For CHD Parents
1. Perfusion Scan or V/Q Scan - If you have a little one and it will not be performed in a children's hospital, ask to have a NICU/PICU nurse perform the IV. As you know, there hands are more experienced with little veins and you can save you and your baby a lot of stress.
2. Echocardio Scan or imaging - Try to save the bottle for the Echo, it will help your baby relax during the scan. I have heard of babies or toddlers being sedated for their echos and it is not necessary, nor have we ever had we to sedate or ever have been ask to sedate our kids for an Echo. And bring a favorite DVD or an iPad to help with distracting your child.
3. iPad - I know there is a lot of debate about video for younger children and it is not good a young age and I agree. However, as soon as your child is able to push the button of an iPad probably a little over a year, purchase an iPad or a tablet. It will come in handy for the endless amount of Doctor visits you attend.
4. Rock n Play - When your baby comes home from the NICU or later, we recommend getting a Rock n Play by Fisher Price for your child to sleep in. Two doctors along the way recommended this product and it is amazing. We think because the baby is used to sleeping at an incline in the NICU so coming home to sleep flat is difficult.
5. Try to smile - With our first child we had a hard time with coping with what was ahead of us. My wife did not want a shower and the pregnancy really wasn't embraced as it should be as far as setting up the nursery and really just buying something for the baby. I remember my wife telling me stories how she was in a store and saw something cute but couldn't bring herself to purchase it. This changed a lot for our second child. We still had the same stress level but we sat down and talked about our approach and how we were going to try to embrace the pregnancy as much as we can or as much as she could with just being pregnant in general.
6. Home Injections - When giving shots at home please ask for syringes that do not have slip off or screw on needles. We have found that these types of needles waste .05ml of medication per dosing which adds up over the course of a month.
7. Answers - Give up on them. You will never hear what you want and most answers will begin with "We Don't Know." This doesn't mean give up on questions. You should always ask a thousand questions but don't expect there to always be an answer, actually you should expect to never hear an answer. Everyone's body is different and every defect is different or reacts differently. So you will probably never know why it happened. And you will not know how far out another surgery will be. With our son it was five to ten years at first and then at 18 months he needed another open-heart surgery. Answers will always change and nothing is concrete. Accept it and hopefully this will be a little easier.
2. Echocardio Scan or imaging - Try to save the bottle for the Echo, it will help your baby relax during the scan. I have heard of babies or toddlers being sedated for their echos and it is not necessary, nor have we ever had we to sedate or ever have been ask to sedate our kids for an Echo. And bring a favorite DVD or an iPad to help with distracting your child.
3. iPad - I know there is a lot of debate about video for younger children and it is not good a young age and I agree. However, as soon as your child is able to push the button of an iPad probably a little over a year, purchase an iPad or a tablet. It will come in handy for the endless amount of Doctor visits you attend.
4. Rock n Play - When your baby comes home from the NICU or later, we recommend getting a Rock n Play by Fisher Price for your child to sleep in. Two doctors along the way recommended this product and it is amazing. We think because the baby is used to sleeping at an incline in the NICU so coming home to sleep flat is difficult.
5. Try to smile - With our first child we had a hard time with coping with what was ahead of us. My wife did not want a shower and the pregnancy really wasn't embraced as it should be as far as setting up the nursery and really just buying something for the baby. I remember my wife telling me stories how she was in a store and saw something cute but couldn't bring herself to purchase it. This changed a lot for our second child. We still had the same stress level but we sat down and talked about our approach and how we were going to try to embrace the pregnancy as much as we can or as much as she could with just being pregnant in general.
6. Home Injections - When giving shots at home please ask for syringes that do not have slip off or screw on needles. We have found that these types of needles waste .05ml of medication per dosing which adds up over the course of a month.
7. Answers - Give up on them. You will never hear what you want and most answers will begin with "We Don't Know." This doesn't mean give up on questions. You should always ask a thousand questions but don't expect there to always be an answer, actually you should expect to never hear an answer. Everyone's body is different and every defect is different or reacts differently. So you will probably never know why it happened. And you will not know how far out another surgery will be. With our son it was five to ten years at first and then at 18 months he needed another open-heart surgery. Answers will always change and nothing is concrete. Accept it and hopefully this will be a little easier.