Elizabeth and Stacey,
First, what a cuties! I am a child care teacher and have a joyful time with kids' curious minds, enthusiasm and sense of fun.
Although I am a male, I AM a survivor of three open heart surgeries, the first when I was 9 years old, in 1968. (All but a few dinosaurs were gone). When it comes to open heart surgery, I believe gender does not discriminate; we all go through the angst, worry, and recovery situations pretty similarly.
Elizabeth, back in 1968, surgery for one so young was something eager cardiologists could only dream about. I was born with an aortic stenosis in 1957, and my chances for survival at nine were 50/50. I am certainly not mentioning this for frights, in fact I applaud the amazing leaps and bounds that cardiac surgery has made in ten, twenty, and on and on!
In fact, in 1976, just eight years later, I was able to receive a prosthetic aortic heart valve, that is still going strong after 40
years!
I love having joined this site. It feels therapeutic, and I feel I can "give back" to parents, adults and patients some hope and perspectives.
I think the only real discomfort after all these surgeries was the chest pain from the sternum; not everyday your sternum gets opened, yet today many cardiac procedures involve that. And wow, did my chest itch!
Elizabeth has given great "mommy" advise for you and your child! Thanks Elizabeth!
As far as the worry and fright for your young warriors, it a normal human response to all the unknowns, and I believe makes us warriors as well. My parents, god bless them, were always with me, and that was a gigantic help. Aunts, Uncles,and other relatives came to visit me with cards, humor and support for both me and my parents. One uncle even had the New York Mets autograph a baseball for me, a year before they won the World Series!
I am not sure if therapy animals are allowed after surgery, but that's another idea.
Back then, way back then, parents were not allowed to stay overnight with their kids....THAT was scary for me. I felt alone and scared as a youngster.
Elizabeth, may I propose that this upcoming surgery can become another, amazing adventure for both warriors? Maybe have picture books to show all your kids what the body does, thats amazing too. Blood, bones the heart, and maybe show what will be done to help your
daughter see, in her own way. Knowledge is power, and this curious kiddo can really help the family all be a part of this event.
Please stay in touch, I am eager also to share the event during the summer. Remember, out of fear, comes courage.
So glad you are all getting the support you need.
Ken Levine
Middlebury, Vermont
802-236-8186
------------------------------
ken levine
volunteer, retired
802-236-8186
kenpaullevine@gmail.comMiddlebury, Vermont
05753
United States of America
------------------------------
Original Message:
Sent: 04-12-2019 09:50
From: Stacey Coupe
Subject: Welcome and Introduce Yourself
Hi Elizabeth,
Congratulations on the privilege of being a heart mama! My 10 year old daughter is my heart hero. She was born with half a heart and has thrived through 5 heart surgeries and many hospitalizations. It has been my privilege to grow with her in the heart community. Its not an easy journey but it has brought so much good into our lives.
It's wonderful that you are reaching out and have time to prepare for her surgery this summer. I am a planner, and have had too much experience in this area. So below are many things that helped me and that I've learned over the years. It may be too much for what you need or want but hopefully you find some if it helpful.
You mentioned having a large support in family and community. This is wonderful! Everyone wants to help, support and feel they contributed to your time of need. However, I absolutely agree with Peggy that keeping people physically away is best for your daughter.
I found, over the course of 5 open heart surgeries, that setting tasks before the surgery worked very well. I found these things allowed for my support system to be involved and connected while providing me the space needed to focus on providing snuggle time and calm, quiet recovery for my daughter.
For example,
1. I asked a group of friends to arrange and DROP of meals for my family for a week.
2. I asked my mommy group to have their children create a "wall of wellness" for my daughter. This was AWESOME for my girl. (Picture Below). She felt so special!
3. I kept a daily blog specifically and only for the surgery so people could get updates without me calling, texting or feeling like I had to Facebook reply all day long.
4. I had family and friends pre-record little songs or story times that I loaded on her iPad so she could see her people anytime she wanted.
5. The day before discharge I had her Aunt set up a (very small and simple) welcome home table with prizes and balloons. (Picture below)
5. Once we were home, I allowed FaceTime visitors for 10-15 minutes a day. This was usually grandma time:)
As far as your son, most hospitals have a great ChildLife program. Please contact your facility to see if this is available. They are fantastic! They provide support to the patient as well as their siblings. They will take them on tours, show them the hospital, talk to them about their procedure, bring treats snacks and prizes to their room - for the patient and any sibling that is visiting. It actually gives them something to look forward to together.
Another great resource for keeping your family together during this time is the Ronald McDonald House. I cannot tell you what a great support this was for my family. They provide a place for you to stay close to, or on the hospital campus so that you, your husband, your son and your older daughter can be close to the hospital but not have to be in the hospital all the time. The house provides bedrooms, living space, laundry, playrooms and a kitchen. They have groups that come in to provide meals and treats. They give families blankets, gift cards, toys, prizes. It is also a place to connect with other families who are in the hospital at the same time is you. If your area has this resource I would definitely suggest contacting a social worker to see if this is something you can take advantage of. It is not income-based, it is medically based and a great connection for all people walking through these things.
As far as approaching "the subject" with your children, here are 2 books that I found helpful. The first is more for the parent and older children. The second is definitely for your young son and daughter to understand heart surgery.
I did a few things to personalize her hospital room stays too.
1. We made custom hospital gowns out of fabric designs she picked out (pictures below) She loved her "heart jams". Here are resources that will make them for you.
3. I created a "This is me" poster and hung it above her bed or on the door. I can't tell you the awesome connection this was with nurses, doctors and hospital staff. They were all very interested to see her pictures and story and it provided a sweet personal connection. They would all call her by her nickname or talk about her pictures. (Picture below)
I wish you all the best in this journey. I am sure that your daughter is going to superhero her way right through this.
You got this!!
Stacey Coupe
Washington, D.C.
Original Message------
Hi Elizabeth,
My daughter had open heart surgery when she was 7 months old to correct her VSD and ASD. As she has grown older she also had a leak in her heart valve that corrected itself thankfully. I understand the anxiety you feel. It was one of the hardest things I ever had to do was to hand her over to the surgeons and worry about the unknown. Her Cardiologist checked on her daily when she was in the hospital and called a few times after she went home. I called him anytime I had any concerns and he was wonderful!! Alyssa was my warrior. Recovery was not quick nor easy. I did not allow her to leave my home or visitors to see her during the weeks following her surgery because I did not want her exposed to germs. We had to be very careful of her incisions because they caused her the most discomfort. Her cardiologist did not send her home on any pain medications, so I used tylenol whenever she was uncomfortable. Kids are so smart and once they do something that causes them pain they wont do it again. She starting acting like herself again and became more active in six weeks.
Alyssa had a few bumps in the road over the years . She is now 22 and graduating from nursing school in May. She has told us since she was a little girl that she wanted to be a nurse and help children like her. Her story was a light for a few parents that she came across in her pediatric clinical. Even as the years have passed, You always worry and you never forget the anxiety or the fear you felt on that day you put her in the hands of the surgeon.
I wish your daughter and your family the best. Trust in your surgeon and your cardiologist!!!
------------------------------
Peggy McDonald
Eden NY
(716) 992-4329
------------------------------