Thursday, November 17, 2011
My story is long and one filled with hope, happiness, and
devastation. It all began at 13 weeks when I found out we were expecting
identical twins during the NT scan. The doctor told me that the babies were
measuring a week apart – not something that was usually seen so early. He
showed me how Baby B’s umbilical placement was on the edge of the placenta
compared to Baby A’s placement in the center. At that appointment I first
learned about twin-to-twin transfusion syndrome (TTTS).
Pulmonary vein stenosis is a rare and serious condition in which there is an obstruction (blockage) in the blood vessels that bring oxygen-rich blood from the lungs back to the heart. It can be isolated to a single pulmonary vein, but most often occurs in multiple veins simultaneously.
The stenosis occurs due to an abnormal thickening and, thus, narrowing of the walls of the veins. Pulmonary vein stenosis frequently progresses. As a result, partial loss or even total obstruction of flow to a vessel or vessels may occur.
Surgery to widen the narrowed veins and catheterization to stretch the vessel are usually short-term solutions since the obstruction typically recurs within a month to six weeks. (source, Children’s Hospital Boston)
I immediately went online and reached out to the multiples
community; I was so overwhelmed and excited! Very quickly I learned that I
needed to be monitored closely. My doctor, though, had other ideas and didn’t
think I would need further monitoring and so wouldn’t schedule an ultrasound
until 20 weeks. But based on everything I was reading, that could possibly be
too late. In advance of my upcoming 16 week appointment, I called every single
perinatal doctor in my area; none would take a patient as a self-referral. One
finally did, and I made my appointment for the day following my 16w checkup. I
told the doctor about it, that my gut said something wasn’t right; she told me
I needed to relax and that an ultrasound at 16 weeks wouldn’t tell us anything.
I went to the appointment anyway.
At 16 weeks, my babies were measuring 3 weeks apart. They
immediately referred me to the TTTS specialists in Baltimore at the Center for
Advanced Fetal Care, the closest location to us. And thankfully this location
is only an hour from us. All my hopes and excitement about the pregnancy came
crashing to an abrupt end. I was terrified and devastated. I had to ban my
internet time for the weekend because reading the stories of TTTS survivors and
victims just ripped my heart out.
For the next 3 weeks I was monitored weekly in Baltimore by
the TTTS doctors. They determined that I did not have TTTS but rather severe,
selective IUGR in Baby B. I had none of the factors of TTTS (we had visible
bladders, the amniotic fluid was in normal ranges, etc). We also determined
over those appointments that Baby B’s umbilical cord had sporadic absent flow.
We learned that the flow could easily become a reversed flow. If that happened,
if we were at a viable point, we would
have to deliver immediately. We learned that if Baby B were to die in utero, a
distinct possibility, that we would have to deliver; because the babies shared
a placenta and so shared blood flow, if one of the babies died, then Baby A
could die or suffer severe neurological damage. We learned about umbilical cord
ligation: a laser surgery that would basically clamp baby B’s cord, killing
him, but ensuring the survival of Baby A. We learned about the laser surgery
for TTTS, but I didn’t have TTTS and so wouldn’t qualify.
At 20 weeks my regular care was transferred to the high risk
doctors in my local area. My first appointment with them was the standard 20
week scan. The benefit of having all the ultrasounds from week 16 on is that we
knew the baseline growth measurements for both babies. At 20 weeks, Baby B
didn’t grow at all. My local doctors immediately suggested the ligation
surgery. We were devastated. On the ultrasounds, little Baby B looked healthy;
he was just as active as his brother, just half the size. Two days later we
went back to Baltimore to get their opinions. We were given several options. We
chose the wait and see approach. The doctors there felt that because Baby B was
so small, if he did die in utero, the chances that Baby A would be affected
were minimal. We decided that Baby B’s fate was up to him – we wanted to give
him a chance.
The next week Baby B grew 19%. We were stunned! And at that
time we decided that we’d always give Baby B a chance. We kept having weekly
appointments, alternating between the doctors in Baltimore and the local high
risk doctors. I always felt like our local doctors thought we were making the
wrong decision; the Baltimore doctors never made me feel that way.
