We actually had a lot of time with the boys today. We went and saw them twice today! They had a busy day today. They both had the second part of their eye exam done. They call it a RetCam, which I think is basically a retinal camera. It takes pictures of their eyes, and then the doctor interprets the photos. We know that they have underdeveloped eyes already. I'm hoping that there is nothing more. One of the big problems that they can develop is ROP, which stands for Retinopathy of prematurity, which is an abnormal growth of blood vessels in the eye. I think this is one of the issues that can occur from being on high oxygen all the time, but I can't back that up 100 %. Thankfully they have been on low oxygen for most of the time that they have been there. On occasion they have to be turned up, but usually they stabilize themselves and can be turned down. Other issues that can happen are anything from poor vision, to blindness. Yea, cause we need to deal with that too, right? Again, let's cross our fingers. The doctor last week said that he didn't see anything, so let's hope that nothing has changed in a a week. The nurses told us that they were not happy with this test. Patrick's nurse said she looked into his bed, and he was totally giving her the stink eye. He was not pleased. Brady was unhappy with the situation too. Let's see what else, what else. Nope can't think of anything extra, so let's begin. We will start with Patrick today.
Patrick
Patrick is looking yellow my friends. He was started on Actigall today. This medicine will help get the Billirubin out of his body, which will help the color. His Phenobarbital has been discontinued. He is on his full feeds at 5 ml/hr. he has eaten me out of house and booby. I mean home, I mean home. I have to start pumping for real now! He received formula the other day for the first time and he seemed to do well with it. I just have to make sure that I drink a lot of water, and pump more often to keep up with his growing little body. I forgot to mention yesterday that he has a little fissure. What is that? Our little man has his first hemorrhoid. Someone get this kid some Preparation H and fast! His weight tonight was 1240 grams, I have no idea what that weight it. We forgot to switch it over into pounds. He had some blood gasses taken this morning, and they were very good. They are going to turn down his vent tonight for an hour, and take another one. If it is good, they can turn down his vent some more. He will be at 25, but he needs to do well at 15 before they switch him to a CPAP. what stinks is that he still has a positive culture on his luki. The doctor today said that is in his lungs with the tube. We asked if it was possible for him to to be switched to the CPAP while he still had an infection, and he said yes. We want this, because if the tube comes out, the infection will go away, in theory. Take out the infected tube, get rid of the funk. That is why it is extra important that he does well on his lower vent settings.
Brady
Brady was moved to a new bed today. He is no longer in a "Giraffe," He is in a a Caleo. There are a few differences. Some good, some bad. The bad being that the top doesn't go up, so it is harder to get him in and out, and I would imagine hands on time. It is cool because it rocks back and forth so you can tilt his bed. He is doing well, and had some snuggle time with dad today. He is taking his feeds well. Craig is sleeping so I can't ask him how much he weighed. That is two nights in a row that he fell asleep during blog time. For shame! I should wake him up, but I am a nice wife, and will not. He didn't have any bradycardia episodes today that I know of, but he does "dsat" sometimes still. Otherwise, he is staying stable, and I am good with that.
So, last but not least, is the scary news of the night. Both primary nurses are both on vacation this week. GASP! What?! I know! AND, AND! One of the other nurses we like took two days off this weekend too! I mean, what kind of place puts us in this position! Geez! Do they not know that it is crucial to Patrick's health that she is there! Ugg, trust me, I am just as upset as all of you! To make sure things go well this week,, and that mommy doesn't get all "eeeeeekkk," we had a small group meeting. Patrick's nurse told him last night what was expected of him this week, and where she expected him to be when she arrives back. Brady's nurse also told him to behave for the other nurses, and no shenanigans. Sigh, It will be okay, but some of you may need to talk me down this week. Deep, relaxing breaths, deep, relaxing breaths...serenity now... they will be okay.Seriously though, whoever does the schedule is in big trouble, haha!
Alright kids, have a great night!
Em and all the boys!
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