Caleb

Caleb was a whopping 10.4 lbs at 38 weeks gestation.  The medical issues started in utero when the first sonogram revealed anomalies with his heart rate.  Caleb had episodes of supraventricular tachycardia in utero.  His heart rate reached up to 250 bpm frequently.  We knew then that Caleb was going to have some medical issues but we were unaware of the complexities yet to come.

FIRST FOUR MONTHS

Caleb's first day

Though Caleb looked healthy based on his weight, our little angel was in the Neonatal Intensive Care Unit (NICU) from birth (January 19, 2009) to May 2009.  He was in two different hospitals and was seen by multiple doctors.  Initially, he didn't have a clear unifying diagnosis.  He exhibited several symptoms, but the underlying cause of his medical issues was unknown.  This proved to be baffling to his medical providers.  He had a multitude of experts following him comprised of a neonatologist, neurologist, geneticist, urologist, cardiologist, pulmonologist, surgeon, and an ENT.

Some of the symptoms/initial diagnosis were:

• Cerebral Cysts-Congenital
• Laryngomalacia
• Airway Obstruction
• Chronic Respiratory Acidosis
• Arrythmia
• Premature Atrial Contractions
• Hypotonia
• Gross Motor Skills Delay
• Feeding Problem

Due to his symptoms sans a unifying diagnosis, several procedures were performed during the first four months in the NICU.

PROCEDURES

Caleb had several surgical and non-surgical procedures the first few months.  They included gastronomy/fundoplication, tracheostomy, muscle biopsy, several scans and genetic tests.

Gastronomy/Fundoplication Month 1

Tracheostomy Month 2 1/2

Overall, the symptoms were attended to as they manifested.  The plan of care simply was reactive since there was a lack of understanding of the cause of the problem.  Hence, preventative measures were ineffective at the time.  

My husband Paul and I stayed with Caleb the whole time he was in the NICU.  I had left work for five months and did not return to work until June 2009.  We had to wait until he was discharged.  When we were cleared to go home, we needed to find a home health agency to provide coverage for Caleb while we worked.
While the hospital stay seemed like infinity, Paul and I were both excited and scared to finally take our Caleb home.  We had machines we had to learn to use, medication we had to dispense on time, trach care we had to do daily,  and a new baby.  Furthermore, we had to adjust to our new life:  living with a special needs infant.

Home at last