Hi everyone!! Just wanted to let you know that we took a few pics for Christmas yesterday, and I am going to try to get a post in tomorrow! Stay tuned!
Love Em
Tuesday, December 25, 2012
Tuesday, December 11, 2012
Don't fret, we are still here!
Helloooooo out there (there there there)...Is anyone still around? I don't blame you if you left us, I have been a bad bad blogger. Please Wolfie, forgive me!!!! We have been so busy lately! We have been spending our time here not eating, showering, brushing our teeth and what not. (Also visiting Steve Roberts!) Well, being home with one child was okay for us. We were able to take turns sleeping, and had somewhat of a little routine. Two kids being home, hahahha, what routine? What sleep? What is going on here? Oh boy! I always listen to people say,"you know, having twins is the easy way. You get it both done at the same time. If I had a choice I would have done it that way." Okay, for the record, the only people that say that, are people that have not had twins. The people that have twins, know that the anyone who says that, is bat shit crazy and have no idea what they are talking about. If said people had twins, that phrase would have never left their mouth. In the words of my hubby,"Twins are no joke." There is no rotating sleep, or breakfast or showers. It is every man for himself when there is a second of quiet. When these boys are up, our life stops and it is all about feeding, changing, rocking, singing, holding pacifiers in, or doctors, doctors, and more doctors. It is a lot. The most frustrating thing, is that one second you have when you just get one of them to sleep, and you hear another one start to stir up. Ugghh! Thankfully we have not turned on each other yet, which is good. We both have openly admitted to wanting to throw something at the other one while they sleep. Haha, it's true. 90% of the time, while I am feeding one of the babies, trying not to fall asleep, I look over at Craig and he is sound asleep. I look around the room and think about all the things I could throw at him to wake him up. He admitted he does the same thing. On numerous occasions, we have both laughed at each other in the middle of the night, and said, "Haha, that's your baby!" as one of us gets to roll over and go back to sleep. At least we are laughing. Anyway, so much has happened since we last spoke. I guess I will start from the beginning, and add pictures as I go.
Patrick came home the day before Thanksgiving.
That made me very happy. He came home on a nasal cannula. This sucks, but it was easier than we thought it would be. We look like a mobile medical unit while when we go places. They sent him home with an oxygen tank and two monitors. One monitor has his heart rate and his oxygen saturation. We hook it up to his foot, just like the nicu. What's not like the nicu is the that the probes are a piece of shit. Excuse my language. They tend to break if you move apparently. The wires start to come out of the piece that sticks to his foot. The first two days we went through two, and we had to get more when the tech guy came to give us a new unit. That's right, The second day we were home, the unit started flashing error, and I had to call the company at 4 am. I figured I would just leave a message and they would call me back in the morning. No, they answered, and she told me she would call a tech. The tech called me within 15 minutes, and then said, I'm coming to give you a new unit. What! That is awesome service. I was so happy because I was terrified to have him on oxygen, and not know what was happening. He also brought us two new probes. We learn the next day as we call the company to get more probes that insurance only covers two probes, and that if we want more they are 20 bucks...each. Holy expensive Batman! 20 bucks for a piece of wire that breaks when our son moves? Grrrr. Whatever. We rigged it so that it worked and lasted longer. Moving on. They also sent him home with an apnea monitor. It has a strap that goes around his chest, and it alarms when his heart rate or oxygen drops. We didn't use this machine, and here are two reasons why. 1. We didn't want to strap the piece around his chest. Brady was scarred on both side of his chest from the thermometer probe in the nicu. He has two big indents, and we didn't want that to happen to Patrick. 2. When I say that it "alarms," I mean it has a long beep so loud, that dogs in Europe will shit their pants when it goes off. No thank you. Your welcome Eurofurrballs. The next machine that was delivered, that's right delivered, was a three foot machine that turns air into oxygen. That is what we hook his cannula up to. I can only describe this as a small lawnmower inside the house. We laughed the first few days as we would say "What??!" to each other when we sitting two feet away from the other person. Crazy enough, I got so used to the hum that it helped me sleep at night. Haha, go figure. So, we had to carry the tank and the monitor every where we went. It was awesome. That being said, Patrick was on it up until about 4 days ago. Pretty much, overnight, he stopped dsating, and hasn't had to be on the machine. What happened? I have no idea. Craig tested him a few days for about an hour or two, and he never lowered below 90. This is especially weird, because the week before that, we had done a few tests, and he had lowered to high 70's within a 2 or 3 minutes. Let me be clear, by "tests" I mean that the dog would run by and pull the cannula out of the machine, and us not know. The monitor would go off, and we would troubleshoot, and say, oh holy moly, he's not hooked up. Thank the lord that the monitor worked well. Anyway, he has been off the machine for about 4 days now, and seems to be doing well.(Side note: I am super glad about this because watching the nicu nurses tear tape off your kids face is hard, but doing it yourself sucks.) We keep him on the monitor at night because I am to nervous not to, but the nurses said that is okay. Oh yea, Brady and Patrick's primary nurses came over and hung out the other night. They were angels for them..of course.
