Overall, Mason's condition has not changed much over the past few days. The swelling in his body has gone down quite a bit, and that is about it. The next hurdle for Mason is to get off of the heart-lung bypass (ECMO). In order to do that he must start by getting closer to his birth weight by continuing to lose the fluids built up in his system. After that he will go through several trials where the doctors increase his respirator volume and see how he does off of ECO on a short, temporary basis. Once his body can sustain life without ECMO for a cerain amount of time on the trials then he will be taken off ECMO for good.
There was a bit of excitement today. First he lost some blood when the syringe removing blood from the ECMO circuit (to have blood tests run) came off of the circuit causing him to lose quite a bit of blood. His heartrate jumped quite a bit and his blood pressure went down as well. However, after he received more blood he returned to his normal state within a few hours.
The other excitement today was that the ECMO circuit started to get some blood clots in it today. This is pretty normal and is expected to happen about once a week. To remedy that situation they had to take him off of his ECMO machine and hook him up to a new machine. The medical staff has this procedure down to a science, and he was only off of ECMO for less than two minutes. He reacted well, however changing systems does introduce a lot of new fluids into his system so his swelling will increase for the next day or so until his body can process the fluids.
Wednesday, May 30, 2007
Tuesday, May 29, 2007
An Update on Mason's progress
When we saw Mason today, he was a lot less bloated. A lot of the fluid built up in his body (added due to the issues with starting him on ECMO) was being urinated out. He was urinating so much in fact, that he also urinated out his cathetar. The doctors were pleased with his progress and decided that it was not necessary to replace it as long as he kept up the good work.
Also, Mason started making some movement in the last few days. He was so heavily sedated as part of the surgeries that he did not move at all for the first few days. However, today was acting like an All-Star. He was wiggling his toes, fingers, feet, hands, and even moving his legs a bit. It looks like his feet are as ticklish as both of his parents.
In addition, Mason was moving his mouth and trying to open his eyes. It looked like he may be trying to smile and suck on his respirator tube, although his tongue is still very swolen so it is hard to know for sure. The nurses saw him open one of his eyes while they were turning him this morning, although his eyes are also so swolen that it is nearly impossible for him to open his eyes other than when he is being moved. However he does flinch his eyelids and move his eyebrows quite a bit.
We also received good news yesterday that an ultrasound of his brain shows that there is no bleeding right now. Babies on ECMO have to have their blood thinned out to fit into the machines. A side effect of this is bleeding into the brain. So far he has been able to fend that off.
The doctors did take him off of two of his blood pressure medicines today. His heart and blood pressure responsed well.
One thing I wanted to make sure everyone knew about the upcoming hours, days, weeks, and months. The doctors have forwarned us that babies with CDH are very sick for a long time. There are a lot of ups and downs during this time, and we are still not out of the woods. The last two days have shown a lot of great progress for Mason. We thank God for this, and pray everyday that he gets better and better. However, we also know that everyday will not always be better than the previous one before it. We just ask that everyone keep Mason in your thoughts and prayers as all of those prayers seem to be working at the moment.
Also, Mason started making some movement in the last few days. He was so heavily sedated as part of the surgeries that he did not move at all for the first few days. However, today was acting like an All-Star. He was wiggling his toes, fingers, feet, hands, and even moving his legs a bit. It looks like his feet are as ticklish as both of his parents.
In addition, Mason was moving his mouth and trying to open his eyes. It looked like he may be trying to smile and suck on his respirator tube, although his tongue is still very swolen so it is hard to know for sure. The nurses saw him open one of his eyes while they were turning him this morning, although his eyes are also so swolen that it is nearly impossible for him to open his eyes other than when he is being moved. However he does flinch his eyelids and move his eyebrows quite a bit.
We also received good news yesterday that an ultrasound of his brain shows that there is no bleeding right now. Babies on ECMO have to have their blood thinned out to fit into the machines. A side effect of this is bleeding into the brain. So far he has been able to fend that off.
The doctors did take him off of two of his blood pressure medicines today. His heart and blood pressure responsed well.
One thing I wanted to make sure everyone knew about the upcoming hours, days, weeks, and months. The doctors have forwarned us that babies with CDH are very sick for a long time. There are a lot of ups and downs during this time, and we are still not out of the woods. The last two days have shown a lot of great progress for Mason. We thank God for this, and pray everyday that he gets better and better. However, we also know that everyday will not always be better than the previous one before it. We just ask that everyone keep Mason in your thoughts and prayers as all of those prayers seem to be working at the moment.
Monday, May 28, 2007
Mason's first 24 hours
As one nurse told us "Mason set the record for most excitement in his first 24 hours after he was born."
Immediately after he was born, the doctors rushed him into another room to start the care for him. Now that he was "on his own" he needed to breathe on his own, however the CDH condition that he had would not allow him to do so sufficiently. Once they got him in the room and started working on him, I was allowed to come into the room with him while the c-section doctors finished finding the balloon's inside of Rosie. There were about 10-12 doctors working on Mason. As we expected, the doctors were not able to maintain his vital signs with the use of a ventalator. After a short time (not sure how long because everything was happening so fast, but probably about 15 minutes), the doctors took him down the hall to start the surgical procedure to put him on ECMO, the heart & lung bypass.
