A couple months ago, I received a phone call from Primary Children's. As any heart mom would tell you, we usually don't love these phone calls. As I just starred at their name on my caller ID, I froze and started to panic. I wasn't expecting any phone call and instantly wondered if everything was ok. ... Nonetheless, this was a fun phone call! I was being notified that Madison had been chosen to receive a wish from MAKE A WISH. The purpose of their phone call was to get my permission for Madison to receive any wish of her choice. And of course, I said, "YES!"
Following my phone call from Primary Children's, I received a phone call from Make A Wish. It was our first Wish Granter's (Paul and Sarah), calling to introduce themselves and schedule a time to come meet Maddie and Cooper. I remember this phone call because I couldn't talk. I was just having one of those mommy moments where I found myself overcome with emotion and so grateful for this opportunity. (those moments seem to happen so frequently...) Paul and Sarah came to our home and spent an evening playing with Maddie and Cooper. We had a great time! The purpose of their visit was to try and figure out what Maddie might wish for...
A few weeks went by, Paul and Sarah moved away and we met our second Wish Granter (Coral). Coral invited us to come to the Wishing Place in Salt Lake. At the Wishing Place, Maddie would be able to go to the Wishing Room and make her wish. A key to the Wishing Room was mailed to Madison.
Madison holding her key. (only those with keys can enter the Wishing Room)
The entire Wishing Place was decorated just for her.
After much discussion and excitement, Madison made her wish. We helped her write it on a piece of paper and then sealed it tight in a capsule. Everyone then followed Madison into the Wishing Room.
The wishing room was magical and sparkled with many colors. There was beautiful music playing inside. It's hard to see in the picture, but that's a water fall behind the cylinder. While in the wishing room, we all took the time to read our wishes to Madison. At this point everyone was pretty emotional. This wasn't the time to wish for fun stuff; it was a time to reflect on what Madison has been through and what we wished for her future to hold.
When it was time, Madison took the top off the cylinder and placed her heavy capsule inside. Then we put the lid back on the cylinder. Her wish was immediately sent to the Wishing Wizard. We waited for only a few seconds for a response from the Wishing Wizard. The room then became really bright, shiny and sparkly. Thismeant that her wish was granted...
Sometime around June 1, this will be arriving at our house...
So... if you think I'm naughty at Christmas time, then I was naughty here too. I marched myself over to Backyard Adventures to see exactly what this looks like. IT IS HUGE! Mark measured and this new toy will take up our entire backyard. We are so excited, especially Cooper and Maddie.
When I titled Maddie's blog, "They Journey of My Heart Transplant", I never thought I would be blogging about the overwhelming, life - changing experiences that we would have the opportunity to go through. I have witnessed so much good and met so many good people as I've traveled through this journey with Maddie. Often the feelings of gratitude are so overwhelming; it's hard to find the perfect words to explain our perfect journey thus far.
A very special thank you to our medical team and Make A Wish. We appreciate you! We love you, Madison loves you!
Yesterday (Friday, April 15) I was notified that a sweet, sweet 12 year old girl also named Maddy has chosen to sponsor Madison's wish. Maddy is having a bake sale TODAY from 2-4pm at the Lone Peak Park (10140 S. 700 E.) in Sandy. All proceeds will go to Make A Wish for Madison Hiles' wish. Thank you Maddy! We're coming by to meet you...
I know, I know.. I went way too long between blog updates AGAIN. aah! I really wish that I would update more often, but life seems to get so busy and blogging is easily put on the back burner. I have thoroughy missed hearing from everyone as I find it therapeutic to write and exhale those feelings that come with being a heart mom. Your comments always give me the added energy that I seem to need. I absolutely love hearing from everyone.
How about this... I'll start with an update and then promise (to whomever is reading this - or just promise to myself) to write a blog entry everyday this week and then I should be caught up by the end of the week. And at the end of this entry, I'll give you a heads up of what to expect later this week.
So here it goes... my biggest fear (aside from heart failure and transplant) came true. Madison was diagnosed with RSV on Friday, January 28. Is there another word for terrified? Cause I have been absolutely terrified of her getting sick. I think it's because of the unknown. I had no idea how any sickness would affect her, or what I would do if she got sick. I just wish that I could bubble-wrap her beautiful heart in an effort to keep it safe and then double bubble-wrap Madison. Dang it... sometimes it is so hard and so stressful to be a mom to a heart kiddo!
Little did I know... my mama instincts would kick in and I would know exactly what to do when she got sick. During our visit with her pediatrician on Friday, I was warned that her RSV would probably worsen, especially since she was immune-suppressed. I discussed a plan of action with her pedicatrician and returned home with breathing treatments and an antibiotic for her ear infection. (oh, Cooper also had 2 ear infections, but tested negative for RSV) We returned for a follow up visit on Monday, which Madison actually looked better. I'm still laughing cause she managed to look better only for her appointment. By the time we got home, she wasn't looking so good anymore.
