Monday, November 30, 2009

Art Therapy...

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Last week Madison had her first art therapy session -- actually it was just Adam and I this session, giving our families story and talking about our crazy cool little girl. I really enjoyed telling our story to an "outsider," after all it doesn't happen that often that someone doesn't actually know our story.

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I loved going back over that past four years. Even though they were filled with an awful lot of heartache there were also so many memories made both inside and outside the hospital walls. I can totally see how some people really dig therapy -- how often does one get to just keep talking and the other person actually has to listen to you.

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This coming week we will do a family session. We will have a short talk time and then we will do a family art project -- sounds like fun to me. Madison seems very excited but keeps asking when it will be "her" appointment, meaning without her parents tagging along. That comes next week -- from then on it will be "her" appointment where she can run the show.

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I think she is going to be just fine.

Friday, November 27, 2009

Shipping Address For BabyLegs...UPDATED

We now have a PO Box that you can have the Baby Legs shipped to!!  You can send them to:


Karen Owens
PO Box 985
Boyertown PA 19512


In The News...




Click to read the full article.

Thursday, November 26, 2009

Shipping Address For BabyLegs...

Your guys are just so amazing!  The response to the BabyLegs for Kids Campaign is out of this world -- so much that tomorrow I will be going to purchase a PO Box, so that I can just post the shipping info right here for all the world to see!


Check back tomorrow late morning and I will add the PO Box address.  If you have already shipped to our home address that's perfectly fine -- it will be exciting to see all the little packages arrive!  


We are still so excited to do this!  This is so much fun!

BabyLegs News Flash..






The following is an email I received from Samantha Wattson, Marketing Director for BabyLegs:


"In the last few days we have received numerous emails about your BabyLegs for Kids campaign. It is obvious that you have touched the lives of many people by sharing your families’ story.  I spent some time on your blog today, looking through your posts, and reading about the daily victories and perils you have faced in the past few years with Gavin. I am sorry to hear about your loss, but hope peace and love are surrounding your family. Our thoughts and prayers are with your family.  
 We would like to help you in your efforts to bring BabyLegs to the AI DuPont Hospital. I have a few ideas that I would love to share with you to help increase your efforts. We would also like to match the donations that you receive from people. We would like to match up to 5,000 pairs of BabyLegs, with a minimum donation of 1000 pairs."

How freakin' cool is that?   I've feel the challenge coming on and I'm ready!  There is no reason that every child at duPont Children's Hospital, within the age to actually wear the BabyLegs, cannot be touched by Gavin's life.  We know that the BabyLegs will not make these kids better, but it will let their families know that they are not alone.  We plan on attaching a Never Lose Hope sticker to each pair of BabyLegs -- passing on the message that Gavin and our family stands for -- Never Losing Hope in a loving and gracious God, despite the challenges placed in our path.


So here is the challenge:  We have on average two thousand readers who look at this very website.  If each one you buys just one pair of BabyLegs and tells two of your friends to do the same -- will meet the matching challenge given by the BabyLegs Staff -- plus more!


We can do it!  


Go to BabyLegs.com right now and take advantage of the great offers like Buy One Get One Free and Free Shipping.





**deep breath**


Can you feel my excitement?

Wednesday, November 25, 2009

Thanksgiving -- On A Whole New Level...

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Growing up I was always taught that Thanksgiving is a time to think about what we are grateful for -- the blessing we have in our lives.  I remember in Sunday School making little crafts often times listing the top ten things we are grateful for this past year.  In all honesty,  do we really actually take the time to think about just how grateful we are.  It's weird how our human minds work -- it's hard to recognize the good things in our life until they are gone.

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This year my heart is overwhelmed and my mind is just about shot from the countless hours going back and thinking about the past four years.  Did I ever really thank God for life?  Not only my life but the life of my husband and the life of my children.  Life is such a funny thing.  We tend to think it's guaranteed -- and then *poof* one day it is gone.

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I really feel in my heart that Adam and I tried to make the best out what we were handed over these past several years.  But I just have to think back at all the times I should have been thanking God and instead I was looking for a new day, a way out of our situation.  

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Even when life seems unfair, when jobs stink and children are getting on our last nerves -- there is so much to be thankful for.  I remember the day before we took Gavin off the bipap -- I looked at the monitor and just prayed that one of those breaths would be triggered by his own little body.  Each time a breath was taken without the ventilator forcing the air in -- my heart jumped with such excitement. My entire being was so focused on each and every rise of my little boy's chest.  

