Hi Joey,
You are killing us, just killing us! As I type this, you are on another 48 hours of no food and you are a fussy pants because you are hungry. But, you sure are cute when you are sleeping :)
After I posted last, we did come up and visit you again on Father's Day. We ended up having quite a heated discussion and it was the first time we have really gone against the medical team. You had blown your IV and they couldn't find a place to put a new one. Daddy walked in and they had 4 nurses holding you down looking for somewhere. That pushed daddy over the edge and he lost it :) Luckily, we won that argument (after they called in a dr to come in from home) and you did not get poked again. We upped your formula and you were IV free. Gramma Debbie stayed the night with you while we spent some time with Elijah.
On Monday, it was status quo - just trying to get you to eat as much as possible. We are trying a new schedule where I hang out with you from 8:30 - 5:30 then I grab Elijah while you hang out with daddy until 7:00 or so. We feel like we get to cuddle with you a lot then hang out with Elijah too.
On Tuesday, I was disappointed when I walked in because you stopped eating again. When daddy came at noon, he said he did not think you were feeling well at all. We finally talked the dr into changing your formula to the allergenic mix - which is what we wanted you put on Saturday. We thought your tummy was upset and that is why you quit eating. He agreed and you perked up by 3. However, daddy changed your diaper and there was blood again. Daddy was mad because he thought they should have listened to us on Saturday. I was not surprised as I was expecting it. But, it is a large set back - another 48 hours of testing and no food. The dr apologized for not listening to us and all of your tests are pointing towards the fact that you have a food allergy. When you get the formula, it irritates your tummy or bowels so they bleed. We just didn't get you switched fast enough to get ahead of it.
Since you needed an IV again, they decided to do a pic catheter instead. This is an IV that goes into your veins a lot further so that you can't blow it or pull it out. It was the best decision but, unfortunately, they had to stick you for 2 hours to get it to work. It was very difficult on us knowing that you were in so much pain. When they were finally done, we cuddled you and all the spirit was gone from you. You just gave up fighting because you were being tortured so much. It killed us buddy. It kills us that you are going through so much pain and there is nothing that we can do about it except love you up afterwards. We really wish there was something we could do to take the pain away from you.
As of now, you will have labs and xrays done again for 24 hours. Then, once you hit 48 hours, they are going to do another test to make sure that all of your insides are formed OK so we can rule that out and be even more sure that it is a food allergy. Once that is clear, we can resume feedings with the special formula and hope that your diapers are free from blood. We are so hopeful that this is going to be the round where you are eating normal, you are not having discomfort and you have no more blood. If that isn't the case, I think you will see us both more devastated than we have ever been.
On a positive note, the dr was completely impressed by your neck control. You raise your head up and look around so intently. He thought that was very mature for your age :)
I was going to leave you with some photos but the internet won't let me so I will have to share next time. We love you buddy!