Here is his setup. The big grey lawnmower, and his little monitor. He doesn't like it.
There is half of a smile.
Nap time in the bassinet.
Holding my monkey pacifier.
Tummy time!
Sleeping so nice...
Naughty little elf on the shelf, put that back on him! (no children were harmed in the taking of this picture, I swear.)
We saw the cardiologist last week. She said that his heart murmur has closed a little bit more, but not enough to get out of surgery. I guess we misunderstood the last time that we were there about the surgery. We thought that he had to bulk up so that he would have a better chance of not having the surgery. That was wrong. He always had to have the surgery, she just wants him to bulk up so that he is ready for it. I guess they can't do it unless he is over 5 kilos. He is getting somewhat close, but not yet. He was 8 pounds 10 ounces as of last week. His heart murmur was just over 2 cm, where as last time it was 2.8 to 3. Once he is over 5 kilos, we will have a consult with the surgeon, and he will have the coil procedure done at Joe Dimaggio.I will keep you updated on that.She said that she is very pleased with how he looks otherwise. She is happy with his weight gain, and is happy that his heart looks very strong. I like that! We also saw his Neurologist for the first time. She did her exam and went over all of her concerns with him. She basically told us that she is going to keep on eye on him over the years to watch for any signs of developmental issues, or signs of Cerebral Palsy. Both boys are at risk of it because of the brain bleeds, but Patrick is more at risk because of the PVL. What we didn't know, is that the part of his brain that has the PVL, is a part that is more eye related and not motor like we thought. She said that she looks for lazy eye, and cross eyes. She asked if we were seeing an Opthomologist and we said yes, and that he said the eyes are doing well so far. He is still at Stage 0 Retinopathy. She said great. She said that he might need extra rehab, but our rehab guy will decide that.
Speaking of rehab, both boys had an appointment yesterday, and guess who was a little rock star? My little man Patrick! I fully went into this appointment thinking Brady would improve, and Patrick would be behind. Patrick showed me! They put him on his belly, and he sat his head right up for like a minute. He was alert, and followed all the toys, and sounds. He was able to rollover with assistance, and he basically shocked the heck out of me. Brady on the other hand, haha. He says rehab schmehab, who needs it? He held his head up for a few seconds, then got tired after a little bit. He did start to scoot a little on his knees with help. He didn't roll over that well, he just laid on his side, totally chill. He did hold a toy for a little bit. When he put him on his knee and bounced him, he sat up well. He didn't really follow noises, which is funny because he does it here at home. Who knows. In his defense though, he is a lot bigger than Patrick, so I think it is harder for him to do things. He is almost a big 11 pounds!
Look at that sexy body!! He works out!
Brady and his ducky.
I am a catch for real!
