Sunday, September 23, 2012

Finley 14 months : Unveiled

Finley is, at times, a tough nut to crack.  He shows us what he wants, when he wants and while it can be exciting at times, it's also like holding your breath… it's painstaking and methodical, but when you let it out it feels so good!  This is life with Fin.  We have our ups and our downs, we have our plateaus and our breakthroughs.  The good weeks are the breakthroughs and the plateaus are… well… a monumental act of perseverance and patience!

Medically speaking, we are in a good place.  The things that might have gone wrong by now, have not and so we count our blessings.  From a developmental standpoint, Fin is in catch up mode, but we try not to look at it that way.  It has become apparent that his traumatic beginning has not only made him tough and resilient, it has also allowed him to develop at his own pace with no one hanging milestones over his head.  Because, really, that would be unfair.  

Fin in the "ball pit" with his buddy, Parker.
He is surrounded by people who encourage and teach and celebrate all the amazingness that is FINLEY.  He unveils a little bit more of himself every day and it is truly a wonder.  With that said, here's what's been going on in Fin's life lately:

He turned one August 1st!  We had a small gathering here at home and he enjoyed all the attention.  There was a time when having a lot of people around would have been difficult for him, but he handled it with no problem.  Thank you to all our close family and friends who came to celebrate his big day!

Fin is now officially a "butt scooter".  He has never been a big fan of tummy time and although we work daily on weight shifting and crawling positions, Fin has decided to hell with all that, he's super comfy on his butt so let's scoot!  We have the MOST wonderful Physical Therapist EVER, and we are still working towards crawling and walking, but Fin decided that he couldn't wait to be mobile.  He's now a total maniac, scooting all over the house, exploring all the nooks and crannies that previously he could only see from a distance.  To Lori, our PT, we can't thank you enough for all your love and dedication! 

Fin at physical therapy with Lori, PT extraordinaire.
 Now, on to eating.  Sigh.  Deep breath.  Let's just say, we are working on it.  Fin is very interested in food, he will play with food, allow food on his face and recently he will pick up a spoon, dip it into some puree and actually feed it to mom and dad but he's not really loving having food in his own mouth.  Oh, it's a long story.  Suffice it to say that with all the trauma he's suffered in his throat (intubation, NG tubes) coupled with such a delayed start at actually trying to eat by mouth, he has some pretty serious oral aversion.  Add to that his problem with retching and gagging (nissan fundoplication, g tube, volume intolerance) and that equals pretty much no eating by mouth.  Thankfully, we have an amazing team of therapists that are dedicated to overcoming this problem.  For now, he is 100% g tube fed.  We've gotten used to it and although we get some strange looks sometimes, I tube feed Fin at restaurants, parks, the beach… wherever an oral eating child would eat.  We don't let his g tube stop us from doing anything. 

Fin and Daddy rockin' the beach!
 Complications aside, Fin is doing what every other child his age is doing… he's growing up!  He's learning to move his body, to socialize, to verbalize, to let us know what he wants and to eat.  GO FINLEY!!

To "Team Finley" - Thank you Lori, Clarisa, Michele, Dr. Rabizadeh, Dr. Shew, Lauren and Patricia.  We wouldn't be here without you. 

You talkin' to me?
Thanks for reading, much love to everyone!!

xoxoxo Fin, Daria & Rick

Friday, June 15, 2012

Life with Finley, 10 month update

I love my son.  My heart, my soul and my entire life is dedicated to his well-being and happiness.  Let's just get that out there right off the bat. I'm positive that anyone who knows me and is aware of how my son came to be would never question this - not for a minute.  
And, even having gone through a thousand hours of pain, worry, heartache, anxiety and fear I would not trade him for anything… and I mean anything because that would make him a different child and I don't want a different child, I want my Fin!  Ok, now that that's been established I shall move on to the raw reality of having a child with special needs.  And, no, he doesn't have special needs in the way that the average person thinks of as special needs.  He is not neurologically impaired and he's not, for example, confined to a wheel chair, so I do realize that there are many families out there who have it worse off than we do and I'm definitely sensitive to that fact.  However, I only know what it's like to care for my son and it's from that perspective that I write these words.

