4th Edition - EMMA HOPE NEWSLETTER
We arrived at the hospital on time; I believe it was
about 6:00 in the morning on Tuesday. The delivery was scheduled for 8:15. It
was still dark, the main entrance was closed, and we had to use the Emergency
Room entrance. Everything was going exactly as planned, until... We were
greeted by a nurse who escorted us to one of the rooms when we entered the Labor
& Delivery department. Her first words were: "Didn't your doctor call you? The
amnio showed that your baby's lungs aren't mature - I don't think we're doing
the c-section today." Amy went into what I will call – quiet hysterics. I
politely told the nurse that our doctor did call us Friday evening to tell us
that everything was O.K. and that she would proceed with the delivery on
Tuesday. We agreed that the nurse should page our doctor, and she promptly left
the room to do so. Our doctor (Luongo) had quickly returned the page while I
was trying to console the soon-to-be mom. The nurse came back a few minutes
later to tell us that we were going to proceed and she was followed by a bevy of
other nurses that started to prepare Amy for the procedure. They hooked her up
to the all-too-familiar monitoring machine so that we could hear Emma's
heartbeat and watch Amy's omnipresent contractions. While we waited, an
anesthesiologist came in, introduced himself, and asked Amy a number of medical
questions. Included were queries about Amy's teeth and jaw. I asked the doctor
why he wanted to know such things, and he said he needed to know in case the
epidural didn't work and Amy needed to be placed under general anesthesia and
possibly intubated. He said: "...don't worry, the epidural works 99.9% of the
time." He left us feeling quite reassured. Dr. Luongo arrived at around 7:45
and immediately came to our room and explained the misunderstanding concerning
the amnio results. It turns out that they do two tests on the amniotic fluid.
One came back with a borderline result, and the second, more important one, said
that Emma's lungs were fine. Amy started feeling a little better. Dr. Luongo
left us a few minutes before 8:00 and said that everything was on schedule. A
few minutes after 8:00, the nurses came in to get Amy and bring her to the
operating room. Strangely enough, they had her walk. I, fully resplendent in
my hospital garb, was to wait in the room until Amy was ready. I politely told
at least three nurses not to forget about me. At approximately 8:15, a nurse
returned to get me and bring me to the operating room. Unfortunately, we were
stopped at the door by the anesthesiologist who stated that they weren't ready
yet. My nurse escort went in and came back out a few minutes later to tell me
that they needed to wait a few more minutes for the epidural to work. I
patiently waited and watched the activity through the small window in the door.
A few minutes later the nurse came back out again to tell me the same thing. I
believe this was repeated at least twice more. After that, the nurse told me
that the epidural wasn't working and that Amy was to be placed under general
anesthesia. She started to direct me away, and I asked if I could stay and
watch through the door. She said no, and I was escorted back to the room. There
I sat for the next 15 minutes, completely unaware of what was happening to my
family. Needless to say, one's brain and its ability to devise different
outcomes can play some pretty mean tricks on a person in such a situation, and
it was a scenario that I don't wish to repeat. After an eternity, a nurse came
in to tell me that my daughter had been born and that I could see her. She
didn't have to say it twice. She led me to a room next to the O.R. that
contained an amazing amount of equipment, a half-dozen nurses - most standing
ready with tubes and devices in their hands, and in the center of it all, my
baby.
I didn't quite know what I expected when I went to see her for the first time, I
just knew that the sight of her far exceeded even my best expectations. Not
only did she appear to be a perfectly normal baby, she was also the most
beautiful baby I had ever seen. All of her parts and features were in
proportion to one another, and her skin was an amazingly smooth and soft shade
of pink. I knew Amy would be happy that she had a full head of dark hair. I
got to see her for only a few moments, and thankfully the nurses let me touch
her. Emma was crying, but it was a very weak cry, like a soft whimper. The
nurses seemed anxious to get to work, and I was ushered out of the room. As I
exited, the nurse that escorted me to see her came running up with my camera
that I had forgotten. I asked if I could take one quick picture before they
took her away, and the nurses agreed. After I took what turned out to be a
better photograph than I hoped for, I went back to the room to tell my parents
and Amy's mom what Emma was like. I didn't know what her weight was, but I
estimated that it was well over 6 pounds. After I spread the news, those of us
with cell phones went out to the waiting room to make some calls, as the doctor
was still stitching Amy back up and it would be a while before we could see her.
