A Blessed Down Syndrome Family
Ashley Kraus is the proud and lucky mama to Miss Josephine, “Joey”. Like most 17 month olds, Joey is big into alligator rolls on the changing table, dancing to music and climbing her big brother, Tanner. She also much prefers to chew on socks than wear them on her feet! Ashley finds herself wondering and laughing at how she will resolve this considering winter is around the corner. Joey’s infectious and coy little smile is contagious and attracts attention everywhere we go!
“Let’s be honest, most little ones in this stage are a handful, and Joey definitely is, but she has this ability to turn on the charm and just make everything worth it with her enthusiastic smile.”
A Down Syndrome Diagnosis
Ashley knows that most of what she has shared sounds pretty typical for a toddler her age. Except Joey isn’t really considered typical at all, at least by medical and societal standards. Joey was “diagnosed” with Down Syndrome when Ashley was about 14 weeks pregnant. Ashley puts the word diagnosed in quotes because she had a blood test done that gives results that are 99.9% accurate.
Ashley’s team of doctors were very intentional about saying they were proceeding as though she has Down Syndrome, but they will not know until she is born. She could have opted for a more invasive test to determine the diagnosis; after much thought she declined. Ashley was assigned a maternal fetal medicine doctor and had regular ultrasounds during her pregnancy to closely watch Joey’s development. Babies with Down Syndrome are more likely to have certain medical complications, such as heart defects. Thankfully, the doctors felt like Joey was developing well and the plan was for Ashley to be induced at 39 weeks gestation. Doctors try to avoid having a baby with a high probability of having Trisomy 21 deliver after 39 weeks, because the chances of stillbirth can increase.
A Baby is Born
An Extended NICU Stay
Over the next few hours, they tried to feed Joey by bottle, but she wasn’t eating like the medical staff hoped she would. Before Ashley knew it, the nurse came in and said, “We are moving Joey upstairs to the Special Care Nursery.” The funny thing is they were planning to take her home later that evening. How quickly things change.
Once Ashley and Chris went up to see her, they soon learned that you will not get a straight answer to the question, “how long do you think she will be here?”. They received a range of a few days to a few weeks. “It all depends on Joey”, they said. At that point the Kraus’ realized they would just have to take things day by day.
The following day Ashley and Chris found out Joey received oxygen overnight and they also placed a feeding tube to ensure she would get the nourishment she needed. No later did they discover that they were to be discharged from the hospital, but Joey was not. This was a shock and hard to comprehend. Never did Ashley think she would be leaving her newborn baby behind at the hospital while she went home two days after giving birth. It was gut wrenching. There was an option to stay at the hospital, but Ashley also had a 2 year old son, Tanner, at home who needed his mama, too. It was decided that Ashley and Chris would go home and visit the hospital during the day to be with Joey until she came home.
A Lovely Surprise
During Joey’s NICU stay, friends of the Kraus’ sent an Audrey & Bear swaddle blanket for Joey. It
was a hit in the NICU! Even though Joey was stuck in the hospital, the blanket provided a
sense of home and was a welcomed change from those hospital blankets! It also sparked great
conversations with hospital staff that Ashley and Chris otherwise wouldn’t have had. Joey’s blanket continues to serve is a constant reminder of the progress she has made.
“Thank you, Audrey & Bear!”
Navigating the Early Days
Nothing could prepare the Kraus’ for the 6 week NICU stay that they were about to endure. Thankfully Joey was healthy, but she was struggling to meet the hospital’s goals for eating and oxygen saturation. Over the next 6 weeks, Joey had many ups and downs. She was off and on a CPAP machine. After 2 weeks, she was transferred to Boston Children’s Hospital so she could get quicker access to test results and more specialized care. Ultimately, it was determined that Joey had severe silent reflux that was causing labored breathing. She needed to be fed past her stomach to prevent any reflux and allow her to comfortably breathe. This required a gastrointestinal tube to be surgically placed into Joey’s stomach. Joey’s surgery was on a Friday and she graduated from the NICU that following Wednesday. She was exactly 6 weeks old.
Ashley notes that, “While it is more common for babies with Down Syndrome to require a NICU stay, it is not always the case. Each baby is different and has their own experience.” After Joey had the feeding tube for a few months, it was time for her to try oral feeds again. It took her a couple of weeks to get the hang of it, but once she did there was no stopping that girl! Joey’s GI doctor would tell Ashley to only give her 2 ounces of breastmilk per bottle and the rest by her feeding tube, but Miss Joey wouldn’t settle for her doctor’s recommendations. She busted past them and was 100% eating orally by 6 months old. Ashley and Chris were so proud of their big girl. She then took to solids like a champion and hasn’t looked back!
