Tue, 6/23/2009 9:02 AM
Thank you all so much for following us up to this point. I really had the best of intentions to update the blog at least once in the past three days, but as you can imagine, the hours and days FLEW by!
Friday morning, Tim's Uncle Allen met us in D.C. He lives in Virginia Beach, and we were so happy he was able to make the drive to spend some time with us over the weekend. Jennifer and her husband Lucas also stayed and were wonderful guides, Metro navigators and great help with the kids. The seven of us had some wonderful adventures!
We spent our final days in Washington being "sight see-ers" as Madeline says! We visited the Smithsonian Air and Space Museum as well as the American History Museum. Eli loved all things airplane, and we were all in awe of the REAL Star Spangled Banner on display. I think each one of us learned so many new things and had so many questions to look up later. Museums have a way of sparking your interest and inspiring you to find out a little more! We also took a tour at the Bureau of Engraving and Printing so Madeline and Eli could see how dollar bills are made. We ate dinner in Chinatown, had a nice walk, and even got to watch a woman making won tons in the window of a restaurant. We visited the Lincoln, Korean War, Vietnam War, and FDR Memorials and Arlington Cemetery also. We loved riding the Metro back and forth and acquired quite a few miles on our walking shoes!
We had such a wonderful time! We want to thank Jennifer, Lucas, and Allen for everything. You were all so understanding of our slower pace with kids and so willing to do whatever was needed to make things easier. We also want to thank Meri and Maureen of Le Bonheur for including us on this trip. There really is nothing we can do that would ever come close to what the people of Le Bonheur have done for us. It has been a privilege and an honor to be associated with Le Bonheur and its ideals. Thank you to all who have been following the blog and sending us your support and well wishes. We have felt so encouraged thanks to you! Thanks again, and we will see you all soon!
On the Hill
Thu, 6/18/2009 9:21 PM
We have felt so much comraderie with the other families participating here. We saw many of them in the halls, in the Rayburn Room, and along the streets surrounding the Capitol. It's only been a couple days, but we feel like we have made some new friends; I guess since we are all so passionate about the cause, there is an immediate bond. Madeline even noticed twin girls Andrea and Alyson are always chewing gum, so she told them today that if their gum got yucky, we had some they could have!
We had a nice lunch provided by NACHRI. There was enough time to relax and take a breather. Eli even fell asleep in the stroller on the way there. Next, we were on to meet with Senator Bob Corker's staff. Senator Corker himself was not able to meet with us because another meeting was called at the last minute at the same time as ours. The meeting with his staff was productive; they were open to our points and eager to talk about their recent support.
We traveled back and forth between the House and Senate several times. We were so thankful to have Tim from NACHRI along with us. He was wonderful with the kids and had so much energy! We were also very lucky to have had staff members take us through the underground tunnels! It was so awesome to see some things that we will probably never get to see again! Later in the day, we even got to ride a miniature subway that the legislators use to navigate the Capitol. As you can imagine, that was the hit of the day for the kids! We headed over to the House side to see Congressman Marsha Blackburn. We waited for her around the Rayburn Room as she was to come out to see us from another vote. We met her in the hallway, and she asked Madeline what she was doing here, and she said, "We're sight-seers!" We asked her to tell the Congressman what Le Bonheur did for her, and she said, "Le Bonheur helped my heart." It was so fun to have Madeline participating along with us - she was much more a part of the conversation than she was in Nashville only a year before. We were able to have just a few words with Congressman Blackburn, and then she was off to the floor again.
To get back over to the Senate side to see Senator Lamar Alexander, we got a very special treat! We took a short cut across the rotunda of the capital thanks to the "staffers" leading us. It was beautiful! There was a statue of Ronald Reagan that had just been unveiled last week, huge paintings, and the intricate detail of the dome was amazing. I guess we've been talking a lot about George Washington because Eli pointed to his statue and said, "That George Washington!" We both started cracking up and couldn't believe he actually said that! Madeline kept wanting to see where his "wooden teeth" were!
