While we were in the hospital with Luca, he wasn't really allowed to eat until many days in. He got maybe 5 mls in a bottle, two to three times a day for the first week and the rest of his nutrients were provided through TPN. We were told that heart babies, in general, have a tough time eating. This is mostly due to their hearts working hard and them not having the energy to eat. This wasn't the case for Luca, due to the way his first surgery went, but we had a tough time with his feeding overall. When we initially brought him home, he was probably eating somewhere between 15 mls - 30 mls of milk (1/2 of an ounce to an ounce) each feeding, which wasn't nearly enough. So we started feeding him more often, we started a feeding schedule of feeding him 8 times a day. We had a strict feeding schedule going, every three hours (when I told people this, they looked at me like I was crazy) to make sure that we were at least attempting to get him to eat and that he had multiple chances to eat every day. I had a google spreadsheet (I didn't know about baby apps) that had all of his times he ate and how much down to the milliliter. We eventually had to increase his feedings to every two hours and forty minutes, then to every two hours and thirty minutes at one point, just so that he had more chances to eat.
As we continued with his feeding, we found he had an allergy to soy, dairy, and egg from encountering blood in his stool, but the hardest part about his feeding started around September/October where he would literally refuse to eat. Every time we would try to feed him, he would cry and scream and it was like wrestling with a screaming monkey every feeding. Those dolls that they sell in the store where you give them the milk and the milk just goes away are all lies! Add on the fact that we were feeding him 9 times a day, so there were 9 wrestling matches a day (maybe actually 7, he would fight us less during his sleep feedings) and add on the fact that he is a heart baby and weight gain was very important for him to get ready for his second surgery and the stress level of the situation was extremely high. I spent countless days/nights, literally googling "why won't my baby eat?" and many variations of the same question, and surprisingly I didn't come across to many people actually writing about their own experiences. The short answer to the question is that he had/has severe reflux. We tried everything, from changing different bottles, different formulas, different positions, trying to distract him (we sometimes had to feed him walking around the house), spreading out feedings (yes, there can be more! at one time we were up to feeding ten times a day), and not much seemed to make a difference. For what we were able to get into him, he would often throw it all back up. You can imagine how stressful it can be to wrestle with him to eat, and finally get him to eat, only for it to all come back out ten minutes later. I had alarms set for all times of the night, because feeding every two hours and thirty minutes means you have to be awake every two hours and thirty minutes just to try to feed your baby, even if he's not awake and even if he won't eat!
Just to give a rundown of everything we tried:
Bottles: We started off with Dr. Brown's bottles from getting those initially at CHLA. Other brands we tried: Avent natural, Joovy boob, Tommee Tippee, Comotomo, Playtex dropins, Mam, Born Free, Lansinoh, and Life factory. We tried multiple variations by switching parts out. We were using a Mam nipple, doctor brown vent, on a born free bottle but eventually, we found what worked best for us was using glass bottles but with a wide Dr. Brown nipple. So we are currently using a Born Free glass bottle with a Dr. Brown vent and nipple.
Formula: We started off with Enfamil's infant formula. Once we found out he was allergic to dairy, we changed to Nutramigen (he was on this in the hospital), when the blood didn't go away we changed to Puramino, the lesser known elemental formula. We also tried Elecare at one point, but Puramino seemed to work best for him.
Thickener: This was the game changer for us. Doctors seem to generally advise against putting cereal in baby bottles, so we never tried it. I had read about other thickeners that had issues in the past and was a little scared. I read on one forum about a thickener called Gel Mix. (www.gelmix.com) We put that in the bottle once, and it was AMAZING the difference we saw in him. Feedings that took an hour previously, he took down in 10 minutes and with no fight! We were a bit amazed at how much time we gained back in our lives when we started using this. His feedings seemed like an endless cycle, because they were so close together (two hours and thirty minutes in between and if it takes an hour to do one feeding, you really get about an hour and thirty minutes) and we (I) felt like we were trapped in our home because we couldn't go anywhere because of his feedings. During this time I was also pumping about 8 times a day, so between feeding and pumping, it seemed like an endless cycle. I remember one time taking him to the mall and the mom staring in the Nordstrom lounge at my baby that was screaming and crying because I was trying to feed him.
Luca is 13 months old now, his reflux has not gone away, BUT it is definitely 75% better than where it was before. I also don't believe that he is the average example of reflux, I think in many cases reflux resolves itself by a year old (I have no facts to prove this though, just based off of what I've read and have been told).
I really don't think anybody actually regularly reads this blog, but I'm posting this in hopes that if someone out there is googling "Why won't my baby eat" for countless days and nights, they will read this and realize that they are not alone.
Also, there are reflux groups on Facebook that I found much later in all this, that have been fairly helpful as well. :)