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

Holding Finley for the first time!

Hi again everyone!  Fin and I had a huge surprise this morning... when I walked into the NICU our wonderful nurse told me it was time to hold Finley!!  He is still intubated and I was told how strict the neo-natolgists are about holding intubated babies so I asked her what had changed and she said simply, "it's time and you both need it."  The doctors were convinced we could handle it and so after some tearful hugs, they placed him against my chest, skin to skin and we sat and rocked for 2 1/2 hours!  Rick came to the hospital as soon as he found out what was going on and the three of us enjoyed some wonderful time together.  What a difference a day makes!  

5 weeks old!

Hello again family and friends of Finley!

We hope all is well with everyone and that you're enjoying the holiday weekend.  Here is yet another update on our brave boy, Finley... he is doing great!  We are still a little way off from coming home, but he is making good, steady progress.  A few things have changed, number one being his eating or "feeds" as they are called in the NICU.  Without going into too much detail, Fin's tummy loves breast milk!  He has had no problem digesting and eliminating his milk and we are now at full feeds, no more TPN (IV nutrition).  He had no setbacks with his feeds which is a HUGE deal for him.  The fact that only 5 weeks ago, a good portion of his organs were on the outside of his body and now, not only are they inside but are functioning correctly, is beyond amazing and a credit to our sweet boy and his wonderful surgeon.  

They will continue to up his feeds accordingly and the next step is to either fortify them for additional calories or to compress them which means that instead of a continuous feed like he is on now, he would receive larger portions at regular intervals.  He is gaining weight slowly and will be able to start attempting bottle and breast feeding very soon which leads me to the next topic..... 

It's the Bane Of Our Existence, our Arch Enemy.... The Ventilator.  I'm kidding, it's really not, however, we just want it out of him!  Now that he is so much more active and alert, he just HATES it and lets us all know it.  The constant coughing and suctioning and worrying about the condensation in the tube going into his lungs.... it will be a very happy day when it's gone.  They are slowly weaning him off of it as his lungs will tolerate it.  The problem is that his newly placed organs are still causing pressure on his lungs and so he is not fully able to take deep enough breaths on his own.  Again, without going into too much detail, suffice it to say that getting him off his vent is the number one goal right now and this week they are going to start to push him a little.  We have an ultrasound Tuesday to take a look at his diaphragm and we will know more at that point.  

The weaning of the fentanyl (pain medication) is going well.  We don't think he's in much pain anymore, it's a matter of dealing with the withdrawal symptoms.  It has gone much better than we had thought, he has had a few bad days but overall, not too horrible.  He is just about weaned off... to give you an idea, his highest dose was 7 micrograms and he is now at 1.  Almost there! Once he is completely off the drip, they will most likely give him spot doses periodically and then we are done.  

His belly wound is looking great, he still has the wound vac on and will for possibly several more weeks.  I have been pushing to get more info on this but it's difficult to get the surgeons to commit to anything concrete.  Our understanding is that the wound will "granulate" meaning it will close on it's own but we're not sure how long this will take.  The good news is that this process has begun and there is no infection.  

Fin is so alert and love lots of stimulation!  He knows our faces and voices, he loves looking at his mobile and his colorful rattles and toys and has started to reach for things.  He has a bed full of toys and things to look at and mommy and daddy talk and sing to him as much as possible.  He sucks on his pacifier really well, even with the tube in his mouth, which is a good sign that he will take to breast feeding.  The nurses continue to dote on him... he is a favorite around the NICU.  One doctor calls him the Famous Finley.  Am I bragging?  haha.  We can't wait to see his precious face once that tape comes off.... we are hoping for next week sometime, fingers crossed.  At that point, we should be able to finally hold him!!

Thanks for reading and thanks as always for all of your kind words and support, we can feel the love for our sweetest heart, Finley!  

More news soon, much love to all!

xoxoxox Finley, Daria & Rick

3 weeks old!

Hello everyone!

Our Finley is 3 weeks old now and he has made some amazing progress!  I had mentioned previously that he had a VSD (moderate size hole in his heart) but what I didn't mention was that his PDA was open.  The PDA is an artery near the outside of the heart that is open while in utero but should close following birth.  Fin's had not closed and it was affecting the efficiency of his heart and lungs.  The plan was to go in today and surgically close the PDA and later asses the VSD.  But, low and behold, following an echocardiogram yesterday it was discovered that his PDA was closed and the VSD is now miniscule.  Our little man took care of it all by himself!  Rick and I are so happy to have avoided yet another trip to the operating room and we're sure Fin is too!

With this change in his heart, the doctors are now able to begin to wean him down on his ventilator which is very positive.  We are also now weaning him down on his pain medication and so far, he has tolerated it very well, no obvious negative effects.  The surgery team is extremely pleased with his belly wound.... there is no infection, swelling is going down and it is healing nicely.  They have placed a wound vac over the wound which basically speeds the healing process and skin growth by inviting cytokenes and other beneficial cells to the site in order to encourage healing. Our goal over the next 2-3 weeks is to have him off the ventilator, off the pain meds and the wound vac removed.  We know better than to count on anything until it happens but we are hoping for this time frame.  At that point, we should be able to finally hold him!

Some of the best news yet.... today our beautiful boy got his first taste of breast milk!!  Well, he didn't get to actually taste it but his stomach did!  As of this morning, he began receiving breast milk through a tube in his mouth down to his tummy.  It's a continuous feed that amounts to 1 cc an hour.  Not much, but they have to get his stomach primed to be sure he can tolerate it.  So far so good!  He did great all day, even passed gas several times which was music to my ears because it means things are moving along down there.  They will slowly increase the amount as he can handle it.   Mom has plenty of milk!  :)

Overall, our little FIn is doing really well.  Aside from a little scare when some fluid from his tube dumped into his lungs and he turned purple (I could live the rest of my life and never see THAT again thanks very much), he is doing well and taking some very positive steps forward.  It's a slow process but Rick and I continue to take it day to day.... he continues to amaze us with his strength and his ability to heal.  We are so ridiculously in love with our boy and we wish that we could be in the NICU every minute.... it's so hard to be away from him even for a few hours but we remind ourselves that he's in very good hands and he'll be home once he's ready.

Thanks everyone for all your love and support and kindness.  It means everything to us!  More updates soon... love to everyone!  

xoxoxoxo Daria, Rick and Finley