Thank you so much for allowing Sean and I to speak with you all today and more importantly, thank you all for being willing to be a part of such a sensitive and emotional journey families like ours unfortunately experience. I would like to start by telling you a little bit about the journey my family and I are presently on. It began April 13, 2010 when I was 20 weeks pregnant with our fourth child. My husband and I like most expecting parents were very excited and anxious to find out if we would be having another boy or another girl. We had finally settled into the idea of our expanding brood and greatly anticipated the day we would be meeting our baby and taking him or her home.
We quickly learned....things do not always go as planned.
On that Wednesday morning at our ultrasound appt. we heard what no parent wants to hear... that there is something wrong. We were told that I did not have any amniotic fluid and that we would need to see a specialist. Days later we came to Northside Hospital - this one to be exact and met with a perinatologist who had the heart wrenching job of telling us that not only did our baby have Potter's Syndrome in which there were no kidneys or bladder but that our son (yes, we were having a boy) IF he survived the pregnancy would only live a limited amount of time...minutes, maybe hours. As if this was not enough to process we also had a time sensitive decision to make. We had exactly one week to decide whether we would continue our pregnancy or would we terminate - what is referred to as a "pregnancy incompatible with life".
In that office our world stopped, in that office our world shattered
Everything we had planned and hoped for was now more uncertain than ever. We cried and we prayed. We desperately begged God to heal our son... We wanted so badly a miracle.
Yet, our decision to carry our son to term was fairly easy. My husband and I both believe in God and we have committed ourselves to His plan. We acknowledge that God is the giver and taker of all life.
That is our mind set - Thy will be done.
Needless to say the proceeding weeks and months were surreal....how do you continue being pregnant with a child you love so dearly and want so badly yet you know is going to die?
We chose to treat each day as a gift (or at least that is what we tried to do). We cherished each kick, we longed for every hiccup, and we were overjoyed every time we had the pleasure of getting a glimpse of our big guy on the ultrasound screen. We took LOTS of pictures and had several "first" in the womb...foods, music, places.....we tried to cram a lifetime into a few months. But our hearts were breaking and there was nothing anyone could say or do to change the inevitable.......
On July 28, 2010 the inevitable came......at Northside Hospital at 3:36pm Alexander Rivers Trimble was born. He was 5lbs 2ozs. with a head full of hair looking just like his Daddy! And at approx. 8:36pm on that same day Alexander received his Angel wings and departed this world. I can tell you that God planned his birth and death to perfection...Alex was born into a room of love, he was shared with many, and he touched everyone who met him. It was very important to us that Alex's life albeit a brief one was filled with love and peace. We understand that we could not have accomplished that alone.
We were blessed and very fortunate to have supportive and caring people walking this road with us as Doctors, Nurses, administrators, chaplains, family, and friends all willing to go above and beyond to ensure that we had the experience we desired with our son.
This brings us to why we are here today. As nurses, you have been given the unique opportunity to support and care for families like mine. I would like to offer some advice based on our experience that may be beneficial, at least I hope so.
The most important thing to know is that there is no rule book for this. Most if not all of these families have never been in this situation before and they may feel loss and uncertain about everything. The most beneficial thing you can do is be patient, be a good listener, and remember that no matter what the circumstances are, they are expecting or new parents like anyone else.
When we first met Aimee Alexander, I left in tears of joy. It meant everything to us that the hospital was so accommodating to our requests. We were able to design a comfort care plan that we were comfortable with and most importantly we were being treated like real expecting parents and our son was acknowledged as a real person, not an unnecessary expense. That meant a lot to us.
Also, please know that it is okay to express how sorry you are. It is okay to let them know you care. It is okay to show emotion.
During my labor and delivery, we had the pleasure of having nurses that were extremely sensitive to what we were going through. I had nurses that cried their entire shift and nurses who showed no outwardly emotion but took great care of us - I want to tell you BOTH were appreciated and BOTH were okay. It meant the world to see Nurse Monica cry after Alex died - it showed that a connection was made and that she cared. It was welcomed. And it was comforting to have Nurse Ashley - she was a calm in the midst of a storm and although I never saw her shed a tear I knew she cared. That response was also welcomed.
Another suggestion is to walk into that room with an open heart and an open mind. There are so many false stigmas about perinatal loss. Women are encouraged not to get too attached to their babies. Families are discouraged from having the kids involved. I can tell you NONE of that holds any real truth. Although my son died at 8 something that evening we kept him until the next day in the afternoon. And I know that may seem shocking to some but that time we shared was priceless. I appreciated that none of the staff made us feel uncomfortable about doing that. In fact, I would encourage any mother to keep their baby as long as they wish. They will have a lifetime to feel those aching empty arms, encourage them to cherish the time they do have. It is a very painful experience leaving the hospital without your baby so please understand when that time is delayed.
Something else we did was incorporating our other children in Alex's life. We took maternity pictures as a family. They were there for the entire labor and delivery and they helped Nurse Ashley give Alexander his first bath. That time was priceless and has helped in their healing. Alex was no longer a "myth" - they got to see him, hold him, and kiss him. They got to see their parents show love and mourn. Some may say that would traumatize a child but it was quite the opposite. It helped them because they too got a chance to express their love and say good bye to their baby brother. They continue to be a part of the healing process as well. We honor Alex as a family - we participate in the A Walk to remember, we light candles, we talk freely about Alex, and this July....we are having a HUGE celebration in his honor.
Finally, help them develop a personal connection and create lifetime memories with their precious baby. Labor and delivery in a healthy pregnancy can leave a woman emotionally and physically drained. Times that by one hundred when dealing with a perinatal loss. These families are in not only an emotional state, at times it can be a confused one. Their minds are cloudy and judgments can be impaired. It is nice to have a caring nurse remembering the things you may regret that you have forgotten. Refer to their child by his or her name. Encourage them to bond with their precious baby. Help them create memories (pictures, footprints, locks of hair). There is an organization called Now I lay me down to sleep - it is comprised of a group of photographers that volunteer their services to families under these circumstances. They are on call and I strongly encourage you to offer this service to any family that has found themselves with limited time with their newborn. A way to approach this would be to let them know those images captured are priceless and even if they have no interest in them now, in the future they will be so glad they were able to document their child's life and death. I had my own reservations but I can tell you some days those pictures are what get me out of bed.
Well I hope I helped shed some light on what we as grieving families benefit from during our hospital stay. Please know that you will always hold a permanent part in these families’ stories. A part that you may never be thanked for or acknowledged for but please know that you play a part that we could not make it without.
It has been exactly 6 months to the day that our Alexander came and departed. Our hearts are still broken. As grieving parents the pain and gaping hole in our hearts will never go away. Grief is a lifetime process. You do not get over a loss of a child; instead you learn how to live with it. There is something fundamentally unnatural about losing a child. I carry my love and my longing for Alexander everywhere I go. His love and his story is what keeps his memory alive. As we continue this journey we heal in moments like these. We love sharing his story and we take comfort in knowing Alex’s life was not in vein. He has blessed us and changed our lives and we are better people because of him. Thank you