I went check on Rosie and let her know what was going on, and then I followed Mason into the Neonatal Intensive Care Unit (NICU). In that room, I counted 22 different people - surgeons, doctors, nurses, etc. - although there may have been more because everyone was moving around quite a bit. The team was able to start Mason on the ECMO machine within about an hour or so, with a few issues which later turned out to be more significant. I have never seen so many people work together in harmony to do anything, let alone perform a complex surgery on a baby.
Once on ECMO for a few hours, it was evident that one of the cathetars used to insert the blood back into Mason's heart was not inserted all the way. Because his was so little, and his right sided CDH condition made his arteries and veins follow some unusual patterns, the cathetar was not able to reach the heart. In order to make ECMO work for Mason, a lot of extra fluid had to be added into the circuit which was causing him to bloat very quickly. The solution was to perform the CDH repair , and try to push the cathetar in the rest of the way while they were in there. Becuase his arteries and veins were so small, the also had to add a couple of additional cathetars (to help measure vital signs and to draw blood samples) as part of this procedure. As a back up plan the doctors would have to open up his chest to put the cathetar directly into his heart.
The CDH repair went well as did the placement of the additional cathetars, however the ECMO cathetar was not able to be pushed in. By this time is was 4:00am Saturday morning. The surgeons went to get some sleep and call in a pediatric cardiac surgeon to perform the backup plan surgery.
The back up plan went off well. Finally, at about 10:30am Saturday morning, Mason finished "the most excitement in his first 24 hours after he was born." Because he had a chest operation, he was moved from the NICU to the PICU (Pediatric intensive care unit). All told, Mason had three major surgeries within 24 hours.
Immediately after he was born, the doctors rushed him into another room to start the care for him. Now that he was "on his own" he needed to breathe on his own, however the CDH condition that he had would not allow him to do so sufficiently. Once they got him in the room and started working on him, I was allowed to come into the room with him while the c-section doctors finished finding the balloon's inside of Rosie. There were about 10-12 doctors working on Mason. As we expected, the doctors were not able to maintain his vital signs with the use of a ventalator. After a short time (not sure how long because everything was happening so fast, but probably about 15 minutes), the doctors took him down the hall to start the surgical procedure to put him on ECMO, the heart & lung bypass.
I went check on Rosie and let her know what was going on, and then I followed Mason into the Neonatal Intensive Care Unit (NICU). In that room, I counted 22 different people - surgeons, doctors, nurses, etc. - although there may have been more because everyone was moving around quite a bit. The team was able to start Mason on the ECMO machine within about an hour or so, with a few issues which later turned out to be more significant. I have never seen so many people work together in harmony to do anything, let alone perform a complex surgery on a baby.
Once on ECMO for a few hours, it was evident that one of the cathetars used to insert the blood back into Mason's heart was not inserted all the way. Because his was so little, and his right sided CDH condition made his arteries and veins follow some unusual patterns, the cathetar was not able to reach the heart. In order to make ECMO work for Mason, a lot of extra fluid had to be added into the circuit which was causing him to bloat very quickly. The solution was to perform the CDH repair , and try to push the cathetar in the rest of the way while they were in there. Becuase his arteries and veins were so small, the also had to add a couple of additional cathetars (to help measure vital signs and to draw blood samples) as part of this procedure. As a back up plan the doctors would have to open up his chest to put the cathetar directly into his heart.
The CDH repair went well as did the placement of the additional cathetars, however the ECMO cathetar was not able to be pushed in. By this time is was 4:00am Saturday morning. The surgeons went to get some sleep and call in a pediatric cardiac surgeon to perform the backup plan surgery.
The back up plan went off well. Finally, at about 10:30am Saturday morning, Mason finished "the most excitement in his first 24 hours after he was born." Because he had a chest operation, he was moved from the NICU to the PICU (Pediatric intensive care unit). All told, Mason had three major surgeries within 24 hours.
Mason is Here
Mason Tyler Ellinger was born on Friday May 25, 2007 at 3:38pm. He was delivered via an emergency c-section. He weighed 5 pounds, 2 ounces when he was born. He has a lot of light colored hair (from his mom) and his dads big head and wide nose.
On Friday morning, the nurses came in for the normal twenty minute NST run to monitor for contractions and the babies hearbeat . During that run, Mason's hearbeat dipped low for a few minutes so the doctors decided to run the test for two more hours. Towards the end of the two hours his hearbeat dropped again.
At first the doctor said that if it happened a third time they would deliver his later that evening, however after reassessing the situation of the fetal surgeries, the lack of amniotic fluid, and Mason's CDH they decided to perform the c-section right away.
