How did I get so lucky....

As a mom with a special needs baby, I know how important it is to have lots of support. I get support from my loving husband first and foremost but also from our immediate and extended family, and great friends. On top of that I am a part of several SB support groups, a few of which are online, or Facebook groups. For the most part the posts on these sites are encouraging and uplifting. However, the other day there was a sad exception. A woman who has an 20 something son with SB posted on the site. I won't quote but I will paraphrase. She wrote that she felt most new parents had too much hope, and for this reason she was concerned. She made it clear that there was little hope for our children, that it was a long hard road, that our marriages would fail, and before long our family and friends would abandon us. I was appalled that she had posted this on a support group website. I was disheartened, not because I believed what she had to say, but that others would read it and lose hope. I shared this post with Corbin and he responded with a new post to the site. It was such a beautiful post that I wanted to share it on our blog. So here it is.


"Forgive the direct and pointed nature of my comments...we are all parents of these beautiful children and each and every one of us deserves respect...and I give it to all of you freely. My intentions with regard to my comments on a few discussions here was to point out that discouraging talk is not helpful. I welcome stories of heartache and challenge...I know the realities of what our life may be like...and I don't mind preparing for it by utilizing the valuable insight from parents who have gone before me. What I don't tolerate quietly are comments directed at people here who may be vulnerable...scared...seeking hope and encouragement...I won't quietly tolerate comments that are entirely focused on the incorrect notion that hope is a wasted effort...that anticipation of a wonderful and happy future is a futile endeavor...that our hope makes us unrealistic and foolish. I won't stand for that because it is a lie...nobody knows for sure what anyone else here will face. But I can attest to you new parents...or those expecting...that life will only get better from here on out if you keep your focus on the positive...there is hope...your kids can and will make you happy...my daughter is the light of my life...and I celebrate every milestone...every small success...just as I did my other children. You DO have a future that is as bright at you choose to make it. Will you be tempted to get discouraged...to feel sorry for yourself...your circumstances...like some here have? Of course...but you will be as happy and fortunate as YOU CHOOSE to be...circumstance doesn't decide that...you do. I can tell you that our little girl is the most perfect child we could have ever hoped for...she is just packaged a little differently...we could never have imagined being so happy...and she is one of the toughest cases our providers have ever seen! 7 major surgeries in 16 months of life...much of what can go wrong has...my wife has revived her multiple times doing CPR. I tell you this so nobody thinks we're a family with an "easy" case...we aren't...but our life is bliss. Is our life what we "planned"? No...it's better. Our life may seem like chaos from the outside...but from where I stand...the view is clear, beautiful, and thrilling. I don't spend one moment wishing for something else for my life...I spend my time marveling in the truth of what it is...and what it may become thanks to this little girl. We choose to be made better through this blessing...some choose to be made worse. Truthfully...the sky is the limit for you. So please don't be down...don't fall victim to self pity...or worse...try to find a false comfort in bringing others down to join you in your self prescribed misery...don't speak of your child but with love and admiration...after all...they have SB...we don't. Don't speak of your life as if your state is static and the condition of your existence unalterable. Life is dynamic and can improv with every moment...so rise to the occasion...you have a beautiful child...which is so much more than many can say for themselves...and whether they grow to be independent and allow you your freedom...or whether they remain with you...they can be your freedom. Try to find joy in the journey and in the prospects of happiness...and you will see that above anyone else you know in this world...you are the most blessed. I am sorry some have taken offense at my comments in defense of hope...but I don't apologize for what I have said. I won't be back on this site...as my passionate feelings sometimes offend those with fragile sensibilities...and the last thing I want is to hurt someone...even if they are those who go about hurting others...but at least now you know my intentions were honorable and heartfelt...my wife may visit from time to time so please respect her thoughts and feelings should she ever decide to comment again. She was turned off by the attack on hope...but it seems those people are few and are confounded quickly...so long as people refuse to stand for those who spread or defend the spreading of hopelessness...I am excited for every one of you for what your future may hold. God bless. ...cheers, Corbin"


I really do feel I am lucky. Actually, I don't believe much in luck...I am truly blessed. Blessed to have Corbin and blessed to have the beautiful children that we have.

here we go again....

A-lot has happened since we last blogged....May rolled around. It was time for Lily's Eye muscle surgery.  That was an easy one.  Lily's eyes were crossed, she looked at us though one eye at a time, but never both. I was so anxious to have this surgery done.  One I actually looked forward to.  The surgery came and went.  Lily's eyes were straightened out, but not to the degree I had hoped.  I still thought they looked crossed.  I admit I was disappointed.  I just had really high hopes.  You would think I would learn my lesson.  I know better than to have any expectations.  I don't mean this in a negative way.  I just mean...there is really no way to know the outcome of any of these things. Lily has by all accounts the best Pediatric Ophthalmologist in the Intermountain west. And yes, he did warn me that she may need a second surgery.

