Patrick
Patrick has been doing well. He has been on and off oxygen for a week now still. They decided after a few shenanigans last week to just leave it on him. They figure if it is helping his PDA, why keep taking it off? Just let it help his heart while he is there, and hopefully it can keep him settled. Over the last two weeks, his hernia has become worse. When he cries, it looks like a hard grape is trying to escape from his body. We asked if they could fix it while he was there, and they said they would look into it. They said that insurance would cover it because he has actually had problems now because of it, with the UTI. The only thing that is stopping the surgeon from doing it, is his heart. They said as long as the cardiologist gives the okay, and the anesthesiologist agrees, they will do it. He has to be intubated again, and placed under anesthesia for it, which makes me super nervous. His cardio doctor had a look last week and said that she was okay with it. I was okay with that answer. Then the anesthesia doctor called, and scared the life out me. He said that there are risks, being that he had a brain bleed, heart murmur, and what not. As long as I am okay with the risks involved, he will do it. That would have been fine, had he not said "as long as you are okay with it" like 5 times. That put me back to "maybe this is a bad idea." paranoia. Craig went into the NICU that night and got the word from the NICU doctor, who's reply to the story was "He's not performing brain surgery, It's a hernia repair!" I was back to feeling okay again, just slightly nervous. That was like ,Wednesday went this went down. We still don't have a date on the surgery, but were told it would probably be tomorrow or Wednesday. I will definitely let you know the word. On Friday night, they decided to take him off of oxygen, which I don't understand. I don't want him on it, and I really don't want him on it when he comes home, but I thought it was helping him. We were both confused. I guess because he was sating in the 90's the whole time, he didn't need it. When I asked if he was going home on it, they said maybe, maybe not. I guess it will depend on how he does after surgery. It is a 4 day recovery for it, but well see how long Patrick wants to be there. Side note: you have been there to long when you see autumn leaves hanging from the ceiling, and when you arrived there were red, white, and blue decorations. I told him that we will not see Santa or elves, and I made sure I used my mommy voice, so he knew I was serious. Then I felt bad because I thought, oh no, does he think there is no Santa? So I quickly specified that we will see him at home. Let's see what else...I think that is it. He was there for the NICU reunion on Saturday. We didn't make it because I had to work. Let's face it though, him coming back was our reunion. He is making lots of new friends in there, and even has a girlfriend. He had movie night with his pod buddy last week. They watched Toy Story. This is why he doesn't want to come home. He is up to 7 pounds 9 ounces. He is eating anywhere from 90 to 120 mls of food. I think he ate 140 the other night. The bigger he gets, the better his chances of his PDA closing, so bring it on!
Brady
Brady was a busy little beaver this week. We had 5 appointments with him. I'll go day by day.
Monday we had his rehab appointment. He has improved a lot. By a lot, I mean he actually was responsive this time, where as last time he laid there like a log, haha. He was able to lift his head, and hold his head up tight they lifted him by his arms. He was able to stand up for a second or two with assistance. He is getting better at following noises. He said he was pleased with what he was seeing, and that he would see him back in a month. He gave us exercises to do at home to help him out.
Tuesday- Day off, hahah yea right..
Wednesday- We went to his eye doctor at 830 am. Yea, I love that time of day. Now, the last two weeks that he has looked at his eyes, he has muttered the word, "interesting" during his exam. The first time he said it, he followed it with, "That's not something you want me to say." Great. Today, hee started off the exam by saying, "I want to take a look at my work here, I signed my initials in his eye, and wrote I was here." Hahaha. Okay, remember when I first starting writing about this guy, and I really disliked him for making me cry? I'm over that. He turned out to be a very nice guy, and he really is great at his job. I also found out that he was going through some hard times around the time that we started seeing him. I have forgiven, and in the words of Spiderman "Everybody gets one." If you watch Family Guy, you know what that means. Anyway, he started his exam. This time, we were excited. He opened his eyes with the horror speculum, and said "Hell yea." Okay, I like this already. He said his eyes look great. Yes, finally some relief! He said the left eye, which had the Avastin, looked really good and was stable. The right eye, which was laser ed, looked really good also. he said that he shot the laser in front of, and in back of the problem, so that the problem would stop growing completely. I like that even better. We are back to every two week visits, and hopefully it will stay the way it is. We found out that he will see the boys until they are 18. I guess once they have R.O.P. the pediatric eye doctors don't want anything to do with them, so they stay with the specialist. Good to know.
