5/30. Another one of
those big days in our little family’s life - especially amongst our smallest
members. We met with the surgeons that
would be attending/performing River’s reconstruction as well as the
anesthesiologist and his nurse staff prior to the surgery. Through the imaging they were able to
determine that all of River’s lower GI was present and intact though the Rectum
did not connect to the anus. In fact,
there was no anus. There were fissures
which were leaking GI waste (not food waste because he has not consumed
anything yet in his short life), but those tiny holes were not where the anus
should be, nor were they significant enough to pass solid waste. So, they had to create an anus, opening it to
the sphincter muscles which are required for control of waste evacuation and
then attach the rectum to this structure because it was detached at birth. The question we had going in which had no
answer at the time was if the sphincter muscles were present. When Dr. Dickie (colorectal), Dr. Tiao (surgical
director liver transplantation) and the attending resident entered Bryce’s room
where we awaited news from the team working on River, we were elated to learn
that not only were they able to connect everything and create an anus in the
proper place, but they even tested the sphincter muscles which were developed
and present through stimulation and they appeared to work well and be ready for
service at the proper time. When we were
admitted to see River in the NICU, he looked and acted perfectly normal as the
pictures demonstrate. While it is not a
guarantee that River’s lower GI will function properly when he comes of the age
to call upon its regulating services, it is most likely that he will be
perfectly normal in that function.
5/31/13
Today began on a high note.
Nicole was discharged from the hospital and moved in with me (her
husband) at the Ronald McDonald House across the street Children’s where our
two boys are residing. She had a clip in
her step with the taste of freedom for the first time in many months, the first
time out of a hospital in almost six weeks.
I wanted to take her picture with Ronald and celebrate with brownies and
smiles. But, we decided to scoot on over
to see our boys. Optimistic. The Cardiology team anticipated discharging
Bryce to the NICU to be with his brother River at the beginning of the coming
week. The neonatologist was not so sure
things would align so fast for that to happen.
But everyone seems to understand how important it is to get our boys in
close proximity being as they are not just identical twins, but TTTS twins that
shared a placenta, shared some fluid and flow and ultimately, shared the same
sac and braided their umbilical cords.
Twins, when young seem to grow and thrive better with one another. Optimistic.
River looked so great post-op yesterday.
From the outside, with his diaper on, you never would have known that he
had major surgery the same day. After
one heck of a stormy ride, we finally felt some tail-winds blowing us into the
clear. Cardiology would not permit a
move for Bryce until his ductus arteriosus had not just functionally closed,
but structurally closed so they could rest secure that it could not be reopened
by significant pressure. So the echo was
today, this morning, and it was supposed to be uneventful. I dropped Nicole off with Bryce but before I
took off to check on River downstairs, the cardiologist came in somewhat
frantic. He knew that we wanted to get
down to see River but wanted to give us word prelim on the echo find though the
imaging had not been fully read.
That’s when the emotional tone of the day was altered, but
not so dramatically. He suggested he saw
coarchtation of the descending aorta which is basically a constriction in the
main blood line to the lower body much like Nicole experiences in her trachea
with the stenosis. When this occurs it
is most commonly triggered by the closing of the ductus which
is essentially a fetal shunting line which attaches to the descending aorta
near the top before the arch down. Yet
Bryce’s coarchtation was much lower down the line. But this was based on a preliminary reading
and though he was concerned he was not convinced and had ordered a CT Scan to
double check with better soft-tissue imaging.
So we held on, but remained moderately chipper and optimistic that we
would dodge a bullet. That was until I
came back upstairs from visiting River and ran into Dr. Michaelfelder in the
hall. He was headed for Bryce’s
room. Michaelfelder is head of fetal and
pediatric cardiology here in Cincinnati and he was principal over our case in
utero. As he and I walked in the all I
really didn’t think much about it till we got to the room and our CICU
cardiologist was there to deliver the report.
The room was somewhat full when he started as the NICU had sent two
nurses to care for Bryce today, the principal nurse coordinator was on hand
along with the two cardiologists and Nicole and I. A closer look left no doubt of the
diagnosis. They also discovered that the
atypical placement of the constricted area was caused by the very low
connection of the ductus arteriosus. The
CT scan was no longer needed for confirmation, but to map out a surgical
approach to the affected area of the descending aorta – ie, whether they would
enter through the chest by cutting his sternum open or the side by separating
the ribs. Bryce’s BP measured in his arm
was much higher than that measured in the leg further demonstrating that the
kidneys were sending a signal to the left ventricle that they were not getting
enough blood so it needed to increase output
but in so doing ran up the pressure in the in the upper portion of the
body where there was no arterial restriction in blood flow. Bryce would have to be opened up after all,
for an issue entirely unrelated to the severe tricuspid regurgitation and
severely enlarged right atrium. And it
would have to be done fast if we wanted to avoid the use of PGE, a drug used to
keep the ductus open so blood can be shunted away from the affected area. The reason we want to avoid the use of PGE is
because of the side effects in its use.
