Meet Sunnie...

March 18th - the day the world stopped…

At 32 weeks and 5 days into our pregnancy we were told, “There is something concerning on the ultrasound. We are going to refer you to a high risk doctor in Dallas. Her stomach is near her lungs and it shouldn’t be. It’s called congenital diaphragmatic hernia.” 

The following weeks consisted of twice weekly ultrasounds, MRI’s, bloodwork, meetings with specialists all to prepare us for what birth would look like and the care Sunnie would need. I grieved somewhere along the way… mourning the loss of being able to hold Sunnie, of not hearing her first cry. I mourned the loss of a joy filled pregnancy, replaced instead by worries and unknowns. 

We made the decision to stay at Medical City Dallas with Dr. Crombleholme which was only 2 hours away from our home. This would allow my husband, Derek and I to spend time with our 3.5 year old. I prepped my classroom for a substitute and packed bags, not entirely sure what to bring. 

The numbers looked good. She was moderate-severe but only had a 20% chance of ECMO and had good lung volume at 36% (based on prenatal scans). On April 25th we made the 2 hour drive into Medical City Dallas at 6pm. Dr. Crombleholme was ready, the team was ready with intubation supplies and crash carts… I wasn’t ready.

Sunnie Rose made her debut on April 26, 2022. I saw her for a brief moment and then she was off to fight for her life. I was wheeled to see her 2 hours later, sometime near midnight. She was perfect, stable. 48 hours into life Sunnie had many difficulties and it became clear her body simply could not fight this without help, her heart and lungs needed to rest. On April 29th at  2:05am, Sunnie was placed on extracorporeal membrane oxygenation (ECMO), the highest form of life support.

We thought things were finally calming down but at 5 days old, Sunnie’s doctor told us he was moving to a new clinic. I felt betrayed and hurt. I should have had a choice. Yet again, another choice was taken from me. We made the decision to stay in Dallas for this doctor. After a lot of discussions we made the decision to transfer Sunnie to Johns Hopkins All Children’s Hospital in Florida. On Friday, May 5th - 9 days of life, 7 days on ECMO, Dr. David Kays flew from St. Petersburg, Florida with his ECMO team to pick up Sunnie and bring her to their CDH unit. 

Sunnie flew with a full plane of medical staff, Derek began the 20 hour drive, and I, still healing from birth and hemorrhaging, headed to the airport to catch my flight to Florida. Once we were settled, she was scheduled for repair surgery. In hindsight, things went relatively smoothly after her repair. She was weaning off ECMO, coming off sedation meds… although there were MANY hiccups along the way, including a brain bleed. Sunnie was extubated on day 31 and at 33 days old I was finally able to hold my baby! She was stable and I finally felt like I could breathe. 

Derek returned home to help be with our son while I stayed by Sunnie’s side, pushing myself to pump and feed her around the clock. With little improvement and reflux causing spit up and slow weight gain, she was scheduled for a nissen fundoplication and g-tube surgery. FINALLY! A light at the end of the tunnel. We got ready for discharge!! July 11, 2022, after 75 days in the hospital (9 in Dallas, 66 in Florida), we were DISCHARGED!!

Life at home was beyond words. We were so glad to be all together as a family of 4! Dawson loves his sister more than anything and she adores him! But, after being home for 8 weeks, RSV reared its ugly head. Sunnie was re-hospitalized and diagnosed with pneumonia, RSV, and rhinovirus. The trifecta. She was placed on high flow oxygen and seemed stable but after the first night she took a turn for the worse and went into respiratory distress. The chaplain held me as Sunnie was bagged and sedated, a team of 20 people surrounding us. I will never forget the look on her face as she tried to get air into her little lungs.

Thankfully, she began to slowly improve and after a week we were discharged with oxygen. We were so blessed during that time by The CDH Foundation, who offers grants during re-hospitalization! Being 3 hours from home, without a car, I relied on hospital meals and Door Dash. The support from groups like The CDH Foundation and Tiny Hero not only helped financially but emotionally, as I felt surrounded by people who not only understood but who stood with our family. We were also surrounded by so many people at home with donations, meals for our family, our families taking care of Dawson, we are loved deeply!

Thank you will never be enough to everyone involved in caring for Sunnie and our family during these last 6 months. The CDH fight continues.

#SunnieStrong #thecdhfoundation