JourneyWithTheCrosiers: Official start of the BLOG

Tuesday, March 16, 2010

Official start of the BLOG

Welcome to our new blog site! The below posts are emails that I have sent to our family and friends regarding our son's diagnosis of meningocoele spina bifida and hydrocephalus when I was 22 weeks pregnant. I was sent to Dr. Pietrantoni (perinatologist) after my regular OB's office was unable to "get all the correct measurements" they needed. I am very thankful to be under the best care possible during the remainder of my now "high risk" pregnancy. I see Dr. Dunn next week on Monday the 22nd. I will continue seeing her for regular OB care, but will see Dr. P on a regular basis for "baby care." Next Wednesday, March 24th, Rodney and I will be seeing Dr. Moriarty (pediatric neurosurgeon) to discuss the surgeries our son may have in his first few days of life. We will be learning a lot of new information at this appointment, however I fully anticipate it to be extremely overwhelming. Will update as I know more. KEEP PRAYING!

3 comments:

The Harrell Family said...: Sending lots of prayers your way!; March 17, 2010 at 8:25 AM
Terry, Leslie, Noah, Allie, Laynie & Gracie said...: So glad you started this blog! I am anxious to keep up with you all. I will continue to send lots of prayers!!!; March 18, 2010 at 3:16 PM
Chris and Melissa said...: You and your sweet baby boy have been in our thoughts so much the last couple weeks. We're praying that the good Lord will give you strength, peace, and a cheerful heart through the remainder of your pregnancy. Please keep us updated!; March 23, 2010 at 10:17 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.