The c-section went pretty good for the first half of it. There were not any complications with the delivery. Once Mason was born they immediately took him into the procedure room. I got to get a quick look at him as they took him away, but Rosie was unable to see him because the curtain near her head was in the way. The second part of the c-section was for the doctors to find the two ballooons from the tracheal occlusion procedures done in San Francisco.
Unfortunately for Rosie, the spinal wore off during the second part of the c-section. She was in a lot of pain for the rest of the c-section and also for several hours afterwards until the doctors were able to get the pain under control.
Rosie spent a few days in the hospital and was officially discharged yesterday, although we were allowed to stay one additional night in a nesting room because Mason is in intensive care.
Tuesday, May 22, 2007
No Baby Yet
Today started out kind of crazy, although we didn't even know how close we were to having a baby until well after the excitement had passed. Because there is not any amniotic fluid, the doctors are very concerned about the umbilical cord being compressed when the baby rolls around. If this were to happen, the babies heart rate would drop significantly and the doctors would have to perform an emergency c-section. The doctors have told us that this would be the case if the heartrate was low for a span of five minutes.
At about 7:00am this morning while Rosie was sleeping Mason's heartrate dropped to 60 beats per minute (it is usually 120-180) for a little while and then came up to the 70-90 range for about 2-3 minutes. The doctors were preparing to do this c-section, and then the heartrate came back so they cancelled and let us continue as we have been for the last several days. When the doctors came in for their morning rounds at about 9:30 they told us what had happened and how close we had come to being parents today.
The rest of the day was rather uneventful, although everytime the baby moved and the monitor started reading Rosie's heartbeat instead of the babies we started to get worried. The doctors also said that even though the heartrate had dropped for a few minutes they were rather pleased with how Mason was doing as his heartbeat had a quick acceleration to it, which is more important to them than a few minutes of cord compression.
Hopefully tomorrow will be even less eventful. The doctors are even considering letting Rosie take a wheel chair ride through the hospital and outside in the garden area tomorrow if things continue to go as well as they did today. Of course there are no promises as they need to be convinced that the baby would be OK during this time, but it would really make Rosie's day go by faster if she could get out and get some fresh air.
At about 7:00am this morning while Rosie was sleeping Mason's heartrate dropped to 60 beats per minute (it is usually 120-180) for a little while and then came up to the 70-90 range for about 2-3 minutes. The doctors were preparing to do this c-section, and then the heartrate came back so they cancelled and let us continue as we have been for the last several days. When the doctors came in for their morning rounds at about 9:30 they told us what had happened and how close we had come to being parents today.
The rest of the day was rather uneventful, although everytime the baby moved and the monitor started reading Rosie's heartbeat instead of the babies we started to get worried. The doctors also said that even though the heartrate had dropped for a few minutes they were rather pleased with how Mason was doing as his heartbeat had a quick acceleration to it, which is more important to them than a few minutes of cord compression.
Hopefully tomorrow will be even less eventful. The doctors are even considering letting Rosie take a wheel chair ride through the hospital and outside in the garden area tomorrow if things continue to go as well as they did today. Of course there are no promises as they need to be convinced that the baby would be OK during this time, but it would really make Rosie's day go by faster if she could get out and get some fresh air.
Monday, May 21, 2007
In the hospital until birth
Rosie is doing well. The doctors have been able to keep her contractions under control with the use of medication. She is currently only having 1-2 mild contractions per hour. Although the medication cannot stop labor (just delay it), the doctors feel that we are getting closer to meeting our goal of deliverying during week 34 of the pregnancy, which starts on Monday of next week.
The doctors were going to let Rosie go home this morning, however the doctors have said it is best that Rosie remains in the hospital until Mason is born. This is because the fetal monitoring records show that Mason's heartbeat slows down during a contraction. The doctors feel this is probably due to the lack amniotic fluid causing umbilical cord compression seen during the contraction.
We are very grateful to be working with Jeanie, our nurse coordinator. She spent quite a bit of time with us today explaining what will happen during and immediately after the delivery. She showed us a picture of the ECMO equipment to refresh our memory from the tour of the Neonatal Intensive Care Unit (NICU) we took back in early March. She also explained how many doctors were going to be involved (about a dozen), what types of equipment Mason was going to be hooked up to(respirator, feeding tube, oxygination monitor, cathiter, I.V., temparature monitor, and probably ECMO). She also gave us some good reading material about the ECMO equipment and its operation. For a couple of Engineers, this was some pretty good reading material. The whole experience can be overwhelming, even when things go well, and she wanted us to know this so we didn't freak out when it started happening.
Another great part about how U of M operates is that they want the parents heavily involved in everything. Once Rosie is stabalized after delivery they are going to take me into the area where all of the doctors are working on Mason. After Rosie recovers a bit, they will bring her in to the room as well, even while she is still in her bed recovering from the epidural.
The night ended tonight with us watching a video explaining the NICU and how it operates, then watching one of Rosie's favorite shows - The Bachelor.
