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

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. 

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

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
xoxoxoxo

Point Dume, Malibu, 4 days prior to hospitalization.  

We did it!

Finley is home!!!!  After 88 days in the NICU we are home.  So many ups and downs since my last post... several times I had planned to update on the details of his progress from a medical stand point, but in the back of my mind I was thinking that we were close to going home and I didn't dare put that thought out into the universe!  We had learned that the moment you assume an actual discharge date, home becomes a far off dream.  We started calling home "the H word"!  Fin is a miracle... as I'm writing this post, I'm going back through some pictures and I am in awe of his strength and determination.  The day he was born, Fin was in bad shape.  His birth was so traumatic.... in the first minute of his life, he wasn't breathing, had no tone or color.  His omphalocele had ruptured leaving his liver and intestines completely exposed.  His first day of life, he endured major surgery to place his organs into a silo.  You can't see his organs in the silo, but they are in there!

In the days that followed, Fin's organs were slowly squeezed into his tiny abdomen.  He endured paralysis for several days and although he was on high levels of pain medication, I am sure he felt the pain of the daily assaults on his body.  Fin was paralyzed in this picture and the strings tied around the plastic are from each time his organs were pushed down into his abdomen.  When we started they were way at the top!

As I write this, I'm watching him sleep.  He's next to me in our bed, in our bedroom, in our HOME and all is right in our world!  We have a long road ahead of us and many challenges to face.... Fin still gets most his milk through his NG tube and his wound is still closing.  His wound vac is still in place, we'll probably have that off in the next few weeks.  We have an occupational therapist coming to the house 3 times a week to work with Fin on feeding by mouth.  We are confident that we will reach our goal!  I haven't written much about his belly wound in the past as it has remained consistent in it's progress, but I feel the need to post a picture here in order to emphasize how amazing our boy really is and to show how much he has been through.  This picture is from last week.... trust me when I say that it looks great!  It has consistently gotten smaller and flatter and the pink underneath the yellow mesh is fresh skin growth.

I am in awe of the healing power of the human body.  His surgeon performed a miracle getting his organs where they belong and Fin did his part too!  The wound vac has  helped so much too and the home vac is very portable and keeps us mobile.

To say we are happy he is home is such an understatement.  This experience has taught us many things.... the importance of being in the moment, being proactive while accepting what we can and cannot control and above all, patience and unconditional love.  Fin got to feel the sunshine for the first time on Saturday.

We will be enjoying many more days in the sun as Fin continues to heal and grow.  We are so very grateful to all of our friends and family for all the loving support.  We are forever grateful to all the doctors and caregivers at UCLA and especially to our primary nurses.... if any of you are reading this, we could not have gotten here without you and we love you so very much!!  

Even though he's three months old, in some ways it feels like day one!  I'll continue to update on Fin's progress at home.  Thanks for reading... we are certain that all of the positive energy we received from all of his fans helped him heal and ultimately come home!

Much love to all,

Finley, Daria & Rick

xoxoxo

Finley's roller coaster

Hello everyone! Well, it was a rough week for our super hero. At the moment, our little Fin is on the upswing but a big scare last week took us back a bit. Things were progressing nicely until a week ago Friday when he had some blood in his stool. Given the fact that many omphalocele babies have GI issues, this may or may not be alarming, however, at the time there were several other babies with blood in their stool and a couple of cases of NEC (Necrotizing Enterocolitis) in the NICU. NEC is an extremely serious condition in which poor blood flow to the intestine causes the tissue to die, bacteria builds up and the intestine can perforate, spilling infection into the body. The docs decided to err on the side of caution and treat Fin aggressively. They immediately stopped his feeds, put him back on TPN, ordered xrays and began 4 different antibiotics. His entire world turned upside down within an hour! He was moved back into a warmer bed and IV lines were placed in both arms - he was NOT happy! The xrays were difficult to read given his anatomy and the neonatologists, radiologists and pediatric surgeons couldn't quite agree on whether or not he had NEC. Rick and I were scared out of our minds! We had a very rough weekend, Fin's blood pressure was sky high, the IV fluids gave him edema and he was generally just very upset! Then, they ran a cranial ultrasound to try to figure out why his blood pressure was so high, as they knew it was not his kidney since they had run every test in the book and determined that his kidney functions incredibly well. The ultrasound showed some excess fluid on his brain. They didn't warrant this an emergency but they wanted to do an MRI. Things just kept piling on for our sweet boy! Luckily, by the next day, the doctor felt that an MRI was unnecessary since the fluid was minimal and we know that he was not born with fluid on his brain. Since then, the fluid has gone down and we just continue to monitor his little head. So, after all that panicking, crying and stressing, we are much better!  