Just hanging out
I'm going to back track a little bit. Brady had a circumcision last week. What a freakin fiasco. They closest day they could do it was December 5th. They said that at his size, they just have to do a local and it will be about a 15 minute surgery. If, however, he gets to be more than 11 pounds, they will have to do anesthesia, because they get to strong, and they break out of the arm straps. That sounds so horrible, arm straps. Yuk. Anyway, we panicked a little because he was already close to 10 pounds, and it was still October. We figured that he would be over. The Nicu said to call every week and see if they have any cancellations at any of the hospitals. So, we did. They never were able to get him in early. Here is where the fiasco comes in. The day we made the appointment, they gave us a envelope full of stuff, and said, call so ans so number the day before the surgery day, and they will let you know what time to show up. Okay,, no problem. I go to work, and Craig calls. He then calls me at work, and says, you are not going to believe this. He called to get the time, and the lady says, we don't have him on the schedule, mom called and cancelled weeks ago.... BOOM!!! That is the sound of my head exploding. Craig says, nooooo, you messed up. She said no, I even checked the birth date, she cancelled. He said I promise you, she didn't and , and if you remember, we have talked a few times about getting him in earlier. Ill have my wife call you. She said oh no, I'll squeeze you back in. So, we go the hospital at 10:30 am. They give us a baby gown and booties, omg, so adorable and we dress him for surgery. Brady has not had anything to eat since 8 am. The doctor is in a surgery. He comes to see us with the anesthesiologist, and says normally we see babies first, but because of the reschedule, he has one more ahead of us. Grrr, Brady has already been crying for a half hour. The anesthesiologist says no, he has to go first, he is a preemie and is hungry. The doctor says so is te little girl next door and she has been waiting longer. Dude , I don't care, just figure it out. He says it will only take a few minutes for the other one, and off he heads, and the anesthesiologist comes back with a cup of sweet ease for Brady. Mmm sugar water, Brady approves. They finally get him in at 1pm. He is starving. We wait, he comes out, we go sit with him in recovery where he noms on a bottle of Pedialyte. We wait for like an hour. We then get moved to another recovery area, where we have to wait longer for him to recover and get discharge instructions. Holy annoying. The nurse says, I will let him go when he eats for me, let me know when you think he is ready. HE'S READY! We give him a 60 ml bottle, he downs it like a beer contest. Out we go. He is doing well with the recovery. They gave him a caudal block in his back so that it didn't swell as much. It looked way better than Patrick's. He is doing well, and has a recheck this week.
Waiting on surgery with my friend ducky.
In my surgery gown and booties.
Waking up from surgery.
Patrick is doing well with his surgery too. His incision from the hernia healed nicely. He still has a little bruising in his circumcision, but at our recheck today, he said it looks great.
I think that is all on the medical front. In terms of at home...well...it's been a little tough the last week. Patrick has decided that he no longer sleeps during the day anymore. From 7 am to 7pm, he is up. Not just up, like, hey I'm hanging around just looking at things up. No, it's hey I'm going to cry all day unless you hold me up. It's has not been a good time. I'm not sure what is happening, but I hope he figures it out soon. I am exhausted. It is hard to take care of Brady when I'm by myself. I can't let Patrick cry because his oxygen dsats, and he turns purple, so I have to let Brady cry sometimes, which sucks. Brady is doing quite well though. He gets a little fussy when he can't poop, but that's about it. He likes to just hang out in his swing and enjoy life. He gets woken up a lot by Patrick crying, which is annoying, but he gets over it quickly. They are both eating like champs. Brady is almost 11 pounds, and I'm sure Patrick is 9 this week. They are going to see the opthomologist tomorrow, and hopefully the eyes are doing well still.
Well, I think that might be it. I swear I am going to try to blog at least once a week. If not I will put new pictures up. Here are some random ones of the last few weeks.
Hanging out time.
Big bath time!
Taking a nap with my monkey
Hey Steiner!
Already hogging the couch
Nom Nom, I eat monkey!
Every time I put them together, Patrick cries, and it puts Brady to sleep.
Almost asleep...
Alright guys!! I love you all! Thanks for checking in!!!
The Connor Family!
Patrick came home the day before Thanksgiving.
We saw the cardiologist last week. She said that his heart murmur has closed a little bit more, but not enough to get out of surgery. I guess we misunderstood the last time that we were there about the surgery. We thought that he had to bulk up so that he would have a better chance of not having the surgery. That was wrong. He always had to have the surgery, she just wants him to bulk up so that he is ready for it. I guess they can't do it unless he is over 5 kilos. He is getting somewhat close, but not yet. He was 8 pounds 10 ounces as of last week. His heart murmur was just over 2 cm, where as last time it was 2.8 to 3. Once he is over 5 kilos, we will have a consult with the surgeon, and he will have the coil procedure done at Joe Dimaggio.I will keep you updated on that.She said that she is very pleased with how he looks otherwise. She is happy with his weight gain, and is happy that his heart looks very strong. I like that! We also saw his Neurologist for the first time. She did her exam and went over all of her concerns with him. She basically told us that she is going to keep on eye on him over the years to watch for any signs of developmental issues, or signs of Cerebral Palsy. Both boys are at risk of it because of the brain bleeds, but Patrick is more at risk because of the PVL. What we didn't know, is that the part of his brain that has the PVL, is a part that is more eye related and not motor like we thought. She said that she looks for lazy eye, and cross eyes. She asked if we were seeing an Opthomologist and we said yes, and that he said the eyes are doing well so far. He is still at Stage 0 Retinopathy. She said great. She said that he might need extra rehab, but our rehab guy will decide that.
