I am still so amazed and thankful for the doctors that God placed in our lives and the reaction that each one of the had in the care and urgency of our baby. It was good but emotional once again to see him and hear his heartbeat today but so glad that I still have time with our boy. Today I am reminded of this scripture, "Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you and learn of me...for my yoke is easy, and my burden is light." Matthew 11: 28-30
Friday, January 24, 2014
Monday, January 13th, 2014 - High Risk OB Appointment
After a weekend of letting it all settle in and knowing the reality of the situation is it is still so surreal and we are all still in a state of shock. Today I head back downtown to see the high risk OBGYN, not sure why he wanted to see me but we go anyway to find out. We finally get called back and he performs another sonogram on the baby. He checks his bladder and measures it again and finds that it is only 3.8cm. He confirmed that his kidneys were just not functioning as they should. This information only adds more to the reality of what we are facing, but we are still holding on to the prayers and hope of a miracle for our little boy. He goes over with what we have decided to do and says that from here on out that we would continue to be monitored every two weeks.
Day 3 - Friday, January 10, 2014
Today began very early for all of us with a lot on our minds to what the day would bring. We left for TCH at 6:45am and our first appointment would be another sonogram at 8am. After leaving TCH on Wednesday we both had been praying for clarity and strength that whatever the outcome and results, God's will would be clear and not put us in the middle of this - either the results would be favorable (i.e. good urine regeneration and improved urine results) or the opposite. Neither one of us felt strong enough to make a decision when it comes to quality of life for our son - we just needed a clear path from God!
After arriving to TCH we finally get back for the sonogram and they start the scan. Right before they started the genetic counselor we had dealt with on Wednesday came to tell us that his FISH results were back and they were normal. This was a HUGE relief to us because we knew pending what we were about to find to out this would not be a factor for us in continuing an intervention if necessary. They measured his bladder to see if he produced enough urine to possibly do another bladder tap, his bladder measured at 5.1cm (it was 5.8cm Wednesday). They decided that this was sufficient enough and we would go ahead and tap his bladder again to check his urine. One of the other LUTO specialist doctors performed the procedure this time and they were able to pull 35cc of urine from him. This was a bit concerning to us because they pulled 60cc on Wednesday, but they assured us this was normal.
After the procedure we were taken to a conference room to meet with a pediatric urologist. The pediatric urologist discussed with us about how a surgery would be performed to help clear the obstruction after the baby came to term and possible different ways this would be taken care of. He would only perform this surgery once the baby was stable and there were ways that we would be dealing with this until the surgery happened. Again, this was information that would be necessary down the road and we were still collecting information about the condition our little boy. While the urologist's perspective was important, our minds continued to go back to our son's kidneys. This organ function is imperative to the growth / term of his lungs and development.
After lunch we head back to wait to meet with the staff. It is so difficult to concentrate on anything at this point but this article kept coming across my Facebook page and so while we waited I read it. It really struck me and I think it was a reminder from God to me that He never left us and He is there through all of this. Here is the article: http://lemmonythings.com/2014/01/05/god-will-give-you-more-than-you-can-handle-i-guarantee-it/
Finally we met back up with the staff to discuss the urine analysis from the bladder tap that was performed earlier that morning. In the conference room with us was three doctors (the director of OB for the hospital, the main specialist we had been dealing with mostly all week, and the another specialist), two residents, and our clinical coordinator. Up to this point we had both been anxiously awaiting the news we were about to receive, not truly prepared for it all. As they all come in and sit I get a sinking feeling that the news we were about to get was not what we wanted to hear. Our main doctor started off by stating that they urine analysis came back but the results unfortunately were similar to Wednesday therefore no intervention could be done. Our hearts were shattered. We were both in complete shock with the information we just received and couldn't believe what we were being told. Both the urine quality and quantity were inadequate to develop the lungs and sustain life outside of me. The pain is indescribable - hearing this and feeling him move in me at the same time. It's tough understanding and processing God's will in all of this.
They proceeded to tell us they were so sorry and that there were options for us to take from here (obviously we are hearing little past the news they just communicated). The three options that we were given were D&E (dilation and evacuation), preterm labor, or carry till he passes or to term. These were all options that we had already discussed prior to knowing these results, but we could not process this.
Please note, it's extremely difficult thanking the staff and doctors of TCH with this news just communicated. However, they were nothing less than exceptional and sitting there saying "Thank you" with tears flowing down from both of us is very difficult. They truly were outstanding in all aspects, including the emotional comfort through the roller coaster of hell.
