Helping Jackson Fight CHD

My name is Margie and I'm writing in behalf of my 14 month old grandson, Jackson.  

Jackson is the second child of my daughter Chelsea and her husband Jordan.  They have a 2 year old little girl as well named Stella.

Jackson was born with a combination of Congenital Heart Defects.  His diagnosis is Tetralogy of Fallot, Pulmonary Atresia and Major Aortopulmonary Collateral Arteries.

Jackson had his first life saving Open Heart surgery at 11 days old.  He had another surgery in May of 2015 to place a stent and to coil off some of his MAPCAs.  Jackson had an NG (in the nose) feeding tube for the first 8 months of his life, and now has a G-tube feeding tube that was placed surgically in his stomach in August of 2015.  

Jackson has EKGs, Echocardiograms, and chest X-rays every 3 months with his pediatric Cardiologist.  Jackson meets monthly with a registered dietician as well as having routine follow ups with his Gastroenterologist.  Jackson also has Feeding Therapy and Physical Therapy twice a week with therapists who come to his home.

Jackson will need another Heart surgery to replace his main Pulmonary Valve. While we don't know when this will be exactly, we do know that it will be sooner rather than later.

Jackson is also battling severe oral aversion.  Jackson is 100% dependent on his feeding tube.  He vomits multiple times a day, which is heartbreaking and exhausting. Because of this he is not growing or developing like a child his age should be.  This is truly heart wrenching for his family members to watch.  

Jackson's parents have tried almost all of the tube feeding formulas out there.  They have yet to find one gentle enough that Jackson can actually tolerate.  They are eager to get Jackson onto a Formula called Nourish, but because of the price they haven't been able to.  Each pouch of Nourish is $12.50, with Jackson needing 3 pouches a day.  That equals out to be just over 1100.00 dollars a month!  Insurance won't pay for Nourish.

The medical debt from doctor visits, hospital stays, surgeries, and weekly therapy that this family has incurred is astronomical.  Jackson's parents would never ask for money from anyone, and that's where I come in with this GoFundMe page.  

Whether its $1.00 or $1000.00, this money is literally life changing.  Jacksons parents have exhausted their savings, as well as maxed out credit cards to try to provide the best quality of life that they can for their son.  This money will hopefully lift some of the heavy financial burden that this family is carrying on their shoulders.  I would love to see my daughter and her family receive the gift of not only being able provide their son with Nourish, but also be able to pay off some of their medical bills.  

Below I will post an excerpt from my daughters blog about Jacksons birth.  She also talks in more detail about his CHD and about his first Open Heart surgery.




"On January 10th, 2015, I gave birth  to a beautiful little boy.  He was the most perfect little toe head we had ever laid our eyes on, along with his big sister.  When Jackson was checked out, the Pediatrician on call heard a strong murmur and felt it was necessary to take him to the special care nursery for the night.  I was blissfully unaware of just how serious things really were.  It was a pretty uneventful night.  Jordan wheeled me up to the nursery every 2 hours to feed Jackson.  I couldnt wait to get him back into our room, and better yet I couldn't wait to take him home in a day or two.

The next morning was still pretty quiet.  At around 10am  the Pediatrician came into my room to let us know that they had called the LifeFlight team and in about 10 minutes our sweet not even day old newborn would be taken to Primary Childrens Hospital.  I was a mess.  I hobbled up to the nursery to see a team of nurses rushing around my sweet Jackson.  Inserting IVs, his tiny little face being smothered with an oxygen mask.  I uncontrollably sobbed while hugging a nurse.  She assured me that she'd be by his side the whole time, making sure he was getting the best care possible.

I stayed at the hospital.  Having just had a C-section not even 24 hours ago, there wasnt any way I could go with him.  I sent Jordan, not knowing he would be up there alone when we learned of his devestating diagnosis.

Jackson was immediately evaluated by a team of Doctors.  He had an EKG, numerous X-rays, and an Echocardiogram.  Thats when a team of Doctors approached my sweet husband to tell him what they found.  Our sweet baby was Diagnosed with a slew of Congential Heart Defects.  Tetralogy of Fallot, Pulmonary Atresia, and Major Aortopulmonary Collateral Arteries.

I was discharged the next morning, against my OBs recommendation.  We rushed up to PCMC.  Jackson was intubated with a breathing tube at this point.  He was transfered from the Neonatal Intesive Care Unit to the Cardiac Intensive Care Unit.  He needed to have Open Heart surgery immediately.  Because Jacksons heart anatomy was so unique, he needed multiple tests run to make sure the surgerons knew exactly how to perform and mend his broken heart.  This took 10 days.  10 days of waiting, praying, anticipating.  10 days of Jackson being on an IV Prostaglandin (PGE1) drip just to keep him alive.  PGE1 is a nasty drug, causing flu like symptoms.  My poor newborn whimpering from body aches constantly.  There wasnt anything I could do to make him feel better, and that truly is a helpless feeling.  