Fin is fed 100% via his gastric tube (g tube). At this point, he doesn't take anything by mouth.  Following his surgery to place his g tube and the nissen fundoplication to correct his severe reflux, he suffers with horrible retching and gagging.  Now, I could write a book explaining why he ended up with the feeding tube in the first place, but suffice it to say that it was and still is absolutely necessary.  His feeding schedule is relentless.  He can't tolerate large volumes of food so we have to feed smaller amounts more often.  That, in combination with his GI issues and poor weight gain has basically made our lives centered around eating.  

Fin, during a tube feeding.
I guess the best way to explain our struggles is to imagine a typical newborn.  A typical newborn begins eating almost immediately.  They exercise their natural inclination to suck and swallow and nourish themselves without hesitation.  Yes, some babies take a little longer to get the hang of it and some prefer different modes of delivery, but successful eating is usually the result and moms can pretty much go on about their lives not giving it too much thought.  In Fin's case, he was not able to try to eat by mouth until he was 7 weeks old… he was not even held until he was 6 weeks old!  His entry into the world was tumultuous and the first several weeks of his life were like a war zone.  His throat was literally assaulted with tubes.  Fast forward to 10 months of age and he protects his mouth and throat like a most sacred place.  His therapist calls this part of his body "hallowed ground".  If this post is going on too long, please hang in there, I get to the heart of things another paragraph down.  ;)

In addition to the feeding problems we also have some developmental delays due to his long hospital stays.  Again, imagine a typical newborn baby that comes home from the hospital a few days after being born.  In normal day to day living, this child is passed around from mom to dad, rides in a car seat, rides in a stroller and is placed on a changing table.  Normal movement that takes virtually no thought.  The vestibular system, or inner ear, is engaged and the child learns that "movement" is nothing to be fearful of and things like reaching, sitting up, crawling and then walking happen organically.  In Fin's case, these natural progressions did not happen organically.  He was literally on his back for the first 6 weeks of life and when he was able to finally be held, he was still chained to his crib with all the monitor wires and oxygen and wound vac tubes… he was either in his crib or held on my lap and that was about it until we finally brought him home at 3 months old.  Bottom line, he has some sensory issues.  He has gotten past his fear of sunlight (yay!) and now loves being outside. 

He's never really had too much trouble with touch or sound, but he's by no means typical in that regard.  His biggest problem is with movement.  Without going in to too much detail, he has 3 hours of therapy a week and we do structured daily play that helps him to strengthen his muscles and overcome his fear of movement and positional changes.  There was a time when we could only hold him in one certain way and now he tolerates different modes of being held.  He sits up beautifully and even reaches so far that he topples over, which is for him, is a huge milestone.  He rides in a grocery cart and sits in a high chair at a restaurant like a little champ.  These are things that don't really sound like that big a deal but for Fin, they are miraculous. 

Fin at Whole Foods... he loves riding in the cart!
 If you've made it this far and are still reading, now is where I get to the heart of what I'm trying to say.  Deep breath… being Fin's mom is hard and sometimes I feel a bit trapped! (Refer back to the beginning of this post where I talk about how I love my son).  Yes, in my case it's probably a bit harder than what the average mom has to deal with.  But, in general, being a mom is not all "running through a field of wildflowers with the wind blowing through my hair".  Even though Fin's milestones are different, it doesn't change the fact that all moms worry, "is my child verbalizing at the right time, is he crawling at the right time?"  etcetera etcetera.  When we go out, Fin is always so bright eyed and so visually curious.  People are so drawn to him and inevitably ask me how old he is.  He's quite small for his age, so when I say he's 10 months, I get an "ohhh really?"  Recently, I decided to lie and say that he was 6 months old, which I suppose is more believable for most people, and the response was "oh he's so advanced!"  Stupid, right?  I won't be lying about his age again, because in no way am I ashamed of where he is developmentally.  