The doctors were going to let Rosie go home this morning, however the doctors have said it is best that Rosie remains in the hospital until Mason is born. This is because the fetal monitoring records show that Mason's heartbeat slows down during a contraction. The doctors feel this is probably due to the lack amniotic fluid causing umbilical cord compression seen during the contraction.
We are very grateful to be working with Jeanie, our nurse coordinator. She spent quite a bit of time with us today explaining what will happen during and immediately after the delivery. She showed us a picture of the ECMO equipment to refresh our memory from the tour of the Neonatal Intensive Care Unit (NICU) we took back in early March. She also explained how many doctors were going to be involved (about a dozen), what types of equipment Mason was going to be hooked up to(respirator, feeding tube, oxygination monitor, cathiter, I.V., temparature monitor, and probably ECMO). She also gave us some good reading material about the ECMO equipment and its operation. For a couple of Engineers, this was some pretty good reading material. The whole experience can be overwhelming, even when things go well, and she wanted us to know this so we didn't freak out when it started happening.
Another great part about how U of M operates is that they want the parents heavily involved in everything. Once Rosie is stabalized after delivery they are going to take me into the area where all of the doctors are working on Mason. After Rosie recovers a bit, they will bring her in to the room as well, even while she is still in her bed recovering from the epidural.
The night ended tonight with us watching a video explaining the NICU and how it operates, then watching one of Rosie's favorite shows - The Bachelor.
Back in the Hospital
On Saturday morning, Rosie woke up with some bleeding and ongoing contractions that were about six minutes apart. We went in to U of M hospital right away. When we got to the hospital the doctors performed and exam and identified that Rosie is now 1 cm dialated. With that, they admitted her into the hospital until things become under control. They started her on an IV of fluids to hydrate her as much as possible (this is supposed to stop contractions) and antibiotics as she tested positive for Type B strep and the baby needs the antibiotics when he is born. They also put her on a clear liquid diet. That worked on Saturday as the contractions were reduced drastically to about one or two every hour. They even changed her diet back to a normal diet by dinner time.
On Sunday morning the doctors came in and said that if the exam they were getting ready to perform produced the same results as Saturday's exam they would have her go home again. Unfortunately the results we different, not only was she 1 cm dialated, but they found out that she is now 80% afaced (spelling?). After that exam they started her on anti-labor medicines. The medicines cannot stop labor, they can only slow it down for a few days at the most. So, they give her a dose of this medicine every six hours. When the medicine is in her system she only has a contraction every 1-2 hours. However, as the dose wears off the contractions start coming back. As of Sunday night the contractions were coming back near the end of the six hour dose to about one contraction every 10-15 minutes.
Right now the doctors (and us) are hoping that we can make it until May 28th and then they would induce labor. This date was picked as it is the start of the 34th week of the pregnancy, which is the week that the lungs would be considered matured. However, that date is starting to look a bit difficult to achieve with all of the contractions Rosie is having.
The pediatric surgeon is not overly concerned if we do not make it to 34 weeks as he does not see a lot of added risk by only making it to 33 weeks, but there is still some additional risk involved by deliverying in week 33 (mainly lung maturity and a slightly higher risk of potential bleeding in the brain during delivery).
We also had a lot of conversations with the doctors over the past few days concerning what would happen when the baby is born. The doctors explained how the baby is evaluated for key vital signs, and of course lung performance. They also explained how ECMO (heart-lung bypass) would be used if needed. Although everyone will not now for sure whether ECMO will be required until after the baby is born, it is the general feeling is that Mason will require ECMO within the first few hours after he is born. After that, they key is to stabalize him further and then determine when to repair the CDH.
We will try to keep everyone as up to date here on the blog as possible over the next few days. And thank you again for the continued thoughts and prayers.
On Sunday morning the doctors came in and said that if the exam they were getting ready to perform produced the same results as Saturday's exam they would have her go home again. Unfortunately the results we different, not only was she 1 cm dialated, but they found out that she is now 80% afaced (spelling?). After that exam they started her on anti-labor medicines. The medicines cannot stop labor, they can only slow it down for a few days at the most. So, they give her a dose of this medicine every six hours. When the medicine is in her system she only has a contraction every 1-2 hours. However, as the dose wears off the contractions start coming back. As of Sunday night the contractions were coming back near the end of the six hour dose to about one contraction every 10-15 minutes.
Right now the doctors (and us) are hoping that we can make it until May 28th and then they would induce labor. This date was picked as it is the start of the 34th week of the pregnancy, which is the week that the lungs would be considered matured. However, that date is starting to look a bit difficult to achieve with all of the contractions Rosie is having.
The pediatric surgeon is not overly concerned if we do not make it to 34 weeks as he does not see a lot of added risk by only making it to 33 weeks, but there is still some additional risk involved by deliverying in week 33 (mainly lung maturity and a slightly higher risk of potential bleeding in the brain during delivery).