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 If only we lived each day as it was not only our last day of life -- but our last breath.  


God -- thank you for life. 

Monday, November 23, 2009

Going Back...

Photo Credit: Ryan EstesPhoto Credit: Ryan Estes

Today was the first day I walked through the doors of DuPont Children's Hospital -- without my little boy. There are so many different feelings going through my tired emotionally overloaded mind. It feels weird to enter that building as Karen Owens, not Gavin's mom. Even though I believe I will always be known as Gavin's mom or the Mom who never sleeps, as I found out I was known as for Gavin's first year of life by the nursing staff, there is part of my title that has forever changed.


I am now a mother who has lost her child -- I have joined the unwanted club of grieving mothers.


In an odd sort of way there is so much peace in walking through those doors-- after all this was a place of healing. We would bring Gavin through these doors not knowing if these were his last moments only to walk back out a week or so later with our little Boy still hanging on to life. I walk through these doors today as a broken women finding healing by giving back to the place who has given me so much. This place gave us safety and most of all it gave us more time with Gavin and more time as a family.

Photo Credit: Ryan EstesPhoto Credit: Ryan Estes

Today we were able to donate Gavin's infant warmer to the unit we lived on for the past three years it was a much needed piece of equipment as the current warmers on the unit as so old and annoying.  I was also able to  drop off a proposal for a support group we are going to be starting at duPont.  We re very excited to launch this new support group early next year!


You all are rockin' the Babylegs Campaign -- keep up the great work and spread the news! We can keep those chubby legs warm this winter!


Photo Credit: Ryan Estes, NILMDTS

Saturday, November 21, 2009

Babylegs Campaign...




We are so stinkin' excited to announce our Babylegs for Kids campaign!  What are Babylegs you ask?  They are the amazing leg warmers that our little fighter wore his entire life and what many parents of medically fragile children have come to know as a necessity.  Having a child with tubes is difficult but trying to find clothes for a child with tubes can be even more challenging.  Babylegs provide a great way of keeping their little legs warm without having to have them in pants.


During hospital stays many parents find it difficult to keep their little ones warm while dressed in the yucky hospital gowns.  Bundling them up in nice warm pj's is often impractical and unsafe particularly for children who need to be frequently examined by the hospital staff or children with lots of tubes and wires.


Lets help keep those chubby little legs warm this holiday season!  We will be accepting donations of new Babylegs up until December 21st.  You can use the contact our family button on the sidebar of this page to email out family to find out the mailing address.  You can purchase Babylegs at places like Target and also at babylegs.com.


What a great way to honor our little fighter!  Gavin loved his Babylegs and we did too!

Friday, November 20, 2009

Remembering...







When Gavin was admitted to A.I. duPont Children’s Hospital for the last time about one month ago the memories from that day sit like a cold rock in the bottom of my stomach.  He had a high fever with spells of low O2 saturations and Adam and I felt he needed to come in to be admitted.  As always Gavin’s attending Doctor was right there to support us in our decision and had us come right in.


Dr. R met me down in the ER and the words he spoke will forever stay in my memory.  He walked in the room like a man with a purpose.  He’s not very good at hiding when there is something on his mind -- in fact his very presentation was something I had always dreaded over the past three years as it was usually followed by some kind of bad news of difficult decision needing to be made.  He sat on the bed next to Gavin sleeping in his wheelchair and looked me in the eye.


Does he have anymore good days?  







It was that simple.  In that very moment I came to the painful realization that I have not really seem my little Gavin in many months.  The Mito had begun to take his mind.  He would scream for hours on end, not wanting anything in particular.  He would either sleep for days or be unable to sleep for days leading to delirium.  We needed to inject intense psychiatric meds into his little 3 year old failing body just to keep him safe from himself -- the pulling of his lines, the thrashing of his body.


These are the things I remember -- these are the reasons I will forever be grateful to Gavin’s doctor, our friend,  who reminded us that our little boy was gone -- it was time to let him go.







These are the reasons I will forever worship a holy and sovereign God who wouldn’t dare let my little Gavin suffer another day more than he had.  


These are the reasons Adam and I find perfect peace in knowing that our little boy is no longer suffering.




Photo Credit: Ryan Estes Photography, NILMDTS



Wednesday, November 18, 2009

Finding Our New Normal...

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I kinda feel like I am having a flashback in time, when Adam and I first came to the realization that our life was not normal -- when we found our new normal. Our new normal included a life of chaos, uncertianty but was also filled with lots of life and love. It was defined by hospital walls, yet held the anticipation of all life had to offer once we found freedom for a few weeks or days at a time.


