PICU parent hour

Every Thursday, the Pediatric ICU at Primary Children's host a luncheon for the parents of patients in the PICU. Each week they have a different speaker to give information and assist with having a child in the ICU. Well, today, I was the speaker. I didn't give a speech so much as I talked with the other parents there. There were two families that should not be return customers, another mom who was waiting to find out if she would and a fourth that I knew from when Bridger and I were living in the PICU. I hadn't really written down waht I would discuss and since it was a smaller group, I decided it would be better to get a dialogue started. Each of the parents told me the story of how they ended up in the PICU and how their child was currently doing. One of the families was actually vacationing from Houston when their child became violently ill. I had talked with the dad about how Bridger had died at Texas Children's last summer. At the end, I don't know if I served the purpose I was signed up for, but we discussed the stressors of ICU life and how to cope. I hope that my being there and caring about their stories helped to provide some amount of relief to each of them. I know that me sharing my story about my beautiful son helps me get through the days. On a side note, Bridger's physical therapist gave a presentation today in which she used Bridger as an example. I like to think that it was because he was her STAR pupil. She will be sharing the information with me as I start speaking at different places to help spread CHD awareness. Bridger, I miss you so very much! It seems as though just yesterday I was holding you, but at the same time it feels as though it has been an eternity. I hope that you are behaving for grandma Jean, she will tell me if you are being a turkey! Make sure she gives you some of her yummy waffles if you like to eat now. I love you! I love you! I love you!

CHD conference

This afternoon, I attended part of the Congenital Cardiovascular Disease conference at Snowbird Ski Resort. This conference was intended for the medical staff caring for CHD kids, so there were many familiar faces. The main lecture I went for was the point/counterpoint of offering palliative care to HLHS kids. Though Bridger was not HLHS, I think this is a sensitive topic for any mother of a chronically ill child. Bridger's cardiologist, Dr. Puchalski represented the topic of offering palliative care to those diagnosed with HLHS and Dr. Birch, a CT surgeon represented the topic of not offering palliative care to the patient and moving right into surgery. I must clarify that these views are not specific to these physicians, but rather presentations that they were asked to give at this conference. Both of the doctors had strong points to offer. Dr. Puchalski pointed out that this is not a right or wrong answer and should be interpreted as a way to improve communication to parents of children with CHD. He offered many statistics on quality of life and development on children with HLHS. Dr. Burch presented the fact that if we only treated based on percentages, we would never have found cures for various cancers or other diseases. Both presentations were great and at the end, the microphone was open for comments. Two physicians stood and made their comments and when they were done, I walked up to the microphone for a comment of my own. I was so nervous and my whole body was shaking, here I am in front of a room filled with some of the brightest minds when it comes to CHD. I told them I was there speaking as a mom and continued on to say that we, as parents, rely heavily on the information given to us from our healthcare providers. I agreed with Dr. Pulchaski's point that parents deserve information, both positive and negative, regarding the child's prognosis and that this information must be free from the informant' s own bias. In the end, it is the parent that must live with the choices that they made about the care of their child. So, still shaking, I sat down. Dr. Cowley came to the microphone to ask the physicians at the panel a final question: If you had a child diagnosed in utero with HLHS, would you terminate it? One of the surgeons from another hospital grabbed the microphone and loudly said "I can answer that". He proceded, with difficulty, to tell about his daughter who twenty years ago was born with a diaphragmatic hernia. As a physician, he knew that the prognosis was not good, but they opted for surgery. She did not tolerate it well and he and his wife had opted to put her on ECMO (one last chance to live), she was never able to come off of ECMO and she died. He advised his fellow physicians not to answer that question unless they had personally lived the same situation they were discussing with their patients and parents. I was so grateful for this response, because it is absolutley TRUE! Even now, being a heart parent and knowing the life that may be lead, if Danny and I had another child and it was diagnosed with CHD, we would not be able to predict our wishes for that child. Sorry this was a long one.

Just a Reminder

The fundraiser is tomorrow (Saturday) 1-4pm at the Olympic Oval. We have some really great items for the silent auction including a "Getaway to Oregon", University of Utah signed football and 2 tickets to a home game, and many other exciting items. We also have and iPod touch with an iHome for the grand prize in the prize drawing and many other great prize drawing items. We are also going to have a big inflatable slide for a little added fun. We hope to see you all there :)

P.S. For those of you volunteering if you have a red Bridger or Intermountain Healing Hearts shirt if you could wear it that would be wonderful and if you don't then if you could just wear a red t-shirt that would be great.

