1. Take the tour. If you have the benefit of finding out your child has a heart defect at your 20 week ultrasound then you need to take advantage of the tour offered by the hospital. We were fortunate and spent the day walking around the hospital and were introduced to the NICU.
2. Get rest at home now. For both parents, especially the mother because of the fact she will have to deliver, it is important that you get your rest now while at home because you will need it in the NICU and during the birth of your baby.
3. Plan on spending an extended period of time at the NICU. Our son stayed in the NICU for 28 days and our daughter stayed in the NICU for 19 days. Get used to the idea now that you will be spending a lot of time in the NICU. If it is your first, you will be spending more time than if it is your second child. For our daughter's stay we tried to be home every night for dinner with our son and drop him off at preschool in the morning. It did not always work out but for the most part it did. Remember that the older sibling will know you are gone and your newborn will not know. And in the NICU you can leave but once your child is older in the PICU, you will need to be there all the time or one of you at least.
4. Find out about visitor policies. If there are kids allowed, probably not but siblings are, etc.
5. Be prepared. Bring socks, blankets, hats and onesies for your newborn. Bring the onesies that snap open in the front so it is easier access for the monitor wires. Bring magazines and books or ipad for yourself. Also bring pictures of the family or any religious artifacts you want for the bedside and to place under the mattress in surgery.
6. Pick your nurses. The nurses are all wonderful and there for a reason but they all have different styles. If you do not get along with a nurse ask your social worker not to have that nurse again. And better yet, create a list of nurses that you want to have. Your nurse is your baby's angel and yours too.
7. Ask Questions. Don't be afraid to ask about the multiple medications your baby is getting. And ask to hold your baby when you want to because they have no problem saying no and explaining why it is not a good idea. The Doctors will do their rounds in the morning so try to listen in if you are there and ask questions if you don't understand something.
8. Don't Argue. The doctors and nurses there know best. So listen to what they say and don't talk. You are your baby's advocate and will need to speak up for your baby's health but pick your battles.
9. Get involved. Your baby will need his or her temperature taken and diaper changes. The diapers will need to be weighed. Those are the things you can do and should be doing to help your nurse out and more importantly interact with your baby.
10. The machines will beep. The monitor will beep sometimes constantly, the medication pumps will beep when they are out of medicine so you need to get used to it and become aware of when it is an issue and when it is normal for your own sanity. And try not to become obsessed with the monitor, it is easy to become fixated on your baby's vitals but try not to do it.
11. Ask for Privacy if necessary. Doctors and Nurses might speak to you in an area where there are other parents around. If that makes you uncomfortable, ask to go to a private place. There are rooms designated for that.
12. Your baby cannot eat. Your baby will be fed via IV. It is tough to get used to the idea that you cannot feed your baby milk or you will not be able to breastfeed your baby. But your baby does not have the strength to breath and eat at the same time now. So your baby will only be fed through an IV. Try to think of that now and know if you plan on breastfeeding, that in the beginning you will be pumping and freezing your milk for your little one to eat later.
13. Weekends are slower. You will notice that weekends are slower than weekdays. Your baby will still get the best care and there will always be Doctors around but the executive decisions usually occur during the week. And there are not as many people at the hospital on the weekends so take advantage of the downtime and try to relax.
14. Talk to your social worker. Our social worker was wonderful and assure you still is. Talk to your social worker if you have any concerns or questions about the care of your baby.
15. Bring your support system. Surgery day is tough and every day is tough but you will need support on the day of surgery. So try to bring your support system with you the day of surgery because it is a long day.
16. Post-Operation No words I write will prepare you for the first time you see your child after heart surgery. I am sorry. But when you take the tour, if you are able to ask and if you are able to as a human being, ask to see a baby that is recently out of surgery to try to prepare yourself. It might help with the first time you see your child.
Please contact us if you have any questions or if you have anything helpful to add to the list. Thank you!