Gavin is gone. Although I would do anything to have my little boy back, truth is he is not truely gone, as his very essence pours from our little family. Our very souls hold fast to the spirit of hope, love and joy God chose to teach through Gavin's life.

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This begins our new normal.


Many are wondeing just how Adam and I are doing. The truth is we are doing pretty good. I can't begin to explain te heartache Adam and I experienced while watching our baby boy suffer for three and a half long years. When I say suffer mean true suffering that no human being, yet alone a child, should have to endure. The last 52 hours of Gavi's life made Adam and I fully understand that Gavin's work here on Earth was finished. Gavin's little body was done -- his spirit was ready to experience God's total and perfect healing -- our family was ready to receive God's total and perfect healing.


We will never forget.


Please never forget our little fighter. Remember the impact he had on your life. Welcome us back into your lives -- we ate ready to redefine life as we know it. Feel free to ask questions about his last days. We want and long to talk about our little boy. His death, although so painful, was a beautiful experience we will never forget -- laying cuddeled up with our baby boy and watching God's total healing power flow through Gavin's broken tired body.

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If you are wondering how Madison is doing -- just look at these photos. Although she misses her little brother I think she too is finding healing -- freedom. She is finding peace and is more than ready to have her mommie and daddy back!

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Wednesday, November 11, 2009

A Celebration...

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We are so excited to celebrate Gavin's life and the impact our little boy had on this world.  We want you to join us!  We don't care if you have never met Gavin in person -- if he has made an impact on your life then we want you to join us in remembering the spirit of hope, joy and love he spread to this world.

In the midst of our sadness we find hope and joy knowing how many people's lives have been forever changed by Gavin's three short years of life here on earth. 

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Join us on Sunday, November 15 at 3 pm for a Celebration of Life to honor Gavin Owens. From 3 - 4 pm there will be time to express your thoughts and condolences to Adam and Karen Owens. At 4 pm, a special service will be held to celebrate Gavin's time with us and rejoice that he is now very much alive in Heaven. (Childcare will be provided for children ages 5& under in the Church Nursery from 3-5pm.)

Services wil be held at Morning Star Fellowship : 100 Limkiln Rd, Bechtelsville, Pa 19505

In lieu of flowers, contributions may be made to 3E Patient Care Unit at the Alfred I Dupont Hospital for Children. Your contribution may be mailed to Nemours Partnership for Children's Health 1600 Rockland R. Wilmington DE. 19803

Monday, November 9, 2009

Healing...

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Is it really possible to be healed without actually receiving what most would consider a physical healing?  I think so.  Yesterday at 10:42pm Adam and I witnessed first hand the total healing of our little boy.  While snuggled up with Mommie and Daddy Gavin slowed his breathing and his little heart stopped beating -- his body found complete and total healing.

Gavin's death was one filled with so much sorrow and hurt yet so much peace and joy flowed freely in that room.  Our little boy is healed.  Our hearts are hurting so bad and will forever miss our little fighter yet the sense of peace that flows is so beautiful and indescribable.


You have no need to fight anymore my sweet little boy. 

Sunday, November 8, 2009

Another Long Night...

We are so tired.  Tired is probably not even a good enough word for the state we are in.  Watching our child suffering is unbearable.  Gavin spent most of the night with O2 levels in the low 60's to low 50's -- yet he is still trying to keep going.  His lungs are almost completely filed with fluid and his is swollen and grey.  We are having so much difficulty keeping him comfortable.  He is on lethal doses of narcotics and we also started with sedation medications -- but he is still building tolerance as the hours go by.  His CO2 levels are probably so high at this point that he really isn't cognitively intact anymore but it is very difficult to hear him cry out.

I sat with him for a few hours last night and rested by hand of his chest just praying that each breath would be his last -- that he would realize that he didn't need to fight anymore.  He could stop suffering. 

Today we are stopping all fluids is hopes it will help this process.  We are also seeing if we can begin Propofol to help him stay sedated and peaceful.

We can feel your prayers.  Through all of this Adam and I have a sense of peace -- knowing that the end will be a moment of joy and freedom for his tired body. 

Saturday, November 7, 2009

Looking Back...

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Our Fighter...

Wow-- what a past 48 hours it has been.  Gavin is still fighting and we are just waiting for him to find peace.  Yesterday around 3pm we made the decision to remove Gavin from the biPap as it was just acting like a ventilator and he was not triggering his own breaths.

