My daughter was diagnosed with an ASD and VSD at birth along with some pulminary stenosis. She has had a very hard time gaining weight, but has finally reached that magic 10 lbs needed for surger. She is scheduled to have her open heart surgery on May 12 and I am scared to death. I would really like to hear from someone else that has been through this. I don't know how to handle this stress very well and keep thinking what if....
probably not a good idea to think of what if. take it day by day. i know a little girl (well she is now an adult) who was born with half a heart and was not suppose to live. she was a gymnast!
Personally I have not had to deal with anything so remotely scary. I do want to offer my prayers for you and your baby.
A friend of my daughters had heart trouble when he was very little and he is now in HS, plays the clarinet and the saxophone, is on the soccer team and is in all the drama productions.
God Bless you, stay strong M..
I know it must be scary as just taking them to have stitches is painful because this is your baby, part of you, and you want to protect them. But I can just add that God created her and he can take care of her. Sounds uncaring to just state it but it's true. If you can trust God with her care you can leave that burden with him. I pray she does well, and you do well, and that she gains quickly and is fine but she's in God's hands.
You poor baby, don't stress out. That's a hard thing to see your child having to have surgery. Your daughter will need you even more. Kids can sense your stress and I know you don't want to do that. Understandable you are worried, talking about it with family members helps. You will be surprised family is such a good support system. Be positive that this is a good thing for her. It's not a easy process and it's hard to see a love one having to go through surgery. Be Brave, be courageous and to help de-stress- remind yourself "All is well".............Best Wishes and many prayers sent your way!
You might try Carepages.com if you haven't already. They have resources and articles on many different health issues, and I know of several kiddo heart patients who are on there. It's mostly to keep your family and friends informed, so you might consider starting a page for her. I know it's not a connection to other moms who've been through it, but they may have links to a place that would help.
Best of luck to you and your daughter.
No answers - just wanted to wish you luck and prayers for you and your sweet little angel.
God bless you both.
our daughter was born with tetralogy of fallot, including pulmonary stenosis & the ASD/VSD-& a few other things. It's sooo scary & life-altering to hear these words coming from the doctor ....isn't it? I am so happy that your daughter has reached that magic 10lbs! That is a very important milestone!
To better prepare yourself for the upcoming surgery, please place your Faith in the arms of Our Lord. If organized religion is not your cup of tea, then please begin finding a Place of Peace for yourself. You need to focus on Serenity, Calmness, & Peace.....your daughter will require a Strong Mama & it's up to you to provide this.
The 1st few days after surgery are a trial beyond belief & your daughter's appearance.....hooked up to everything will be visually daunting. I am NOT trying to scare you....I am trying to prepare you. I want you to focus on your LOVE for her....& totally block out all fears of all of that equipment. That equipment is what is going to pull her thru. To help prepare, ask for a tour of the facility where she'll be after surgery...get to know the staff, the environment....ask questions & listen to those answers. The more we know, the better we can cope with Life!
I wish you Peace. I wish you Faith. I wish you a Lifetime of Happiness with your Blessed child.
H., I have been in your shoes. Our son was born with 5 heart defects including ASD and PS. He had his 1st heart surgery at 11 days old and his second at 6 months (when he hit the magic 10lbs:) . He still needs one more when he is 3. He just turned 2 and is doing great! Both of his surgeries were done at Children's Mercy by Dr. Lofland---there are no words to express our gratitude to Dr. Lofland or CMH!!!
Are they doing her procedure through open heart surgery or a cath? If it is OHS, then recovery will take a little while. We were in for 30 days for the 1st surgery and 6 for the 2nd. Every surgery and every child is different.
We belong to a wonderful CHD support group that meets at CMH (Children's Mercy Hospital) and they also have a group that meets in Wichita. The website is www.chdfamilies.org.
Also, we stayed at the Ronald McDonald House during both surgeries. We had a great experience there.
Please email me back if you have any questions. You will be scared, stressed, etc...that's very normal! Hang in there and pray!
