Make your own free website on Tripod.com

The Gregory-Arritola Family

Home | Our Family | Highlights | Chronological Overview | Prenatal Diagnosis | Birth Plan | Birth Day | Daily Life with Trisomy 13 | T13 Medical History | Resourceful Links | Physicians Letter | Contact Us | Emmanuel's Foundation | Quotes | Photos & Guest Book

Living / Loving / Coping / Surviving Stongly

PHASE 7 - Daily Life

(Chronological since birth) 

 

First Month

Anthony spent the first two weeks of his life in the NICU at Scottish Rite Children's Hospital.  He was born with an oemphalocele for which we were denied surgery by the hospital bio-ethic committee on day 2 of his life.  Heart surgery at this hospital would be out of the question too.  Despite the probability that he would not come home, he did because the hospital really wasn't doing anything to help him survive.  He was holding his own - breathing on his own, eating and gaining weight so they were able to discharge us with a mandatory class in infant CPR.  We requested he come home with an apnea monitor and at 30 days old, Anthony went into Cardiac Arrest.  Mom and dad whipped into CPR without hesitation and within less than 3 minutes (which seemed like an eternity), his limp body was breathing again.  He was taken to the hospital by paramedics and we were notified of the heavy decisions we needed to make about his plan of care.  We were told this would happen again and again  (It never did!) and we were consulted on the meaning of a DNR versus Code Blue.  

 

Second Month

Coming out of the Cardiac Arrest incident, we were prepped that Anthony would not live much longer and that these episodes could happen again and again and we needed to choose how we would handle it the next time and the next.  After heavy thought for many days, we chose Pediatric Hospice which allowed us to go home and receive in home nursing visits up to two times a week (for about 1-2 hours).  Anthony continued to grow, gain weight and begin eating from a bottle at two months.  He did not come close to anything that was described about how he would be.  At seven months he was discharged from the Pediatric Hospice Program and put into a Palliatative Care but later released as he was doing well. (We outlived our Insurance Benefit for Hospice but were never kicked out of the program due to lack of medical funding - Atlanta Hospice carried the bill until we decided Hospice was not for us - and they would have for as long as he lived even if it were 20+ years!)

 

5-9 Months

Anthony began a catch up growth spurt from January through March and was wearing preemie clothes in December when he was 5 months old, to wearing 3-6 month sizes in April (when he was 9 months old) and wearing 9-12 month sizes in May (when he was 10 months old).  He has grown about one half inch in length each week since the middle of January.  We suspected his next growth spurt will be more of a plumping up :)  although it looks like his head is actually growing the most :) 

 

Our daily life is filled with particular play to help him stretch and develop his muscle tone.  We call this Physical and Occupational Therapy but actually it’s just focused play that doesn't allow me to take sitting him in a swing for granted.  He continues to reach typical baby milestones despite his blindness and other obstacles of the past.  Mom and dads greatest challenge of learning how to help a blind baby reach and grab something unseen is somewhat alleviated with this last eye surgery and we are anxious to begin reaching milestones quicker. 

 

We continue to use vocabulary and sounds.  This is new for us as raising our three other children had trained us differently.  Mostly, I've had to educate myself on specific developmental matters and thankfully we have a city full of resources to help keep us updated and informed.    

 

At almost 10 months old, Anthony's growth spurt began to take a toll as he was growing faster than his eating volume was increasing.  We began having feeding difficulties with this and elected (after serious consideration) to have a G-tube inserted making his daily feeding care more efficient from the NG tube.  He was scheduled for this proceedure as well as a Fundoplication, to alleviate his hiatal herniaWhile in the Operating Room for the above (elected) procedure, Anthony's left eye had a congenital retinal stalk removed which also relieve the intraocular pressure (Glaucoma).   Also an elected surgery.  Within 24 hours of this elected surgery date, Anthony was doing great, healing fine and saw his mom and dad for the first time through his own eyes! 

