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Kisses for Kaylee

Our daughter Kaylee Lewandowski was prenatally diagnosed with a rare and life threatening heart defect known as Transposition of the Great Arteries (TGA). TGA occurs when the two main arteries going out of the heart – the pulmonary artery and aorta – are switched in position or “transposed.” Kaylee was also born with a less serious and more common defect known as an Atrial Septal Defect (ASD). In order to correct her TGA, she would need to undergo open heart surgery. Kaylee received the arterial switch surgery, a nine hour procedure, when she was just 7 days old.

Updates (6)

July 6, 2019

Hello! Sorry it’s been so long since we’ve updated this, but we’ve been having so much fun watching Kaylee grow up. It’s hard to believe, but she’s now 4 years old. We celebrated her birthday with a family party with Keith’s parents, and then a larger one with extended family. Kaylee enjoyed pizza, fried chicken and of course, CAKE!

Kaylee amazes us all the time. She started reading several months before turning 4. She asks great questions, likes dance parties, being silly and being tickled. She’s a great big sister to Jordyn, our 9 month old heart healthy daughter.

We’re most happy to report that Kaylee hasn’t had any issues with her heart. She gets an echocardiogram once a year, and her blood pressure has remained in check too. She finally got off her last medication, Captopril, which she probably grew out of years ago anyway.

We are grateful for each day with Kaylee. She teaches us about ourselves as we raise her, in turn making us better people. She reminds us that life is fragile and precious. Thank you to everyone for your support — it is something we will always treasure and never forget.

December 28, 2015

Hi Everyone,

We apologize that it has been awhile since our last update. We have been busy with doctor appointments and spending quality time with Ms. Kaylee. She has been doing well and has made some nice progress in several areas.

Kaylee has been going to speech therapy weekly and physical therapy bi-weekly for the past few months. She’s now sitting up on her own, tolerating tummy time for longer periods and recognizes her name when we call her. She is not crawling yet, but is definitely close. She’s become highly skilled at picking up and throwing her toys around, which gives us more exercise, but it’s a good sign her motor skills are developing.

We’ve been working hard with speech therapy. Kaylee does not take anything by bottle and probably will end up bypassing it entirely. The biggest change we made was gradually speeding up her feed rate from 1.5 hours to just under one hour. This has led to her being more hungry and taking more pureed food by mouth. Her GI doctor also approved us cutting out her midnight and 3am feed as well as increasing her Zantac since she had grown out of her old dose.

Kaylee also had the Ear, Nose and Throat (ENT) doctor perform a scope in November. It showed her vocal chords are intact and not paralyzed as we had initially feared. During this same scope, Kaylee’s speech therapist attended and had her swallow 5-10 mL of green colored milk as part of a Fiber optic Endoscopic Evaluation of Swallowing (FEES) study. The study showed Kaylee is not aspirating (fluid going into lungs), which was great news to hear.

There has been discussion over a Gastric tube (G-tube) for Kaylee, but it’s more for convenience than medical necessity. Since it involves another surgery, we are opposed to it and have let Kaylee’s doctors know. What we have learned is there is a wonderful community on Facebook for parents in weaning the tube. In order to get Kaylee to take more by mouth, we need to get her hungrier. We plan on cutting out more feeds in the future after we meet with the GI doctor in a few weeks. One expert who has helped many families said a 50% cut from the NG feeds is necessary to induce enough hunger. That said, we anticipate some minor weight loss, but have been told that is normal.

Speaking of weight gain, Kaylee has been doing great. She’s over 15 lbs. and into the 20th percentile! That is pretty remarkable considering she wasn’t even on the growth curve a few months ago. Kaylee’s blood pressure has remained higher than normal, so the kidney doctor increased her dose from 0.1 to 0.2 mL in November. Her Sildenafil for her pulmonary hypertension remains at 0.2 mL four times per day. Our hope is that she will not need it anymore after her follow up with the Pulmonary Hypertension team in February.

It has been really nice to watch Kaylee grow and develop these past few months. She is such a joy and such a happy baby. We are optimistic that she will be off the Sildenafil and most importantly, get the NG tube out within the next few months. She has become an expert in pulling it out and we have to watch her like a hawk.

Keith’s parents have been a huge help as well giving us breaks, cooking meals and going to appointments with Kaylee and I. As well as my parents and aunts who visit weekly to help out and enjoy extra snuggles with Kaylee. Additionally, we wanted to thank you all for all the support, thoughts, prayers, and kind gifts. We do not know what we would do without family and friends like you.

We send our warmest wishes and hope the holidays were special. As we continue to celebrate with the new year, please keep those in mind that have passed and their families. You are always in our thoughts and prayers.

With Love,

Keith, Julianne and Kaylee

Here are a few videos of Kaylee. Enjoy!

Kaylee balancing at physical therapy
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Kaylee the jumping bean
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Kaylee laughing with Nana
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Guestbook

October 3, 2015

I have a man-crush on Keith and I also get to babysit first, before Jeanne. You guys are in my thoughts.

Scot

September 10, 2015

What a beautiful and high spirited girl! I'd expect nothing less with such great parents.

- Mike W.

September 5, 2015

Always in our thoughts and prayers Kaylee.... Anaissa and Andrew

Anaissa

August 30, 2015

Hugs and kisses to you Kaylee.. Our thoughts and prayers Keith and Julianne.Praying for all of you. Stay strong and faithful. Hope to meet one day Kaylee

Tracy, Bambi , Ellen, Kayla and Logan