After about a half dozen phone calls, a nurse came to me and told me that Emma
was now situated in her new spot in the Neonatal Intensive Care Unit (NICU), and
that we could come see her. My mom, Amy's mom, and I rushed after the nurse.
After properly scrubbing up, we got to enter the NICU. It was a large room with
four or five babies in warmers and isolettes on either side, each with at least
one monitor screen above it. A number of nurses were constantly scurrying
around and alarms were sounding every few minutes, some loud, some quiet. Emma
was on a warming table immediately on the right after one entered the room. She
wore a diaper, she had electrodes and sensors on her torso, a blood oxygen
sensor on her foot, and an IV in her wrist that was splinted to keep her from
pulling it out. On her head were two small styrofoam cylindrical pads that
helped to hold the oxygen line in her nose. Amy later compared the device to
the beer can baseball hats. I stared at her as much as I could, but I couldn't
help watching the monitor above her to make sure she was O.K., as the monitor
tracked her pulse, respiratory rate, and blood oxygen level. It was however,
easy for me to see that underneath all of the technology was a beautiful little
baby girl with perfect skin and big dark blue eyes.
Amy was soon sent back to her room to recover from surgery and we went to see
her, trusting the nurses and the technology to take care of Emma. For a few
hours, Amy was under the spell of some heavy drug doses, and we had fun
listening to her talk about her 25 pound baby. As soon as she was coherent
enough to understand what was going on, the nurses wheeled her bed into the NICU
so that she could see Emma. To our surprise, they even took Emma out of her
warming bed and put her in Amy's arms for a few minutes so that Amy could
finally meet her new daughter up close.
Except for the fact that Emma was off of the oxygen by early afternoon and that
she was moved from a warming bed to an isolette, the rest of the first day was
uneventful. We tried to get a plan and a schedule as to what was going to
happen to Emma from the nurses and the neonatologist, but the best answer we
could get was that they were waiting for word from the neurosurgeon. Amy slowly
recovered from her c-section, and soon I was wheeling her to the NICU in a
wheelchair. Again, the nurses let Amy take Emma off of the warmer and hold
her. By early evening, the neurosurgeon arrived to see Emma. He checked her
out and decided that she would get an MRI on Wednesday and have her surgery on
Thursday morning. We spent Wednesday waiting for Emma to get her MRI. The MRI
schedule was booked, but the Man promised that Emma would be squeezed in when
there was an opening. In the evening, we got word about a half-hour before it
was Emma's turn. Amy was still wheelchair bound, so I accompanied the nurses and
Emma during her transport. I stayed by her side as they moved her from her
isolette to the mobile one. It was a large stretcher with a small incubator, a
large battery pack, oxygen tanks, and all of the same monitors that Emma was
hooked up to while in the NICU. It was about a ten-minute trip to the MRI
department. It was a strange trip for me to say the least, as I was flooded
with all kinds of emotions seeing all of the people we passed in the halls stare
at my little baby in the big machine.
I wasn't able to accompany her into the room with the MRI, but I heard later on
that Emma's time in the machine turned out to be quite eventful. She was given
a sedative (suppository) to keep her calm and still during the testing, but she
apparently wasn't given enough as she awoke partway through the testing and
fought with the technicians. This was one of the first bits of news that
brought a real smile to Amy's face. The testing lasted about an hour. When it
was over, the nurses were eager to spread the good news that there was
"communication" between the ventricles in her brain and her spinal column, and
that the fluid passageways were not completely blocked. There was also no
evidence of any tumors or other problems. They predicted that there was a
possibility that the condition may actually remedy itself in the future, because
it was only a restriction and not a blockage, and her problem was possibly just
the over-production of ventricle fluid. After speaking with the neurologist the
next day, I learned that this was yet another time when the nurses should have
kept their mouths shut. In a nutshell, unless brain surgery takes a quantum
leap in technology and/or technique, the shunt will be with Emma for the rest of
her life. Of course, as far as I'm concerned it's only a matter of time, as
medicine has made many such leaps in my lifetime alone. Anyway, I joined Emma
for her return trip to the NICU, and then Amy and I did our best to prepare
ourselves for Emma's surgery the next morning.