Fin, in his '"tub o' beans" working on sensory therapy.
Considering where he's been and what he's accomplished, he's exceeded all expectations.  He's thoughtful and curious and ridiculously courageous.  His Occupational Therapist recently commented that he is an old soul.  Sometimes you can see it in is eyes that he's been here before.  Through one of the windows in our living room you can see a palm tree that sways in the breeze.  I catch him gazing at that tree all the time.  He looks at it with this very calm and peaceful look usually during therapy when he's being asked to do something that is particularly difficult.  Don't get me wrong, he's' not always calm, he struggles and cries and protests…. but in his heart he is wise, courageous, fierce and humble.  I use the word humble because I believe that he doesn't take anything for granted.  And that is one of the biggest lessons I have learned from him.  So, the next time you're worried that your child isn't on the highest percentile on the growth chart or hasn't quite reached that latest "milestone", remember to look in his eyes and see him for who he is.  Fin surprises me every day and when I look past the hardships, I'm able to delight in every little thing he does.  He's my perfect little rule-breaker and I wouldn't change a thing.  I love you, my little love bug. 

Monday, March 5, 2012

Home Sweet Home!

Best Valentines Day gift ever... Finley came home!  We've been home a couple of weeks now and Fin and family are settling in... again.  We were finally discharged after a MONTH in the hospital.  Here's a rundown of his adventures in the PICU... after 10 days on the ventilator (this is in addition to the 6 weeks he was on the ventilator when he was first born),  he decided to remove the tube himself and thankfully, after some serious chaos and a near "code blue" the docs got him stabilized and he remained off the ventilator with just a small amount of oxygen through a nasal canula.  We spent the next week recovering and waiting for the next hurdle.  He then had surgery to place a G tube (gastric tube) in his tummy, a nissan fundoplication to correct his severe reflux and an inguinal hernia repair.  Four hours of surgery all together!  Long story short, his recovery took longer than expected, we went back and forth on his feedings, weaning off the pain meds... it was tough, but Fin was tougher!!  

That last week in the hospital was probably the hardest.  Maybe even a bit harder than the time we spent in the NICU when he was first born.  He's so much more aware of his surroundings now and during that last week, he had just had enough!  Every time a doctor came in the room he would just start crying... he got so tired of being messed with and poked and prodded.  By the time we got out of there, he was a bit of a nervous wreck just like his mommy!  But, I'm happy to say that after being home for almost 3 weeks, our little man is flourishing!  

He truly amazes me on a daily basis.  I've learned not to worry about typical milestones and growth charts because Fin is a special baby with his own ideas about when he's ready to do things like rolling over and sitting up.  The moment I start to worry about his progression, he will do something to remind me that all I have to do is be patient, wait and watch.... something miraculous happens almost everyday.  

I will never take for granted every little forward movement he makes because in my eyes, he has already climbed a massive mountain.  According to many doctors, we should have terminated our pregnancy... his omphalocele combined with other defects that were found on ultrasound led doctors to believe that Fin would either not make it or at the very least, would travel on a very rough road.  Well, here we are rambling down that rough road and Fin is leading the way like a true warrior!  

Rick and I want to thank everyone for all your kind and loving support.  It means the world to us!  Fin has fans all over the world... I know that he can feel the love coming from all of you!  Here's a cute little video of our super hero... please enjoy!

