Tonight's post is called "One step forward, and 10 kicks in the nuts." In close second was "Retinobullshit" or "Retinopashit." Here is why. Well, wait let's start from the beginning. One of the biggest side effects of being on the oxygen at high levels is R.O.P, which stands for Retinopathy of Prematurity. It is where blood vessels grow on the back of the eye, and sometimes into the eye. These vessels should not be there, and they cause havoc. At worse case they can cause blindness. For this reason, they try to keep the babies at the lowest oxygen stetting possible. Some kids are as high as 90-100% which is bad. The boys, thank god, never went above 40%, and have been maintained on anywhere from 30 % to room air, which is great! Now here is where I get annoyed. Last week, the eye doctor left a message and said that there were no signs of R.O.P. and that the eyes were just underdeveloped. Okay, great, I was preparing for the worse, but this was good news. Keep in mind that we have known about this for awhile, and were preparing for this day. We have even talked about it with another parent in the NICU whose boy was going through it, and was being watched. So, why I cried when I heard it, I don't know, I guess just frustration, and the thought of what the F else could go wrong? I mean I feel so frigging bad for these boys. I am learning, that as a parent, watching your kids go through this shit is horrible. I almost wish they were they older so I can explain to them what is happening, but then thank god that they are not, because they won't remember any of this. I will though, and it shits on my heart each day. I always knew when I had kids that I would be overly, obnoxiously protective of them. I swear they are never leaving the house, I will wrap them in pillows and helmets if they do. (Not really, I have so much fun stuff for us to do!) Anyway, The eye exams are done on Thursday. Again, last week okay, this week, not okay. I guess what the doctor's eye's see, and what an actual retinal camera can see is a big difference. Here is how it went down.
"His this is Dr. scare the shit out of you with my horrible bedside manner."
"Hi, how are you"
"Good, I didn't get to see the boys last week because I was on vacation."
Can you get to it, because the friendly small talk is eating my stomach away.
"I looked at the boys today and have the pictures from the camera."
"Okay"
"I think we should have a talk...."
Insert heart stopping, stomach turning, initiate gag reflex, may need to change my underwear.
he then goes on to tell me the boys have R.O.P, and it is in the posterior of their eyes which can be very bad if it gets any worse. There are two options, a laser surgery, and a chemo drug called Avastin. I don't know if that's how you spell it, and I don't care, as long as it makes our kids not blind. He says that with the laser, they could lose side vision, and never be able to get their license. he thinks the Avastin would be good for them, but there is no studies as to how it will affect them down the road, who knows. I asked him flat out, is there a chance that they could be blind, (as I frantically write down info, while trying not to completely lose my shit in tears.) He said he is hoping to avoid that. On that note, don't be surprised if I get a phone call in a few weeks saying they need the shot, or surgery. I said okay. I hang up the phone, and try to explain to Craig whatever I could remember while crying, and and doing the ugly choke back. I ended it with I don't know what he said. I pulled myself together and tried to explain it again. Then we went out and ran errands. On the outside, I was quiet, and calm. On the inside I felt like I wanted to freak out, yell, and throw shit around. The scene that comes to mind is this....I am Will Ferrell
Emily having a mental breakdown inside her head...
I mean what else could go wrong!!!! Sadly, a million mor fucking things. Let's do a count.
Brady Patrick
1. Brain bleeds check check
2. Heart Murmurs check check
3. Eye infections check check
4. Belly infection check
5. R.O.P check check
6. Blood infection check
7. Tracheal infection check
8. Blood transfusion, Platelets, and Plasma. check, check, check, check....
Can it get worse? YES! IT CAN! Can you believe that shit? It can get horrendously worse. This roller coaster blows chunks! It is the dumbest of the dumbest roller coasters, and I if I didn't love those little boys with the deepest depths of my heart, I would pull the lever, and scream, get me the fuck off of this ride!!! But, those little boys have me so wound around their tiny, itty bitty fingers already, that I continue to stay strapped in, and wanting to vomit as we go down every hill. Man I love those little punkeroos. I can't even stand how much I love them. And I swear, when I finally meet that doctor (after he gives the shot or does the laser, cause I don't want him to eff up the boys eyes) I am going to punch him right in his fucking face. I think we need to have a talk....who the fuck says that?! I mean, I am not stressed enough,and that is how you present it to me. I could rattle off about a million and two other ways to ease into that conversation, but that's the one you frickan choose. Freaking AHole. AND! We saw the other parents that we talk to leaving last night, and the mom was crying. They must have had a bad exam too. that's another punch to his face! Deep breath, that felt good. Okay, so moving on. Thankfully, Craig and I had an eye doctor appointment after talking to Dr. No tact. We asked about the boy's situation. The doctor said that her husband gets the shot. She also said that it is amazing, and that she has seen peole come in with jacked up eyes, get the shot, and they come back to see her, and she is amazed by the results. She also went over what exactly retin-crap-opathy is again. We felt a lot better afterwards. We then waited for the doctor to speak to her about some questions we had about the shot. She basically explained it like this. She said there are veins that show up on the back of your eye that sometimes grow around it or in them. She said they are squiggly, and cause problems. She said the Avastin, in simple terms, bathes these veins,a nd makes them normal. However they shoe goes right into the eye ball kids. Eww. She said they only have to do it once, and normally they have very good results. If it doesn't work, they go the the laser. What sucks about the laser, is that once it burns those veins, they are toast, meaning that that can cause some loss of vision in spots. So, once again, I get on my knees and pray that the shot does wonders, and that they will be okay. I guess sometimes it can progress rapidly, so he will be doing checks on the boys weekly. He will let us know when it is time. For now on though, just to be safe, I will no longer be posting about how fabulous the boys are doing. We will just say they are stable. Why you ask? The last two times I have posted they were doing great, we had a big whammy the next day. Let's just play it safe for now on okay? Mmmkay. Alright deep breath...Let's move on to "how cute can you be type pictures." Why are they so cute? If Craig was typing this blog he would say because they are mini me. It's because they get to wear hats now!!!!
Patrick
Besides the Crapopathy, he is "stable," haha. He is on room air, and we have hopes that he will go on CPAP this weekend maybe. Might this affect his eyes more? Yes, but it will remove the tube that has been harboring the infection. Good and bad, remember. He is a whole 2 lbs and 13 ounces. He is still getting his 7.5 ml of food. They have been giving him formula and milk from me.
Brady
Brady is also "stable." He hit the big 3 pounds today!! Can you believe that? I think he was actually 3 lbs and 1 ounce. he is at 25 ml of formula. he seems to be stable on his Nasal cannula. He likes his new bed, but we do not. It's hard to do things when the top doesn't pop open. He was a little squirmy tonight, but he did okay. I have only been holding him for a little bit because he starts to get wiggly, and they turn up his oxygen. I guess we have to be careful with that now.
Alright everyone! Thanks for reading!!!
Talk later!
Em, Craig and the snuggle twins.
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