Friday, June 29, 2012

{Getting Uncomfortable}

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It's so easy to be comfortable -- I think we all would agree.  I remember when we became parents for the very first time 8 years ago we had no clue what the heck we were doing.  I vividly remember bringing Madison home from the hospital.  We took her out of her car seat, swaddled her tightly in a blanket, took her back to our bedroom and placed her in the crib.  I remember Adam and I just stood at the side of her crib -- we had no freakin' clue what to do next.  

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After a couple of months it got easy -- we totally figured out exactly how to handle a two month old.  But then it happened, she changed.  Once again we felt like two fish out of water, we once again were looking for tricks to make it through the next age and stage.  Now that eight years has gone by we have except the fact that we will never figure it all out.

It so easy to be comfortable in life.  So easy to finally reach  that place where you fully understand and comprehend all that life has brought you.  But here is the truth -- if we choose to stay comfortable we will never move forward.  We will never fully be able to live out the life God has destined us to have -- a life of peace, joy and hope.

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This past year has been pretty darn comfortable.  Even with the addition of Jayden it just felt like a natural flow.  Yes, it was a big well thought out decision but we were so confident in the fact that we knew deep in our souls Jayden was our child we never even thought twice about calling him our own.

Things are starting to get a little uncomfortable around here.  Mainly because we feel a stirring up of something big -- something that is  just waiting for us.  We are feeling very similar to that first day home with Madison -- standing at the edge trying to figure out what in the world we do next with the journey and blessings God has handed us.

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Early this year we made the decision to leave the church that was our home for many years, which you can read about by clicking here.  But now it's time to take the next step -- we need to physically move.  Our new home church is a bit of a drive and by being so far away we are not fully able to be a part of our new family.  But that's not the biggest reason -- in case you haven't noticed our family has grown -- a lot.  And dare I say we're not so sure it's done growing.  

Madison is still at such a young age and we wanted to make this big move before she gets to connected with her current school, which also applies to Angela and Jayden.  This next home is gonna be our fifteen year plus home.  This is gonna be the home to help us usher in this next season of our life.

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What worries us the most is how people are going to respond.  A lot of blood, sweat and tears, not to mention money was put into this home for our family -- for Gavin, who sadly died the same day we moved in.  What I want to say in this -- we will be forever grateful to the people, to the community, that poured their hearts into Gavin's house.  Although  Gavin was never able to physically live in the house, it has been a place for Adam, Madison and I to heal and start a fresh new life keeping our little boy's legacy alive. Again, we will never forget the amazing gift this house was and is.  But with that said, it's time to leave.

It's so easy to be comfortable.  Being uncomfortable is not so fun.  But taking the first step is always the hardest -- we are trusting and believing that God is right on the other side of our crib, willing and able to guide us through this next step -- this next season.

Tuesday, June 26, 2012

{Post Surgery Update & Girl Time}

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Last Thursday we took Jayden down to Children's Hospital of Philadelphia where he underwent surgery to have his salivary glands removed and ear tubes replaced.  At the last minute the surgeon decided she had some extra OR time and that she would also like to remove his tonsils and adenoids.  After about four hours back in the OR we got to see Jayden up in the PICU and were told he did great!  He did spend the night on the ventilator but was able to wean off in the early morning.

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This was a new experience for us.  We are a DuPont family.  I love DuPont for so may reasons, but we really had a good experience at CHOP.  My only issue with CHOP is that is doesn't have that same family feel like DuPont simply due to it's massive size, but the facility was beautiful and we have no complaints.  The reason Jadyen has this done at CHOP was because his airway team in there.  Jayden may need some reconstruction of his airway in the future and CHOP would be the place to go to have that done, so we didn't feel like transferring him over to DuPont would benefit him.

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The recovery from the tonsils and adenoids was pretty easy.  Jayden doesn't swallow so the pain seemed to be relatively manageable.  The salivary gland part was a little more complicated.  Jayden's incisions were much larger then I expected -- about 1.5 inches on each side of his neck under the jaw.  He had significant swelling but seems to be getting much better.  The results from the procedure are not exactly what we had hoped for but we do see some improvement.

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Jayden has a tongue thrust thing that he does that drives us nuts. Angela did the same thing when she came home to us.  It's like he's trying to suck a binky only there is nothing in his mouth.  It's something that we can help him overcome but it takes time.  With Jayden this goes way beyond a cosmetic or social issue.  This creates lots of fluid in his little mouth.  Our ENT warned us that if we don't break this habit Jayden will exercise his remaining salivary glands to the point that they will create just as much oral secretions  as prior to surgery.  Ugh.  

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Because Jayden has no swallow or ability to protect his airway all this drool goes right down into his trachea and into his lungs.  Thankfully now that his trach is inflated with a small balloon his lower airway to his lungs is semi sealed off and protected but now we just see tons of fluid pouring out his trach stoma onto his chest.  No fun for Jayden -- no fun for us.  Now that his glands have been removed he is creating froth.  Not ideal at all.  Some of this just needs to settle out -- between the meds he is on and the recovery from all the procedures the result are somewhat clouded.  So we are just trying to stay positive and still hope for the best.