Speaking of rehab, both boys had an appointment yesterday, and guess who was a little rock star? My little man Patrick! I fully went into this appointment thinking Brady would improve, and Patrick would be behind. Patrick showed me! They put him on his belly, and he sat his head right up for like a minute. He was alert, and followed all the toys, and sounds. He was able to rollover with assistance, and he basically shocked the heck out of me. Brady on the other hand, haha. He says rehab schmehab, who needs it? He held his head up for a few seconds, then got tired after a little bit. He did start to scoot a little on his knees with help. He didn't roll over that well, he just laid on his side, totally chill. He did hold a toy for a little bit. When he put him on his knee and bounced him, he sat up well. He didn't really follow noises, which is funny because he does it here at home. Who knows. In his defense though, he is a lot bigger than Patrick, so I think it is harder for him to do things. He is almost a big 11 pounds!
I'm going to back track a little bit. Brady had a circumcision last week. What a freakin fiasco. They closest day they could do it was December 5th. They said that at his size, they just have to do a local and it will be about a 15 minute surgery. If, however, he gets to be more than 11 pounds, they will have to do anesthesia, because they get to strong, and they break out of the arm straps. That sounds so horrible, arm straps. Yuk. Anyway, we panicked a little because he was already close to 10 pounds, and it was still October. We figured that he would be over. The Nicu said to call every week and see if they have any cancellations at any of the hospitals. So, we did. They never were able to get him in early. Here is where the fiasco comes in. The day we made the appointment, they gave us a envelope full of stuff, and said, call so ans so number the day before the surgery day, and they will let you know what time to show up. Okay,, no problem. I go to work, and Craig calls. He then calls me at work, and says, you are not going to believe this. He called to get the time, and the lady says, we don't have him on the schedule, mom called and cancelled weeks ago.... BOOM!!! That is the sound of my head exploding. Craig says, nooooo, you messed up. She said no, I even checked the birth date, she cancelled. He said I promise you, she didn't and , and if you remember, we have talked a few times about getting him in earlier. Ill have my wife call you. She said oh no, I'll squeeze you back in. So, we go the hospital at 10:30 am. They give us a baby gown and booties, omg, so adorable and we dress him for surgery. Brady has not had anything to eat since 8 am. The doctor is in a surgery. He comes to see us with the anesthesiologist, and says normally we see babies first, but because of the reschedule, he has one more ahead of us. Grrr, Brady has already been crying for a half hour. The anesthesiologist says no, he has to go first, he is a preemie and is hungry. The doctor says so is te little girl next door and she has been waiting longer. Dude , I don't care, just figure it out. He says it will only take a few minutes for the other one, and off he heads, and the anesthesiologist comes back with a cup of sweet ease for Brady. Mmm sugar water, Brady approves. They finally get him in at 1pm. He is starving. We wait, he comes out, we go sit with him in recovery where he noms on a bottle of Pedialyte. We wait for like an hour. We then get moved to another recovery area, where we have to wait longer for him to recover and get discharge instructions. Holy annoying. The nurse says, I will let him go when he eats for me, let me know when you think he is ready. HE'S READY! We give him a 60 ml bottle, he downs it like a beer contest. Out we go. He is doing well with the recovery. They gave him a caudal block in his back so that it didn't swell as much. It looked way better than Patrick's. He is doing well, and has a recheck this week.
Patrick is doing well with his surgery too. His incision from the hernia healed nicely. He still has a little bruising in his circumcision, but at our recheck today, he said it looks great.