We also had Early Steps that afternoon. Early steps is a program for babies that are premature and may need extra help catching up in terms of learning, and function. They are seen from birth to 3 years. After three years, they go to their programs through the schools, so they work with you for awhile. I was interested to see what they had to say, and to learn how to help him out. This building was the most fun place that I have ever seen. There wasn't a spot that wasn't painted in some crazy color or design. It looked like a good time. We waited in the lobby for babies, and filled out our paperwork. The nurse brought us into a room, and said the doctor will be right in. I hear a voice of a man, and I look up. It's one of his doctor's from the NICU! Yea! Why was this exciting? Do you know what it's like to go over a 3 month history with a doctor you don't know? Good lord, it's annoying. He apparently felt the same way, because he greeted us with a big smile, then said, I don't even have to read your history, I know you well! See, It's annoying to everyone. Three nurses came in and spoke to us about early development. One nurse did an exam, and watched him eat, did tummy time, and helped him walk towards his bottle. Another nurse rang a bell next to his ears, and had him hold toys. The last nurse just talked to us about all of the things that we would be doing, and the services that they provide. Of course they said that he was behind on a lot of things, but behind as a 4 month old, but okay for a 1 month old. I think a lot of people forget, that he is only month old. They have what is called an "adjusted age" and a a "chronological age". His chronological age is 4 months, or almost 5 months because he was born in June. His adjusted age is the actual age that he would be if he was born on his due date, which is over one month. A lot of people give us things, and or ask us questions about the boys and what they are doing at this time. Well, they don't really do a lot, because they, in all reality, are newborn babies right now. They can't use things made for 4 month old babies, because in reality, they aren't 4 months. It is hard to get used to, I know. The fact that they are premature, actually makes them a little bit more behind then a regular baby. So, if we both have babies that are the same age, let's say 2 months old, mine would really be like 1 month, or a month and a half because they were preemies. Hopefully that explains everything a little bit better. I get frustrated when people tell me where they should be at this time, and I have to explain to them that they are not thinking prematurely. Moving on. They said his eating is great. He didn't spill a drop. Well, this I knew, haha. He was able to hear the bell on both sides. He has a audio test in April to recheck his hearing. He was a little behind on him being able to hold his neck up for awhile on his tummy. He was able to hold a toy in one hand for over a minute. Umm, what else, I can't remember. They said based on his results, they recommend rehab 1once a week. We told them that we already do rehab, and they were happy about that. The Early Steps coordinator actually called today, and she didn't know about the rehab, so I told her we were going once a month. She said they were going to recommend once a week. She is going to call our rehab guy. He was happy with once a month, so I will let them work out that detail on their own.
Thursday- We met with a Pediatric Surgeon on Thursday to discuss circumcision for Brady. It is a doctor that sees the NICU babies, so we have met him before. He said he could do it without anethesia as long as he is under 11 pounds. I guess they are to strong after that, and they don't sit still. The earliest he has is the beginning of December. He is growing pretty fast, we are cutting it close Doc! I just got a phone call saying that he is doing Patrick's too. Whoo hoo. He already knows Patrick, because he did his follow up when he had his stomach repaired.
Friday- We saw his pediatrician on Friday, for a general recheck, and to recheck his Thrush issue. he said he looks good overall. He can't believe how big he is getting! He was sad to hear that Patrick was back in the NICU. Looking forward to seeing him again soon. He said 10 more days of antibiotic for his Thrush.
Is that it? Yes, I think so. Also, Brady got to spend time out of the NICU with his primary nurse. She actually babysat him last week so we could go see Patrick together one night, because we had a lot of questions for the doctor. Then we went and had breakfast with her the next day. Best nurses ever! I love them!
Okay, I think that is it! I know, it's a lot. I will let you know how the surgery goes this week!
Love to all!
Em, Craig, and the boys!
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