We all mourned and cried as we said our final goodbye.  The doctors waited in anticipation of the inevitable but that still, 8 hours later has not happened.  Gavin decided to breath on his own.  He is not breathing well and is only sating in the upper 70's right now and his lungs are filling with secretions.

This is not what we expected -- this is not what anyone expected.  His CO2 levels are rising which may give him a peacful death but also triggers his body to breath.  The doc said that when an individuals O2 is in the upper 70's they will see a cycle begin to occur.  The body is triggered to breath and the O2 goes up a bit and then falls back down -- that's where we are at.  It will not be until be is in the low 70's that his body will probably not be able to recover and then he will finally be at peace.

Adam and i are a mess.  Yesterday when we took him off the biPap we mourned the loss of our baby boy.  To have to watch him go through a slow death is almost unbearable.  It will happen and we know that but it is difficult for us to see him as we already kinda let him go.

Madison is having a very difficult time as well and is very confused.  My family came back to the hospital today and Madison did not want to come.  She didn't understand why she had to come back -- why we were still here, if Gavin was already in Heaven.  It's so hard. 

Please pray so hard Gavin can stop fighting and just finally find some peace.  He has fought so hard his entire life this is the only thing he knows how to do.  It is horrible watching him go through this.  We feel like we are having to watch him die twice.


Friday, November 6, 2009

Time to Go...

I find it hard to believe it's even time to write this post.  Gavin is in his last moments.  His breathing is now totally dependent on the biPap, which is acting like a ventilator.  He is well sedated and we will keep him comfortable and on the biPap until the rest of our family arrives from out of state tonight.  We are praying he will stay with us until then as there is a chance the morphine will stop his heart.

I've gone from totally a mess to having a nice sense of peace.  Gavin needs to go.  He is suffering, and in fact we have not seen our little Gavi in a long time.  The mito has destroyed his body beyond repair and he is ready to find his total healing in the arms of his Jesus who I know is waiting for him.

We were able to talk with Gavin's doctor who is in Guatemala, and he was able to walk us through some of these last moments.  It was nice to hear his voice and he has become such a comfort to our family.  We also were able to have a photographer from Now I Lay Me Down To Sleep come in and take many photos of our family spending time with Gavin.

We are tired and hurting and wondering how we will ever possibly live without our little boy.  Please pray that his passing will be beautiful and full of peace.  He has done an amazing work here on Earth, touching the lives of countless people across the world. 

It's now his turn to receive his reward -- peace.

Total peace.

Thursday, November 5, 2009

A Little More Time...

More time -- that's all I really want right now.  We have been talking about Gavin's death before he was even born, yet nothing could have prepared me what these next few days or weeks will hold.  I find myself in disbelief as I hear the words come out of the doctor's mouth.  I just want more time.


I want so badly to bring him home into the house that so many people have worked so hard to make happen -- but I just don't know if it will happen.  The doctors believe he does not have much longer.  I believe he is going to come home, but as I sit hear and listen to the alarms going off telling me that the bipap is breathing for him I start to question.  My heart feels that if we can just get him home -- give him something to fight for, he will turn around.  I would be happy with just another week.  I want his Doctor there.  I want to make sure the photographer is there.  I want my family there.  I want it all to be prefect and planned.


Death is anything but planned.


It sucks.


The difficult part of this process is that Adam and I's decisions determine how long we have.  He is suffering. In order to relieve that suffering we want to give him the medication he needs to find peace and relief.  More more meds we push, the more difficult it is for him to breath. Although lots of fluid was pulled off him over the past two days his lungs have not improved, but rather have gotten worse.


I just want more time.

Wednesday, November 4, 2009

Home and Back Again...

Yesterday everything was set for discharge.  We transitioned Gavin from the hospital's bi-Pap machine over to out ventilator we will be using at home.  He did have some difficult going onto the home vent because we are not able to give him as much O2 as what the hospital can give.  On 4 liters he was struggling to stay above 90% O2 saturation in his blood. 


After a few hours he seemed to settle into his new machine so we signed our papers and headed home.  It was a long ride.  Gavin was very uncomfortable and he desated most of the way home.  Once we were home his O2 was up be he was just very agitated and uncomfortable.  Our nurse arrived and it just kinda went down hill from there.


We were totally overwhelmed once we got home.  Gavin is on so many IV medications and infusions that it can drive even the most skilled doc or nurse insane.  Our nurse was helpful but I was still feeling a little uneasy about everything, plus have a ventilator now that he is completely dependent on is very scary.


