May 21, 2022 Latest post:
Jun 10, 2022
Alice's story begins two years before conception. I, Priscilla, was in poor health, and one health issue meant Jason and I would need assistance with pregnancy. We put child planning on hold with that news. I spent the following year focusing on my health and determined to reverse prediabetes. After a year, my health was improving. We effortlessly conceived a child within three months.
The next concern was whether Alice would have the Tetralogy of Fallot (TOF), so we did genetic testing. Praise God, the results came back negative, with a 3% chance of Alice developing any type of heart defect.
We were thrilled and hopeful with these results! Then during the anatomy scan (the 20-week ultrasound), it detected a heart defect, but not just any heart defect, TOF. The medical team was shocked, and anyone in the field who learned our story was amazed, too, because there was no medical explanation for how this happened.
At this time, we were preparing not only to be new parents, but now we were prepping for a cardiac baby and all the different ways delivery could go. We had to wait and see if the VSD and ASD would be closed before delivery, which was not the case for Alice.
Alice was born on Sunday, October 21, 2018. After skin time with mom, Alice was transported to Rady's children's Hospital in San Diego. At three days old, she was prep and underwent her first Cath procedure. At 12 days old, she came home!
We left the hospital with a baby scale, post-ox machine, and daily medication. Our morning routines consist of checking her weight to make sure it wasn't dropping, checking her oxygen levels for the same reasons, and giving her meds. Becoming a parent for the first time is a whole new world, and becoming a new parent with these added responsibilities took it to a whole other level.
We planned for Alice's cardiac needs to be handled by UCLA. Her first procedure was in February 2019; we learned the stint implanted at three days old pierced through the pulmonary valve into the aortic valve. The doctor at UCLA could remove only 80% of it without causing fatality. UCLA determined Alice would need to go through open-heart surgery, which took place in March 2019. We were relieved and nervous as this date approached because it seemed as if we were one giant step closer to a normal life. Unfortunately, that was not the case. The surgery did not go as planned, leaving the VSD and ASD present. Alice's stats dropped in their attempt to close these holes; her body was not responding well to this common TOF repair. Her medical team was left scrambling to determine why this happened and how to fix it. But to God be glory, for Alice healed nicely from surgery and had no post-surgery complications! God, family and friends helped us get through this.
Thanks to a CT scan of the heart and lung branches, we learned the lung branches were underdeveloped and unable to handle the increased blood/oxygen with the VSD and ASD closure from the first open-heart surgery.
Alice underwent multiple cath procedures to balloon the arteries and help them grow. It worked for a time; then, the arteries were elastic, and one required 12 hours of surgical intervention. Alice is now 20 months old; her health was declining, and we were nervous, but we were looking at a facility if we didn't go through with it.
She underwent surgery, and again it did not go as planned. Alice was on life support for five days, and her chest remained open for 13 days. Now, when they say God is light in the darkness, this is where He shined. Alice made it off life support and made a pretty good recovery by her 2nd birthday.
Since then, she has been doing Occupational Therapy (OT) and Physical Therapy (PT) to help get her back to baseline. Alice also attended speech therapy and graduated in October 2021; woohoo! Oceanside Therapy Group has been a God-sent for our family! They always go above and beyond and maintain a high level of professional excellence! Alice loves all her instructors there, and we couldn't be more pleased with the progress she is making!
In February 2022, Alice had an effective cath procedure to close up the VSD, and Alice's body responded favorably to the new anatomy. Stay tuned for more updated Journals! Thank you for your loving support and prayers!