DAY 1 Arielle Hope joined our family on Monday, May 29, 2017. Although she arrived a week early, she weighed in at a healthy 6lb., 14.6oz. and measured 19.25". She's a keeper! Two of her big sisters were present for the delivery and helped cheer mom on for labor day on Memorial Day.
Shortly after delivery, the medical team began to administer some oxygen to Arielle to help her "pink up." They grew more concerned as it took quite awhile to clear up her lovely lavender newborn shade. The pediatric nurse practitioner examined little Arielle more closely and then allowed some time for big sisters and big brother to come into the room to coo over their little sister and take turns holding her. After giving us some time as a family, she asked to speak with Heidi and I.
Beyond her beautiful strawberry-blond hair, extra-long baby fingernails, and silky-soft baby skin, Arielle has several physical features common to babies who have an extra chromosome. The back of her neck is a little extra pudgy. Her general muscle tone is a little extra floppy and snuggly. Her eyes have a distinctive shape to them. She has a creased line running all the way across the palm of both hands. These are all features common in infants with Down syndrome.
A flood of emotions hit us with this unexpected news. Uncertainty--what would this diagnosis mean for Arielle's future? Confusion--wait, is this an official diagnosis or do we need genetics test results back in a few days to know for sure? Hope--the Creator God knit together every fiber of her being, knew every moment of her life before she breathed her first breath, and chose to give her as a gift to our family to teach us more about His love. Joy--we have known people with Down syndrome to be the most gracious, loving, hope-filled people around!
DAY 2 Our immediate concern was Arielle's oxygen levels. She spent the night in the NICU for some extra oxygen and monitoring. She was very sleepy and not very interested in nursing. She received additional donated breast milk via a tiny feeding tube running through her beautiful little nostril and into her tummy. Around midday, she underwent an echocardiogram to examine her heart. We later met with the pediatric cardiologist for more news about our little girl.
The news hit us hard. We learned that Arielle has two congenital heart defects. The first is complete atrioventricular septal defect (AVSD). This condition is most common in infants with Down syndrome. About 15-20 percent of newborns with Down syndrome have an AVSD. Basically, Arielle has some missing parts in the middle of her heart. Rather than the usual two valves regulating blood flow between each ventricle and atrium, Arielle has one valve between the bottom and top of her heart. This allows the "blue" (non-oxygenated) blood to mix with the "red" blood. This is inefficient because the blood which has already been oxygenated can re-circulate to the lungs. Arielle's second congenital heart disease is called tetralogy of Fallot. The pulmonary artery in her heart is too narrow and has some extra muscle tissue beneath it. In the short term, this may work to her advantage--counter-balancing some of the effects of her AVSD.
The bad news is that Arielle will need open-heart surgery in around 4- to 6-months. The good news is that Arielle's heavenly Father is the Creator who knows her needs and brought our family to a major metropolitan area with access to an excellent pediatric cardiologist. As frightening as it is to think of our little girl undergoing heart surgery, we were thankful to learn that surgery is very effective at correcting these conditions and the survival rate for this procedure is around 97 percent.
DAY 3 Arielle is doing great this morning! She is breathing thin Denver air without any extra oxygen and doing well with her oxygen saturation levels! She is more alert and more interested in nursing. We're praying that she continues to make good daily progress with breathing and eating on her own so we can bring her home for lots of snuggles, love, and fattening up as she prepares for her heart surgery in a few months.
Thank you to all of our family, friends, and church families in MN and CO for your outpouring of love and support for Arielle. We'll post updates on CaringBridge to keep you in the loop so you can be praying more specifically.