Amy and I both accompanied Emma for her trip to the O.R. staging area. While we
waited for the doctors to arrive, one of our nurses took it upon herself to
prepare us for what was about to happen. I'll try not to complain too much,
because the care they gave our daughter was second to none, but this was another
instance where they should have kept their mouths shut. She told Amy and me
that we could expect Emma to come out of surgery with a bandage covering just
about her entire head, that she would be sedated for days, that she would
probably be on a ventilator, etc. Amy went into her special kind of "quiet
hysterics." Thankfully, we soon met members of the team that would assist in
the operation. Two anesthesiologists were on the team, along with a medical
student. I had met one of the anesthesiologists the day before, as he was kind
enough to approach me and ask if I had any questions about the procedure, and he
introduced me to the student. Unfortunately, Amy's first encounter with the
student was when she saw what appeared to be a 16 year old boy holding a book
entitled "Introduction to Anesthesia" as a member of the operating team. (I'm
not kidding about the book.) The second anesthesiologist asked if we had any
more questions, and we told him what the nurse had just said about Emma being
sedated for a few days after the surgery. He could not hide the shock on his
face when we told him, and he soon corrected the nurse by stating that Emma
would be off of the drugs as soon as the surgery was over, and that the only
things she would take afterwards would be antibiotics and pain medicine. Our
savior Doctor Khan was the last to appear, and he again made sure that we were
comfortable with what was about to happen. I guess we were as comfortable as we
could have been, and we soon watched them wheel our daughter away.
I could type for ten pages in an attempt to describe what it was like during the
next hour and a half, but I'll sum it up instead by stating that it was an
experience that I do not want to repeat. Our friend Laurie (she and her husband
spoke at our wedding) happens to be an administrator in the NICU, and she was
the first to come into our room and tell us that the surgery went well, and that
Emma was on her way back. It was perhaps the best news I've heard so far in my
life, and it was nice to hear it from a friend. A short while later, Doctor
Khan came in to give us the details. He reiterated that it went well, and that
Emma should recover quickly. Emma was to be off of all medications and IV's as
soon as possible (besides the 3-day antibiotics), and he would consider her to
be fully recovered once she could demonstrate that she could eat and process the
food through her GI tract. We thanked him and went to see Emma as soon as we
could. She was back on her warming bed, and we were very happy to see that she
had only a small bandage on her head and another on her belly.
Emma did recover faster than anyone had predicted, and she needed pain
medication for that day and night only. It was hard to see her in pain once the
anesthesia wore off, but it was good to see that it was possible to console
her. To take another shot at the nurses - I got into a bit of a scuffle with
them because one had told me that they didn't want to administer pain medication
because there was a chance that Emma would stop breathing. When Emma was in
visible pain and started crying, I did my best to console her while another
nurse prepared to administer the pain medication. The nurse looked at me as if
I was some kind of monster when I told her that I had successfully quieted her
down and that she would not be receiving any pain medication. A few words were
exchanged, and it took a brief meeting with the neonatologist to convince me
otherwise.
Over the next few days, Amy and I finally got to act like most other new
parents. We got to bottle feed her some of Amy's breast milk and some formula,
and we got to change her diapers. We watched closely as her feedings increased
from just a nipple-full to 10cc's, 15cc's, 25cc's, and finally to well over
30cc's (about an ounce.) Amy eagerly weighed each messy diaper (while I changed
them), just like the NICU nurses did. We even got to give her a bath. Sadly,
the day we had dreaded arrived. Amy was discharged on Saturday, and we had to
go home. Fortunately, we had a good feeling that Emma would be following us
soon after. We left knowing that there was no way (unless something went wrong)
that Emma would be at the hospital for the two or more weeks like most people
had predicted. We had our industrial-grade breast pump that we were renting at
home with us, and after Amy pumped at night, I rushed the small container to the
hospital in an insulated lunch box with ice packs.
On Sunday, we actually spent more time with Emma than we had on any previous
day. She had been eating well, and the nurses finally removed her IV. They let
us take her into the family rooms across the hall from the NICU. This is where
we shot her first videos. Emma got her hearing test while we were there that
evening, and she passed at the last minute while her parents held their
respective breaths. We spoke to the neonatologist, and we knew when we left
that night that there was a good chance we would be taking her home on Monday.