More to come on a Mother's and Father's perspective of this journey...
Day 2 - Wednesday, January 8, 2014
Our day begins at 9am at TCH with a visit to a genetic counselor to discuss some of the tests that would be done on our little one and to discuss possibility of us having genetic screening also, we opted out of this at this time as he is the priority (not us through genetic screening). The DNA testing that they would be doing on our little man was a Chromosomal Microarray Analysis (CMA), kyrotype, and FISH. These are all tests that would check for other abnormalities that he might have in conjunction with his LUTO condition. The results from these tests would play a large role in how any intervention would proceed.
Shortly after our meeting we went back to a sonogram room where I would have two procedures done similar to an amniocentesis. The two procedures that were being preformed are a cord blood draw for the DNA testing and a bladder tap. They bladder tap was to remove urine from his bladder to check different levels to see if his kidneys were functioning. The other part of this that they will be looking for on Friday is to see if he bladder fills back to what it was before they tapped it. They measured his bladder and it was 5.8cm prior to the tap and they removed 60cc of urine. These tests were very emotional for the both of us and our hope is that we will get better clarity of what is really going on with our little baby.
Right before we left for lunch we spoke with a pediatric nephrologist (kidney specialist) who we would be working with if our little boy comes to full term. He went over all the details and expectations that we should have during this time. Our first question for him was what his thoughts were about the severity of our son's condition. He said that he did look at all the sonograms pictures prior to meeting with us and he felt that our case was severe. He also stated that he was not a fetal doctor and it was only from what he could see based on the images that he is given, nothing could really be determined for certain until the baby arrived. He told us that our case would be challenging and that we could expect our lives to be changed. He told us based on this information that we should expect that he would be in the hospital for the first eight to ten months. When he said this to us I think both of us thought of our other son we had at home, I think I might have even said "WOW" out loud. As a mom of one already I was struggling with the thought of having our second child in the hospital for that length of time and how I would balance it without allowing our oldest son to feel like mommy forgot about him or only cared about his baby brother more. All the emotions came rushing back once again but we were holding it together. We also discussed that once he became stable that he would be put on dialysis and would remain on dialysis till a kidney transplant happened around the age of two to four. He told us that a kidney transplant would last approximately ten years and that after that he would have to go back on dialysis or have another transplant. We do know that his little kidneys are damaged but to what extent we really do not know (this is what the bladder tap was to help identify - both the quality and quantity of the urine). We also asked him what the mortality rate of babies with this condition and he said that all depends on how stable that baby was after birth and how developed his lungs were. He said that if his lung development was good that we could expect a 25% to 50% mortality rate, if his lungs were not developed and he went into pulmonary hypertension we could expect 100% mortality rate. Once again my heart sinks more. All of this information from this doctor was overwhelming and another hard pill to swallow. At this point we are not even close to talking about these steps because we don't know the condition of him and our steps that we will take to get him to term, however all of this information was very good to have and gave us an idea of what we would need to expect down the road.
After lunch we head back to another room to have an echo of the baby's heart to find out about the information we received early in regards to the fluid around it and to see if there is anything else going on. This scan took an hour and fifteen minutes and they took over 140 pictures of his little heart. They did confirm that his right side of his heart had fluid around it and that both ventricles were thick, this is due to the kidneys not properly functioning as they should and putting more pressure on the heart. They did say that his heart looked good and did not appear to have any other issues, this was a huge relief.
At the end of the end of the day we reconvened with the staff to review the urine analysis and to discuss the options from this point forward. The numbers were better than they had expected (a good sign), but they indicated some kidney failure. The doctors were mainly concerned that the bladder was not as full as they normally see in LUTO fetal patients. So our hope for Friday is that his bladder would fill back to or close to 5.8cm so that another bladder tap could be performed.
Pending this there would be a couple of different routes we would take. If they are able to perform another tap on Friday, we would compare the results to today's results and
1) if the results come back and the analysis is better then we would proceed to putting in a shunt. The shunt is a surgery and does have some higher risks for me as a mama but would help our little boy's bladder to drain his urine into the sack to create amniotic fluid and to help with lung development. If this is a route we can take, the surgery would be performed the following week.
2) if the results come back and the analysis is the same or worse then no intervention can be done for our little baby.
Also, the FISH DNA results will come back on Friday and that would also tell us what we can do. If those results show any negative outcomes we also will not be able to provide an intervention for our baby. The reason for this is that there could be another cause to his condition and it would be too much risk for us to proceed if that were the case.
