“Journey with Jacob” 2010
Jacob E. Arrington
Born 12/3/06 w/Cloacal Exstrophy
(O.E.I.S)
The Arrington’s - Bryan,
Courtney, James (5) and Jacob (3).
Our
“Journey with Jacob” began in August of 2006.
Courtney was pregnant with our second child. We went in for a routine visit to find out
whether we were having a boy or a girl.
The technician performing the Ultrasound immediately noticed something
out of the ordinary with our little one.
She called in Courtney’s primary physician and both agreed it had
something to do with the baby’s bladder.
However, they felt that it was serious enough to where we needed to go
see high risk doctors at Erlanger. After
weeks of additional office visits, ultrasounds and opinions, the doctors
determined that our baby had an omphalocele (that is the “O” in the OEIS
designation above. More on the rest of
it later). This is a condition in which
the abdominal wall does not fully form and certain organs are outside of the
body at birth. It is not extremely rare,
occurring once in every 5,000-10,000 live births. During these visits we also determined that
we were having a baby boy. We
immediately began preparing for his birth, surgery and the estimated 4-6 week
stay in the hospital.
Then, about
six weeks prior to his due date, the Lord decided that it was time for Jacob to
come into this world. He was delivered
at Erlanger via C-Section and sent to the NICU.
He weighed 4lbs, 8 oz. The
surgeon on duty evaluated him and then came back to let us know the scoop. She advised that Jacob had something a little
more complex than what we originally thought.
In addition to the Omphalocele, he also had Exstrophy of the bladder
(meaning it was also outside of his body), Imperforate Anus (the plumbing was
not where it should be and his pelvic bones were way out of place due to a
30-40% loss of bone mass and lack of development) and Spina Bifida (O.E.I.S). In addition, he was also born with a clubbed
foot (his left). The surgeon advised
that they had never seen this complex condition before and they determined that
there were only two facilities in the US
that were known for handling it – one was Johns Hopkins and the other was
located in Seattle , WA
(We later discovered that the facility in Seattle Baltimore
With the
diagnosis and determination in place, our journey really began to “ramp” up at
this point. We got to spend 24 hours
with Jacob and then he was flown, via medical helicopter, to Johns
Hopkins. Once again, the Lord was there. The airline required payment in full before
they could transport Jacob. The amount
was large - $15,000.00. We only had
about $9000.00 available on a credit card, but one of our church elders, who
had come to pray with us and visit, had stayed a little longer. He agreed to cover the remaining $6000.00
with his personal credit card and Jacob was on his way. We were able to later reimburse him once we
coordinated with insurance, but that situation was definitely stressful. But He is good and He provides, according to His
good purposes.
Now, one of
us could have ridden with Jacob in the helicopter, but Courtney could not be
released from the hospital, yet, and Bryan
When we
arrived, we immediately went to visit him in the NICU. He was such a little guy and had all of these
tubes, monitors, etc hooked up to him.
Words don’t really do this justice, so we have placed a picture of him
on our blog. We’ll provide that web
address a little later. He had his first
major surgery that Friday (12/9). During
this surgery, they closed up the omphaocele (his intestines) and created an
ostomy (stoma for his poo), but his bladder remained on the outside of his
body. One week later, he had a second
surgery to correct/close a small valve (PDA) near his heart. This was not a huge surgery, but certainly
concerned us because of where it was located.
We did find out that this is not an uncommon procedure, and thankfully,
it went very well. We were also first
introduced to Dr. Gearhart, who, along with several other doctors, have, by
God’s grace, been a true blessing to us.
Jacob remained
in the NICU for a total of three weeks.
He was released right before Christmas and we were able to share
Christmas with some of our extended family there in the Baltimore
Upon
returning home, we had quite a routine to follow. You may recall that his bladder remained
outside of his body, even after the first two surgeries. This required us to keep saline and saran
wrap on his bladder at all times, with a diaper over top of it. His bladder basically “drained”
constantly. With a few weeks of
returning home, he came down with RSV (respiratory virus) and had to be
hospitalized for about a week. He was
not gaining weight, so the doctor put him on a special formula. Thankfully, he liked it pretty well. Since Jacob was born with a shortened colon
that required an ostomy, he did not always absorb his food and nutrients very
well. In addition, whenever he gets
sick, it seems to linger longer than normal.
He also becomes dehydrated much faster than a “normal” child. This formula worked, though, and we are again
thankful that the Lord led us to find it and also provided the means to be able
to get it (it was quite expensive).
Things
gradually improved for us during the next few months. We certainly had a good bit of help from our
family and friends, especially Courtney’s Mom.
We went to see a doctor here in Chattanooga
The summer
of that year (2007), we had gone to Baltimore
for some office visits at Hopkins
Thankfully,
the second time was a charm and the surgery was successful. However, the recovery was quite rough. Jacob developed an infection in his back at
the site where the surgery was performed.
He had to be readmitted to the hospital and ended up being there (at the
hospital or in the area) for a total of 27 days. Even after he returned home, a nurse had to
come in and treat these wounds for several weeks. In the end, though, Jacob was able to walk
and crawl fairly well, although his pelvic bone issues certainly restricted him
a bit.
As the year
2008 arrived, we continued to look forward to the “big” surgery. After speaking with our doctors and some
other families who had been dealt with this condition, we pretty well knew it
was coming, but weren’t sure when. The
surgery would involve both the Orthopedic and Urology physicians. There would actually be two surgeries that
would need to be performed fairly close to each other. The first would involve his pelvic bones and
the second would be for the purpose of closing up his bladder (which was still
outside of his body at that time). The
Orthopedic surgeon generally takes a conservative approach when it comes to
these things and while we were anxious for his bladder to be closed, we also
understood that the longer he was allowed to grow first, the better the chances
for success, especially with the pelvic surgery.
Just prior to the surgeries in July and August of 2008, we
began using a blog to chronicle our Journey from that point forward. For the “rest of the story”, please feel free
to visit our blog (we typically update it only when there is a procedure,
surgery or visit to Johns Hopkins or if an urgent prayer situation
arises). The website address is www.jacobarrington.blogspot.com. While the majority of this journey has
involved our younger son, Jacob, we have also had an adventure with our older
son, James. Just last year in August of
2009, he had two seizures, exactly a week apart. He was diagnosed with epilepsy and has been
on medication since then. Thankfully,
he has not had any significant seizures since that time. In addition, we have finally been able to
secure a visit with an Epilepsy specialist at Johns Hopkins.
In June of this year (2010), we will be returning to Johns
Hopkins for several office visits and a minor (hopefully) procedure for
Jacob. He has developed a concern with his
stoma and so we don’t know if he will end up needing a surgery to correct this
or not. It basically has “prolapsed”,
meaning that it is really protruding out from his body. It still seems to be working properly, but is
definitely a challenge. The biggest
concern right now is that he is going through a lot of colostomy bags,
sometimes 2-3 per day (they used to last 2-3 days or longer between changes).
The Lord truly is merciful and gracious, through all of the
ups and downs. Despite his physical shortcomings,
Jacob has developed a tremendous vocabulary.
He recently was able to “jump” a little and can even jog a little (in
his own special way).
We have included some additional photos and even a
“centerfold” picture of Jacob that appeared in a Johns Hopkins publication back
in 2008.
We thank you all for your continued prayers and this
wonderful demonstration of love that you all have shown to us through your
offer to assist us with our patio.
Through Christ Alone,
The Arrington’s
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