Parents Wishes for the birth and care of Lily Kathleen Bryan
by Kathleen Buckley and Ken Bryan
Lily has defied a great number of odds to come into our lives. We believe she is a strong person and that her soul has great purpose. Since we learned of her diagnosis of Trisomy 18, our objective has been to give her a chance at life; we want to learn what she has to teach us and we have already learned a great deal. We feel blessed by Lily and we approach her birth as an occasion to celebrate. We ask that all who are involved in her birth and care know that we love and celebrate our miracle daughter. And though we are understandably fearful that she will die, we are very excited to meet her and welcome her into our family.
Birth:
Medical Decisions:
We know that after her birth, she and Ken will go directly to the “R” room, while Kathleen is being sutured in the operating room. We ask that standard resuscitation efforts be made, including CPR, intubation and epinephrine if necessary. Ken will be present for all procedures in the “R” room, and may exercise the right to change these instructions at any time.
We request that Lily be kept in the “R” room until Kathleen is able to come into that room and see and touch her. We know that in addition to Trisomy 18, Lily has Spina Bifida. We don’t know how this will complicate her immediate care, but if it is at all possible, both parents would like to hold her, or at least touch her, before she goes to NICU. We do not want to compromise her in any way (cause more spinal damage, or increase her risk of infection) however, it is important to us to be able to have skin to skin contact with her as soon and as much as we can.
We ask that one or both of her parents are with her at all times.
Celebration:
As stated earlier, we feel that no matter how long her life, Lily’s birth is an occasion for celebration. To that end, we plan to baptize Lily in the Roman Catholic faith. Chaplain Jill J. will perform the baptism in the presence of all of Lily’s family and an additional minister, Rachel D. We wish to video tape the baptism. We also plan to have a toast to Lily, with sparkling cider. In addition, we will have a photographer come to the hospital to photograph Lily and her family, particularly her brothers and parents. We wish to allow Lily’s brothers to spend as much time with her as they wish and that her grandparents and aunt may also spend some time with her in NICU.
Feeding:
Surgery:
Post Surgery:
In Case of Death:
Lily’s Home Page |
Lily's Life Story |
Images and Song |
Poems and Letters for Lily |
A Special Gift |
Trisomy 18 Links and Info
Lily is scheduled to be delivered via c-section on Monday, November 28, 2005. Her father (Ken) will be in the operating room. The rest of Lily’s family (grandparents, aunt and brothers) will be waiting in the waiting room until Lily is stabilized enough to visit.
It is impossible for us to predict or address all the various possible treatment and resuscitation scenarios that may be presented at the time of her birth. Our guideline is that Lily should be treated with the same care and diligence as any other baby who is expected to survive. We expect that we will have to make some difficult decisions and we are prepared to have to think clearly and quickly. Nonetheless, this is our daughter and such decisions may be difficult. We will need as much time and privacy as possible to discuss options when they are presented.
We wish that Kathleen try to nurse Lily. If this is not possible because of Lily’s condition or her Spina Bifida, we wish that Kathleen pump breast milk to be fed via bottle or feeding tube. We wish to see a lactation specialist as soon as possible to start that process. Kathleen has breast fed one other child, but it has been quite a long time!
If Lily is deemed stable enough to withstand spinal surgery, Dr. Monica W. will perform the surgery. Ken and Kathleen have met with Dr. W. twice already and she is aware of the situation and agreeable to it.
Once Lily is stable enough to come home, we wish to bring her home with us and work with hospice care.
If Lily dies during her hospital stay, we want to spend the maximum allowable time with her. We wish that her brothers and grandparents (if they so choose) be included in this family time as well. We wish to cast her feet and hands and have a kit to do so. We wish to bathe her and dress her before she goes to the funeral home. If Lily has hair, we wish to save a lock of it, as well as mementos from her birth and isolette. We wish to have a professional photographer photograph her. We have made preliminary arrangements with Riverview Funeral Home. We have mementos to send with Lily to the funeral home. Lily’s birth certificate and death certificate should read her full name: Lily Kathleen Bryan.