The first two weeks......and then the next 10 weeks.

Myla was born a healthy and vibrant 7 lbs 2 oz on May 19, 2011 at Capital Health System Hospital Mercer Campus in Trenton, NJ. Outside of the amazing strength of my wife during the labor and delivery and instant head-over-heals love that I felt when I first met my Myla June, I was truly amazed by the skill, sensitivity, and warmth exuded by the nursing staff. This is a theme that I will most likely speak of frequently. Myla was born seemingly healthy with a mild case of jaundice due to a high levels of bilirubin (as I joked at the time, Billy Ruben sounds like someone I probably went to Hebrew School with). We stayed in the hospital for 2.5 days, and I was amazed that after 2.5 days of constantly being checked, probed, monitored, seemingly on the hour, the staff at the hospital was confident that we could take care of a newborn sans medical expertise.

On Myla's fourth day of life, we ventured to East Windsor Pediatric Group for her first appointment. We were taken aback when Dr. Grubin first informed us that he heard a murmur in Myla's heart. He told us that it was a loud murmur and that the louder the murmur, the smaller the hole in the heart typically was. He found us a referral for a local pediatric cardiologist who would do further testing to determine the nature of the murmur. We were able to get in to see Dr. Sadaf Khan at Heart to Heart Pediatric Cardiology in Monroe, NJ that Friday. Lindsey and I were very nervous and were disheartened when we arrived to hear that the main diagnostic test, an echocardiogram, could not be performed because Myla was not yet on our insurance. This test required pre-authorization and pre-authorization could not be obtained because blah blah blah, there are many other great blogs out there that dissect the ineptitude of the health insurance system in America, so I will refer you to them (specifically read the archives of Ezra Klein's blog at the washingtonpost.com). Anyway, Dr. Khan attempted to reassure us she would do what she could during this appointment, and once Myla was added to our insurance, she would conduct the echo. We were able to schedule the echocardiogram for the following Friday.

The echocardiogram was a surreal experience. The lights were low, Myla was completely asleep as we peered into to the four chambers of her heart. Dr. Khan took measurements and Lindsey and I stared with amazement as she instructed her assistant to jot down the data. I remember her words, her sound, and her look as she told us there were "some things there...nothing major...but some things." She later went on to draw us a rudimentary diagram of the heart and pointed out to us exactly where Myla's heart defects were. We were told that Myla had two moderate sized holes in her heart; a Atrial Septal Defect and a Ventricular Septal Defect. And so my pathological obsession with googling medical terms that still lingers to this day. Dr. Khan sounded optimistic that as long as Myla was not symptomatic, there was no need to treat either hole at that point in time. There was a good chance that the holes would close on their own. She did do the responsible thing by telling us that if the holes did not close on their own, the Atrial Septal Defect (ASD) could be closed using a minimally invasive cardiac catheterization; however the Ventricular Septal Defect (VSD) would require open heart surgery. When the good Dr. described the symptoms, she used the term "heart failure." scary. The tell-all symptom in infancy is weight gain...no matter what, as long as she was gaining weight, all was good in the world. Other symptoms were sweating while nursing, fatiguing while nursing, respiratory issues, etc...google it and you will see. She did also state that for babies that are not going adequately, they would require an NG tube to assist with the feedings. The idea of tube feeding our baby did not sit well with us then, and it does not sit will with us today; however, there is something to be said for going to our doctors' appointments and seeing a higher number on the scale week after week.

I am going to cut and paste a basic outline of the Bean's medical history that I prepared for our first appointment with Dr. Maqbool, the Gastroenterologist at CHOP:

1. Heart Murmur detected at first ped visit.
2. Referred to Cardio - echocardiogram found 1 Med ASD and 1 MED VSD
3. Cough began 2-3 week of life, began mild.
4. Pediatrician believed it was congestion. Attempted saline and aspiration.
5. Breastfeeding until week 4 averaging 10 minute feedings and would either sleep or pull away and cry.
6. mild weight loss between week 3 and 4 (went from 8lb 4 oz to 7lb 15 oz, however different scale, and she was weighed with clothes on.)
7. Pediatrician mentioned supplementing with formula which we did not want to do, came back for weight check at week 5 and she weighed 8lb 3 oz.
8. Went back to pediatrician week 6 b/c cough had gotten worse (we mentioned the cough each time). At this visit, she sent us for a chest x-ray which showed slightly wet lungs (symptom of heart failure). We then went to the cardiologist following wet lungs to discuss options. she had only gained 100 grams on the cardiologist's scale in 30 days. Cardiologist told us to stop breastfeeding, keep feeding diary and come back next week for weigh in. Prescribed .3ml Lasix in am, and .4ml Zantac every 8 hrs. Around this time, Myla began vomiting once per day.
9. During week 7, she average b/t 19-22 ounces of EBM (expressed breast milk) per day gained 80 grams in following 5.5 days.
10. Cardiologist recommending fortifying EBM with formula. Did this for 2 full days, first day took 18 oz, next day only 13 oz. Called cardiologist on Sunday after Myla had only eaten 7 ounces in 14 hours. She told us to stop the formula, not give the lasix, and take her to ER if she didn't take an ounce in the next hour. She took 2 ounces. She recommended increasing dose of Zantac to .5ml every 6 hours. Keep off the lasix. Currently taking 16.5 oz of EBM per day in the last two days. At this appointment she weighed 8lbs 5.5 oz.

**grunts, hiccups 4-5 times per day, vomitting 1-2 times per day. Not always following a feeding, but usually following coughing/hiccups or sudden change in body position. Consistently has 6 or more wet diapers per day, and 3 or more dirty diapers per day.
**Cough is usually dry; however, after crying, eating, or hiccuping, it has mucus. We aspirate and nothing comes out.
**Not a consistent burper, keep upright after feeding for 30 minutes, positioned her bed. Feeds much better in the middle of the night when she is asleep and swaddled. Try to feed her 1-2 ounces every 1-2 hrs. 2-3 ounces every 3 hours over night.
**She stops feedings either by crying or falling asleep.
** Arches her back and cries when she coughs, sounds like she is trying to swallow something down.

At this point, we figured that Myla had acid reflux (hence the Zantac); however, the diagnosis was not official until this appointment at CHOP. Dr. Maqbool prescribed Myla Prilosec and suggested we schedule an "Upper GI" to help understand of there were any anatomical abnormalities that may be causing her weight gain problems. We also scheduled an appointment with a doctor at the CHOP specialty care office in Princeton. That was not a fun appointment. That doctor told us that we had 2-4 weeks to make a decision about open heart surgery for Myla. The Upper GI took place the following Wednesday at CHOP. We were worried that Myla would not take the barium bottle. Myla did not take the barium bottle, so the radiologist technician proceeded to squeeze it down her throat. Coughing, gagging, choking, crying...repeat..Myla had the white barium all over her body. It was not fun to watch. The good news is that there were no abnormalities showing and it even showed no evidence of reflux (we later found out that this is a really crappy test for reflux). Myla took very little from the bottle over the next two days, which led us back to CHOP on Friday morning. This time it was to the emergency room.