Home Sweet Home

6-17-2011

We arrived back in Wisconsin late on Wednesday night. Our departing flight from Nashville was delayed slightly for a thunderstorm that was occurring - this was okay as it made our layover in Kansas City less. Both flights went well and I didn't have very much discomfort (I am sure the percocet I took helped with that). I gained a new respect for individuals who are wheelchair bound as many of the restaurants and shops in the airports are not equipped for wheelchair users and most everything is placed above the eye level making it impossible to look at things. I am grateful for the use of the wheelchair at the airports as I would not have been able to walk the distances needed to get from place to place. For the other moms who may have the surgery - I was very nervous about flying home and scared about the take off and landing of the airplane - the flights were much easier than anticipated - I did use one hand the entire time to cradle baby Rachel and my surgical site. The bumps from take off and landing were much better than the bumps felt in the car driving to and from the airport. I think the anticipation that I was going home to my girls also helped and that you do not have that pre-surgery anxiety with you. My husband guarded me like I was a piece glass ready to shadder (which in retrospect I kind of am). When we arrived in Milwaukee my brother-in-law Dave and my father-in-law Bill also were very protective and made our homecoming very pleasant. I can not express how great it was to see and touch my girls after being away nearly 3 weeks.

Our ultrasound on Wednesday before heading home went well. Baby Rachel's ventricles were still measuring normal (less than 9mm) and her Chiari malformation remained to be very slight. She was moving all extremities- we could see her moving her hips but it was hard to tell if there was movement at the knees as she had her legs crossed. She had urine in her bladder. My amniotic fluid was measured to be a volume of 12- there was no evidence of separation of membranes or of the placenta. I had my staples removed- that was not fun. My lower staples were slightly irritated but my incision was well approximated. I recommended to Mary that the mom needs a stress ball to squeeze while having the staples removed- it definitely stings but your incision does feel much better when they are out. I have steri strips in place and they do not seem to be irritating my "sensitive redheaded skin". My rash from the surgical prep and drape is nearly gone also. I am still having occasional painful bladder spasms but am hopeful they will resolve over time.

Our insurance company UMR is still continuing to deny coverage for the surgery- stating there is not enough evidence that the surgery helps with the disability of the lower extremities. We are going to appeal their decision. My husband has been doing research of other insurance companies that have changed their policies and approved the surgery as this is considered to be the new standard of care for spina bifida. We will keep you updated on the process and results with UMR as this may also occur to other families.