Jayden - Colorado

I went into preterm labor and was sent to a high risk OB who found on an ultrasound severe brain damage to our baby. Jayden was born almost 2 months early, January 17th in 2008, after over 36 hours of labor. He weighed 3 lb 11 oz and was 15 and 1/4in tall. He was immediately taken to the NICU and was put through multiple tests. My husband and I found out that night that our son had cCMV (congenital CytoMegaloVirus). Over the next couple of days Jayden had many more tests done. Jayden's brain is filled with fluid and he has calcifications all over and around. He has microcephaly, a small head (head circumference is not even on the charts and hasn't been since birth). Weight wise he is now, at 3 yrs old, 24 lbs and 35.5in tall (10-15% on growth chart) which is considered pretty small for his age but no matter what we try we can't get him to grow at a normal rate. It's assumed that his inability to grow weight wise even with the help of high calorie foods is because of all he goes through daily. He uses a lot of energy when he is awake doing simple things like kicking his legs and recovering from seizures so he burns a good amount of calories. At least he is growing at a steady rate for himself!

Seizure activity was picked up from day one on EEG but his seizures were not physically visible until he was 7 months old, although he was having them internally. He had to receive multiple blood transfusions and medications while in the NICU and this continued after he was allowed to come home. He had an enlarged liver and enlarged spleen. He had extreme bilirubin and required special light therapy for about 2 weeks. He required oxygen since day of birth and continued needing it until he was 9 months old. He failed both the hearing a vision screen initially and this was confirmed over the next two years of testing. He is deaf &blind, not fully Helen Keller but almost fully deaf and he is cortically blind meaning he only sees light. Initially, he was unable to eat orally and used a NG tube for the first couple of weeks but progressed to a bottle and then to food and a sippy cup by 9 months old, yes we got him off a bottle at 9 months old!

Jayden came home after almost a month in the NICU but was seen daily by one of his specialized doctors for his first year of life, we traveled/still travel all over Colorado to the best specialists for just about each body part and he has the most amazing pediatrician ever! He was hospitalized many times over the next few months and had many close calls. One in particular was because of a 2 hour seizure that 5 doctors and 6-7 other nurses/air life were unable to control. He ended up with a central line sewn into his groin and the seizure was later stopped. The paramedics and fire medics who rushed him to the hospital stayed with us the hour it took them to revive him. Since then, he experiences 50-100 seizures daily and is on 3 different medications plus a VNS pacemaker that sends continuous electric shock to his brain. Nothing has helped to control his seizures.

In November 2008, Jayden was placed into the Pediatric Hospice Waiver Program and that next year we had to pre-plan his funeral. This program allows him to stay at home with a private nurse on duty up to 14 hours daily/7 days a week, which we used three days a week for about nine months before I decided I wanted my time alone with him back! He has a DNR which says he will not have to suffer from broken ribs due to CPR or invasive measures like a Treach or life support. The new goal has become keeping him comfortable and as happy as possible. He is nonverbal, no words, but he yells and babbles constantly. He smiles all the time and laughs at funny noises! (The noises and talking has to be loud for him to hear so our house is a very loud place to be!) He has Spastic Cerebral Palsy and is unable to walk, hold his head up or control most of his body. He is wheelchair bound and requires help with everything similar to that of a baby only he is a fully grown 3 year old child.

