JourneyWithTheCrosiers: Always a Reason

Thursday, July 8, 2010

Always a Reason

My mom and I are with Beckett in the NICU. A pregnant couple walks in and they are talking with the nurse of the baby next to us. The mom looks over at us and says that baby has what our baby has. Spina Bifida. The last hour or so has been spent teaching and sharing our baby with this family on their NICU tour. A trip we made not so long ago. A visit that was so scary and overwhelming that I really do not remember any of it. I hope by meeting us today and seeing Beckett wiggle all over the bed, will help this couple in some way to deal with the diagnosis they just received for their little girl one week ago. It felt wonderful to be able to educate someone else. I have been on the information craving end for so long...full circle. I feel blessed and thankful to be able to help, hopefully in some way in their journey. Always a reason that is out of my control.

2 comments:

Chris and Melissa said...: God works in mysterious ways. I'm sure you and your sweet family have been a blessing to so many more people than you could ever know.; July 12, 2010 at 1:59 PM
Ciaran's parents, Jon & Wendy said...: Oh, I remember taking that walk to. :); July 19, 2010 at 2:12 AM

Beckett's Beginning

6/30/10: Born at 1:20 pm, 8 pounds 7 ounces, 20 inches long
7/1/10: Myelomeningocele repair surgery and insertion of EVD (exterior ventricular drain) to temporarily drain fluid from the brain. 2:45 pm-6:45 pm. Off the ventilator in recovery room. We saw him around 7:30.
7/2/10: Lots of waiting and staring at our beautiful boy! Finally ready to eat for the first time around 5:00 pm after the anesthesia wore off. What a relief!
7/3/10: Beckett was in a lot of pain as the anesthesia was completely gone by this point. Pain meds/Tylenol today!
7/4/10: Bandages from back incision removed.
7/9/10: Removal of EVD and shunt placement. 1:15 pm-5:30.
7/15/10: "Flip Day!" Beckett was given the okay to be on his back today, which means...we finally got to hold him! Lots of snuggling! :)
7/19/10: VCUG-normal. :) Hip Ultrasound-normal. :) Renal Ultrasound-normal. :) Circumcised.
7/20/10: HOME!!! After 20 days in the NICU. Discharge weight: 8 pounds 6.7 ounces.
7/23/10: First visit to see Dr. Nassim. Weight: 8 pounds 6.7 ounces.
7/29/10: Suture removal and wound check with Joy at Dr. Moriarty's office. No problems.
Weight check/One month check-up with Dr. McMonigle. 8 pounds 12 ounces (30th %). 21 1/4 inches long (75th %). Head circumference 37 cm (50th %). All looks great! :)
8/9/10: No more weight checks needed for this big guy... 9 pounds 7 ounces!!!!
8/11/10: First Steps Case Conference...Beckett will receive PT once a week for one hour. There is no real concern with his development at this point, but he qualifies for services, so he might as well get them!
9/1/10: Head CT...all normal. A little fluid. Back Dec. 15 for an MRI.
12/15/10: MRI. Fluid in the ventricles similar to the day the shunt was placed on July 9. Shunt revision on Friday. :(
12/17/10: New shunt placed by Dr. Moriarty. New location...behind the right ear instead of the frontal location! :) In Kosair Children's Hospital until 12/19/10.