We made it to Senator Alexander's office and were able to meet with some of his staff also. They were very attentive and interested in what we had to say. Maureen talked about needing incentives for doctors to pursue specialities in pediatrics, and we all talked about all kids needing access to affordable healthcare. When Senator Alexander came in the room, Madeline went up to him and said, "Children's hospitals help me and other kids, too!" That was all that needed to be said! The Senator looked at her and said, "Well, it looks like they did a pretty good job!"
After our long day on the Hill, we rode the Metro back to put on comfy clothes and have some dinner. Now, we are trying to process all that happened today. We feel so fortunate to have been asked to represent Le Bonheur here in Washington. It was such an honor, and we felt so empowered to see our lawmakers at work and listening to what their constituents have to say. We hope we have made some impact on their thinking about children's health care issues. Thank you for all your support and interest in this blog. We will have a couple more updates as we tour around D.C. the next few days!
Wed, 6/17/2009 10:16 PM
Tonight was the big party with all the families and kids. Madeline enjoyed the dancing and face painting as well as making many new friends and trading cards that have each child's picture on the front and story printed on the back. Eli enjoyed picking out a new toy car as well as "exploring" the hotel by running out of the ballroom several times this evening. Many thanks to our new friend from NACHRI, Tim, who was wonderful entertaining Madeline and Eli. He has also been a great source of information, a much needed extra pair of hands, as well as an excellent tour guide this afternoon.
We were able to talk to a family from Florida and share our excitement about the Family Partner's Council and family centered care. They would like to start a Family Partner's Council at their hospital so it was great to see the goal of families interacting and sharing experiences happening right before our eyes.
We are looking forward to our big day on Capitol Hill tomorrow! We are so excited to have this opportunity to speak to our legislators about Le Bonheur as well as the importance of children's healthcare. Our first appointment is at 11:00 a.m. We will update tomorrow afternoon on all our meetings. Thank you for following us and for all your support.
Wed, 6/17/2009 4:14 PM
We are just getting up from a much needed nap! The kids slept great - they must have been exhausted from our fun filled morning! We started the day with a little swim in the hotel pool. Madeline has been talking about doing that since we got here! After breakfast, we had a radio conference call. Tim, Aimee from NACHRI and I answered a few questions about Madeline and talked about our goals here tomorrow. Tim did such a great job talking about wanting to put a family face on the issue of children's healthcare; it was really moving - he is very good at putting things just the right way. Madeline got a chance to talk also.
After the interview, we were off to the Smithsonian's Natural History Museum. We got to see dinosaur bones, a huge elephant, the Hope Diamond, and a beautiful butterfly exhibit with live butterflies. The kids really enjoyed seeing so many different things. Eli's favorite was a huge flawless crystal ball, and Madeline said her favorite was watching a movie about oceans on a huge revolving "Earth" screen.
Then, we had a great lunch with the other families here for FAD. Madeline got to meet some of the other kids and exchange baseball cards. All the kids got cards to give to the legislators and some extras to trade with each other. She was especially excited about meeting Abbigail from the Indian Mound, TN - we had been reading her blog through Monroe Carrell Jr. Children's Hospital at Vanderbilt's. Tim then went to a training meeting while I took the kids back for a nap.
We are off to a sculpture park with fountains and then back to the hotel for tonight's big party!
Tue, 6/16/2009 9:56 PM
We've made it to D.C. Madeline and Eli had a great time on the plane, enthralled with different things to play with and the airplane ride in general. We got here with just one mishap - our luggage didn't make it on our plane! But, no worries - it just arrived at the hotel at bedtime.
We were so excited to have lunch with our friend Sharon from NACHRI. Madeline had so much to tell her; it was great to catch up. After lunch and a nap, we did some site seeing around the Mall. This is such a wonderful city with so much to do and see. Being able to walk everywhere is so nice . . . we walked by the White House, the Washington Monument, and spent some time at the World War II Memorial. Madeline and Eli enjoyed running around the fountains and throwing in coins. We rode the Metro to Union Station for dinner. Eli was completely enamored with the trains and they both loved the ride!
The kids are now asleep, and we are headed that way! We are looking forward to another full day tomorrow and will hopefully post an update in the afternoon and evening.
The Countdown is On!