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Yesterday the girls and I had some much needed girl time.  Jadyen stayed home with our nurse and spent the day resting and recovering.  The girls  and I took a trip to the park and spent some time together -- no boys allowed.  I love my girls so much.  I love watching them interact.  I love watching the amazing love the share for each other.  I feel so lucky to call them my own.

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Thank you to everyone who supported and loved our family this past week. We couldn't do this without you!

Wednesday, June 20, 2012

{Surgery Tomorrow}

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Tomorrow Jayden will undergo a surgery that we hope will totally change his life. He will  have his submandibular glands removed as well as two salivary glands in the back of his mouth. These are the glands responsible for producing eighty to ninety percent of a person's saliva.  This is also known as drool surgery.

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When Jayden has his brain trauma at five weeks of age, in addition to all the other debilitating effects he also lost his ability to swallow, gag and most of his ability to protect his airway. This means that all the saliva that Jayden produces either comes out his mouth as drool and spit or it hangs out in his mouth and ends up going down into his lungs. When we initially brought Jayden home his secretions were bad but not unmanageable. After a few months it seemed like the medications that he had been useing to  control the amount of secretions he created was loosing their effect.

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When Jayden went under sedation to receive Botox to try to render those glands useless the team of doctors said they had never seen such bad aspiration. Literally -- saliva was pouring out his trach and trach stoma and he was needing constant suction.  By the way, that Botox procedure did not work and no results were seen what so ever.  Bummer.

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So that brings us to this surgery. We are hoping that the amount of salivia will be drastically reduced and Jayden will be able to breath much better and much safer and not require the insane amount of suctioning that he requires now. Life changing. 

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These past two weeks Jayden has made a crazy amount of progress. I think I've said before that Jayden often seems to be in his own little bubble -- not really interacting with the world around him.  These past few weeks he has really started to become more aware or at least show us that he is more aware. He has been doing some reciprocal play with Madison which is amazing to see. He is responding with excitement at being tickled and best of all he is now safely exploring the house and community in his walker!

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We have been useing his walker at the pool, allowing him to safely enter the zero entry pool, allowing his feet to get wet while keeping his trach dry. He has also enjoyed running around the splash pad playing with the spraying water features -- pretty much being a regular kid and doing normal almost three year old stuff!  

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He has been using his walker at church and family picnics. Basically we are trying to get him off the ground and in a more age appropriate posture. It's amazing how much better he interacts with his environment if he is upright. Makes sense right?

Can't wait to get him to the other side of this surgery and recovery. I know it's gonna be worth it but it's always hard to watch them go through discomfort. He's a strong kid and this surgery can't knock our little fighter down!

Friday, June 15, 2012

{doing this together}

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These past seven years have been interesting -- never a dull moment.  In the craziness I can honestly say that I am so very thankful for the life God has chosen just for me and wouldn't trade it for anything.  

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People often look at our story and see a sadness they couldn't imagine themselves ever having to endure.  I think people often forget one important piece -- the story is not over.  As a mother I hold on to the hope that this is just a temporary separation and live each day is great anticipation that we are one day closer -- one day closer to all being together again, and in the mean time we keeping living out our purpose right here, for this season and for this moment in time.

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Adam and could never thank you enough.  We are so grateful for our amazing family and friends both old and new, for choosing to stand beside us and be a part of our journey.  Yesterday I was amazed at the outpouring of support people had for our family.  It was so touching -- so beautiful.

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One of the hardest parts of grieving the loss of a child is that the rest of the world moves on -- they have to. But this often can leave a grieving family, who will grieve until eternity, feeling isolated and alone.  We feel anything but alone -- and we are so thankful.

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Yesterday was amazing -- difficult but amazing.  Feeling the pain hurts but is also brings renewed hope and peace.  It helps me to refocus and energizes me to push on and strive to be the women that God wants me to be -- the mother and wife he has destined me to become. 


Thursday, June 14, 2012

{Turning Six}

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I can't believe my baby boy would have turned six today.  I can remember the day he was born like it just happened yesterday.  After a difficult pregnancy my water ruptured at twenty eight weeks and I sat in the hospital for two weeks just waiting for my tiny baby to be born. I had no idea on that day that three and a half years later we would say good bye and watch his tiny white casket be buried into the ground.  

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His birthday's get my mind and heart wondering -- what would he be like today?   To be honest I have so much trouble just thinking of possibilities.  I guess part of that is because it just hurts so bad to think what could have been.  But then again -- could it really ever have been?  I feel so strongly in heart and mind that Gavin's life and death was meant to be.  As much as it hurts -- our little boy had an amazing mission here on Earth a mission to show the world what it means to find joy in suffering and show  mankind how to really truly live life to its fullest.  Just so much to ponder.

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I of course would love to catch just a glimpse of my sweet boy.  I have always hoped that people don't age after they die.  I don't really care what correct theology is -- I have my own ideas and I'm pretty sure God thinks that's just fine. I have shared before about how Gavin was buried in a red long sleeve tee which was more than two sizes too small due to his swelling in his last days and a pair of scull and cross bone leg warmers -- that was it.  No diaper, no undies -- just his cute little butt hanging out.  You can read more about that by clicking here, but it gives you an idea of what I'm picturing.

