Day 2...

Today started even earlier at 7 am with an MRI. There is something special about being 31 and visiting a children’s hospital… the nurses at a children’s hospital are just a little nicer; somehow I think they smile a little more. They offer you treats and juice every time you do a good job and I was doing my best! Since I was at a kid’s hospital I got movie goggles for the MRI. So into the long tunnel Abel and I went, we got to watch Sleeping Beauty. (One of my all time favorites!) The nurses that did the MRI were very nice and compassionate. Granted being 31 I probably made their job a little easier than usual. And after we were done I got apple juice and crackers!

After the MRI Victor and I had a little time to kill so I got some breakfast and took a little nap; Victor had already had breakfast while I was getting the MRI. He really was a trooper during all these visits. I know Abel is just as much his baby as mine but I have to be there, I have no choice; they need me to see Abel. I know there is no other place that Victor would rather be than there with Abel and me, but I am just saying he was extremely supportive, compassionate and understanding. I mean all these doctor visits were just as draining for him as they were for me. He did a great job taking care of me and Abel. (I am not sure he gets enough credit all the time, so a special shout out to my great husband- YOU’RE GREAT!)

We also had an appointment for an ECHO, this was to check out the baby’s heart in more detail than we had previously done. We had a really good looking doctor but I don’t remember his name… so he came in and said Abel’s heart looked good, it was strong! The right side was a little thicker but that was probably just because it was working so hard. There was also a little fluid around the heart but that was common in babies with keyhole bladders. Nothing really to worry about but the doctor felt like Abel’s heart was good. This is a great sign! Just more proof for all the doctors that our Abel is a fighter that he is strong!

We hung out around the hospital for a while and then we met with Michelle the genetics counselor. She asked the same questions I feel like we had been asked a million times already but we answered them all again. She did not feel that like this was a chromosome issue from all her questions and previous testing and once again we were told there was nothing we could have done differently.  These doctors keep telling us that like it’s a comfort, but it really isn't. I almost wish they could tell me I did something wrong at least then I might know the why or how. At least if they told me I did “this” there would be a place for blame. At least if I knew how or why this happened then I could make sure not to do the same thing again in the future. But it’s not that easy… there is no place for blame, there is no reason why… it just is…

After we talked to Michelle we met Dr. Goldstein, he is a nephrology doctor, a fancy title for kidney doctor. He couldn't make it to the team meeting so he sat down with us before hand. I thought that was really nice that he took the time to meet with us and answer any questions we might have for him specifically. We looked at pictures from the MRI to see the kidneys in more detail than we have before… no real good news here though. There is significant damage to the left kidney, it is still working but there is a lot of damage. The right kidney is starting to show damage as well. Although there is evident damage to the kidneys there is no way to know the extent of the damage until Abel gets here. Dr. Goldstein could pretty much guarantee that Abel would need dialysis the question would just be when. You only need 1 kidney to survive, one of Abel’s was pretty much shot but whether or not the other would function once he was here could be questionable. So it comes down to if Abel’s 1 kidney could last him a couple of years or not, but like I said there was no way to tell right now. This is a big “IF”. If Abel does not have a functioning kidney when he is born then he will have to have dialysis. This is a procedure that we could learn to do from home. Abel would get hooked up to a machine each night for at least 10 hours to clean his system of all the toxins, at least while he is little. The doctor said babies usually slept through it all just fine, it was mom and dad that lost sleep because the machine would alarm and we would have to adjust it usually a couple times a night. They would teach Victor and me how to care for Abel and his special needs. If Abel did not have functioning kidneys he would need a transplant. The only thing is we couldn't even start to think about transplants until Abel was 2. There is a good chance that Victor or I would be able to give Abel a kidney if needed but this would be 2 years down the road.  A transplant usually only last about 14 years at best that means Abel would need another 1 or 2 later on in his life. Kids get pushed to the top of transplant list but what would happen as Abel got older? If you are fortunate enough to get a transplant you also have to take a lot of medicine to keep your body from rejecting the new kidney. Dr. Goldstein was giving us a lot to think about and a lot to process.  He was a really great doctor and full of information. He was patient and helped answer questions we hadn't even thought of. He was honest, we needed that.

