Hand to Hold's Official Blog: Written by Parents for Parents

Record It – Create a Timeline

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!

Aimee Sprik About Aimee Sprik

Aimee Sprik (IL) is mother to Connor, born unexpectedly early at 26 weeks, in December 2008, due to an infection. Connor, with his parents, survived a complicated 120-day NICU stay, which changed their lives forever. Since bringing her son finally home, she's felt passionately about volunteering her time and resources to supporting fellow NICU parents, both at the hospital where Connor was born, and by co-founding Life after NICU, an online parent support forum now moderated by Hand to Hold. You can follow Aimee on her personal blog, Sprik Space, or send her an email.

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