Jacob Matthew McClorey
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Jake is our miracle baby. Finally, after years of trying to conceive, I became pregnant following a second in-vitro cycle. After nearly 24 hours of labor, Jake was born on January 7, 2001 -- almost one month prematurely.
We first became concerned when Jake did not cry out during delivery. The doctor assured us nothing wrong - he was premature and full of amniotic fluid - very common we were told. Jake's breathing sounded very raspy - don't worry we were told - it's the amniotic fluid - it will go away.
The following morning, the pediatrician who came to examine Jake noticed two small dimples on each side of Jake's neck (bilateral brachial clefts). A routine newborn hearing test showed possible signs of hearing loss - no need to worry we were told - they've been experiencing problems with the equipment. The doctor then informed us that he suspected Jake may have something called BOR syndrome [Brachial-Oto-Renal]. After being discharged from the hospital he suggested we see an ENT specialist at the Children's Hospital in Milwaukee. We immediately proceeded to the Children's Hospital.
The ENT did a quick once-over of Jake and suggested we schedule a more thorough hearing test. Fourteen days later, we returned for what we thought was going to be this follow-up visit. We had no idea how our lives were going to be turned upside down. It was during the examination, when Jake began to cry, that he exhibited signs of breathing difficulty. One thing led to another and he was admitted into the hospital, and later that night brought to the PICU. We were definitely in the right place at the right time.
It was determined that Jake's airway was not fully developed -- he has severe tracheomalacia and laryngomalacia and mild-to-moderate bronchomalacia. A supraglottoplasty was performed and Jake had to be mechanically ventilated. Four days later, he was extubated to nasal CPAP. Due to continued desaturations and bradycardias (fast heartbeat) requiring two minutes of chest compressions, Jake had to be nasally intubated. It was inevitable that Jake receive a trach. When Jake was just 33 days old, a tracheostomy tube was placed. We were devastated. However, in time we knew we had made the right decision -- Jake was finally able to breathe comfortably.
In addition, an upper GI showed Jake had silent aspirations and reflux, so a G/J tube was placed (he has since progressed to a G-button). After an 85-day hospitalization, Jake finally returned home on April 17th.
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In the months since we've been home, we have grown accustomed to Jake's medical condition, home nursing (thank goodness), weekly OT, ST, PT and frequent doctor visits. Jake is making good progress and is doing remarkably well. It appears that Jake has only the BO components of BOR syndrome (thankfully his kidneys have not been affected). Jake has severe hearing loss in his left ear and mild-to-moderate loss in his right, so he now wears two hearing aids (which are very challenging to keep in). Although he did not pass his last OPM (swallow study), he showed significant improvement and we're hoping to feed orally in the future - in the meantime, he enjoys "tastes" on his pacifier.
We pray and patiently await the day when Jake will be decannulized.
If anyone would like to contact us, please feel free to do so.
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JAmie (mommy), KEvin (daddy) and JAKE McClorey
kjmcclorey@aol.com
