I have noticed over the last two weeks that the boys seem to be bahaving the exact sam way. I swear they have some serious ESP. Last week, they were both pooping their pants like crazy. The last two days, it has been fussy bottle eating. They are hungry, but they don't want to eat. They both take a few drinks, then cry. Do they know that they are both fussy? Do they know the other one doesn't feel good? It is amazing how they are really the same in so many ways.
Brady
Brady has had a rough last two days. He is a bit fussy. He usually gets a bottle, then goes to sleep within the hour. Not the last two days. Now he has been eating, and staying awake, anywhere from one to 5 hours after. do I care that he is awake after his bottle. No, because it gives us time to read books, play Patty Cake, and what not. Have we done a lot of that? No, because he spends most of his after bottle time crying. He started crying last night about a half hour after we went to bed. That was about 2am. When I got up at 6am today, Craig was still up with him. He never went to sleep. He said he was up fussing all night. He finally fell asleep at like 615, then we had to leave for the eye doctor. He cried in the waiting room for like 15 minutes. Finally, I rocked him to sleep after that, just in time for him to wake up for the eye exam. The results of the eye exam were okay. He said he is pleased with the left eye, which is the eye that the Avastin was given in. He looked at the right eye first, then left, then back at the right. Uh oh. He said that the right eye, which looked good two weeks ago, now has some stage 3 R.O.P. in one spot. He said that it doesn't need to be treated right now, sometimes it resolves on it's own. He is still hoping the shot will help it. He also said that he has seen a few kids with a small spot of stage 3, and they do just fine, and they don't need treatment. However, because he saw that, we are getting checked now every week for awhile, not every two. Yeesh. After his appointment, we head to the hospital to see Patrick early, since I had to return an item to the maternity ward. Craig goes to take a nap, and I take over Brady. He wakes up from his mini nap at 450. I give him a while bottle. No sleep, I give him 20 more, no sleep. I know, lets cry and stay awake until 930pm. WTF Brady? What is happening? He seemed hot after the eye doctor today, so I took his temp. He didn't have a fever. He isn't gassy, he isn't hungry. He is just awake. He doesn't want to sit down, only wants to be rocked. He starts sucking on everything that he can get near his mouth. I try to feed him again, he eats a bit more, then cries. Sigh, let's try and bouncy chair. No, let's try a swing, no. Lets try a vibrating seat. Wait for it, he falls asleep for 2 minutes. The he starts crying. I pick him up, and he finally falls asleep. I guess he just tired himself out from trying all of the chairs. He is just starting to wiggle at 1230am. Let's see what happens. It's going to be a long night. The worst thing, is that I think I am fighting off something, and started taking medicine just in case, and now I think Craig might be getting it too. I hope Brady isn't getting whatever it is that we might be getting. As I checked his temp today, I realized, that I have no idea what to do if he is sick. Thankfully, we see his pediatrician in two days. Aaaaand he's up. We made it to 115am. Besides that, he is having a great time with grandma. They have been reading books together, and singing songs.
Patrick
Oh Patrick, you are going to be the death of me, I swear. We go to visit Patrick, and he looks great. he is gaining weight, and looks healthy. The doctor says on Sunday, that they are going to fine tune some things, and then come up with a date for him to go home. Awesome. We go in last night, and he still looks good. We are all hanging out, talking, and his monitor goes off. His heart rate drops a little, but he quickly recovers, and everything is fine. I thin I mentioned the last post that he had two bradycardia episodes, but since his heart rate didn't go below 80, it wasn't a real brady. So, he has one, and we move on. We start to feed him. He takes about 30 ml of food. That's okay, he wasn't that hungry we will wait on the rest. All of a sudden his monitor goes off. We are all looking at it, and then I look down to try to talk to him. I notice that he is starting to turn a bluish tint, and his nurse says to me, stimulate him. His heart rate went down to 50. Why does he always do this when I hold him? Really, Patrick. We almost have a go home date, and you're going to turn blue on me? Great. His nurse seems to think that the nipple hole was to big, and that is why it happened. We are cutting a hole in it to let the oatmeal through better. Sometimes it they get it to fast, they can brady. Good to know. After that episode he was okay, and he ended up eating like 30mls more later during the visit. Why is he doing this now? I don't know, but it's frustrating. The doctor then comes over to tell us the MRI results. He said that the MRI confirms what we already know pretty much. It stills shows his PVL, but the good news is that it is not any worse, which is great. He said that there is still one slightly swollen ventricle, but it's not bad. He said we are going to continue to monitor his head circumference, and if it gets bigger we will do something about it. His head has been really good though for about a month, and the measurements have been good. His head also feels nice and firm. and not squishy like before. He said that the brain bleed also looks good, and that there is still some debris that is there, but it is not an active bleed. That is good too. So overall, it was a good report. I'm fine with it, as long as the PVL is not worse. We do have to follow up with a neurologist for him because of the PVL. He was up to 5 pounds 14 ounces HIs tushy looks a ton better! So, the only test left is the car seat test. They are just waiting for his saturation to be better, and for his feeds to be consistent.
I think that was it from the last two days. We are basically just waiting for a release date, and for him to be a tad bit more stable. I hope it's soon!!
Have a great day everyone!
The Connor Family
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