Connor Twins: December 2012

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.