We were told that the decision would be made during rounds on Monday, which took
place in the late morning. Again we left the hospital without her, but we were
much happier than before, because we were sure that it would be the last time.
On Monday, we decided to wait until after rounds to head to the hospital. We
called first, and sure enough, we were told that Emma was ready to go as soon as
we got there. Trying not to forget anything, we anxiously drove to the
hospital. The nurse that was with her that day thankfully got through all of
the discharge stuff quickly. We had watched the stupid educational videos the
day before, so they didn't have to call security to keep me from taking my
daughter home. The longest delay was me, trying to adjust the damn straps on
the car seat. I had assumed that Emma would be using the smallest setting.
Sure enough, she was too big - and it took her dad the engineer 20 minutes to
move the straps up to the next slot.
Now we had this great plan for bringing her home to meet the dog. Throughout
her stay at the hospital, we swiped many of her used receiving blankets and
brought them home for Lars to smell. We were very conscious of all of the
things that can go wrong with a new baby and a dog. An intelligent dog owner
knows that a dog will act the same way as an older sibling if all of the
attention he used to get is now lavished onto the new arrival. As soon as we
brought Emma home, we were going to play with Lars, feed him, let him sleep with
us, and all of the other things that he enjoys. As far as the initial meeting
between him and Emma goes, we wanted to be alone with them, and we wanted to
keep Emma in her car seat and put her on the dining room table so that Lars
could get used to her sounds and smells without getting in her face right away.
Amy's mom knew not to come over for a while, and we sent my mom out shopping.
Everything went exactly as planned - until we actually got home. I went to
unlatch the car seat from the base, but I could only get the back half
unlatched. I tried and tried, but I had no luck. Fifteen minutes later, and
Emma got her first experience with a whole slew of swear words. I couldn't even
remove the base from the car and carry the whole assembly into the house because
I couldn't disconnect the seatbelt with the car seat on the base. I finally
gave up and decided to carry Emma into the house without the car seat. Amy had
the keys, I had the baby. It took Amy a little too long opening the door. She
tried and tried, but had no luck. I took the keys from her, and tried and
tried, but had no luck. I looked closely. It was the wrong key. I had given
my mom my house key. So much for the plan. I climbed up to the second floor
and went in that way. The dog was good with her, and he still is. He was a
little frantic when Emma cried the first few nights, but now he doesn't even
seem to notice the noise. We know that he realizes that she is a person because
when she sits with her arms out where he can reach them, he hits her hands with
his nose, just like he does to the rest of us when he wants to get pet.
Except for the visits with doctors, I imagine that our time with Emma at home so
far has been much like that of any other new family. A visiting nurse came on
Tuesday - Emma weighed 5 lb. 14 oz. During our first pediatrician visit on
Wednesday, Emma weighed 5 lb. 13 oz. Emma got her stitches out at the
neurosurgeon’s office on Thursday. All of them said that she looked fantastic.
The neurosurgeon pointed out that her head now looked normal, and the fontanel
was now sunken in a little, as it was supposed to be (it wasn't before.) We
asked him (Doctor Khan's partner) what the future will hold, and he said that
nothing will happen unless something goes wrong with the shunt. There are no
follow up appointments. Unfortunately for us, the symptoms of a malfunctioning
shunt are much the same as most other common sicknesses - oh well. On Monday,
the visiting nurse came again, and Emma weighed 6 lb. 5 oz. A week later
(9/22), she came again, and Emma weighed 6 lb. 15 oz. Today, Emma weighed just
over 7 lb. at the pediatrician's office. Emma eats every 2 1/2 - 3 1/2 hours.
She can also shoot liquidy poop over a foot, and she does so almost every time I
change her. Once, she created a pee arc that cleared the bureau beside the
changing table. That's rare, however, as she usually just dribbles. She also
does that almost every time I change her.
I hope you've enjoyed reading these letters, I'm not sure if I'll write any more
- at least not for a while. I'd like our time with Emma in the near future to
be exciting for us, but boring for everyone else.
Jonathan