Mon, 6/15/2009 4:04 PM
Tomorrow we will arrive in D.C. around lunch time. It will be the perfect time to grab a bite and let the kids rest at the hotel. We will be staying at the J.W. Marriott which is just a few blocks from the White House! Kids from other children's hospitals attending Family Advocacy Day will be staying there as well. Jennifer talked about the kids making new friends in the elevators and hallways last year, so we are looking forward to that for Madeline and Eli. We hope to catch up with Sharon Laden from NACHRI who trained us last year in Nashville. She is so encouraging and really makes us feel like we can make a difference. After a nap, we are planning to take on the city, ride the metro, and go somewhere like the zoo or do something in Maureen's book about things to do with kids in D.C.
Wednesday morning, we will be up early for a radio tour and a training session. We will also have some time to do some site-seeing with other families here for Family Advocacy Day. That evening there will be a Family Networking Dinner, or as Madeline says, "a party with all the kids!" That should be a fun way to meet people and share experiences.
Thursday is the BIG DAY! We will see Congressman Steve Cohen at 11, Congressman John Tanner at 1, Senator Bob Corker at 2, Congresswoman Marsha Blackburn at 3:30 and Senator Lamar Alexander at 4:30. So, it will be a full day! We are looking forward to meeting them and reminding them of children's health care issues.
After Thursday, we will stay a few days to tour around, explore, eat good food and just experience D.C.! We will return home on Sunday. Thank you for following along with us!
We also wanted to mention something wonderful that happened at Le Bonheur on Friday. For the first time ever, a parent was able to go back with her child before surgery and stay with him until he was under anesthesia. Wow, I can only imagine how wonderful that must have been for Joanne Cunningham (our Family Partner's Council Chairperson) to see exactly was happens to her son, but even more, how wonderful that must have been for Jacob to have his mom right by his side to make things more bearable and less scary. There is nothing worse then sending your child through those double doors and seeing her sweet tear stained face turn around to look for you and her arms reach for you, but you can do nothing. It's hard for the parents and so hard on our precious little ones who just want their mommies and daddies. Parents can already wait with their child in recovery, and this is just another step toward Family Centered Care. Both these changes are a result of Joanne's work on the Family Partner's Council. Kudos to you, Joanne - you are truly an advocate for all children and an agent of change. An article in the Commercial Appeal explains this momentous event more thoroughly.
Our Life Now
Sun, 6/14/2009 8:28 PM
We stop for a quick dose of medicine four times a day and see Dr. Joel for regular check-ups every two or three months. He keeps a close watch on Madeline's pulmonary pressures in hopes that the therapeutic medicine and new lung tissue growth will result in more relaxed vessels and eventually NORMAL pressure readings! We pray every day that Madeline would grow out of this pulmonary hypertension. Since the ballooning procedure in Boston, Madeline's mitral valve has opened a great deal. It is still somewhat tight and there is some blood flowing backwards, but Dr. Joel thinks it will be a long time before she will need surgery on that valve. And, who knows, with the fast pace of technological developments, maybe when the time comes the mitral valve could be accessed through a cath or the side of her chest rather than through open heart surgery. Until then, Madeline takes her medicine like a champ and we all keep praying!
Since that beautiful spring day three years ago, we have felt the gamut of emotions. A month after Madeline's open heart surgery, she was in heart failure again. We became so weary and scared with every check up that she would again need some intervention. But now, what we mostly feel is such hope and confidence that everything is going to be okay. God has given us amazing strength through overwhelming moments and the doctors and nurses wonderful skill and beautiful compassion. We are so thankful for this and so hopeful for the future.
Madeline is quite the determined little girl. We know she has been given the gift of many second chances, but we also know that her spirit of perseverance has served her well. One day after surgery, our ten month old was still intubated and groggy with sedation, but as doctors surrounded her bed to discuss her progress and care, she lifted her little IV poked arm and waved to them. We knew then that she had some drive and spunk! She talks about wanting to be a ballerina teacher, a mommy and a doctor, and knowing Madeline, she will be able to pull all of that off!
Fri, 6/12/2009 11:13 AM
We went out to eat for dinner last night, and a flood of memories came to me. As I watched Madeline eat spoonfulls of macaroni and cheese and two helpings of salad with gobs of ranch dressing and Eli move croutons around the table like cars, taste and swallow black olives and shovel fistfulls of mac-and-cheese in his mouth, I realized how far we've come.
