That was what the doctors told us on April 29th of this year.
“No genetic mutation? Are you sure?”
For as the heavens are higher than the earth, So are My ways higher than your ways And My thoughts than your thoughts.…
Before anything else, we’ve got to apologize to every for not having updated this blog over these past months. For some reason, (be it the desire for privacy or solitude during these difficult months since we got the news) we were reluctant to share so much of our daily/weekly journey during the pregnancy with our son, as we did with Bella back in 2012.
So…..to catch you up with things. On April 29th, we went in for a routine ultrasound and got quite the unexpected news. I say unexpected because we thought we ‘knew’ what we were getting in to with this pregnancy. You see with Bella’s spina bifida, the mere thought of a disability or birth defect was SO outside of the realm of possibilities (because of ignorance or lack of exposure to the concept), that we wouldn’t even know enough to expect or not expect anything. Following the diagnosis, multiple exams were done and it was determined that this was not a question of genetics or a mutation that would prevent Cristina from absorbing folate. When questioned about subsequent pregnancies, the information from the American Academy of Pediatrics: “Among US couples who have had a child with an NTD(Neural Tube Defect), the recurrence risk is 2% to 3% in subsequent pregnancies”
But, His thoughts are greater than our thoughts. When the ultrasound technician recognized the spinal defect in our son, her reaction was priceless. “This is like being struck by lightning twice. I don’t even know what to say to you all.”
BAM! Like a ton of bricks. Flashbacks of nights spent crying ourselves to sleep, days spent in the hospital with doctors explaining all of the things our child wouldn’t be able to do, and even worse, the pain in watching your child as they suffer the countless infections, surgeries and physical limitations associated with being a “special needs” kid.
For a few days, Cristina and I were MIA. It was a different feeling than last time….a different shock….a different ‘life-changing’ moment. How would we handle this? Moving beyond all selfish concerns or worries, how would we physically manage this? Cristina already physically struggled with the 2-3 weekly doctor’s appointments, physical therapy sessions and monthly trips to the ER at 3am. You see, it wasn’t about not wanting or being willing, joyfully to undertake such a responsibility…..it was simply the question of how.
Just as He does….even when He doesn’t speak with that loud, booming voice we’d all love to hear……the Lord kept His Hands in the midst of everything along the way. Even the dreadful day in which we heard the news that our son would the same birth defect as our daughter, His Hands guided the way. As we walked out of our appointment to schedule a follow up, the scheduler said “All I’ve got open is May 13th….if that works for you”. Yep, May 13th – feast day of Our Lady of Fatima….who we had also grown close to over the previous year. Over the months, God also sent other signs of His love for our little family.
This list goes on…….and week after week…..the Lord sent His messengers (unbeknownst to them!) to remind us, in our darkest moments of despair, that He was in charge and with us.
Jesus, I trust in you.
Really…..what else exists in this life, if not this utterance? Jesus, I trust in you! No matter what I plan, hope, and pray for……what can it mean if not supported by trust in His Will?
So before we knew it, the summer was fading and his birth was approaching quickly.
After a few pre-term labor scares (Cristina was closely monitored due to the numerous incisions/scars on her uterus from fetal surgery in 2012), the date was set for early September. Joy overwhelmed our hearts….and Bella could not wait to meet her baby brother who “has spina bifida…..just like me!”
After a rough C-Section (due to the delicate condition of Cristina’s uterus), followed by an even more brutal recovery, we welcomed our son, Andrew Joseph, into the world. Born on September 8th (Our Lady’s birthday!), the date couldn’t have been more appropriate……Our Lady had accompanied us during the previous months of awaiting a child who might have to endure a great amount of suffering in his life.
The problem with myelomeningocele is that after birth, spinal surgery is necessary ASAP. So, within 12 hours of his birth, Andrew Joseph was baptized by our close friend, Fr. John Peck, and then whisked away for surgery.
And here we are…..10 days later…..monitoring our little man as he heals from his surgery. Included with this birth defect is the increased risk of hydrocephalus, or increased fluid in the brain that can cause pressure and eventually the need for a shunt.
This is where we are – at the hospital NICU all day and home at night…..suffering through sleep as we long to have him home with us.
We ask for your prayers as Andrew Joseph is monitored…..and then discharged to come home.
As of tonight, his wound is healing and although there has been an expected increase of fluid and pressure in his brain, the doctors are not extremely concerned.
I apologize for the lengthy post….but it was the only way to best update everyone on this blog. Know that we appreciate your prayers more than you could ever imagine. The generous outpouring of support during Bella’s journey and now the emails asking about our family now, have been a great consolation for us.
We are blessed to have such a loving God and tender community of faithful that love and care for us.
Please, if you have any questions or comments, feel free to email me at Andrew.Pocta@missioners.org and I will share it with Cristina.
We will be in touch as we embark on this new chapter of our lives!
Andrew, Cristina, Maria Isabella and Andrew Joseph Pocta