I finally went up to bed and a few hours later Gavin's nurse woke me up to say he was shaking and was breathing very fast. I came down to find the all to familiar presentation of "sick Gavin."  At first his temp as still very low so I wasn't too concerned and just called the doc to see if we could give additional meds to make him comfortable.  A few moments later he was getting worse and his temp was way up.


So we all packed Gavin and I up and headed out the door and back here to duPont.  Gavin is doing better, temp is down to a low grade fever and his breathing is much better as we are giving him more O2.  I'm not sure hoe I'm feeling about all this.  I felt very panicky at home wondering what they heck was going on in his little body and wondering if this could possibly "it."  Now I'm feeling a sense of relief as he is now looking the same as prior to leaving the hospital.  I feel an odd sense of comfort being back in these walls.  It's so safe here right now.  Anything out of the ordinary and the docs come running.  I really want to get home, but I want Gavin to be ok at home.


It's all just a mess.  Nothing is working out as planned.  I just want to be together as a family in the new house.


Please pray.

Monday, November 2, 2009

Monday Update...

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This morning Gavin was showing some signs of improvement.  After addition Albumin and lasix last night his swelling seemed to go down a little bit.  He was a little more alert and even watched tv for a short amount of time before falling back asleep.  This afternoon however he wasn't looking so great.  Throughout the day his third spacing or swelling came back with a vengeance.  I hardly recognize my little boy.  His skin is so stretched it looks painful.


Early this evening they rewired a new line into Gavin's groin as they didn't think he has stable enough to endure a new broviac placement.  He did well in the OR and they managed to use the least amount of sedation in order to prevent intubation with the fear that they would not be able to extubate him.  Tonight he will be receiving blood and more lasix, again to try to pull the massive amounts of fluid out of his skin.

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We are going home tomorrow.  I guess I'm happy but it's a bitter sweet time.  I still have hope but it's so hard to hang on to that hope when our doctors are preparing us for the worst, which seems like it is becoming more and more reality.  Today was a difficult day emotionally.  One hour I was a crying fool and the next I felt so detached from the situation.  I guess that's all normal.


It was so amazing to watch Madison and Gavin have some time together.  If I could go back and change one thing it would be to have allowed Madi to have more interaction with Gavin.  I plan on making up for some lost time and giving her some really special time with him.  There is still hope.  If he can get over this respiratory hump then we will be back to our original plan and taking him home with his last line and just waiting until be got an infection we could not treat and then peacefully letting him go.  Our plan is now all messed up and Im just praying things will quiet down once we get him home.


After all home is the best place to heal.

Sunday, November 1, 2009

For The Record...

I can't believe I even have to say this, but I do not post of any websites but my personal webpages and twitter.  I do not post on any Parent-To-Parent site.  


Apparently someone actually wants to be in my shoes.


What the heck?




*** Problem resolved.  Thanks to the people at Parent-to-Parent for making that a quick resolution.

Sunday...

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Last night was horrible.  For anyone following  us on twitter you would know that I was up most of the night watching Gavin's struggle to breath.  It started with an increased need for O2 and the morphed into a temp of over 106.  By that time we had to bring in the high flow nasal cannula and he was on 9 liters at 100% O2.  HIs sats still were not great.

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This morning he continued to worsen and it was later found by xray that both of his lungs are 50% collapsed, explaining the need to so much oxygen.  From eh xray it doesn't look like any type of pneumonia but rather sludge that builds due to Gavin being so weak he cannot take deep breaths and therefore the tiny vessels begin to collapse.

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Our doctor this morning had a talk with us and discussed all the options -- some of the talk was grim but we are still hanging on to hope.  We made the decision to move him to bipap and put some pressure back into his lungs.  So far he is doing great on the bipap.  He is sating 100 and his heart rate is down and he just looks a lot more comfortable.


We took him off his TPN and put him on normal fluids at a low rate, thinking that if there is an infection in the line we will stop putting pushing so much fluid through the infected line.  We also are running both Albumin and lasix to try to push some of the enormous amount of fluid off his body and out of his lungs.  We added an additional antibiotics just in case we are missing something.

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This afternoon I'm feeling a little better.  His temp has come down, his heart rate is down and he is resting comfortably and not struggling to breath.  We will be taking him home.  Gavin wants to go home.  In fact the only thing that calmed him down after putting the bipap on his face was me softly telling him that we could go home and play with Madi and play with his choo choos.


He softly whispered "ok."

In The News...

Reading Eagle

Click on the photo to read the full article.