Record It – Create a Timeline

August 19, 2013

The last post we shared talked about recording your miracle’s journey in a story format, like a blog or collection of essays. If that endeavor seems daunting to you, what about keeping just those key details in a simpler format… a running status list, or a timeline?

While Connor was in the NICU, I kept a running status list of his current developments listed on our blog, in the sidebar. The brief status updates quickly served those who were checking in on our blog, more often than I had time to update with a fully written post. (At the time, Facebook wasn’t really being used in the same way it is today… but I’m glad that I have a written version of these brief updates.

Over 4 years after our NICU experience, it reads more as a synopsis or a timeline of his eventful 120-day stay in the NICU. I have referred to this list time and time again when I’ve needed to reference certain aspects of his NICU stay, to recall specific details. I am so glad I took the time to do this! (Mine reads in reverse order, because that’s how I happened to log new details when I was keeping this on our blog.)

Here is that list:

04/14/09 Sodium starts at 147, ends at 146. 8lbs, 6oz / 19.75″ After a 120 day stay, CONNOR COMES HOME!
04/13/09 IV fluids stopped. PICC Line #3 pulled. Suture sticks removed by surgeon. Continued weight gain.
04/12/09 First Easter. 8lbs, 6oz / 19.75″ Still on IV fluids. Discharge Monday night or Tuesday.
04/11/09 Gains another 3 oz. Still on IV fluids. Discharge hopefully on Monday.
04/10/09 Starts IV fluids, sodium & potassium levels begin to stabilize. Gains 3 oz back. Discharge hopefully Easter Sunday or Monday.
04/09/09 Connor loses nearly 7 oz. Discharge for Good Friday CANCELLED. Completely dehydrated. Switched from 24-cal formula, back to 22-cal.
04/08/09 MRI. Mommy & Daddy sleep-over.
04/07/09 Photo shoot with Harriet
04/06/09 Antibiotics all done!
04/04/09 Nurse says he’s home WITHIN THE WEEK… by Good Friday!!!!!
04/04/09 Feedings are all PO Ad Lib. IV nutrition stopped – PICC line now hep-blocked. 8 lbs, 8 oz.
04/03/09 Nurse says he could be home in 2 weeks… 2 WEEKS!
04/03/09 So far so good… nasal cannula gone, nearly all feeds today PO, up to 70 ml per feed. IV nutrition modified to wean.
04/01/09 Over 4000 grams! 8 lbs, 13 oz. Up to 60ml per feed and occasionally takes entire feed by mouth.
03/31/09 No cannula for 17 hours. Up to 50ml per feed.
03/30/09 8 lbs, 8 oz. / 19.7″
03/29/09 Up to 30ml per feed. Moving back to the step-down side tonight!
03/28/09 Third day of negative cultures! PICC line #3 good to go after 3 attempts over 6 hours.
03/27/09 Off CPAP, back on nasal cannula. Feeds restarted today. PICC line #3 insertion FAIL.
03/27/09 Second day of negative cultures… so far so good!!
03/26/09 First day of negative cultures… 1 more to go!
03/26/09 They’re calling it sepsis…
03/26/09 Connor put on CPAP machine, blood gases a little off, this is to help with the bradys/desats. Completely NPO.
03/25/09 Bacteria found in blood & urine, PICC line pulled, lots of bradys/desats
03/24/09 Connor develops major infection – gram negative rods in bloodstream
03/23/09 Discharge plans begin!
03/20/09 Bottle feeding EVERY feed, 50% PO / 50% NG
03/19/09 VCUG shows no reflux
03/17/09 Connor moves to the step-down NICU!
03/16/09 7 lbs, 13 oz / 19″
03/16/09 Bottle feeding 3x/day, 45 ml/feed
03/12/09 Bottle feeding begins again – 2x/day
03/11/09 Newspaper photo shoot & video swallow study (inconclusive)
03/10/09 Officially over 7 lbs!
03/07/09 Bottle feeding stopped – all feeds by NG tube
03/06/09 Desatting issues – back on nasal cannula
03/03/09 1st time feeding from a bottle EVER, 1st time w/ breastmilk since Christmas
03/02/09 2nd attempt at feedings
03/01/09 6 lbs, 1.5 oz / 18.9″
02/28/09 Off the nasal cannula and breathing 100% on his own!
02/27/09 ROP officially regressing
02/26/09 Extubated and in a swing!
02/24/09 1st attempt at feedings – unsuccessful
02/23/09 5 lbs, 6 oz / 18.75″
02/22/09 Surgery #3 – Laser Eye Treatment for ROP
02/21/09 He POOPED!
02/16/09 Surgery #2 – Remove ostomies and reconnect intestines
02/13/09 Eye Exam – ROP, Stage 3/Zone 2 with early Plus disease in both eyes
02/11/09 Cranial Ultrasound – IVH much improved! L – nonexistent, R – negligible
02/09/09 Postponed – Surgery #2 to reattach intestines, due to possible infection brewing
02/04/09 Connor is officially over 4 pounds! (4 lbs, 2oz)
01/30/09 Connor graduates to an open crib!
01/23/09 Wound Vac removed! Mommy gives Connor his 1st bath since birth
01/16/09 1 MONTH OLD
01/14/09 Eye Exam – ROP, Stage 2/Zone 2 in both eyes
01/13/09 Connor switches from the ventilator to the nasal cannula
01/09/09 Connor develops major UTI w/ E Coli in blood – gram negative rods found
01/06/09 Wound Vac installed due to incision deteriorating to open wound
12/31/08 Surgery #1 – 20 cm of intestines removed due to NEC, given 2 ostomies
12/26/08 Connor develops NEC, put on ventilator
12/22/08 Connor rolls over in front of Daddy & Grandma R.
12/21/08 Cranial Ultrasound, IVH discovered – R Level III, L Level I
12/20/08 Mommy holds Connor for 1st time
12/19/08 Mommy able to see Connor for 1st time since birth
12/17/08 Daddy holds Connor for 1st time
12/16/08 Connor born at 9:43pm, 13.75″, 2 lbs 6 oz

Reading through it, you can see how our NICU stay truly was a “roller coaster”… full of ups and downs, more good days than bad, and a very long ride at that!

Keeping a timeline is another example of how you can chronicle your NICU and your life after NICU journey. Just keep basic notes in a small journal, or NICU Notebook, as you go. I referred to our timeline often, during our journey and beyond, especially on the really hard days when I needed to see just how far we’d come. This timeline has helped to give me perspective, both then and now.

Even if you’re home now after your NICU stay, or your child has been in the NICU for awhile already, it’s never too late to start keeping your own timeline… track your little one’s growth, outcomes of follow-up appointments, milestones reached, etc. Your timeline can be as detailed or as simple as you want it to be. Good luck!