Link: Birth Story
William
- Heart
- Patent ductus arteriosus (PDA): 2 doses of indomethacin with no closure; successful PDA ligation at 3.5 weeks
- Atrial Septal Defect (ASD) or possible Patent Foramen Ovale (PFO): murmur is no longer heard, this is believed to be resolved
- Lungs
- NICU stay: intubated for his first week of life, then again the week of his PDA ligation with the jet vent, moved to CPAP for several weeks, then nasal cannula. He came off of the cannula for a few days, but could not maintain his sats.
- Apnea: Many severe apnea/brady episodes around 7 weeks (32 gestational), at first attributed to reflux but ultimately resolved when put back on caffeine. Discharged with prescription for caffeine, which he stayed on for 3 months at home.
- Home: Discharged on nasal cannula, 1/10th liter oxygen. Remained on oxygen at home for 3 months, then weaned off.
- Brain
- Intraventricular hemorrhage (IVH) grade 3 on right, grade 2 on left - diagnosed at 2 days, now stable. No shunts or stents needed.
- Periventricular Leukomalacia (PVL) An early CT scan showed a potential area of PVL on the right, which may have resulted in the encephalomalacia seen in the 36 week MRI.
- MRI at 36 weeks shows that the ventricles are now normal size. Small area of encephalomalacia at the top of the right ventricle. The neurologist is not concerned (hallelujah). If any future evidence of the IVH occurs, it could be presented in left side weakness.
- Nutrition
- Feeding tube removed around 9 weeks
- Reflux: Zantax prescribed after discharge
- Vision
- Retinopathy of Prematurity (ROP): Stage 2, progressed to Stage 3 with mild Plus Disease. After discharge, treated as an outpatient with Avastin - miracle drug. ROP is gone!
- Strabismus: Intermittent strabismus - his right eye tends to turn in, and he is very slightly far sighted (+1). We were prescribed glasses at 22 months to help correct the issue. If it doesn't work, we'll move on to patching or eye drops.
- Other
- Numerous blood and platelet transfusions
- Bilateral ingruinal hernia - false alarm. Diagnosed and followed with surgery scheduled, but turned out to be hydroceles
- Heart
- Patent ductus arteriosus (PDA): 2 doses of indomethacin with no closure; successful PDA ligation at 3.5 weeks
- Small Ventricular Septal Defect (VSD) - no murmur heard currently, should be resolved
- Lungs
- NICU: Ventilator - intubated for his 5 days of life, then again the week of his PDA ligation. Weaned off of all oxygen support at almost 7 weeks, with occasional cannula use for the next few weeks
- Home: No oxygen needed
- Brain
- Intraventrical hemorrhage (IVH): bilateral grade 2 diagnosed at 2 days, then progressed to bilateral IVH grade 4; no shunts or stents needed
- MRI at 36 weeks shows that the ventricles are still enlarged. Large area of encephalomalacia at the top of the right ventricle. The neurologist is not overly concerned (hallelujah). If any future evidence of the IVH occurs, it could be presented in left side weakness.
- Nutrition
- Feeding tube removed around 9 weeks
- Reflux: Happy spitter, no medicines prescribed
- Vision
- Retinopathy of Prematurity (ROP): Stage 3 with mild plus disease
- Treated with Avastin in the NICU - miracle drug! The ROP is now gone.
- Very nearsighted (around -6.00). Prescribed glasses at 18 months to correct. Vision improved to around -5.25 in one eye and -3.5 in the other at 30 months.
- Other
- Numerous blood and platelet transfusions
- CMV virus - obtained after birth. The doctors believe it may have come from my breastmilk, but the more probable cause is from a platelet transfusion, since William is negative.
- Probable cause of temporary weight gain issues and liver disfunction
- Extra vitamins: aquADEKS, iron, for several months after release from NICU
- Hepatitis - caused by the CMV virus, resolved
- Hydroceles
- Scar under nose from nasal cannula - an indent in septum. This is cosmetic only, but I'm listing it because it will be a permanent effect.
