"Quick" Recap

I know that a lot of people have been following our Malachi journey since the very beginning, but for those who are new to the scene and don't want to read through EVERYTHING I've posted in the last FOUR MONTHS, here's a quick recap...

2/25/09--(my 23rd b-day)
*Found out we were expecting!

2/25/09 thru 10/27/09
*Completely normal, healthy pregnancy.

10/27/09
*Malachi arrived.
*No cry. Quickly realized something was wrong. Problems breathing. Rushed out of room to local hospital NICU within first five minutes.
*Thought to be respiratory issues, immediately intubated.

10/28/09--docs still trying to figure out what's wrong.
*God gives doc wisdom to check the heart.
*Echo revealed ASD(hole between upper heart chambers) and large VSD (hole between lower heart chambers).
*Transferred to Riley Children's Hospital.
*Another echo revealed aortic atresia.
*Another scan revealed tracheoesophageal fistula and esophageal atresia (trachea connected to lower esophagus, upper esophagus not connected)

10/29/09
*While trying to pass an NG tube found choanal atresia.
*Met with geneticist; initial blood tests drawn.
*Eye exam: bilateral optic nerve colobomas. (minimal vision)

10/20/09
*Tracheoesophageal fistula repair.

11/12/09
*Open heart surgery (modified stage I Norwood operation with sano shunt).
*Found to have an absent thymus gland (concerning for immune deficiencies)

12/4/09
*Choanal atresia repair (with nasal stents and horrible suctioning every three hours for the next four weeks).

12/17/09
*CT scan revealed underdeveloped inner ear structure, dysplastic ossicles, and small middle ear cavities, small formed pinnae. (minimal if any hearing)
*CT scan revealed prominence of bi-frontal cerebral spinal fluid spaces likely secondary to cerebral volume loss.

12/21/09
*Brain MRI showed diffuse white matter volume loss, severely thinned corpus callosum, and brain bleeds at the forehead.

First week of January
*Oxygen saturations levels in the 30's and 40's, some drops to the 20's for extended periods of time.
*Seizures due to low oxygen to the brain.
*Doctors suggest switching from aggressive treatment to comfort care measures in order for Malachi to "heal by dying."

1/5/10
*Malachi shows up on cardiovascular surgery schedule for 1/6.

1/6/10
*Heart falls into an SVT rhythm with sustained rate at 260-300 beats per minute; surgery postponed.

1/7/10
*Closed heart surgery: BT shunt to provide more bloodflow to his lungs.

1/18/10
*SVT: unresponsive to vagal manuever, adenosine, procainamide, and shock (cardioversion)

1/22/10
*First round of immunizations given.

2/2/10
*G-tube and trach surgery (blood pressure dropped after G-tube stuff, so had to be postponed)

2/3/10
*Trach surgery.

3/1/10
*Immunology results: Must have at least a partial thymus, as some T-cells are evident.


Outpatient Follow Up Visits:
*Pulmonolgy Vent Clinic
*Cardiology
*Developmental Pediatrics
*Neurology
*General surgery
*Genetics
*Ophthamology--Vision testing
*ENT--Hearing testing (failed initial screening; failed audiology screen)
*Immunology
*First Steps will come to our house for therapies (speech, occupational, physical)

(some more hospitalizations, another diagnosis "complete DiGeorge")

5/25/10
Malachi went home to be with the Lord.