Update 3/31/2011
Fluid levels look to have stabilized at the 26cm after the jump last week. No jump this week, we are still at 26 - Woo Hoo!
Polyhydramnios 3/24/2011
Today's testing showed that I have polyhydramnios due to Alli's condition. The doctors previously mentioned that it is common in CDH cases and have been watching me closely for it. Polyhydramnios is the excessive accumulation of amniotic fluid in the uterus during pregnancy. Amniotic fluid is the fluid that surrounds and protects a baby during pregnancy. Your baby breathes this fluid into its lungs and swallows it. This helps your baby's lungs and digestive system grow strong. Because Alli's lung and digestive system are not what they should be, she is unable to process the fluid properly which leads to the build up.
For now I have a mild case which simply means they will continue to monitor us closely. The extra fluid causes me additional discomfort, but Allison still looks great so they will not be intervening. If my levels continue to rise, they may attempt to drain the excess fluid or prescribe medication depending on the severity because polyhydramnios puts us at risk for preterm labor and other complications. The past few appointments I have been at 20cm which is high but still safe - the maximum before they worry. Today I am at 26cm. I will update on next weeks measurements. The hope is for the levels to stay the same or even decrease.
All other testing they did today was great. Allison is doing a great job growing and moving. Her heart rate is where it belongs and so is mine. No visible signs of preterm labor thus far.
For now I have a mild case which simply means they will continue to monitor us closely. The extra fluid causes me additional discomfort, but Allison still looks great so they will not be intervening. If my levels continue to rise, they may attempt to drain the excess fluid or prescribe medication depending on the severity because polyhydramnios puts us at risk for preterm labor and other complications. The past few appointments I have been at 20cm which is high but still safe - the maximum before they worry. Today I am at 26cm. I will update on next weeks measurements. The hope is for the levels to stay the same or even decrease.
All other testing they did today was great. Allison is doing a great job growing and moving. Her heart rate is where it belongs and so is mine. No visible signs of preterm labor thus far.
Check Up 3/16/2011
Another good check up today! She is now 4lb 8oz and still right on track with her growth. We did some of the monitoring today prior to the regular check ups and she was super active. All the numbers are still positive and she is still on the best end of the spectrum for babies with CDH. As we get closer, it is sounding like an induction may not be necessary which would be great. So far we have gone from thinking a cesarean in Seattle, to an induction around 37 weeks at Sacred Heart, to now most likely allowing her to come on her own at Sacred Heart. The news just keeps getting better - hopefully it will continue this way.
They are saying now that the earliest they would induce, and only if my body is already preparing for birth, would be May 9th (39 weeks gestation). Otherwise we will wait it out for when we are ready on our own. If for some reason she does not want to come out, they are saying they would induce around May 21st (41 weeks gestation) because it gets dangerous for babies to go too far past their due dates. And of course all of this is assuming she does not decide to come earlier on her own - which changes everything. Thus far, things are right on track though, and there are no signs of preterm labor. A lot of ifs-ands-or-buts, so we are trying to just go with the flow and do everything we can in Allison's best interest.
Starting next week we will be doing fetal monitoring every Monday and Thursday. They will do what's called a non-stress-test both days where I have to sit with monitors strapped around my belly for 20-30 minutes. They watch the changes in the babies heart rate while I use a clicker to note each time that I feel her move. One of the monitors strapped around me also watches for contractions and how those affect baby. On Thursdays only, they will also do AFI testing. This is to track the amount of amniotic fluid around the baby and is done through ultrasound. Also on Thursdays, I will have regular visits with my OB. It seems like a lot, but we would do more if we thought it would be helpful in preparing for baby Alli. Hopefully we will have a tour of the birthing center and NICU scheduled soon too, so that we know better what to expect when the time comes. It is creeping up on us really fast!
So, the only bad news we have is that the bills are now starting to file in. Yikes! We are having to fight with the insurance companies already, and she has not even been born yet. It is crazy that a doctor can bill over $300 for just 15 minutes of their time and call it a consultation. Anyway, all is well, and I will update again soon with any new news that comes with the many upcoming appointments.
They are saying now that the earliest they would induce, and only if my body is already preparing for birth, would be May 9th (39 weeks gestation). Otherwise we will wait it out for when we are ready on our own. If for some reason she does not want to come out, they are saying they would induce around May 21st (41 weeks gestation) because it gets dangerous for babies to go too far past their due dates. And of course all of this is assuming she does not decide to come earlier on her own - which changes everything. Thus far, things are right on track though, and there are no signs of preterm labor. A lot of ifs-ands-or-buts, so we are trying to just go with the flow and do everything we can in Allison's best interest.
