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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 hernia. While 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.
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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:
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WHAT IS HAPPENING?
Confirmed Implications
for Anthony’s Well
Being |
WHY IS THIS HAPPENING?
Medical Physiology
and Medical Diagnosis |
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Central Nervous
System
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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.
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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. |
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Cardiac |
Anthony has Congestive Heart Failure with hypoxic episodes being managed by medicines |
Severe form of congenital ASD and VSD. |
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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.
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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
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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
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