Just some helpful tips from Hydrops parents
~Bring a small notebook to write down what your told, and write down any questions you think to ask so you don't forget. It is a very stressful and often very hard to remember all the medical terms and procedures that you and your doctor discuss, a notebook can be very helpful.
~Find ways to connect with other Hydrops parents: Join some support groups or forums. This way you can get advice and support, and often learn of new procedures or recommended doctors and hospitals in your area.
~Don't be scare of getting a second opinion. If you feel like the doctor your seeing doesn't have enough experience with Hydrops babies or that the hospital may not be equipped to take care of your baby, look around. Find the people who you feel will fight as hard as possible for your baby.
~Ask for a printed copy of test results. That way you will be getting all the information, since it can be very hard to remember everything in the moment. *These can also help when getting a second opinion so you don't have to have the second doctor contact the first in order to receive these.
~It is so hard to be in this situation where there is only so much a parent can do, go to extra Church groups, even talk to a counselor if you are feeling over whelmed, and PRAY God is with you he knows what your going through, don't be afraid to talk to him.
~During pregnancy drink plenty of water and eat as healthy as possible: Many mothers have said that in their personal experience with Hydrops they noticed an improvement when switching to a healthy and high protein organic diet. The healthier mom is, the better off for baby.
~After baby is born if they are in the NICU It is best to breastfeed. These baby's bodies are working so hard to fight the Hydrops, breast milk will benefit them and also reduce the risk of necrotizing enterocolitis (NEC) (a possibly deadly condition that preemies and sick babies are at risk for).
Its hard to think of, but sadly their are many babies with Hydrops who don't survive. Make the most of the time you have with them, no matter what happens. Journal your pregnancy (they even sell special "pregnancy journals"), Take lots of maternity and family photos, get 3D ultrasounds and video, record baby's heartbeat, don't back out of doing things like a gender reveal party. If you have a special little toy you bought for baby, some parents find it comforting to bring it with them to doctors appointments.