Starting next week we will be doing fetal monitoring every Monday and Thursday. They will do what's called a non-stress-test both days where I have to sit with monitors strapped around my belly for 20-30 minutes. They watch the changes in the babies heart rate while I use a clicker to note each time that I feel her move. One of the monitors strapped around me also watches for contractions and how those affect baby. On Thursdays only, they will also do AFI testing. This is to track the amount of amniotic fluid around the baby and is done through ultrasound. Also on Thursdays, I will have regular visits with my OB. It seems like a lot, but we would do more if we thought it would be helpful in preparing for baby Alli. Hopefully we will have a tour of the birthing center and NICU scheduled soon too, so that we know better what to expect when the time comes. It is creeping up on us really fast!
So, the only bad news we have is that the bills are now starting to file in. Yikes! We are having to fight with the insurance companies already, and she has not even been born yet. It is crazy that a doctor can bill over $300 for just 15 minutes of their time and call it a consultation. Anyway, all is well, and I will update again soon with any new news that comes with the many upcoming appointments.
Baby Shower 3/5/2011
We had the baby shower on Saturday. It was such a great time! I can't thank those who contributed enough. We had such a long list of things to get before Allison arrived that is down to nearly nothing now. We are lucky to have such great friends and family.
Check Up 2/23/2011
Measurements are still great! She is now 2lbs 12oz with an LHR of 3.6 and liver still down where it belongs. Mommy looks good too - perfect blood sugar and blood pressure levels. One more stretch to a regular check up on the 16th, then we start having appointments twice a week for fetal monitoring and weekly ultrasounds.
Cherubs Donation
A cherub is the nickname given to babies diagnosed with CDH. CHERUBS is also the name of an organization that promotes research, awareness, and support for CDH. There is a link to their website provided to the left.
Our little cherub Allison received a gift package today in memory of Hannah Rose, a cherub that is now an angel. She got a blanket, hat, t-shirt, socks, and more! There were also some things in the package for Steve and I - awareness bracelets, pins, research information and a CDH Baby Book with loads of great cherub information.
CHERUBS is a great organization, and all donations are tax-detuctible so if you have been looking for an organization to donate to, this is the one. We will be donating in honor of Allison as soon as we can!
Our little cherub Allison received a gift package today in memory of Hannah Rose, a cherub that is now an angel. She got a blanket, hat, t-shirt, socks, and more! There were also some things in the package for Steve and I - awareness bracelets, pins, research information and a CDH Baby Book with loads of great cherub information.
CHERUBS is a great organization, and all donations are tax-detuctible so if you have been looking for an organization to donate to, this is the one. We will be donating in honor of Allison as soon as we can!
Meeting the Surgeon 2/2/11
At today's appointment I got to meet the surgeon that will be operating on little Alli when she arrives. Steve could not get work off, so my mom came along with me instead. We checked in at the office after navigating our way through the Sacred Heart Children's Hospital at about 12:30. After a short wait a nurse brought us back to the room where we would consult with the surgeon. She informed us that the wait could get a little long because he was just finishing up with a surgery, but it did not seem too long at all.
When he came in he seemed very friendly and caring, but he also got right to the point. I liked this a lot. He explained what he knows about CDH cases and then allowed us to ask questions. It turns out that he has just recently moved to the Spokane area and started work there at Sacred Heart. He has dealt with 100's of CDH babies and is actually a founder of the National CDH Doctor's Study Group. How perfect is it that a Pediatric Surgeon with such an interest in diaphragmatic hernias would start working at Sacred Heart right at the time when I need him?!?
Due to his past experiences he informed me that he would not be comfortable doing the surgery here at Sacred Heart where ECMO technology is not available unless the ultrasound showed two things - High LHR and Liver Down. When CDH is the only problem a baby has (good heart, no chromosomal defects, etc.) which we have discovered to be Allison's case, the severity and, thus, outcome is determined by two factors: 1) liver position, and 2) lung-to-head ratio or LHR. Liver position refers to whether or not any portion of the liver has herniated, or gone up into the chest of the fetus. Fetuses with the liver up in the chest have a more severe form of CDH and a low survival rate. About 75% of all CDH patients have some portion of the liver herniated into the chest. The lung-to-head ratio, or LHR, is a numeric estimate of the size of the fetal lungs, based on measurement of the amount of visible lung. High LHR values are associated with a good outcome. Fetuses on the best end of the spectrum do not have liver herniated into the chest (liver down) and have a high lung-to-head ratio (LHR greater than 1.4) Only about 25% of CDH babies are on the best end of the spectrum (liver down and high LHR), and they all do well after birth. If Allison is one of these 25% then she will not require the assistance of ECMO, and though still requiring major surgery, will do very well and have no long term affects from the CDH.
He, in his short time at Sacred Heart, has already started developing an ECMO program that will likely become available sometime next year---but that is a little too late for us. He said he is not one to take any risks and even if she is likely not to need ECMO he wanted it available to him unless she fell into this specific best end of the CDH spectrum. I told him that I believed she did based on our last appointments, but that I would get the information sent to him after the ultrasound scheduled for right after this meeting. All in all I really liked Dr. Georgeson and am very glad to know that someone with so much experience with CDH will be handling Alli's case.