Thanks and see you all there.

Paul Cardall

Last night, my heart mommy friend, Angela and I attended Paul Cardall's "Celebration of Life" concert. This was his first concert since he received a heart transplant 9.9.09. He had many guests performing with him and during his set there was a large screen that played inspirational clips. It was wonderful. Afterward, we were invited backstage. Angela knows Paul, but I have never met him. I guess some people have told him about Bridger and his journey here on earth. We only had a moment to talk, but it was amazing to see a 36 year old survivor of CHD. I know that when Bridger was here I needed to see people older than he was that were surpassing the longevity of their prognosis. Although Bridger journey was only 11 months and 4 days, I know that there are other parents out there who still need to see that it can be done. There child does have the possibility to defy the odds, to grow up and get married and have children of their own. Thank you Paul, for showing us that last night!

A little star-struck

For those who know me, you know that I am not easily impressed with "stars". And after what we have gone through the last two years, this stands even more. I don't understand why movie stars and professional athletes are paid so much, while the medical staff, who saves lives daily, makes so much less. My heroes and mentors are those who give so much of their time and heart to help those in need. That being said, I did have an encounter today that left me a little starry eyed. My sister-in-law, Nichole, had arranged for the Utes to donate some items for our auction. I was on my way home from work and I stopped to pick them up from the secretary. While I was waiting for her to return to her office, I was snooping a bit. I thought that maybe, if I stumbled upon Kyle Whittingham's office, I would ask for a moment of his time. There were only numbers on the office doors, so I didn't know which was his and was about to forget the whole idea. Well, as I was wandering, who should turn the corner to walk right toward me, Kyle Whittingham! I was debating on whether or not to say something. As he walked closer, I blurted out "can I walk and talk with you?" Kindly, he said yes. As we walked, I told him about Danny and I being season ticket holders and how this past season we had purchased Bridger's ticket. I told him about the coordinator who even moved our seats so that we would have room for all of Bridger's medical equipment. Then I told him about Bridger dying shortly before the season began and how we were never able to attend a Ute game as a family. I let him know that the Ute organization donated some items for our fundraiser and thanked him. He went on to ask about Bridger, how old he was and if he was our only child. I thought it was very kind of him to give me a few moments to tell my son's story. And though he is not a movie star, he is someone that my family watches every time he is on TV and we did watch him on TV with Bridger. As I left the athletics building, I called Danny, my mom and his mom to brag about whose office I had just been in. So, there is my moment. It makes me happy anytime anyone gives me the time to tell Bridger's story and the fact that this was our team's coach was exciting.

February 8, 2010

2 years ago today, Danny and I heard Bridger's heart beat for the first time. This was our confirmation that we were going to have a precious child of our own. 1 year ago today, our family had been home together. And though, only for a few days, these were days that we never thought possible after the struggles Bridger overcame in the hospital that winter. 6 months ago, today, I was holding Bridger's lifeless body in my arms. I know that his spirit and soul were no longer in there, but I was not ready to put him down for the last time here on earth. When Bridger and I moved to Texas, I had started to read The Purpose Driven Life, and the night before Bridger died, I had read the chapter explaining that this world is not the end. While reading, I was saddened, but at the same time comforted knowing that no matter what, I would be with my baby again. As I was reading, I did not know that this would be the last night I spent with my son. However, the next day, when Bridger died, this was the only thought I had that kept me from completely losing my mind. It is this same thought that keeps me going today. I know that Danny and I will be with our son again and that we will raise him where he will not have to rely on IV medicine and oxygen and feeding pumps just to be a baby. I miss him more and more the longer we are apart, but I don't ask why. I thank God every night that he won't suffer in this world anymore. Though Bridger was only here for 11 months and 4 days, I feel like he taught me more in that time than I have learned in 28 years. He forced me to live in the moment (for those of you who didn't know me before, I had life planned years ahead), he taught me not to judge others and their actions ( you never know the circumstances) and he taught me not to worry about the petty things in life ( he enjoyed playing with a washcloth just as much as a new toy). And though I still need occasional reminders, I try my best every day to live up to these lessons. For whatever time I have left on this earth, I will do my best to honor my son and try to help ease the suffering in those around me. Bridger, I LOVE YOU!

The Chosen Mothers

I saw this while blog stalking and it so reminded me of all heart moms, my wonderful sister in particular. I know it says cancer, but I think it is true of all children with life threatening illnesses.
~Jessica

THE CHOSEN MOTHERS

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer."
The angel is curious. "Why this one God? She's so happy."

"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair.
Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."