From eating at restaurants with our ambulatory feeding pump that gave liquid nourishment directly into Madeline's stomach while she looked at and sometimes touched the food we were playing with in front of her to her actually eating . . .wow! This result of our feeding journey did not just happen with time; it was only after deliberate individual and group feeding therapy every week. It was more than therapy; it was the FANTASTIC people who carried us through those frustrating and terrifying months. Our feeding team at LEAD, Melissa, Jenny, Jill and Erin, encouraged, hugged us through and taught us how to cope with a child who was literally failing to thrive.
There are so many people like Becca who have impacted our lives:
Amy in the ER who said, "I think we need a cardiac consult"
Kay from the Pedi-flight team who got an IV in Madeline beside a mom who was so scared her daughter would pass out when she cried (which she did and Kay handled it so well and the IV lasted all 15 days!)
Dr. Wetzel who did an echo himself on Madeline at 10 p.m. in the ER
Dr. Joel Lutterman who was so kind to pull me in the hallway so we wouldn't disturb her as she slept while he explained with hand drawn pictures and all what was about to happen
Dean who took Madeline back to have a heart cath in his big loving arms
Amberlee, Stacey, Allison, Nikki, Charlotte, Kristy, Dana, Suzy, Gwen, Lindsey, Linda, Hilary, Sonya, and all the fabulous nurses on 7West whose care for Madeline was extraordinary and love for us was so needed
Dr. Guillory, Joe, Whitney, Stephen, Michelle, Jenny and Sarah in the ICU
Amy, our good friend, and X-Ray tech who helped us find a place to sleep for three hours one night when Madeline was in ICU
Sharon who did an echo on Madeline the day after her surgery and still spoils her rotten at every check up
Chris who did an echo and discovered the power of Baby Einstein
Kristen, Matt, Angela, Ann, Renee, Johnny, Norma, La Donna, Judy, Linda, Holly and all our echo and EKG friends who make Madeline and Eli feel like they are the only kids in the world every time we see them
Dr. Blakely, Dr. Meyers, Dr. Gilbert, Dr. Karkerra, Dr. Chin and Dr. Joshi who have always given us a smile, words of encouragement and valuable information
Harold who provided us with whatever we needed in the ICU
Shelia in the pharmacy who always had the medicine we needed when we needed it with a smile and time for a chat
Sharon who is fabulous at taking Madeline's blood and calms her every time with her magic sparkley bandaids
Irma who provided Madeline meals in the hospital and stopped to pray with us at so many crucial times
Debbie, Susan and Alicia (Dr. Joel's nurses) who have answered all my crazy questions and still return my calls!
I know this is just a scattering of all the people at Le Bonheur who have helped us and helped the 130,000 children who enter Le Bonheur each year. When I think back to those frantic days with all our fears, ridiculous questions and requests, and our struggles to understand, all I can remember is receiving only patience, a hug, a touch, and time ... time to explain, time to help, time to hold. They gave us their time, and giving their time (as we all know) meant giving themselves.
Their gifts gave us the knowledge we needed to care for Madeline, the confidence that we could do it, and support when we thought we couldn't. For them we are so grateful.
Over the past year, we have met more of the Le Bonheur Family who we feel like we've known forever: Molly, Jennifer, Meri, Janet, Maureen, Kavanaugh, Erin, Jane, Caryline, Kristen, Bob, Jan, Katherine, Kini, Amanda, Nellann, Liz, Tracy and so many others. The people of Le Bonheur care beyond the days and weeks of admission and the brick walls of the campus. It is the building of relationships that ensures the best quality of care for our children, and that appears to be a prerequisite to employment at Le Bonheur Children's.
Thu, 6/11/2009 8:52 AM
One of the best ways we've been able to give back to Le Bonheur is by serving on the Family Partner's Council. Along with several other parents, hospital president Meri Armour, and Family Centered Care Director Janet Phillips, the council aims to offer advice on issues such as coordinating care for children with multiple specialists, advocating for children in the political system, and improving the quality of care and support received at Le Bonheur.
