1) Our faith - We are so grateful to God that He was with us through this. We don't fully understand why He allowed it to happen (but we know that He did not cause it). "We know that we know that we know" that we will see her again one day and continue to put our trust in God, the author and creator of our faith.
2) Stay focused on your child and not the medical condition - don't get bogged down with the medical details. Yes, you need to know and understand what is going on to ensure the best possible care; but remember this is your child, a person in her own right, and it most important that she is loved as well as receiving the best care possible. Don't focus on the disease - focus on your child and the precious moments you with them him or her. You never know how long it will last. In fact, this is probably good advice for all parents, even those with healthy children.
3) Our support system - We could not have done without the wonderful support and sensitivity we received from our pastors, family and close friends. We especially appreciated the spiritual support in making the life and death decisions related to Madeleine's care, and the practical support of being provided with food by others on a daily basis for weeks. There were daily phone calls, emails & text messages - so many that we couldn't respond to them all, but greatly appreciated the continued emotional and prayer support that we received from so many, even those unknown to us. We also greatly appreciated the sensitivity and loving care given by the NICU nurses, many of whom we got to know personally and greatly appreciated the emotional inputs they gave in caring for Madeleine and us, during her long stint in hospital.
4) Talking to people in the same situation - We had friends who lost a daughter in very similar circumstances a few months before us. For a number of months after Madeleine's death they were the only people we could really talk to or spend time with. We felt that only people that had also lost a child could truly understand and would not trivialize our experience. Since Trisomy 18 is incompatible with life, it was difficult to find anyone in the same situation, although we did make contact with a family with a son with partial Trisomy 18, but even this was not the same.
5) Allow time for grieving and healing at the right time - one of the best pieces of advice we were given was not to grieve too soon and to enjoy our daughter while she was with us, as there would be plenty of time to grieve afterwards. This is very difficult when you never know if this may be the last time you hold your baby or change her nappy - but we are so glad we listened and loved her as best as we could while we had her with us.
After she died, we literally cut ourselves off from a number of friendships/relationships and even extensive time with family as we just couldn't face it. This lasted for about a year or so and was nothing personal - emotionally we could only be with a few very close friends as we couldn't predict how we would react to specific situations and had to take it slowly to enable us to grieve and heal properly. Thank you to so many of our family and friends who understood this and gave us the time and space we needed.
6) Specific literature & books - After Madeleine's death, we were given several books. Specific parts of these helped us immensely, including a chapter called "The Broken Wing" from a book called God's Front Door and a book entitle "From grief to Glory: Spiritual Journeys of Mourning Parents" by James W. Bruce III.