October 1, 2009 - Birth day
I had a normal pregnancy,
ending with a scheduled Cesarean Delivery due to my baby’s breach
presentation. Maggie was born on Thursday, October 1, 2009,
weighing in at 9 lbs, 3 oz – a big baby who looked amazing and
healthy, until she turned blue.
Immediately, she was given
blow-by oxygen, stabilized and transferred to the NICU in the local
hospital where I delivered her. Three days later, when I went home,
she came home. What followed for the next 9 months was nothing short
of a parent’s worst nightmare.
I took Maggie to her
pediatrician for her routine 5-day well-check. The pediatrician did
not like the way Maggie was breathing. She had very strong retractions
(pulling in of the chest & stomach) and very shallow breathing.
The pediatrician's first action
was to rule out Mitochondrial Disease, have x-rays completed, and
blood work drawn.
I drove Maggie over to the local hospital for the
x-rays and blood work. I was told to wait at the hospital for the
doctor to call me with the results. I waited & the blood work
came back relatively normal, so I was sent home with Maggie to wait
for the x-ray results. The doctor called me later that evening and
said “it appears that her right lung has collapsed”. Well, of
course, I flipped out! “But,” she continued, “the NICU doctor
looked at her original x-rays and thought there was improvement, so
we’ll keep an eye on that.” In the meantime, 2 days later, I met
with the local pediatric cardiologist. They did an EKG, ultrasound,
and non-stress test. Her heart appeared to be fine.
A week later, I took her
in to the pediatrician for her 2 week routine check-up. Same
practice, different doctor. She was alarmed by her rapid breathing
and immediately left the room. She came back and said that she was
going to have Maggie admitted to Fairfax Hospital for evaluation,
that she did not like the way she was breathing and we need to get to
the bottom of it.
In the pouring rain, I drove to Fairfax Hospital
(about 40 minutes away with no traffic, which never happens in
Northern Virginia). Once there, I went to the admissions desk &
was told that there was a room ready for my daughter on the pediatric
floor. I was scared because I knew the flu & H1N1 were running
rampant in our area. Maggie and I were met by two nurses who
immediately hooked Maggie up to every piece of equipment possible and
decided to run an “ng” tube into her nose! I had no clue what was
going on & I was just crying & calling my husband
frantically. All the while, our 2 older sons were at home with a
neighbor. The next day, after a torturous night of sleep, the
doctors ran a CT scan on Maggie. There did appear to be collapse in
her right lung. From what we understood for the 5-day stay there,
upon discharge, all of this should be outgrown in about 2 weeks or
so. I left the hospital on a Tuesday with a prescription sheet for
an x-ray and a follow-up doctor appointment in 2 weeks.
At home, things seemed
normal for Maggie. She slept a lot and didn’t have much of an
appetite because she tired easily. But that Thursday, I noticed –
there had been NO change in her & I was concerned. There must be
another doctor I could call. So I called the pediatrician (who
admitted Maggie to Fairfax Hospital) and asked her for another
pulmonologist’s name. She said “If I am that concerned, bring
her in.” So I did. Again, I sent my older 2 sons to the
neighbors (thank God for good neighbors!).
The doctor didn’t like
the way Maggie was semi-unresponsive and decided to put a pulse-ox
monitor on her. It read 84%, which to me means “Oh crap!” To
the doctor and nurse, it meant “Call 911.” So, again, I was
panicking and crying, unsure of what was going on. We were sent
off to the local ER to be stabilized (again, rampant with the flu & H1N1, which
probably could have killed this baby).
Since we
had already been to the closest “specialist” hospital, we needed
to make a choice where to go next. The only place I could think of
was Children’s National Medical Center (CNMC) in Washington, DC.
At 2 am, after switching
places with my husband, Maggie was transferred to CNMC by ambulance.
She immediately had a spinal tap which revealed nothing. She was
hooked up again to the NG tube and oxygen, but this time was placed
into the NICU’s care. She was the biggest baby they’d ever seen.
She was there for the next 2 weeks, for her first Halloween and a few days following. There were tests and more tests
and many sleepless nights. My husband was working full-time, so he would
usually take the night shift, while I would come in to the city after
rush hour & stay all day. We never left her side.
November, 2009 - One Month Old
On November
5, she was
released on ¼ liter of oxygen, nightly NG feeds to raise her calorie
intake which would help her (and her lungs) grow, nebulizer
medications (Pulmicort and Atrovent), and Prevacid since it was found
that she had acid reflux. We were still no closer to a diagnosis and just had a routine to keep her status quo with frequent follow-up
appointments.
On December 22,
Maggie had a VQ Scan at CNMC, which showed “possible” congenital
lobar emphysema. She did not fit the profile for the disease, but it
was suggested.
February, 2010 - Four Months Old
On Saturday February 6,
2010, 36” of snow fell in our area. Maggie’s condition was
declining. She was coughing a lot and just wasn’t her normal,
happy self. My husband and I decided to give her one final nebulizer
treatment before making the decision to call 911. Thankfully, our
road had been well-plowed earlier that day so the ambulance and life
support trucks arrived quickly.
Maggie was taken to our local
hospital & put into a room on the pediatric floor. On Monday,
February 8,
2010, the decision was made to transfer Maggie to CNMC. However, our
area was expecting another 15-20” of snow that evening. At 1 pm,
the decision was made that she would be airlifted to CNMC.