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I can just imagine him sitting in his wheelchair playing with his trucks and tools, maybe with his binky hanging half way out of his mouth.  It's kinda funny that I still see him in his chair right?  But I just have a feeling that God wouldn't want me to miss out on his first steps and just maybe the moment we meet again he will walk right to his mommie's arms.  I can almost feel the warmth of his skin. 

Almost.

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I know he's gone.  But let me tell you this.  He is so very alive.  I don't think I really need to explain how the legacy left in his three short years of life runs so deeply through our family.  It follows us around where ever we go -- sets us apart, defines our past and has helped set the foundation for our future.

Happy birthday my sweet little boy.

Tuesday, June 12, 2012

{living like it's their last}

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No one ever could have fully prepared me for the death of my three year old little boy.  Even up until the days before his death after his DNR was put into place and we were told that we needed to make arrangements for his body.  His body?  What the heck, my little boy was still right in front of me in fact just a few short weeks earlier he still had a faint glimmer of life still in him -- an occasional smile.  During his last hours I laid by his bed with my one hand vigorously stroking his blond hair and the other hand resting on his chest feeling each and every beat of his heart.  Even after I felt his heart stop for a brief moment and my adrenalin surged through my tired body I still was not able to fully grasp that my baby boy who I once had hopes for as far as the sky was about to leave me forever.

It's just something you can never be prepared for.

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This week our sweet Gavin would be turning six.  Did you catch that? Six years old.  It's both hard and painful to swallow and at times the pill feels so big that I'd rather just spit it out and pretend that it doesn't exist. 

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Out of all the death holidays, if that's even such a thing, this one is by far the worst.  What once was a day a celebration and extreme excitement -- that he once again beat the odds, proved medical science wrong and was a celebration of survival, is now a day of what if's.  I hate that that I only have three years to reflect on.  Hate it.  Most of the day's we choose to remember, like the day of his death and his time of diagnosis are days of reflection to simply remember and feel, his day of birth however is very different for me as his mother.  I birthed my baby from my very body. I remember the pain.  I remember the final push that brought him into this very world.  His birth is part of my existence -- it's something I just can't reflect on but something that I feel in the deepest part of my soul.  

With all this said I have learned this -- life can be taken away at any time.  Don't waste it.

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It's within all this pain that God has chosen to do some pretty mind blowing stuff.  I'm not so sure God caused all this crap but I do know that He has given Adam and I this ability to overcome -- to walk out of a pit so nasty and ugly and step out still alive -- still breathing and still willing to fight.

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With that will to fight came love like no other and with that love came two additional amazing children.  So now where does life take us?  I'm not sure.  What I am sure of is this -- We as a family live as if this is our last -- our last hug, our last smile, our last trip to the park, our last goodnight and the list could go on forever.

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God has given us so very much.  We as a culture are always looking for more, always looking way to far ahead.  Some of the biggest blessings are sitting on the sofa right next to us, maybe even asking the billionth question of the day, wanting us to watch their same dance routine that we've seen a million times and even though they try to convince us they've added a new move -- it looks exactly the same.  

Go hug your babies -- live like it's their last.  

Wednesday, June 6, 2012

{Chronically Cool Families and Turning Four}

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This past weekend little Miss Angela turned four -- and what a difference a year makes!  This year Angela was able to open her own presents and fully participate in her birthday fun!  Just so much fun to watch her little face light up. 

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I couldn't help but think back to the day of her birth just wishing I could have been there to hold and love her.  I'm reminded that it was because I wasn't at her birth that I am now able to be her mommie -- after all the very day of her birth I was being prepared to care for her, by loving and caring for our sweet Gavin.  Very cool for me to ponder.

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The favorite toy this year was a Fur Real pet that walks on the floor and then of course all the bracelets and other bling she picked out at the toy store.  Did you catch that?  Yes -- she totally picked out most of her birthday gifts this year.  We walked around the toy store and she used her talker to tell me yes or no.  The baby doll isle was the most challenging, but we finally found a baby that we both agreed on!  This communication thing is lots of fun -- hard work, but fun!

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This past weekend Chronically Cool Families took a trip to the Wilmington Blue Rocks.  Lots of fun, despite the down pour.  It's always a great time hanging out with other families who share a smiler story. It's always amazing to see how our group has grown.  What once was Adam and I's desire to see other families find community and support while dealing with chronic illness or disability is now the real deal -- our little once a month meetings as times are a packed house.
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One of the best parts of CCF is the diversity.  Of course it's great to have friends who's children have similar diagnosis but it's also really cool to be around other families who are dealing with a wide range of issues -- it's a great way to pull resources together that one disease specific group might not know about. Our group meets once a month at the A.I. duPont Hospital for Children and we either have open discussion, which is very laid back and includes lots of laughs or we have a guest speaker.  

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This months at CCF we are excited to have a panel of nurse managers from local home health care agencies.  Home nursing can be a huge source of stress for chronic families, so we are going to brain storm with the agencies and find out how the process of home nursing can be a success!  Feel free to contact me for more inforaton on our meeting dates and times!