 

June rolled around and Lily continued with a very slow progression post-surgery, but we still had some major concerns.  We just felt in our hearts that something wasn't right.  Since Lily's Chiari decompression surgery back in January, we hoped for some improvement in her upper extremity strength among other small things. The Neurosurgery team was very concerned about Lily's "breathing episodes" (where she stops breathing when upset, passes out, loses her respiratory drive, and needs to be resuscitated with rescue breaths). After more deliberation, our Neurosurgeon felt it would be best to do another Chiari decompression surgery.  They had tried to be very conservative with the first surgery, and now felt a more extensive surgery was needed. I received the call on a Thursday, the surgery would be scheduled for the following Tuesday.  They wanted to get it done quickly since we had plans to move our family to Oregon.  This was 3 weeks before the semester started and Corbin HAD to be in Oregon, with or without our family.

Tuesday morning.  We showed up at Primary Children's Hospital.  Baby in arms.  Unwilling to let her go for the 5th time since her birth.  Knowing the risks of the procedure.  With our hearts aching, sending prayer upon prayer to God to please please get her though this okay.  Please let this be the right decision, please let her benefit, please give us the strength we need to let go of our little one as we hand her off to a team of anesthesiologists, nurses, and surgeons.

Same day surgery....I know you....all to well.  As we sat in the waiting room with all the other parents with the same "deer in the headlights" look.  I glanced over to see the evil nurse.  You remember her from our last surgery.  When it was my turn to check in, I made sure to request that she NOT be our nurse.  They were kind enough to accommodate us. I'm sorry if you were one of the other patients that day, and got stuck with the mean nurse practitioner. I honestly don't know how she has a job at a children's hospital.  We made it back....my genius of a husband requested that when they took her blood, that they also get a line in (this ended up being the only working line in the end). Lily is very very difficult to get an IV in.  We had nightmares from her eye surgery.  When she got out, we counted no less than 15 unsuccessful pokes in her hands, arms, legs and feet.  They ended up using her Jugular vein!  That's on your neck folks!  She hated it.  It was sad and painful.  Sadly, when we were called back to see Lily after the decompression a couple hours later.  We saw that they also had her line in her Jugular.

The surgery itself went well.  They "decompressed" all the way down to her 6th cervical vertebra. She was in a lot of pain post-surgery.  They kept her pretty well medicated.  Unfortunately the narcotics they were using to manage her pain were causing her have problems breathing.  Lily looked very pale and was having problems breathing.  After one night in the neuro-trauma unit.  We were moved to PICU.  They were able to figure out the right cocktail of medications to keep her pain under control and also keep her breathing and by the end of the next day we were back in neuro-trauma.  Lily continued to improve and finally on Friday we were able to take her home with us.  Although she remained in a lot of pain we were happy to get her home.

It will be several months before we will know if the surgery actually did help.  However, we noticed that when she opened her eyes, they were straighter.  Perhaps even straight enough she will not need another eye surgery.

The back of Lily's head and neck

Lily's room on Neuro Trauma 

Lily and Daddy's hands

Heroes...

Timing can be ironic...timing can be funny...and sometimes, sometimes timing is just miraculous. First of all...we have been doing very well. We have settled into our new "normal"...and though from the outside looking in...our situation may appear chaotic at times...we absolutely LOVE our life. Just as Wyatt and Skylar did...Lily has proven since the moment we found out she was coming to our family...she has proven to be exactly what our family has needed to feel whole. She is perfect. She is the light of all of our lives. She makes things better in every way...complicated...scary at times...but with her divine ability to touch peoples hearts and radiate love...we are better...the world is better...with her in our family. Kenz and I often watch our children in awe...amazed at the grace we've been extended as imperfect people...entrusted with some of the most noble and important souls ever to be born. We can't imagine our lives without each of them...or each other...and that is why FAMILY is the heart of God's plan. Family drives us to be better...to stand and fight...to kneel and be grateful...to extend ourselves far beyond what we believe is our normal capacity for good...a capacity only a loving Father in Heaven knows we possess.

I am an imperfect man...so much so that I often wonder how on earth my wife ever accepted my attention and affection...how on earth God ever thought it wise and allowed these children...Wyatt, Skylar, and our little Lily...to call me "Daddy". I'm simply amazed.

