Born: February 2013
Life Verse: Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. – James 1:12
Birth Defect: Congenital Diaphragmatic Hernia
Birth Story: We found out about Stella’s birth defect at my 20 week ultrasound. From that day forward we started going to Minnesota Parental Professional in St. Paul, MN. They worked with us to monitor her prenatal progress, set-up meeting with the staff and surgeons at MN Children’s Hospital as well as managed my care and delivery.
By the time I was 39 weeks pregnant, I was in a hurry to get her out. I was quite large during my pregnancy – I had an extra two and half pounds of amniotic fluid due to her condition but also I stress ate – a lot! I was induced on at 9am that morning and with the help of pitocin and an epidural, I was ready to push by 5pm that evening. After 4 hours of pushing, she never made it under my pelvic bone, so she was delivered via c-section. Turns out she had a large head! 🙂
I remember them delivering her, holding her up for us to see for about 15 seconds and then rushing her from the room to get her intubated and down to the NICU. She was 8lbs 12oz and 21″ long. I remember thinking how beautiful she was as I sat in recovery with my Mom.
Hospital Story: Stella was placed on ECMO about 8 hours after she was born as she had serious pulmonary hypertension. She was 14 days old when they repaired her hernia (a 5 hour surgery), she was still on ECMO for that surgery. Two days after her surgery – 16 days old – she was removed from ECMO. One week after that, Mike and I were able to hold our little girl for the first time – she was 3 weeks old. We were also released from the Ronald McDonald House that week and stayed at home from that point on, making the 30 minute drive to and from the hospital everyday.
Stella was FINALLY extubated at 6 weeks old and we were able to see her whole face for the first time since she was born – it was also Good Friday. Our parents and siblings were able to hold her for the first time on Easter Day. Stella still need oxygen with a nose canula and we could now start to work on oral feeding at this point – which did not go well, as we learned she had REALLY bad reflux from having her stomach and esophagus develop in her chest.
For six more weeks we worked on weening her off of oxygen and pain medicine (she was heavily medicated while she was on ECMO and intubated). We also continued to try breastfeeding and bottle feeding – she had no interest in either and was being fed by NG Tube. After A LOT of talking we decided to have one more surgery and have a J/G Tube placed in Stella stomach so we could pump feed her AT HOME!!
87 days after she was born, Stella came home.
Post-hospital Journey: Once we got home, Stella started Occupational Therapy and we were blessed with a fantastic OT named Pete. Within about 3 months of working with Pete, Stella was starting to catch up on development goals, however Stella was still not interested in eating orally so we moved forward with a more permanent G tube port. From that point on we worked on doing bolus feeding and we became very good at entertaining her in her high chair.
At 9 months old we were able to get Stella off her feeding pump during the day, which allowed Stella to start crawling at 10 months old – right on track with any “normal” child. By her first birthday we were off the pump all together and since she was still not eating orally, her birthday cake was just for looks and for her guests of course!
At 13 months old, Stella ate a piece of cake at her Grandma’s birthday party and the ball just stated to roll from there. Slowly but surely she started to feed herself and by 18 months old we were able to stop all bolus feeds during the day which means we could send her to day care. By Halloween that year, Stella was no longer using her G-Tube and we were able to start the countdown to her final surgery – removing her port.
A couple weeks after her 2nd birthday, Stella had her g-tube removed and a couple weeks after that her sister was born. 🙂
Today: Stella is now 4 years old is considered “normal” by all standards. I remember when she was in the NICU and I was so worried about all the drugs they were giving her to keep her painless and sedated. “What is this going to do to her brain development?” I would ask the doctors. Well I am excited to say that Stella is a very smart little girl – probably too smart for her own good some days – she loves life and is constantly dancing around our living room in costumes or playing pretend with her dolls.
Last year she started Preschool and we found ourselves realizing that for the first time we didn’t have to explain her beginning to her teachers. She is so “normal” now that our doctors don’t even write her history on her health form. While it is no longer something we talk about all the time, it is still a big part of her story and of ours.
Last May she graduated from Preschool on the 4 year anniversary of the day she came home from the hospital. We sat in the audience with all the other parents, holding back tears. For many months we weren’t sure if she would even live, let alone stand at the front of a stage reciting Philippians 4:13 with a big smile on her face.
God is so good!