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Joseph was born on July 27, 2005 at North
Florida Regional Medical Center. He weighed 9 lbs and was 22
inches long. Lacy was incredible during the labor and delivery,
and we were overcome when our son finally arrived. The photo
above was taken by my mom just seconds after Little Joey was
born.
Unfortunately, it became apparent that his
color was not right. Most babies have a bluish appearance when
they are born. This rapidly changes when the lungs inflate and
oxygen-rich blood goes through the body giving it a nice pink
color. J-III did not turn that pink color so they took him to
test his lungs. After a moment of examination at Lacy's bedside
they decided to take him to the nursery to examine him more
closely. I followed him there as they looked him over. After a
moment they asked me to leave so that they could intubate him,
or put a tube down his throat to help him get more oxygen. I
left the room as they started not really knowing what it all
meant.
We waited for a few minutes, expecting that
all would surely be well and they would bring him back to our
room. After a time our nurse midwife Ann Marie Fenn, OB-GYN
Anthony Agrios, and pediatrician Marci Slayton walked in to
discuss what was going on with Joey. At that point we were told
that the level of oxygen that he was receiving was not
sufficient and that our sick little boy would need to be
transported to Shands Hospital at the University of Florida very
soon. Needless to say, we were both shocked. Thus continued a
very long day.
We were told that there were at least two
possible causes for his condition- a diaphragmatic hernia or a
heart defect. I think we were both still in shock, and it took
some time for me to understand what all of that meant. I should
take the time to point out that everything in this pregnancy had
been wonderful, from Lacy's health to the entire labor and
delivery up to that point. The occurrence of his condition only
further highlighted some of the other things that went right.
That day a neonatologist from Shands was on
his normal visit to North Florida and he was able to see Joseph
right away. He prescribed a drug that improved Joey's oxygen
levels, so that he was a pale white color, rather than the
unusual blue. Dr. Morse (the neonatologist) referred him to
Shands very soon, and the helicopter was able to take him there
within 1 1/2 hours after birth. All of these things were a
blessing for us, in the midst of a very scary time. All of the
staff at North Florida were fantastic, and attended to Lacy and
me with so much compassion and concern. Additionally, two of
Lacy's friends from her time working as a diabetes research
assistant, Jen and Liz, were there to care for her when I went
to Shands to see to Joseph. There were so many people there who
had a part in her recovery. Our hearts are full of gratitude for
them.
As much as any of these occurrences, faith
played a major role in our ability to cope with what was going
on. Before he was taken to Shands from North Florida, my father
and I had time to give him a priesthood blessing. It was
difficult for me to put my hands on his little head and then
focus on what Heavenly Father had in mind for this little guy.
I felt very peaceful and knew that Heavenly Father would watch
over him and those taking care of him. That peaceful feeling
has been with me since that time, and I know that he is being
watched over by Heavenly Father.
Joseph arrived at Shands that morning and was
immediately subjected to a whole series of tests. They
diagnosed him with a defect called Transposition of the Great
Arteries. This page from the
Cincinnati Children's Hospital explains the nature of this
defect. If left uncorrected, it is usually a fatal defect.
Fortunately, the doctors at Shands Hospital, specifically Dr.
Paolillo with the help of others, performed a heart
catheterization procedure called a septostomy. This procedure
widens an existing space between the left and right ventricles
of the heart to allow mixing of oxygen-rich and oxygen-poor
blood. This allowed his oxygen saturation levels to improve so
that the major surgery is no longer considered an emergency.
Now it was time to determine where it should be performed.
Surgery on congenital heart defects is a
highly specialized field. After consulting with one of the
cardiologists at Shands we agreed that Miami Children's Hospital
provided the best mix of expert surgeons and convenience for us,
owing to my family presence there. After they contacted the
hospital in Miami,
they were
told that they would come pick him up by jet that day
(Thursday, July 28th). We waited at Shands until they took him,
planning to follow him the next day. We arrived in Miami in
time to visit Joey before going to my Uncle & Aunt's house, Ari
& Kelly Sastre for some much needed rest after a long day.
Joseph was stable, and we felt good about the people caring for
him.
