presenting our 11th warrior, Kelsey!

There is just something extra amazing about this little girl. I met her mom, Jessica, through The Queen’s Facebook page not so long ago. But this is one of those connections, one of those families, where I wish I had made the connection a long time ago. Kelsey and Natalie have a whole lot in common and we can only appreciate it. From their defects to time spent post-op with their Glenn procedures to Kelsey having the same birth date as Natalie’s grandma..I’m telling you..it’s kismet. It’s completely awesome. Here is Kelsey’s courageous “heart story” as told by her mommy, Jessica:

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“Kelsey was born November 11th, 2006. She was a whopping 8 lb 2 oz and 21 inches long. She was PERFECT. My whole pregnancy Kelsey was said to be a healthy thriving baby, which couldn’t have made me happier. But at 3 days old we noticed she was turning blue around her mouth a lot. We hadn’t yet been discharged from the hospital. The pediatrician came in to talk to me and said he was going to run some tests, but he was pretty sure it was a heart murmur and definitely heart related. She was air lifted to a hospital 30 minutes away that was more capable of caring for her. Once I arrived and spoke with the pediatric cardiologist it was determined that Kelsey had Tricuspid Atresia. She would need a series of operations to survive. Her heart and lungs were amazingly strong and we were able to forgo the first of three operations.

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At one of what would be many cardiology appointments, her cardiologist told me she would need an operation once she started showing signs of lower oxygen saturation. He was right. One night after dinner I sat down to feed and change Kelsey. It was hard to wake her up. So I changed her diaper, thinking maybe she was just really tired. She woke up once she was changed, but she didn’t want her bottle. She wasn’t very lively at all. So I made the decision to take her to our emergency room. Her pulse ox was the first test and it was enough for them to say that she needed to be taken back to the Children’s Hospital. Her o2’s were in the low 60’s and she was still lethargic. We were transported via ambulance and at 3 months old Kelsey had her Glenn open heart procedure. She was such a champ. We went in on February 9th and came home on February 13th. She did so well and continued to thrive and grow for many years.

It was right before Christmas of 2009 when we noticed that Kelsey was having a hard time tolerating a lot of activity. She was now 3 years old, but was not able to keep up and run around due to her fatigue, shortness of breath, and turning blue again. We consulted with her pediatric cardiologist on the matter, he suggested a trip to the cardiac cath lab to check her pressures and if she was ready for the next surgery, the Fontan. Her pressures were great, everything was a go for the Fontan. We opted to wait until after the holidays for her surgery. It was scheduled on January 20th of 2010.

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She came through surgery well, but due to scar tissue she had developed an arrhythmia. The Dr’s assured me that it would either go away on its own, or it would be controlled with drugs and a pacemaker. I was in such denial and grief. I didn’t want her to have a pacemaker. At all. I prayed against it, I wished it away, but nothing was stopping it. On January 27th, exactly a week later, Kelsey woke up at 5 a.m. with really bad arrhythmia’s. To the point of her whole face turning blue and her holding my hand as I brushed her hair back off of her face with my hand. She was miserable and it was getting worse. Once she was stable, I excused myself. The nurse told me she needed her rest more than anything. I stayed close by her room, but not in it. I let her rest most of the day.

That evening my mother and I went down to the hospital cafeteria to have dinner. I wasn’t in a mood to eat, but I tried nonetheless. Until I received a call from her nurse. Kelsey had flat lined for 10 seconds and although her heart had started back again by itself, it was for the best if she had a pacemaker immediately. So at 7:30 that night I signed a bunch of papers for her to have the surgery. I was told that it was a high risk surgery because Kelsey had been on so many drugs in the past week that when combined with anesthesia it could become lethal to her. I was scared, nervous, and so worried. I have never in all my life cried as much as I did that night as I awaited for her to come out of surgery.

Surgical waiting rooms are never fun. The one I was in, was worse. It was a pretty good-sized room, with one wall lined with phones. Nurses and techs would call to let families know how surgery was going. They were rotary style phones, the kind with a ring that was sure to send a chill up your spine. I waited through what seemed like a hundred rings before I picked one up. It was a man named Henry calling to let me know how she was doing. He was the pacemaker tech. He told me she was doing great, that she sailed right through the surgery and they were closing her as we spoke. I thanked him thousands of times and even asked again if she was okay before hanging up the phone.

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Kelsey is now 3 years post op all of her operations.

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Being such a big kid at her many heart checkups!

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Who put those there?

She is doing remarkably well, although we are still battling arrhythmias. She has had a cardiac ablation, a cardiovert, and numerous drugs poured into her body to fight them off, but she still remains strong and resilient. She is the greatest blessing. Oh, and we got to meet Henry at our clinic appointment not long after she was able to go home. He was just as kind then as he was when he called us. He wasn’t afraid to show Kelsey how proud he was of her and how amazed he was at how far she had come.

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Kelsey with her little brother : )

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A fighter who’s kicking CHD’s booty.

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She is in Girl Scouts, and this spring she is going to play Tee Ball. My girl is a fighter. And I am so blessed that she is mine.”

What a fighter!!

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