In July 2009, Jayden had to have a Tonsillectomy and an Adenoidectomy because of breathing issues and recovery lasted about a month in-hospital stay and lead to 3 other surgeries. Jayden did not recover well and he stopped eating, swallowing and sucking, which he never regained the ability of. He had to have surgery on his tummy for gastric emptying issues (Pyloroplasty), a Nissen placed for severe reflux and a G-Tube placed so he can eat. He was fed by NG tube for the first 2 weeks in the hospital after recovery gone wrong and he did not look like he was coming out alive. Every day his doctors would come into his room with a terrified look on their faces but it wasn't until he was fully recovered from the G-tube, Nissen and Pyloroplasty that they told us if we had not done the last 3 surgeries he would not have lived. It has been a year and a half since the 5 surgeries of July 09 and Jayden still does not take anything by mouth. We can randomly give him a few licks of something but most of the time we regret it because he ends up choking. He has respiratory distress spells often. During these spells he stops breathing and gags as he tries to catch his breath. We are unsure why he does this but he does a few times a week. We have been lucky that he has brought himself through but we never know. We are helpless as we hold him trying to get him to breath. He turns red and blue and goes limp but by some luck he brings himself through. He always cries after these spells and it is heartbreaking. He did not cry as a baby, for almost a year we thought he was mute. He had blood drawn and shots given monthly and he wouldn't make a peep. He is very loud now! He does not talk but he sure can yell! He still doesn't react much to shots and blood draws but this is probably because the pain he deals with daily is far worse than a needle prick.

He is currently, Fall 09, on 13-15 doses of medication daily (two stomach meds, 3 seizure meds, 2 sleep meds) and each of these keep him alive. He also has inhalers for emergencies with respiratory issues. Doctor wise he has about 7 he sees regularly (monthly) and a handful he sees on yearly follow-ups.

Jayden was recently sent to Give Kids the World Village in Orlando, Florida on a Make a Wish trip to Disney World. The Village is a resort for terminally ill kids. It was an amazing place to be and Jayden enjoyed his trip to Disney World, Universal and Sea World! We are unsure of what each day will bring. Every morning we wake up unsure if Jayden will wake up. His happiness is our main priority! He smiles almost every day but his 50-100 seizures take a toll on him. His neurologists say "each seizure, whether a minute or hour, is time off his life".

January marks his 3rd birthday and a new adventure. He may start preschool at a special needs school! Cognitively he is stuck at a 3 months state which basically means he mentally is still a baby. He does not develop much and he has been unsuccessful with learning much. School for him will consist of physical and occupational therapy over 3 hours/4 days a week. His daily routine is: yells, smiles, seizes, receives physical and occupational therapy and loves being held! An interesting question was asked. Have I ever asked why me?? No, but I always ask, Why Jayden? Why does he suffer so much each day? Why is he so sick that he has to be placed onto the Pediatric Hospice? Why are these poor children born to die? We are all born to die, but I would much rather an adult who has lived their life go before these innocent children. Under the Hospice program my husband and I had to preplan our 2 year old son's funeral and were made to pick out a casket. No parent wants to do that or should have to go through this for their child!!
I have learned to cope with the reality of things but it kills me to see my baby boy in so much pain and unable to communicate what is wrong. It saddens me to think he will never experience many things as we do. He is deaf and blind and with severe CP he is unable to move much or even sit up and support his head and it's heartbreaking to think of how scary that must be for him. He is so fragile and dependent on us. He gets so scared at times and we cannot help much other than just holding him close. He seizes 50+ times a day even with 3 meds and a VNS pacemaker and the look he has on his face is heartbreaking. He wants help and we can't give it. He is in pain and we can't take it away. I feel for my child and all he goes through. I ask why him, but I believe we were given him for a reason. I keep him by my side as much as possible but even with every smile I get a little choked up knowing there is pain behind it that we can't take away. There is so much I have missed but this was kind of a short story!

New updates (2-15-11): Jayden had two dislocated hips, no surgery because of his health it would not be worth the pain of recovery, he has an injured arm and he is having blood sugar issues. His levels shoot from one extreme to the other in a matter of an hour or two which gives indication of a worse issue going on....He is sleeping much of the day away and is clearly in pain at times. We are keeping him close and cherishing any good days he has. School was denied by his doctor for health reasons, so he never got to begin preschool at the special needs school as planned.

