Tuesday, September 16, 2014

Surgery #1 - Suturectomy

***Abby's Surgery is now scheduled for Friday morning***

It looks as though Abby will be having her first cranial surgery this Saturday...which is not the surgery we thought she'd be having this week.

Since being re-admitted to CCH a week ago under the diagnosis of "failure to thrive," we'd been working under the assumption that we were heading toward the insertion of a G-tube. This is a surgically implanted feeding tube that would ultimately be a safer option for Abby as she grows and becomes increasingly mobile. They needed her to show that she could tolerate her feeds via her current feeding tube before this procedure could take place, but the doctors were optimistic that it would be a much better arrangement for her in the long run. We'd spoken to GI a number of times, as well as the pediatric surgeons, and her operation was to take place on Thursday. I signed the consent forms this morning, acknowledging our willingness for her to undergo this procedure, only to have the rug pulled out from under us when neurosurgery came to visit this evening.

After having an MRI of Abby's brain done this afternoon, the craniofacial team determined that it was necessary to take steps to release pressure in Abby's skull as soon as possible, lest it start negatively impacting her brain. Due to the severity of her craniosynostosis, she will be having an endoscopic suture release this week, in order to allow her brain to grow until she can have the more extensive CVR surgery performed when she is at least 6 months old. The neurosurgeon explained that she may also require helmet therapy in the interim, but that remains to be determined. Because of the urgency of this matter, the G-tube will have to wait for another month or two as we see how Abby recovers from her skull surgery.
Suffice it to say, Jameson and I were a little shocked by neurosurgery's surprise visit this evening, and are still sort of reeling from the news. When the attending neurosurgeon said "as soon as possible," I don't think either of us were really expecting that to mean this week.  We're glad that the craniofacial team is being proactive in the monitoring of her cranial pressure, and taking steps to alleviate potential problems now as we'd started getting nervous about the prospect of waiting 6 months to do anything about it. That said, we're obviously concerned about our almost six-week-old baby undergoing skull/brain surgery.  We know that this surgery is necessary for her well-being, but I anticipate we'll be doing a lot of praying this week. 

Abby has been her normal, adorable self through the chaos of surgeries being planned and cancelled all around her, and was an absolute rock star during her unsedated MRI today. We are totally enamored with our sweet girl and will be giving her lots of extra snuggle time before we head to the OR this weekend.


  1. Please know that we are covering y'all in prayer during this time. I cannot imagine the emotions, but I know that y'all are amazing parents with an amazing and beautiful little girl. Always praying and sending our thoughts! Ben and Ashley

  2. Jameson and Bethany, you have a precious beautiful baby. Thanks for letting us know what's going on so we can know how to pray. May God strengthen you in this ordeal. Lord we ask you to completely heal Abby and let her come home with her mom and dad quickly.
    We love you guys and miss you. Charles & Judy