3.8.16

Sixty degrees this week.  Seasons are about to change again.  This will be our third season spent in the NICU.  Big things have happened to us when the weather changes.  With Spring comes renewed hope, fresh beginnings and warmer thoughts.  Bring it.

 

19 weeks old (actual age) | 3 weeks old (adjusted) 

weight: 4,445 (9 lb 13 oz)| height: 21.5 inches

Respiratory– Jack is absolutely kicking Oxygen’s butt right now.  He has come so far from his incredibly sick lung beginnings and to think last week he was sitting around 24-27% Oxygen requirements, this week he’s been steady at 21% baby (still on 1 liter pressure flow)! AND he ripped out his nasal cannula one afternoon and we let it sit outside of his nose for a little while to see if he could handle and he lasted for a decent amount of time.  Seasons are changing.  There have been talks amongst our Doctors that if Jack can master all his feeds by mouth, we can be sent home on Oxygen.  At first, we were weary of this– after all this time and we won’t come home with just the baby?!  But seeing how Jack is progressing on the respiratory front and he tends to need O2 most during feeds, we would be willing to take the this responsibility of weaning him down off his already low settings.  The ultimate goal is still to continue to challenge and wean him off the flow he’s still on while in the NICU.

Brain Bleed (Grade IV) – Jack will get a brain MRI in the upcoming weeks to get a clearer picture of his bleed.  The weekly ultrasound pictures throughout these past 4 months don’t give the most detailed view.

Eyes– ROP Plus disease after the laser treatment has been regressing.  The Retina Specialist said we are almost out of the woods on the ROP front.  It’s likely Jack will wear glasses as a child….as most superheroes do.

Feeds– Wait for it….we have had 3 consecutive days of all feedings by mouth. WHAAAAAT! I know!!! Don’t say it out loud. Don’t jinx it. Don’t tell Jack.

 

The last few days have been incredible.  Jack is showing more progress in this short amount of time than he has over weeks at some points on this journey.  He’s a real baby now.  It sounds strange, I’m sure, but when we look at him he looks right back.  He looks around, he checks it all out. He laughs, he smiles, he takes a bottle, he’s a real baby now.

We had a full circle moment a few nights back, getting the opportunity to meet a new couple on the floor with a micro preemie with a brain bleed similar to Jack’s.  The nurses thought it would be good for them to speak with us and meet Jack.  As we stood there and told them “this is going to be an incredibly humbling, difficult, rewarding journey and you have to stick together through it all” we immediately flashed back to being introduced to Anna’s parents.  The baton has been passed to us to pay it forward for the next family just starting out on this ride.  As we spoke and shared fears and hopes, we looked over at Jack in his crib and he was still that real baby.  There are moments we think we will look over and still see that baby we met back in October.  You instantly remember how tiny, how frail, how translucent, how helpless, how sick.  It never leaves you, I imagine it never will.  But now instead of feeling sad and sorry for how hard Jack has had it we feel encouraged and proud that he’s come so far, proved so many wrong and one day we can say to him and he’ll understand how this entire moment in our lives shaped the three of us forever.

 

Happy 19th Week Jack!  You’re doing everything you’re supposed to be doing and we could not be more proud.  Keep on keepin’ on kid!