Today is Sunday, July 31st. Joseph continues
to be stable, and we await his surgery, scheduled for Tuesday,
August 2nd. The surgery is called an arterial switch. The
surgeon will take the aorta and the pulmonary artery and switch
them. This is the easy part of the procedure. The more
delicate part of the surgery is moving the coronary arteries to
the right place. All of Joseph's blood vessels are small, but
the coronary arteries are very small. We feel very fortunate
that our surgeon is highly skilled and very experienced.
Additionally, Transposition is a common defect, and he
has a lot of experience repairing this kind of condition. I
will update this page with news on his condition as I can.
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Monday passed without incident. Sunday night
was especially nice, because the nurse asked us if we wanted to
give Joseph a bath. I changed his diaper for the first time.
We went home tired, happy to have been able to participate in
his care in a more meaningful way. Monday we met with Cristi, a
nurse practitioner in the practice of
Dr. Redmond Burke, the surgeon who would be performing the
procedure. She explained what we should expect to occur. I'll
provide a run-down of the procedure as I understand it:
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Joseph is taken from the ICU by several
nurses and the anesthesiologist to the operating room, where
he will be connected to all the necessary machines. He is
sedated and prepared for the surgery to begin.
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A person known as the profusionist prepares
the heart-lung bypass machine. In order for this to work
properly, they have to reroute the blood away from the heart
and lungs. Because blood wants to clot when it leaves the
body, they must use blood thinners to keep it flowing. This
allows the doctor to stop the heart so that the procedure
can be performed.
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The doctor can now begin the surgery,
severing the aorta and pulmonary artery above the heart
valves. The arteries are then switched, reattached with
hundreds of tiny stitches.
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Perhaps the most difficult part of the
surgery comes next, where the coronary arteries are moved.
The coronary arteries supply blood and oxygen to the heart
muscle. These too must be reattached to insure that the
heart gets nourishment. These are very small in an adult,
and tiny in a child. Once again, much precision and many,
many stitches are required.
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Some time after the above procedure, he is
removed from the bypass machine (hopefully) so that normal
blood flow can be restored to the heart. This will allow
the doctor to see that the heart is pumping normally and
that there are no leaks in any of the valves.
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At this point, his chest may or may not be
closed, and the amount of time on the ventilator will vary.
We are hopeful that he will be able to go home in about 2
weeks. During that 2 weeks many things will occur, and I
will keep a record of that here.
The highlight of Monday occurred about
6:30pm. Our nurse at the time, Luisa, told Lacy that she should
go to the bathroom because if she was going to hold the baby,
she wouldn't be able to get up. Needless to say, this overjoyed
her as she has been unable to hold him since the birth. When he
was placed on her after being born, there was so much commotion
that this constituted the first real time she has had to hold
him in her arms. It was very emotional for both of us (I was
fairly jealous) and he was calm and seemed so happy to be in his
mom's arms. I gave him a father's blessing while he was there.
She held him for almost an hour before it was time for us to go
back to Ari & Kelly's house for dinner and sleep. Tuesday would
be a long day.
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We got to the hospital this morning (Tuesday,
August 2nd) at about 6:45am. Joseph looked very peaceful, and
had a good night's rest according to Susie, his nurse. We had a
few moments with him, snapped a few photos, and waited for Dr.
Burke. He arrived and had a very reassuring manner. He
explained a few things, and assured us that he would be gentle
and do his best for Joey. We asked him if we could have a
prayer with him, and he agreed. We accompanied Joseph to the
opening of the operating room and returned to wait. At 9:30 we
got an update that he was on the bypass machine and that we
would hear from them again at 11am. We are calmer than
expected, and have faith that Heavenly Father will hear our
prayers and watch over our son.
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As we sat talking at about 12:30, Linda
(another Nurse Practitioner from Dr. Burke's practice) came in
to tell us that the surgery was completed and that they were
able to seal his chest. This was great news, and seemed earlier
than expected. Shortly thereafter, Dr. Burke came in to discuss
the surgery, showed us some pictures of his tiny heart, and told
us that Joseph would be out shortly. He came out and the change
in his color was astounding. He almost looked like a different
baby. We are so grateful, and know that the fasting and many
prayers on his behalf were instrumental during this time.
