I don't want this blog to be entirely about my miraculous daughter (although believe me, she gives me enough material to do so!) However, I would be remiss if I didn't list her medical issues. I don't know who might be reading this, and for those of you who don't know me personally, you might want to know what we, and our daughter, A, have been dealing with for the last 3 1/2 years.
Keep in mind that I had a healthy pregnancy; nothing showed up on the ultrasound I had; and that I had a planned c-section at 38 weeks. I went in expecting a healthy baby girl, and was in for the shock of my life. She was born in June, 2006. She was in the NICU for almost 12 weeks, then home finally for 7 weeks, then back in the hospital for another 4 weeks while she got her tracheostomy. Amazingly, we have been out of the hospital (in-patient wise) ever since, except for a one day stay when we got her lip repaired.
A's list of medical issues:
1) bilateral cleft lip (repaired February 2007)
2) patent ductus arterious (heart defect) (repaired July 2006)
3) vascular ring (vessel wrapped around her esophagus and trachea) (repaired July 2006)
4) bilateral frontal lobe infarcts (she had a prenatal stroke; amazingly, there seems to be no visible effects from it!!!)
5) bilateral coloboma (gaps in her eyes, on her optic nerve; severely limits vision in her left eye and seems mild vision limits in her right eye)
6) bilateral hearing loss (profoundly deaf in her left ear, mild-to- moderately deaf in her right ear) (aided to normal hearing in her right ear with hearing aids)
7) cochleas in both ears missing a spiral
8) missing all semi-circular canals in both ears (you are supposed to have 3 in each, a total of 6; this affects balance)
9) just a thread of an auditory nerve in her left ear
10) right aortic arch (yes, her aorta arches to the right, not the left!)
11) paralyzed vocal chord
12) tracheomalacia (seems to have resolved)
13) very narrow airway
14) paraesophageal hernia
15) feeding issues at birth leading to placement of a g-tube (feeding tube) in August 2006 (removed July 2010)
16) breathing issues, including a stridor, since birth leading to the placement of a tracheostomy (breathing tube) in November 2006 (tracheostomy removed July 2010)
17) cleft in her upper right gum
18) extra upper tooth (!)
19) low muscle tone
20) acid reflux, leading to a fundoplication (surgery done July 2006 and re-done November 2006)
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