I think that is all on the medical front. In terms of at home...well...it's been a little tough the last week. Patrick has decided that he no longer sleeps during the day anymore. From 7 am to 7pm, he is up. Not just up, like, hey I'm hanging around just looking at things up. No, it's hey I'm going to cry all day unless you hold me up. It's has not been a good time. I'm not sure what is happening, but I hope he figures it out soon. I am exhausted. It is hard to take care of Brady when I'm by myself. I can't let Patrick cry because his oxygen dsats, and he turns purple, so I have to let Brady cry sometimes, which sucks. Brady is doing quite well though. He gets a little fussy when he can't poop, but that's about it. He likes to just hang out in his swing and enjoy life. He gets woken up a lot by Patrick crying, which is annoying, but he gets over it quickly. They are both eating like champs. Brady is almost 11 pounds, and I'm sure Patrick is 9 this week. They are going to see the opthomologist tomorrow, and hopefully the eyes are doing well still.
Well, I think that might be it. I swear I am going to try to blog at least once a week. If not I will put new pictures up. Here are some random ones of the last few weeks.
Alright guys!! I love you all! Thanks for checking in!!!
The Connor Family!
Friday, November 16, 2012
Patrick's surgery
Hi there to all my friends! I just wanted to take a minute before Brady wakes up to tell everyone who Patrick did during his surgery. We went to the NICU at 10:30 to say hello to him and wish him luck. When we arrived, they asked us to wait outside while they intubated him, and took chest x-rays. I was okay then, but as I waited I started to get nervous. We didn't ever see the doctor, but he must know us well because he came out and said hello, and said don't worry, he is okay, but fighting us like usual! He doesn't want the tube down his throat, and he is wiggling a lot. They were going to give him some sedation to help. After they were done, the anesthesiologist came out to get consent for surgery, and we headed in to say hi. This is what we saw.
I don't like it!
More catheters! He has so many pokes in his arms and legs! I guess they weren't the same catheters as last night, which means they didn't stay in. His little hands were all bruised and poked. His legs were poked. He had a cath on the side of his leg by his foot. Yuk. I know what it is like to have multiple catheters in you, and be poked like 20 times in two days. It sucks. I wasn't happy, but he needs fluids, so it is what it is right? I feel like I say that all the time. He was intubated again, which I also hate. They loaded him up in the transport bed, and tried to get him ready to go down to the O.R., but it wasn't working well for them.
I wasn't sleeping.....hehehe
Ouchie!
After giving two doses of Fentanyl, they thought they were on their way. Ha ha ha. They don't know little Patrick. He wasn't having any of that. They couldn't get him to stop moving, so they had to give him two more doses of a drug called Verseed, which makes them totally still. We just laughed. The doctor laughed too, he knows him well enough to know that wouldn't work. They give him his dose, and we head downstairs. We met the O.R. nurse who was very nice, and very calming, which helped, because the longer the hallway was, the more time I had to get nervous. By the time we got to the room, I was getting twitchy, and my belly was nervous. They went over what they going to do, and told us how long it would take. They brought us to the waiting room, and we waited. I would like to give a big shot out to my co-worker Heather, who played phone games with me the whole time, and kept me laughing. I would have been anxious otherwise. You rock! After an hour, we called upstairs and found out that he had been moved back to the NICU. We headed back up to see him. He looked so sad. His eyes were dark red, his nose was red, he looked so swollen. She showed us his incision, and his weiner. He looked very upset. She asked if I wanted to hold him, and of course I said yes, but felt bad when she moved him, because he cried right away. As soon as I held him, I started to tear up because it crushed me that he looked so sad.
He was a little fussy afterwards, but seemed to do okay. The doctor asked if he was fussy, or if we thought he was in pain, and we said we thought he was okay. He had given him Tylenol. He said look at that face..I am going to give him morphine if he needs it. We said okay, whatever makes him not painful. He feel asleep shortly after, and his nurse tonight said that he just ate a little bit. He was medicated and sleeping after that. They said they were going to try to get him home maybe Monday or Tuesday, but that is only if the cardiologist sees him first. She will decide if he is going home on oxygen or not. I will surely keep you updated.
Thanks to everyone who sent prayers, thoughts, and hugs our way! We appreciate all of it!
I will put some pictures up of Brady this week. He is waking up now! Got to go!
Love to all!
The Connor family!
Monday, November 12, 2012
Surgery for everyone!
Why hello there everyone! Oh man, I have been the worst at blogging! It's not for lack of trying. I have had plans to write a few times this week, but as soon as I started, Brady needed something, so I didn't get a chance. that is the new story of my life. Okay let's start with my little Patrick.
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!
I am ready to Rumble!
What! We are watching a movie tonight?