The night before Jacksons surgery,  I stayed up as late as I possibly could.  I sat in the reclining chair in my sons CICU room, draped with monitoring cords, oxygen and feeding tube tubing all while holding my sweet baby with tears constantly streaming down my face.  I sobbed while I sang "You are my Sunshine" over and over again, especially singing the line "Please dont take my Sunshine away".  That was easily one of the hardest days of my life,   not knowing if this would be the last time I would hold my son.  The nurse persuaded me to go up to my sleep room around 2am.  I promised I would be back around 4am.  Between 2am and 4am I slept like a rock.  My body was exhausted.  My mind even more so.  I returned to his room just when I said I would, just in time to watch the nurse bath him with a special solution to help prevent infection before surgery.  

The Cardiothoracic Surgeon came by around 6am.  I dont even remember much about this conversation.  Jordan did most of the talking.  He made sure he knew exactly what was going to be done.  I remember him going over mortality rates and things like that, it was all such a blur.  After he had come and gone, we were met with the Pediatric Cardiac Anesthesiologist who would be taking care of Jackson during surgery.  We walked with him down the stark white hall way,  which seems like an eternity.  I sobbed the whole way until we came to a set of double doors follwed by a yellow line on the floor.  This is where we had to say our goodbyes.  I remember saying to him "This is it?  This is where I have to say Goodbye?  I can't go any further?"  I kissed my sleeping Jackson on the head, telling him to promise me he'd make it through.  Telling him to be strong.  Telling him that his big sister was so eager to meet him.  Telling him how much his mommy loved him.  The anesthesiologist promised me he'd put him to sleep before he even did any poking.  We were given our pager and sent to the waiting room...

We reveived a page about every 2 hours as promised.  One right before they began, one when the first Incision was made.  Another update letting us know Jackson was successfully put on the Bypass machine.  Knowing that your child is in this hospital somewhere, with his heart stopped.  Its painful.  So, so painful.  I remember so vivdly sitting in the waiting room with Jordan, Jordan's dad, my Dad, Jordan's sister Meggan and his mom.  My mom was at home with Stella, how grateful I am for her.  I remember getting the pager update that said that Jackson was taken off Bypass and that his heart was beating again on its own.  I was crying so much I could barely choke out the update to everyone else.  It wasnt too much longer that we were greeted by the surgeon who took us into a private conference room to let us know how things went.  Things went as expected, but Jackson was still in a very cirtical state. Jacksons little body was so swollen from surgery that they werent able to close up his chest.  It would be left open for 3 days to help get some of the swelling off.

A few hours later we were able to see Jackson.  He was covered from head to toe in tubes and wires.  He was so swollen. He was so still.  You would think that I didnt have any tears left to cry at this point, but I did.  There were 2 nurses hovering over him, checking vitals, charting them.  I was so relieved, even though he looked worse than he ever had up to this point.  When I first walked into his room in the ICU the nurse excitedly said "He did it! He did great!"  I'll never forget that nurse, she made me feel hopeful for the first time in this whole process.  We sat by his bed for a few hours.  The only places I could touch him were the top of his head and his tiny little swollen toes.  I remember at one point kissing his head, whispering to him how much I loved him.  At that moment his heart rate increased ever so slighty.  The nurse assured me it was because he could hear me, he knew his mama was there.  I dont know how it was done, but I was talked into going home to my own bed that night.   That night at home I've never felt so at peace.  I knew he was going to be okay.  I knew he was being so well taken care of.  I knew he would sleep the whole night.  I slept like a ROCK that night i'll tell you what.  I woke up around 9am in a panick.  I was so mad at myself that I had let myself sleep for so long.  I dont even think I brushed my hair before I rushed out of the house that morning to head back up to the hospital.  

The next few days were a whirlwind.  Jackson had his chest cavity closed up on day 3 and did great.  He was having tubes and lines being pulling out left and right.  Before we knew it he was left with only 1 IV, his Oxgen, and his NG tube by day 5.  We were then transfered up to the step down unit to recover for a few more days before we were sent home.  

On January 30th, 2015 Jackson was finally able to come home.  He came home on Oxygen and his feeding tube.  We were set up with homecare and a Feeding Therapist who would come to our home.  We were finally feeling like we could look forward to the future.  What a great feeling!!

Thank you so much to everyone who has called or texted me and Jordan.  We feel all of your love for us, your concern for our little boy.  We are so grateful for every single one of you!"

Donations

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  • Aaron & Meggan Adams 
    • $2,000 
    • 61 mos
  • Anna Brimhall  
    • $50 
    • 61 mos
  • Suzanne Coleman 
    • $50 
    • 62 mos
  • Anonymous 
    • $100 
    • 62 mos
  • Anonymous 
    • $250 
    • 62 mos
See all

Organizer and beneficiary

Margie Gillman 
Organizer
Chelsea Knight 
Beneficiary
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