We have met an amazing group of people on the council. At each meeting, one partner shares his or her family's story. Every story is so touching and inspiring. We feel such hope when hearing about a child who has overcome what must have felt like insurmountable obstacles. We cry with each other as another parent with teary eyes and a lump in her throat shares the story of a son who did not survive his obstacles. Sharing our stories helps us know each other and helps us know how to use our experiences to help other children. Some families struggle with having several doctors who may not always communicate with each other. Others share concerns about access and rights in the public schools for children with special needs. We are a support for each other and a wonderful network of knowledge.
Since the council's conception, the hospital administration has implemented some changes: kids are put on their home medicine schedule (if one already exists) instead of a schedule that may be more convenient for the staff; when nurses change shifts, they discuss the care needed for the child right in front of the patient and family to ensure everyone knows what is coming next, and doors are encouraged to stay open (if families prefer) to diminish those feelings of isolation and foster an atmosphere of cooperation and family. There have also been a number of design features for the new hospital that are solely the result of parent input. The fact that families are even consulted is amazing and empowering; and for that, we thank Meri and Janet -- you are so special and such crusaders for our kids. I could go on and on about them both - wow, we are so lucky to have them in our corner helping our kids!
Through this council, we have been able to nurture our excitement about advocating for children's healthcare issues. Last April, we traveled to Nashville to speak with state lawmakers, and we are ecstatic about visiting our nation's capital next week! Thank you for following along with us!
Oh, by the way, if you want to help make a difference by advocating for kids yourself, just log on to Speak Now for Kids. It's a website collecting opinions of REAL people to pass on to our legislators!!!!! It's easy and only takes a few seconds!
The First Six Months
Tue, 6/09/2009 8:53 PM
Doctors soon discovered Madeline suffered from four congenital heart defects: a hole in her heart (ASD), an arrhythmia problem (WPW Syndrome), high pressure in her lungs (pulmonary hypertension) and a tight valve (mitral valve stenosis). Madeline had open heart surgery ten days after our ambulance ride to the ER to repair the hole and was given medications to treat her other conditions.
Her cardiologist, Dr. Joel Lutterman, maintained close contact with us and advised us to come back to the hospital when she showed symptoms that something was not right. Four weeks after heart surgery, Madeline had a heart catheterization to modify the Gore-tex patch that was placed over the hole.
As a 10 month old learning the art of eating, enduring three intubations and medication six times a day did not help. She developed a feeding disorder (conditioned dysphagia) and essentially stopped eating. In June of 2006, Madeline underwent surgery at Le Bonheur to place a feeding tube in her stomach that would supply her nourishment while she learned to eat again. Special Kids and Families, Inc. (an early intervention service provider) introduced Madeline to feeding therapy through a twelve week program. When Madeline needed further intervention, Le Bonheur Early Intervention and Development provided individual and group feeding therapy for the next two years that eventually led Madeline to eat on her own. In October, 2006, we traveled to Boston Children's where Madeline, then 17 months old, had a heart catheterization to balloon open her tight valve. Dr. James Lock conducted the procedure.
Thankfully, Madeline had her feeding tube removed in December, 2007, and then needed surgery at Le Bonheur to close the hole in her stomach in February, 2008. Whew!!!!
The first six months were full with frequent check ups at the hospital and a few hospitalizations. Fortunately, Madeline is doing very well now. She loves to visit "Our Le Bonheur" as she calls it, for regular check-ups and occasions like Doctor's Day, Nurse's Day, Congenital Heart Disease Week, the Topping Out Ceremony (to commemorate the highest beam being placed on our new hospital, visiting other kids in the hospital, and any other opportunity to give her caregivers hugs and kisses!
Meet Madeline and Our Family
Mon, 6/08/2009 8:40 PM
We are very excited about our upcoming trip to Washington, D.C. for the National Association of Children's Hospital's Family Advocacy Day. We will travel with Maureen O'Connor, Le Bonheur's public policy director, and Jennifer Parris in the marketing department. We will speak with our national legislators about children's health care and meet kids from all over the country representing other children's hospitals. Le Bonheur has a very special place in our hearts as the people there saved Madeline's life several times. It is our goal to impress upon our legislators the exceptional care received at children's hospitals, how thankful we are for the funding and other support they have given in the past, and our dependence on their support in the future.
Join us as we take on D.C. in just one week!
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