Unfortunately, I could not travel with her, so I waited for my
husband to pick me up to take me to DC to be with her. As soon as we
crossed into DC, I received a call from the Flight Nurse who said
“Maggie’s condition worsened and we needed to intubate her.” While I
knew it was a possibility, I still didn’t expect it.
We rushed
to her side in the PICU pod (6 beds in a large room) where she was on
a ventilator and had tubes going everywhere. It was the scariest
time in my life.
She was found to have
“Human Meta-pneumovirus" (hMPV, which is very similar to RSV). On
Saturday February 13,
6 days after being intubated, I had a long talk with the doctor about
Maggie. I thought this was “the end”. How could I keep my child
on a ventilator? What quality of life was this?
The doctor,
probably wanting to slap me, talked to me directly “We are talking
about one organ, we can handle this. She
can handle this.”
That being said, I had a big heart-to-heart with
Maggie on the eve of her 1st
Valentine’s Day. That next day, after morning rounds, the doctors
and Respiratory Therapists (RTs) started extubation readiness testing
on Maggie. She failed the testing, but they decided to extubate
anyway. I had to leave the room, I was so scared. My husband
stayed. He said that she coughed and immediately her oxygen level
was up and she was awake and was the most beautiful thing I had
seen in my lifetime! She was released 1 week later, but again, we
were no closer to a diagnosis.
March 2010 - 5 Months Old
In early March, Maggie
contracted rhinovirus (a cold to you & me) and was again,
hospitalized on the pulmonary care floor for 1 week. At this point,
I was done. I started doing research. Where is the BEST hospital
for our child? The answer; clearly was Children’s Hospital of
Philadelphia (CHOP). On CHOP’s website, they list their doctors
and their areas of specialty. I found one, Dr. Howard Panitch, who
specialized in Infant Breathing Disorders. That was the one I was
going to try & contact, so I wrote him a letter. He called me
about 4 days later and told me that he had set aside a full-day for
Maggie on Wednesday March 31,
2010.
My husband and I set out
for Philadelphia on Tuesday March 30for the night. Our first
appointment was at 9am for an infant breathing test where Maggie
would be sedated and studied. Following that was a CT scan with
contrast, cardiology work-up, and so on. By 1pm, all of the testing
was complete. By 3pm, we had a DIAGNOSIS and a PLAN!!!! She did, in
fact, have Congenital Lobar Emphysema, affecting the right middle &
upper left lobes. We would meet with the Cardio-thoracic plastic
surgeon in the morning and discuss our options.
The next morning with the
pulmonologist and the surgeon, we decided that we would wait for
surgery, unless Maggie was to get sick again, in which case we would schedule
the surgery as soon as she was well-enough to do so.
A few days later, Dr.
Panitch called and said that the emphysema was
evident in the very first CT scans that Maggie had, 1 week after her birth. That comparison
with the more recent CT scan showed that the emphysema was mainly in
the right middle lobe, so that was what we would target should she
need surgery.
In April, Maggie was
diagnosed with Parainfluenza and was intubated again for 6 days.
She was
released 1 week later from CNMC. During this stay, we discussed the
situation with Dr. Panitch and surgery was scheduled for June 23,
2010 in Philadelphia. The right middle section of Maggie’s lung
would be removed and her recovery was expected to be similar to her
stays at CNMC: ventilator for about a week & then rest for a week
before going home.
June 2010 - Lobectomy at Last!
My mom and I arrived in
Philadelphia on Monday June 21 for Maggie’s pre-surgery testing. My husband arrived on Tuesday
June 22 for
pre-surgery doctor’s visits. We awoke (after a restless night) and
headed to the hospital for the surgeon’s second surgery of the day at 10am.
Pre-op took forever! Maggie didn’t
get back to the OR area until about 12:30pm. We were then told that
the surgery would take about 4 hours. At 1:30pm, the nurse came out
and told us that they just took her into the OR at 1:15pm. So, we
grabbed lunch and came back, waiting as patiently as we could for
news.
At 2:30 pm, I headed towards the restroom, but saw Maggie’s
surgeon heading towards me. I was a little freaked out. She said to
come back with her to the waiting room. I followed & she
proceeded to tell us (me, my husband and both sets of grandparents)
that Maggie was doing great, surgery was complete. They extubated her
immediately and she was breathing fine on her own and her pulse-ox
was between 97-100%. We would be able to meet her in the NICU where
she would stay for the rest of her stay in about 1 hour. The relief
was pouring out of me! I was overjoyed!
Five days later, I took
Maggie home and today, she is 2 1/3 years old & amazing. Except
for a small incision scar under her right arm, she is no worse for
wear.
Today, at 28 Months Old
Maggie was able to
discontinue all of her reflux medications in July 2010. Her
nebulizer medications were stopped in November 2011. She runs,
jumps, swims, and tries to catch up with her big brothers who just
adore her. We are blessed every day to have met all of the people we
did, that we learned what we learned about “infant breathing disorders,”
and how you need to be your child’s advocate and not accept
anything but the best care, and most importantly, how our daughter
beat the odds!
Maggie at 2, precious and perfect.