We have been very blessed to make the acquaintance of many wonderful people. We have...because of the incredible donations of so many...been able to afford to take Lily to some very special therapists...who have truly worked some miracles for our little girl. Her verbal growth has been astounding...her upper body is getting stronger and more coordinated...and we have seen movement in her legs that we never thought would be possible. None of this...in and of itself...will mean that Lily will be without significant challenges in her life...however...it does confirm what we already knew...Lily is a fighter. She will accomplish ALL that she desires to for good. Her body and mind are strong and heaven is the limit.

I have dedicated the past 6 years of my life to bettering myself for the sake of my sweet family. For me...bettering myself means learning to help other people in their times of need. That is why I'm a paramedic...that is why I got my degree...and that is why I'm headed to PA school in June. People often associate the word "hero" with those who put themselves at risk to help others. This week...I had the privilege of teaching a Tactical Combat Medicine course to some police officers and SWAT operators from Utah and Idaho. It is always a wonderful experience working with true heroes every day...striving to emulate and maybe one day be counted among them. After class on Wednesday evening...I went straight to the Sandy Fire Station to recertify my Healthcare Provider BLS/CPR/AED. I take my training very seriously...because I know just how important it is and how...when lives are hanging in the balance...when knowledge and courage must come together...and action is the only currency...training is everything.

Little did I know...at the same moment I was giving practice rescue breaths to a plastic infant...heroes in my home...were saving the life of my own little girl.

Lily has...on a handful of occasions...cried herself unconscious. She exhales during a crying fit and doesn't breath for so long...that she actually passes out. This is not entirely uncommon for kids...though it is rare for children as young as Lily...and almost all children start breathing again on their own. One instance...a month or two ago...she passed out...and just as I was about to give her a quick rescue breath...she started breathing again.

Wednesday night was different...and there was no medic in the house...just a mother, brother, and sister, grandma, and aunt...who did a better job than I ever could have...saving our baby.

Miraculously...Kenz trained Wyatt on how to call 911 and what to do in case of an emergency on Tuesday night...timing:)

Wednesday night...Lily started crying and lost consciousness...only this time...she didn't start breathing again. She turned blue...then gray...and as terrified Wyatt and Skylar looked on...my hero wife...without hesitation...took action. It's amazing...she has NEVER done CPR or rescue breaths on a child...much less her own...and it's been over a year since her last CPR training...yet she did everything...and I mean EVERYTHING right.

She laid Lily on the flat and hard ground...she looked for signs of breathing and felt for a pulse. When she realized Lily wasn't breathing at all...but did have a pulse...she looked to Wyatt for help. Wyatt, sobbing, said..."Is she dead Mom? She looks dead! We're not going to have a baby anymore!" Kenz calmly told him to run next door and get Gamoo (Grandma Diane) and tell her to come quick...it's an emergency...Lily isn't breathing. And with that...my little boy...my little hero 6 year old took off! He ran as fast as he could next door. Kenz heard him screaming and banging on the door as loud as he could. "Gamoo...hurry...it's an emergency...Lily's not breathing!!!" He yelled through his tears. As soon as my mom came to the door...he grabbed her hand and ran...almost dragging her...back to our house. All this time...Kenz...without missing a beat...began rescue breathing for our baby. She plugged her little nose...put her lips over Lily's and...every 3 or 4 seconds...Kenz gave her a little breath. Kenz noticed almost immediately that Lily began to pink up...but still wasn't breathing on her own. So Kenz kept it up for almost two minutes. My mom called 911 and within a minute or so...the first officer arrived. Just as he did...Lily started to breath on her own...but it was labored and irregular. Kenz kept up the breaths to help her along. Then...she whimpered a bit and after a few minutes started to come to. She was a bit lethargic but began acting normally within a few minutes after that. Wyatt and Sky were crying...as they thought their baby sister was dying. My little sister Kelsey came over to hold them and comfort them...but Kenz just kept doing EXACTLY what she needed to...in perfect sequence. She ignored the panic and terror...something I have felt many times but could not imagine feeling with regard to my own children...and she saved our little one...who...for some reason couldn't start breathing again on her own.

My mom later told me how impressed she was with how calm my wife was. Kenz held it together until later...until all was well...

Kenz called me...and I rushed home...breaking a few laws on the way. I walked into my home...grateful for the Sandy Fire Paramedics and Police Officers who came rushing to help...grateful to find my wife...my hero...standing there holding my sweet breathing baby in her arms.

The medics assessed Lily...and found her to be stable. We felt confident that we could get her to Primary's safely...and we did.

After a few hours of observation...we were allowed to bring her home. We wanted Lily home in the morning when her brother and sister woke up...to help them overcome this traumatic experience.

