I look back to this day and I'm still 'taken back' by the phone call. This was a phone call that every parent, every mom, prays to never receive. It was Dr. Everitt; I was excited that she was calling. It never crossed my mind that she might be calling for a reason. I definitely wasn't expecting the news she was about to tell me.
To back up a little bit, Madison had just seen Dr. Everitt the day before (October 7). It was a routine appointment with the typical tests administered (Echo, EKG, blood work). Overall, our appointment went well. There was one small red flag... Madison still wasn't gaining weight. This did worry Dr. Everitt, but we both concluded that things were going well. Madison wasn't showing any other major 'heart failure symptoms'. Dr. Everitt said she didn't need to see Madison until December. I was thrilled... December! Really? This was going to be the longest time between appointments we had ever gone.
The next morning I received 'the phone call' from Dr. Everitt. She explained to me that Madison's 'heart failure symptom' of not gaining weight was nagging at her. She had a feeling that something more might be going on with Madison's heart. So, upon coming to work, Dr. Everitt took some time to study Madison's echos. Instead of comparing each echo from month to month, she decided to only look at her current echo (the one she had on October 7) and compare it to an echo in March. She then explained to me that when looking at the echos with an 8 month gap between them, it was obvious there had been a dramatic decrease in her heart function. Her heart is working too hard and her valves have started to leak. As I cried, Dr. Everitt kept saying, "I'm so sorry to have to tell this to you over the phone." She then informed me that it was time to list Madison for a heart transplant.
Dr. Everitt and I continued talking for about 20 minutes. Actually, I think I just cried and she talked. I remember asking Dr. Everitt if she had the right patient. I know that sounds silly to ask, but Madison looks so good. I understand that she has a heart problem, but is it bad enough for a transplant? The answer is yes. Dr. Everitt reviewed the 'heart failure symptoms' that Madison is currently showing..
1. Slow (very slow) weight gain.
2. Overall development is slower than an infant/toddler her age.
3. Madison experiences moments of sweating. (I think these are moments when her little heart is working too hard, or is tired..)
4. Overall size of her heart is too big and is putting pressure on her lungs. (X-rays will be taken often to ensure there isn't any fluid build up in the lungs or around her heart.)
Dr. Everitt explained to me that her symptoms could get worse and there are other symptoms we should watch for. Her condition will definitely worsen if she gets sick. We then made an appointment to meet with the Heart Transplant team for October 15 at 10:30am.
Following my phone call with Dr. Everitt, my emotions became stronger as I now needed to call Mark to inform him of the news. Mark ended up coming home early from work. We sat on living room floor and played with our kiddos. Emotions ran high as we both found ourselves crying off and on that day. We had just received the worst news ever and have no idea what's ahead. We are so scared, but will do whatever we need to for our little girl. The cute part of the story was that Madison was so happy; she had no idea what had just happened.
October 8 was also our 10-year wedding anniversary. Happy Anniversary, Mark. I love you. (we can do this..)
4 weeks ago