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This page is designed to be the brief version of Ethan's arrival to our family. The other pages give much more
detailed information on Ethan's diagnsosis' and current treatments. Please enjoy and be sure to leave us a comment and
let us know you were here!
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| Ethan one hour old |
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| Ethan in all his glory! |
Already being the parents of two children-we really weren't concerned about having a third! However, Ethan had
different plans for us-and made sure having HIM as a third child was gonna be very different from the start!
Brian and I got to North Kansas City Hospital very early on Tuesday morning March 30, 2004. Ethan was scheduled
to be Dr. Morgan's first c-section that day with a 7am start time. By 10am that morning our lives were changed forever!
In the operating room, as Dr. Morgan was getting him out, he began asking me questions about what we anticipated his
weight to be (they assured me he was going to be our biggest baby yet!) Did he have a three vessel cord(we
thought so according to MANY ultrasounds) Did the ultrasounds show anything unusual?(umm, no-now you're freaking me
out Dr. Morgan-what's going on????)
Out he came, and a nurse whisked him over to the warming table and all I heard was
"...grey...", "...dusky...", "he's only satting 68...",
"Dr. Morgan, he has a murmur..."
and then the nurse picking up the phone and calling the nursery "Get a hood ready, I'm bringing baby boy Rawley in NOW!"
this whole time I'm lying flat on my back staring up in the face of my anesthesiologist (whom I used to work with at
Truman years prior), straining to see Dr. Morgan's facial expressions and knowing that none of this is 'normal' and none of
it sounded good! No one would make eye contact with me though and before I knew it the nurse I had heard talking
had Ethan at my face and said "Give Mommy a kiss" and off he was in her arms with Brian in tow.
The next few hours I don't really remember as being hours. It all happened so quickly-yet took forever. I
was back in my room, My Mom had arrived with Hailey, Dr. Morgan had been in and out of my room keeping me updated on Ethan's
vitals-he was stable, had a very loud murmur, they were starting IV's on him, his O2 sats were still low 70's but they didn't
want to intubate him just yet-he was 'perking up' under an oxygen hood. The one thing they did know was that Ethan had
some type of Congenital Heart Defect.....
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| Ethan on his way to Mercy-2 hours old |
Then our pediatrician Dr. Grimes arrived. He was already enroute to NKCH when they called him emergently about
Ethan's status. By the time he walked into my room, he had already called Children's Mercy-and they had no room in the
NICU to transfer Ethan there! He came in to tell me they were going to try to get him to St. Luke's or Research in the
meantime until a bed at Mercy opened up for him. I was devastated, scared, and literally sick to my stomach.
He had to go to Mercy-I work there-I know that place-they have the BEST Cardiothoracic surgeons-he HAS to go there-was what
I pleaded with God in my head. My prayers were answered, Dr. Kilbride called back within minutes, Mercy's transport
team was already on the way to the hospital to pick Ethan up and deliver the much needed drug Prostaglandin which
NKCH did not have. This drug acts as a vasodilator to keep Ethan's PDA open until he was more stable.
The transport team arrived and started Ethan's prostins right there-they couldn't afford to wait until he got downtown,
in case the defect was severe enough, they needed to ensure he had adequate oxygen getting to his lungs and out to his body.
Then they packed him all up in an isolette and brought him into my room for me to see him and say goodbye. The team
transporting him was incredible! They explained what they had already done to him, what would be happening next and
when would be a good time for Brian to come down to the NICU. They told us to be sure and not follow the ambulance,
he was stable enough they didn't need to run 'hot' and once in the NICU there were at least 3 hours of testing and stablilization
to be done before he could be seen. As much as that comforted us, all Brian really wanted to do was not let him out
of his sight, let alone wait 3 more hours to see him!
The phone calls began-family, friends, my co-workers from Mercy, Brian's co-workers from the police dept. If you
did try to call my room that day I'm sure you got a busy signal most times!
The NP from the surgery team called me to give me an update on what they knew so far. She had already talked to
Brian, and shared it with him in person-and he asked her to call me.
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| Ethan one day old-holding Daddy's finger |
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| All snuggled in tight-a few days old |
They knew that Ethan had a CHD called Tetralogy of Fallot, a very common CHD, and Cardiology would be discussing course
of action in regards to that later that day.
They did know that Ethan's brain, spinal cord, and kidneys all looked great by ultrasound.
They did know that Ethan had bilateral pneumothoracies they were not putting a chest tube in-just watching and waiting
because he was remaining stable on oxygen.
They did know that he had a two-vessel cord because they couldn't get a UVC line in due to lack of a third
vessel.
They did know that Ethan had 'dysmorphic features' i.e. wide spaced eyes, low-set ears, club-like right foot, curly
toes, etc. and felt he had some type of chromosomal anomaly-and would get a genetics consult as soon as possible.
WOW! That is a lot of information in one phone call! I listened to Delores and was dumbfounded by the end of our
conversation. She assured me I would have more questions later, and to write them down so I wouldn't forget. She
also told me that Ethan was stable enough from a cardiac standpoint that the CV team did not feel they would need to do anything
surgically to him before I would be discharged and be able to get down to Mercy to see him. That was really all I wanted
to hear!
Ethan ended up spending 30 days in the NICU in bed A-8. It was our 'home away from home' for that month, and a
challenging one for us all. He had a cardiac cath at one week of age to help open his pulmonary valve-which it did!
He had numerous tests, blood draws and procedures-more than I had ever been through in my whole life-and he was a month
old! He was a fighter, a champion like no other and charmed all the nurses who cared for him! They loved his curly,
strawberry blond hair, and kept it combed all nice and pretty every day. He eventually became a 'feeder and a grower'
and they loved taking turns holding him when we weren't there. We became very close to one of his NICU nurses, Kristy,
and keep in touch with her still today!
So began our journey into a medical world that I had always been on the giving side of-never the receiving side.....
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| CPAP-one week old-after Ethan's Cardiac Cath |
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