tummy and everything!). She was moved into a room Saturday afternoon, and we left on Monday. We had a wonderful experience there!

I had the same questions as you have going into this. When we left, I asked them for some padding to place between her and the carseat strap. They were more than accomadating! They gave us lots of these big, square, bandage things to help pad it. Although they said we didn't need to, we used these for about a week anytime we took her anywhere. Also, as for clothing, I bought lots of soft, one-piece outfits without any buttons down the front. I found them on clearance at Old Navy. This is what she wore all the time! Be ready, they had her in regular clothes the second or third day (while in the PICU). They provided 2 onsies for her while in there.

I was amazed at how quick she recovered! Besides not being able to be picked-up or pulled by her arms, you would have never known that she had just had surgery! She was on Tylenol for pain by Sunday evening! Within about 2 weeks, she was off ALL her meds. The last time she had taken Digoxin was the night before her surgery.

It's now been 3 months and she is doing fantastic! She is finally putting on wait, and looks so healthy! I would love to share more, but this is gettting way too long. If you would like to know more, please feel free to contact me!

My prayers are with you and your famliy.

A.

Hi. I will definitely be praying for your daughter on December 3. My son, Cooper, had open heart surgery when he was 4 1/2 months old. He was at Texas Children's Hospital in Houston, TX and they were fantastic! It is amazing how quickly kids recover from this. My son was interactive and happy within days of surgery. As for the car seat, TX Children's gave us a little pillow that we put between his chest and the straps. It was just a small home made pillow, but it worked great! He still plays with it too. As for clothing, I just kept him in his button up pj's because they were easy to get him into and out of. He had started rolling over right before surgery, so they gave us a hospital blanket that we rolled up and placed in his crib in a U shape. We then placed him inside the U when he slept. This helped to keep him from rolling over when he slept. He did roll over shortly after surgery and he quickly knew that was a bad idea. He didn't try again until about 2 weeks later. I would just say to listen to your child. If she is in pain don't hesitate to give her the meds. If she is fine then cut back on the pain meds, but my biggest advise is to stay on top of the pain. Don't let the pain get too bad before you give her medicine. Just think of how you would feel if you were in her shoes. Well, this is getting long. Feel free to contact me if you want to talk more.