We also had a lot of conversations with the doctors over the past few days concerning what would happen when the baby is born. The doctors explained how the baby is evaluated for key vital signs, and of course lung performance. They also explained how ECMO (heart-lung bypass) would be used if needed. Although everyone will not now for sure whether ECMO will be required until after the baby is born, it is the general feeling is that Mason will require ECMO within the first few hours after he is born. After that, they key is to stabalize him further and then determine when to repair the CDH.
We will try to keep everyone as up to date here on the blog as possible over the next few days. And thank you again for the continued thoughts and prayers.
Thursday, May 17, 2007
Doctors Appointments
Today we had 4 doctors appointments at U of M. What we have realized through this ordeal is that each hospital wants to perform its own testing (for several reasons), so today was our turn to have a round of testing done at U of M to see where we were at since the last time we were at U of M in late March. The four appointments were an MRI to measure lung growth, a fetal echocardiogram to measure the baby's heart, veins, and arteries, a high-risk OBGYN appointment, and a standard ultrasound. Once we got through those appointments we had a meeting with the surgeon and one of the doctors to review the results for the day. To summarize, here is what we learned today:
1. There is evidence of lung growth from the balloon procedure. The lung volume (U of M considers this more important than LHR for us) has increased from 3.5 in March to 19. Most of this was due to the baby growing in size, however some of it is also related to the trachheal occlusion. To put this in perspective, a normal baby at 32 weeks would have a value of 60.
2. It appears the amniotic fluid is leaking through the incision in the uterus used in the last procedure to remove the balloon. The doctors are not optimistic that this will heal and expect that the amiontic fluid will remain low for the rest of the pregnancy.
3. The arteries going from the heart to the lungs and back are now a normal size. In March the left side was slightly smaller than expected and the right side was extremely small.
4. Due to the lack of amniotic fluid the doctors are extremely concerned with the umbilical cord becoming compressed. Due to this, Rosie and I have to go get the baby checked out everday (it started today) at U of M hospital until the baby is born.
5. If the cord compression lowers the baby's heartbeat, we will deliver the baby very soon. If cord compression does not become an issue, we will deliver during the 34th week due to the cord compression issue.
With all of that said, there is still a lot of uncertainity with all of this, especially regarding the outcome. The trip to San Francisco did help and we are hoping it helped enough to help make a difference in the upcoming days, weeks, months, and hopefully years.
1. There is evidence of lung growth from the balloon procedure. The lung volume (U of M considers this more important than LHR for us) has increased from 3.5 in March to 19. Most of this was due to the baby growing in size, however some of it is also related to the trachheal occlusion. To put this in perspective, a normal baby at 32 weeks would have a value of 60.
2. It appears the amniotic fluid is leaking through the incision in the uterus used in the last procedure to remove the balloon. The doctors are not optimistic that this will heal and expect that the amiontic fluid will remain low for the rest of the pregnancy.
3. The arteries going from the heart to the lungs and back are now a normal size. In March the left side was slightly smaller than expected and the right side was extremely small.
4. Due to the lack of amniotic fluid the doctors are extremely concerned with the umbilical cord becoming compressed. Due to this, Rosie and I have to go get the baby checked out everday (it started today) at U of M hospital until the baby is born.
5. If the cord compression lowers the baby's heartbeat, we will deliver the baby very soon. If cord compression does not become an issue, we will deliver during the 34th week due to the cord compression issue.
With all of that said, there is still a lot of uncertainity with all of this, especially regarding the outcome. The trip to San Francisco did help and we are hoping it helped enough to help make a difference in the upcoming days, weeks, months, and hopefully years.
Back Home
Rosie and I made it back to Detroit. We flew in Tuesday evening as planned, although there was a bit of drama before we got onto the plane.
On Monday, we went for the final UCSF ultrasound to determine lung growth and measure the amount of amniotic fluid that Rosie had. Unfortunately there was still not any amniotic which caused two issues. The first issue is that this causes baby to be positioned very far down in the uterus. therefore the doctors were unable to take the head measurements required to calculate the LHR value, compare the new LHR ratio to the original value, and determine how much lung growth is present. The other issue is that there is a lot of risk to the pregnancy without any amniotic fluid. The tests today confirmed this risk, and I will write more about this in the next posting.
Before the doctors would let us fly home, Rosie had to go have a thorough exam from the doctors in labor & delivery in the UCSF hospital. This showed that we were not at an immediate risk to go into labor, the doctors allowed us to return.
Rosie had been feeling some mild contractions ever since the first procedure, however we did not know they were contractions until after we got to Detroit and visited U of M. The sensation that she was feeling had slightly increased in frequency Tuesday. Once we landed in Detroit we decided to go to U of M and make sure nothing had changed since the exam at UCSF Monday night. U of M performed some more thorough testing and determined that there was a high probablility Rosie would not go into labor for the next two weeks. U of M also confirmed that the sensations she was feeling were contractions, but they were nothing to be concerned about for now.
We finally got back home and into our own bed at about 3:30am Wednesday morning, and did it ever feel good to be back home again.
