We have a surgery date!

Hi there everyone! Long time, no blog. It's not for lack of things to talk about, it was because blogger was still being fussy. Today is the first day that I have been able to put pictures on! yea!

We had Patrick's appointment today at Joe Dimaggio. Wow, what an awesome hospital. It is like a baseball hall of fame, but with kids in mind. It was really cool. Lots of cool decorations, and security at every corner. They do not play around when it comes to kids, which is nice to see.

We went today to meet Patrick's doctor that will be part of his surgery team. He is having a cardiac catheterization.  They basically just went through all of his history with us, then showed us what he would be having done. They are placing a Duct Occluder. They go into his groin, and go up into his femoral vein/artery, which then goes up to his heart. Are you shitting yet? Yeah I am.  They basically put, what looks like a small mesh kitchen strainer, into his heart, and it clogs the hole, and stays in forever.

Here are some pictures. Sorry the flash shows on some of them, I can't turn all the lights on, boys are sleeping...miracle right?

Did anyone out there have one of those three tiered metal/ mesh fruit baskets that were different sizes in the 80's? Yeah, you know what I'm talking about, it looks just like that.  I just read through the pamphlet. It gave me 20 bad things that can go wrong, and only two that were good. 1. Short hospital stay. 2. No scar...well thank god for that....Seriously though, they have scars all over their bodies, they get more noticeable as they get older. You can see every cath hole. It sucks, but chicks dig scars right? Keanu reeves and Chris Cagle can't be wrong...

Anyway, He is going in in mid Feb. I am very nervous, but it needs to be done. This is the last thing that is keeping him from bulking up, and being 100 %, so we really want it done.  I think the doctor was surprised to hear us say yes to it so quick. This isn't our first rodeo, we know the good and bad of all surgeries.

Anyway, Patrick was very good for his appointment. The doctor said that the procedure wasn't a rush since he has had it all of his life, and it's not causing him any discomfort at this point, and it's not affecting his eating or breathing.  He said the risks of not doing the surgery actually outweigh the risks of having it done. Did I say that right? Yes?  He could get pneumonia, and other lung issues like blood leaking into them. No thank you. Anyway, that is the word on that, and I will keep you posted for sure.

                                                                              Patrick at Joe Dimaggio. This was after he found out he had to have surgery..poor kid.

Anyway, all else is good here. The boys have been doing well. They eating like champs! As of last week, Brady is a big 15.6 pounds, and Patrick is 11.4 pounds. They have started Brady on Rice cereal with his formula. He has finally made the chart for his age group. Yeah! 

They are both doing well in rehab. Brady rolled over in front of them for the first time which was awesome, and Patrick, not to be shown up, did it a second after, haha. Patrick is going to have an OT evaluation soon to see if he needs extra help. We are still waiting to find out when that is. 

Brady has discovered TV the last two weeks. I don't let him watch junk, don't worry! I know that there were a bunch of moms that just read this, and shook their head at me for letting him watch. To that I stick my tongue out and blow raspberries at you and here is why.
1. I have two kids that had stage two retinopathy, who at one point, could have had vision problems, and still can, but thankfully are not blind. If I see them starring at something and they are fascinated by it, that shows me they can see, and that is awesome.
2. He loves the bright colors and stimulation. He kicks his legs to the music, and we dance and sing to it. That is good for his rehab since he needs to move his arms and legs. It's also good for his learning/speech for Patrick.
3. If you don't have twins, you have no idea what it's like to have two children screaming bloody murder, and you are by yourself. If I can turn on Mickey Mouse Clubhouse, and let him dance, and give me five minutes to take care of Patrick, I'm doing it. Nuff said...

Patrick is not as interested in tv yet, but he is starting to look at it, which is awesome, because his vision could still be a problem. If he starts watching, I will be overjoyed. He still could have vision loss because of his PVL. BTW, did I ever show you what the doctor uses for their eyes?

                                                                                     yeah, so they hold their eyes open with those speculums, and then they poke those metal rods covered in cotton into their eyes.

                                                                                       Also, I hold their arms down and they scream. It's an epic time for all...

Any who, here are some recent pics from this week of the boys..

                                                                  Brady in his chair. He refuses to lay back anymore. If he is not sitting up, he is not happy.

                                                                             Patrick...saving lives.

Alright everyone, I'm exhausted and it's only 930pm. I'm am off! Thanks for reading!