At 25 weeks, the local doctors admitted me to the hospital
for monitoring. There I received ultrasounds and Doppler studies twice a day; I
was the first one each morning and the last one each day. On the fourth day, we
were told that Baby B was in imminent danger and that we needed to deliver. But
we requested that our doctors contact Baltimore and see if they agreed. They
didn’t. I went in for another ultrasound, and the local doctors looked for
specific Doppler numbers; everything was in MY normal range. Not normal by any
other means, but normal for my case. I requested that I check out of the
hospital immediately. The stress they were causing each day was not good for me
or the babies. We arranged a plan where I’d return for twice weekly
monitoring. I returned twice more to the
doctors in Baltimore. At the last appointment, based on just the report
numbers, the doctor was confident that I would make it to 30 weeks. As we were
talking and planning the next several weeks, he decided he wanted to scan me
himself. He did, then stopped, and said that if the local high risk doctors
decided that I needed to deliver, he wouldn’t stop them again. We asked what
changed, but he couldn’t point to anything, just his gut instinct.
Two days later at my local appointment we saw that Baby B’s
Doppler showed reverse blood flow. Surprisingly, my husband and I argued. Could
we wait longer? What are our options? We finally decided that we’d played poker
with the babies long enough; keeping Baby B inside any longer was getting more
and more dangerous. It would be up to him now.
So a few hours later, I found myself up in surgery, at 27
weeks exactly.
Baby A was delivered, and we heard a cry. Sebastien was born
at 2lb 1oz. Baby B was delivered, and we heard silence. Samuel was born at 12
ounces. My doctor came over and said he was sorry about “the little one.” I
couldn’t tell what was happening. My husband was next to Sebastien, trying to
watch what was happening with Samuel. I heard alarms; my husband came back to
my side. The room was chaos. The neonatologist came over and said she’d done
everything she could for Samuel, asked if we wanted to say goodbye. She brought
him to us wrapped in a blanket. He was beautiful; he was tiny; I loved him so
much. My husband held him, I stroked his head, leaned over to kiss him, talked
to him. I told him I loved him, but it wasn’t his time. Please Sam. He moved. And he moved again. My husband and
I both gasped. My husband placed his finger on Sam’s chest; he could feel a
pulse. He called a nurse over, told her that he was moving, that there was a
pulse. The nurse said it was all reflex. But no, our baby was alive. My husband
took Sam over to the NICU team, asked them to please, please look at our baby
again. They did, but the entire time, many of the team was shaking their heads.
They gave Sam another dose of epinephrine. His heartbeat stabilized; they were
able to put a ventilator tube down his throat.
My husband followed the boys down to the NICU while I was
closed up and moved to recovery. I was told I couldn’t go see them until I
could sit fully upright without being sick. I remember being in recovery and
forcing my toes to move, forcing myself to try getting moving. In my hospital
room, I kept trying. Hours later I was finally able to be wheeled down. Sam after birth. |
Sebastien after birth. |
Cradling Sam. |
Cradling Sebastien. |
No matter how much you prepare, even having toured the NICU
and knowing what things would look like. Nothing can prepare you. We visited
Sebastien first. He was so tiny! He was doing well though and only on CPAP and
under the bili lights. I learned that I wouldn’t be able to hold him until his
umbilical line was removed. I learned about cradling, how to touch our delicate
babies. We then went to see Samuel He was teeny. His head was the size of a
racquetball. His body reminded me of a Barbie doll. Sam was on the high
frequency oscillator since that vent is much more gentle on the lungs. I was
afraid to touch him; but I found courage and gently placed my hands around him.
Sidenote: Months later we found out that the NICU had only
prepared one spot, only prepared tags for Baby A. They were told to only expect
one baby. I was horrified when I heard this, and so we asked around. Sam’s
nurse confirmed it; he was in the delivery room and when Sam wasn’t responding
he was sent back down. When Sam came down, the nurses, the staff stood in awe,
and then quickly got his paperwork completed.
Later that evening, the neonatologist on duty came to my
hospital room. She apologized and said she’d followed all guidance from the
preemie care standards (can’t remember the name of this). I told her that
nothing about my case had been clinical, that nothing had been standard or
normal. To please not treat Sam as a normal case, that if something wasn’t
working, to try something else, to please just give him a chance.
A favorite picture of Sam. |
Sam on CPAP |
Sam sleeping. |
The next months passed in a blur. We joked that Sebastien
was on cruise control. He only got sick once, an infection that antibiotics
wiped out; he was intubated for a day and a half during this. He does still
have a large PDA, but he shows no signs of any issues. We see the cardiologist
every 3 months to check its status. Will it have to be surgically closed one day?
We’ll see.
