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)


  1. McKenzie, reading this post just makes my heart break. You two are so strong!! And those pictures of Corbin and Lily just leave me speechless. They are so precious. You are always in our prayers!

  2. I love hearing how you are doing. Lily is amazing. Every time I read about her and her ability to face all of these challenges I am inspired. What an amazing daughter of God.

  3. I have 3 children. Our youngest, Jordan was born 9/28/12 with myelo spina bifida. He had his 6th surgery 3/3/13. I could completely relate to your comment about handing your precious baby off for surgery. I am crying as I type this bc I can so vividly remember that feeling each time. I get better at so many things as we journey through this, but that part is just as hard every time. We have met so many amazing people but also a couple that just make your jaw drop. I will add your baby and your family to my prayers tonight. Thank you for sharing. You touched my heart.

  4. Just saw the orange head comment w/the picture. Made me laugh! That stuff takes forever to come off.

  5. Sorry you had to encounter the village idiot at the hospital. My uncle works there and he says there is a couple like that. Lilys battle wound looks good for being where it is. Shes happy so that makes life easier. Good job on staying strong and having faith that it will work out the way its supposed too.

  6. I always feel like I'm barging in, but my daughter, who plans to name her daughter Lily when she gets married, asks me how she's doing. She met Corbin on an Ambulance Transfer in Cedar. My dad had surgery for bone spurs in about 2003. He had the same stitches. I had early labor with my son and last daughter. The one who met Corbin wanted to be born at 4 months. VERY impatient girl. We held her off as best as we could. I couldn't move and no one knew I was expecting her. Her due date was Feb. 23 and she turned 19 on Jan.22. We lived in my home town of Kanab at the time, so our doctor sent us to St. George. I had a similar nurse who let little jabs out. I finally told her this was my third baby and I kind of knew the drill. I asked the doctor how big she was and he guessed 8 pounds. I thought he was joking so had my husband go with her to be weighed and checked. She was 8lb. 3oz. When we had her blessed, much of the ward, and a high school boyfriend who happened to be there (weird) asked if we adopted her. I did proceed to tell them how hard I worked for her. She definitely was ours. Mikele is in Florida on an Internship at Disney World. I will be talking to her today, as she calls daily still. And will catch her up with your Lily. She has changed from EMT/Nursing to Criminal Justice/Forensics Science. They guy she's waiting for is thinking of doing the same. Lily is beautiful!

  7. I know exactly how hard it is! I have a 5 month old girl who has spina bifida and almost 2 months ago she had a decompression done as well her time in the hospital was about 3 weeks though. Its such a tough thing to go through and im a young mother at 22 so its been even tougher but just knowing there's other peoole out there that has to go through it and to see the progress they are making makes me realize everything will be ok. Im glad she's doing good!!

  8. I miss seeing updates from you, but understand the burden of posting on facebook is to you. I just pulled this up from my "memories" for today, and don't know if you read this or not. My prayers are consistent and steadfast for your family. Me ke aloha pumehana, karyn spencer