Meeting with Jackson's Doctors

People ask us all the time how we are doing.  We really don’t know how to answer that question.  Some days we are doing well.  Other days, we are not. We still have not taken down Jackson’s crib.  I think we are getting closer to being able to take it down-I am trying to think of ways to rearrange the room to make it Austin’s room and not have such a gaping hole where Jackson’s crib is.  People have told me not to get rid of anything that was Jackson’s-that I will regret it. 

I was finally ready last weekend to start packing up some of his things.  My family was sweet enough to pack up everything in his room in the PICU the night he died.  Last weekend, I sat down by myself and went through everything in that box and packed it up.  The blanket that was wrapped around him when he died was in the top of the box.  There were half full shampoo and lotion bottles, blankets, washcloths he had used, socks he had worn, and a little arm brace they had used to hold his arm straight for his IV.  All little pieces of him.  It made me sad to pack it all up into 2 boxes to go under a bed.  We miss him every day.  The nurses made us a memory book of Jackson-complete with a lock of his hair and hand and feet prints. 

We met with some of the doctors this week to go over the results of Jackson’s autopsy.  We decided to do a limited autopsy of his lungs, liver, and heart.  The pathologist found everything with the heart to be intact and working well.  At some point, they thought the shunt the surgeon has put in was kinked.  The pathologist surprised us with her findings.  It seems our sweet little angel who looked perfect on the outside was more imperfect on the inside then we first knew.  His liver was green when they did the autopsy.  He had biliary atresia- a blockage in the tubes (ducts) that carry a liquid called bile from the liver to the gallbladder.  This was present at birth, just undiagnosed.  Through ultrasound, the liver appeared normal.  Jackson appeared very jaundiced days after surgery.  The doctors never knew exactly why.  At the end of his life, the doctors were considering doing some tests on his liver, but since his kidneys were shutting down, they refrained.  The pathologist said there were procedures that could have been done to “band aid” the problems with the liver, but ultimately, Jackson would have required a liver transplant.  More than likely, with all of his other health issues, he would not have been considered a candidate for a liver transplant.  Jackson’s lungs were also not fully matured.  The boys were full term for twins-37 weeks, and throughout everything, it appeared that his lungs were in great shape.  They were even talking about weaning him off the ventilator right before he started going down hill.  I am no medical expert-but the pathologist showed us a picture of Jackson’s lungs, and she explained that the parts of the lung that should be big and narrow were small and thick-not allowing good flow of air.  There was also some blood in the lungs.  She even mentioned that he might have needed a lung transplant had this problem not corrected itself over time.  All this being said, Jackson would have had a very rough road ahead of him.  He would have been in and out of the hospital, constantly seeing doctors and taking medication, and his quality of life would have been poor. Who knows how long he would have lasted.  This news all made me very sad-sad to think that he was as sick as he was.  Sad to think of everything he went through for his 39 days of life.  Sad to think of how safe and secure he was in the womb only to come out and struggle the minute he came into this world.  I know he is in a better place now-with a perfect heart, perfect lungs, and a perfect liver.  I know God is taking good care of our little angel. 

On another note, the producers from TLC sent us a DVD of the footage they shot of Jackson.  It is amazing to have the memories they captured-lots of them I had forgotten from either still be drugged from the C Section or just sleep deprived.  They caught moments of time of him that are amazing.  He was such a beautiful baby.  He had lots of blond hair and sweet skin.  They even filmed him when he opened his eyes and looked at me-I didn’t remember that at all.  They have footage of the ONLY time we ever heard Jackson crying-right when he was born.  He was immediately intubated and never cried aloud after that moment.  They captured the first time I saw him after birth-the boys were born at 2:21 pm and 2:22 pm, and I didn’t get to go see Jackson until about 11 pm that night.  They have footage of Austin in the NICU that I never got to see, as well.  It was so awesome to see our parents’ reaction of the boys’ birth, too.  They were all so excited.  Most of the footage is birth or Jackson in the NICU.  There is limited footage of Jackson in the PICU, but we are ok with that.  Our Jackson is the baby that was in the NICU.  After his surgery, he was so swollen and unresponsive that we like to remember him the way he was in the NICU.  We are forever grateful for the kind, thoughtful people at TLC. All the camera crew, producers, and even the people in New York were so respectful.  Since Jackson went to Heaven, the show will not air, as they told us, America only wants to see happy endings.  We are thankful for the time they got to spend with our little angel and the memories they captured for our family.