On Monday, we went for the final UCSF ultrasound to determine lung growth and measure the amount of amniotic fluid that Rosie had. Unfortunately there was still not any amniotic which caused two issues. The first issue is that this causes baby to be positioned very far down in the uterus. therefore the doctors were unable to take the head measurements required to calculate the LHR value, compare the new LHR ratio to the original value, and determine how much lung growth is present. The other issue is that there is a lot of risk to the pregnancy without any amniotic fluid. The tests today confirmed this risk, and I will write more about this in the next posting.
Before the doctors would let us fly home, Rosie had to go have a thorough exam from the doctors in labor & delivery in the UCSF hospital. This showed that we were not at an immediate risk to go into labor, the doctors allowed us to return.
Rosie had been feeling some mild contractions ever since the first procedure, however we did not know they were contractions until after we got to Detroit and visited U of M. The sensation that she was feeling had slightly increased in frequency Tuesday. Once we landed in Detroit we decided to go to U of M and make sure nothing had changed since the exam at UCSF Monday night. U of M performed some more thorough testing and determined that there was a high probablility Rosie would not go into labor for the next two weeks. U of M also confirmed that the sensations she was feeling were contractions, but they were nothing to be concerned about for now.
We finally got back home and into our own bed at about 3:30am Wednesday morning, and did it ever feel good to be back home again.
Saturday, May 12, 2007
Day After Surgery Update
The day after surgery had some ups and downs associated with it. The day started off well. When I got to the hospital things were well. Rosie was a bit sore, but nothing too bad. She was taken off her firm bedrest and was allowed to get up and go to the bathroom. Later in the day she was also allowed to take a shower, she was taken off all of the monitors, and she was taken off of the IV as well.
We went down for an ultrasound late in the morning. This ultrasound was to determine if the amniotic fluid had started returning to normal levels after being high yesterday. During this ultrasound it was expressed to us by the sonographer that she "could not see a good pocket of amniotic fluid." She mentioned that this could be a very urgent issue so she called our doctors right away and sent us back to the room.
At that point, Rosie and I both had a feeling that we may be parents starting today. However, once we talked with the doctors it became clear the issue wasn't super urgent. Instead, the doctors felt that one of the three holes in the uterus (created during the procedure) had not closed up yet and that the amniotic fluid was leaking into the abdomon. They sent us back down for another ultrasound, this time to check the abdomon for any abnormalities. That ultrasound showed no significant pockets of fluid either. This is actually a good thing as the body was doing a good job of dispersing the fluid throughout the body so it could be absorbed.
As the day went on Rosie got more and more uncomfortable in her abdominal area. This can be attributed to the fact that the spinal given for the surgery takes 24 hours to wear off and was now completely worn off. She was feeling a combination of things such as the effects of having an incision, the muscles that were stretched during the attempt to change the babies position, being pregant and in bed all day, and of course the baby was constantly elbowing and kicking in this area as well.
The afternoon ended well. The surgeon came in and explained to us that the loss of amniotic fluid would not necessarily stop us from going home next week. The doctors examined Rosie and determined that she was not showing any signs of going into labor anytime soon, and they also stopped the medication to prevent contractions
The plan going forward is that we will have another ultrasound tomorrow to check progress of the amniotic fluid. If there are not any abnormalities in that ultrasound and Rosie is doing well, Rosie will be discharged from the hospital tomorrow as well. We will then return to our apartment until Monday, when we have another ultrasound. That ultrasound will be a complete ultrasound. If that ultrasound also goes well, we will return home to Michigan on Tuesday. On Monday, we are hoping to hear how much lung growth was gained by having this procedure done.
We went down for an ultrasound late in the morning. This ultrasound was to determine if the amniotic fluid had started returning to normal levels after being high yesterday. During this ultrasound it was expressed to us by the sonographer that she "could not see a good pocket of amniotic fluid." She mentioned that this could be a very urgent issue so she called our doctors right away and sent us back to the room.
At that point, Rosie and I both had a feeling that we may be parents starting today. However, once we talked with the doctors it became clear the issue wasn't super urgent. Instead, the doctors felt that one of the three holes in the uterus (created during the procedure) had not closed up yet and that the amniotic fluid was leaking into the abdomon. They sent us back down for another ultrasound, this time to check the abdomon for any abnormalities. That ultrasound showed no significant pockets of fluid either. This is actually a good thing as the body was doing a good job of dispersing the fluid throughout the body so it could be absorbed.
As the day went on Rosie got more and more uncomfortable in her abdominal area. This can be attributed to the fact that the spinal given for the surgery takes 24 hours to wear off and was now completely worn off. She was feeling a combination of things such as the effects of having an incision, the muscles that were stretched during the attempt to change the babies position, being pregant and in bed all day, and of course the baby was constantly elbowing and kicking in this area as well.