We left this day feeling like we had gained more information than we ever expected to have, yet this emotional roller coaster of hell has just begun and is far from over. We would do anything for our son, but as a parent going through this we feel so helpless as well. We are still processing everything and praying for clarity and that we as parents to this very little baby make the right decisions for him and for our family.
Shortly after our meeting we went back to a sonogram room where I would have two procedures done similar to an amniocentesis. The two procedures that were being preformed are a cord blood draw for the DNA testing and a bladder tap. They bladder tap was to remove urine from his bladder to check different levels to see if his kidneys were functioning. The other part of this that they will be looking for on Friday is to see if he bladder fills back to what it was before they tapped it. They measured his bladder and it was 5.8cm prior to the tap and they removed 60cc of urine. These tests were very emotional for the both of us and our hope is that we will get better clarity of what is really going on with our little baby.
Right before we left for lunch we spoke with a pediatric nephrologist (kidney specialist) who we would be working with if our little boy comes to full term. He went over all the details and expectations that we should have during this time. Our first question for him was what his thoughts were about the severity of our son's condition. He said that he did look at all the sonograms pictures prior to meeting with us and he felt that our case was severe. He also stated that he was not a fetal doctor and it was only from what he could see based on the images that he is given, nothing could really be determined for certain until the baby arrived. He told us that our case would be challenging and that we could expect our lives to be changed. He told us based on this information that we should expect that he would be in the hospital for the first eight to ten months. When he said this to us I think both of us thought of our other son we had at home, I think I might have even said "WOW" out loud. As a mom of one already I was struggling with the thought of having our second child in the hospital for that length of time and how I would balance it without allowing our oldest son to feel like mommy forgot about him or only cared about his baby brother more. All the emotions came rushing back once again but we were holding it together. We also discussed that once he became stable that he would be put on dialysis and would remain on dialysis till a kidney transplant happened around the age of two to four. He told us that a kidney transplant would last approximately ten years and that after that he would have to go back on dialysis or have another transplant. We do know that his little kidneys are damaged but to what extent we really do not know (this is what the bladder tap was to help identify - both the quality and quantity of the urine). We also asked him what the mortality rate of babies with this condition and he said that all depends on how stable that baby was after birth and how developed his lungs were. He said that if his lung development was good that we could expect a 25% to 50% mortality rate, if his lungs were not developed and he went into pulmonary hypertension we could expect 100% mortality rate. Once again my heart sinks more. All of this information from this doctor was overwhelming and another hard pill to swallow. At this point we are not even close to talking about these steps because we don't know the condition of him and our steps that we will take to get him to term, however all of this information was very good to have and gave us an idea of what we would need to expect down the road.
After lunch we head back to another room to have an echo of the baby's heart to find out about the information we received early in regards to the fluid around it and to see if there is anything else going on. This scan took an hour and fifteen minutes and they took over 140 pictures of his little heart. They did confirm that his right side of his heart had fluid around it and that both ventricles were thick, this is due to the kidneys not properly functioning as they should and putting more pressure on the heart. They did say that his heart looked good and did not appear to have any other issues, this was a huge relief.
At the end of the end of the day we reconvened with the staff to review the urine analysis and to discuss the options from this point forward. The numbers were better than they had expected (a good sign), but they indicated some kidney failure. The doctors were mainly concerned that the bladder was not as full as they normally see in LUTO fetal patients. So our hope for Friday is that his bladder would fill back to or close to 5.8cm so that another bladder tap could be performed.
Pending this there would be a couple of different routes we would take. If they are able to perform another tap on Friday, we would compare the results to today's results and
1) if the results come back and the analysis is better then we would proceed to putting in a shunt. The shunt is a surgery and does have some higher risks for me as a mama but would help our little boy's bladder to drain his urine into the sack to create amniotic fluid and to help with lung development. If this is a route we can take, the surgery would be performed the following week.
2) if the results come back and the analysis is the same or worse then no intervention can be done for our little baby.
Also, the FISH DNA results will come back on Friday and that would also tell us what we can do. If those results show any negative outcomes we also will not be able to provide an intervention for our baby. The reason for this is that there could be another cause to his condition and it would be too much risk for us to proceed if that were the case.
We left this day feeling like we had gained more information than we ever expected to have, yet this emotional roller coaster of hell has just begun and is far from over. We would do anything for our son, but as a parent going through this we feel so helpless as well. We are still processing everything and praying for clarity and that we as parents to this very little baby make the right decisions for him and for our family.
