Wednesday, March 27, 2013

Our tough little peanut

January 14th Lily was back at Primary's for a decompression surgery.  Basically, her cerebellum was enlarged and was putting pressure on her brainstem. The 4 neurosurgeons at Primary's all agreed that a decompression surgery was the best option for Lily. Corbin and I both felt good about the decision to go ahead with the surgery. Dr. Brockmeyer who also closed Lily's back lesion performed the operation. It was to be a pretty crazy day.

We showed up at the hospital in the morning and went straight to Same Day Surgery. A nurse pracitioner then took us into a room to once again gather Lily's history and get her changed into her hospital jammies. Then we had the most bizarre encounter with this truly tactless and ignorant nurse practitioner. I don't even know where to begin with the way we were treated. She first asked if Lily had gotten the in-utero surgery. I told her that we didn't qualify so we weren't able to. She then proceeded to go on and on....and on about how great the in-utero surgery is, that it would have resulted with Lily walking (this, by the way, is false info). Corbin and I were speechless.  I told her we couldn't have the surgery because of my history of premature labor. "Why do you have your babies early?" she asked me.  "uhhhh, I don't know" I responded. She then went on "I have a friend who had  5 children and she exercised through all of her pregnancies and she didn't have any of her babies premature".  To be honest, I didn't really know how to respond. Was I having a "fat" day? "Well, I actually did exercise through all of my pregnancies and my babies were still early" I said. The questionnaire continued with the usual history questions. I guess I stumped her with that.  She also complimented the jeans I was wearing.  "Oh, those are cute jeans, they were in style when I was young".  Is she for real? This poor lady obviously slid through the employee screening cracks. We were made to feel like we were somehow at fault for Lily's challenges and that it was "too bad" we couldn't get the surgery that would have spared Lily her trials. Luckily Corbin and I took it in stride and figured we'd cross paths with people like her again and again. Sadly, she wasn't finished. Finally it was our turn to go out to meet with the anesthesiologist who would be with Lily. As this NP was walking us out she asked Corbin what he was studying. Corbin said he was getting ready to start PA school in June.  Her response was this "right now there is an over-abundance of PA's so they aren't finding jobs" which is totally untrue. She went on about how much better NP's were. I guess if we're judging by this lady...we can rest assured PA's are the way to go. Can we please go somewhere where this nurse practitioner is not? Please? Afterwards when we had left Lily, we laughed about it.  It was unbelievable.  And yes, I did mention this to the spina bifida clinic director...who happens to be an AMAZING NP...but seriously...this woman should not be working in a job where she talks to people who are about to send their babies into surgery.

I think the hardest part for me is that moment when I have to hand my little one over to the anesthesiologist and they go beyond the doors where I am not allowed. I am so blessed to have Corbin.  He was right there, we cried together for a moment, then went down with the rest of the tired, scared, traumatized parents and got ourselves an omelet.

The surgery consisted of opening up the back of Lily's head/neck and removing bone from the interior of her skull and removing a bone spur from the top of her C1 vertebra. The surgery didn't go as long as they expected and Dr. Brockmeyer came to find us after about 45 minutes! Dr. Brockmeyer felt that this was just enough to allow her brain to "bloom". I went back to find Lily (only 1 parent at a time) in recovery and she was already waking up. I was able to breastfeed her right away. Shortly after we were sent up to a room on the infant med/surg floor. Lily did pretty good. No oxygen needed this time. She was eating great, it was all she wanted to do. I just played the part of Lily's personal pacifier as needed. I mean....what do I have to complain about really? She was very sore. We could hardly move her without causing her pain. The nurses were good about keeping her as comfortable as possible with pain medication. I stayed in the hospital with her so that Corbin could go home and get Wyatt and Skylar into bed.  My amazing Mom also came up to help us out for a few days. The night was rough. Lily had a hard night and cried for long periods in discomfort and pain. Her cries caused her little 5 month old neighbor to wake up and cry and it was just a crying fest. Finally at about 3am she was able to settle down and get some sleep. By morning she even showed us a smile. We were able to go home that afternoon.

The recovery from this surgery has been slow going. For several weeks Lily couldn't even lift her head. She is finally regaining some head and neck control. We are hopeful that she will continue to progress although there are no guarantees.  Her right sided facial weakness has resolved. It will just be a matter of time before we will see progress with her upper body strength because she is starting from zero.

Lily continues to bless our lives in ways we never thought possible.
stitches, ouch!

Smiles for Daddy

Happy to be home playing with my slinky (head still orange)