Life Right Now
Now that Joey is almost a year and a half, life looks much different with her. She wants to keep up with her brother and loves attention. But she also is an independent lady and loves to explore! Ashley may not always like to admit it, but there are still daily reminders of her Down syndrome diagnosis. Because of Joey’s lower muscle tone, she is not yet walking and she is not saying any distinct words. Ashley and Chris know Joey will hit these goals when she is ready and according to her own timeline! Joey’s diagnosis does qualify her for Early Intervention services to help her work on these milestones. Currently, Joey is seeing an occupational therapist once a week and a developmental specialist every other week. These services would typically be in person, but are now over Zoom due to of Covid-19.
The biggest challenge the Kraus family has recently faced is Joey’s dietary restrictions and chronic congestion. For now, Joey is eating gluten and dairy free because of suspected intolerances. This is another pretty common issue for children with a Down Syndrome diagnosis. Her chronic congestion also causes some sleep disruptions here and there. Of course, if she is sick, this gets magnified. If it is bad, she will wake up crying from discomfort.
“Overall, Joey is a really healthy girl. She enjoys life to the fullest and brings joy to anyone who meets her. We genuinely feel blessed to be her parents. “
What Does the Future Hold?
As a high school student, Ashley worked with a man with Down Syndrome at the local grocery store. He made such an impact on Ashley, that she wrote her junior statement about him. The paper is in her mom’s attic in a box somewhere. Cue the waterworks when she does find it and reads it all these years later.
“I can only hope that our Joey positively impacts someone’s heart in a similar way one day.”
There are many days where Ashley and Chris pinch themselves when they look at Joey and thank God for her. Receiving a diagnosis of any kind for your child can be shocking and scary. It certainly was for the Kraus’. But Ashley’s experience with her coworker back in high school really helped her to cope and have hope for Joey’s life. Can we say that “everything happens for a reason?”.
Advice for Down Syndrome Parents
Ashley and Chris are incredibly thankful that there are many resources available, specifically focused on kids with Down Syndrome. The Kraus’ would encourage any family that receives a Down Syndrome diagnosis for their child either prenatally or at birth, that “you can do this” and “these kids are so worth it.” Ashley mentions that there are definitely some additional challenges medically and developmentally, but you take one day at a time and enjoy every moment your child makes you proud, while showing so much love through it all. The Kraus family looks forward to learning more about Down Syndrome as their journey continues and growing together alongside their sweet daughter, Joey, and their son, Tanner. Life is good! There’s “nothing down about it.”
Raising awareness for Down Syndrome
Here are some ways you can help raise awareness about Down Syndrome:
- Share stories and photos on social media
- Join online support/advocacy groups for DS
- Reach out to your local library about featuring DS books during the month
- Sign up for a local race/virtual race for DS
- Reach out to your local school district about celebrating DS awareness month
- Encourage your workplace to celebrate DS awareness month
- Make a donation to a DS charity/organization
- Wear blue and yellow to show your support for DS
- Organize your own event, fundraiser, etc. to raise money and awareness for DS
“When you judge someone based on their diagnosis you miss out on their abilities, beauty and uniqueness.” – Sevenly
October is Down Syndrome Awareness Month
Every year during the month of October we recognize and honor those with Down Syndrome and their families. This year Audrey & Bear has launched a Down Syndrome Awareness design to help raise awareness. Our hope is that the design will be meaningful to those that have family members or friends with Down Syndrome and provide the groundwork for people to tell their story while creating a memorable “bearloom” for years to come.
The Inspiration Behind Nothing Down About It
Audrey & Bear believes that everyone has a reason to be proud of who they are and celebrate their unique qualities. Much like a butterfly, a person with Down Syndrome brings so much joy into the world- and we are extremely humbled to honor the spirit one extra chromosome creates!
Our latest design, Nothing Down About It, captures the spirit of a beautiful butterfly in meaningful colors. Butterflies are not only symbols of hope, but of change- and we hope this design aids in the change of perception of those generous, thoughtful, lively people with Down Syndrome. Imagine spreading your wings, soaring high and hoping for a bright future.
As with any of our Audrey & Bear designs, Nothing Down About It can be customized so that it’s absolutely perfect for the recipient.
It is our hope that Nothing Down About It brings joy to you and those who are differently-abled in a very special way.
Joy and Smile for All