Hey everyone, how are you? We are okay here. It was a rough day for the boys today, and for mommy. First, let me start by asking this. Have we not learned our lesson in the past about celebrating achievements, and being overly excited about things. I, apparently, have not learned my lesson. Every time we get to the top of the roller coaster, we dip down the hill of hell. I was so excited last night about Patrick and Brady's good things, that I forgot one major detail. I remembered this morning when I heard the NICU ring tone what it was. It..was..eye doctor..Thursday. Ughhh. As soon as I heard the phone I braced myself for the news. It started off with, I have bad news. Great, I love starting off my day with bad news. I can't wait to know what it is. He then said that Patrick's eyes have become a lot worse, and it is time to treat them. We knew this was going to happen because for the last two weeks he has been on higher oxygen. I guess it was just enough to push him over the edge. He went over the information about the Avastin, and the laser surgery. He said that there was blood in the right eye, and he said that he wasn't sure that the laser would be able to get through the blood to fix the problem. He said that he could still do the left eye with the laser, but that he would lose some of the peripheral vision. When you use the laser, you are killing those vessels, so they lose all ability to work. With the shot, which also has risks, you are fixing the vessels so that you can still see. The biggest risk is that the eye can become infected. He said that there is a .02% chance that this could happen. You know what else was a rare and small percent. Having twins with one placenta, and even more of a rare percent to have boys. We shot that to shit eh? He also mentioned that it could cause a cataract. another concern with the shot is that they don't have a lot of evidence about how it will affect the body 5-10 years down the road, since it is a somewhat new drug. It is a chemotherapy drug. They use it for diabetics, and macular degeneration. One of the nurses that had a preemie had it done 5 yeas ago, and has had very good results with it. So, we chose the shot. Let me tell you, that making a decision like that is so scary. As soon as I hung up the phone, I thought, oh god, what if his eye gets infected, and it's my fault? What if the decision you just made just basically screwed your kid for life? As I sat and pondered that for the next few hours, crying in between cleaning my house and doing laundry, I had to sit down, have a big cry, pray, and talk myself down. I had to stop and say, you know what, there is a chance that this could cause him to be blind, but by not doing anything, he will be blind, hands down. That pulled me out of it. I was still in a shitty mood though all day. My heart breaks for this kid. I just sat on the couch, and cried, and was like wtf? Why is this happening to him? It is so freakin frustrating. It's even worse when everyone keeps saying look at Brady! He looks so great! Then you look at Patrick and think, geez kid, you got the shit end of the stick. Why is it so bad for him? I just want to apologize to him every day and just tell him I am so sorry that he has to go through this. The only blessing is that he won't remember any of it. We, unfortunately will. They said that he did okay with the shot. He did fight during it, which they said is a good sign. It makes me sad to see him always fighting and angry, and I often wonder if he will always be like that. He always seems so moody, not that I can blame him, he is always being hurt. When we saw him tonight, his eyes were watery, and he was holding them shut. We didn't do hands on at all, because we just wanted him to rest. His SPO2 was down to 50, which is not great, and his heart rate was low a few times too. It is probably all from the stress of it. We didn't want to add to it, so we just let him sleep tonight. It was hard not to hold him, and just snuggle with him for a minute, even harder not to cry when I saw his little swollen eyes. He had them shut so tight. He is getting antibiotics in his eye, and he is on iv nutrition. They held his feeds for twelve hours because of the procedure. He might eat at 3am depending how he looks. That means he had another cath. Also because of the surgery, he never made it to progressive, and won't be going anytime in the next day or so. They want to watch him on his oxygen, and make sure he is okay. The side he is on now, is better for him because the nurses only get two babies. Once they get to progressive they can have 4-5 babies. He will not get the attention that he needs there, and he has to be watched right now. They have his spot next to Brady reserved. It will be great when he gets back there, because all the primaries will be in one spot, and there is always one on, which means that it is highly likely that their primaries will have both him and Brady. I don't know how much he weighed because we literally did nothing, just stared at him. Maybe tomorrow we will know more. His primary said that she will call us if she gets anything good tonight.
Another cath :(
I can't open my eyes.
Trying to get some sleep to heal.
Brady
I forgot to mention yesterday that Brady was going to have a test today called a VCUG. Which stands for Voiding Cysto-Urethrogram. A VCUG evaluates a child's bladder size, shape, and capacity, as well as the urethra. The urethra is the small tube that connects the bladder with the outside of the body. This procedure can also determine if a child has reflux — a condition where urine from the bladder goes upward back to the kidneys. I sounded so technical right there didn't I. Thank Google, not me. They put a foley catheter in and inject It with contrast. They do the test on any baby that had a urinary tract infection while there, just as a precaution. before they go home. The final results were not in, but so far it looks good. We did not get rounds tonight, but Craig saw the doctor while walking in between babies. He asked Craig if he had a discharge date yet. Craig said no. He said well maybe this week. I almost passed out. It's funny, I am so excited for him to come home, yet so scared! I mean, who authorized us to have kids, and then bring them home? Is that person insane? I haven't taken care of a baby since my my brother and sister was little. I have no idea what I am doing, haha. No, I have an idea. Thankfully our nurses have taught us very well, and said that we are normal parents. What they mean is, there are a lot of parents there that don't really do a lot of hands on, so when they get discharged, they basically freak out, and don't know what to do. I am hoping that will not be us, because we do all the hands on. They said we are good parents. We try. Brady's big news tonight was that for the first time ever, we tried breastfeeding. For the record, I had a feeling that I would not be a fan, and to my surprise, it wasn't as bad as I thought. Don't get me wrong, I am not going to walk in there tomorrow, and whip out my boobie with excitement. If they forget to ask me, I will not remind them, haha. I was willing to try it because I am still pumping for Patrick. I just realized this may be getting personal, but hey, it is what it is. You are more than welcome to stop reading at anytime, but I know you won't, you are sucked in to deep. Anyway, I have pumping for Patrick because I know the milk is really good for his belly. I know it has a lot of good stuff in it, so I am willing to try it. Again, not a fan of it, but I think we all agree that I will do anything for the health of our children. I hate pumping, more than I can describe, but if the the doctor's say it is going to continue to heal Patrick, and help Brady too, I will do it for as long as they need me to. So, we tried for the first time today, "which was not at all awkward whipping out my boob for a nurse that we have become friends with today", said no one ever. We weighed Brady before, the we weighed him after. he took 15 mls. That is really good for a first time they said. Then he almost finished a whole bottle! After that he fell asleep. I felt slightly bad that he was stealing Patrick's milk, but I was hoping it would help me later on. They said it takes even more energy to breastfeed then it does to take a bottle, so he was tired afterward. He weighed 4 pounds 13 ounces tonight.
Snuggle time before feeding
The weekend's here, whoop whoop
In tuck position, about to get swaddled.
I think that is it from the emotional NICU tonight. Hopefully tomorrow will be a better day for little Patrick, but they said we shouldn't be surprised if he is back on the CPAP, or his eyes are more swollen. We will see how it goes. Wish him luck!
Have a good everyone, and remember to hug your babies!
Thanks for all the prayers today! We appreciate all of them!
Em, Craig, and the boys.
No comments:
Post a Comment