 

Although this first scheduled surgery went well, Anthony had a major setback with a complication of an obstructed and incarcerated bowel on day 3 of recovery.  During our hospital recovery from the above (elected) surgery, the surgeons happened upon an EMERGENT life -threatening congenital anomaly called Meckel's Diverticulum.  As recovery continued from the above mentioned (elected and emergent) surgeries, Anthony's once dormant inguinal hernias resurfaced, causing problematic issues with his already stressed out digestive tract.  We were given a tough choice to send him back to the Operating Room versus living with a life threatening risk of another incarceration.  IF we choose the latter, we would only be back in the Operating Room should it become emergent (and incarcerated).  Because during his recovery, he had incarcerated several times,  we felt we had no other choice than to elect to do surgery while he was well (all things considered) versus him getting sicker.  Anthony came through surgery well and looks great but these complications will lead us through an elongated healing process.

 

Anthony did well in each surgery with no problems from anesthesia, his heart or his breathing.  His digestive tract itself was what causes/caused his recovery to linger and gave him the most difficult time during this hospitalization.  The stress of this recovery presented more frequent neurological symptoms after the first three to four weeks of this hospitilization. 

 

Anthony is 11 months old and still hospitalized from the above proceedures.  The largest complications in healing are with the area in his abdomen that was removed due to emergent life and death situation (the Meckel's Diverticulum) which was a very severe and serious major surgery that his little body is having a hard time recovering from. 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Journal Update as of JUNE 28, 2006

Day 55 of our hospitilization

Anthony's last week with us on Earth

 

There has been a storming in heaven and I am thankful for your faith filled prayers.  For those of you following our journey via e-mail or telephone, you know we have faced death several times and yet littlest Anthony continues to breathe again all on his own and fight like the strong little man he is.  Yes - it is heart wrenching to watch and heart wrenching to even explain, and I’m sure heart wrenching to even read – but the truth is … it is a testimony to how strong the will of the human spirit is and a testimony that our life is from God and not dependent on anything we do to intervene or not to intervene.  Life is simply sacred.  We are made in the image of our creator and we are not weak. 

 

As my husband and family sit with littlest Anthony, we are faced with the weakest portions of our being yet are surprisingly experiencing the strongest of Gods graces.  What an incredible and beautiful blessing to be experiencing this with God.  I have no doubt that anyone who is praying through this suffering is receiving less than Gods complete mercy. 

 

Here are the medical issues

impacting Anthony’s health:      

 

 

WHAT IS HAPPENING?

Confirmed Implications

for Anthony’s Well Being

WHY IS THIS HAPPENING?

Medical Physiology

and Medical Diagnosis

 

Central Nervous System

 

Anthony has sleep apnea, central apnea and obstructive sleep apnea affecting his breathing and sleeping patterns with hypoxic episodes. 

Anthony appears to go into respiratory arrest yet it has been confirmed that it is his brain activity that is actually stopping and secondarily his heart rate slows down but does not stop.  It appears he is exhaling, turns blue and drops to 0% oxygen, but these are events occurring after his brain has flat lined.  He has seizure like symptoms in his body but his brain, in hypoxia, has no activity.  After two to three minutes, he gasps for air and all nervous system, respiratory and cardiac functions resume back to normal. 

Anthony has an underdeveloped cerebellum and agenesis of the corpus callosum that are believed to the source of this central nervous system disorder.  Anthony also has seizure disorder. 

 

Shortly after Anthony’s birth, physical attributes to his physiology were noted through a series of non invasive tests, such as MRI, x-ray and ultra-sound. 

 

 

Digestive

&

Renal

Anthony’s digestive system is unstable from the recent abdominal surgery and his ostomy sometimes tries to act like a third kidney.  Anthony is dumping fluids through his ostomy and we are replacing lost fluids through this central line.       

Anthony is not diagnosed with a Short Gut Syndrome (as doctors first speculated) but is suffering from secretory diarrhea with unknown cause.

 

Cardiac

Anthony has Congestive Heart Failure with hypoxic episodes being managed by medicines

Severe form of congenital ASD and VSD.

 

Pulmonary

Due to Anthony’s diagnoses, his lungs can easily get congested so we try to move him often to avoid fluid build up and keep his lungs open with preventative breathing treatments to avoid further complications

Anthony has pulmonary hypertension associated with congenital heart disease.

