2.14.17

A Sweet 16 Celebration. 

This may look confusing to most but to us today marks Jack’s Original Due Date day one year ago. Jack was born four months premature– 16 weeks early to be exact. Anyone reading this knows us by now–we celebrate every moment. No matter how painful the memory might have been, today is a reflection of how we found the other side.

Every year we will celebrate today as our Sweet 16. Representing the 16 weeks extra we got with Jack on this earth. 

Jack turned one back in October and to think of how much has happened in these past four months! We now have an on-the-move wild little human who is kind, happy and unaware of the intense start to his life. A little human that has touched so many of our lives as a gentle reminder of what’s important. To witness a micro preemie survive and beat odds and flourish is to witness a miracle. We will never forget one day of our long journey to get to this point, we will never stop fighting alongside of Jack and we will certainly never stop eating cake. 

Jack- Happy Sweet 16! You never asked for any of it but you fought regardless. One year when we are celebrating your ‘Sweet 16’ and you ask us why we do this– the answer will be simple. This day we celebrate the day all your guardian angels reported for duty. 

Health Updates:

Brain Bleed– We have been discharged from our Neurosurgeon follow ups (cue: insane amount of Mom tears) because Jack is now at the One Year (actual age) mark and out of the woods for any type of intervention like a shunt for fluid drainage.  His head ultrasounds have been stable showing no ventricle swelling for quite some time now.  Our neurosurgeon said he’ll always have abnormal ventricles just based on the grade IV level of brain bleed he experienced.  We will continue to see our Pediatric Neurologist as she monitors us for red flags of learning disabilities(will unfold later), milestones not met and possible cerebral palsy.  The bleed is always going to be our biggest fear of the unknown but like everything we have experienced on this roller coaster ride – we can control how much we put into Jack’s development and the rest will reveal itself as we grow.  If we need to pivot, we pivot.  We are expert pivot-ers these days.

Eyes– We see two Pediatric Ophthalmologists – One that performed Jack’s laser eye surgery in the NICU and the other to follow us throughout adolescence.  From a laser eye treatment front- our Doctor isn’t seeing any new vessels heading towards to retina that he would need to do laser spot treatment on so we’ll continue to monitor there.  Our second doctor is starting to see astigmatism but to the extend of when/how Jack will need glasses is still a little down the line.  Chances are he will wear glasses just based on the under development of his eyes and the level and length of Oxygen he required during his NICU stay and after at home.  He might need for everyday wear or just to see the blackboard in school.  Glasses schmasses.  We will get every color to match every outfit (like the practical mother parents we are).

Chronic Lung Disease– LET ME HEAR IT IN THE BACK ROWS!!! WE HAVE OFFICIALLY RECEIVED OUR LAST ROUND OF MONTHLY SYNAGIS SHOTS FOR THE FLU/RSV 2016/17 SEASON THIS WEEK! We are still holding our breath through this end portion of the flu season but Jack had one minor cold this winter, nothing requiring Oxygen, and his body did what it needed to do to fight it off.  We continue to have our regular follow ups with our Pulmonologist and they’re happy with his lung development to this point.

Physical Therapy– Jack continues his 2x per week visits at the house with PT.  He’s cruising around the entire house (particularly right towards the stairs, eek!) and will let go with one hand, realize he’s let go and get excited, clap and fall down.  No shortage of self appreciation in this little boy!  He will be walking before we know it so we’re using these last moments to bubble wrap the entire home.  Our therapist has been with us since we first got home and Jack would need to do tummy time with his oxygen tubes tangled around them both and the pulse oximeter beeping wildly with every movement.  Those sessions feel like yesterday but also years ago.  It’s incredible to be able to share these big milestones with our therapist that has been on our journey since we left the comfort and safety net of the NICU team.  PSA- hug a pediatric therapist today.  On paper they’re working with your baby but in reality they’re holding every family members hand up this mountain.

Here’s a glimpse into the 16 weeks between Jack’s actual first birthday (October 27th, 2015) and his original due date (February 14th, 2016)…