Sebastien and mom kangaroo together. |
Sebastien checks in on Sam. |
Sebastien takes a nap. |
Samuel’s journey was anything but cruise control. During his
first three weeks of life, he tripled his body weight! The poor baby was
literally starving in utero and was finally able to get the nutrition he
needed. He was on the oscillator for 6 weeks; the vent for 4. I was able to
hold him for the first time at 10 weeks. 10 weeks!!! He too had a PDA, and ASD,
and a VSD in his heart. We knew that the ASD would have to be closed at some
point, when he reached at least 10 pounds. We were smooth sailing finally, for
him anyway, and then he developed NEC. This happened within 24 hours of HMF
being added to his breastmilk. Was that the cause, we’ll never know. Rigorous
antibiotics treated him and we moved on again. Until he reached a certain point
with feeds and he’d get sick again. At that point we discussed doing
exploratory bowel surgery. I was nervous but wanted it; I want to fix what’s
wrong and move forward. But the neos, the surgeon, and the anesthesiologist
were not in agreement. So we got him well again and started over. This cycle
happened 3 times, each time he’d get sick when he reached a certain point.
During this time he had laser surgery for ROP, he bounced between the vent, the
cannula, and CPAP. Around the third time he got sick, he had another
echocardiogram. We learned he had something called pulmonary vein stenosis
(PVS). This was a devastating diagnosis as it’s incredibly rare and there’s no
real treatment.
Pulmonary vein stenosis is a rare and serious condition in which there is an obstruction (blockage) in the blood vessels that bring oxygen-rich blood from the lungs back to the heart. It can be isolated to a single pulmonary vein, but most often occurs in multiple veins simultaneously.
The stenosis occurs due to an abnormal thickening and, thus, narrowing of the walls of the veins. Pulmonary vein stenosis frequently progresses. As a result, partial loss or even total obstruction of flow to a vessel or vessels may occur.
Surgery to widen the narrowed veins and catheterization to stretch the vessel are usually short-term solutions since the obstruction typically recurs within a month to six weeks. (source, Children’s Hospital Boston)
We found very little information to research on this, only
that Children’s Hospital in Boston is really the only location doing major
research. Their current research involves chemotherapy drugs. That was just
horrific to me as I couldn’t imagine my Sam undergoing chemotherapy. We questioned why and how he could do so well
with this condition. We were told that frequently babies will do well, but when
their hearts give out, “they go fast.” To make matters worse, Sam also had
pulmonary hypertension. We asked our doctors to contact Boston, to find
out more information.
At this time, Sam went back on the vent. Our hospital has a
policy that vented babies cannot be held as the risk of extubation is too high. With our diagnosis, I didn’t care. I
knew our time could be limited; I was going to hold my baby damnit, so figure
it out. We’d been there with Sam for 4 months now, so the nurses knew me, knew
I understood the risks, knew how to handle the situation. Getting him out and
transferred to me was a complicated dance that involved two nurses and a
respiratory therapist, but it was possible.
In the meantime we knew we needed to fix Sam’s belly. We
couldn’t grow him big enough for the various surgeries he needed if we couldn’t
feed him. Being on the IV nutrition was wreaking havoc on his liver (he was on
an experimental drug called Omegaven to help with this). We were finally at a point where all doctors
agreed, that to move forward we had to go in and see what was happening with
his belly. Waiting during that surgery was tense. But it was a success. When
his intestines were healing from the NEC, they fused together at two points. A
small enough passage way was there for food to pass, but not much. So once more
food was introduced, everything got backed up. We knew the recovery from
surgery would be rough, and it was. Each time they’d try to wean his pain meds was
a failure. I hated that my baby needed morphine and other pain meds.
The Sunday before he passed was one of the good visits. He
was alert and responsive to us. The very next day, on Monday, he seemed off,
not responsive, not doing well. That
evening we got the phone call. Sam wasn’t responding, they couldn’t keep his
oxygen saturation up. They called in the cardiologist to do an echo. We could
just tell that his heart was enlarged, that it was working incredibly hard, yet
it couldn’t pump blood. We were told that they could try a medication, that
we’d know soon after whether it was working. We were told about chest tubes,
etc. But we knew. At that point, he was being bagged because the vent wasn’t
working for him anymore; they started chest compressions. We told them to stop.
Sam was unhooked from everything and brought to us in a
room. I was able to hold him in his final moments. I felt him take his last
breaths. We held him, sang to him, read him his favorite book, kissed him. And
finally said goodbye. Our nurse was crying; the neo was shaking.
Sam's memorial garden. |
At five months and one day, we lost our son Sam. He was an
amazing baby, overcame more than some adults ever have to overcome. He found a
hard battle.
I’m leaving out so much with Sam’s story. It’s just so hard
to know what to say about it, what to include, what to leave out. The full
journey is detailed on the blog. As we’re coming up on a year of everything,
I’m doing a retrospective on it, including some details that were previously
left out, including my thoughts from a year later.
Sebastien today! |
Footprint comparison. |
Labels:
birth story,
loss,
multiples
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