On Tuesday, February 1, Madison was admitted to Primary Children's for RSV and an extremely high Prograf level. Prograf is one of Madison's heart medications. It is an extremely sensitive drug that can easily fluctuate. Dramatic fluctations in Prograf can cause a person to have severe headaches, lethargic, stomach aches and even cause rejection. Upon being admitted, Madison was pale and lethargic. Looking at her reminded me of heart failure again. I found myself being so scared again. She needed some oxygen and fluids. I wasn't prepared for her needing oxgyen as her sats have always been perfect. (even through heart failure) The entire time that I sat in the ER at Primary's I was shaking. I was so scared and wanted someone to reassure me that her heart was ok. I didn't tell anyone how scared I was, but inside I was begging for someone to tell me that her heart was ok. After her chest x-ray, a resident doctor came in her room just to tell me... "mom, her heart looks just fine. It's handling the sickness very well. Now we can focus and treat the RSV." I was so relieved... But how did he know that I was so concerned? I never said anything to him about me being scared and nervous. hmmm.. just another answer to a small prayer. (it happens to me all the time..)
Madison was released on Friday and was so excited to see her brother again. She is still sick and probably will still have RSV for the next couple weeks. She doesn't need oxygen anymore, but we have continued with the breathing treatments twice per day. Because her Prograf level was such a mess, she will have a two blood draws this week. And then once a week until her level comes back to normal.
This is Madison's first sickness since transplant and I can't believe how much does affect her heart.. 1. Dehydration: increases heart rate. 2. Low electrolytes: increases heart rate. 3. Breathing Treatments: increases heart rate. 4. Low electrolytes: increase Prograf 5. Any change in electrolytes: affects Prograf 6. Any change in Prograf: affects the heart. 7. Increased Prograf: affects the kidneys. 8. Her heart can become enlarged due to the stress of being sick. This is enough to make a heart mama go crazy!
"Some people make a list of goals and accomplishments; I seem to have a list of fears. However, once I have conquered a fear.. it feels greater than any goal that I have ever accomplished." Me
More to come... 1. One Year Post Transplant Dinner Celebration. 2. Madison's annual Heart Biopsy. (Cath Lab) 3. Registering for Preschool. 4. A letter.
December 4, 2010:
Madison's Heart Birthday...
Dinner and celebration at Goodwood BBQ in Provo. 6:30pm. Everyone is invited!
December 9, 2010:
Madison's annual heart biopsy.
Miss Madison and her twin brother, Cooper were born June 10, 2008 at the University of Utah Hospital. Madison is diagnosed with Wolfe-Parkinson White Syndrome (abnormal heart arrhythmias) and Hypertrophic Cardiomypathy (heart muscle is too thick). Due to the Hypertophic Cardiomypathy, Madison's heart is unable to function properly. Currently, her little heart is working too hard resulting in the valves leaking and a few other symptoms. On October 15, 2009 Madison was listed for a Heart Transplant. She is listed as a 1B status.
UPDATE: On November 30, 2009, Madison was admitted to the ICU at Primary Children's Hospital for severe heart failure. We had hit our brick wall that Dr. Everitt explained might happen. Madison was pale, lethargic, and throwing up. Her liver was enlarged. It was obvious that we were heading in the wrong direction. Immediately upon being admitted, Milrinone (heart medication administered only through IV) was started. Madison also had to have a J-Tube placed (kind of like a G-Tube, but goes to the intestines rather than her stomach). At this time, Madison's status was changed to a 1A on the Heart Transplant List. On day 4 of being in the ICU, Mark and I were notified that a heart had become available for Madison. Our medical team believed this would be the perfect heart for our little girl. On December 4, 2009, Madison received the most sacred gift; she received her new heart. Thank you to our donor family. We love you.
One day my world came crashing down, I'll never be the same. They told me that my child was sick. I thought, "am I to blame"? I don't think I can handle this. I am really not that strong. It seemed my heart was breaking. I have loved her for so long. I will not give up on this child. I will listen to your advice. I will give my child any chance. No matter what the price. I will learn all that I need to help my child thrive. I'll even use that feeding tube. My child must survive!
Will she need a lot of therapy? Will she gain the needed weight? Please God, help me do this. I will accept our fate.
When the monitors beep at night, it serves as my reminder. How many parents would love that sound. Tomorrow I will be kinder. As another Angel earns his wings, I run to my child's bed. I watch her sleep for quite a while. I bend down and kiss her head. I cry for the parents whose hearts have been broken. I look to You wondering why? Oh Lord, I just can't know your ways....no matter how I try.
And yet, I trust you hold her life, and guide us through each day. My mind says savor each moment she's here, but my heart begs, "PLEASE let her stay"!
From pacing the surgical waiting room, to sitting by her bed. From wishing for a good nights sleep, to learning every med. From wondering, "will she be alright?", to watching her reach out her hands. With every smile my heart just melts, despite life's harsh demands.
For all who see that faded line. I look to them and smile. You see MY child is loved so much. I would face ANY trial. That scar I trace with my finger (It's the door to her beautiful NEW heart). God must have known how much I'd love her (Just as He loved her from the start).
A heart mom is always a heart mom. Now wise beyond her years. For those who have angels in heaven, our hearts share in all of your tears.
Every day I will try and remember, I was chosen for her (and no other). I will always embrace that beautiful day.......When I became a "Heart Mom".