Day 1 - Tuesday, January 7, 2014
Today started as any normal day...wake up, get ready, eat breakfast, get little man off to school, etc. Today was also a special, a day that we would go to check on Baby Nelson and confirm that he was in fact a BOY. We were excited as this was going to be the last time that we saw him before his big arrival into this world. However, we had no idea what this day would bring to us.
We arrive to our 20 week appointment at 9:30am and we go back for the sonogram. The sonographer was doing her usual check and tells us she is having a hard time finding the little boy part because his legs were together, bummer. His heartbeat was strong and everything seemed normal to us. She prints some pictures off and as she hands some to us she tears one off and says wait here your doctor might want to take a look. As she left the room we looked at each other and knew that something was not right. When she returned to the room she said that the nurse would take us to another room and the doctor would speak with us in there. At this point I was getting really nervous and my anxiety level was rising quickly. The nurse takes us back and we wait patiently for the doctor to arrive. Finally the doctor comes in and she sits down and says that baby Nelson's kidneys were not normal and that I had low amniotic fluid (i.e. one of the main reasons we later find out why I'm not as big as I was with my last pregnancy). She tells us that she has contacted a doctor that is a high risk OBGYN and we are to leave immediately and go to his office, he was expecting us. She said she was so sorry, hang in there, and we would get through this. At this point I am in tears and just in complete shock. I can't explain the feelings (overwhelmed, desperate, hopeful, etc.) - both of our minds are racing. The doctor said that she would have someone help us leave through the back door and we leave without knowing truly what was going on with our son.
We arrive at the high risk OBGYN and wait which seems like forever. Finally we are called back and the doctor performs the second sonogram of the day. He explains to us that Baby Nelson has a blockage which is not allowing him to pee in the womb, which is causing me to have low amniotic fluid. To help you understand this better, a mother will create amniotic fluid for her baby up to 16 weeks of pregnancy but at 16 weeks the baby will take over this function and create this for himself / herself through kidney / urination functions. From this point the baby will ingest / breathe amniotic fluid, process this by urinating, and then continue this cycle to create his / her amniotic fluid. The doctor tells us that our son is having kidney failure and that our case is serious and that he is recommending us to go to Texas Children's Hospital to a doctor that specializes in this condition. He called the doctor to get us seen that day, so off we go again with more information of what is going on, but not knowing what options are available to us.
We arrive at TCH about 1:45 and meet with the clinical counselor that says they will be doing the third sonogram but it wouldn't be till 4 pm that day. Feeling helpless but hopeful (because we know we're in the right place now), we try to go grab a bite to eat even though our minds are not on food at all. Eating did not sound good at this point but we hadn't had anything all day. We return for the sono and a ton of pictures of our boy are taken. The sonographer asks us if we know what the sex of the baby is and we tell her that it is a little boy but were unable to find his little boy part this morning, she is able to find it for us and gives us a picture. During the sono she asks us if our previous sonographers explained to us that our little boy's right foot is a club foot or that there was fluid around his heart, of course we did not know this and this becomes more information to us that I don't think either one of us were prepared for. As the sono is happening people are trickling in the room one by one, you would have been amazed with all the people that were in the room with us during this scan. We had two doctors, several nurses, residents, clinical coordinator, and of course the sonographer. After the sono we were escorted to a conference room were we met with the team and there they explained what was going on with our little boy.
Baby Nelson's condition / diagnosis is LUTO (lower urinary track obstruction). The doctor explained to us that Baby Nelson's left kidney appeared to not be functioning and that his right kidney was dilated (indicating some damage but the extent was unknown). We were also told his bladder did not appear to be as full as most LUTO babies they have seen before. Baby Nelson was not able to urinate therefore causing low amniotic fluid which was critical due to lung develop between 20 to 28 weeks during pregnancy. The club foot and fluid around his heart were both causes of the LUTO with low amniotic fluid (he's not as protected in the womb) and the fluid around the heart was due to back-pressure in our son's body and the heart having to work harder. The main doctor that we would be dealing with told us that we would need to be seen the following day for several appointments / procedures. We would need to see a genetic counselor, a pediatric nephrologist (kidney doctor), a pediatric urologist, have an echo of the baby's heart, and I would have a procedure where they would do a bladder tap to remove urine from the baby and also retrieve cord blood from the baby. LUTO is a condition that is extremely rare, happens in 1 out of 5,000 to 7,000 babies, mostly boys. Also it has nothing to do with ethnicity, environment, or that we did fertility, we were actually their first fertility patient. With all the information that we received we were so overwhelmed and emotionally exhausted. We left TCH at 6:30pm with a lot more information and many questions answered, but even more questions unanswered related to the long-term health of our baby.