Can my pod buddy watch too?
Drive in movie night with my family and my pod buddy.
Nice and cozy after my bottle
In my cold weather onesie, flannel baby, yea!
It was cold outside, but I was nice and warm!
Getting ready to go to bed for the night, or until my next feeding!
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!
Brady at surgeons office
Holding my toys! Mom, next time wipe my face, geez.
Watching TV with dad.
Early steps. I'm learning already!
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!
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!
Monday, November 5, 2012
So much to talk about
Hi everyone! How are you all doing? I know it's been awhile, but that's because we have been super busy over the last week. I'm not sure where to start. I think we left off with Patrick going back in the hospital. He had a positive result for a urinary tract infection. Well, I wish that was all. I remember I told you all about his PDA and the cardiologist. I will pick up from there. Patrick is still in NICU. He has been there since last Friday. I don't think he is coming home any time soon. The first few days, he was put back on the nasal cannula. Some nurses kept it on him, some didn't. Sometimes he goes down on his oxygen , sometimes he goes up. Sometimes, they up his liters, sometimes they drop it. Sometimes it works, and sometimes it doesn't. They have all been frustrated by this, as have we. There were plans on him coming home today, but we knew that wasn't going to happen. The impression we get from the doctors, is that it is going to be the cardiologist decision to send him home or not, and her decision on whether or not it will be with oxygen. Here is the situation though. Patrick still has a hernia that needs to be repaired. He also needs to be circumcised too. Normally the circumcision is an outpatient, thing, but the hernia repair is not. He needs to be intubated for the hernia repair. I know, right? We just keep going backwards here. We are in a real situation here right now. I want him home so bad that I'm actually started to get irritated by it. It's actually ticking me off at this point. I am tired of making the drive, I am tired of the monitors, I am tired of the gowns. I'm pretty sure my skin layers have gone down dramatically from scrubbing with a plastic brush every day. That being said, Do I trust Patrick enough to have him come home, after a hernia/circumcision repair, all the while still having a unstable heart, and weak lungs. Not in any way, shape, or form. Did we ask them to do it there before he goes home so that he could be monitored 24 hours, so that we knew he was stable? Hell yes we did. I am not playing games with him anymore. I do not want him to come home, get another infection, and have to go back. Sooner or later, they aren't going to let us back, and he is going to have to go to pediatrics. We don't want that. The deal is, they can't do the surgery unless the cardiologist says it's okay, then gets the anesthesiologist to agree. So, tomorrow, he is having a repeat echo to see how he has progressed this week. She will make the call at that point on whether or not to let them do the surgery or not. If not, we have to wait until later. His hernia has become worse in the last week or two, so we don't want to wait much longer. Unfortunately, if his heart isn't stable enough to have it done, we have too. We are in between a rock and a hard place. He is doing well, but still has a lot against him. On a brighter note, he is eating up to 120 mls of food now! I can't believe that! As of tonight, he is 7 pounds and 8 ounces. Yea, little man! That is a big thing, because him getting bigger only helps his PDA. The bigger he gets, the bigger the chance the murmur will shrink which means he might not need the surgery. Let's see what else? I think that might be it. He is done with his antibiotics, which means he is done with his head catheters. He had one in the back of his head last week. Yuk. It was hard to look at. I think he had a total of like 10-13. he kicked out three in one day. Naughty little man! haha.
Ouch, I hate needles in my head!
I hate nasal cannula!
Mom, I took this out!
Agh, my paci fell out!
Sleeping, but just for a second..
