This will be, hands down, my favorite blog post to date. I get to share with you my beautiful niece: Madison Rylee Sullivan (or lovingly called Madi). She's my first one, my only sister's first child, and the first grandbaby and great grandbaby on our side. Needless to say, she is invaluable and exponentially adored by her family. She's only a week old, but already has a slew of nicknames: monkey, monkeybutt, lovebug, little one, turtle, little bean, and every endearing term you can think of. This baby is loved.
I remember the day my sister and her husband told us they were pregnant. It was full of joy, laughter, extreme excitement, and joking that my dad should sit down for a breather after hearing the news. Two families were being tied together by blood with this one little baby. We were so thankful for this new life that the Lord graciously gave us.
As time went by and normal check-ups pursued, an ultrasound revealed something off. Shaking the possible diagnosis and thinking "this wouldn't happen to us," they kept trucking through. After bloodwork and an amnio, the pregnany was redefined: Trisomy 18. The doctor said the chances of it happening to my sister and her husband were like being hit by lighting--and they were struck. I remember exactly where I was when my sister called me on the phone to tell me the diagnosis. We just sat in silence with tears streaking down our faces. "How could this happen?" "What did we do wrong?" "Why has God, the giver of all good things, given us this battle?" These were the questions constantly running through my mind.
So, what is Trisomy 18? Also known as Edward's Syndrome, it is a condition when an error in cell division causes there to be an extra 18th chromosome. Little Madi has full Trisomy 18, meaning every cell in her body is like this. 50% of babies with this, who are carried to term, are stillborn and only 10% of those who survive make it to see their 1st birthday. This extra chromosome causes some major health issues: heart issues, kidney defects, esophageal artesia (meaning the esophagus doesn't connect to the stomach), mental and developmental delays, physical defects etc. Every case of T18 looks different and has different stuggles. Pertaining to Madi, she has some heart issues and esophageal artesia. The latter is currently the bigger issue. Because of this, she has to be layed on her side nonstop, cannot swallow or eat, and has to be watched 24/7, to suction out saliva, so she doesn't choke on it or get it in her lungs. She also cannot eat properly, so a PICC line was put in. Everyday she has to have a new IV bag of nutrients prepared and installed.
With all of the facts about T18 swimming around their brains and suggestions about early termination from their doctors, my sister and her husband made the bravest choice: to see Madi through this pregnany and let God handle her timeline. With one decision, they became the bravest and strongest people I know. They threw their trust at the Lord and prepared for a complete life change.
Fast forward to the day of delivery at the hospital. At the surprise of the doctors, Madi made it full term and even was past her due date, causing my sister to be induced. They wanted to do natural birth, but a few hours into labor, the doctor decided, due to some chord complications, Madi would have a better chance at surviving if a c-section was done. They quickly wheeled my sister out of the room and called her husband into the OR. In a time that felt like ages, yet a blink of an eye at the same time, my sister was wheeled back into the room with the most beautiful baby I have ever seen laying on her chest. Surrounded by 13+ family members, Madi was ooed and awed over. Her little eyes were looking around the room, so alert to everything that was going on.
For the next four days spent in the hospital, Madi had her ups and downs. There were times when we thought we had just moments left with her and times where one little smirk from her would change your life. Because my sister and her husband decided on comfort care, Madi never left their side. We quickly started adjusting to watching her 24/7, with my sister, her husband, and family members rotating in and out. By the complete surprise of the doctors and nurses, she made it to four days old. This is the average lifespan of a baby with T18 and making it to this point was a tremendous victory.
I remember praying to God a few days before Madi was born, begging Him to throw His hail-mary pass already. It's not in the way that I every pictured it, but He was faithful and threw it: she was cleared to go home!! While they wheeled my sister and her precious baby down to the car, the moment was filled with excitement and nervousness. I looked at my sister while the new dad prepared the carseat and she just sat in awe. She shared with me that she never thought this would ever happen; that every time she pictured herself being wheeled to the car, she was empty-handed. I knew in that moment that the Lord had given us this true and perfect gift.
Everyday with Madi comes with challenges. But those are far, far outweighed by the joys she brings us. She is extremely strong-willed and a tough little cookie. You take one look at her and you can see the fullness of God's creation. T18 is deemed by doctors to be "incompatible with life." And each new day, Madi proves that wrong. We aren't sure what timeline the Lord has given us with her, but every moment spent holding this little one is a gracious blessing.
Because of Madi's needed around-the-clock medical care, we have started a Go Fund Me campaign to help cover the outweighing costs. If you would like to donate, please visit www.gofundme.com/helpmadisonrylee. Any donation will help.