9.27.16

 

And that’s a wrap!  Summer you were incredible to us, our best season yet!

As we head towards October it’s starting to hit us that we are nearing where it all began — October 27th.  But before the waterworks start, here’s where we are today.

 

Health Stats

11 Months (actual)/ 7 Months (adjusted)

Weight: 20 lbs

Height: 29 inches

Respiratory: Off Oxygen completely now for 4 months.  Follow ups with our Lung Doctors have been great, they’re happy with Jack’s progress.  Our big test for his chronic lungs will be this upcoming Flu/RSV season.  If we can stay out of the hospital (which is the ONLY plan) that will be a huge step in the right direction.  We got this.

Brain Bleed: Jack’s Neurologists are now keeping a close eye on his development towards adjusted milestones and any red flags that may appear(Jack is currently 11 months old actual age but 7 months adjusted).  The bleed resolved awhile back without needing intervention (shunt drainage) and now we are just plugging away with at home therapies.  To date, Jack is hitting all his adjusted milestones and each bridge we cross it’s as if another brick is peeled off our back.

Eyes:  Jack sees two Ophthalmologists – one that performed his laser surgery while in the NICU and a Pediatric Eye doctor that will follow him throughout his adolescence.  His laser eye surgery is looking good, no need for a touch up at this point.  He may need glasses later on down the road, but don’t we all?

Feeding: Jack will have his repeat Barium Swallow Xray test in a few weeks to see if he’s aspirating any liquids into his lungs.  Still on thickened bottle feeds as well as on solids.  His reflux seems to be on the way out (don’t let the door hit you) but still on Zantac twice a day to minimize.  He loves avocado and bananas.  He does not love broccoli.  Our child.

There are moments that we stop dead in our tracks and out loud will say to one another “how did we get here?”.  It’s usually when Jack is babbling full conversations to Frank (our dog) or when he’s belly laughing so hard he squeals or the moments when he puts his hand to our cheek and looks us straight in the eyes as if to reassure us it’s all in the rearview mirror.  We are at Month 11 and life is good. It’s just that simple.  We celebrated our third wedding anniversary early this month and like most first time parents spent our entire evening away from the baby, talking about the baby.  We talked about how scary and difficult this year has been.  We laughed about the irony of the two of us spending months and months in an intensive care unit because our previous hospital knowledge stemmed from episodes of ER and Grey’s Anatomy.  We vowed to get back on track as a couple and not just survive and run parallel through this madness.  We dreamed about what sports Jack will play and the instrument he’ll gravitate towards.  We whispered our fears about his development and future. Mom cried with guilt, the guilt that she wears like a pair of shoes every day that her body had one job and failed all three of us.  Dad said something beautiful to snap her out of it.  We looked at pictures from the first weeks and as if he knew we needed to be reminded — a text from Yaya (our babysitter for the evening) popped up of Jack and Frank rolling around together laughing– and once again we said out loud to one another “how did we get here?”.