This is my last story for today and I think everyone will be fully updated.
Last Thursday night (April 22) after returning from our disappointing ultrasounds I was changing Dills diaper and found blood coming out of his penis. OMFG was all I could think. I told Lily to grab my phone I was hoping it wasn't to late for our pediatricians after hours clinic, but it was. So off to the ER we went. We were there all night, the Dr wanted to do a catheter. However I know from his rickets experience that they have bags to put on little boys that aren't invasive. So I told them to get one and I would put on myself. That is what we did.
After a few hours he finally peed, they looked at the urine and sure enough he has a UTI. Which I did not know at the time is very uncommon for little boys. (I remember getting UTI's when I would have to many bubble baths, so I figured it was the same for boys...not the case.) The Dr prescribed an antibiotic and told me to follow up with his pediatrician to have some testing started. Tomorrow we go to the pedi to make sure the infection is gone, then he will write the orders for a dye/xray thing. The thought is that he has urinary reflux. (Baby has PUV, Dillion would have VUR, getting all this straight? ugh) It is possible for Dillion to have the same thing as Baby Tres, but to a lesser degree. Hopefully we will find out soon. I am tired...
Thursday, April 29, 2010
Baby Tres...
In January James and I found out that I am pregnant with the one we lovingly call "Baby Tres" being as he is our third child. We planned on him/her having that name until birth since we were not going to find out sex. However at my 19 week anatomy scan my OB found a problem. She said the babies bladder is very distended (large) and honestly she doesn't know what that means. So we were sent to Indianapolis St.Vincent hospital that very same day for another ultrasound. (Mind you everyone who read my last post...my mother died on Tuesday April 20, the ultrasound day is Thursday April 22.)
In Indy they agree that the bladder is very large, about the size of Baby Tres' head. They tell me at that point that he is a he because the problem he has only happens to boys. It is called Posterior Urethral Valve (PUV) Syndrome. A valve that would allow a normal bladder to drain is backwards so all of his urine is backing up to his bladder and kidneys. If it is not stopped his kidneys will burn out and he will need dialysis and eventually a kidney transplant. On top of that after a certain point in pregnancy the amniotic fluid is made up entirely of urine. If the urine is not getting out then there is no amniotic fluid. A baby needs this fluid especially between 20-24weeks to ensure their lungs develop properly.
The Dr wanted to do an amniocentesis that day to check for chromosome abnormalities (that is present in 10% of PUV cases) and also to see what his kidney functions were like. Unfortunately we could not do it that same day because I am on Lovenox (blood thinners) and it would cause a bleeding risk. So we schedule it for the next day. (Insert here a story about Dillion that happens Thursday night...I will get to that in another post.)
Friday we go for the amnio which is actually meant to drain of the babies bladder rather than just a sample of amniotic fluid. It was very painful, much more than the amnio I had with Dillion since they had to hit a specific point on the baby. The Dr did not think she got into the bladder like they were hoping and when the results came back sure enough she was right. They only got amniotic fluid. We were able to test for chromosomes that all came back fine, but could not find out how his kidney's are doing.
The reason for the kidney functions are that there is a fetal surgery that can be done where they put shunts in Baby Tres' bladder to let it drain until birth. This will hopefully save the kidney's and allow enough amniotic fluid for the lungs to properly develop. If the kidney functions are to low then they will not continue to make urine and the shunts are pointless.
Yesterday, Wed April 28th, I went back for a fluid check and another bladder tap. My fluid was lower than last week, but I still have some (20weeks.) Also the procedure was successful, the Dr was able to see Baby Tres' bladder get smaller and knew he had drained it properly. Now we are waiting on the kidney function test. Next Wed I go back for another fluid check. The hope is that the bladder will be full again, meaning that the kidney's are still making urine.
So to recap IF the kidney test comes back with good functions then we will travel to Ohio and have shunts put in Baby Tres' bladder. If they don't then we will not be candidates for the shunts. At that point there may be the option to do weekly amnio infusions, where fake amniotic fluid is put in to help the babies lungs continue to develop. The Dr told me if nothing is done his kidney's WILL fail and I WILL run out of fluid before 24 weeks and his lungs won't develop. With the drastic fluid change in last week and this week I will most likely be out by the next check.
No matter what happens Baby Tres will never be completely healthy. At this point his bladder and ureters have been stretched so much for so long that he will have lifelong issues. But we are trying to limit those issues as much as possible. Please keep us in your thoughts.
In Indy they agree that the bladder is very large, about the size of Baby Tres' head. They tell me at that point that he is a he because the problem he has only happens to boys. It is called Posterior Urethral Valve (PUV) Syndrome. A valve that would allow a normal bladder to drain is backwards so all of his urine is backing up to his bladder and kidneys. If it is not stopped his kidneys will burn out and he will need dialysis and eventually a kidney transplant. On top of that after a certain point in pregnancy the amniotic fluid is made up entirely of urine. If the urine is not getting out then there is no amniotic fluid. A baby needs this fluid especially between 20-24weeks to ensure their lungs develop properly.
The Dr wanted to do an amniocentesis that day to check for chromosome abnormalities (that is present in 10% of PUV cases) and also to see what his kidney functions were like. Unfortunately we could not do it that same day because I am on Lovenox (blood thinners) and it would cause a bleeding risk. So we schedule it for the next day. (Insert here a story about Dillion that happens Thursday night...I will get to that in another post.)