Love to all!  xoxoxo

Friday, January 20, 2012

Fin the Lionhearted - Adventures in the Pediatric ICU

Just when you think the waters are clear... early morning January 12th, Finley went into respiratory distress and stopped breathing.  Thankfully it happened right in front of me, Rick and I began CPR, revived him and paramedics arrived in a miraculous 5 minutes.  If your jaw is on the floor right now I would understand!  Ok, this is a long story and we are still not entirely sure what happened, there are many theories so I will try to keep it simple.  Due to his omphalocele, Fin's lungs are hypoplastic (small, fewer vessels and alveoli).  A simple stuffy nose/cold can impede his breathing much more so than a "normal" baby.  Incidentally, this information along with some other findings would have been VERY helpful for Rick and I to know prior to this, but that is a story I won't go into here for fear of ranting.  One thing we did and do know is that Fin has fairly severe reflux.  In the days leading up to this event, Fin's reflux seemed to worsen causing him to wheeze and sound froggy.  With reflux and an NG tube there is a danger of aspiration, which can obviously cause serious problems, so I took him to his pediatrician and was told his lungs were clear, but we sent him for a chest xray just in case.  We were told his xray was also clear.   I took him home with confidence, but a few days later he developed a runny nose.  After a phone call to the doctor and an appointment set for the next day, I continued to take his temperature - no fever - and just tried to soothe him so he could sleep.  As the night went on, his breathing continued to become more labored and Fin was not a happy camper.  At around 4:30 AM, at the tail end of an NG feed, I decided to give him some Tylenol.  Here's where things get crazy.  What we think happened is that Fin "vagaled".  This happened in the NICU many times and it's kind of confusing to explain.  Basically it has to do with the parasympathetic nervous system and the sympathetic nervous system and what happens when the vagal nerve is stimulated.  Fin is more sensitive to this given that he has had something down his throat since the day he was born!  Suffice it to say that the perfect storm was created and at that moment, Fin stopped breathing.  Had we known he was vagaling, we may have handled the situation differently, but in the absence of monitors, all we knew was that he wasn't breathing and his color drained.  A parent's worst nightmare unfolded and panic followed by action ensued.  After what seemed like forever, he took a gasp of air.  Paramedics arrived minutes later and off we went in the ambulance to the ER.

In the ER
Fast forward a week later and we are still in the Pediatric ICU (PICU).  Why you may ask?  Well, Fin wants to know too!  He has been on a ventilator this whole time... the dreaded tube is back!  He does have a viral infection which may have been brewing for longer than we knew and he also may have been "micro-aspirating" from his reflux.  That, in combination with his hypoplastic lungs means that he still needs breathing support.
In the PICU, day 3, still so puffy from all the fluids and a blood transfusion.
The good news is that all his other systems have basically recovered and his brain activity is normal.  (Hallelujah!)  We are working hard to get the fluid off his lungs, clear his infection and mucous plugs and get him extubated.  He has to be restrained and sedated because our little super hero with the heart of a lion is fighting that tube every step of the way!  I really can't put into words how difficult this is to watch.  To say that it's hard not to blame myself for what happened is an understatement.  To say that my heart is not broken because my sweet boy is back in the hospital, restrained in a crib and not in my arms would be a lie.  The moment I wish things could be "normal" I feel terribly guilty for having such thoughts because Fin certainly didn't ask for any of this!!  I have such a hard time with the word "normal".  No, Fin is not normal compared to other babies his age, but he is normal relative to what he has been through.  A good friend of mine suggested I look at Fin as a "rule breaker" and I love that.  If things were any different, he wouldn't be my Fin and I wouldn't trade him for ANYTHING.  This child has taught me more in 5 1/2 months than I have learned in my lifetime.  He chose me to be his mom, so I have to believe in my heart that I can handle this.  A quick word about Rick... Fin couldn't ask for a better dad.  He remained calm during a time when I was frantic and that's putting it mildly.  When the paramedics were suctioning Fin and giving him oxygen in our bedroom I turned to Rick and said "you saved our son's life" and he truly did.  Now I'm going to soap box for a minute.... if you don't know infant/child CPR, TAKE A CLASS!!!  Our attempt was clumsy at best, but it worked. Thank you to Karen, our friend and one of Fin's primary nurses in the NICU.  She taught us what to do and she was in the room with us that night.  It's something you never think you will need to use but you never know!

One week in, doing better but wants out of this crib!
Hopefully, the next time I blog will be from home.  It's funny because I had meant to update sooner because things really had been going well at home prior to this, so please send us your good thoughts/prayers/vibes for a speedy recovery.  I know it helps!

Thanks for reading and thanks for all the kind love and support.

Love, Fin, Daria & Rick
Point Dume, Malibu, 4 days prior to hospitalization.