We just went in to see him (2pm). The past
six days made us accustomed to the sight of his little body and
all the different tubes that helped him gain strength. As you
can imagine, the number of tubes in his body post-operation seem
to have multiplied. It still fills us with some apprehension to
see him like that, but the peace that I've felt since shortly
after we learned of his condition continues. We sat in his room
for a while and watch him enjoy heavily sedated slumber. Very
tired, we returned to the house to get some rest.
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We went to the hospital today and were
excited to hear that they were going to extubate him. We did
not expect this for at least another day, so it was a real
relief to be able to look at his face. His swelling improved as
well. The most difficult part of the post-surgery period is the
waiting. It may yet be several weeks before we can take him
home, so in the mean time we wait as various tubes are removed
day by day. We see more and more of his personality (he has
blue eyes) and feel a little bit more like real parents. He is
a beautiful little boy, and I feel so grateful for his good
recovery. Even Dr. Burke, the surgeon, mentioned today that he
is a strong baby and having a very fast recovery. I just need
to be patient and trust that all will continue to go well. Once
again, Lacy and I discuss how blessed we are.
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Two days have passed since the surgery and
Joseph's progress is exceptional. I came to the hospital this
morning to see how he was doing and Dr. Bolivar, one of the
cardiologists, mentioned that Joseph's progress was "amazing."
He also added that he was on pace for one of the fastest
recoveries they have ever had. The only concern was a collapsed
lung that they optimistic about. It seems to be normal for
someone who has been on a heart-lung machine and who has all of
the accompanying secretions. This will probably take some time
to pass.
Today was markedly better than yesterday. It
is hard to watch him there, and today was so much more
interactive. I got to hold him for the first time, and Lacy was
able to feed him some breastmilk. His stomach was able to keep
it all down without a problem, and so we are hopeful that they
will be able to shift him to 100% breastmilk within a short
period of time.
We also continue to be impressed with the
breadth and quantity of prayers offered for Joseph. We received
a nice teddy bear and some ballons from Investacorp, the
Broker-Dealer with whom I am a registered securities
representative. My father spoke with the CEO Bruce Swiegart, a
very nice man, and he mentioned that some individuals confessed
that while not normally inclined to pray, they felt impressed to
pray for Joseph. He has been prayed for by Catholics,
Protestants, Mormons, and Jews in Churches, Chapels, and
Temples. His welfare has been the source of fasting and
pleading. All of this for one small child, my child. It
overcomes me to think of it, and fills me with gratitude. My
own life has been so free of trials. The outpouring of love on
his behalf is a source of strength and promotes my own faith.
All of this makes me think of the man who
pleaded for healing from the Savior. He said, "I believe...Help
thou mine unbelief." This was my prayer for my son, and the
Lord has answered it and continues to answer it. This great
blessing is not without price, for the responsibility it places
on Lacy and me is to teach him to love and serve God and his
fellow man. This means that our own lives must be consistent
with that goal. Sometimes these kinds of prayers are not
answered the way that we want them to be. Lacy and I feel very
fortunate that ours was answered in the desired way, and we feel
like something is expected of us as a result.
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August 5th- my birthday. I have everything
that I could want- a loving wife and a healthy (and improving)
son. I have seen the power of faith manifest in the life of my
son, and that gift will last much longer than the other things I
might hope for. I am also impressed by how blessed we are with
regard to Joseph's heart condition being limited in scope. Many
of the infants here in the Cardiac ICU are very small or have
multiple significant defects. We can anticipate no further
surgeries and a normal life for Joey. That is another gift.
I ran to the hospital to deliver some
breastmilk and then Lacy's mom, my mom, Lacy and I went to the
Gables Diner for a big birthday breakfast. Since then we've
spent a great day with Joseph ( I fed him for the first time).
Soon we will be heading back to Ari & Kelly's for some birthday
pizza, and then perhaps back to the hospital tonight. Lacy's
mom heads back to California tomorrow, and it has been wonderful
having both of our moms here to see us and the baby. We will
miss her when she leaves.