We have some tests scheduled in the coming weeks to see why Lily has such difficulty recovering from an apneic spell on her own...but she has been fine since...clueless about the years she sporadically takes off her parents lives:)

Wyatt and Skylar said prayers that night...as we all did...but Wyatt said "Please bless Lily that she'll keep breathing...please bless that she won't die." I sure hope that prayer is one that can be answered in our favor. It's a hard thing to live life with so many reminders around you...of how fragile it can be. Especially when those reminders are our little ones. My dear friend Parley said something profound to me. He said, "Lily is such a special soul. I believe she still lives between worlds. Perhaps that's why, when you're in her presence, you feel such a calm and sacred spirit." I think you're right Parley. We just need her to fully commit to living here...with us...for many decades to come.

I am a proud man. I've never been more impressed with a person in my life...than I have been with my wife this past year and a half. She is the most wonderful mother I could have ever hoped for. Her children have all her traits...and that is why they too...are examples to me. I live in a home full of heroes...and I'm not talking about me. They were there when I wasn't...they did what I couldn't...and I have never had more confidence in the genuine goodness and divinity of humanity...than I have now...watching my dear wife and children. I don't think I could live without any member of my family...and because of my wife and little ones...I don't really worry about that right now.

I thank God for them every second of every day of my life.


 

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)

We'll all float on

This afternoon as I drove Wyatt to Kindergarten the song "Float On" by Modest Mouse came on the radio.  As I listened to the lyrics, I realized that this song sort of fits how we need to face our worries.  "Bad news comes don't you worry even when it lands, Good news will work its way to all them plans". Seems like all we have been getting is bad news followed by more bad news.

Let me catch you up.  It all started with Lily's "Pirate cry".  No this is not a clinical term.  This is just how we first noticed Lily had right sided facial weakness because she only closes her left eye when she cries.  Then when we went to the Pediatric Opthamologist for Lily's eyes, they diagnosed her with "Sixth Nerve Palsy". Sixth Nerve Palsy basically means that the 6th cranial nerve which innervates the lateral muscle of the eye which works to pull the eye outward is weak, so she stays cross-eyed most of the time.  It is very hard for her to pull her eye outward so mostly she just turns her head to look.  The 3rd problem we noticed was that she has upper trunk, arm, and neck muscle weakness.  We knew that Lily would have some physical setbacks and we didn't expect her to meet physical milestones like our other kids. However, what we found was that she plateaued with her development. Although she is 6 months old, she has just barely gained some head control, her arm strength is minimal, and she doesn't open her palm and grasp objects.  We are obviously concerned. So when we went to Primary Children's Hospital last month for her check up we voiced our concerns with the Dr.'s.  They were also concerned and ordered an MRI.  I tried to stay positive, I really just thought it was a shunt problem or a Chiari II problem....if only.

Now it is a month later, the result of the MRI showed that Lily's cerebellum is growing at an unusually fast rate.  It has basically tripled in size since her first MRI at 2 weeks old.  Because there is only so much room in that area of the brain she has significant compression of her brainstem.  So while the news was "bad news", I guess you could say that some "good news worked its way into all them plans".  We did, at least, have an answer as to what was causing all of her symptoms.  The facial weakness, neck, trunk and arm weakness, 6th nerve palsy, are all related to this compression of her brainstem. The really crappy news is that the Dr.'s at Primary's have never seen this before....like...ever!  So while we have some answers, we have more unanswerable questions.  We feel like we are pregnant again facing an unknown.  We find ourselves wishing "if only she just had Spina Bifida".  Again I find myself singing "Alright don't worry even if things end up a bit too heavy We'll all float on alright".  Maybe if I keep singing it and telling it to myself, it will happen.  Truth be told, we are worried.

The fantastic team of Pediatric Neurosurgeons at Primary Children's has at least come up with a plan.  No, they have never seen this. No, they don't know what is causing it. No, they don't know if she will regain nerve function. No, they don't know if her cerebellum will stop growing. But they do feel that performing what is called a "Decompression Surgery" will benefit her.  So back to Primary's we go. It's just another brain surgery after all.  We are at peace, at least, that this is out of our hands.  The 4 neurosurgeons are all in agreement.  They feel that the risk is minimal and that there may be benefits to performing the decompression.  Monday the 14th, we will go to Primary's and they will remove some bone from the interior of Lily's skull and some bone from her vertebrae and hope that it opens up a little more room for her brain.

Did I mention we are terrified?  Decompression surgeries were common 20 years ago, but are rarely performed anymore.  Our surgeon hasn't performed one on a SB patient for 15 years. We don't have any expectations which makes it harder. I just wish there was someone somewhere that has been through this that could tell me some good news. A story of a positive outcome.

Again Corbin and I wish to tell you all how much we love you.  We thank you for your continued prayers.

http://youtu.be/CTAud5O7Qqk