Kaela
A Full Trisomy 18 Angel
This is our daughter, Kaela Anne Grace Stobbe. She was born two days past her official due date on November 28th, 2011. We always say it was her proving a point to all the doctors right from the start that she was NOT incompatible with life and all they said she would be! They didn't think she would make it through the birthing process with all the holes in her heart, but she proved them all wrong! Kaela came out more pink than our first daughter, who had no health issues, and she went home 2 days after being born with zero interventions needed.
She was such an incredible gift to us, and this sweet and sassy girl showed everyone exactly who she "wasn't" ALL the time! She loved going fast in her wheelchair, riding any carnival rides she could, and being launched into the air by Mummy or Daddy during fun playtime! She loved her family dearly, especially her big sister Hannah. She absolutely loved to play with helium balloons and often had one in her hand. She loved pulling on the ribbon to make the balloon dance around so it would bump into her or other things nearby. The sound of the balloon hitting anything would make her break out in a huge belly laugh! Especially when Mummy got involved and would hit the balloon, making the sound louder! The louder the sound, the better! She also loved making music with the bells that hung on her activity center! With these and her music cube, she was a one-woman band. She loved giving hugs to her family. Boy, they were tight ones. Mommy and Hannah often received raspberry kisses (or what we called "zerberts") along with their hugs. When Daddy had shaved, he would get some too. She loved life, her family, and her friends.
Her nicknames were Little Miss Sassy Pants, Our Little Firecracker, and Sweet Cheeks. All for very good reasons. She made what we called her "happy sound" often, and if Mummy came home and didn't run upstairs to see her promptly, she'd hear about it. She'd tell you what for if her dinner was late, but she was equally as fiery in her affection for us! Even in her sassiness, she was always SO happy and completely full of an unimaginable JOY! She had the strength of a warrior, somehow wrapped up in the package of a sweet and super cuddly little princess. Her sweet joy and her huge smiles would truly light up and fill any room that she was in! You couldn't help but fall in love with her. She was the sweetest and most unique little wildflower, and there will never be another like her!
She passed away on January 14th, 2019, at the age of 7, and we will forever miss her, her beautiful sounds, and her bright light! Until we can hold her again in Heaven, we will keep her in our hearts.
Kaela had Full Trisomy 18, 3 ASDs, one large VSD, and Pulmonary Hypertension with Eisenmenger's Syndrome. This made her ineligible for heart surgery. She was on low-dose oxygen via nasal prongs. For the last two years of her life, she could easily go without her oxygen for hours at a time (with no issues) to enjoy different types of fun! (like swimming with Dolphins) Kaela was always up for just about anything! She amazed us!
Kaela could roll over easily, army crawl, sit straight up from lying on her back (best abs and obliques ever! LOL), stand with help, go from sitting to standing only holding her hands, give you the tightest squeezes (hugs) you ever had around your neck and sign multiple things, especially "more"! Kaela could even feed herself bottles safely while Mummy observed, of course. (She would even stop to take breaks for burps!) She fed all orally right from the start! This little firecracker refused n/g tubes multiple times and showed them what she was made of! Her oral feeds ultimately proved to be extremely beneficial in managing any respiratory illnesses. She learned to cough well, etc. They tested her 3 times to confirm that she was actually FULL Trisomy 18 because of SO many things that she did and how she would do with illnesses and other milestones they would see.
Please don't ever let any doctors tell you what your child will or will not be! They told us the same that most of you have heard - our child won't know us, will be a burden, and won't survive - we should give up now, etc. They don't know; they really don't. God truly blessed us with this little girl, and we are forever grateful to Him and for her. From one momma to another, whatever your time with your child or your choice, know you are cared for and loved.
To you all, XOX
Thank you, Alivia, for this opportunity to speak about our children and to have them remembered in such a wonderful way. XO