Love to all!
Em, Craig, Brady and Patrick

Cardiologist info

Hey there everyone! Blogger is still not letting me post pictures! What is the deal?! I don't know. I have my sister on the job. Any who, we went to the cardiologist today. What an appointment.... Normally, Brady is very happy and doesn't really mind doctors. Patrick is a little more fussy, and needs to be consoled a little more. Not today. Brady lost his mind today! He did well up until she had to take 8 sticky leads off of his chest. Then the tears started, which then lead to screams and his whole body in sweats, and beat red skin. Oh my goodness.  I even tried Sweet-ease, and he could care less. They were able to get an EKG on him. She said that he looked good, and she didn't think that he needed an echo, or any surgery. Great. My little Patrick was a champ today. Craig said he didn't even cry. He just took his snack while she did the echo. He did great for his blood pressure and EKG too. It was like Bizarro Connor kids today. Freaky Friday, only Monday. She said that Patrick's PDA didn't close at all, and that he needs the surgery.  She is going to send over the pictures to the doctor at Joe Dimaggio, and he would give us a call about setting up an appointment.  She said they normally keep them for a day or two depending on how they do. She said they would like him to be a little bigger, but if they think it is serious enough, they will do it anyway. He was a big 10 pounds 5 ounces today. He needs to be 11 pounds. So close! Brady was 14 pounds, 3 pounces, hahaha. She said he looks very good otherwise. She said that now that he is bigger, she had to take a minute to figure out who was who! She said once he has the surgery, he will bulk up fast. Right now he is staying little because his heart is working way harder than it should, so he is burning calories big time. She said afterwards, he should plump up, and look just like Brady. Oh boy, I am going to have to get a second job to pay for these kids to eat! Hahaha.

I 'll keep you update on the situation. This surgery, god willing, should be our last bad situation for my little man!


Still working on pics everyone! Sorry!

Em, Craig, Brady and Patrick

Merry Christmas! Happy Holidays and a Happy New Year!

 Why hello there to all of you! Happy Holidays!!! I hope everyone had a good season, and enjoyed time with family and friends. It has been busy around here I tell you! Between work, the holidays and a few appointments here and there, we have been non-stop.  I meant to write last week, but as soon as I sat down,  a baby started crying, and that was that. Right now, they actually both fell asleep, but it's not going to last for long, so let's get started!

I have no idea where I left off, so let's just start with Patrick's ultrasound, because I don't have that much to say about it. We went to the our home away from home, BGMC, and had a quick ultrasound. It was the same thing that Brady had a few months back. They were just checking his kidneys to make sure that there weren't any complications from the urinary tract infection. We didn't hear anything from them, or the pediatrician, so I think we are good. We stopped by the NICU to see our old friends, and they were all very excited. They couldn't believe how big they were getting! Patrick had to chance to snuggle with Amanda, his day primary nurse. Brady was cuddled too, don't worry!

                                                                                 I love this little picture because his little tushy is hanging out! haha.

Last time we talked, Patrick was still on oxygen. We had gone to see the Cardiologist and she had said to leave him on it for awhile, but if he does well on it, to start testing him, and take it off for a hour to see how he does. I didn't do this, because I was to scared. Craig isn't scared, so he did, haha. He was actually sating in between 92-100, so Craig decided to try him off of the oxygen, and he did well. We kept him during the day, but on it at night. Then we took it off of him at night. The monitor was always on, because we wanted to see how he did. Once he started breathing better, and sating high all the time, it all went off. I put it on him twice a week or two later at night, when it looked like he was breathing harder, but he was okay, so I took it off. I don't miss it. It was loud, woke everyone up at night, and was a pain to carry around. Now it is with us, but not on him, just in case. We see the cardiologist this week so we will find out about his surgery. He is up to a big 9 pounds 13 ounces as of Wednesday, so he is almost at his surgery weight. This is great, yet so scary.

Next, we had Christmas! Christmas was fun, yet a little hectic. There was a lot of people, and it was loud, so the boys were a little overstimulated. On Christmas eve, we opened a few presents from family, and had a nice dinner. On Christmas day, we opened presents from Santa, and then headed to Craig's family for dinner and more presents. A few days before the holidays, I dressed the boys up and had a little photo shoot. This did not go well, and yet, I laughed the while time. They both dressed up in their Christmas outfits, and I sat them up under the tree. Brady, was great, he always smiles and is happy. Patrick on the other hand, is a little fussy when it comes to sitting up and staying still. I had to give him Sweet-ease, which is a sugar water that they use to calm down infants in the hospital, in between each shot to get him to stop crying.

