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At just 21 weeks along, Kayla and Craig went in for an ultrasound for what they thought was just a second ultrasound to get more pictures of their precious little baby. It was at that moment that they were informed that their baby, beautiful Willow, was diagnosed with a left ventricle- aortic tunnel (LVAT). To follow, was many continual doctors appointments and ultrasounds to make sure Willow was developing well and no complications occurred from her congenital heart defect.
On 8/16/21 at 9:16 pm (4 weeks premature) Willow couldn’t wait any longer to join us in this world and meet mommy and daddy. From that point, at just 5lbs 2oz, Willow has shown us just how strong of a heart warrior she really is! This strong, amazing, resilient little girl went through blood draws, CT scans, IVs, feeding tubes, many medical tests, blood transfusions, breathing tubes and much more, taking it all like a champ.
On August 31st we faced a very fearful day. Doctors had begun to notice a change in Willow’s heart rhythms. They moved up her cardiac catheterization procedure for further images of her little heart. Willow’s heart did not take this procedure very well. Her heart arrested and she needed CPR and two Defibrillation shocks to come back, followed by a blood transfusion.
On September 1, 2021 Willow received her open heart surgery for her congenital heart defect. After the five- hour procedure, Willow showed us the true meaning of her name; Graceful, persistent, flexible, hopeful. The procedure went wonderfully and the doctors were very optimistic with the results. After a week and a half, on September 10, Willow was now off the ECMO machine, Chest was closed, chest tubes and catheters were removed and breathing tube was removed.
On September 16, 2021, we learned that our sweet Willow needed more time to learn to eat safely through her mouth so for the time being Willow has a feeding tube in her stomach while she continues to grow, heal and develop.
Just as this new little family was getting close to being able to go home together, they got some sad news. Willow had developed pericardial effusion, which is fluid that started to build up around her heart. The cause of this is not clear but on September 28, 2021, at just six weeks old, Willow went in for her fifth procedure to have the fluid removed from around her heart. The procedure was successful and Willow is continuing to heal and is stronger every day.
This family is surrounded by so much love, friendship and kindness and they just can’t wait for the day that they can go home and spend time together as a family outside of Children’s Hospital.
Our sweet Willow Charlene shows us every day how strong she is and we are so lucky to have her in our lives. All money raised will go towards Willow’s current and continual medical expenses. As Kayla and Craig are prepared to take on these expenses, many people have asked how they can help. Any amount of donation is greatly appreciated as well as your thoughts and continual prayers for this family we love so much.
Please share Willow's story, so others can give their love, prayers and support.
On 8/16/21 at 9:16 pm (4 weeks premature) Willow couldn’t wait any longer to join us in this world and meet mommy and daddy. From that point, at just 5lbs 2oz, Willow has shown us just how strong of a heart warrior she really is! This strong, amazing, resilient little girl went through blood draws, CT scans, IVs, feeding tubes, many medical tests, blood transfusions, breathing tubes and much more, taking it all like a champ.
On August 31st we faced a very fearful day. Doctors had begun to notice a change in Willow’s heart rhythms. They moved up her cardiac catheterization procedure for further images of her little heart. Willow’s heart did not take this procedure very well. Her heart arrested and she needed CPR and two Defibrillation shocks to come back, followed by a blood transfusion.
On September 1, 2021 Willow received her open heart surgery for her congenital heart defect. After the five- hour procedure, Willow showed us the true meaning of her name; Graceful, persistent, flexible, hopeful. The procedure went wonderfully and the doctors were very optimistic with the results. After a week and a half, on September 10, Willow was now off the ECMO machine, Chest was closed, chest tubes and catheters were removed and breathing tube was removed.
On September 16, 2021, we learned that our sweet Willow needed more time to learn to eat safely through her mouth so for the time being Willow has a feeding tube in her stomach while she continues to grow, heal and develop.
Just as this new little family was getting close to being able to go home together, they got some sad news. Willow had developed pericardial effusion, which is fluid that started to build up around her heart. The cause of this is not clear but on September 28, 2021, at just six weeks old, Willow went in for her fifth procedure to have the fluid removed from around her heart. The procedure was successful and Willow is continuing to heal and is stronger every day.
This family is surrounded by so much love, friendship and kindness and they just can’t wait for the day that they can go home and spend time together as a family outside of Children’s Hospital.
Our sweet Willow Charlene shows us every day how strong she is and we are so lucky to have her in our lives. All money raised will go towards Willow’s current and continual medical expenses. As Kayla and Craig are prepared to take on these expenses, many people have asked how they can help. Any amount of donation is greatly appreciated as well as your thoughts and continual prayers for this family we love so much.
Please share Willow's story, so others can give their love, prayers and support.
Organizer and beneficiary
Kayla Diegnau
Beneficiary