Time has a funny way of sliding around in a crisis. It moves slowly and quickly all at once. It’s been one year since our Jack was born. One year since our life flipped upside down. One year since family, friends and strangers mobilized in big ways to help us. One year since so many people around the world started praying for Baby Jack. What a year it has been.
The year was split in two - six months in the NICU and six months at home. For 182 days we made our way to the hospital for visits with our sweet boy that were never long enough. 182 days where we left our girls to hold their brother then left our son to go home to his sisters. 182 days of split hearts and minds always belonging in two places at once. Six months of a deep-end education in the medical world, learning the language, the tools, the right questions. Six months building relationships with nurses, doctors and therapists who were working for the life of our son. Six months of sorrow, fear, weariness, uncertainty, mingled with faith filled joy.
Six months at home. 183 days of learning to function as a home nurse, respiratory therapist, physical therapist, occupational therapist, and dietician. 183 days of keeping oxygen flowing, monitoring saturation levels and heart rates, counting calories and ounces, therapy sessions, doctor visits, medical supply visits, weight checks, hand washing, hand sanitizing, more hand washing and more hand sanitizing. Six months of navigating the answer to the question - how old is your baby? Six months of having all our children under one roof. Six months of together. Six months of exhaustion, fear, uncertainty, mingled with deeply thankful joy.
Our God has been exceedingly gracious in answering the prayers of so many. Jack is doing remarkably well. He should be facing many challenges. We see many other babies with similar stats as Jack who are in much more serious and precarious positions. Jack should be among them. But he’s not.
Jack’s R.O.P. has completely cleared up. There is no disease and his retinas have fully vascularized. He has no further need of treatment!
Jack’s lungs are growing and getting stronger. He is quite stable and has made good progress. He is close to coming off 24/7 oxygen and we are anxious for that phase. He started crawling last month and you can imagine that the oxygen tube is a pretty serious hang up for a baby on the move! He gets frustrated with his cannula and has gotten really good at pulling it off, tape and all. His pulmonologist expects that with time, he will nearly completely gain normal lung capacity. 24 week lungs take extra time to grow, strengthen and replace scar tissue with healthy tissue.
Jack continues to be small but he is steadily growing and gaining weight. Last month Jack finally made it onto the growth scale, clocking in at a whopping 2nd percentile! We'll take it!
Among other appointments Jack has regular visits with his pediatrician as well as twice monthly physical therapy and child development sessions. Everyone is pleased with his progress. His therapists say they look forward to his sessions because he's always surprising them with new accomplishments! We can't predict what the future holds for his development but all signs point in a positive and healthy direction.
"God is our refuge and strength, a very present help in trouble.
Therefore we will not fear though the earth gives way,
though the mountains be moved into the heart of the sea,
though its waters roar and foam,
though the mountains tremble at its swelling."