For more information about LUTO go to http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/lower-urinary-tract-obstruction-luto.html
We arrive to our 20 week appointment at 9:30am and we go back for the sonogram. The sonographer was doing her usual check and tells us she is having a hard time finding the little boy part because his legs were together, bummer. His heartbeat was strong and everything seemed normal to us. She prints some pictures off and as she hands some to us she tears one off and says wait here your doctor might want to take a look. As she left the room we looked at each other and knew that something was not right. When she returned to the room she said that the nurse would take us to another room and the doctor would speak with us in there. At this point I was getting really nervous and my anxiety level was rising quickly. The nurse takes us back and we wait patiently for the doctor to arrive. Finally the doctor comes in and she sits down and says that baby Nelson's kidneys were not normal and that I had low amniotic fluid (i.e. one of the main reasons we later find out why I'm not as big as I was with my last pregnancy). She tells us that she has contacted a doctor that is a high risk OBGYN and we are to leave immediately and go to his office, he was expecting us. She said she was so sorry, hang in there, and we would get through this. At this point I am in tears and just in complete shock. I can't explain the feelings (overwhelmed, desperate, hopeful, etc.) - both of our minds are racing. The doctor said that she would have someone help us leave through the back door and we leave without knowing truly what was going on with our son.
We arrive at the high risk OBGYN and wait which seems like forever. Finally we are called back and the doctor performs the second sonogram of the day. He explains to us that Baby Nelson has a blockage which is not allowing him to pee in the womb, which is causing me to have low amniotic fluid. To help you understand this better, a mother will create amniotic fluid for her baby up to 16 weeks of pregnancy but at 16 weeks the baby will take over this function and create this for himself / herself through kidney / urination functions. From this point the baby will ingest / breathe amniotic fluid, process this by urinating, and then continue this cycle to create his / her amniotic fluid. The doctor tells us that our son is having kidney failure and that our case is serious and that he is recommending us to go to Texas Children's Hospital to a doctor that specializes in this condition. He called the doctor to get us seen that day, so off we go again with more information of what is going on, but not knowing what options are available to us.
We arrive at TCH about 1:45 and meet with the clinical counselor that says they will be doing the third sonogram but it wouldn't be till 4 pm that day. Feeling helpless but hopeful (because we know we're in the right place now), we try to go grab a bite to eat even though our minds are not on food at all. Eating did not sound good at this point but we hadn't had anything all day. We return for the sono and a ton of pictures of our boy are taken. The sonographer asks us if we know what the sex of the baby is and we tell her that it is a little boy but were unable to find his little boy part this morning, she is able to find it for us and gives us a picture. During the sono she asks us if our previous sonographers explained to us that our little boy's right foot is a club foot or that there was fluid around his heart, of course we did not know this and this becomes more information to us that I don't think either one of us were prepared for. As the sono is happening people are trickling in the room one by one, you would have been amazed with all the people that were in the room with us during this scan. We had two doctors, several nurses, residents, clinical coordinator, and of course the sonographer. After the sono we were escorted to a conference room were we met with the team and there they explained what was going on with our little boy.
Baby Nelson's condition / diagnosis is LUTO (lower urinary track obstruction). The doctor explained to us that Baby Nelson's left kidney appeared to not be functioning and that his right kidney was dilated (indicating some damage but the extent was unknown). We were also told his bladder did not appear to be as full as most LUTO babies they have seen before. Baby Nelson was not able to urinate therefore causing low amniotic fluid which was critical due to lung develop between 20 to 28 weeks during pregnancy. The club foot and fluid around his heart were both causes of the LUTO with low amniotic fluid (he's not as protected in the womb) and the fluid around the heart was due to back-pressure in our son's body and the heart having to work harder. The main doctor that we would be dealing with told us that we would need to be seen the following day for several appointments / procedures. We would need to see a genetic counselor, a pediatric nephrologist (kidney doctor), a pediatric urologist, have an echo of the baby's heart, and I would have a procedure where they would do a bladder tap to remove urine from the baby and also retrieve cord blood from the baby. LUTO is a condition that is extremely rare, happens in 1 out of 5,000 to 7,000 babies, mostly boys. Also it has nothing to do with ethnicity, environment, or that we did fertility, we were actually their first fertility patient. With all the information that we received we were so overwhelmed and emotionally exhausted. We left TCH at 6:30pm with a lot more information and many questions answered, but even more questions unanswered related to the long-term health of our baby.
For more information about LUTO go to http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/lower-urinary-tract-obstruction-luto.html
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