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.
Monday, May 21, 2007
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.
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