Monday, October 31, 2011

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

Wednesday, October 5, 2011

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