Next we headed over to Fetal Medicine for the routine check-up. First they checked on me - weight, blood pressure, questions, concerns, etc. Everything is right on track! Next was the ultrasound. I informed the tech that Dr. Georgeson would be needing the information about her liver position and LHR so that she could pay special close attention to those two things. After she finished the Fetal Medicine Doctor came in and said that all of Allison's growth looks great! She is now 2lbs and developing perfectly. He informed me that her liver has not herniated and that she looks to have a large amount of lung space still available. Woo Hoo! He told me that they would get the information over to Georgeson and gave me a slip to schedule my next appointments.
On my way out they handed me an orange glucose drink that I am to drink the next morning and head into a lab to have blood drawn for the usual 25 week pregnancy glucose tolerance test. I don't expect any issues with that since there are no signs of an issue in any of the usual pregnancy screenings. My next appointments are set for the 23rd. They informed me that after that the appointments will be back to every two weeks since I am at risk of developing polyhydramnios (too much amniotic fluid) with a CDH baby. My levels are perfect now but it can change quickly so they want to keep me monitored because it can cause baby to come too early which is very dangerous for CDH babies.
Overall the days appointments went really great once again! No bad news, and another promising set of measurements. Plus, finally some input from someone who has lots of CDH experience.
When he came in he seemed very friendly and caring, but he also got right to the point. I liked this a lot. He explained what he knows about CDH cases and then allowed us to ask questions. It turns out that he has just recently moved to the Spokane area and started work there at Sacred Heart. He has dealt with 100's of CDH babies and is actually a founder of the National CDH Doctor's Study Group. How perfect is it that a Pediatric Surgeon with such an interest in diaphragmatic hernias would start working at Sacred Heart right at the time when I need him?!?
Due to his past experiences he informed me that he would not be comfortable doing the surgery here at Sacred Heart where ECMO technology is not available unless the ultrasound showed two things - High LHR and Liver Down. When CDH is the only problem a baby has (good heart, no chromosomal defects, etc.) which we have discovered to be Allison's case, the severity and, thus, outcome is determined by two factors: 1) liver position, and 2) lung-to-head ratio or LHR. Liver position refers to whether or not any portion of the liver has herniated, or gone up into the chest of the fetus. Fetuses with the liver up in the chest have a more severe form of CDH and a low survival rate. About 75% of all CDH patients have some portion of the liver herniated into the chest. The lung-to-head ratio, or LHR, is a numeric estimate of the size of the fetal lungs, based on measurement of the amount of visible lung. High LHR values are associated with a good outcome. Fetuses on the best end of the spectrum do not have liver herniated into the chest (liver down) and have a high lung-to-head ratio (LHR greater than 1.4) Only about 25% of CDH babies are on the best end of the spectrum (liver down and high LHR), and they all do well after birth. If Allison is one of these 25% then she will not require the assistance of ECMO, and though still requiring major surgery, will do very well and have no long term affects from the CDH.
He, in his short time at Sacred Heart, has already started developing an ECMO program that will likely become available sometime next year---but that is a little too late for us. He said he is not one to take any risks and even if she is likely not to need ECMO he wanted it available to him unless she fell into this specific best end of the CDH spectrum. I told him that I believed she did based on our last appointments, but that I would get the information sent to him after the ultrasound scheduled for right after this meeting. All in all I really liked Dr. Georgeson and am very glad to know that someone with so much experience with CDH will be handling Alli's case.
Next we headed over to Fetal Medicine for the routine check-up. First they checked on me - weight, blood pressure, questions, concerns, etc. Everything is right on track! Next was the ultrasound. I informed the tech that Dr. Georgeson would be needing the information about her liver position and LHR so that she could pay special close attention to those two things. After she finished the Fetal Medicine Doctor came in and said that all of Allison's growth looks great! She is now 2lbs and developing perfectly. He informed me that her liver has not herniated and that she looks to have a large amount of lung space still available. Woo Hoo! He told me that they would get the information over to Georgeson and gave me a slip to schedule my next appointments.
On my way out they handed me an orange glucose drink that I am to drink the next morning and head into a lab to have blood drawn for the usual 25 week pregnancy glucose tolerance test. I don't expect any issues with that since there are no signs of an issue in any of the usual pregnancy screenings. My next appointments are set for the 23rd. They informed me that after that the appointments will be back to every two weeks since I am at risk of developing polyhydramnios (too much amniotic fluid) with a CDH baby. My levels are perfect now but it can change quickly so they want to keep me monitored because it can cause baby to come too early which is very dangerous for CDH babies.
Overall the days appointments went really great once again! No bad news, and another promising set of measurements. Plus, finally some input from someone who has lots of CDH experience.
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