Brady
Brady is doing well. We went to he eye doctor on Wednesday, and he said that it was time to treat his right eye. He said he sees some stage three R.O.P. and that part of his eye was starting to raise up, which concerned him. He said that the laser would be the best way to go. I guess the Avastin shot that they both had, doesn't work as well after your due date. He said the laser is better in this situation, and that because his eyes are more developed, there would be less peripheral damage. Off we headed to the NICU. It's funny, we went from 1 kid, to 2, then 1, then 0. Like I said, it was a busy week. We headed in to get admitted at 6am. That's right, 6 am. His primary nurse met us in the lobby, and we headed upstairs. He got to have his own little room. It was an isolation room, because they had to test him for RSV, and for the flu. As long as he was negative for those two, he could go with his brother when he woke up. They put in a cath. in his head, and started their work. They had to sedate him, and it didn't work that well. I guess he is less tolerant now. It took him about 40 minutes. He said he shot the eye like 2300 times or something crazy like that. He feels pretty good about the whole thing, and he wa able to get everything. He is getting eye drops like every 6 hours. He is on two. While he was there, we also found out that he has Thrush. No wonder he hasn't been eating as much. His little tongue hurts. He also got medicine for that. They also gave us some lotion for his head, because it was a little dry.The nurse then said that they pulled some blood, because when they out the cath in, it bled a little more than they wanted it too. We also told them that at the cardiologists office, that the blood pressure cuff gave him petechia from squeezing to hard. I guess because of those two factors, they wanted to make sure everything was okay. It came back that his hematocrit and hemoglobin were sl. low, but that his reticulacytes were fine, so they were okay with it. We have 5 appointments for him this week. We had rehab today. We saw his therapist, Tim, and he said he is happy with were he was at. He has a strong neck, and he is moving his limbs well. he reacts to sound, and is alert. We will recheck in a month. We also have a follow up with the eye doctor. We start Early Steps this week, which is a program for early development for both of them. They will evaluate them and teach us how to, well, teach them things. They will monitor their motor skills, and cognitive skills, and try to catch any developmental problems before they start to get worse. It is from birth to 3 years old. I am excited to see what they teach us, because I have heard that the kids who have done this are super smart. We also have his surgery consult this week to discuss circumcision, and then his pediatrician. Wheww, it's going to be a rough week.
Sleeping at home
Waiting to go to surgery...
After my eye surgery, still sedated.
Hanging out next to my little brother after surgery. We finally got to be next to each other!
My second Primary, Melissa
I was FrankenBrady for Halloween
Holding my head up like a big kid.
Alright kids, that is all for now. I will let you know the word on Patrick's surgery as soon as I know!
Love to all!
Em, Craig, and the boys!
Brady
Brady is doing well. We went to he eye doctor on Wednesday, and he said that it was time to treat his right eye. He said he sees some stage three R.O.P. and that part of his eye was starting to raise up, which concerned him. He said that the laser would be the best way to go. I guess the Avastin shot that they both had, doesn't work as well after your due date. He said the laser is better in this situation, and that because his eyes are more developed, there would be less peripheral damage. Off we headed to the NICU. It's funny, we went from 1 kid, to 2, then 1, then 0. Like I said, it was a busy week. We headed in to get admitted at 6am. That's right, 6 am. His primary nurse met us in the lobby, and we headed upstairs. He got to have his own little room. It was an isolation room, because they had to test him for RSV, and for the flu. As long as he was negative for those two, he could go with his brother when he woke up. They put in a cath. in his head, and started their work. They had to sedate him, and it didn't work that well. I guess he is less tolerant now. It took him about 40 minutes. He said he shot the eye like 2300 times or something crazy like that. He feels pretty good about the whole thing, and he wa able to get everything. He is getting eye drops like every 6 hours. He is on two. While he was there, we also found out that he has Thrush. No wonder he hasn't been eating as much. His little tongue hurts. He also got medicine for that. They also gave us some lotion for his head, because it was a little dry.The nurse then said that they pulled some blood, because when they out the cath in, it bled a little more than they wanted it too. We also told them that at the cardiologists office, that the blood pressure cuff gave him petechia from squeezing to hard. I guess because of those two factors, they wanted to make sure everything was okay. It came back that his hematocrit and hemoglobin were sl. low, but that his reticulacytes were fine, so they were okay with it. We have 5 appointments for him this week. We had rehab today. We saw his therapist, Tim, and he said he is happy with were he was at. He has a strong neck, and he is moving his limbs well. he reacts to sound, and is alert. We will recheck in a month. We also have a follow up with the eye doctor. We start Early Steps this week, which is a program for early development for both of them. They will evaluate them and teach us how to, well, teach them things. They will monitor their motor skills, and cognitive skills, and try to catch any developmental problems before they start to get worse. It is from birth to 3 years old. I am excited to see what they teach us, because I have heard that the kids who have done this are super smart. We also have his surgery consult this week to discuss circumcision, and then his pediatrician. Wheww, it's going to be a rough week.
Alright kids, that is all for now. I will let you know the word on Patrick's surgery as soon as I know!
Love to all!
Em, Craig, and the boys!
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