                                                                            Brady always happy, Patrick always crying!

                                                                            I love Christmas!

       My little Elf!

                                                                                Reindeer Games

                                                                                Candy kiddie

                                                                                 Brady Claus

                    Gingerbread Patrick

After I took what I needed, I rushed Patrick the changing table, changed him out of his hot clothes, and got him settle in bed. The whole time I was doing this, (as I'm sweating from running back and forth) I was calling to Brady, telling him he was being so good because he was being so quiet, and that I would be right there. I run over to the tree, and this is what I find...

                                                                                 Hahaha, photo shoots are hard work!
Here are some of the pics of  and Christmas Day!

                                                                                 Gettting ready to open our stockings!

                                                                                  Yea, our first stockings!

                                                                              Dad's first presents from us.

                                                                             Our presents from Santa, mom and dad.

                                                                           Some more presents!
There was a lot more, but I'll save you the boredom...

I guess next was New Years night. We didn't do a lot. I did, however, dress the boys up in their little Northwestern Tee shirts for the big game. They won!!!! Whoo hoo!
The neighbors brought their fire pit over, and we sat outside, and watched a few fireworks. It was fun. The boys slept through it, but I decorated their bassinet while they were sleeping, and then put hats on them afterwards, haha.

I think the last thing appointment was Patrick's Early Steps. We went yesterday, and of course, Patrick was tired, so he didn't perform well. We woke up at 7 am, like always. He took two naps for about 20 minutes. We headed out for our appointment at 1130, since we had to drop Brady off at grandma's house. Craig had to work, and I couldn't do this appointment by myself with two kids. They ask a lot of questions.We got there at 1230, for a 1pm time. I see his old NICU doctor, and I laugh. He is a older guy with a heavy Italian accent, who speaks very quietly. When we first started in thr NICU, we used to have the nurses translate for us, because he was hard to understand. At the end of our stay, we understood him completely, which tells me that we were there to long. He used to mess up their names and he would laugh. On a few occasions he would call them B ratty and Pay-trick. Then he would say I mean Brady and Patrick, hahaha.We ended up waiting in the lobby for like 30 minutes. Patrick starts crying because he is hungry. I feed him half a bottle because I know they like to see him eat. The girl at the front desk hands me paperwork, and I fill it out. Meanwhile there is another lady next to me, who I didn't pay any attention to, and I went back out to hand them my stuff. They tell me I can feed him, and he is happy to hear that! I go back into my waiting area with the quiet lady, and I look up at her baby....I know this kid! It was Patrick's neighbor in the NICU, the one he used to watch movies with! Their beds were next to each other for the month that he was re-admitted.We started talking for awhile before we went in. It's now almost 2pm. We get brought into a room, and wait for another 30 minutes...ughhh, Patrick is starting to get annoyed. Finally his doctor comes in. He says "Oh Patrick...how are you doing today? (as he chuckles to himself.) I laughed and asked him what he did when he saw his name on his appointment book today? He laughed.  He did an exam, and asked a bunch of questions, then the OT girl and other, whatever, she was, did her exam. The results were pretty much the same thing as Brady. Only his goals were harder, which is dumb being that he is a little more behind than Brady. They graded him on looking around and responding to voice. He didn't really look at the nurses, but as soon as he heard me, he focused right in on me. He lifted up his head during tummy time, but not long enough to please them. The OT girl said no more back time, only on tummy for now on, that will help his head to, because she said it is to flat. I laughed. First of all, they are sleeping on their back. Second, when I am home for 24 hours, I will lay them down in whatever position it takes for them to get a nap in.  Third, they lay on their tummy for about 10 minutes before they get pissed and try to smother themselves, and begin to angry rage cry. So, again, not happening. I just said okay and smiled. They said rehab twice a week. They want him in OT twice, and PT twice. Rehab said that they don't need to be there that much. I will let them fight that out. I want to give Patrick as much help as he needs. If they say 5 times a week, I'll go. End results. Brady has to learn to hold his head up for thirty seconds, sit up for 5 seconds, and rollover. Patrick, who needs extra help, has to hold his head up for a minute, sit up for 5 seconds, roll from front to back, back to front, and grab for toys on his belly......hahah, what? How does he have more stuff to do? Silly nurses.

                                                                                  My little Patrick, waiting for our appointment.

I think that is it for now. We see the Cardiologist on Monday, so I will let you know how that goes!


Love to all!
The Connor Family