Monday
Patrick came home Monday night, and all was well. We all had a great night. I did not get any sleep. I was wide awake till about 5am. I think I was just to excited to got to sleep. I just wanted to hold Patrick all night. I think I was just happy to be able to touch him, and it not be for something medical. I just want him to get used to snuggling, and know that being touched isn't a bad thing, and that it won't lead to being stuck with a needle, or having a thermometer shoved into his armpit. He seems to be doing very well with it, and loves to snuggle on your chest. He sleeps really well like that. Brady did well also, but has been a bit fussy. Brady is confused as to what he wants these days. We now refer to him as the beast or the hulk, because when he wakes up, he wants to eat, yesterday. If you see him moving, you better have the bottle ready to go, or you are going to hear about it. It is not pretty. I think he gets that from me. When I get super hungry, I get a little cranky with people. Patrick is on a every 3to 4 hour schedule, and Brady is on a 4-5. This makes for a busy night, since they are always waking up opposite of each other. This is fine if we are both awake, but if one of us is sleeping, it becomes a problem. The other night, I was feeding Patrick, and Brady woke up. The screaming started and Craig was sleeping. I was trying to comfort Brady by talking to him, but he wasn't having any of that. I had to wake Craig up, to feed him. This happened 2 or 3 times. It was not fun. We made it through the night though, and we moved on.
Tuesday
Well, in true Patrick form, he made it about 12 hours before giving us problems. Craig noticed that he was a little warm when he woke up. I told him to take a temp real quick. he did not. Luckily, we were able to reschedule his first pediatrician appointment for that morning, instead of our original one on Friday. We go to our check-up, and they take his temp. 100.7, yikes! The nurse checks it again, this time in the tushy. Yup, still high. We try to figure out what made it happen. Was he hot in his outfit, the car, the car seat? Either way, we start to worry, and I think you all know why. He does his exam, and seems to be doing well. At one point, after all of the medical questions are through, our doctor giggles a little. We start laughing and ask what? He doesn't think that he has ever had a kid that he actually had to fill out a issue in each body section on his medical form. We start to laugh. He laughs again, but then says, all laughing aside, you have two miracles here, they are doing very well. We agree. Before we go, he takes another temp. Still high. He says that as long as he is acting okay, he isn't that worried and to watch it. If it gets to 101, then call him. He says go home, just watch him, but don't be crazy temp takers tonight, just watch his behavior. Yeah right, hahaha. Of course we are up all night again, and we took a few temps here and there. We found that if he is in clothes, he is in the 100's. If he is naked with a diaper, he is in the 98/99 region, but his feet and hands are freezing. We put socks and mittens on, and a light blanket. Super thin blanket leads to 100. Are you kidding me? No blanket leads to shivers. Oh Patrick, you silly kid you. We find a happy medium., socks, mittens, light blanket on legs only. This is dumb. Thankfully, our doctor told us to keep our appointment that we originally had on Friday, just in case. This went on all night. Brady did the same thing as the night before.
Wednesday
We went to see the eye doctor on Wednesday. This is becoming more of an issue, because Brady is very strong. I have to hold his arms while the nurse holds his head, and it's getting tougher each week. He said the treated eye, the left eye, looks very good. The right eye, which is untreated has a little more grade three Retinopathy in it. It's a little worse than last week. He said that is not bad enough to treat it yet, but it may need it soon. We asked him if he would do the injection again, and he said no. Oh no! He said that he would do the laser this time. He told us that after your due date pretty much, they have found that the injection doesn't have great results. We said has he ever tried the injection, and then gone to the laser afterwards. He said that he wouldn't recommend it, because you are risking two infections potentially instead of one. The laser does have more risks, because you are killing the actual veins, where as the shot was fixing them. One of the big concerns is he could lose his peripheral vision in those spots, and need glasses, or worse, lose all side vision, and not be able to drive. He did say however that he has seen kids have stage three and it not cause any problems, and they don't have to be treated, they just might need glasses. If he does need the laser, he has to go back to the NICU, and be intubated again. We just can't get rid of that place! I am happy though that we can bring him and Patrick in on the same day. The doctors have been really great with letting them share appointments. By the way, Patrick's temp has been good today, as long as he is not in blankets or full onseies. Still annoying.
Today
Today was Brady's first cardiology appointment. Where was it at? Our home away from home, the good old hospital. Luckily, we were able to get Patrick in too, which was good, because surprise, his results were a little worse than Brady's, but not bad. Brady's PDA (murmur) is very small. She said that he has a good functioning heart, and it looks like the PDA is resolving. As he gets bigger, it should continue to close. This is good news because awhile back, we thought he would need surgery for it. Patrick's PDA was still open, and it wasn't worse than before, but wasn't better either I guess. She said that she is not going to do anything for it at this time. She thinks that there were two reasons that it could still be open. One is some kind of pulmonary pressure, which I can't describe to you. The other is prematurity of the lungs, which we know he has, and has struggled with for awhile. This is why he was on the O2 for so long. She seems to think that the prematurity is the problem. She is going to check him in a month, but not Brady. She said that she would like to just monitor Brady's weight. She thinks that once Patrick starts to gain weight, and his lungs get better, than the PDA will shrink. She is going to give him a month. If there is no difference, than he might need surgery. If there is, than she will just monitor. The surgery consists of them putting a catheter in and closing it that way, I think. She said that they don't cut through the back because he is older now, and there can be damage to the nerves that way. She doesn't perform the surgery, another cardiologist does it at one of the big children's hospitals. I am not ready for that yet. Like always, it is what it is. We will deal. Secretly, I am freaking the eff out a little. Let's hope he grows this month, and that she sees a difference next month. If not, the blog might be emotional again!
Alright kids. I hope this was a good update!! I will have more soon, I'm sure! I miss you all!
Good night!
The Connors
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