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I had a great little birthday party, a
surprise by Kelly & Ari, and we had a nice night with everyone,
which included missing our little guy. August 6th was a nice
day as well, as Joseph's condition continued to improve. He had
been eating expressed breastmilk from the bottle for the past
two days, and they told us that Lacy could try to breastfeed him
directly. Immediately he latched on to Lacy, and although the
duration of the feeding was not all that long, it was
promising. By the end of the day she had nursed several times
and he seemed to be a natural. We went home pretty happy, but
it gets harder to leave him each day.
I spoke to a father whose daughter has the
same condition. She has not yet received the arterial switch
operation, and I could see on the father's face the same look
that I must have had. Even having passed through the same
situation, I find it hard to put myself back in his shoes, so
different do I feel today. Additionally, the complexity of
these procedures is such that I could hardly promise him
anything based on our experience. I do have great confidence in
the Dr. Burke, and I told him as much. Even giving all due
credit to Dr. Burke's prowess, I have to attribute a lot of
Joey's success to Heavenly Father.
As if to further punctuate this, J-III was
moved out of the ICU to what they call "The Floor." We share a
room with a young kid named Joe (so at one point there were 4
Joe's in one room) and he is nice and keeps the volume down. We
were surprised to be moving from the ICU so soon. They told us
that Joe was just too healthy for the ICU. One step closer to
going home. This also means that we are responsible for more of
his care, and that Lacy can stay here overnight to nurse him.
We are not happy about the separation and are even more eager to
get home. Of course our concern from Joseph outweighs this
desire, but I do think that we will be home by next Friday at
the latest. That would be fantastic.
Some of you may noticed that I refer to
Joseph by several different names (Joseph, Joey, J-III). The
reason is that we still haven't figured out what to call him. I
like J-III for fun. Its like his street name, or rap name. I
know that some in the family like Lacy's sister Lillie like Joey
for him. Lacy has yet to weigh in with her firm choice. Maybe
when we get home this decision will fall into place for us.
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Sunday was our first night in a regular room
and it was a long, tiring night. We quickly realized how
pampered we were in the ICU with regard to the amount of nursing
care that he received. We are grateful to have him close to us
though, and look forward to having him home for good. Monday
was a lot of sitting, with some errands thrown in, as we waited
for Joseph's progress. By Monday night he was free of any
oxygen tubes of any kind and had a much better night (or at
least, I had a much better night). Monday morning the doctor
mentioned that he would like for us to be able to leave in a few
days. We didn't know exactly what that meant.
When the doctors came by for rounds Tuesday
morning, we were so close to being discharged. They elected to
keep him in the hospital for one more day, just to check on his
chest congestion. The day has passed without incident, and as I
type this at 10:49 on Tuesday August 9th, it is with confidence
that Wednesday is a day of liberation for all of us, and only 8
days after surgery. I keep looking around for Joseph's gold
medal, but I guess they don't actually have anything like that.
We are so glad to be going home. We have developed a pattern
here that is workable, but the idea of going home is the utopian
ideal.
I feel like I should reiterate how fortunate
we have been at every step of the way. Everyone we have
interacted with has been wonderful, within the hospitals and
without. Things like this bring out the goodness in all of us.
I can honestly say I am grateful for trials.
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It is now the evening of August 14th and we
have been home for several days. The routine of being a
"normal" parent is decidedly lacking in routine. There have
been a few sleepless nights, for Lacy mostly, and a few days
where it seemed like all the little guy wanted to do was eat
(another thing that has affected Lacy primarily). Still, for
all these minor inconveniences, we are so glad to be home.
After all, it will take some time for Joey to establish the
behaviors that he was unable to learn over the time that he was
in the hospital.
I went to Church today and I felt
overwhelming gratitude, for God, family, and friends. My heart
was full, and it was hard to keep all my feelings in check. I
don't think I could describe them in a way that makes any sense,
but they were there and in full effect. I know that the trials
of parenthood will be many and varied, but Lacy and I have
established the foundation upon which to build our future.
We're so fortunate that Joseph will be a part of that.
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