The afternoon ended well. The surgeon came in and explained to us that the loss of amniotic fluid would not necessarily stop us from going home next week. The doctors examined Rosie and determined that she was not showing any signs of going into labor anytime soon, and they also stopped the medication to prevent contractions
The plan going forward is that we will have another ultrasound tomorrow to check progress of the amniotic fluid. If there are not any abnormalities in that ultrasound and Rosie is doing well, Rosie will be discharged from the hospital tomorrow as well. We will then return to our apartment until Monday, when we have another ultrasound. That ultrasound will be a complete ultrasound. If that ultrasound also goes well, we will return home to Michigan on Tuesday. On Monday, we are hoping to hear how much lung growth was gained by having this procedure done.
Friday, May 11, 2007
2nd Surgery Update
I know this will say that it was posted by Rosie, but this one is actually posted by Travis. I am just too tired to try to figure out how to change the name that is automatically put onto the postings.
Today Rosie had the two balloons removed in a similar procedure as to when the balloons went in. To do so, the doctors wanted to manuever the baby in a fashion to put his head up and facing forward. Unfortunately they were not able to manuever the baby in this fashion, therefore they had to add fluids into the amniotic fluid to allow enough room to use their instruments. Once they did this, the balloons were successfully removed from the tracchea. The doctors then tried to remove enough fluid to reduce the total amniotic fluid to the levels prior to the surgery. Initially, the doctors did not feel they were able to get enough fluid removed. They told us that the fluid levels should return to normal levels within a few days, but they also told us there is a fair chance that the membranes may rupture before that time and force us to stay in San Francisco until the baby is born. They will take a measurement of the fluid levels tomorrow during an ultrasound to measure this progress.
In the meantime, Rosie is resting as much as possible in the hospital. She is on firm bedrest until at least tomorrow and will be in the hospital until at least Saturday. She is doing well although she is getting uncomfortable being 31 weeks pregnant and unable to move around.
Now that the balloons have been removed, we should know if there was any lung growth within the next few days. By having the balloons removed successfully we are definitely not out of the woods, however we have crossed another significant hurdle. If this procedure was very successful and there was significant lung growth, we are still in for a long road ahead with a very uncertain outlook. The lung growth will improve the chances of a good outlook, but cannot eliminate the chances of a poor outlook.
We definitely appreciate all of the support from everyone. We are amazed at how many people are keeping up with our situation and cannot express how thankful we are for all of the thoughts and prayers.
Today Rosie had the two balloons removed in a similar procedure as to when the balloons went in. To do so, the doctors wanted to manuever the baby in a fashion to put his head up and facing forward. Unfortunately they were not able to manuever the baby in this fashion, therefore they had to add fluids into the amniotic fluid to allow enough room to use their instruments. Once they did this, the balloons were successfully removed from the tracchea. The doctors then tried to remove enough fluid to reduce the total amniotic fluid to the levels prior to the surgery. Initially, the doctors did not feel they were able to get enough fluid removed. They told us that the fluid levels should return to normal levels within a few days, but they also told us there is a fair chance that the membranes may rupture before that time and force us to stay in San Francisco until the baby is born. They will take a measurement of the fluid levels tomorrow during an ultrasound to measure this progress.
In the meantime, Rosie is resting as much as possible in the hospital. She is on firm bedrest until at least tomorrow and will be in the hospital until at least Saturday. She is doing well although she is getting uncomfortable being 31 weeks pregnant and unable to move around.
Now that the balloons have been removed, we should know if there was any lung growth within the next few days. By having the balloons removed successfully we are definitely not out of the woods, however we have crossed another significant hurdle. If this procedure was very successful and there was significant lung growth, we are still in for a long road ahead with a very uncertain outlook. The lung growth will improve the chances of a good outlook, but cannot eliminate the chances of a poor outlook.
We definitely appreciate all of the support from everyone. We are amazed at how many people are keeping up with our situation and cannot express how thankful we are for all of the thoughts and prayers.
Monday, May 7, 2007
Another Update
We have some new updates to post today.
Baby Ellinger now has a name. We have decided to name him Mason Tyler Ellinger. We had it narrowed down to a few names and picked Mason because it has a special link to San Francisco.
We also had an appointment with a neonatologist today to discuss the next steps if something were to go wrong on Thursday and they would have to deliver him. It is only to be prepared for an emergency situation. We have been informed that the chances of something going wrong to cause an emergence delivery is low. Even so, a plan must be in place. The doctor we spoke with would be the one in charge of the team of people who would be treating any baby born with CDH this week. Unfortunately there is no way to tell what the outcome would be if he needs to be delivered Thursday. The initial plan would try to stabilize him, most likely with a ventilator. If he is stable, then he will be transferred to the intensive care unit to begin treatment and eventually surgery. If they cannot stabilize him (if the lungs are still to underdeveloped to support him), then he will be given a sedative and a pain killer and then we will be given a private area to give him the love that he needs while he passes. At this point, he would be too small to be considered an ECMO candidate.
In an effort to help his lung maturity I was given a shot of Betamethasone. This is often given to Moms that are at risk to deliver a preterm baby for organ and lung development. I will receive another shot tomorrow. It is important to note that this will not "grow" the lungs any further, only help mature them so that hopefully he can use what he has with the assistance of a ventilator.
