It's been a while since I have last updated. Adjusting to not only having another child, but a child with some special needs has been quite the experience. Elijah is doing well. Noah loves his little brother although he has struggled with sharing his parents' attention. We decided to keep Noah in school in order to keep his routine and have interaction with other kids. When he gets home we have to wash him down and change his clothing. Elijah isn't allowed to be around kids or people who are ill. Basically we are hermits. He can go outside, but not in enclosed spaces where people can cough or sneeze on him. We have become quite the germ freaks. Hopefully this will be enough to keep the germs from getting to Elijah.
They told us when we were discharged that the toughest part now will be his feeding. How true. When they sent us home, they had us fortify his breastmilk to 27 calories (formula and breastmilk is typically 20 calories). They gave us two cans of this special formula, progestimil, and sent us on our way. They warned us that if he refuses two feeds, throws up twice, or has too many diapers, we have to go to the emergency room. The fear is that he will become dehydrated and that the shunt in his heart will clot. This would be very, very bad. It's also important that he gain enough weight. These heart babies often have a hard time gaining weight. They don't typically eat well and their bodies use more calories because they work harder just to stay alive.
Needless to say, we are a little high strung about his eating. He had been doing really well eating at the hospital, although they weren't really happy with his weight gain. However, once we got home, he started throwing up every day and struggling to eat. My gut told me it was the fortification causing this. However, it could have also been caused just by the fact that he is a heart baby. We just didn't know what to do. He would arch his back and choke on the milk. Feeding him became so stressful. We went to CHLA last week and they weighed him and they weren't particularly pleased with his weight gain and they blamed the feeding issues on reflux and they increased his meds. Again, my gut said this was not the issue, but I'm not a doctor so what do I know.
Finally last week it got bad and overnight (why does it always have to happen at night?) Elijah started to all out refuse to eat. He cried, spit out his milk, and refused his bottle all together. All I could think about was Elijah getting dehydrated and the shunt clotting off. Finally I started to breastfeed him and give him plain breastmilk (the doctors told me I was not allowed to breastfeed because they couldn't monitor the amount he got and because he burned too many calories feeding at the breast). I just didn't know what else to do.
I contacted CHLA the next day and they were able to set us up with a dietician. At this appointment I learned all about the different formulas and they tested my breastmilk. I guess the formula he was on is really broken down and easy to digest but it also tastes awful. Who knew a four week old would have such an opinion. In the end, it was decided that Elijah doesn't need any fortification because he eats so much. I knew it! Not only that, but he had gained even more weight! Victory!
Other than feeding, Elijah has done really well. His echo was good, the x-ray came out clean, and the ekg was normal. They will continue to monitor him over then next couple of months. He will have his next surgery between 4 and 6 months. It will depend on his weight and oxygen levels. It's scary because his oxygen levels will drop. It's only a matter of time and this drop will tell them he needs the next surgery. We measure his levels and weigh him every day. Once he has his next surgery, he will be much more stable.
So until then we will just keep on monitoring him, going to his doctors appointments, and giving him lots of love. I won't lie, it's been a challenge. But this little guy is worth it!
