Rash Trumps Heart

We showed up at the hospital on Sunday morning to check in Little Kate. I was so comforted to find that all of the nurses in the pediatric ward, along with our surgeon, remembered Kate from her first surgery. I know that these amazing folks see hundreds, maybe thousands, of patients and families, so it was really warming to walk into that welcome. We were there just long enough for some initial tests, and for Kate to pull off one of the sensors (let's hear it for her dexterity!), when her surgeon came into the room to see her. He almost instantly noticed a diaper rash on the top of her leg and told me that they couldn't do her surgery because of it. At first, I thought he was kidding, then I realized that a pediatric cardiac surgeon probably never kids. I was stunned. He explained that they would need to have access to that area for an IV, and the rash would carry a risk of infection which could have devastating results. So, that was it. They sent us home.

I am so comforted to know that the surgeon is so thorough and so cautious with Kate (and I'm sure with all of his patients). We are blessed to have Kate's surgery at a good hospital with great doctors. Her new surgery date is August 10. She will go into the hospital the day before for all the preliminary tests. And hopefully, there will be no rash that day.

So for now, she has 2 more weeks to get even stronger and grow a little more. She is so close to sitting up and is really working on crawling, so I'm sure that she will put these next two weeks to good use.

Thanks for keeping her in your thoughts.

H

Heart Surgery

Many of you have been following Kate since before she was born. Others have only just met her. So, first, let me give her history.

At 18 weeks, when she was about the size of a walnut, and her heart was about the size of a small raisin, the doctors told us that she’d be coming into the world with some challenges. This first is that she has Down Syndrome, the second is that she would be born with an AV Canal, essentially a big hole right in the middle of her heart. How they docs could see that was beyond me, but we started getting ready.

At 3 months, Kate had her first surgery. She was too little for a complete repair, but they needed to do something to reduce the pressure on the cardiovascular system to avoid damage to her lungs. They put a band on her pulmonary artery to help reduce the over-circulation of blood, and that has given her time to grow and get strong.

Now, at 9 months old, she goes for her next heart surgery. This one will be far more extensive. They will essentially reconstruct her heart by building the walls of the atria and ventricles, and then splitting her single valve into 2 separate valves. It will take about 7 hours to do all of this. The surgeon that does this is truly an angel walking on earth.

She will be in the hospital for 7-10 days afterwards, and then her full recovery will take about 6 weeks. After that, we hope that her heart will thrive and work like anyone else’s. She’ll grow, and run, and play, and love.

Kate is such an amazing, loving, gentle, funny, and strong little girl. It is impossible not to fall in love with her. I have seen her steal the hearts of strangers with her hypnotic eye contact and a smile that can melt you. She has the most loving little hands and snuggles with anyone who holds her. She is a gift.

To say that it is hard to know that she is having this surgery is the world’s greatest understatement. There are moments when the thought paralyzes me. I can only hope and pray that she is in good hands. But I simply can’t express how scary it is.

We have great support of family and friends. Kate has a great village. Please send her your thoughts, prayers and love.

Much love,

Team Kate

Welcome

Welcome to Kate’s Blog! This is where we’ll write updates regarding Kate’s surgery and recovery. Drop by, read, write a message, send her some love, leave a prayer. I believe it all makes a difference. Thanks for being part of her village. She has so much love from all over the world. She is blessed.