To complicate things even further, my body has decided to catch a cold this week. As long as I don't develop a bad cough, this will not affect the surgery. It will just be tough on me to go through surgery and recovery while having a cold at the same time. Right now I am just trying to rest and drink a lot of fluids.
We probably won't be posting any more updates until after the procedure on Thursday. Thanks again to everyone who has been praying for us, sending care packages, cards, encouraging e-mails and posts to this website. We are hoping that we will be able to return home soon!
Baby Ellinger now has a name. We have decided to name him Mason Tyler Ellinger. We had it narrowed down to a few names and picked Mason because it has a special link to San Francisco.
We also had an appointment with a neonatologist today to discuss the next steps if something were to go wrong on Thursday and they would have to deliver him. It is only to be prepared for an emergency situation. We have been informed that the chances of something going wrong to cause an emergence delivery is low. Even so, a plan must be in place. The doctor we spoke with would be the one in charge of the team of people who would be treating any baby born with CDH this week. Unfortunately there is no way to tell what the outcome would be if he needs to be delivered Thursday. The initial plan would try to stabilize him, most likely with a ventilator. If he is stable, then he will be transferred to the intensive care unit to begin treatment and eventually surgery. If they cannot stabilize him (if the lungs are still to underdeveloped to support him), then he will be given a sedative and a pain killer and then we will be given a private area to give him the love that he needs while he passes. At this point, he would be too small to be considered an ECMO candidate.
In an effort to help his lung maturity I was given a shot of Betamethasone. This is often given to Moms that are at risk to deliver a preterm baby for organ and lung development. I will receive another shot tomorrow. It is important to note that this will not "grow" the lungs any further, only help mature them so that hopefully he can use what he has with the assistance of a ventilator.
To complicate things even further, my body has decided to catch a cold this week. As long as I don't develop a bad cough, this will not affect the surgery. It will just be tough on me to go through surgery and recovery while having a cold at the same time. Right now I am just trying to rest and drink a lot of fluids.
We probably won't be posting any more updates until after the procedure on Thursday. Thanks again to everyone who has been praying for us, sending care packages, cards, encouraging e-mails and posts to this website. We are hoping that we will be able to return home soon!
Friday, May 4, 2007
Getting Nervous
Unfortunately we never received the results of the ultrasound last week. However, we did have another ultrasound yesterday and the fetal treatment team seems very pleased with the progress. We were able see both lungs on the ultrasound. The right one is still very small, since that is the side of the hernia and the liver is taking up residence there, but it did look like it responded to the balloon. No one really measures this lung, since it is the smaller of the two, and the focus is really put on the larger left lung. The left lung has responded to the balloon and has grown also. They said the results looked really good. The frustrating this is that no one can tell us what "good" means, since this is still a very experimental process. The fact that this is a right sided hernia makes it even harder for them to define, as it is so uncommon. Most of the trails that they have done with this surgery have been with left sided hernias, so I think they are learning just as much as we are. All we really know is that the lungs grew. This of course will increase the survival rate for the baby when he is born, but we don't know if it is by 4% or 40%.
The procedure to take out the balloon is scheduled for 7:30am next Thursday. I will be admitted the night before so that they can get me on an iv, antibiotics and also preterm labor meds prior to the surgery. I know what to expect now, so that makes the process a little easier. The thing that makes us the most nervous now is that the stakes are a lot higher for this procedure since I will be almost 32 weeks along. It will be almost the exact same procedure as before but the potential complications now carry an increased risk. There is an increased risk of PROM (premature rupture of membranes) and preterm labor. There is also a chance that the baby will not respond well to the surgery or any contractions I may have. We don't know what will happen if this is the case. They also informed us that there is a 1 in 3 chance of a complication that will force us to deliver at UCSF. We are praying that the procedure goes well and that we are able to return home to deliver at UofM.
Having said all of that, please keep us in your thoughts and prayers next week. I am sure that it will be a very emotional week for us and we will be exhausted when it is over.
The procedure to take out the balloon is scheduled for 7:30am next Thursday. I will be admitted the night before so that they can get me on an iv, antibiotics and also preterm labor meds prior to the surgery. I know what to expect now, so that makes the process a little easier. The thing that makes us the most nervous now is that the stakes are a lot higher for this procedure since I will be almost 32 weeks along. It will be almost the exact same procedure as before but the potential complications now carry an increased risk. There is an increased risk of PROM (premature rupture of membranes) and preterm labor. There is also a chance that the baby will not respond well to the surgery or any contractions I may have. We don't know what will happen if this is the case. They also informed us that there is a 1 in 3 chance of a complication that will force us to deliver at UCSF. We are praying that the procedure goes well and that we are able to return home to deliver at UofM.
Having said all of that, please keep us in your thoughts and prayers next week. I am sure that it will be a very emotional week for us and we will be exhausted when it is over.
Subscribe to:
Posts (Atom)