After our meeting with Dr. Goldstein it was time for our big “round table discussion”. I was and am still amazed at how wonderful everyone at Cincinnati Children’s Hospital was. Brenda and Bobby went to this meeting with us. We knew it was going to be a lot of information and we welcomed the extra ears and parental support. We seriously sat down to a big round table with everyone; we had a fetal Care Coordinator, Judith Hostiuck; Dr. Foong-Yen, the Surgical Director (he would oversee any surgery); Dr. Van Hook, Maternal-fetal Medicine Director; Dr. Kenny, of Neonatology (he over see’s the after care of special babies); Dr. Reddy, Director of Pediatric Urology (he is the kidney surgeon), plus Mel, Erin, Michelle and a 4^th year intern plus a couple assistance of the doctor’s. I mean we really felt like the red carpet had been rolled out for us, then again this was the most important meeting of our lives as far as Victor and I were concerned. Dr. Foong-Yen spoke first; he talked about the results that all the doctors had found. He then showed us the MRI pictures again and we talked about the damage that already appeared very evident to the kidneys. Then Dr. Van Hook spoke. He told us about a procedure using a shunt that could be inserted into Abel’s bladder to help it drain. This would drain the fluid from the bladder and put it back into the baby’s sack which would increase the amniotic fluid. Dr. Van Hook even got a shunt out and showed us how it works. Most pregnancies require 2-4 shunts because they get clogged, break, baby pulls them out, and things just go wrong. Then Dr. Kenny spoke. The information Dr. Kenny shared with us was hard. I think his information is what started to break me personally. He discussed the after care of Abel. LOTS and LOTS of “what ifs”. How the medical staff would take care of Abel. What would be required of Victor and me. How Abel’s life could and would be affected. How our life as Abel’s parents would change. What we could do, what we could not do, as Abel’s parents we had all the power to make all the decisions and could stop at any point. That is a lot of “power”, it is a heavy weight and it is a lot to decide and take in for anyone. Then Dr. Reddy came in (he was late getting to the meeting) he discussed the surgery of the kidney’s if Abel made it and what would be required of Abel, Victor and I. His information was kind of like the straw on the camel’s back that broke it. His information was great, he was wonderful; they all were. They more they talked the more we listened, the more we asked questions the more they answered. Dr. Reddy drew these pictures of what a normal bladder looks like and what Abel’s looks like. Dr. Reddy at one point made a comment that there was a good change Abel would never be able to be around other kids because of fear of infection. OUCH! It came down to a lot of holes and tubes and what ifs…

What good kidneys and a normal bladder look like

What Abel's kidneys and swollen bladder look like
The little circles on the kidneys are the damage, possible cyst
You can also see the ureters (how the pee travels) have been stretched and damaged along with the collecting system (pelvis)

As I write this my heart breaks… these are just words but it is hard to relive…

Bottom line…

These doctors could only do what they can do; science can only take Abel so far. God is in control. Victor and I did not feel that any of the options the doctors could give us would provide our son with a healthy standard of living. They provided us with a way to keep Abel here on earth with us, but that doesn't mean it would be fair or right for Abel. Abel is God’s son first, God gave him to me and Victor to care for while here on earth and that is what we will do. We could not be selfish. We will not be selfish; as hard as that is at times we can not and will not, that's not what good parents do. This is not about Victor or I; it is about Abel. We had to and have to think about what is best for our baby, for our son, for God's son.

We were ready to get out of Cincinnati… we knew we still had some decisions to make but we were ready to get home. We were at a loss. We were broken.

We headed back to Knoxville...