New update: (8-15-11) Jayden began to get worse starting in December of 2010. This continued and worsened over each following month. June 2011 he had gotten so bad that he was switched from the Hospice Waiver to full Hospice in home. Feed issues worsened and got to a point where we could no longer force G-tube feeds. He went 24 days total without food. He dropped 7 pounds within weeks. Down from 27 pounds to 20 pounds (almost 30% body weight). During those 24 days he was put on an intense pain management regimen to ensure his comfort, all other medications were slowly discontinued over a period of 6weeks. His stomach and digestive system were the first to shut down which was the cause of his rejection of feeds. His lungs began to fill with fluid at about 10 days without food causing labored breathing and apnea, every few breaths lasting 45-60 seconds at a time. This worsened. His kidneys shut down around 16 days without food. His circulatory system began to fail around 20 days without food. The next day he could no longer take meds through stomach so we had to put pain meds through mouth, which he has not been able to take anything by mouth in years without gagging. He took the meds fine. His doctor and Hospice team could not believe that he was still holding on all odds against. He slept straight through to the 24th day.

On the 24th day, August 13, 2011, he refused to take pain meds at all. The day seemed long. His breathing was labored and fluid was bubbling through mouth all day long. Still sleeping and seeming peaceful. At 7:55pm he woke up gagging on his saliva. My husband picked him up and tried to help him clear airway. By this time we could tell it was fluid filling his lungs that we would not be able to clear. I took him and held him. He was drowning in the fluid from his body. We could hear the bubbling noise as he tried to breathe in and out. The fluid seemed to fill more and more. He looked so terrified. His eyes wide open for the first time in weeks. He was reaching as he tried to pull in air. His lungs would not allow any oxygen in. We held him close and told him that it was ok to go. We told him how much we love him and how much he deserves to be in peace. He has worked for so many years to stay strong for us and now it is time for us to be strong for him. We look down at one point and see his 3 month old baby brother holding his arm and rubbing it.

Five minutes pass and he is still fighting for his life. He deserved so much more. He deserved a peaceful death. He deserved a peaceful life but he was not given that either. We were so helpless as we tried to help him but could not do anything to help. No amount of suctioning could stop fluid filling his lungs. Kidney failure caused this to happen and there was no way to help. At 8:05pm he relaxed and stopped fighting. At 8:06pm his heart stopped. I closed his eyes and just held him. While waiting for the Hospice nurses to come we cleaned him all up and dressed him in his favorite PJ's and blanket. Called and spoke with his doctor for a few minutes and then the process began; people coming and being called. The mortuary sent two of their best people to pick him up. They had the sweetest bed with blankets and bears in the back of their van, which looked just like our van so it was a definite comfort. My husband carried him out and we said goodbye.

We have not seen him since Saturday. Very anxious to see him Wednesday to dress him! We will be able to see him as much as we want up until the end of the funeral of course. Still in shock and not sure how I feel about everything but we are taking it one day at a time. We have so much to do this week and are getting things together to honor him as best we can! He deserved so much more during his life in terms of all the suffering he went through but he especially deserved more in the end. He was such a fighter! So strong and brave! So full of love and smiles! He will be forever missed. There is a huge hole in the lives of many, especially ours which was focused fully on him. Without the consistent love and positive support from Jayden's Nana, Uncle Jovan and Auntie Trinity we would not have been able to get through the past 3.5 years so strongly. They were a part of every milestone, hospitalization, surgery, new outing or adventure and most of all just to hang out and experience something new with him! There were many supportive people in our lives but those three went beyond what we ever asked! We were blessed and lucky to have so many people in our and Jayden's life. Those around him could tell you that he had a lot of struggles but his happiness and smiles throughout it all was an inspiration! He was such a happy child! We took him everywhere and did everything with him whether or not he could fully participate; the point was to build an experience and memory and give him all life had to offer! He would never sulk or fuss. He would just try harder to smile! The strength he has is just beyond what words can describe. Not many adults could have dealt with the things our 3 year old could and did. He is at peace now. He is whole and healthy! He is our Angel! We miss him dearly.

Rest in Peace son! 1-17-08 * 8-13-11

- Shared by his mother, Karina