So everything seemed to be going great today. Like my previous post said, Merrick has been doing better and better with his blood sugar and breastfeeding. Oh, and he got his catheter out. Well, the pediatric urologist called us this evening to let us know that he just got out of surgery and that he was going to stop by and look at Merrick's scans today and then come visitin with us. When he came in, he let us know that yes, Merrick has Posterior Urethryl Valves as well as Reflux. So we thought okay, this isn't too bad. It's not something that is hard to fix. Well then he drew a diagram of what is really going on with Merrick's bladder and ureturs. His bladder is bigger than normal b/c of all the fluid and he has an extra "sac" that extends from the side b/c of the strain (think of an over stretched balloon and how if you squeeze it, another bubble comes out). And his right uretur is dialated as well as the left...but the left is the size of the bladder itself. Plus there is a blockage at the base of the bladder and urethra. So b/c of all of these things, Merrick can't pee very well and all the urine is getting backed up and causing the inflamation in the bladder, which in turn, causes the ureturs to reflux. And he also said that his kidneys have some damage, but he doesn't know to what degree right now. So the game plan is to have Merrick transferred over to the children's hospital either this weekend or Monday and they are going to stick a tiny scope up his urethra and cut the blockage out (but they have to wait until he's a couple of more weeks old). Hopefully that will allow his bladder to drain. If they a) can't get the scope up his urethra, or B) it doesn't work, they are going to have to go in and do a couple of other things, that include bigger surgeries and basically cutting and attaching part of his bladder to his tummy so it will drain into his diaper. This is just a temporary thing and will be fixed w/in 6 months to a year. And another thing they may have to do is go in surgically and cut a hole in his ureturs and attach them to his tummy and he will have to have a colastomy bag for six months to a year. No matter what, he is going to have to have surgery, we just don't know how invasive it will be. But until then, they had to put his catheter back in, poor baby.
Also, he has a sacral dimple on his butt that goes extremely deep, so deep that they couldn't see the end of it during the sonogram they did on it today. So a neonatal surgeon is coming tomorrow to look at it and see if we need to have an MRI and possibly surgery on that as well, b/c it looks like it's attached to the spinal colum.
Oh, and we found out that we will be in the hospital for at least another 2-4 weeks, most likely 4 weeks.
This has been a very stressful evening. We told the doctor about DF going out of town for work on the 11th and asked about accomedations for rooming over at the children's hospital, since we have no car and I am breastfeeding Merrick. He says that they to have rooming for parents there are the hospital and we will work everything out.
I am calling the social worker tomorrow to talk to her about all of this, b/c I broke down yet again tonight as did DF. It's so hard to see your son laying there with all of these wires and knowing that he is going to have to go through all of this stuff. I am REALLy worried that I will get PPD and my milk flow will stop due to stress, especially once DF leaves. He told me tonight that he didn't want to go and that he was going to walk off this gig so he could be with us. I told him he had to go, b/c that is how we are paying bills and if he didn't go work, then we would loose our apartment and we would loose everything. I am going to call my mother tomorrow and let her know what is going on and see if maybe there is a way for her to come down and stay with me, as well as my SIL. I need my family right now and it's very difficult to have them so far away. We are very grateful to have wonderful friends here in Austin with us, but no one can commit the time to staying with me.
We are trying to take it one day at a time, and if we have to, one hour at a time...but it's difficult. DF went into the chapel tonight and started yelling and throwing chairs and stuff. He's agnostic, but is really starting to doubt even that. He used to be very spiritual, but has lost a lot of his faith over the past couple of years. I am spiritual, and am trying to be strong, but it's hard.
(They need to make a face that is bawling with face in hands....that's how I feel now!!!)
Also, he has a sacral dimple on his butt that goes extremely deep, so deep that they couldn't see the end of it during the sonogram they did on it today. So a neonatal surgeon is coming tomorrow to look at it and see if we need to have an MRI and possibly surgery on that as well, b/c it looks like it's attached to the spinal colum.
Oh, and we found out that we will be in the hospital for at least another 2-4 weeks, most likely 4 weeks.
This has been a very stressful evening. We told the doctor about DF going out of town for work on the 11th and asked about accomedations for rooming over at the children's hospital, since we have no car and I am breastfeeding Merrick. He says that they to have rooming for parents there are the hospital and we will work everything out.
I am calling the social worker tomorrow to talk to her about all of this, b/c I broke down yet again tonight as did DF. It's so hard to see your son laying there with all of these wires and knowing that he is going to have to go through all of this stuff. I am REALLy worried that I will get PPD and my milk flow will stop due to stress, especially once DF leaves. He told me tonight that he didn't want to go and that he was going to walk off this gig so he could be with us. I told him he had to go, b/c that is how we are paying bills and if he didn't go work, then we would loose our apartment and we would loose everything. I am going to call my mother tomorrow and let her know what is going on and see if maybe there is a way for her to come down and stay with me, as well as my SIL. I need my family right now and it's very difficult to have them so far away. We are very grateful to have wonderful friends here in Austin with us, but no one can commit the time to staying with me.
We are trying to take it one day at a time, and if we have to, one hour at a time...but it's difficult. DF went into the chapel tonight and started yelling and throwing chairs and stuff. He's agnostic, but is really starting to doubt even that. He used to be very spiritual, but has lost a lot of his faith over the past couple of years. I am spiritual, and am trying to be strong, but it's hard.
(They need to make a face that is bawling with face in hands....that's how I feel now!!!)
I totally agree talking to a social worker is a GOOD idea. I'm a social worker, and the SW's I went to school with who work in the hospital are pretty awesome. If you don't feel like you connect with the first one for whatever reason, look for another.
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