No treatment would lead to cardiac failure as both sides of the heart
were being made to work at unsustainable levels for different reasons. But he would first loose the use and blood
flow in his lower body, starting with his legs turning white. This all hit us like a led hammer in the
gut. I kept face to conduct the
conversation and inquiry while Nicole simply recoiled and melted into
tears. I explained that she had been
through a tremendous amount and had not vented the emotion for some time and
had certainly come due. They were not
surprised at all and understood exactly why she might react that way. Both boys having to undergo somewhat major
surgery in their first week of life, both for reasons not anticipated after all
the anticipated difficulties were more than enough to produce some
let-off.
So our feelings about the day, our energy levels and gung-ho
were altered. From optimism, to
discouragement to resignation and reflection.
As I walked the lower halls to get an afternoon snack from the cafeteria
my heart burned to have my family back together again, with our boys, whole,
rebuilding our relationship with our beloved Eden who is growing so much without
us and to have the cheer and support of all our adoring children. They come, I go, we have a glimpse, then it
ends and it always feels like something is torn out of me when I go or they go
and Nicole went three weeks without seeing any of the children. Nicole pined for a bit of normalcy tonight
after we fell into the bed for the first time side by side. She wanted to paint the girls nails, read
them a book, HOLD EDEN – something she has not been able to do since
February. Even when we were home post
TTTS-op, she had to watch the kids rather than hands on participate. Now the babies are out and she is in pain and
recovering and weak, but the fear for the boys within and the restrictions are
somewhat altered, somewhat lifted and she, we, want to be a family together
again – it has now been almost six weeks away.
And it’s just so hard to keep them here as we focus on the boys and
there are all manner of restrictions on kids visiting the NICU or CICU and we
are a large family with space issues and a high maintenance, high-energy Eden
as well. So we had to let them go early
this last time because when it became clear that River was in for surgery, as
much as we wanted them here, we just could not juggle it all, even with all the
help.
Yet, there is good as well.
The surgery does require them to open the chest but not the heart. It does not require by-pass. It is a somewhat simple resection though it
will take some time and his tiny frame so frail and tiny present other unique
challenges. It has become more and more
apparent that we are in the right place and that our landing here and “getting
stuck” here in April was not an accident.
Every department, every nurse has impressed us. We have now worked with several surgeons,
Cardiology, ENT, Colorectal (GI), Fetal Care, and Neonatology and we have been
so impressed and touched by their care and the level of their concern for our
entire experience. We were visited by a
social worker, the charge nurses on both floors, a pastor, and a massage/touch
therapist just today. Everywhere we go folks are aware of our boys, their
story, even their names. And everyone is
working to get them together and get us home.
Nothing has gone like we wanted it to, but it has gone as well as it
could for a painful situation. And
though Eden has now formed care relationships with Kelly, Peggers, and Laura
rather than her parents, we know that a bit of time back together and we will
be her go-to again. And these trials
have tightened us, and given our kids an even greater longing, care,
compassion, and love for their two new brothers. I have to take inventory of the blessings
even as the storms blow over to prevent myself from sinking into silly places
of self-pity, even despair. And I do, we
do, we know we rest in the most unyielding love imaginable in the care of our
creator. The roller-coater
continues. It now looks to be five, six
weeks or more before our family will be hole and we will be home. We may loose our whole summer with our kids
but I do believe we will make it through and I still believe we will all be the
better from it. As a matter of fact, if
I had a dollar for every time our big five have been complimented to me while
they have been here, I would be a rich man.
Folks literally stared as we ate our lunch at the RMH on Wednesday and
before we got up two mothers could not resist stating how amazed they were at
how we functioned together, and how well behaved the kids were. Even the NICU nurse on another case came up
to me out of her way to rave about our kids and the Child Life Social Worker
that escorted the kids around the hospital could not stop telling us how
beautiful and well behaved they are.
Indeed, we have been blessed. Our
kids have been a blessing rather than a burden through this tough time. And my family has been amazing, especially
Peggers and Kelly and the kids adopted aunt Laura. Our
twins are strong, and beautiful and obviously demonstrating their acceptance
and resolve. We are blessed even though
we are tried and we hurt.
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