One bright spot through all of this is that Fin is off all oxygen support and doing very well!  One less thing hanging off his body and taped to his face!  We started his milk again on Saturday and so far he is tolerating nicely. Antibiotics finished last Friday, his blood pressure is better, edema is gone and his his little soft spot is much softer. His last xrays and labs were clear and we are back on track. His bowels are slowly moving again and so far, no blood. This ordeal was a pretty big setback for us in terms of finally getting our little man out of here, but we are just so relieved that it was not more serious!  

The big challenge now is feeding. In many ways we are starting over and our Fin is very cautious about swallowing his milk. We need to get him to the point where he takes all of his milk by mouth whether that be breast milk through a bottle or straight from the source. After all he's been through and having had some type of tube down his throat since the day he was born, it's a wonder he swallows at all so we give him lots of credit!  

Rick and I continue to be amazed by our little boy and we will continue to be as patient as Fin needs us to be. He is so very strong and we know without a doubt that we will get through this and that we will bring him home at some point.  Go Finley!  

Thanks as always for all the love, support, prayers and well wishes... It really does make a positive difference!

Love to all, xoxoxo Finley, Daria & Rick

No more tube!

We have learned not to count our chickens before they're hatched so... I waited a week to let everyone know that Fin is off his ventilator and doing great!  He is now on high flow oxygen through a nasal canula but we are almost off of that now too.  He is having to work a bit at his breathing due to the pressure that is put on his lungs from his organs below, but he is stronger everyday and everyone is very confident that he will not have to be re-intubated.  Here he is!

He is a very happy boy and Rick's and my stress level has gone down a notch!  This was a HUGE step.  In addition to this change, he is just about off the narcotics... we had a rough couple of days of withdrawals but our incredibly strong boy made it through with the help of a medication change, some very patient nurses and mommy and daddy of course.  

Now, on to the big challenge - the feeding.  Two days after his breathing tube was removed, we started on breast milk through a bottle and he did great!  It was as if he'd been doing it from the beginning.  I was completely amazed!  We had a small set back the next day when he stopped wanting to swallow, but we figured out his throat and nasal passages were swollen and this was causing him some obvious discomfort. It took a day to get him back on track and it's slow going but we are working at it.  Mommy and Fin are practicing our breast feeding and he is doing well, but he still has to take most of his milk through the tube in his nose.  It's so important for him to gain weight so the tube feeding is necessary for now.  The goal is to get him off the feeding tube and we have every confidence that this will happen soon.  Patience and dedication!!

We are in the home stretch (fingers crossed) and we cannot wait to bring him home.  On the bright side, we can hold him whenever we want!  He is developing such a personality.... he smiled for the first time just the other day and I just about fell over.  I called the nurse in and she came running thinking something was wrong and I just stood there and cried and said, "he smiled at me!"  Fin smiling = mom's heart melting.  

Thanks as always to family and friends for all of your loving support!  We couldn't get through this without you... the positive energy and all the love and well wishes has made such a huge difference to our family and we love you all so much!  

Love, xoxoxo Finley, Daria & Rick