Friday we go for the amnio which is actually meant to drain of the babies bladder rather than just a sample of amniotic fluid. It was very painful, much more than the amnio I had with Dillion since they had to hit a specific point on the baby. The Dr did not think she got into the bladder like they were hoping and when the results came back sure enough she was right. They only got amniotic fluid. We were able to test for chromosomes that all came back fine, but could not find out how his kidney's are doing.
The reason for the kidney functions are that there is a fetal surgery that can be done where they put shunts in Baby Tres' bladder to let it drain until birth. This will hopefully save the kidney's and allow enough amniotic fluid for the lungs to properly develop. If the kidney functions are to low then they will not continue to make urine and the shunts are pointless.
Yesterday, Wed April 28th, I went back for a fluid check and another bladder tap. My fluid was lower than last week, but I still have some (20weeks.) Also the procedure was successful, the Dr was able to see Baby Tres' bladder get smaller and knew he had drained it properly. Now we are waiting on the kidney function test. Next Wed I go back for another fluid check. The hope is that the bladder will be full again, meaning that the kidney's are still making urine.
So to recap IF the kidney test comes back with good functions then we will travel to Ohio and have shunts put in Baby Tres' bladder. If they don't then we will not be candidates for the shunts. At that point there may be the option to do weekly amnio infusions, where fake amniotic fluid is put in to help the babies lungs continue to develop. The Dr told me if nothing is done his kidney's WILL fail and I WILL run out of fluid before 24 weeks and his lungs won't develop. With the drastic fluid change in last week and this week I will most likely be out by the next check.
No matter what happens Baby Tres will never be completely healthy. At this point his bladder and ureters have been stretched so much for so long that he will have lifelong issues. But we are trying to limit those issues as much as possible. Please keep us in your thoughts.
What's new?
I know I haven't updated my blog in forever, but a new friend of mine said it would a nice outlet. So here goes.
About a month ago my mom went into the hospital with a UTI that had gone to her blood along with a blood clot. 2 weeks later they thought she was getting better and were about to send her home when she started having breathing problems. On Sunday April 11 she was moved to the ICU and put on a ventilator by the end of the day. That was the last time she ever spoke to me. First she told me that Baby Tres is a boy and then that she never wanted to be on a vent. However once she couldn't breath she gave in. The next week me, my sister and dad stayed at the hospital most of the time. There were ups and downs. During that week her kidney's failed and she had to be put on dialysis. Also her heart rate dropped a couple times and dad had to make the decision to resuscitate if it totally stopped. That weekend I couldn't take it anymore and went home to be with my family.
Monday things were not looking any better, her chest was still full of fluid (which was what was causing her breathing problems) and she showed no sign of being able to come off the ventilator. The Dr's talked to my dad about putting her on a trach indefinitely. I tried to convince him that is not what she would want. On Tuesday he made the hardest decision of his life...to take her off all the machines and let my mom go. And that is what they did. That night we called all her friends and family. Everyone said their last goodbyes. She was taken off of the dialysis, given a morphine drip and then the ventilator was removed. Mom breathed on her own for quite a while as a few of us sat at her side. I could tell when it was coming to the end because her breathes stopped coming as often. I told her to sleep well and within a few minutes she was gone. I stayed by her side and held her hand for a long while until my dad finally took it away. That was the last time I ever touched my mother. That was April 20th. We buried her April 25th...that was the last time I ever saw my mother. Lily spoke at her funeral, I am very proud of her.
By the way Baby Tres is a boy. But more on that later.
About a month ago my mom went into the hospital with a UTI that had gone to her blood along with a blood clot. 2 weeks later they thought she was getting better and were about to send her home when she started having breathing problems. On Sunday April 11 she was moved to the ICU and put on a ventilator by the end of the day. That was the last time she ever spoke to me. First she told me that Baby Tres is a boy and then that she never wanted to be on a vent. However once she couldn't breath she gave in. The next week me, my sister and dad stayed at the hospital most of the time. There were ups and downs. During that week her kidney's failed and she had to be put on dialysis. Also her heart rate dropped a couple times and dad had to make the decision to resuscitate if it totally stopped. That weekend I couldn't take it anymore and went home to be with my family.
Monday things were not looking any better, her chest was still full of fluid (which was what was causing her breathing problems) and she showed no sign of being able to come off the ventilator. The Dr's talked to my dad about putting her on a trach indefinitely. I tried to convince him that is not what she would want. On Tuesday he made the hardest decision of his life...to take her off all the machines and let my mom go. And that is what they did. That night we called all her friends and family. Everyone said their last goodbyes. She was taken off of the dialysis, given a morphine drip and then the ventilator was removed. Mom breathed on her own for quite a while as a few of us sat at her side. I could tell when it was coming to the end because her breathes stopped coming as often. I told her to sleep well and within a few minutes she was gone. I stayed by her side and held her hand for a long while until my dad finally took it away. That was the last time I ever touched my mother. That was April 20th. We buried her April 25th...that was the last time I ever saw my mother. Lily spoke at her funeral, I am very proud of her.
By the way Baby Tres is a boy. But more on that later.
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