 

In short, Anthony remains strong in his will to survive.  It truly is the prayers of the faithful that sustain us.  A part of us is living each day as if it is his last – while another part is planning on how to survive through the tomorrows given our situation.  We are amazed by the miraculous stories of survivorship shared with us by many families close and far.  We have many stories that have been shared with us, amongst a few are stories of amazing NICU moments, birthdays (some as old as 47 years) and stories of prom dates.  These stories are inspiration to us because as we learned of our child’s Trisomy 13 diagnosis, we were told he was incompatible with life beyond the womb.  We have mourned the loss of his future, the loss of our expectations and when we see another family meeting these normal milestones amongst their Childs “incompatible with life” diagnosis, we are amazed in Gods ability to prove the world wrong.  Sadly, many of these children do not survive … but for some … they do survive … and for all these families and ours, I ask your prayers for peace, courage, strength and the grace of perseverance. 

 

For us and most families of a child diagnosed not to survive life, we struggle with challenges and take moments of respite in that God has the absolute dominion over life and death.  Our job as parents is to care for and comfort these little beings as long or as short as God has destined them to be with us.  Until the time arrives, our plan of care for Anthony is to keep him clean, free from infection and free from pain as much as possible, to provide him nutrition and hydration, even if through a tube and to allow him to live as normal a life possible given his medical situation.  As simple as that sounds, it is harder to carry out in a healthcare system not set up to manage patients like Anthony.  Our fight is to have our child not treated as a terminally ill patient in hospice, but as a medically fragile child who needs ongoing monitoring to compensate for the loss of temporary yet chronic conditions.  Our second responsibility to Anthony’s care is to surround ourselves with experts as much as possible and to educate ourselves as much as possible so we can navigate the waters of his syndrome, his healthcare advocacy along with our mental health.

 

So with that said, Rick and I have to be prepared for the full spectrum of life: from funeral arrangements of our infant son, to providing an appropriate life with our disabled child.  All the while, we remain responsible for providing a stable family life for Anthony’s three older brothers through these life experiences.  I hope you all realize that I am sincere when I say THANK YOU FOR YOUR FAITH FILLED PRAYERS.  We are grateful and humbled by all your acts of generosity and kindness towards our family during this stormy journey. 

 

I thank you for your prayers for all families in similar situations and for your prayerful intentions of the healthcare community (medical doctors and insurance companies alike) charged with the care of these little ones.  May God continue to bless you for your love, generosity and sharing of your spirit with others.  

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

June 30 and July 1, 2006

Day 57 & 58 - Condition Turns Grave

In addition to gram negative sepsis, Anthony has developed Pulmonary Edema caused by Acute Respiratory Distress (ARDS) and it is not from his congestive heart failure as most commonly diagnosed.  His heart is strong and compensating for the inability of the Oxygen to be absorbed and beating very fast to help get as much O2 to his body.  Unfortunately, the faster it beats, the less effective it is.  But it is a strong heart nonetheless.  He cannot keep his Oxygen saturation up on his own but we are trying make him as comfortable as possible using the canula and blow by. 

He does not appear to be in pain.  He is not overly responsive except for a few times when we speak.  He will make gesture like eye movements (like rolling his eyes at what we say) when we say something he finds particularly interesting.  But at times, he is awake but not turning his head too much, he appears very tired.  He will occasionally give us a smile or a smirk but is very much lethargic and weak from the effort it is taking him to breathe.  His heart has been racing all day like a really long cardio workout (about 200 beats per minute) and the force he is putting into trying to take a breath is only producing very shallow breathes and he is exhausted from breathing.  It is very hard to explain.  We are here by his side.  We thank you for your continued prayers and ask for your prayer of peace.  

With Love and much emotion,

Janina

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 

UPDATE AS OF JULY 2, 2006

Day 59 - Hospitilazation Ends

Anthony passes to Eternal Life

 

In a very peaceful moment and with the smile of an angel on his face,

Anthony passed away in moms arms late July 2, 2006 and began the journey of his eternal life.  Anthony would have been One year old just six days later on July 8, 2006.  There is every reason in Heaven and on Earth to celebrate his young life. 

 

Click here to go to Anthony's

 

Home Page | Our Family | Highlights | Overview

Prenatal Diagnosis | Birth Plan | Birth Day | Daily Life with Trisomy 13

T13 Medical History | Resourceful Links | Physicians Letters

Contact Us | Quotes | Photo Albums & Guest Book